Faith, Hope and love in healthcare. by British Holistic Medical Association

holistic healthcare Volume 16

Issue 2

Summer 2019

JOURNAL OF

Re-imagining healthcare

• Releasing our professionals

• Resilient neighbourhoods • Self-compassion

• Hope and lifestyle change • Realistic hope

• Activating hope

• Faith, hope and love in community • No ‘I’ without ‘we’ in palliative care • Mother, magic or medicine?

• Faith discrimination in the NHS • Medical schools’ duty of care • Update

• Research

Faith, hope and love in healthcare

• Reviews

holistic healthcare JOURNAL OF

ISSN 1743-9493

Published by

British Holistic Medical Association West Barn, Chewton Keynsham BRISTOL BS31 2SR journal@bhma.org www.bhma.org Reg. Charity No. 289459

Contents Editorial. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Update . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Love’s labours lost . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Why society is straitjacketing its professionals and how we might release them

Iona Heath

Building resilient neighbourhoods with small doses of kindness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Syeda Akhtar

Editor-in-chief

Self-compassion and resilience for healthcare professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Editorial Board

A simple model to find patient hope for positive lifestyle changes: GRIN . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

David Peters petersd@westminster.ac.uk Dr William House (Chair) Professor David Peters Dr Thuli Whitehouse Dr Antonia Wrigley

Production editor

Edwina Rowling edwina.rowling@gmail.com

Advertising

The journal of holistic healthcare has a strong online circulation both nationally and internationally with thousands of page views every month. The journal is available in hard copy and online. To advertise email Edwina.rowling@gmail.com

Kai Krüger

Jen Unwin and David Unwin

Realistic hope – and its role in keeping us resilient in times of crisis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Catherine Zollman with Jennie Evans

Activating hope in times of unravelling . . . . . . . . . . . . . . . . . . . . . . . . . 30 Chris Johnstone

Can life in a former chocolate factory be infused with faith, hope and love? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Lisa Loveridge

There is no ‘I’ without ‘we’ in palliative care . . . . . . . . . . . . . . . . . . . 37 Marina Malthouse

Mother, magic or medicine? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41 David Zigmond

The psychology of the placebo

Products and services offered by advertisers in these pages are not necessarily endorsed by the BHMA.

Faith discrimination in the NHS: Multiple penalties facing Muslim doctors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

www.karenhobden.com

Wassim Merzougui Saleh Jawad

Hina J Shahid

Design

Medical schools’ duty of care and the future of medicine . . . . 54

Cover illustration Molly Mae Mitton mollymaemitton@gmail.com

William House . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60

Printing

Spinnaker Print Ltd

Volume 16 ● Issue 2 Summer 2019

Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61

Reviews . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Unless otherwise stated, material is copyright BHMA and reproduction for educational, non-profit purposes is welcomed. However we do ask that you credit the journal. With this exception no part of this publication may be reproduced in any form or by any other means – graphically, electronically, or mechanically, including photocopying, recording, taping or information storage and retrieval systems – without the prior written permission from the British Holistic Medical Association. Every effort is made to ensure the accuracy of material published in the Journal of Holistic Healthcare. However, the publishers will not be liable for any inaccuracies. The views expressed by contributors are not necessarily those of the editor or publisher. 1

Editorial

In 1518 Henry VIII granted a charter to a small group of London ‘physicians’ giving them the right to decide who could practise medicine. The deal was made on the condition that they would dedicate themselves to the health and security of the nation. At the birth of the National Health Service 430 years later in 1948, doctors’ duty to serve the people, and the state’s responsibility to support them, reached its highest point. Faith, so the dictionary tells us, is confidence or trust in a person, a thing, or a concept. In the context of religion, it applies to a particular system of belief. If, then, as Nigel Lawson once asserted, ‘the NHS is the closest thing the English people have to a religion’, a loss of faith in medicine, in doctors and in the NHS itself would be a very deep loss indeed. Lancet editor Richard Horton named it in 2017 when he wrote, ‘It is with exquisite sadness that anyone concerned with the future of health care in England now observes the present broken covenant of trust between government and medical profession’. Of course the personal–social contract that drives medicine along pre-dates the physician’s Tudor dealings. Two thousand years after Hippocrates, with medicine hurtling along its technical and rational trajectory, there still beats an ethic of service at its heart. And, though doctors aren’t prone to bandying the L-word around, most would agree that altruism – which reflects what was known in ancient Greece as caritas: the love of humanity – is medicine’s fundamental value. Clinical work can be mentally and emotionally demanding and in my resilience projects I meet GPs and hospital doctors – from foundation year to senior consultant level – who are feeling the strain of working in an overstretched and under-resourced NHS. They are a pretty hardy bunch who in general have learned to cope by keeping emotions under wraps. They don’t moan and are normally reluctant to share stories of defeat or failure. Lately, however, they more often speak about the frustration they feel at being unable to look after patients to the best of their ability. Sometimes I have been struck by the undercurrents of loss that I sense in my resilience workshops: something like Richard Horton’s ‘exquisite sadness’.

David Peters Editor-in-Chief

The NHS depends on its highly (and expensively) trained doctors and nurses, but burnout and early retirement are on the rise in a system that’s failing to resource and support them (Wilson and Simpkin, 2019). The consequent feelings of ineffectiveness are an early feature of burnout. Doctors often blame themselves for feeling this way, so when the going gets tough, they try even harder to deliver: for a while they run on hope. I’m seeing signs that their hope is running out. Many are dropping out, but other equally dedicated souls struggle on because of their love for the work until, if the emotional and interpersonal strains are unremitting, exhaustion hits, and withdrawal and cynicism follow, for though doctors and nurses might brush the idea off, faith, hope and love provide a moral and ethical compass for their work. Without them we are lost. This issue of JHH is all about keeping these values alive, and what gets in the way when, as Iona Heath tells us in her leading article, society is straitjacketing its professionals. We will learn that kindness is helping to build compassionate communities in urban Birmingham and rural Keynsham, and that healthworker resilience requires self-compassion. We hear about the power of hope from colleagues encouraging lifestyle change, who support people living with a cancer diagnosis, or work in end-of-life care. Chris Johnstone considers how we maintain hope in times of wider environmental unravelling. Hina J Shahid tells of faith discrimination in the NHS. So much of what we deeply value is intangible: no pharmaceutical can provide the faith, hope or love to help carry us through the unbearable times in our life. Yet every medicine is curiously entangled with how we feel about its prescriber. We may dismiss it as the placebo effect, but what if we were to more deliberately imbue a prescription with hope and care? David Zigmond reveals some inspiring possibilities. Finally, two future doctors consider medical schools’ duty of care and the future of medicine

References

Wilson H, Simpkin A (2019) Why are so many doctors quitting the NHS? – it’s time to ask the right questions. Thebmjopinion. Available at: https://blogs.bmj.com/bmj/2019/01/25/why-are-so-manydoctors-quitting-the-nhs-its-time-to-ask-the-right-questions (accessed 19 June 2019). Horton R (2017) Tackling the despair of England’s NHS. The Lancet 389 (10066) p238.

●

Volume 16 Issue 2 Summer 2019

UPDATE

BHMA Real Food campaign

Weleda gardens open day

In search of a sustainable, affordable and nourishing British diet

Sunday 14 July 2019 11am–4pm The Field, Hassock Lane, Heanor, Derbyshire DE75 7JH

The Venn diagram connecting soil, soul and society reveals that we have to start viewing nutrition as impacting on many levels – from the genome to the ozone layer. Big picture: meat makes methane, and agribusiness has impoverished the soil microbiome, and in parallel a depleted human microbiome is having widespread consequences for mind and body. Voices are being raised against the unholy marriage whereby Big Food makes us sick and Big Pharma sells us the ‘cures’. And so the BHMA called a circle of organisations that feel the urgent need to tackle these knotty and entangled challenges. We intend to fire up a coalition of parties that will promote the lifegiving and overlapping areas of sustainable agriculture, lifestyle and diet. And, in addition, to tell a story about the healing power of relationship; with the soil, with one another and with the larger community. The autumn issue of JHH will focus on these issues.

BHMA doctors’ retreats

While the idea of nature immersion for medics may seem novel, there is good research evidence for it. The impact on GPs of prolonged overload, and the stress of facing ever-rising demands with shrinking resources needs creative responses. These retreat programmes have been jointly developed by Hazel Hill Trust, Westminster Centre for Resilience and the BHMA. Following two very successful pilot programmes with hospital doctors, a pilot group in June was tailored to GPs. We plan to organise regular nature immersion work in the coming months.

Ecopoetics

College of Medicine food conference Food on Prescription

Over the past three years, the College of Medicine's Food Conference has become the leading UK event on food, lifestyle and medicine and is a ‘must attend’ for healthcare professionals who want to create a healthier future for patients, communities and the nation. The 2019 conference will focus on: • the latest insight on the biome and the relationship of food to our major lifestyle conditions • supporting healthy eating throughout our communities and nation • transforming the clinician to patient relationship between GPs • creating a coalition of stakeholders to reverse the current situation whereby those who most need healthy food are the least likely to be able to either access it or want it. https://collegeofmedicine.org.uk/events/#!event/2019/10/2 4/food-on-prescription

Being-with the Forest: an eco-poetics day for healthcare practitioners and students Saturday 13 July 11am–6pm This event for healthcare practitioners and medical students will use VERT Institute's practice of art-making and writing to explore embodied experience of the relationships between inside and outside, nature and culture, microcosm and macrocosm. The aim of the Institute is to offer unusual and stimulating art and writing events and workshops based on the creative ideas and experiences of poet Kay Syrad and world-renowned land artist Chris Drury. Laughton (near Lewes, East Sussex), vegetarian lunch provided. Maximum 12 participants. See www.kaysyrad. co.uk/vert-institute.php and http://chrisdrury.co.uk. Cost: £100 for doctors, students £50 (some bursaries available) 10% discount for BHMA members.

A rare opportunity to visit Weleda UK’s private gardens and wildflower meadow and get some insights into the plants that are at the heart of their natural products. Profits go to support the work of Derbyshire Wildlife Trust and local initiatives. See www.weleda.co.uk/openday

●

Volume 16 Issue 2 Summer 2019

12th European congress of integrative medicine

The Spanish Society of Health and Integrative Medicine (SESMI) and European Society of Integrative Medicine (ESIM) are organising the 12th Congress of Integrative Medicine in Barcelona from 13–15 September 2019. The influence of integrative medicine is increasing all over the world, with health professionals and patients looking for an overall wellness. This allows an array of disciplines, including environmental, social, psychological and emotional to work together. The congress will approach the main areas of interest in Integrative Medicine. Full information at https://ecim2019-barcelona.sesmi.es/en

Love’s labours lost L ABO U R O F L OV E

Why society is straitjacketing its professionals and how we might release them Iona Heath Retired GP

I am a doctor. So when talking about professionals I all too easily slip into talking about doctors. Forgive me – my intention and hope is that everything I have to say about doctors applies to a greater or lesser extent to teachers, social workers – indeed to any group who have been previously described as public servants.

My title is ‘Love’s Labours Lost’. In order to explore it we need first to understand better what exactly constitutes ‘a labour of love’.

I had the great privilege of working as a general practitioner in Kentish Town in London for 35 years, contributing to the care of a quite extraordinary diversity of individuals and families extending across up to four generations. Nothing could be more fascinating. To my considerable surprise I have had a secondary career as a writer in which I have been particularly interested to explore the nature of general practice, the importance of medical generalism, issues of justice and liberty in relation to healthcare, the corrosive influence of the medical industrial complex and the commercialisation of medicine, and the challenges posed by disease-mongering, the care of the dying, and violence within families.

Labour of love The phrase is derived from the Bible and it seems to have two possible characteristics. First, work undertaken from fondness for the work itself and/or secondly, work that benefits persons whom one loves. Both of these characteristics are relevant to the work of public service professionals. Love in the sense I am describing is derived from the Greek word ‘agápe’. This is usually translated as love, but in the King James version becomes charity which I find intensely unsatisfactory – it is perhaps closer to beneficence or altruism. It is the sort of disinterested but unconditional commitment needed by professionals. Agape is one of the four Greek words for love, the others being eros for sexual love, philia for the love of friends and storge for family love. It is surprising that a language as rich as English has to cover all four with just one word. I am reminded of Sabin’s wonderfully titled paper in the British Medical Journal ‘Fairness as a problem of love and the heart’ in which he says: ‘We clinicians can love our patients and the population they are a part of only when we can comprehend the needs of both in

emotional as well as clinical and epidemiological terms’.1 He continues: ‘Being able to do this depends partly on whether our clinical education and professional ethics include public health as well as individual care values. But it depends at least as much on a political process that addresses priorities and rationing in the same caretaking spirit that the best clinicians apply in the care of their patients. This requires a political

‘…the greatest book ever written about general practice’

●

Volume 16 Issue 2 Summer 2019

LABOUR OF LOVE

Love’s labours lost

leadership that has been comparatively rare to date’. In terms of political leadership, that would perhaps seem to understate the case. So let’s go back to 1967 and what is in my view the greatest book ever written about general practice, about what I tried to do every working day for more than 30 years. In A Fortunate Man, John Berger describes his friend John Sassall: ‘His satisfaction comes from the cases where he faces forces which no previous explanation will exactly fit, because they depend upon the history of a patient’s particular personality. He tries to keep that personality company in its loneliness.’ This is most certainly a description of a labour of love. Yet by 1996, in his book of essays Photocopies, John Berger is writing this: ‘I have come to mistrust most doctors because they no longer really love people’.2 From the author of A Fortunate Man, this is a devastating indictment.

Knights and knaves and altruism What had happened in the intervening years? For one thing – the government of Margaret Thatcher: a nadir for the politics of hope, inclusiveness and social solidarity. Then there is the thinking espoused by the economist Julian Le Grand who himself became part of the problem as the health adviser to the No 10 Policy Unit under Tony Blair. He has written extensively about what he refers to as ‘knights, knaves and pawns’ in social policy.3 He puts queens and pawns on the vertical axis and knights and knaves on the horizontal (see below) in order to identify a number of different domains. He claims that in a centrally planned economy professionals are seen as knights acting entirely ltruistically while the recipients of services are seen as pawns, passively grateful for what they get.

With the shift to a market economy, pawns become queens because ‘the customer is always right’ and professionals are recast as knaves who can be assumed to be acting in their own interests unless constrained by regulation.

●

Volume 16 Issue 2 Summer 2019

When I embarked on my career in 1974, to be a public servant was to be doing something good. But by the end of the 1980s, the same role had become, through a painful and demoralising process, somehow despicable. Economists argued that the only effective incentives were financial. What disappeared was any trace of a gift economy within which professionals remain knights but recipients can be queens – in a context of reciprocation and solidarity. Teachers stopped teaching sport after school. Doctors looked to give up out of hours care. Once altruism was no longer acknowledged and valued, it began to wither. In his essay The Moment of Cubism, John Berger quotes from Apolllinaire’s last long poem La Jolie Rousse: Pity us who fight continually on the frontiers Of the infinite and the future Pity for our mistakes pity for our sins And this too was what was lost in the Thatcher years – any sense that public service professionals work every day along these frontiers of the infinite and the future, that mistakes are inevitable however hard one strives. Any attempt to understand the nature of the professional task all but evaporated from the consciousness of politicians. As Ballatt and Campling say in their book Intelligent Kindness, ‘It is easy to forget the appalling nature of some of the jobs carried out by NHS staff day in, day out – the damage, the pain, the mess they encounter, the sheer stench of diseased human flesh and its waste products’.4

False certainty All these trends represent an ever greater assertion of a crude reductionism – in both science and economics. These have been the driving forces of each successive attempt at ‘reform’, be it in the health service or in education. Both deal only with objects and make no concession to the subjectivity of either the recipients of services or of professionals. Both deal in false certainty. Both treat the body as a machine and medicine as the pursuit of technical solutions. Both are disconnected from any notion of human suffering. Yet contrary to much we are told, medicine is not engineering, the body is not a machine and there are no easy answers. The trends have been towards certainty and control. Certainty pretends that there are always right answers and this illusion becomes the basis for control and coercion. The Nobel physicist Weiner Heisenberg argues against this grasping at certainty: ‘One may say that the human ability to understand may be in a certain sense unlimited. But the existing scientific concepts cover always only a very limited part of reality, and the other part that has not yet been understood is infinite’.5 And lines from Love’s Labours Lost seem to say much the same thing: If study’s gain be thus, and this be so, Study knows that which yet it does not know. 5

LABOUR OF LOVE

Love’s labours lost

These earthly godfathers of heaven’s lights, That give a name to every fixed star, Have no more profit of their shining nights Than those that walk and wot not what they are.

Power… and resistance The waning of professional power is portrayed as being in the interests of patient autonomy but its replacement by corporate power within a market economy may compromise patient autonomy even more destructively. It is the interests of corporate profit which underpin the diminishing of both patients and doctors to replaceable units – one of health need and the other of healthcare provision. These trends are generating huge and increasing commercial profits and are shifting attention and investment within health care from the sick to the well, from the old to the young and displacing care mediated by touch with a system driven by paper and computers. These trends operate in the interests of politicians because a system in which the agents are interchangeable is much easier to organise and to control and it also minimises the possibilities of physicians and patients forming political alliances with the potential to draw public attention to the deficiencies and failure of government. The trends operate in the interests of global capital because markets are maximised wherever consumers and employees can be standardised. Yet, the exercise of power always breeds resistance. As Eliot Friedson puts it, ‘substituting [bureaucratic] arrangements for trust results actually in a Hobbesian situation, in which any rational individual would be motivated to develop clever ways to evade them…. An enormous variety of empirical studies carried out over the past half-century has shown that, when they feel no loyalty to it, people do not passively obey, but instead actively seek ways of ‘getting around the system’ wherever they can. Heavy-handed emphasis on individual material incentives or on conformity with bureaucratized standards can be expected to lead to manipulation of the system to the detriment of policy intentions’.7 I think we see these processes in action across the public services. 6

Risk and contingency On top of all this, also as part of the culture of control, we have powerful new strands of rhetoric about risk and safety – the one to be minimised, the other maximised – aims which are now assumed to trump other equally valid aspirations such as allowing children to explore, to play freely and to learn from their own experience. As one commentator rightly points out, ‘risk discourse is redolent with the ideologies of mortality, danger, and divine retribution. Risk, as it is used in modern society, therefore cannot be considered a neutral term’.8

❛

It is the interests of corporate profit which underpin the diminishing of both patients and doctors to replaceable units

❛

There is always more to learn, more to understand. False and premature certainty – the delusory idea, for example, that we fully understand the causes of illness and disease and how to intervene; or how children learn and the best way to teach – all this closes down our curiosity and constrains the reach of our minds. Yet, as the American anthropologist Clifford Geertz has it, ‘the reach of our minds, the range of signs we can manage somehow to interpret, is what defines the intellectual, emotional and moral space within which we live’.6 False certainty constrains the intellectual, emotional and moral space within which we live – and sabotages that sense of wonder described by Shakespeare – again in Love’s Labours Lost:

The rhetoric of risk trades on a politics of responsibility which transmutes into an increasingly oppressive social obligation. We are encouraged to be afraid or ashamed of what we eat and drink and breathe and to avoid a whole panoply of different risks and to lead ever more regulated lives devoid of fun and thrills. The Royal College of Psychiatrists tried to stem the tide in a 2002 report: ‘Strict adherence to guidelines, for fear of risk, should not be allowed to stifle responsible, innovative practice or the patient’s choice of alternative therapeutic solutions to the same problem’.9 There are clear dangers in the rigid application of protocols based on population data to individuals and the increasingly heavy hand of bureaucratic surveillance seems likely to impede sensitivity, flexibility and innovation in the delivery of care. The standardisation of professionals is welcomed as a way of eliminating the worst of practice, but it may also eliminate the best. Is this a beneficial exchange? Let us listen to two wise women – first the British philosopher Mary Midgley. She says, in Science and Poetry: ‘Out of this fascination with new power there arises our current huge expansion of technology, much of it useful, much not, and the sheer size of it dangerously wasteful of resources. It is hard for us to break out of this circle of increasing needs because our age is remarkably preoccupied with the vision of continually improving means rather than saving ourselves trouble by reflecting on ends’.10 We have become the age of unthinking doing – keep doing, don’t stop to think – there’s no time! And there’s no time because we are too busy doing. The second wise woman – the American philosopher Martha Nussbaum – recognises the monstrous ambition now in play: ‘The human being, who appears to be thrilling and wonderful, may turn out at the same time to be monstrous in its ambition to simplify and control the world. Contingency, an object of terror and loathing, may © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

LABOUR OF LOVE

Love’s labours lost

turn out to be at the same time wonderful, constitutive of what makes a human life beautiful and thrilling’. Only because we do not understand everything and because we cannot control the future is it possible to live and to be human.

Trust and regulation In May 2006, in the aftermath of the Harold Shipman murders, I was asked to speak at a conference at the Royal Society of Medicine. I was given the title After Shipman: redefining trust between patients and doctors – a medical view. The thesis seemed to be, as so often, that something dreadful had happened and so everything must change. I argued that this was neither appropriate nor possible. It is not possible to redefine trust, any more than love can be redefined when it turns sour or justice when, yet again, it falls short. The hope of all three – the aspiration – remains intact despite all the ravages of history and Harold Shipman seemed unlikely to change that. In his poem Flora, John Burnside writes: Because it can only be shared like a waltz or trust Trust occurs between particular individuals. I may have been insensitive and complacent, but I had been unable to detect any effect of Harold Shipman on the trust between my patients and myself. And it is a two-way trust: ‘Basic trust permits a type of letting go that may be at once the most difficult and the most necessary: relinquishment of the need for certainty itself, in recognition that lingering, ineradicable doubt – intellectual, scientific and moral – is given with every demand for action and decision by finite human beings’.12 Without trust, constructive social interaction and all forms of society are impossible. When I stop to ask a stranger for directions, we must both trust each other’s intentions or we turn from each other in fear. Patients went to see doctors the day after the Shipman verdict because when you are sick and vulnerable, you must find someone to trust – trust that your story will be heard and believed, trust that you will be seen and valued as a unique human individual, trust that you will be given advice informed by both medical science and an appreciation of your own values and aspirations. Here is a Norwegian philosopher using a wonderful old English word for well-being: ‘Their weal has to do with the degree to which they are treated with a sense of justice and with trust and the degree to which their dignity and autonomy as persons is respected’.13 This applies to everyone – to doctors just as much as to patients. Doctors, teachers, social workers, have needs too. We know that two wrongs do not make a right. The first unprecedented wrong was the murderous criminal activities of Harold Shipman. But the second wrong is this: the increasing surveillance and coercion of doctors.

●

Volume 16 Issue 2 Summer 2019

The idea that trust can be secured by regulation is at best questionable. It is well to remember that the worst abuses of medicine have occurred at times when doctors have been completely subservient to politicians – in Germany, in Russia, in South Africa and in the US. As Thurstan Brewin said in discussing the concept of ‘primum non nocere’(first do no harm) in The Lancet, ‘in medicine it is hard to be sure of anything. We can only weigh the evidence; bear in mind individual lifestyle, hopes, fears, and wishes; and rely on the varying proportions of trust and informed consent that each patient seems to want or need’.14 Julian LeGrand wrote to me when he was Tony Blair’s health policy adviser. I had obviously written or said something that did not make any sense in his world. ‘How does the idea of greater agency for doctors sit with the idea of greater agency for patients?’ he asked. It seems to me that only an economist could imagine that agency is part of a zero sum equation. In reality, the intention of most human interactions is to increase the agency of both parties and interactions between doctor and patient are no exception. The task of doctor and patient is to work together to achieve greater power and control over illness and disease and the agency of both parties is increased in its successful execution. The real power struggle today is not between doctors and patients – in the real power struggle, most doctors and most patients are on the same side.

Numbers and coercion Computers are driving an obsession with measurement and it is being used in a normative and coercive way – to define, demonise and coerce ‘deviant’ behaviour whether among doctors or patients. Depression provides perhaps the most obvious example of how this operates in the interests of those in power. Over the last two decades we have seen a pandemic of depression. Richard Layard, emeritus professor at the London School of Economics, claims that around 15% of the population suffers from depression or anxiety. He notes that the economic cost in terms of lost productivity is huge – around £17 billion, or 1.5% of UK gross domestic product. Any practising clinician knows that depression is not a random and discrete sickness but a complex human reaction to frustration and disappointment – to inadequate housing, to relative poverty and to lack of educational and employment opportunity. Focus on the problem of depression allows those on the losing side of society to be portrayed as mentally ill and the injustices of society can remain unexamined. Each individual human being is in some fundamental sense unknowable and we struggle with that all the time. And within contemporary society, we obscure our view yet further by our obsession with numbers. Alvan Feinstein, Professor of Epidemiology at Yale, suggests that clinicians who know a lot allow themselves 7

LABOUR OF LOVE

Love’s labours lost

As one of Feinstein’s intimidated clinicians who has spent a professional lifetime trying, with only limited success, to align the assertions and dictates of medical science with my patients’ experience of illness and suffering, I found these revelations both alarming and comforting. It becomes so much easier to understand the regular appearance of apparently contradictory studies and the way in which very promising treatments can be rapidly discredited as the harms begin to outweigh the benefits. And when all of this is compounded by systematic exaggeration of claims to support the sale of pharmaceuticals or to cajole patients to participate in screening interventions, the whole enterprise becomes yet more murky.

The need for judgement I am arguing that the vaunted claims of certainty are illusory and coercive – the only real certainty is the moral challenge of The Other. Zygmunt Bauman puts it like this in his Ethics After Uncertainty: ‘As the greatest ethical philosopher of our century, Emmanuel Levinas, puts it morality means being-for (not merely being-aside or even being-with) the Other. To take a moral stance means to take responsibility for the Other; to act on the assumption that the well-being of the Other is a precious thing calling for my effort to preserve and enhance it’.16 How do we undertake this ‘being for’ for each of our patients or other group of those we are expected to serve – and particularly for those who are most vulnerable and most damaged? We can never do it by allowing ourselves to become standardised and interchangeable: ‘Human variability is 8

such that for a seriously ill person, the physician cannot be a replaceable part. If we insist on treating ourselves as such, we should not be surprised if society treats us as laborers rather than as professionals. We should also not be surprised if it does something to us as people. As we withdraw from our patients, we will be the poorer for it. Our professional lives will be less satisfying, and we will lose much of the depth of experience that medicine can give us’.17 Medical and most other professionalism is essentially to do with the attempt to match general truths to individual needs. Medical science has achieved enormous success through this process – yet every individual is unique. Given this uniqueness, there will always be a mismatch between the general and the particular which leads to the possibility of different courses of action, different views of what is right and wrong and hence a situation that is always difficult and which requires judgement and commitment. This is what Donald Schön described so adeptly in The Reflective Practitioner. ‘In the varied topography of professional practice’, he wrote, ‘there is a high, hard ground where practitioners can make effective use of research-based theory and technique, and there is a swampy lowland where situations are confusing ‘messes’ incapable of technical solution. The difficulty is that the problems of the high ground, however great their technical interest, are often relatively unimportant to clients or to the larger society, while in the swamp are the problems of greatest human concern.

❛

As we withdraw from our patients, we will be the poorer for it

❛

to be intimidated by numbers: ‘The incomplete clinical reasoning is encouraged by the silence of clinicians who know better, but whose innumeracy makes them insecure or intimidated when confronted by statistics’.15 Again, I suspect that this holds true across the public service professionals. In 2010, I had the good fortune to attend the Bradford Hill Memorial Lecture at the London School of Hygiene and Tropical Medicine, given by Sander Greenland, Professor of Epidemiology and of Statistics at UCLA. He described contemporary statistical practice as perpetuating hopelessly oversimplified biological and mathematical models and promoting excessive certainty through the promulgation of a two-valued logic which allows only complete certainty of truth or falsehood.

‘There are those who choose the swampy lowlands. They deliberately involve themselves in messy but crucially important problems and, when asked to describe their methods of inquiry, they speak of experience, trial and error, intuition, and muddling through.’18 Medicine is an endeavour that must constantly balance the technical and the moral – in which uncertainty is inevitable and the capacity to exercise judgement essential – ‘the flexible discretionary judgment that is necessary to adapt services to individual needs’.19 Professionals, alongside Italo Calvino’s evocation of the god Mercury, find themselves: ‘between universal laws and individual destinies, between the forces of nature and the forms of culture, between the objects of the world and all thinking subjects’.20 And professional judgement is in constant danger of being crushed between government regulation on one side and the market forces of competition on the other. The novelist George Eliot also wrote about pawns and queens, but in a rather more interesting way than Julian

●

Volume 16 Issue 2 Summer 2019

LABOUR OF LOVE

Love’s labours lost

Vulnerability This is Charlotte Williamson, first chair of the RCGPs patient liaison group: ‘Patient autonomy requires that the patient be free from coercion, whether overt or covert. The doctor, too, must be free from coercion, free to explore values, perspectives, anxieties and clinical evidence, free to discuss all possible courses of action with the patient’.22 We hear the truth of what such an encounter really involves from Miguel Torga, pseudonym of Adolfo Correia da Rocha, one of the greatest Portuguese writers of the 20th century. He wrote poetry, short stories, plays and a 16 volume diary. And he was also a rural general practitioner – this is from his diary: ‘I’m not equipped to get used to the routine, to sleepwalk under the professional mantle; each consultation, even though I’m already an old hand at this job, is still a initiation rite, a smiling martyrdom. Yes, I smile, and inside I eat my heart out. Unable to stick the standard treatment stamp on the envelope of symptoms, I stop, indecisive, at harm’s cross-roads; puzzled by its fatality which, in the best of cases, is only deferred.’23 This is what it is really like to be a professional. To a very great extent it depends on remaining vulnerable – not least to doubt and uncertainty. Politicians must always put the needs of the population above those of the individual; clinicians, if they are to retain the trust of patients, must necessarily do the

reverse. There is an irreconcilable conflict between societal fairness and sensitivity to individual need. Increasingly, in the laudable pursuit of equity, a utilitarian public health agenda is being actively imposed on the fragile good of the clinical encounter. And on, as Camus put it, ‘the job of keeping alive,

❛

Medicine is conducted in dialogue between doctor and patient and both parties have passions and intellects

❛

Le Grand. ‘Fancy what a game of chess would be if all the chessmen had passions and intellects’, she writes in Felix Holt. ‘You might be the longest-headed of deductive reasoners, and yet you might be beaten by your own pawns. You would be especially likely to be beaten, if you depended arrogantly on your mathematical imagination, and regarded your passionate pieces with contempt.’21 Medicine is conducted in dialogue between doctor and patient and both parties have passions and intellects – and the actions and responses of neither party will ever be entirely predictable, and will always frustrate those exercising only their mathematical imagination.

through the apocalyptic historical vista that stretches before us, a modest thoughtfulness which, without pretending to solve everything, will constantly be prepared to give some human meaning to everyday life’.24 Population-based public health objectives with centralised control and a strong emphasis on costeffectiveness and equity damage and detract from the individual focus of patient-centred care. Patients’ needs extend far beyond the biomedical and are easily marginalised if the agenda of the consultation is dictated by forces outside it. When political imperatives predominate, the political becomes concrete and people become abstract, diminished to units of political significance. Politicians and policymakers tend to regard the health care system as instrumental to the end of a healthier and longer-living population and ignore the intrinsic value of health care as expressing society’s commitment to the welfare of its citizens and constituting in itself a societal good. The former objectifies patients as the recipients of units of heath care, whereas the latter responds explicitly to the subjectivity of patients. Much of the political history of the last century demonstrates how easily utilitarianism at a policy level can degenerate into the coercion of individuals. This is the great Polish poet Zbigniev Herbert – in many of his poems Mr Cogito appears to be is alter ego25: Mr Cogito’s imagination has the motion of a pendulum it crosses with precision from suffering to suffering there is no place in it for the artificial fires of poetry he would like to remain faithful to uncertain clarity

Miguel Torga, one of the greatest Portuguese writers of the 20th century and a rural general practitioner

●

Volume 16 Issue 2 Summer 2019

The great comfort is that none of us knows exactly what will happen to us tomorrow. We know a lot about probability but probability is a long way from certainty. People do not always get the result predicted by their lifestyle. Not everyone who smokes or is obese dies prematurely. Conversely, a good diet and regular exercise does not provide complete protection from random 9

LABOUR OF LOVE

Love’s labours lost

disaster. Nonetheless, when death or disease occurs prematurely and unpredictably, the rhetoric of preventive medicine suggests that someone somewhere must somehow be at fault. The situation is immensely more complex. Uncertainty is the basis of both intellectual freedom and political resistance.

Moral literacy

Professionalism demands and is defined by different modalities of literacy. For doctors: Medical literacy ensures that where the patient has a disease for which medicine offers effective treatment then the pattern of the patient’s symptoms will be recognised and appropriate action taken. This relies on a solid grounding in biomedical science and an ability to work things out from biological principles. Physical literacy makes use of the doctor’s subjective awareness of his or her own body, combined with his or her objective knowledge of the body as a biological specimen. This combination underpins the empathic interpretation of the patient’s symptoms which lies at the root of diagnosis. Emotional literacy allows the doctor to acknowledge and witness the patient’s suffering and pain, and to help in the struggle to find a way forward. Cultural literacy enriches the search for meaning with examples of the way others have made healing sense

of the same sorts of hurt and pain. And finally we also need moral literacy. Because making professional judgements in the face of uncertainty requires and will always require moral courage. In the words of the great francophone poet from Martinique, Aimé Césaire: ‘Beware, my body and my soul, beware above all of crossing your arms and assuming the sterile attitude of the spectator, because life is not a spectacle, because a sea of sorrows is not a proscenium, because a man who cries out is not a dancing bear.’26 And that is why we must do everything possible not to lose the commitment, the courage, the openness, the willingness to keep thinking, that makes up the love in our professional labours.

References 1 2 3 4 5 6 7 8

9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26

Sabin JE. Fairness as a problem of love and the heart: a clinician’s perspective on priority setting. BMJ 1998; 317: 1002–4. John Berger. A man holding up a horse’s bridle. In Photocopies, 1996. Julian Le Grand. Knights, Knaves or Pawns? Human Behaviour and Social Policy, Journal of Social Policy 26. 2. 149–169, 1997. Ballatt J, Campling P. Intelligent kindness: reforming the culture of healthcare, 2011. Werner Heisenberg quoted in John Berger. The moment of cubism, 1969. Geertz C. Available light – anthropological reflections on philosophical topics, 2000. Freidson E. The centrality of professionalism in health care. Jurimetrics Journal 1990; 30: 431–45. Lupton D. Risk as moral danger: the social and political functions of risk discourse in public health. International Journal of Health Services 1993; 23(3): 425–35. Royal College of Psychiatrists. Vulnerable patients, vulnerable doctors: good practice in our clinical relationships, 2002. Mary Midgely. Science and poetry, 2001. Nussbaum MC. The fragility of goodness, 1986. Barnard D. Love and death: existential dimensions of physicians’ difficulties with moral problems. J Med Philos, 1988; 13:393–409. Vetlesen AJ. Perception, empathy, and judgment, 1994. Brewin T. Primum non nocere? The Lancet 1994; 344:1487–8. Feinstein AR The problem of cogent subgroups: a clinicostatistical tragedy. J Clin Epidemiol 1998; 51:297–299. Zygmunt Bauman. Alone again: ethics after uncertainty, 1994. Ian McWhinney. A textbook of family medicine, 1981. Donald A Schön. The reflective practitioner: how professionals think in action, 1983. Friedson E. The centrality of professionalism in health care. Jurimetrics Journal 1990; 30: 431–45. Calvino I. Six memos for the millennium, 1985. George Eliot. Felix Holt: the radical. Williamson C. Some comments on Doctors in society: medical professionalism in a changing world. Miguel Torga. Diaries 1933–1976, Br J Gen Pract 2001; 51:1043– 1047. Albert Camus. Neither victim nor executioner, 1946. Zbigniew Herbert. Report from the Besieged City and Other Poems, 1983. Aimé Césaire. Return to my native land, 1939.

This paper was first given as the Michael Shea Memorial Lecture in Edinburgh, 10 September 2012. © International Futures Forum 2012 – some rights reserved. www.internationalfuturesforum.com

●

Volume 16 Issue 2 Summer 2019

Building resilient neighbourhoods with small doses of kindness

KI ND NE S S I N CO MMU NI T Y

Syeda Akhtar

Age UK Birmingham Healthy Friends Project Manager

The Healthy Friends social prescription service works with older citizens to address disabling loneliness and isolation. Local community groups for older people in East Birmingham were lacking. After listening to citizens’ voices and with the help of participants we created an ‘older people friendly’ community group that was accessible for all. The Healthy Friends monthly ‘get-together’ events, inspired by our late MP Jo Cox, aim to give isolated older people a taste of meeting strangers in a safe and welcoming environment and with the hope of enriching lives and nurturing lasting friendships’.

●

Having worked in health and social care settings over the last 15 years supporting the most marginalised communities in Birmingham, I came to realise that what made people ‘tick’ was their sense of belonging, of having purpose for living, and to appreciate the ‘simple things in life’. It seemed to me that people who had these qualities tended to bounce back from life’s adversities, remain optimistic and be more emotionally resilient.

Age UK Birmingham has been running in its current form since 2012. Its primary objective is to provide services across the city for all people over 50 and their carers. Our mission is to empower and enable older people to make informed choices and so retain control, independence and wellbeing, and so lead fulfilling and enjoyable lives. Healthy Friends social prescription has been funded by Big Lottery since March 2016 to work with older people in East Birmingham – an area with high levels of income deprivation and poverty – to provide practical, nonclinical holistic support with the aim of preventing escalation of healthcare needs. The project aims to ensure older people’s financial resilience, tackle their social isolation and loneliness, enable them to better manage their health conditions, and so reduce pressure on primary care. We realise that good health and wellness does not come from medicines alone; most of the time it comes from peace of mind, laughter, love and having meaningful social connections. But in East Birmingham, realising that older people had nowhere to go and meet to share stories, feel heard and validated, we decided to take it upon ourselves to create a monthly ‘get-together’

Volume 16 Issue 2 Summer 2019

friendship club for older people. We hoped this would become a place of sanctuary for those who needed it, and provide some social infrastructure in an area lacking the social glue, by bringing people and places together to enhance local social capital. Our evaluation report completed by independent consultants, LK Communications concluded that ‘… Healthy Friends’ approach recognises the importance of community by helping people to attend group activities in their neighbourhood and encourage inclusion of others in this. They also encourage older people to volunteer and mobilise in communities.’ The Healthy Friends service has allowed older people to meet in its micro-communities, safe and friendly places where it’s ‘OK to not be OK’ or to discuss feelings and worries without them being judged or medicalised. For many, just talking was enough to improve mood and quality of life. Someone who had accessed our service for basic needs but who subsequently attends the group regularly commented: ‘I had someone to talk to and talking has helped me greatly. If it wasn’t for Healthy Friends I would have been stuck in my own home.’ 11

KINDNESS IN COMMUNITY

Building resilient neighbourhoods with small doses of kindness

contribute to society, to share memories and talents with likeminded people and to foster connections. We human beings tend not to sense our strength until someone needs us to lift something; we don’t feel intelligent until someone asks us to solve an issue; we rely on the needs of others to remind us what we’re capable of.

Members of the Healthy Friends group on a trip to Stratford-upon-Avon

As they learn to co-exist with their neighbours, and make meaningful connections with like-minded local people, participants start to develop hope and a sense of purpose. The warmth and love this generates can make difficult times feel easer – perhaps even beautiful. But most of all, by knowing that they can be empowered, it can restore faith in themselves in formerly isolated people. Ours is obviously a strength-based approach model (see www.nurturedevelopment.org/asset-basedcommunity-development). As a senior clinical practitioner commented: ‘It was lovely to see four of my patients there [at a celebration event] enjoying themselves and getting on with enjoying their lives and forgetting about their illnesses for a while.’ GPs and health professionals have commented on the impact of our service: ‘A lady who had diabetes, she wouldn’t go out of the house she was so shy and isolated. When I first saw her, she wouldn’t let me touch her [feet]. After I had been able to help her with her diabetes and foot care, I handed her over to the Healthy Friends team for ongoing lifestyle support as well as to address isolation. And they got her out of the house and got her finances sorted. When I saw her, she said “I’m just going to get my nails painted at an activity day”. This is someone who wouldn’t even let me touch her [feet] when I first met her. I would never have the time to achieve that – it’s great to have the project to refer people to.’ Health care assistant

‘It’s a resounding “Yes” for reducing isolation. The project gets people out and interacting. They sit and have nice chats with people; they make them feel wanted and loved.’ GP

The Healthy Friends monthly get-togethers enabled the older person to feel alive again, and gave opportunities to

How do loneliness and social isolation differ? A person feels lonely when there is a gap between the amount of social contact they want and the amount they have. It is a subjective response and refers to how they perceive the quality of their lack of relationships. Social isolation on the other hand is an objective measure of the number of contacts a person has. It is about the quantity rather than the quality of relationships. Some people choose to have a small number of contacts and, whereas loneliness is never desired and the feelings can take a long time to change for the better, being socially isolated can be overcome relatively quickly simply by increasing the number of people they are in contact with (Loneliness, Age UK website). Social ties and bonds are very important to people, because they make us feel valued and supported. However, in today’s society, for an ageing population in a digital age, moments of real connection and warmth can feel extra special precisely because they don’t get that many: many families no longer live close by, friends are few or absent, older people are often bereaved, with multiple long-term health conditions and frailties, lacking accessible transport and financial resources. Therefore human interaction is more vital than ever before and takes enormous courage for an isolated and lonely older person. For them to come out of their comfort zone and meet strangers can be a huge milestone.

We need to talk about loneliness Loneliness is a serious taboo. As a result, suffering in silence is having an adverse effect on the health and wellbeing of millions. Loneliness can be as harmful for our health as smoking 15 cigarettes a day (Loneliness, Age UK website). 3.6 million older people in the UK live alone and more than 2 million of them are aged 75+ and for many, their feelings of loneliness and emptiness are heightened at Christmas and other special family-gathering events. It is a real confidence booster for older people to realise they can re-invent their lives, regain control and independence and make new friends at any stage in their

●

Volume 16 Issue 2 Summer 2019

KINDNESS IN COMMUNITY

Building resilient neighbourhoods with small doses of kindness

lives; that they have something to offer and a new sense of purpose to live again. A health care assistant who referred patients to our service commented: ‘One lady now gets out regularly – these sort of things we take for granted, but she wouldn’t have had the confidence without Healthy Friends.’ A regular older person at our coffee morning get-together said: ‘The coffee mornings helped me to improve my social activities. I used to be in my shell until I came here.’ Another member at the coffee mornings said: ‘I feel less lonely – I don’t mix very well but I feel comfortable here and I feel far better now. I feel revived and have something to think about. I’ve made friends with two others and have exchanged phone numbers.’ Our evaluation found that attending Healthy Friends events gave people the sense of purpose, and to be happy and fall in love with being alive again. They valued opportunities to be active and use their senses to interact with other people, exchanging stories along their life journeys, and to discover that people who once were strangers were now friends. Small acts of kindness that support older citizens with non-medical issues, or merely listening to their woes meant the world to them. Surrounded by support, love and empathy from staff and peers, simple acts of social engagement changed negative thoughts to positive ones – even if only for a moment. So far we have worked with just over 430 older people with low level and intense case management work. Using the UCLA Loneliness Scale (a short scale of four questions designed to measure subjective feelings of loneliness and

Personal resilience for me, you and us A residential workshop at Schumacher

College, Devon, with Dr Chris Johnstone and Professor David Peters

9th–13th September 2019

●

Volume 16 Issue 2 Summer 2019

Service-user feedback

social isolation, Russell et al, 1980) to measure baselines on loneliness and isolation we found that 49% have reduced their isolation and feel more connected. It seems that through kindness, compassion, hope and time from strangers we can tackle the epidemic of a lonely society and reignite community spirit. If ‘it takes a village to raise a child… and to live and age well in later life’, and ‘no man is an island’, we must continue to co-design and collaborate with stakeholders in public, statutory and third sectors. If we serve our communities and can help others regain hope, then if this timeless value system runs true to form, help will be reciprocated in the time of need and so create a community where we can all age well and flourish.

References

Loneliness. Age UK website. Available at: www.ageuk.org.uk/information-advice/health-wellbeing/loneliness (accessed 24 May 2019). Loneliness and isolation: understanding the difference and why it matters. Age UK website. Available at: www.ageuk.org.uk/ourimpact/policy-research/loneliness-research-and-resources/lonelinessisolation-understanding-the-difference-why-it-matters (accessed 24 May 2019). Russell D, Peplau LA, Cutrona CE (1980) The revised UCLA Loneliness Scale. Los Angeles, CA: University of California.

At a time of uncertainty in our world, the learnable skills of personal resilience strengthen our capacity to deal with difficult situations and rise to the occasion. This course focuses on ways to cultivate resilience in ourselves (me), in other people (you) and within the teams, groups or communities we belong to (us).

For details see www.schumachercollege.org.uk/ personal-resilience

Self-compassion and resilience for healthcare professionals S E L F-CO MPAS S I O N

Kai Krüger

Rites of passage guide; educational trainer, Faculty of Family Medicine, University of Freiburg

This article is about the possibilities of building selfcompassion through resilience in healthcare professionals to help them face distress. It raises the question of whether promoting resilience is relevant in healthcare professionals and proposes a robust approach to building resilience and explains its framework.

I trained as a rites of passage guide before my medical education. Consequently my perspective on its educational and professional structures recognised the importance of supporting life transitions, and viewed resilience as a key factor in sustaining people who help others. Having developed ways of supporting their self-care, I now run seminars, communication trainings and workshops on resilience for healthcare professionals.

Introduction

An analysis of need

More than 20 years ago my aunt, who is a pediatrician, told me she had chosen the most beautiful profession in the world. I didn’t quite understand what she meant at the time, about human connection, authenticity, love and faith as essential qualities of a doctor. But now, after training and working as both physiotherapist and doctor, I agree with her: helping and supporting others is one of the most satisfying and inspiring jobs I can imagine. Having said that, aspects of this work too often neglected or even surrounded by taboos are health professionals’ own self-care and emotional wellbeing. I certainly remember many times when giving advice to others was easier than having an honest confrontation with myself. But if you can’t help yourself, how can you help others? Though it is legitimate and important to remind others about their need for self-care, professionals suffering burn-out or addiction, mental and somatic illness, who are not enjoying life or working with others, need to discover selfcompassion. In this article I will share my journey with you, say why I chose to address the resilience of people who study and work in healthcare, and present a framework for doing so.

Is building resilience actually needed for healthcare professionals? The research illustrates why we must. Rotenstein et al (2016) reported the prevalence of depressive symptoms among a total of 120,000 medical students was 27.2% overall, with some variation between different universities depending on their system of grading. Many other authors report on the prevalence of psychological illness among healthcare students. A 2015 systematic review found the rate of depression among resident physicians was 28.8% (Mata et al, 2015), and among resident surgeons Dimou (2016), who gave the prevalence of burnout at more than 50%, identified a lack of programmes for supporting them. By comparison, the estimated overall prevalence of depression in the general population is only 4.4% (WHO, 2017).

Building resilience for healthcare students and professionals Self-compassion is a key element for building resilience. In my own experience and that of friends and colleagues, self-care was seriously lacking. I wanted to do something

●

Volume 16 Issue 2 Summer 2019

SELF-COMPASSION

Self-compassion and resilience for healthcare professionals

Eventually, they come back, sit with the others again and share what has happened. The following sections introduce the foundational elements of this work.

Council and its implications for modern healthcare

The dandelion: a powerful image of resilience

about this but I didn’t know how to. While one option would be to protest against the organisational factors we are facing (Balme, 2015), I chose instead to find ways of supporting individuals, and their medical community to deal better with the impact of the daily challenges faced in the healthcare system. This work took me several years and as the approach continually grows, evolves and changes it is still far from complete. At first, the concept of resilience, though fascinating, was hard for me to grasp: easy and nice to talk about, yet difficult to create a clear concept of it. For instance, I thought at first that one simply had resilience or not. The American Psychological Association (2019) defines resilience as ‘the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress’. Among its various suggested processes for building resilience are ‘making connections’, ‘looking for possibilities of self-discovery’, ‘taking care of yourself ’, ‘developing realistic goals’ and ‘moving towards them’.

A resilience-building framework The approach for building resilience that I offer is specifically designed for healthcare professionals. Depending on available time and resources, the aim of these seminars is to initiate participants – doctors, or nurses, or psychotherapists – to talk about real experiences and have them affirmed by their peers. Simply put, people gather in a safe and respectful environment, share with Resilience others what work in matters to healthcare them, then go out into nature to contemplate the things that they feel are important.

Figure 1: The four aspects for fostering resilience in healthcare

●

Volume 16 Issue 2 Summer 2019

Council has been used in a variety of environments – seminars, schools, companies and conflict zones (MehlMadrona, 2014) – as a non-violent, non-hierarchical form of communication (Zimmerman and Coyle, 1996). It calls for authentic self-expression through active listening in a secure and stable group setting. It is unusual for professional helpers to talk about themselves, and they often need initially to overcome their discomfort with its non-directiveness, and realise that for the topic being addressed there can be no clear ‘diagnosis’ or concrete conclusion at the end. However, if a non-judgemental attitude can be maintained it offers a space for participants to express feelings on difficult issues without being judged or feeling overloaded with ‘solutions’. A wonderful example was a physiotherapy student who sang a childhood song, a fond memory of a time before his parents divorced. The voice was clear and strong, and tears were flowing. Group experiences such as these are an important encounter with authentic communication and self-compassion. Although right after the council session, other participants tried to ‘help’ that person, the one singing got to experience their feeling and have them witnessed without others trying to ‘fix’ them or offer ‘solutions’. The university programmes offered at the Hogeschool van Amsterdam and the University of Freiburg, described below, provide an excellent framework for experiencing compassion and interconnectedness.

Forest medicine and its implications for modern healthcare Historically, in difficult times human beings have sought solace by re-connecting to the natural world. This experience may have in it elements of consolation and atonement – with oneself and with the surroundings. In recent years, as researchers confirm the benefits of time spent in forests on physical (Lee et al, 2017; Li and Kawada; 2011, Ochai et al, 2015) and mental health (Ochiai et al, 2015, Li and Kawada, 2011), western medicine is finding a rational framework for being in nature and even of measuring its effects. Having these basic human elements supported by research and academic institutions is a wonderful trend and I hope it will grow and consolidate.

Rites of passage work and its implications for modern healthcare Rites of passage work is a field put forward in western cultures by Foster and Little in the 1970s (Foster and Little, 15

SELF-COMPASSION

Self-compassion and resilience for healthcare professionals

showing the university in a good light. Probably, the ceremony is more important for parents than it is for graduates. And so it might be reasonable to assume that this ceremonial confirmation of medical training has nothing in it of the initiatory experience such a momentous transition actually requires. If so, medical education, lacking such a crucial right of passage, turns healthcare professionals out into their adult profession incompletely initiated.

Reflections on implementing resilience programmes

The dandelion can grow in the most difficult of circumstances

1994). Using anthropological methods they looked at various indigenous ceremonies and social systems with the question of how these societies enable their youths to become responsible adults who can play a full part in a well-functioning society. Supported by the works on rites of passage of van Gennep (2013) and Joseph Campbell (2004) on mythology, they hypothesised common and core elements for transitioning into adulthood: initiation, separation and return. These three phases, essentially, are what Joseph Campbell coined as ‘the monomyth’ (Campbell, 2004).

❛

The approach for building resilience that I offer is specifically designed for healthcare professionals

❛

Medical training is long and demanding, and as a consequence of my own training I came to inhabit a very specific role. Subsequently I have arrived at an understanding of how this role has arisen and why it has now become part of me. As a rites of passage guide, I perceive the medical training as a time of transition, almost like a journey into a new life, during which the role of ‘healer’ gets modelled by training and shaped by role models, both positive and negative. This is the resource one draws on as the heavy responsibility of a doctor’s work is conferred at graduation. At a German medical graduation ceremony there are speeches, drinks and food, and in my case reflections on how well the students have performed compared with other universities, mainly with the aim of 16

Our program KoSeiM – Kommunikation and Selbsterfahrung in der Medizin (translating as communication and self-discovery in medicine) at the University of Freiburg has been presented at the German conference for medical education (Krüger, 2015). In this optional course, 10 students met for three sessions of three hours to share and reflect on their positive and negative experiences of medical education. The work included identifying positive role models and exploring coping strategies for the many challenges they experienced, and sometimes critical discussion. The participants had a constant struggle with the feeling that ‘in the time I am sitting here I could study another three hours for another exam’. Having said that, during the same communication training some students opened up about a suicide in their community. For some, it was the first time this loss had been addressed and the support from the group was perceived as helpful and soothing. Resilience programmes have been implemented for physiotherapy students at the Hogeschool van Amsterdam, and for medical students at the University of Freiburg in several, semester-long formats. The course was supported and organised by the department of family medicine of the University of Freiburg free of charge, yet in my experience, offering resilience building programmes meant we received a lot of hesitant looks, sly jokes and resistance from people working in healthcare. Most obvious are the organisational challenges of finding curriculum time and financial backing. Moreover the medical community needs a narrative – in language and symbol – that can open up the self-care space to medical students as a requirement for sustaining wellbeing, health, good practice and a long career. In my experience the language has to be very clear and academic, and the possibility of obtaining a certificate at the end of a course seems to raise the acceptance among the student community. On the other hand words that sound ‘touchy-feely’ will act as a deterrent. I well remember an incident at the Hogeschool van Amsterdam, where the comment to ‘speak from the heart’ resulted in a massive disapproval of the suggested council-style element. In summary, the process of implementation needs time and patience, reciprocal support and persistence from the people who promote it. Nevertheless resistance will be faced, sometimes overcome, and sometimes not. © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

SELF-COMPASSION

Self-compassion and resilience for healthcare professionals

Perspectives and outlook Despite the obstacles I will continue to promote resilience as an important resource and necessary competence for healthcare professionals. For the present our seminars are privately funded. This year though, for the first time, I was invited to speak about resilience at a conference on integrative medicine for medical students in Germany at the University of Witten/Herdecke’s summer school. The recognition of widespread burnout and the demographic shifts and chronic diseases proliferating requiring more biopsychosocial approaches is driving changes in the content of medical training. Medical curriculae are now widely under review, and this potential for reformation, will, I believe, include a far greater emphasis on the resilience of patients and their doctors. Yet there is much to do before the vision, inspired by my aunt, of a medical community for whom being a doctor is ‘the most beautiful job in the world’. In achieving this the essential qualities of human connection, authenticity, love and faith remain for me important and central.

References

American Psychological Association (2019) The road to resilience. Available at: www.apa.org/helpcenter/road-resilience (accessed 11 May 2019). Balme E (2015). Doctors need to be supported, not trained in resilience. BMJ 351. Campbell J (2004) The hero with a thousand faces: commemorative edition. Bollingen series. Princeton, NJ: Princeton University Press.

Gesellschaft für Medizinische Ausbildung (GMA) und des Arbeitskreises zur Weiterentwicklung der Lehre in der Zahnmedizin (AKWLZ). Düsseldorf: German Medical Science GMS Publishing House. Lee I, Choi H, Bang K.-S, Kim S, Song M, Lee B (2017) Effects of forest therapy on depressive symptoms among adults: a systematic review. International Journal of Environmental Research and Public Health 14, 321. Lee J, Tsunetsugu Y, Takayama N, Park B-J, Li Q, Song C, Komatsu M, Ikei H, Tyrväinen L, Kagawa T, Miyazaki Y (2014) Influence of forest therapy on cardiovascular relaxation in young adults. [Online]. Evidence-Based Complementary and Alternative Medicine. https://doi.org/10.1155/2014/834360 Li Q, Kawada T (2011) Effect of forest therapy on the human psycho-neuro-endocrino-immune network. Nihon Eiseigaku Zasshi 66, 645–650. Mata DA, Ramos MA, Bansal N, et al (2015) Prevalence of depression and depressive symptoms among resident physicians: a systematic review and meta-analysis. JAMA 314 (22) 2373–2383. Mehl-Madrona L, Mainguy B (2014) Introducing healing circles and talking circles into primary care. Perm J 18, 4–9. Ochiai H, Ikei H, Song C, Kobayashi M, Miura T, Kagawa T, Li Q, Kumeda S, Imai M, Miyazaki Y (2015a) Physiological and psychological effects of a forest therapy program on middle-aged females. International Journal of Environmental Research and Public Health 12, 15222–15232. Ochiai H, Ikei H, Song C, Kobayashi M, Miura T, Kagawa T, Li Q, Kumeda S, Imai M, Miyazaki Y (2015b) Physiological and psychological effects of forest therapy on middle-aged males with high-normal blood pressure. International Journal of Environmental Research and Public Health 12, 2532–2542. Rotenstein LS, Ramos MA, Torre M, Segal JB, Peluso MJ, Guille C, Sen S, Mata DA (2016) Prevalence of depression, depressive symptoms, and suicidal ideation among medical students. JAMA 316, 2214–2236. Van Gennep A (2013) The rites of passage. London: Routledge.

Dimou FM, Eckelbarger D, Riall, TS (2016) Surgeon burnout: a systematic review. Journal of the American College of Surgeons 222, 1230–1239.

WHO (2017) Depression and other common mental disorders: global health estimates. Geneva: World Health Organization.

Foster S, Meredith L (1994) Vision quest: Sinnsuche und Selbstheilung in der Wildnis. Munich: Goldmann.

Zimmerman JM, Coyle V (1996) The way of council. Vol 2. Las Vegas, NV: Bramble Books.

Krüger K, Lim D (2017) KoSeiM – Kommunikation und Selbsterfahrung in der Medizin. In: Gemeinsame Jahrestagung der

●

Volume 16 Issue 2 Summer 2019

A simple model to find patient hope for positive lifestyle changes: GRIN H O PE AND L I FE S T Y L E

Jen Unwin

Clinical psychologist

David Unwin GP

A simple model is presented as a template for conversations with patients that inspire hope and facilitate positive lifestyle changes. The model derives from positive psychology and solution-focused therapy. The approach focuses on four steps: patients’ goals, resources, self-chosen next steps and shared noticing of success. Ideas are described for trying out the model in practice. These simple concepts can also be applied more widely, resulting in more hopeful and successful team meetings, family discussions and personal development plans.

We work together in a GP practice to bring psychology into the GP realm. We realised that psychological theory can seem complex and time consuming to translate into general practice. However, a large proportion of consultations are for physical and mental health conditions exacerbated by behavioural/lifestyle factors such as smoking, alcohol consumption, inactivity and poor nutrition. Doctors often lack the confidence and competence to address these issues in clinic, assuming a lack of patient motivation or fearing opening a can of worms in an all-too-short consultation. The result can be worsening wellbeing, repeat consulting and poly-pharmacy. We have devised a simple four-step plan that we have been using in 10-minute GP appointments for more than 15 years. It enhances the hope that people have for achieving their personal goals and hence their ability to make significant and lasting positive changes in their wellbeing and health. Specifically it is part of an approach that has helped us achieve drug-free remission for 57 people with type 2 diabetes, along with significant practice drug budget savings (Unwin and Unwin, 2014).

He is the best physician who is the most ingenious inspirer of hope. Samuel Taylor Coleridge

Hope is what makes us strong. It is why we are here. It is what we fight with when all else is lost. Pandora

The importance of hope Hope has been defined as the belief that pathways exist towards our desired goals and that we have the motivation and skill to pursue those pathways. Hope is the belief in a preferred future. A positive psychology researcher, Charles Snyder (2002), summarised the research in this area. Hope is a major component of wellbeing and adjustment to adversity. High hope individuals have greater self-reported wellbeing and health. They are actually less likely to get ill

and cope better if they do (Unwin et al, 2009; Billington et al, 2008). They consult less. They even live longer. Hopeful people are happier and happy people do better on a whole range of metrics related to health and wellbeing (Diener and Chan, 2011; Unwin and Dickson, 2010). Perhaps that is not too surprising. However, what is surprising is that the powerful effects of hope on wellbeing are so rarely harnessed in healthcare settings. In fact, it is often the exact opposite. Consultations focus for the most part on what is wrong with people (symptoms) and possible risks to health. This negative emphasis can result in greater patient anxiety, unnecessary prescriptions and tests that do not lead to enhanced patient self-efficacy but instead increase learned helplessness. Another way to understand the importance of hope is to look at research into the power of the ubiquitous placebo effect. The placebo effect is hope in action. Doctors

●

Volume 16 Issue 2 Summer 2019

HOPE AND LIFESTYLE

A simple model to find patient hope for positive lifestyle changes: GRIN

should seek fervently to harness the power of hope in their consultations, by enhancing belief in an achievable preferred future (Frank and Frank, 1993). As a result of focusing on hopeful consultations patients become heroes rather than heartsinks, and clinicians are uplifted and sustained by hearing stories of success on a daily basis (Unwin, 2005).

A simple model to enhance hope: GRIN (Goals, Resources, Increments, Noticing) Our simple conversational model is based on enhancing hope by using questions from a solution-focused approach (O’Connell, 2012). Solution-focused therapy started as a form of brief family therapy in the US but is now widely used in health, education and business settings. This approach assumes that people already have the knowledge and skills to move towards their goals or ‘preferred future’ and that the helper’s role is to uncover that confidence and motivation by asking useful questions. The approach we have developed in primary care has four stages that can be pursued in any order but always keeping in view an understanding of the person’s goals or ‘preferred future’. We have used the techniques described in direct patient work, groups and even remote digital interventions to help people with type 2 diabetes achieve significant improvements in control (Unwin and Tobin, 2015; Unwin and Unwin, 2014; Saslow et al, 2018).

Step 1 Goals

The first and most important step is establishing what ‘better’ would look like to the patient.

‘What are your best hopes for our consultation today?’ ‘If in six months’ time, things were how you wanted them to be, what would that look like?’ ‘Are there any particular ways you would like your health to improve?’ Usually people will come up with concrete goals such as ‘I want to breathe better’ or ‘I want to have no pain in my knees’. The clinician will then find a rich vein of information, motivation and insight into the person’s values by following this up. ‘What difference would that make to your life?’ Patients then respond with something of importance to them. For example, someone might say ‘then I can help with my grandchildren more’ or ‘I could keep walking the dog’. This then allows the clinician to feed back to the patient what they have now learned. For example, ‘It sounds like family is really important to you’. A very useful question in this approach is ‘what else?’ allowing more rich information to emerge. ‘You would be able to keep walking the dog. What else?’

Step 2 Resource

The second stage is to explore what is already working in the patient’s life that is going to help them make progress. This enhances the person’s belief in their abilities to make changes. An alternative is to ask for an example from the

Figure 1. The GRIN model

●

Volume 16 Issue 2 Summer 2019

HOPE AND LIFESTYLE

A simple model to find patient hope for positive lifestyle changes: GRIN

past, eg ‘Have you ever managed to lose weight in the past? What seemed to work then? ‘Who is supporting/helping you right now? Or might do so?’ ‘What helps your <symptom> now? When are things even slightly better?’ ‘What has helped you in the past?’ ‘What personal strengths do you have that could help?’ ‘What else?’ Sometimes the strengths question is difficult for people to answer. A different slant can be to give the person a sincere compliment based on what you already know of them, or to ask what a loved one would say. ‘I know you are a very determined/organised/ positive/caring person and that this will help you to make good progress.’ ‘What would your wife/best friend say are your best qualities?’ ‘What else?’

Step 3 Increments So many people have goals they never realise because they fail to take those first small steps towards their goal. So the third stage of the conversation is either about what would be happening if the person first started to make progress and what they might notice when they do, or committing to some specific ‘small steps’ they think would be helpful. ‘What will be the next small sign that you are making progress?’ ‘What will your wife/best friend notice that will tell them you are making progress?’ ‘What will tell us you are making progress?’ ‘Bearing in mind your goal, can you think of a small change you can easily make before we meet again? ‘ ‘What else?’ This last question can lead to permission for regular measurements and tests such as waist circumference, weight, BP or HbA1c, for example.

Step 4 Noticing

So often the medical paradigm is about noticing negative things like pain or depression and asking how bad it is. In this model we are trying to shift the focus to positive experiences by asking what is working and what a person has noticed about any improvement. These questions are very useful at follow-up appointments to keep the conversation ‘progress focused’.

‘What is better since we last met?’ ‘What difference has that made to you? Who else in the family noticed?’ ‘What seems to be working well for you right now?’ ‘What else?’ The healthcare professional should also be attuned to noticing progress and giving positive feedback. ‘I have noticed that you are smiling more/came without your stick/are breathing better this week.’ ‘Your <test> tells me that you have been successful in making important changes…’ ‘Wow! You have lost 3" off your waist. How did you do that?’ (get details) We have found that patients respond really positively to graphs of progress printed from the EMIS GP computer system (see example below) and like to show family and friends how much progress they have made. In a nutshell noticing supplies feedback

GRIN case study (based closely on a patient of David’s, with consent)

63-year-old ‘Carol’ went through the practice diabetes screening programme and was found to have a raised HbA1c of 46 mmol/mol (NR <42mmol/mol). The practice nurse made her an appointment to discuss this with a GP on the 24 May 2018 when she weighed 110kg. She had a background of low mood, severe brittle asthma and bronchiectasis and so was a frequent attender.

Patient’s individual health Goals On being asked:

‘Carol, in general what would you most like to see improve in your health?’

She answered:

‘To be able to breathe better – I get really scared at times.’

Note that she was not really interested in her raised HbA1c – that just made her even more worried. Instead it was better to pursue a positive, more solution-focused line by asking: ‘If you could breathe better what difference would that make to your life?’

She answered:

‘Well, it would be so great to worry less about my breathing – sometimes I wonder where this will all end…’

Next question:

‘What else would be better if you could breathe more easily?’

●

Volume 16 Issue 2 Summer 2019

HOPE AND LIFESTYLE

A simple model to find patient hope for positive lifestyle changes: GRIN

She replied:

‘I help look after my three-year-old grandson and I would love to be able to be more active with him, he’s so lively!’

Note that the tone of the consultation improves as we move from fears to hopes. Also, the more someone adds detail to a preferred future, the more likely they are to believe in it and want it. My next question would be around what activities breathing better might allow her to share with her grandson. The more she inhabits a preferred future the more likely she is to make the necessary changes to achieve her goals. Only then will I ask:

‘In your experience what might help you breathe better?’

Note we are still not talking about my goal around the HbA1c because it’s not hers. But with patience we will get there. I am trying to find a shared goal. Her response:

‘What a great idea! What do you hope to be telling me in two weeks’ time? How will you/I/your family know this is working well?’

Noticing

Sometimes we wonder if this is the most powerful part of positive psychology. Noticing both what works and crucially what feels better seems to be central to further success. The classical medical paradigm is the opposite of this, focusing as it does on symptoms of disease like pain or depression. The only way to get a doctor’s attention is to moan louder! Perhaps in this way, we make not just the patients but ourselves more miserable. In this case Carol agreed to be weighed again after three weeks. Looking at the graph in Figure 2 you can see she had lost an amazing 2.8 kg. ‘Carol that is amazing, well done! I’m really interested – have you noticed any other improvements yet?’

‘Yes my family say I’m more cheerful – it feels good to be more in control and I didn’t miss the biscuits as much as I expected.’

‘Well it’s obvious I need to lose weight, stairs are a nightmare for me!’

Bingo!

‘What else?’

Resources

It’s important to resist the urge to give advice before further exploring the strengths and wisdom your patient already has.

‘If you have ever lost weight before what has helped you succeed?’

‘Being organised seems to help me, getting the fridge ‘sin free’ for a start.’

Figure 2: Patient’s weight over 24 months GRIN model as used in Carol’s case

That completed this GRIN cycle; now the process can be repeated to build on her success.

‘What else?’

‘Also, I’m quite a fan of social media so I found some good advice last time and Facebook can be a support too.’

Increments

So many of us have a grand scheme but those first steps towards a goal are the most important.

‘Carol can you think of something you can commit to right now, today, to help you lose weight? ‘

‘Really I suppose in view of the diabetes thing the nurse mentioned, the biscuits and cake should be the first to go.’

Now at this point some strong reinforcement can help, perhaps discuss exactly how this is to be achieved and agree a next appointment to re-weigh and see how it’s going.

We see noticing as closely related to feedback, an important part of motivation. In Carol’s case printing off her weight graph supplied more positive feedback as I could point out she was the lightest she had been for over a year.

●

Volume 16 Issue 2 Summer 2019

‘Right Carol that’s biscuits and cakes beaten, what’s your next goal?’

‘I was wondering if perhaps I eat too much toast – I know it’s fattening.’

‘You’re right! How will you know when you’ve beaten toast? What will you be eating instead?’

It’s been a year now and Carol has lost more weight than ever before in her life. The two transient blips on her graph are due to courses of steroids for her asthma, but she didn’t end up in hospital once over the winter. She is pleased to notice it’s not just that she breathes better but she feels healthy. ‘What else is better?’

HOPE AND LIFESTYLE

A simple model to find patient hope for positive lifestyle changes: GRIN

‘My family are so proud of me! Oh and I buy smaller clothes now. And you know I don’t miss bread a bit, and yes I can bend over to play with my grandson easily these days. The best bit is to feel less scared and more in control of my own health!’

What about that raised HbA1c? It’s now 41mmol/mol, (in the normal range). This makes the point of how holistic a hope-based, patient-centred approach can be. Carol’s blood pressure is better too.

It is also worth noticing how this process affected me as her doctor. I have looked after Carol for more than 30 years, but it’s only in the last year that I have noticed what a resourceful, determined person she is. I feel it’s a cheat that she is so grateful to me because it has been her efforts that have made such a difference. These days I look forward to hearing how she is getting on. Cases like this give hope and energy back to the doctor and can improve healthcare professional resilience.

We mentioned using this approach in 10-minute appointments. We called it GRIN to help people remember the four components but in pressurised clinical practice it is fine to use any one or two of the four in a consultation. For instance, in a case with multiple morbidity, if all you manage is to explore your patient’s health goals or relevant resources your time is well spent. Practitioners who are new to this might have the goal of using a minimum of one of the elements in each case. A useful training exercise is to see how many times in a morning clinic you can give out a sincere compliment then notice how that affects your patient interactions.

Wider application of the model

solution. Most clinicians believe that taking a history detailing the causal events that led up to illness is always important in finding the remedy. In fact, though this may help understanding, sometimes it can hamper progress. For example, patients may have experienced extremely difficult childhoods but examining the details of just how traumatic can sometimes lead to people feeling worse. In a case like this, particularly if time is short, an alternative could be to notice resilience with a sincere enquiry about ‘toughness’ by asking, ‘that sounds so hard, I’m interested to understand how you managed to get through those difficult times?’ This may be an excellent prelude to exploring goals, and a much more productive and cheerful use of time than taking your patient through a very painful, detailed examination of half-buried trauma. In this way progress can be fast and sometimes surprisingly so. Practitioners must be ready to give up ‘advice’ and have faith in the patient’s expertise and strengths. The practitioner’s knowledge and experience is then used to support the patient’s efforts and progress. We have found this approach to be easily incorporated into a wide range of clinical scenarios. It is positive, patient-centred and less burdensome on staff. Surely, this is much needed in helping both patients and staff remain happy, resilient and well.

References

Billington E, Simpson J, Unwin J, Bray D, Giles D (2008) Does hope predict adjustment to end stage renal failure? British Journal of health Psychology 13 (4) 683–700. Diener E, Chan M (2011) Happy people live longer. Applied Psychology: Health and Well-being 3 (1) 1–43.

The process of shared goal setting, acknowledging what is already working, identifying the next steps and noticing progress is a simple model that can also be applied to meetings, supervision, appraisal, family and personal goals.

Frank J, Frank J (1993) Persuasion and healing. Baltimore, MA: John Hopkins University Press.

‘What are our best hopes for this meeting today?’ ‘Where do I/we hope to be this time next year?’ ‘What is already going well in our team?’ ‘What strengths do we have in the team?’ ‘What will tell me I am managing you better?’ ‘When have I noticed myself being at my best recently and how did I do that? ‘ ‘What have I/we been pleased to notice in the last week?’ ‘What else?’

Saslow L, Summers C, Aikens J, Unwin D (2018) Outcomes of a digitally delivered low-carbohydrate type 2 diabetes self-management program. JMIR Diabetes, 3 (3) e12.

Using a solution-focused approach challenges the traditional model that any problem must be understood and analysed in detail before progress can be made. It gets away from ‘diagnosing’ the problem to envisioning the

Malpass T (2018) The hope that I have: to remission and beyond. Print2Demand. www.print2demand.co.uk. O’Connell B (2012) Solution-focused therapy. London: Sage Publications Ltd.

Snyder C (2002) Hope theory: rainbows in the mind. Psychological Inquiry 13 (4) 249–275. Unwin D (2005) SFGP! Why a solution-focused approach is brilliant in primary care. Solution News 1 (4) 10–12. Unwin D, Tobin S (2015) A patient request for some ‘deprescribing’. BMJ 351 h4023. Unwin D, Unwin J (2014) Low carbohydrate diet to achieve weight loss and improve HbA1c in type 2 diabetes. Practical Diabetes 31 (2) 76–79. Unwin J, Dickson J (2010) Goal focused hope, spiritual hope and well-being. Social Scientific Study of Religion 21 161–174. Unwin J, Kacperek L, Clark C (2009) A prospective study of positive adjustment to lower limb amputation. Clinical Rehabilitation 23 1044–1050.

●

Volume 16 Issue 2 Summer 2019

Realistic hope – and its role in keeping us resilient in times of crisis

R E AL I S T I C H O PE

Catherine Zollman

GP; medical director, Penny Brohn UK

with

Jennie Evans

Advanced cancer patient and Penny Brohn UK client

Working with people affected by cancer can be emotionally demanding, but it is also very rewarding. Helping people relate to the future in a way that enhances, rather than diminishes, their experience of the present is important, but this should not involve unrealistic hopes that could set them up for later shock, disappointment and regret. We have come to call this helpful way of facing the future ‘realistic hope, and by discussing, exploring and understanding it better we believe that more people can be helped to find a way through the crisis of a lifelimiting illness like cancer.

●

I first became interested in holistic approaches to health as a medical student lucky enough to join the BHMA in its early days. I trained initially in medical oncology and immediately saw the potential of an approach that combined lifestyle support, conventional treatment and complementary therapies, even though the term integrative oncology hadn’t yet been invented. I now work at Penny Brohn UK, the leading charitable provider of complementary and lifestyle support for people with cancer, as well as continuing my part-time NHS GP and university teaching work. Catherine Zollman

I was diagnosed with Stage IV colorectal cancer on the 2 September 2015. On 21 September 2015 I walked through the doors of Penny Brohn UK for the first time, seeking to find out how I could help myself in the face of the cataclysmic life change I was experiencing. In the face of a now incurable diagnosis, I have learned to navigate as meaningful a path through the minefield of life with cancer as I can with the continued support of PB, and I now try to share my experience in the hope that it might help others. Jennie Evans

‘What is the most helpful way to think about the future?’ This question may seem rather abstract and philosophical, but if you are dealing with a potentially lifelimiting condition, it has a very practical and profound influence on everyday life. In our work at Penny Brohn UK, a charity which provides free holistic support and education to people affected by cancer, we grapple with this question daily, whether we are staff or clients. Many people are now supporting someone or living with a cancer diagnosis themselves. We’re living at a time where more people are being diagnosed, and often at a younger age, than ever before, but more are also living longer with the disease. It’s an area where positive psychology messages abound, and the ‘breakthrough treatments’ that seem

Volume 16 Issue 2 Summer 2019

just around the corner are still not a reality for most people. The connections between what we think or feel and our physical health are scientifically ever more convincing, so it feels as if there has never been a time when the answer to this question has been more relevant. We have started talking about ‘realistic hope’ as a way of helping people to navigate the present in a way that is grounded in reality, while enabling them to feel positive about life and the future, whatever that may hold. In this article, we explore aspects of realistic hope, and the factors that influence it, from two contrasting stakeholder perspectives: an integrative medical doctor working with people affected by cancer at Penny Brohn UK (CZ), and someone living with advanced cancer, who has used the services at Penny Brohn UK to help develop and foster realistic 23

REALISTIC HOPE

Realistic hope – and its role in keeping us resilient in times of crisis

hopefulness (JE). We have based the thoughts that follow on a conversational exploration of Jennie’s lived experience and Catherine’s years of clinical work in this field. We have chosen this observational and experiential style, rather than a literature-based review, with the aim of highlighting some of the more complex and subtle attributes and nuances that may enable individuals to move forward and hold their balance on the delicate tightrope of realistic hopefulness.

‘For many who cannot see hope, their vision is blurred because they believe they are unable to exert any control over their circumstances.’ ‘False hope is an insubstantial foundation on which to stand and weather the vicissitudes of difficult circumstances’ Jerome Groopman, Anatomy of Hope (2003)

Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all And sweetest in the gale is heard And sore must be the storm That could abash the little bird That kept so many warm. I’ve heard it in the chillest land, And on the strangest sea; Yet, never, in extremity, It asked a crumb of me. Emily Dickinson 1830–1886

What is ‘realistic hope’? Realistic hope, if one can maintain it, is a delicate tightrope to walk, the ‘sweet spot’ between the two polarised and limiting extremes of false hope and false hopelessness. When faced with a potentially life-limiting condition, it’s common for people to feel a huge sense of grief for the future they had always assumed was theirs for the taking, for the ‘life that was’. Like other forms of grief, this can sometimes manifest as denial. This kind of false hope refuses or is unable to accept that the future is going to be different from how one wants or imagined it to be, a belief that somehow there is a way back to that previously expected future. For others, where the loss of their expected future may end up being confused with the loss of any future (false hopelessness) it can manifest as depression. Both of these expressions can disable a person’s ability to move beyond grief, and will often prevent them from finding joy, meaning and connection in the rest of their lives.

Definitions of realistic hope If someone living with cancer can develop ‘hope without an attachment to a specific outcome’ it will allow them, though they may fail to realise a specific goal, still to hold on to the core of hopefulness that is so integral to wellbeing, and which Emily Dickinson so perfectly describes in her poem, above. For us goal-orientated, future-fixated humans to achieve this non-attachment to a fixed outcome, while remaining deeply invested in reaching the best outcome possible in the circumstances, is undeniably difficult, but it is perhaps the pinnacle of realistic hopefulness. Healthcare professionals helping patients or clients to find realistic hope, will have to support them compassionately as they come to understand and accept the uncertainty of their future and the many potential scenarios that might unfold. At the same time they will need to help them find reasons to be hopeful about life itself as precious and worthwhile. The various and ambiguous futures will not only include best and worst case scenarios but also some more probable outcomes. Each of these scenarios needs to be held as a genuine

●

Volume 16 Issue 2 Summer 2019

REALISTIC HOPE

Realistic hope – and its role in keeping us resilient in times of crisis

possibility, and discussed by the individual and their healthcare team as there may be important ways that they can exert some influence over which version of the future eventually unfolds.

What does realistic hope look like? Different people express their experiences of realistic hope in different ways. Some appreciate the difference between ‘probability’ and ‘possibility’, and find they can focus on ‘possibility’ in ways that open up a broader, more creative and dynamic relationship with the future. Some rediscover a more peaceful, balanced perspective where they feel more connected and more loving and compassionate towards themselves and the world. They may talk about coming to understand the difference between ‘healing’ and ‘curing’. For others realistic hope with its myriad branching possibilities and opportunities for change and post-traumatic growth brings a greater sense of aliveness and energy to everyday life. Hope is like the sun, which, as we journey toward it, casts the shadow of our burden behind us. Samuel Smiles, 1812–1904

A key factor in finding realistic hope seems to be an acceptance of reality with its inherent lack of true certainty about anything other than the present moment. The ability to appreciate and find meaning and value in living each day also seems to help people to stay realistically hopeful, even in the face of tragedy, extreme challenge or approaching death. We have summarised and explained these and the other six factors we have found most relevant below.

Eight key aspects of realistic hope

• • • • • • • •

Acceptance Appreciation Holistic outlook Sense of control Resilient thinking Connection Motivation Background resilience

Acceptance

Realistic hope does not require people to ‘be positive’, rather it arises when people accept their current situation, including their thoughts and emotions, without judgement but also without feeling defined by them or overlyattached to them.

Appreciation

Realistic hopefulness often involves a greater appreciation of the value of everyday experiences, both positive and negative – finding a reflective appreciation of both the ‘life © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

I had before’ and the ‘life I have now’ without falling into the trap of comparing one unfavourably with the other. The richness this brings seems to come with a sense of life as a gift, and of each moment lived with good intention as a bonus. On the other if someone feels aggrieved or ‘robbed’ of their ‘right’ to a fixed outcome this can make it harder to find hope and resilience.

Holistic versus mechanistic outlook and a focus on possibility versus probability

Statistical information like average life expectancy for a particular cancer can help people understand more about their likely prognosis, come to terms with their situation, and make certain decisions about treatment. However, the use of statistics in healthcare is predicated on a Newtonian view where the assumption is that if a study sample is big enough, people with similar demographics and cancer characteristics come to be seen as identical ‘billiard balls’ for whom average survival times will generally apply. For this Newtonian, deterministic mindset, the human body is subject to a linear, easily predictable progression of events, and the things that determine our health or otherwise are largely outside our control. An example would be the genetic theory of carcinogenesis whose natural conclusions tend to encourage fatalism (‘I have incurable cancer, so my lifespan will be whatever the stats predict’). David Servan-Schreiber (2011), a doctor and a cancer patient, describes how he escaped the ‘tyranny of statistics’. Whereas some people find themselves ‘counting down their days’ according to the survival rates they have been given, people, like him, who find realistic hope often adopt a more holistic mindset. They instead consider that what happens to their body is far less predictable and depends on emergent properties, which are more than the sum of their individual parts. According to the science of epigenetics, not all of the genetic messages written in our DNA are actively expressed, and the choice of messages which end up being selectively expressed is very much affected by lifestyle, social and environmental factors. Another relevant developing science is affective immunology (D’Acquisto, 2017), which studies the inter-relationships between our immune system and our emotional health. The complex interactions between our microbiome and our immune system is yet another example of a research area where there is a growing appreciation of more complex, evolving mind–body– environment dynamics. These post-Newtonian perspectives can give us a broader view of potential individual possibilities as opposed to averaged group probabilities. ‘When you change the way you look at things, the things you’re looking at change.’ Max Planck, physicist, 1858–1947

Control

From Jennie’s perspective, having some element of control is important in maintaining her realistic hopefulness. She describes how when she feels powerless, 25

REALISTIC HOPE

Realistic hope – and its role in keeping us resilient in times of crisis

The future depends on what you do in the present Chöje Akong Tulku Rinpoche, Kagyu school of Tibetan Buddhism tulku, 1930–2013

Resilient thinking

A growth mindset (Dweck, 2017) is a way of thinking about the future, which is conducive to finding realistic hope. A fixed mindset on the other hand encourages fatalism in the face of what becomes a seemingly hopeless situation. People with growth mindsets take in the full range of possible outcomes, including the best and worst situations that may arise, and then focus on what can be done to make a better outcome a little more likely. Dr Chris Johnstone (2019) describes this as flexible or resilient thinking. Resilient thinking also involves noticing that all along our lives there are ‘choice points’, where a number of factors, some of them under our control, influence ‘what happens next’, so that we are not necessarily trapped by our past or by our present. You can often choose your path, even in the final stages of illness Pat Pilkington (2016)

Connection

When we feel realistically hopeful, all potential eventualities can be discussed and it becomes more possible to connect and have ‘important conversations’ with the people that matter most. Connection is a key part of healing and thriving as a whole person. Kathryn Mannix and Atul Gawande both describe how our current ‘Age of Denial’ inhibits such important conversations, as people fear that the emotions and thoughts they are experiencing, but keeping a lid on, will be too upsetting for themselves and others to handle. The good news is, that once people do start having and benefitting from these conversations, it often gives others permission to do the same. Humans have an innate need for connection, whether this is to or through other people, animals, nature, music, art, a deeper purpose, or something bigger than themselves. Jennie describes below how realistic hope can connect her with the present moment. Even if this

involves a greater awareness of pain or difficulty, it can still enable her to be more authentic and more able to connect with others. Though denial can be a useful tool for some people, as Kathryn Mannix (2017) describes in one of her case studies, it is potentially damaging when driven by a fear of facing reality. This isolation and separation from others who may see a different version of the future can eat away at support, and can erode any truly shared enjoyment or experience of the ‘now’. Realistic hope enables people to prepare together for the worst and hope for the best, and can make it easier to explore different options with curiosity and purpose, redefining and adapting what it is that one is hoping for as life evolves.

❛

Humans have an innate need for connection, whether this is to or through other people, animals, nature, music, art…

❛

this contributes to her feeling more hopeless and that the reverse is also true. Feeling hopeless contributes to a sense of helplessness, and it is hard to maintain one’s hope without feeling somewhat in control. Appraising all the relevant options leads to better, more informed joint decision-making and therefore a greater sense of control. However, being realistically hopeful does not necessarily mean becoming involved in every shared treatment decision: in fact making an active choice to trust and not to question medics may be equally valid. With a holistic outlook the notion of healing (becoming more whole), as opposed to curing (getting rid of a symptom or disease), becomes something to hope for and something which is often more under an individual’s control.

Motivation

There is a fine line between hope and motivation. There is no question that having something to hope for, to aim at, is helpful when faced with cancer, and particularly when faced with a terminal diagnosis. There are thousands of stories of people who survived longer, so they could live to see their child born, daughter married, son graduate etc, but then died immediately afterwards. Though milestones held lightly can be useful to aim for, there are also many stories of people who weren’t able to reach them. So maintaining motivation without a specific target date offers more freedom to enjoy what there is in the here and now, without a sense of pressure, failure, guilt or self-blame.

Background holistic resilience

At Penny Brohn UK we use the Bristol Whole Life model (www.pennybrohn.org.uk/wp-content/uploads/2017/01/ General-Brochure-final-online.pdf) to help people reflect on their physical, psychological, emotional, social and spiritual resilience. People with a strong base of resilience in several of these areas seem to find realistic hopefulness easier to access. The shock of a cancer diagnosis can be profoundly destabilising and disabling. Whole life resilience helps people feel ‘safer’ by reducing the anxiety of flight and fight, or by pulling them out of despair and collapse. At Penny Brohn UK, in order to help people regain a deeper sense of security and wellbeing, we encourage good nutrition, physical activity, better sleep and relaxation, good symptom management, and provide the emotional and psychological support that can calm the body’s threat responses and nurture trusting, loving and meaningful connections.

●

Volume 16 Issue 2 Summer 2019

REALISTIC HOPE

Realistic hope – and its role in keeping us resilient in times of crisis

Attaining realistic hopefulness – Jennie’s perspective

Arriving at a place of realistic hopefulness takes time. Just how long depends on an individual’s circumstances, culture, age, and personality. Activities at Penny Brohn UK aim to calm and relax people so they can begin to see the possibility of realistic hopefulness. In developing appreciation for ‘what is’ and coming to feel realistic hopefulness, mindfulness is a fundamental tool. But it is important for some people – particularly those like me – to understand that acceptance and surrender, and attaining Zen-like calm and quietness, are not the only routes. Hoping is actually an energetic practice, and I find activities that generate energy are equally valuable, whether gentler pursuits like art or more active ones like walking or dancing. The important aspect is that the energy expended in the activity is less than the energy generated by it, whether mental, emotional, physical or spiritual energy. When it is, and the flow of energy is restorative and completing, it enables Emily Dickinson’s ‘bird in the soul’ to sing ever more loudly.

What stops people achieving realistic hopefulness?

As described above, realistic hope can be a useful perspective for people living in challenging situations, but for many it remains an elusive state. Why is this? A number of cultural, societal and practical barriers can get in the way in today’s world. Many of them are being addressed slowly by pioneering individuals who are looking for better ways to help themselves or other people stay resilient.

Eight key barriers to achieving realistic hopefulness

• • • • • • • •

Culture Exaggerated claims about treatment Medical pessimism Attitudes of friends and family The complementary/conventional divide Tyranny of the positive Unaddressed fears about death High levels of unmanaged distress

Culture

Autonomy has gradually become a key concept in the doctor–patient relationship. However, truth‐telling is far from being the norm in many countries in the world, despite widespread general agreement on the benefits of open communication between physicians and cancer patients. In many cultures there is still strong resistance against disclosure of diagnosis and prognosis in cancer and other life-limiting conditions (Shahidi, 2010). Yet without truthful communication, realistic hopefulness is almost impossible to achieve and may not be a feasible, or even a desirable goal. Cultural sensitivity is essential, but culture should not be used as an excuse to make general assumptions about the appropriateness of concealment of

●

Volume 16 Issue 2 Summer 2019

prognosis. Individual preferences need be elicited, particularly where people are exposed to more than one culture.

Exaggerated claims about treatment

Often fuelled by the media, and exponentially increasing online information and social media, exaggerated claims abound. News (and fake news) of new or unconventional treatments can lead individuals to focus exclusively on the search for a cure, at the expense of accepting and addressing the reality of their situation. Alternative practitioners, as well as pharmaceutical companies and mainstream healthcare professionals, sometimes overstate the likely benefits and downplay risks. A degree of scepticism is justified whether towards ‘an ancient traditional discipline for strengthening the body and correcting underlying imbalances to eliminate cancer naturally’ or ‘a breakthrough new pharmaceutical agent that will be a potential major advance in targeting cancer cells’.

Medical pessimism

Patients with advanced cancer find it easier to remain hopeful if their oncologists are confident, collaborative, realistic and supportive and are prepared to give detailed information about prognosis and discuss a variety of options (Hagerty et al, 2005). However, many Penny Brohn UK clients (from all around the UK) still describe disempowering and patronising encounters where they felt hope was crushed by oncology professionals who repeatedly emphasised the incurable and progressively terminal nature of cancer. Perhaps the motive stems from a fear of raising unrealistic expectations and fuelling false hope, particularly when someone asks about complementary or lifestyle approaches that an oncologist might worry will lead ‘their patient’ to reject conventional treatment. This sort of disempowering message and the breakdown in the doctor-patient relationship that often follows can have an anti-placebo (or ‘nocebic’) effect. If as a result a patient becomes depressed (depression is associated with increased mortality) or hopeless or, having been told that lifestyle was irrelevant, adopts unhealthy behaviours, this could result in a self-fulfilling worsening of prognosis. That being said, many oncologists and GPs are acutely aware of and skilled in their role of facilitating a helpful, realistically hopeful attitude in their patients – see below.

Consultant medical oncologist perspective

When patients hear they have cancer, they’re faced with a bewildering amount of information – some helpful, some less so. Beyond everything, in this confusing array of advice and anecdotes, patients look for hope. As an oncologist, it’s important for me to help patients and their loved ones navigate this new complex world they find themselves in – and to find realistic hope and goals. In my experience, this helps bring positivity which in turn helps patients cope with the many, many trials and tribulations of having cancer treatment and ultimately get the best out of their treatment.

REALISTIC HOPE

Realistic hope – and its role in keeping us resilient in times of crisis

GP perspective

To me, hope is not only based on everything being great, but ‘being hopeful’ means that whatever life throws at us we trust we will be supported and not alone. Encouraging hope is crucial to being a GP as you are letting patients know that you are with them and there for them and that what we hope for through an illness may change from cure to symptom management and that that is all OK.

Attitudes of friends and family

Just as it is difficult to maintain realistic hope if healthcare professionals are either overly optimistic or overly pessimistic, it can be difficult if people who are close to you have a different way of dealing with the future. Sometime a person with a diagnosis of cancer is ready to have ‘important conversations’ but their friends and family are not. Sometimes it is the other way around. In either case, it is difficult to maintain realistic hope on your own, so connecting with others in similar situations through books, social media and the internet and hearing from other people living with life-limiting disease who ‘tell it how it is’ and still manage to find joy, meaning and fulfilment can be inspirational (Sabbage, 2017; You Me Big C Podcast, 2018–2019).

The complementary/conventional divide

Hostility between the worlds of conventional and complementary medicine can fuel false hope. Vulnerable and confused people without easily available and reliable sources of balanced unbiased information are often forced into a polarised, black and white, ‘either/or’ situation where they feel they must choose to pin their hopes on one approach to the exclusion of the other. Independent integrative practitioners who are trained in lifestyle approaches as well as both conventional and complementary disciplines can be very helpful in helping people bridge this divide and supporting them to get the best of both worlds.

Tyranny of the positive

While there is hard science that demonstrates the interconnections between mental and physical wellbeing and confirms the potential of the placebo effect to significantly alter physical health parameters (Marchant, 2016) there are schools of thought that take this to the extreme and suggest that ‘if you 100% believe in an outcome, you can make it happen’. This has the obvious corollary that ‘you are responsible if you don’t get that outcome’ and that ‘acceptance of your situation = giving up’. From the perspective of someone like Jennie, who is living with advanced cancer ‘this attitude/belief exaggerates our own importance, power and control over our destiny and can put a huge weight of responsibility on our own shoulders that can be crushing and very tiring to carry.’

[false hope can be fuelled by] ‘glib assertions… that the power of the mind is limitless in influencing the clinical outcomes of virtually all diseases’. Groopman, 2003

Unaddressed fears about death In our ‘age of denial’ (Mannix, 2017) about death and dying many of us find the topic profoundly disturbing because we lack the skills and experience to discuss it wisely and openly. An honest appraisal and acceptance of all potential outcomes is an essential element of living with realistic hope, so as long as one (eventually inevitable) outcome is effectively a taboo subject, and cannot be fully explored, a sustainable state of realistic hope remains unattainable. Thankfully, many useful publications and initiatives are attempting to address this (see the useful resource section at the end of Mannix, 2017)

High levels of unmanaged distress

In acute distress when the sympathetic nervous system is in overdrive, the fight/flight mechanisms are triggered. This resulting changes in brain chemistry and physiology make clear judgement more difficult and ‘toxic thinking’ more likely. Examples of these ‘cognitive distortions’ include ‘black and white’ thinking, over-generalisation and catastrophising, that can drive a person towards giving up (false hopelessness), or a grasping at straws (false hope). The underlying distress could result from very practical concerns about finances, work or domestic commitments, or be due to physical disturbances – pain, severe symptoms from cancer or cancer treatments, sleep disturbance, malnutrition etc. The distress might also have more psycho-emotional, existential or spiritual dimensions. Holistic assessment and support, education about selfmanagement and good symptom control will all be necessary before people can get to a place where they are able to start thinking realistically about the future with a more balanced perspective. People need to be helped to feel ‘safe enough’ before they have any chance of finding realistic hope.

Living with and without realistic hope – Jennie’s perspective

It is fairly obvious when someone else has unrealistic hopes, particularly when these are related to their state of health (eg hoping to run a marathon again when already confined to a wheelchair as a result of a progressive illness) but it may be harder to spot when we ourselves have unrealistic hopes or expectations. Broader, generic hopes may or may not be realistic, eg finding a cure for cancer, depending on the degree of specificity – finding a cure in time to cure me, or finding a cure eventually.

The opposite side of unrealistic hope is also potentially damaging. Many people describe depression as feeling hopeless. Focusing purely on what can be a very grim prognosis/reality can be very depressing indeed. As human © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

REALISTIC HOPE

Realistic hope – and its role in keeping us resilient in times of crisis

beings, particularly in the first world, it is very difficult for us not to live in the future tense – our life runs around plans for next week, dental appointments six months off, booking your holiday for next year. Losing our ability to live in the future can be both disorientating and distressing, and is exacerbated where that future seems completely preoccupied with treatment, declining health and, ultimately death. Having no hope can lead, quite literally, to giving up on life.

As well as freeing me from needing a specific outcome so that I can be ‘OK’ with the possibility of dying, realistic hopefulness enables me to plan in a practical way, even though I still retain the hope that, with an integrative approach to my treatment, my death is not an imminent inevitability. In my view, this is an important part of being at peace with myself and my life. It includes putting in place an Advanced Care Plan, writing down wishes for my funeral arrangements and making sure I spend quality time with certain people. From a place of realistic hopefulness, I feel able to experience the full range of emotions, to feel whole and exquisitely alive because there is no barrier of my own making between me and the world. Unrealistic hope and/or hopelessness, by definition, would close parts of me to myself, others and the beauty of the moment, and would allow me to get lost in worlds that exist only in my mind, places that others around me cannot go to, and that would separate us at a time when connection is most important.

The physical impact of realistic hope

Many studies have shown that hopefulness can have a direct beneficial impact on physical health and biological health markers (such as immune system response, cortisol profiles, and cardiovascular function) as well as the more obvious impact on mental health and likelihood of making positive lifestyle changes (Conversano, 2010; Dockray, 2010). Studies in people with cancer report that those who have an optimistic outlook have a better quality of life and improved mental wellbeing compared to pessimists. However, the results of studies looking at whether this is linked to improvements in survival are mixed (Schulz, 1996; Allison, 2003; Schofield, 2004) so, once lifestyle factors are taken into account there is as yet no clear large-scale evidence in cancer populations as a whole, to link any particular mental attitude or personality type with improved survival. However intriguing research into the small but well-documented number of people who experience a spontaneous or radical remission from cancer suggests that ‘taking control’, which depends on a level of hopefulness, may be one of the key factors responsible for their unexpected wellbeing. More careful research is needed to help unravel the complex and individual nature of realistic hope, and the physical effects it may have, including whether it can help some people with cancer live longer as well as better.

●

Volume 16 Issue 2 Summer 2019

Summary Developing and nurturing realistic hopefulness in our clients is core to the work of Penny Brohn UK and a key foundation for enabling them to live well with cancer. Understanding what Realistic Hopefulness looks like from a client perspective, the factors that encourage or prevent it, the difference it can make both psychologically and physically, and the role conventional and complementary medicine practitioners may play in this is, we believe, vital to the success of an integrative approach to cancer patient care. I see hope as the very heart of healing. For those who have hope, it may help some to live longer, and it will help all to live better.’ Jerome Groopman, 2003

www.pennybrohn.org.uk

References

Allison PJ (2003) Dispositional optimism predicts survival status 1 year after diagnosis in head and neck cancer patients. J Clin Oncol 21, 543–548. Conversano C (2010). Optimism and its impact on mental and physical well-being. Clinical practice and epidemiology in mental health 6, 25–29. D’Acquisto F (2017) Affective immunology: where emotions and the immune response converge. Dialogues Clin Neurosci. 19 (1) 9–19. Dockray S (2010) Positive affect and psychobiological processes. Neurosci Biobehav Rev. 35 (1): 9–75. Dweck C (2017) Mindset (6th ed). London: Robinson. Gawande A (2015) Being Mortal. London: Profile Books. Groopman J (2003) The anatomy of hope. New York, NY: Random House Books. Hagerty R et al (2005) Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis. Journal of Clinical Oncology 23 (6) 1278–1288. Johnstone C (2019) Resilience. London: Little Brown. Mannix K (2017) With the end in mind. Glasgow: William Collins. Marchant J (2016) Cure: a journey into the science of mind over body. Edinburgh: Canongate Books. Pilkington P (2016) The golden thread: a quiet revolution in cancer care. London: Jessica Kingsley. Sabbage S (2017) The cancer whisperer. London: Coronet. Schofield P(2004) Optimism and survival in lung carcinoma patients. Cancer 100 (6) 1276–82. Schulz R (1996) Pessimism, age, and cancer mortality. Psychol Aging. 11, 304–309. Shahidi J (2010) Not telling the truth: circumstances leading to concealment of diagnosis and prognosis from cancer patients. European Journal of Cancer Care 19, 589–593. Turner KA (2014). Spontaneous/radical remission of cancer: Transpersonal results from a grounded theory study. International Journal of Transpersonal Studies 33 (1) 42–56. You Me Big C Podcast (2018–2019) Available at: www.bbc.co.uk/ programmes/p0608649/episodes/downloads (accessed 2 June 2019).

Activating hope in times of unravelling ACT I V E H O PE

Chris Johnstone

Resilience specialist, CollegeOfWellbeing.com

I trained as a GP, then for many years worked as part of a specialist mental health team treating people with alcohol dependence. These days I teach online courses about wellbeing, active hope and resilience. My books include Active Hope (co-authored with Joanna Macy and translated into several languages), and Seven Ways to Build Resilience.

David Peters interviews Chris Johnstone about the role of hope when things fall apart, either in our lives or in the world.

DP – Hope is a central theme for this edition and also of Active Hope, the book you co-authored with Joanna Macy. How do you see hope and why is it important? Something I’m deeply interested in is what help us more fully engage in life, with its ups and downs, and challenges, in ways that contribute to wellbeing not just of ourselves, but also of the world around us. Hope is part of the story here. But it is not straightfoward – because while some aspects of hope can be enlivening and draw us more into life, the opposite is possible too. For example, if we think we need to have hope before we can follow a purpose, what happens when we lose hope? Do we give up on our purpose too? At a time when so many people struggle to feel hopeful about the future, whether their own, or that of the world around them, we need a different approach.

DP – so what is active hope and how is it helpful? The word hope has different meanings. In the question ‘are you hopeful?', you’re asking someone about their assessment of how likely something is. Is it going to work out? 30

or not? Do you have your hopes up or not? Compare that with the question ‘what do you hope for?' Here you’re inviting them to tell you about their desires and preferences. Active hope is more to do with this second meaning and it involves three key steps. First you start from where you are, being fully present to the reality of your starting point. Then, you identify what you hope for from there – what’s the direction you’d like things to move in? And third, you take steps that way, you’re active in the process of making your hoped-for future more likely.

DP – how has this perspective been useful in your work as a medical doctor?

For much of my medical career, I worked with people with severe alcohol dependence. When someone stops drinking, and begins recovery, there’s all kinds of hopes generated about how things might go – both for the client and also for any helping professionals involved. When a relapse happens, those hopes get dashed and that can be hugely painful. I often saw clients who, after repeated relapses, felt such a sense of hopelessness that they’d say, ‘What’s the point? I keep failing. It’s not going to work, I can’t do it'. One told me he’d given up

giving up, because it was too painful to keep on trying when each time he fell flat on his face. Yet working in groups, other clients would say things like, ‘I was like that a few months ago, and then something changed. I hated being so disappointed with myself, I hated how I felt, being so out of control, I reached a point where I’d do anything to get well. I learned I just had to take it a bit at a time, sometimes even five minutes or an hour at a time. Doing that, I got through a whole day, then another one. Building on that, things gradually changed.’ There’s something here about having a light at the end of the tunnel, then losing that light, then finding a way. How do we keep going even where we’re not sure where the light is? Active hope starts from the recognition that whatever you face, there’s different ways it can go. Even if there’s no light at the end of the tunnel, there will be different versions of being in a lightless tunnel, some of these better than others. To represent this, I use an image I call the spider diagram. If the body of the spider represents the present moment, then each leg is a different way the future can go. What’s the best way things can go from here? What’s the worst? And what’s most likely? These questions point us to different legs. Active hope

●

Volume 16 Issue 2 Summer 2019

ACTIVE HOPE

Activating hope in times of unravelling

is about taking steps to make the best more likely, and the worst less so. From whatever starting point you have, you begin from there, and identify your preferred legs of the spider – your hopes about how things will go. Then you head that way.

be learning more about triggers and preventative measures. Research shows, for example, that practising self-hypnosis can reduce the severity and frequency of attacks. A big challenge with self-help strategies is that you can take the steps, but not always see an immediate benefit. You can do self-hypnosis and aim to avoid triggers, yet still have an asthma attack. It is easy to get disillusioned if our actions don’t lead to the results we hope for.

DP – How can you trust that what you do is worth the effort when it doesn’t seem to work as you’d hoped?

The spider diagram

For someone giving up drinking, their hopes about where recovery might lead are like the lights at the end of the tunnel. But when things are so bleak that no lights are visible, they can still recognise some legs of the spider as more hoped for than others. When really struggling, just getting through five minutes without drinking is a better leg of the spider. Active hope is about what you do to make that more likely. It might be phoning for support. It might be pouring a bottle you have down the sink, rather than drink it, because you’re not sure you’d be able to resist it if you still had it around. What we’re looking at here is hope as a direction rather than a place. The light at the end of a tunnel is a place, and hopefulness is about how much we believe we might get there. I was working with people who didn’t feel hopeful at all, where the idea of being well and happy in a stable recovery seemed impossibly far away. If they thought about hope in terms of ‘will I get there?' it was depressing and left them wondering what the point was. But if they thought about hope as a direction they could move in from any starting point, and active hope as the process of moving that way, it became something they could succeed in every day. It became doable.

DP – how does this active hope process apply in other areas of medicine?

With something like severe asthma, you can feel quite out of control. You can hope like anything that you won’t get a bad attack. But there’s a difference between passive hope and active hope. Passive hope is hoping for the best, but not playing a role to help that happen. Active hope involves looking at what you can do to make your hopes more likely. Even when a condition feels out of our control, there will still be ways you can influence what happens. The key thing is to identify choice-points where going one way rather than another has an impact, even if just a small one, on what happens. With asthma, it might © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

I think what’s needed here is a different way of thinking about cause and effect. A piece of advice often found in self-help books is ‘focus on what’s in your control’. But I find influence a more helpful concept than control. The challenge is that recovery in long-term health conditions – whether asthma, addiction, depression or heart disease – is a complex process involving many different factors. It isn’t as simple as ‘A causes B’ in that if I do A, that will control my symptoms and cause my recovery in a direct, easily-seen way. Often the impact of a self-help practice is subtle; each step you take adds to a context that can help shift a larger balance. For example, in the diagram below, which square causes the circle?

It isn’t a single square that does it, but rather the circle emerges out of a number of squares acting together as a whole. Even three or four squares aren’t enough – you need to reach a critical threshold or tipping point where enough of them acting together creates the shift from some squares to a circle of squares. What we’re looking at here is systems thinking, where larger patterns or processes emerge from smaller elements acting together as a whole. This leads to a different way of thinking about cause and effect. Rather than looking for the cause, you look at contributing causes that act together, leading to the emergence of a more visible effect. Each square, when arranged a particular way, adds to a context that makes the circle more likely. This way of understanding causation is in the form of ‘A (an action) adds to a context that makes B (a consequence) more likely’. The regular practice of self-hypnosis adds to a 31

ACTIVE HOPE

Activating hope in times of unravelling

context that makes longer periods without asthma attacks more likely. Going to a recovery support group isn’t enough by itself to stop someone drinking, but it can add to a context that makes recovery more likely. Like with the squares, we often need several things acting together to tip the balance towards recovery.

DP – Taking a jump from the personal to a team or organisational level, how might this way of thinking about cause and effect help health professionals who are experiencing despair about their working conditions?

Thirty years ago, I was in despair as a junior doctor working more than 110 hours some weeks – in a busy job where I was up for much of the night after working the previous day, and then expected to work during the next day too. It was ridiculous. When I asked my colleagues what we could do to improve conditions, they replied ‘we don’t have the power here, there’s nothing we can do'. I know that’s how many people working in the public sector feel right now, with years of cutbacks stretching services too far. I’d been interested for many years in the process of how change happens, not just at a personal level, but also in cultures, organisations and society. The perspective of ‘A adds to a context that makes B more likely’ got me interested in how I could play my part in supporting a context that made changes we wanted more likely. So back then I joined a small group of doctors campaigning on this issue. We slept overnight on the pavement outside The Royal London Hospital, attracting press coverage that raised the issue in the political agenda. Eventually I took my health authority to court, challenging the legal basis of my contract. After six years going through the courts, I eventually won the case. It had a huge impact. When I started my court case, my actions were seen as courageous but foolhardy. I was dismissed as an unrealistic dreamer, as my case was widely seen as unwinnable. But my experience taught me to have a more open mind about what is realistic or possible. The view that something can’t happen is an assessment based on what we know at the time. It isn’t necessarily a statement of fact. In systems terms, it’s interesting to consider what features of a context we can add to. Great questions here are ‘what happens through us’ and ‘what are we part of?'. The collective response happening through many of my colleagues about the doctors’ hours issue was one of acquiescence. That added to a context that made it more likely the problem would continue. What kept me going was a determination to express a different response. I wanted to use my influence the best way I could. Even though I wasn’t sure that my actions, by themselves, would add up to much, when I thought ‘what are my actions part of?’ I felt part of a long tradition of people who’ve stood up for change, who’ve initially been dismissed, but who hung on in there in a way that helped

shifts happen. I felt part of a powerful story that involved many other people, not just me. Like the squares being part of the circle, I was showing up in an attempt to help a different pattern emerge. So the question I explore in addressing working conditions or any other issue, is ‘what would a story of change look like here, and how can I play a part in that?’

DP – How can this perspective on hope be useful when facing issues like climate change? The starting point for me is the spider diagram. Whatever we face, there are different ways it can go. What’s the best that can happen? What’s the worst? And what’s most likely? Then how can we make the best more likely, and the worst less so. The worst that can happen is really awful. What’s most likely, if we carry on the way we’re going, is very scary too. Yet even from a lower leg of the spider, it can still go different ways. In my resilience training work, I draw this as a double spider – where we look at the range of possibilities when things have already taken a turn for the worse. My work is about looking at what supports us to rise to the occasion when facing difficult times, and how we can play our part in making a better version of what comes next more likely.

Double spider diagram

When we’re in a dip, whether in our personal lives, our workplace situation, or collectively with the world, we can’t know whether our efforts will bring about a turning towards the better future we hope for. Joanna Macy, my co-author with Active Hope, uses the phrase ‘radical uncertainty’ to describe a state of openness to possibility, where it’s our not knowing whether things will get better or worse that provokes us to show up and use our choices to steer the flow of how things develop. Will we get there? Who knows? But if we see hope as a direction that really matters to us, that can activate us to take steps that way.

●

Volume 16 Issue 2 Summer 2019

Can life in a former chocolate factory be infused with faith, hope and love?

I NT E R -FAI T H C AR E

Lisa Loveridge Pastoral Care Co-ordinator, The Chocolate Quarter

What do faith, hope and love mean in the context of the spiritual wellbeing of older people? How can we work together to enhance quality of life? These are some of the questions considered here, along with how they pan out for residents of one retirement apartment complex. Who doesn’t long for the comfort of faith, the excitement of hope and the warmth of love? To have all of these, and in later life, may seem like an impossible dream, but read on….

●

A common thread through my time social working, spending 11 years as a full-time mum, dealing with major health issues, being an unpaid carer, and now in pastoral care, is being on the edge. Sometimes it’s a cutting edge, like providing innovative services or working in a multi-faith role, other times it’s much more marginal. The main thing is that I can bring my whole self to work now and have adequate support to thrive and to make the edgy position sustainable.

Fry, Cadbury and St Monica I work in a chocolate factory, and no, it’s not a chocolate paradise! In fact, it doesn’t make chocolate at all any more. It’s no longer even a factory. It has a dance studio, a multi-faith room, a spa, a cinema, an art and pottery studio, a wood-fired pizza oven and (get this!) a nail bar and treatment room which, among other things, provides male waxing and facials! This transformation received the 2019 National Pinder Healthcare Design Award for best regeneration project. I want to tell you about this building because it is central to my story. The building is in the small town of Keynsham between Bath and Bristol in south west England. It was built by the Quaker Fry family in 1925 and later taken over by Cadbury – another Quaker family. Over the years it produced Fry’s Chocolate Cream, the Double Decker, Dairy Milk, Chocolate Buttons, Cream Eggs, Mini Eggs, Cadbury’s Fudge, Chomp and Crunchie. But not any more. Cadbury was bought by Kraft Foods in January 2010 and shortly afterwards chocolate-

Volume 16 Issue 2 Summer 2019

making was moved to Poland and the Keynsham factory was closed with the loss of 700 jobs. Six years passed before the derelict shell of the factory buildings was bought by the St Monica Trust. It’s important for this story to give you some background to the trust. Around 100 years ago, the trust was created and named after Mary Monica Wills, a deeply religious High Anglican who had married into the wealthy Wills tobacco family in Bristol. Her passion as a young woman was to provide a ‘purpose-built haven for the care of chronic and incurable sufferers’. She achieved this with the purchase in 1919 of a 27-acre site a few miles from Keynsham in Cote Lane, Westbury-on-Trym, North Bristol (www.stmonicatrust.org.uk/our-expertise/history). The modern St Monica Trust, still based in Cote Lane, continued with the original vision by converting the Keynsham Chocolate Factory for various purposes including a care home for the very frail, and 136 retirement apartments (housed in the two nearest blocks in the photograph). They converted the third block into offices and a GP surgery 33

INTER-FAITH CARE

Can life in a former chocolate factory be infused with faith, hope and love?

which now provides them with rental income. The wider site, mostly owned by the developers, Taylor Wimpey, has become a large housing estate with designs that complement the old factory, and with sport and recreational facilities for local people, thus honoring the original vision of the factory’s Quaker founders, Egbert Cadbury and Cecil Fry.

Top: the original Fry’s chocolate factory; above: after conversion

The job

My role is pastoral care co-ordinator. The role is a legacy of the Anglican foundation of the charity and is unusual, as spiritual care in retirement villages and care homes is often patchy and usually exclusively Christian. This is despite being a central part of care of the dying in a multifaith society. These days, the St Monica Trust is mostly secular. My job is to support any residents, families, staff, trustees and volunteers who want to work with me. This can be anything from presiding at funerals and memorial celebrations, sitting or praying with people who are dying, to conducting harvest celebrations for the whole community, organising tea and coffee for Baha’i celebrations and listening to people with mental health problems or the carers of people with dementia. The average age of residents in the apartments is mid-80s. All apartment residents own their homes while those in the care home are a mixture of self-funding and NHS or social services supported residents. The initial construction of this building in the inter-war period required faith in a future, in humanity and in our continued love of chocolate! Converting it required faith 34

in taking out a multi-million pound loan to provide a new model of service for older people. This is despite the brokenness of our social care system and the likelihood that future generations of elders may be unable to afford to live in such a place. It was a courageous thing to do. A resident recently asked what the qualifications are for a pastoral care co-ordinator in this place. This is a very good question and I’ll return to it. From my employer’s point of view, what was important in my application was my background in both Christianity and social work, not being ‘churchy’, my commitment to my own growth and learning and my understanding of and commitment to values such as community integration, finding meaning and purpose in life and of empowerment. I am a spiritual seeker and was a Catholic Christian for 40 years but always interested in other religions. Finally, I made myself spiritually homeless about 5 years ago, which feels a more comfortable place to be. I struggle with institutions but get strength in community, so I have tended to find or have created small groups mixing reflection on the Bible with meditation. I am also committed in my personal life to social action on issues of peace, justice and the environment and gain much strength from being around people who also work for these goals. Compared to being a social worker, being a pastoral care co-ordinator is liberating. For example I am able to be myself, share my experience if it’s relevant or might be helpful and am able to hug people if they would like a hug. There are no forms to fill in and I’m able to listen without having an imposed agenda. This is great when people want to say what a bad time they’re having. I can be creative in organising and presiding at both Christian and multi-faith events, making beautiful orders of service and in creating and maintaining a calm and peaceful environment in the multi-faith room. I often have to pinch myself that I am paid to chat with people and that I also get paid to go to church and to meditate.

Faith and no faith My role encompasses faith, hope and love in their broadest senses. I see faith as our unique spiritual path, which sometimes follows a particular religion and sometimes doesn’t. Either way, it is about what makes us tick as people and links closely to wellbeing. Our relationship with nature, our experience of meditation and having close relationships could be important for both. It requires a deep respect for everyone’s beliefs and inclusion of a representative range of beliefs in our ceremonies and community celebrations. It may not be religious faith that people hold but rather a belief that we’re on a spiritual journey. The Christian, Quaker, Pagan, Muslim and Baha’i faiths currently count residents among their numbers. This provides a diverse range of possible experiences and opportunities for growth for our residents. Many residents have tried Quaker Meeting and Baha’i worship through curiosity and appreciate that they can do this. © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

INTER-FAITH CARE

Can life in a former chocolate factory be infused with faith, hope and love?

Things do not always turn out as expected. While I put on silent meditation for a Pagan resident and those who have no religious faith, the most regular attendees are Christian. A colleague runs a creative reflection group where people can bring a poem or picture that means something to them and also do a craft activity. This is a wonderful group for helping to create a sense of community, where people feel valued, enabling creativity. The same colleague and I also offer guided meditations. We support residents who wish to provide worship opportunities to others. For example, a 91-year-old resident has set up a small group to provide monthly Christian worship for people with dementia in the care home and another resident leads Christian worship for LGBT+ people in our multi-faith room. We benefit from the support and company of many local residents in leading groups and attending events, which helps us not to be an insular community. In our wider culture, we tend to be uncomfortable talking about faith. I found my social work training and practice sometimes hostile in this regard. Strangely, I think it would have been easier if I were from a minority religion, but being Christian, and worse, Catholic, was seen as a problem. To understand the importance of my faith to me, you would need to know that, as a child, God was my imaginary friend. As a teenager, I had a very short experience of profound inner peace in the chapel St Francis near Assisi. On school retreat age 15, I came to a deeper experience of God like that described by TS Eliot in The Journey of the Magi, when the Magi stated that their conversion was ‘hard and bitter agony for us’. At that point, I began to get involved in the music ministry both in my church and at school. Then sometime in my late teens, I decided that God couldn’t exist, which made me desolate. However I found that I continued to pray and realised that prayer is not something that I choose to do, it just happens. I figured that something beyond my conscious mind must be making it happen and I returned to faith. In all the tragedies and joys of my life, I have felt God to be near to me, even when too upset to pray. So what about faith in the lives of our residents? Many are comfortable wherever they are on their religious journey, whether that is using a particular Anglican prayer book or being Catholic or Baha’i. Others appreciate freedom and space to grow and being supported in this. For some, their spiritual path is expressed through more than one Christian tradition, for example we have four Anglican residents who attend Catholic mass. There are those residents who enjoy discussing and worshipping with members of other Christian denominations and those who prefer to remain within one tradition. Many residents do not wish to discuss their journey, which is fine with me, as I’m busy enough! The main thing is that there is a place and a person with whom one can express things if desired. There is a popular idea that people come to faith in older age. So far, this is not my experience and an article

●

Volume 16 Issue 2 Summer 2019

in The Guardian (Summerskill, 2000) cites research comprising interviews with 340 older people, showing that they follow the national trend of becoming less religious. My observation is that people without a faith struggle most to find meaning and purpose in their life. It is also very helpful to have a belief that there is something to learn in all our experiences in life, even in our suffering. For many of our residents, faith in themselves is important at a time when increasing frailty is sapping their confidence. It might be faith in life, as some people struggle with the ageing process. Or it could be faith in a future in which a person requires assistance in a culture which values independence. Which brings me to hope.

Hope The average age of our residents is 86 years. Many are widowed and have lost a caring role. Their children (if they have any) have also grown up and they have varying degrees of contact with them. Others of our residents are still caring for a partner with dementia or terminal illness and of course many our residents have many of their own health issues. Depression is a big one. Nationally it affects around 22% of men and 28% of women aged 65 years and over (Health and Social Care Information Centre, 2007). I am very aware of the need for hope and try to address it by encouraging people to find meaning and purpose. This might be through community celebrations, for example for Founder’s Day or Harvest Festival or through donating to Bristol Refugee Rights or other charities (opportunities are provided throughout the year). It may be through helping people to engage in events in the community, which requires some signposting, as 50% of the residents are not local, often having moved to be near to their children. I support people to volunteer, such as the two residents I already mentioned who lead worship. Another resident regularly leads silent meditation when I am away. It is tempting for people to move in and to think that they’re just biding time until death, so helping people to see that they can still contribute is a challenge that we face as a team and try to address by providing options at many levels. Fred (not his real name) is in his mid 80s. He’s nominally Christian, mostly agnostic and goes to Baha’i worship because he likes the music. He is a widower and hates the ageing process. Though he is able to get to the shops and regularly sees family members, he is depressed. Helping him to find hope is a challenge. I’ve referred him for a volunteer befriender and a colleague has suggested medication. We have suggested many voluntary things that he could do or groups he could attend in town but he’s not interested. He’s happy to read at community celebrations. His negativity has alienated some other residents and it is sometimes an act of love to listen to him. Given the prevalence of hopelessness, the diagram below resonates strongly with me. You might assume that poverty is not an issue for our residents but after paying

INTER-FAITH CARE

Can life in a former chocolate factory be infused with faith, hope and love?

their annual maintenance fees, some have little to live on. Many are concerned to save enough to pay for care when they come to need it. For those with a partner needing residential care, there are often issues about how this will be paid for. I’m not aware of blatant examples of age discrimination, however I think that the impact of our ageist society is more psychological. We value paid work, so people sometimes feel useless when they are not working. People can easily see themselves as a burden on others, which perhaps would not happen in some other cultures. Most of us are afraid of needing support, particularly when we know that those services are often under-funded and not always of the quality that they should be. It requires a strong belief in the dignity of people to withstand all of this.

Love As a social worker, I was uncomfortable with using the word ‘love’ at work. It smacked of unprofessionalism and of being too attached. But inevitably I became fond of people. When working with people with learning difficulties and labelled as having ‘challenging behaviour’, the most transformative services I commissioned in terms of reducing violence and increasing happiness were those where the quality of the relationships between care staff and residents might be described as unconditional love. These days I am much more open about love at work. Authenticity in relationships is very important to me. This does not negate the need for boundaries and I draw the line at being Facebook friends with residents and rarely give out my personal number. Here is another story: I was asked by the wife of a man who was close to the end of his life to go and pray with him. The florist had just delivered some flowers for the multi-faith room and I took these, along with a candle and a cross. Despite being in the very late stages of dementia, the man was delighted to both see and smell the flowers. I left them with him and he continued to enjoy them, looking at them and asking for them to be brought nearer to him over the last few days of his life. I am very fortunate that my employers pay for me to go on retreat for four days a year. I pay for my own external supervision with a Christian psychotherapist every month and for monthly spiritual accompaniment, with a counsellor providing soul integration therapy. She integrates aromatherapy, reiki and crystal healing into her work. I try to meditate every morning, but I am not always successful. 36

In this role, I walk alongside people, without wielding power. I share more of myself than I have ever done in my previous roles and people share the intimacies of their lives with me. I am not a counsellor but I do a lot of listening. Here, love is a by-product of the creation of community. Much of my role is helping residents to build relationships with each other and with visitors from outside. It is amazing to watch how people do this and support one another over time. For the future I have many plans for expanding my skills and enrolling others so that more residents receive the sort of support that will help them to thrive.

Coda In the old days at Fry’s, I understand the staff would pray every morning. Nowadays it is lovely that Quaker meetings have returned to Keynsham and that silence can still be part of our lives. The concern of the Fry and Cadbury families for the physical and spiritual wellbeing of their employees aligns with the values of the St Monica Trust and this has been expressed, for instance in the facilities provided such as the new gym and pool and in the decision to create my own role. When all of this is combined with the founding St Monica commitment to those who are frail and in need, the Chocolate Quarter embodies not only the St Monica legacy of Mary Monica Wills, but also honours the Quaker heritage of the chocolate factory and its ethos. It is a remarkable project.

References

Health and Social Care Information Centre (2007). Health survey for England, 2005: health of older people. [online]. Available at: www.hscic.gov.uk/pubs/hse05olderpeople (accessed 14 September 2015). Summerskill B (2000) Elderly lose faith in religion. The Guardian. September 3. Available at: www.theguardian.com/uk/2000/sep/03/ religion.world1 (accessed 16 May 2019).

●

Volume 16 Issue 2 Summer 2019

There is no ‘I’ without ‘we’ in palliative care

H O S PI CE C AR E

Marina Malthouse Retired palliative care physician

Faith, hope and love can be associated with Dame Cicely Saunders who founded the modern hospice movement and medical specialty of palliative care. She has inspired givers and receivers of palliative care for decades to consciously consider humanity when people are dying. During my 20 years as a palliative care doctor, I learned about the lessons of life from patients, their families, and the people I worked with. In this article, I reflect on hospices as an environment, an organisation, and practices taking place within.

●

After 33 years of practising medicine, I stopped working in order to pick up other interests in my life. Although I remain involved academically with the MSc in Palliative Medicine at Cardiff University as a marker and supervisor and with the New School of Psychotherapy and Counselling in London, I now volunteer in Greece for several months a year working with refugees, kitchen gardening with permaculture and cooking in a community. I have discovered how the skills of a doctor are eminently transferable to the outer world.

Faith, hope and love lie at the heart of palliative care. Dame Cicely Saunders founded this medical specialty through the modern hospice movement and although not present in the following lines, faith, hope and love infuse her often-quoted words: You matter because you are. You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die. Not surprisingly the inescapable meaning emanating from these words have inspired both givers and receivers of palliative care for decades, because they insist that the essential elements of humanity remain consciously in place during the last chapter of people’s lives. Her endeavour was to seek a middle way that combined sound medicine with compassionate care (Clark, 2015). I owe 20 years of gratitude to this incredible woman, having entered the hospice environment as a novice in 1995 and exited as a passionate palliative care physician in 2015. My place of work was Dorothy House Hospice near Bath. During every single one of those 20 years, I was learning from my relationships with patients, their families, and the people I worked with. They were my teachers and they had me sit through

Volume 16 Issue 2 Summer 2019

the classes of life. These encounters taught me – to name but a few things – about engaging with vulnerability, humility, the language of suffering, silence, humour despite adversity, intense sadness, eradicating assumptions, the individual and the collective, and curiosity. These lessons were not about gaining factual knowledge, but rather about acquiring a different kind of knowledge, a knowing that evolved out of engaging with suffering. In this line of work, suffering in the other needed to be met head-on. It infiltrated my own Other and as a consequence, shaped my mind, body and soul and over time, they adjusted my way of being. Many of these lessons were hard, and during my early years at the hospice, I became acutely aware of a need to broaden out beyond what I had learnt as a medical student and since qualifying as a doctor 13 years earlier. I realised that to attend to the emotional and spiritual pain of people who were dying, I would have to study about the borderlands between medicine and humanity and to become a more therapeutic practitioner, I would need to find ways to reflect on my way of being human. Working in an environment that had honed its own culture of care was not going to be enough if I wanted to do my job well. Faith, hope and a passion for my work were essential during the

HOSPICE CARE

There is no ‘I’ without ‘we’ in palliative care

years spent studying for the Diploma in Palliative Medicine, an MA in Medical Humanities at Swansea University, and an Education Doctorate in Narrative Inquiry at Bristol University.

Dame Cicely Saunders, founder of the modern hospice movement

The hospice environment

Inspired by Cicely Saunders, hospices drew on her faith, hope and love and although ‘motivated by her Christian beliefs, Saunders harnessed the love of people of other faiths – and none – to a neglected cause…she opened up a practical, personal, political and philosophical space for engaging with the care of the dying, and with death itself ’ (Clark, 2015). The design of physical space inside and outside a hospice is consciously considered, but so too is psychologically safe space, in the ways that staff and volunteers attend to patients and their families. Hospices know it’s essential to support their staff in order to create an environment akin to a sanctuary, where people who are suffering in ways that they have never known can be ‘taken in’. At Dorothy House Hospice, this attitude extends out into the community where much of their work also takes place. The hospice defines itself by its ethos of hands-on care that attends to detail and practises a willingness to never give up however difficult the challenge. Hospices also make a point of not only supporting but also educating other professionals involved in end of life care.

Hospice as an organisation Organisational compassion is essential for a hospice. In their book Awakening Compassion at Work, Worline and Dutton define compassion as a felt and enacted desire to alleviate suffering, and they identify an organisation’s responsibility for enabling their staff to achieve this. Although healthcare workers have to be responsible for their own self-care both inside and outside of work, the demanding context of their work means hospices have a duty to work very hard at organisational compassion or at least they should (though no doubt this happens more in some hospices than others). 38

One could argue that in medicine, kindness is a basic necessity, yet the all-embracing kindness I experienced when I first entered into hospice care was something I hadn’t known in my previous places of work. Yet when it’s made explicit, a culture of kindness improves staff retention, while also helping ensure that patients receive the best care possible, and that staff work well as a team. Staff members who are unhappy at work detract from the quality of care, and may not show respect for one another or allow unhurried time with patients and their families that’s needed if they are to talk openly with patients and their families about death and dying. These are essential, and must be achievable aims in hospices, because people come there searching for the kind of help described by Ballatt and Campling in their 2011 book: Intelligent kindness surely demands that healthcare staff are authentic and help patients towards the truth, even if very gently in some instances. By encouraging people to face the inevitable reality of death and think through and discuss various end-of-life scenarios, the unhelpful taboo on death may begin to lessen (p121). I have no doubt that, because rooted in each of us was a desire to be authentic with the patients and their families we attended to, the people I worked with shared the common goal of compassionate care. This sense of kinship among us that arose from knowing that any one of our patients could be us, or someone close to us; from recognising and acknowledging that we were all human beings whose lives too would one day end in death. Within our organisation, safe space had to be created for this vulnerability to be expressed, and for trusting relationships to be nurtured. Achieving such intimacy is no easy task, neither in a staff group where strangers are meeting strangers, nor when patients and their families encounter unfamiliar healthcare staff within the hospice or in their community settings.

The practice within a hospice During my last few years at the hospice, I started a writing group with a few nurses, another doctor, and our art therapist. Some of the group have left but we have newcomers, and so we continue to write. When we first started the group, as a way of bonding around our insecurities about writing we wrote of our experiences at work. I have included below three of my own stories that I’ve adapted for this article in the hope that they offer readers a window into the day-to-day life of a palliative care doctor working in and from a hospice. The stories are woven from an amalgamation of my experiences but the individual details are circumstantial and therefore anonymised. The first of these is about a patient and doctor meeting as strangers and how by engaging attentively, a different story of suffering emerges.

●

Volume 16 Issue 2 Summer 2019

HOSPICE CARE

There is no ‘I’ without ‘we’ in palliative care

I parked, picked up the notes from the passenger seat and gave myself a few minutes to read through the patient’s details in the solitude of my car. A GP had asked for help with symptom control of a patient’s pain. As I read the letters and scans, I pieced together a medical history of a 40-year-old man with an aggressive osteosarcoma that had spread to his lungs and spine and who had recently been discharged from hospital. He was married with three children. Jamie welcomed me into his room apologetically. As he spoke, his weakened upper limbs clumsily and awkwardly repositioned his laptop more centrally onto his now useless legs. He made out to reach for a pile of papers that lay on the bedside table but unable to stretch out his arms he had to move his whole torso forwards and sideways. I restrained myself from reaching over to save him this effort. Instead, I watched him painfully struggle to achieve this simple feat so that he himself might hand me his clinic letters from the specialists involved in his care. The most recent was from the neurosurgeon. Jamie read it out to me word by word which must have been difficult seeing as the surgeon declared that he was unable to offer this young man any further surgery.

Jamie’s previous career in project management was clearly evident as he stated his plans for yet more scans and consultations with their necessary transport arrangements. But he looked weary. Despite his cheery demeanour, his sunken eyes expressed a different mood that more closely reflected the unhappy scene that lay in front of me.

‘Seems you’ve had quite a time of it lately’, I said, acutely aware of the swell of empathy that was stirring within me. I wanted to cry but knew this wasn’t the time for pity or for him to bear my sadness. We stayed still, our silence filling a pool of unspoken words of sorrow. Jamie looked straight into my eyes. ‘I can’t say it’s been easy’, he said, but what else can I do if I want to keep on living? I returned his gaze and he took my silence as a cue to continue.

‘To be honest, I’m an emotional wreck. Tired of all this, tired of thinking ahead, tired of being brave and strong – that’s all anyone ever says of me, my wife, my family, my friends, the carers. I can’t tell them how I really feel. My wife works all day and then gets her painting clothes on when she gets back as we’ve been trying to do this place up. I’d rather she sat with me here on my bed. Hold my hand maybe. I don’t get to choose how to spend my day or even what clothes to wear.’ It felt as if the two of us were inside an impenetrable bubble. Just him and me. His soulful descriptions of his present situation were richly spirited and articulated in a way that sucked me in to his world of imminent demise.

‘My wife looks tired. I think I’m an irritation for her judging from the expression on her face when I ask for yet another favour. I feel so useless. What will I be to her when I’m gone? I feel like I’m in pencil’, he said more softly. ‘Pencil?’ I asked. ‘Yes, pencil. I think I was in ink for her before but now I feel as if I’m in pencil, soon to be erased.’

I had completely lost track of time but as we rounded off our time together, I realised that Jamie hadn’t once mentioned the word pain. © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

This next story aims to depict how putting faith in trust enables vulnerability to shift from a position of weakness to one of safety and strength.

When we first met, you told me you weren’t a strong person and that you were bipolar. You said you felt uncomfortable in the hospice. You told me about your life and as we talked, I could see an area above your upper lip twitching and your petite body trembling. None of this was surprising as our meetings were about your beloved partner Tim who was dying in the hospice. The first time we met was in his room. He lay in his bed and we sat either side of him, each holding a hand that he had offered us, barely conscious but seeking touch. The next day, I greeted you, again in his room where you’d slept the night, your bed alongside his. While we talked his long, bony arm reached out through the bed rails to touch you. You leaned over the rail to embrace him but the structure of his high-tech airbed meant that your body couldn’t get close enough to his. So I suggested you climb into bed with him. And that is what you did. Your skin touched his while you caressed and comforted him. I felt your warmth. There you were in bed with your dying man, holding and cherishing him for as long as he remained alive. When I came back into the room after a couple of hours, the bed was a mass of tumbled sheets, the curtains still drawn tight as if night was still present. With Tim still in your arms, you calmly told me that this was the first time you’d been with someone as they died.

The third story aims to show that conscious acts of compassion within an organisation enable faith, hope and love to be expressed and maintained against all odds.

Her large round eyes glared straight at me as I walked into room 6 to meet this patient for the first time. ‘Hello’ I said while drawing up a chair towards her bedside. ‘Am I dying doctor? Am I dying soon?’ she asked straight out. ‘Is that what you’ve been thinking?’ I asked as she reached out for my hand. Gripping it tightly, she said: ‘I thought I was dying in the night, I was so terrified. I still am. What’s happening to me? I’m only 45 doctor, this isn’t right. I felt on my own last night, without my husband. I so want him here.’

Her enquiring eyes continued to hold my gaze. Her clammy, waxy complexion, her large distended abdomen, her tightly swollen legs spoke of an imminent death. Despite my 18 years in this specialty, I have never found this question easy to answer. I gently agreed with her hunch that she was now dying.

‘How soon will that be?’ she asked. I gave my usual response unsure if I’m ever softening the blow or not, that it was hard to know exactly as everyone is different; it could be soon but it could also be a few days yet.

‘If you could tell me that I had 3 days, 6 hours and 30 minutes left to live, I could cope with that better but this not knowing is so awful.’

A man that was obviously her husband walked into the room and went directly to the bedside to kiss his wife. His strong, sturdy body contrasted with hers that was barely clinging on to life. She hugged him tightly and sobbed into his sleeve for several minutes. She drew breath and said:

HOSPICE CARE

There is no ‘I’ without ‘we’ in palliative care

‘I’ve had enough. I’m so tired.’ ‘I know love’ he answered, ‘you can go now, it’s OK. You’ve fought so much and been so brave, you go now.’ ‘Oh I needed you to tell me that, I really did. But I don’t know how to die, how do I do it?’ ‘Just be at peace, be at peace’, he said as the tears rolled down his face.

She smiled and affirmed that their happy relationship had many good memories. His softness soothed her as if he had waved a magic wand over her, calming her terror into peace. As I walked down the corridor, people who passed smiled cheerily at me. I think I smiled back. I was aware that my step lacked its usual vigour. In the staff room, a colleague greeted me and asked how my morning was going. In truth, I felt as if my body had been blasted up against a wall. I am outstretched, immersed into the brickwork like a scene from a Tom and Jerry cartoon. I was stuck there for a while. The camaraderie with my colleagues comforts and helps me to peel away from the wall bringing me back to a firmer footing.

Ultimately, it was the aim of Cicely Saunders for palliative care to be about healing so that by attending to the mind, body and soul, suffering is diminished. Healing a person does not always mean curing a disease. Sometimes healing means learning to care for others – finding new wholeness as a family – being reconciled. Or it can mean easing the pain of dying or allowing someone to die when the time comes. Saunders (cited in Lucas, 2018, p135)

For any discipline in healthcare, to achieve this kind of care new skills have to be learnt. This will entail, either formally or informally, a conscious noticing of ourselves in relation to others whether in situations where we are the carers or receivers of care. As Lucas (2018) has written: Healing comes from within; a process of inner change away from suffering. Healing is not about curing. It is possible to die healed. It is also possible to be cured but not healed (p136). Since leaving medicine in 2015, I have spent time in Greece volunteering in refugee camps where people from Middle Eastern countries who have run from war and torture are in search of a safe haven and a better life. I don’t think any readers will be surprised to hear that there are many overlaps between palliative care and this type of aid work where faith, hope and love all stem from the common roots of our humanity.

References

Ballatt J, Campling P (2011) Intelligent kindness; reforming the culture of healthcare. Glasgow: RCPsych Publications, Bell and Bain Ltd. Clark D (2015) Works of love: Cicely Saunders and the hospice movement. Available at: Open democracy.net (accessed 6 April 2019). Lucas V (2018) On healing and palliative care. European Journal of Palliative Care 25(3) 134–7. Worline C, Dutton J (2017) Awakening compassion at work. The quiet power that elevates people and organisations. Oakland, CA: Berrett-Koehler.

●

Volume 16 Issue 2 Summer 2019

Mother, magic or medicine?

FAI T H I N T H E PAT I E NT

The psychology of the placebo David Zigmond

Physician in psychological medicine; retired GP

I wrote this 35 years ago. Then, I was working in a very different culture of general practice: its systems and technology were relatively primitive, but the opportunity for psychological sophistication was often much greater. My mentors had been very influenced by the psychoanalyst, Michael Balint, who had helped GPs develop their capacities for healing by paying attention to the subtext, the implicit and the ‘irrational’ in consultations. Yet more than a century later our serial reforms have systematised consultations so much that such knowledge is largely lost. I hope Mother, Magic or Medicine? may help us rediscover the value of what is now at risk of becoming extinct. © Journal of holistic healthcare

●

My initial medical training was in the 1960s. My subsequent decades of work have been as a frontline practitioner: as a small practice GP and a large hospital psychiatrist and psychotherapist. From the beginning of my work I have been intrigued by how we may best understand, balance and weave together art and science; humanism and technology; imagination and data. I believe that much of our current malaise in healthcare services is due to losing sight of these questions, and then our better sense and sensibility.

The placebo effect is a stark reminder that healthcare happens in the mysterious spaces between and within human beings; that it’s a skilled human activity and not simply a matter of applying technology. An overreliance on technical medicine may represent at best a defence against suffering; an inability to engage humanly is often a sign of practitioner boredom, burnout and depression. So it is ironic that although hard science is an incomplete basis for good practice, it now supports a resurgence in the art of medicine. Each drug has its specific action, and the context in which a treatment is delivered will boost or reduce these effects. We now understand that these non-specific responses are far from being ‘all in the mind’, and that mental and relational processes can and do translate into biological changes. Neuroscience implicates multiple brain systems and neurochemical mediators, including opioids and dopamine (Tor et al, 2015). In the light of this emerging paradigm of the mind in the body and the body in the mind, it is unscientific to think of powerful contextual responses as incidental to the specific treatment, or to dismiss them as ‘mere placebo’.

Volume 16 Issue 2 Summer 2019

In reality of course, we do not work in a vacuum and the art of communication has its proper place in all professional life. Yet these brain–mind–body responses – ‘humaneffects’ influenced by the clinician’s belief in the treatment and the patient’s belief in the doctor – somehow blur the boundary between subjective mind and objective body. If, as seems to be the case, faith and hope get entangled in the prescription in ways that can trigger the body’s regulatory processes, how would it change practice if clinicians were to optimise these effects rather than ignore them? Could we learn to work wisely and well in this borderland? The question is particularly relevant where bio-technical medicine has limited success – in long-term conditions and relapsing illness – areas where the ‘medicalisation’ of suffering risks over-diagnosis and with it all the hazards of over-investigation and overtreatment. Are we ready for the logical next step? Since whatever goes into the mouth or the skin also goes through the imagination, should not those who prescribe do their best to optimise these context effects? The article that follows was written at the inception of the BHMA, in the 41

FAITH IN THE PATIENT

Mother, magic or medicine?

mid-1980s at a time when psychosomatic medicine still held some sway in primary care. Its psychobiological underpinning was but a twinkle in the eye of neuroscience, yet even back then Herbert Benson was defining the placebo response as ‘remembered wellness’. At the BHMA’s founding conference David Zigmond presented the paper that follows. In it he suggested that a chemically ‘inactive’ prescription could act as a symbolic reminder of attachment and ‘remembered safety’. All this Dr Zigmond poured metaphorically into an ‘inactive’ medicine, that induced calmness in his patient’s otherwise distressed

‘Physicians must discover the weaknesses of the human mind, and even condescend to humour them, or they will never be called in to cure the infirmities of the body…’ Charles Caleb Colton, Lacon (1825)

It is not surprising that most contemporary observers and practitioners of medicine assume that drug treatment in medical and psychiatric practice is a kind of ‘pharmacological engineering’. A sample of any text or medical dialogue concerned with this subject is likely to support the notion of the doctor in his role of engineer; his diagnosis locates or defines a malfunction in the body, and his medical treatment is applied as a specific chemical remedy. The practice that follows is guided by purely technical considerations – finding the most specific drug for the problem, working out its route, dose and timing. Explanations as to how drugs work are similarly inclined – replacing depleted chemicals, neutralising acids, altering proliferation patterns in certain types of cell, inhibiting or catalysing specific chemical interactions – are common concepts used.

❛

Balint concluded that the repeat prescription often represented less of a treatment than a diagnosis

And yet while doctors and medical researchers work painstakingly to refine such scientific theory and its application, the patients themselves often have quite a different way of experiencing the doctor and his medicines. For example, the evidence that most drugs prescribed outside a supervised hospital setting are not taken at all, or not as prescribed (Parkin et al, 1976; Pearson, 1982) strongly implies that the doctor’s ‘scientific’ endeavours have quite a different meaning, or lack of meaning, for the patient. For all the technical talk among doctors of pharmaco-kinetics, serum concentrations, drug half-life and so on, if there is such a discrepancy between what a doctor assumes and intends and what a patient does, the questions arise ‘what is this activity, who is it for, and why does it exist?’ For the doctor, prescribing in the prescribed manner has a number of functions. It helps him pass the 42

body–mind each time it was taken. Arthur C Clarke famously said that any sufficiently advanced technology is indistinguishable from magic. Is the art of medicine actually a form of advanced technology, which now that science is overcoming the illusion that mind and body are separate, doctors will come to see as legitimate: whose mysterious and occasionally magical impact should be an essential part of their toolkit? Dr Zigmond offers three case studies that suggest we can incorporate faith, hope and love into our treatment materials.

David Peters

time with the patient in a way that offers him the security of familiarity, and confers on him the mantle of ‘physician’; a cloak of potency, authority and legitimacy. It legitimatises, too, his activities with his colleagues and gives him an identified place among them – they act in a similar way and so he is part of their group. It helps him feel helpful, even if this is not the help that is really needed; there are many studies suggesting this is often the case. The act of prescription may also provide the doctor with the comforting illusion that he is controlling or ‘managing’ the patient’s problem. The foregoing indicates a little of why, for psychological reasons, the doctor may have his own compulsive need to prescribe. The main emphasis of this paper, however, deals with the complementary pattern – the psychology of the patient’s need for drugs – which is equally fascinating and important. It is well established that placebos can have a positive therapeutic effect in a very wide range of disease processes in any bodily system (Doongaji et al, 1978). Placebo response to severe injury pain (Beecher, 1955) and angina (Benson and McCalle, 1979) are now classic studies. Severe mental disturbance in those labelled ‘chronic schizophrenic’ often responds to placebos (Silverstone and Turner, 1974). Some of the fragments of placebo psychology can be deduced from further research. A positive response depends upon an expectation of successful treatment (Lesse, 1962), a trusting and positive attitude to the administering doctors (Black, 1966), and the social status of the ‘healer’ (Silverstone and Turner, 1974). In this latter study, patients with a demonstrated peptic ulcer responded symptomatically to a placebo given by a doctor (70%), but much less with a nurse (25%). The deeper and symbolic meaning of the placebo – which this article discusses later – has received less attention. Among the most interesting studies is that of Balint (1970) who studied, over a period of some years, repeat prescriptions in general practice. He concluded that the repeat prescription often represented less of a treatment than a diagnosis – that the patient was wanting protection and reassurance from the doctor, but not direct contact with him. Such patients were emotionally needy but afraid of a more direct or intimate contact, and so settled for this ritualised ‘dose of doctor’ which represented a symbolic

●

Volume 16 Issue 2 Summer 2019

FAITH IN THE PATIENT

Mother, magic or medicine?

‘something’ that was ‘good, reliable, unchanging and always available’. Clearly this need is similar, if not the same, to those needs of security and protection that run throughout our infancy and early childhood, and Balint here equated the drug’s symbolic protection and goodness with mother, or earlier, the breast. Certainly Balint’s notion was supported by the observation of protest, rage or crisis of some kind when the doctor attempted to stop or change the drug, usually with ‘clinically sound’ reasons – the drug for the patient was not a mere ‘pharmacological agent’, it was a symbol of caring, security and regard; its withdrawal seemed threatening to the patient, far beyond any possible medical implications. Doctors’ training generally does not involve recognition of these important principles, and certainly the skills by which they may be marshalled and used therapeutically have received little attention. The ‘rational’, physical, components of prescribing have been pursued as a legitimate clinical study at the expense of those ‘irrational’, psychological, determinants which, as we have seen, may be decisive, for better or worse. This indifference, or implicit contempt for the placebo, seems to have coincided with the ‘pharmaceutical explosion’ in the 1950s (Doongaji et al, 1978). It seems that the world of medical therapeutics reflected in miniature much wider social processes – a consuming and increasingly exclusive interest in technology, at the expense of psychological and social needs that have been with us since our beginnings. The consequences of over-investment in technology and attention only to the manifest, at the expense of more radical but hidden human needs, is an increasingly pervasive theme in our culture. The following three cases go back to the ‘irrational’ in treatment for their guiding principles. At first sight it might be easy to discuss them as in some sense ‘unscientific’ or ‘quackery’, but, on closer inspection, the skilful use of such situations and transactions involves some kind of applied science of the early mind.

Case No 1: A bridge over troubled waters

A 62-year-old woman, Mrs F, was knocked off her moped by a car emerging from a side-turning, driven rapidly by a young man and without due observation. Mrs F was not seriously injured, but suffered painful bruising and lacerations. More troublesome for her were her symptoms of dizziness, shakiness, headaches and loss of confidence which the first doctor (Dr E) told her was ‘the shock coming out in you’, and for which he prescribed a tranquilliser. A fortnight later she returned to see a second doctor (Dr G) saying she felt worse; she still had the same symptoms, but now she felt ‘unsteady and tired all the time’. Dr G asked about the kind of thoughts and feelings she had toward the young driver, which led Mrs F to talk tentatively of her anger and resentment, which she had not previously expressed; ‘he was so kind and polite and apologetic . . . and I was too shocked at the time to say anything . . .’.

●

Volume 16 Issue 2 Summer 2019

But there was more to her resentment and sense of injury, which Dr G intuited from the little he knew of her. She had recently been made redundant from work, after 20 years with the same employers; they had themselves been bought out by a younger and more aggressive company, which had decided to streamline the old order. At the same time, her husband had recently become ill with angina, following soon after his retirement. Her three children in recent years had married, moved away and become increasingly involved with their young families. In short, she was facing a period of rapid change and loss where the old order, and her familiar roles, were no longer viable or valued. Dr G had acknowledged and shared this dilemma with her, for brief periods, when she had seen him on two previous occasions. On this occasion, behind the miscellany of her physical complaints, Dr G was touched by the tears which kept welling up in Mrs F’s eyes, only to be quickly dabbed away with selfdisparaging apology. After an intimate pause of a few seconds the doctor said softly ‘I imagine your whole life at present is a bit like riding your moped. Trying to retain your balance and sense of direction while larger more powerful cars pass you by, often blindly, not aware of your vulnerability. It must have seemed like the last straw when that young man knocked you down. . . Perhaps it’s unavoidable that you have strong feelings about this; if that’s so, I think you’ll need to face and talk about your feelings, rather than take tranquillisers to pretend they’re not there.’

Mrs F sat and cried for about a minute. Dr G was attentive but silent. This time she did not wipe away her tears, either literally or with apologies. ‘You’ve been a great help doctor, helping me express my feelings like that. You’re right, they are my feelings and I do feel better just talking about them. I don’t want a drug that ‘gets into my system’ – what about a good old-fashioned tonic?’ Dr G’s response, a prescription for a multivitamin syrup, was accompanied by his comment: ‘I think you will feel stronger and more able to cope with this. Come and see me next week.’

Mrs F did indeed feel much better with her ‘tonic’. ‘I know I have to get my confidence back myself, doctor, but that red medicine does me a power of good. I’d like it for just another week and then I think I’ll be all right.’

Her request complied with, her prediction proved correct.

Comment What had Dr G done that was different from the first doctor, and can we deduce any scientific principles, even if in embryonic form, to account for his effectiveness? Dr E had attempted to label and rapidly dispose of Mrs F’s feelings by didactic reassurance and tranquillisers. He diagnosed ‘shock’ without, in any way discovering what this shock had meant to her, and thus his verbal help could extend only to sympathy, not empathy. Dr G, however, had entered into her world a little, and understood something of her distress before making any attempt to change it. His intervention, when it came, was an empathic act; Mrs F felt validated and accompanied by 43

FAITH IN THE PATIENT

Mother, magic or medicine?

Dr G in her hurt and despair. With Dr E, on the contrary, she had felt alone, alienated and discounted. Dr G had offered her, in a symbolic, brief but skilled form, an embracing and protective presence – those elements of successful parenting that all children need successfully, to pass through the many hurts and crises of childhood.

❛

We do not grow out of childhood, we grow over it

In the words of Guntrip (1964) ‘we do not grow out of childhood, we grow over it’ and it is this child within us that re-awakens and cries out in times of stress. Dr G sensed that it was not enough to give Mrs F adult reassurance, he had to somehow establish a dialogue with her inner child, before the panic could be calmed. He knew also that her request for a ‘good old-fashioned tonic’ was Mrs F’s primitive need for a symbol of the doctor’s concern, protection and understanding which she could take with her, and literally ingest, when he was no longer with her. Balint (1957) talked of patients taking ‘a dose of doctor’ to describe the device of extending, symbolically, the therapeutic relationship. The following two cases explore this theme further.

Case No 2: A balm for grief

Mr D was 78 years old when his wife died. She had suffered a stroke two years previously, which had left her chairbound, dysphasic and dependent on her husband for all her domestic needs and the little contact she had with the outside world. Mr D provided this with great compassion, fortitude and humour, despite his own age and frailty. Her intense dependence on Mr D led to a strength of feeling and an intimacy between the two old people that had previously only existed 50 years before, at the beginning of their marriage. When she died, Mr D, despite his tears of grief, acted with the same courage and independence as before. Two weeks later, after he had completed all the funeral arrangements, he developed shingles on his chest wall and sought Dr E’s advice. The doctor, after explaining the medical nature of the problem and offering a sympathetic warning to Mr D that he would probably experience several weeks of pain, sat back in his chair saying reflectively to Mr D ‘These must be hard times for you. I’m sorry I can’t offer you more.’ The old man sat silently and sadly for a short while, looking at the floor. Raising his eyes to Dr E he said ‘I feel there’s a big hole inside me – like somebody has taken something away.’ ‘Yes,’ the doctor concurred, ‘I think losing those we love does leave holes in us which we can never really fill in. Sometimes, though, with time, good new things can grow around the holes.’ Mr D smiled wistfully at his doctor before leaving with his prescription. ‘I think the talk with you is my best medicine, doctor. I don’t feel so alone now.’

Long after any specific medication could affect Mr D’s shingles, he was continuing to want ‘something to rub into

my skin’ even though his skin was now clear and he had little in the way of residual pain. The doctor had at first resisted prescription, countering Mr D’s request with a medical explanation of how it was impossible for a cream to now help his condition, which was largely resolved anyway. The old widower’s eyes looked blankly at the doctor during his didactic effort, and then changed to an expression of hurt when he had finished. ‘I suppose you’re right doctor but I feel ever so much better if I have something to rub in … ‘ Dr E now realised that it was not pharmacology that was required of him, but a kind of symbolic mothering. An inert cream, not recommended in any medical text, brought an expression of relief and seemingly inordinate gratitude from Mr D.

For three years the old man walked slowly round to see his doctor, to collect his prescription for his simple cream. He insisted on seeing the doctor personally; collection from the receptionist was not enough. The medical business of his consultations was perfunctory, the important transactions concerned the sharing, if only briefly, his world and feelings.

Mr D died alone, asleep in his bed, unexpectedly one night. Dr E was summoned by the neighbours to certify his death. Beside his bed were his dentures and spectacles, a glass of water, and a large pot of cream he had collected from his doctor two days earlier.

Comment Mr D, like Mrs F, was facing a dramatic and painful change in his life. While more concretely-minded sceptics might claim that his outbreak of shingles was coincidental to his wife’s death, it seems clear that the ‘treatment’ Mr D wanted from his doctor was of some kind of representation of the doctor’s understanding and permissive presence. Dr E had empathised with his aloneness and the grief and hurt that were expressed more by his body than by his words. The cream, for Mr E, was a way for him to have continuous, if symbolic, access to the palliative and nurturing presence of his doctor. The familiar religious symbols of Holy Bread and Water may confer on the believing recipient a sense of purification, forgiveness or strength; the clinical situation here is probably analogous, Mr D receiving from his cream a sense of caring attachment. Many writers and researchers have stressed the importance of touch in the mental and physical development of the young child (Spitz, 1945; Harlow and Harlow, 1966) and the continuing health of the adult (Berne, 1961). Healing or palliative procedures based upon touch have a long history, and are still prevalent in Eastern medical practice. For the distressed infant, the touch of a protective adult is probably the most effective non-specific remedy. Even as we grow older, touch remains among the most potent and direct antidotes to pain, panic and distress. Mr D’s choice of a ‘touching’ medicine – ’something to rub into my skin’ – probably indicated a wish for this most basic of comforts, as a balm for the most basic of pains; the loss of a loved person.

●

Volume 16 Issue 2 Summer 2019

FAITH IN THE PATIENT

Mother, magic or medicine?

Case No 3: Mother’s milk

When Mr S, a solitary man of 40 years, became the centre of an angry cacophony in Dr T’s waiting room, the doctor became apprehensive, but was not surprised. Mr S, he knew, had a lifelong tendency to violent outbursts, though never before with the doctor or his staff. Most previous contacts with the doctor had been for fairly simple requests, and on these occasions Mr S had had a rather submissive, faltering and lost manner; Dr T had the fleeting mental image of a small boy searching for a (his?) father. Dr T could recall other times when Mr S had come for ‘tonics’ or hypnotics; the preceding events had usually followed a similar pattern: he would react impulsively and sometimes violently to a real or imagined slight or rejection, to be followed by a period of remorse, confusion and despair. Predictably, he was often unemployed, had spent several short periods in prison, and lived alone, as no partner could tolerate his periodic and explosive violent tantrums. After such episodes Mr S would seek help from his doctor, and would bring with him an air of injured dejection and deflation. It was at these times, in a rather piecemeal way, that Dr T learned something of the life of this hurting and hurt man. Mr S had suffered from the most elementary and early of hurts – the loss of both parents before he could remember. An accidental and illegitimate conception, he had spent his childhood from infancy in a variety of threadbare orphanages and, later, borstals. As far back as he could remember, he had been haunted by the fact of his early rejection, and had developed a primitive and only partially conscious notion of others as being untrustworthy and hurtful; a notion which he would spuriously validate for himself by provocation. Ten years previously, following a depressive reaction to one of his destructively cathartic episodes, a local psychiatrist had referred him to a unit specialising in a therapeutic community approach to ‘psychopaths’. To Mr S’s further sense of injury, he was rejected for having ‘insufficient insight or motivation to make use of the group-therapy approach’.

The affray occurring in the waiting room at first involved only the receptionist. Dr T had no appointments left that morning except for ‘genuine medical emergencies’, which did not seem to apply to Mr S, as the receptionist tried patiently to explain to him while offering an appointment that afternoon. The receptionist’s positive efforts were rapidly swept away by a rage in Mr S that could not be reasoned with. ‘I DON’T CARE,’ he bellowed, ‘I’VE GOT TO SEE THE F******* DOCTOR NOW.’ The doctor, his more routine and polite consultation quickly terminated, and realising he was dealing with an emergency (even if not ‘genuinely medical’), entered the waiting room, much to the relief of his rather frightened and confused receptionist. ‘You seem to be very upset about something, and if you wait for only about half an hour I’ll have some time for you . . .’ While saying this the doctor looked directly at Mr S while putting a hand firmly but comfortingly on his shoulder; he felt Mr S instantly stiffen at his first touch, and then yield a second later, as if he suddenly found a sense of trust and acceptance in his doctor. ‘I have this terrible feeling doctor, I’m afraid I’ll explode, go mad and kill somebody . . . I’m afraid of what I may do . . .

●

Volume 16 Issue 2 Summer 2019

I didn’t know who else to tell.’ The doctor, asking Mr S to describe recent events, established that he was reacting, again, to an event which Mr S interpreted as being a personal slight and rejection. It was, in reality, more likely to be the inflexible, but impersonal, bureaucracy of the Social Security Office. After talking for some minutes of the variety and threatening intensity of his feelings, Mr S sat back in his chair exhausted, lost and on the point of tears. Pausing deliberately, Dr T then said quietly: ‘You know, I imagine that all these feelings you have are the same ones you had when you were a little boy and you felt unloved and that something bad was going to happen to you. I think at those times life really did hurt you in a way you couldn’t understand, and all those experiences have led you to thinking that the same kind of things are happening to you now, even when they’re not … and then you get all those old feelings crowding in on you. That desperate and unhappy little boy in you wakes up, and cries out, and starts fighting for his life . . .’

‘That’s true, that’s exactly how I feel . .. But what can I do, doctor?’ replied an attentive and thoughtful Mr S.

‘Well, what would the ‘grown-up you’ want to say to the ‘little boy you’, knowing what he does?’

‘I see what you mean … I’ve never thought about it like that … I think I’d like to say to him ‘You really had it rough and I feel sorry for you … but you’re the past and I mustn’t let you run my life now’ … But how can I do that, doctor, I mean when I get upset I just see red and get mad and lose control of myself. I just can’t help it …’ Mr S pleaded.

Dr T was insistent, if kindly, in his disagreement of this last statement. ‘Well, I don’t agree that you can’t control your actions. You can, but I understand that it’s very hard for you and that you may need some help. I have an idea to help you, but it will only work if you want it to, and if you follow my instructions carefully. Will you do that?’ he asked, looking at Mr S steadily. ‘Yes, I will . .. I do want to try something. . .’

‘What I suggest to you is simple but you must do it properly for it to work. When you feel the beginning of one of your strong feelings of panic or anger you must sit down quietly somewhere and suck one of the tablets I’m going to give you. Suck it and don’t swallow it whole; you’ll find it has a soothing effect as it goes down, first in your throat and then in your chest and stomach. When you’re sitting there I want you to think about what we’ve been saying, and to have an imaginary talk with that little boy inside you. The tablet will calm you when you’re doing this.’ At this point Dr T reached forward to touch the hand of Mr S briefly but significantly. ‘I’ll give you 40 tablets to begin with and I want you to come and see me at the end of the week to let me know how you are.’

Dr T’s prescription was simple but thoughtfully chosen – a more uncommon antacid/antiflatulent tablet with a pleasant milky flavour.

Mr S two weeks later claimed that ‘those tablets have really done the trick. I know that if I’ve got them with me and do what you say then I won’t get so upset or ‘blank out’ … ‘ He returned every few weeks to collect some

FAITH IN THE PATIENT

Mother, magic or medicine?

more tablets and to talk with the doctor who would reinforce Mr S’s new patterns and help him, in a piecemeal kind of way, with the thoughts and internal dialogues Mr S discovered, often while sucking. Two years later Dr T’s unusual therapy had proved its underlying psychological theory. Mr S had not been radically transformed as a personality but he had sustained those important controls which enabled him to hold a single job for longer than at any previous time and remain free of the kind of violent outbursts that had been his previous hallmark. The price of this was a limited psychological dependence on his doctor and his antacid tablets.

Comment and conclusion There are a number of principles and metaphors we may use to describe and explain how this doctor made effective and sophisticated use of the most basic therapeutic tools. He recognised that the disturbance in Mr S was occurring at an early child, even infantile, level of his mind, and that his communications had to be made accordingly. Reasoning, threatening or bargaining with Mr S’s ‘grown up’ part had been tried many times before and never with success. On the hypothesis that the outwardly aggressive Mr S harboured an inwardly frightened child reacting to some fantasised danger, Dr T knew that he must quickly make an alliance or rapport in a way that was both age and feeling appropriate. The careful choice of touch, simple words and eye-contact were designed to engender feelings of security and inclusion in Mr S, who was previously feeling alienated and turbulent. It was not enough for Mr S to be ‘tranquillised’ in this way only while receiving Dr T’s attentions. His life had to be lived outside the consulting room, and Dr T had to find a way of helping his patient take with him an internalised representation of the doctor, which he would re-evoke at crucial times of stress and threat. Common notions of hypnotism usually call to mind formal procedures of trance-formation, but hypnotic suggestions may be made in ways far more various and subtle, as much recent work indicates (Brander and Grindler, 1975). Dr T’s deliberate emphasis of certain words, pausing at certain times and touching Mr S when he wished to make a particular impact, were all ways of ‘anchoring’ his message, of making a lasting hypnotic-association and imprint (Brandler and Grindler, 1979).

❛

In an age obsessed with increasingly complex technological activity…it is often a valuable challenge to re-examine and develop more intimate and human skills

❛

Long after the infant has drawn nourishment from his mother’s breast, he continues to draw a sense of comfort and security from the use of his mouth, particularly when sucking. The persistence of this need into adulthood is often masked, channelled and ritualised, but remains ubiquitous. Dr T used this most natural of tranquillisers very directly in his choice of a white, sweet ‘sucking’ medicine, and in doing so also took the opportunity to reinforce and anchor his earlier (hypnotic) suggestion. As we grow into early childhood we have, increasingly, to learn to live without mother’s omnipresence and undivided attention. This difficult process of separation is often accompanied by various manifestations of fear, protest and anger on the child’s part, and he may often turn to an inanimate object as a source of solace. Teddybears, dummies, blankets are all familiar ‘transitional objects’ (Winnicott, 1958), helping the child face the unknown outside world. The child confers on the object special powers that once belonged only to mother. This need, too, persists into adulthood and is likely to become more intense in periods of stress and loss, where those much earlier feelings of peril and aloneness are reawakened. All three cases described illustrate the process where the doctor’s medicine had become a kind of transitional object. Mr D (Case No 2) faced his last years accompanied, not by a loved-one by his side, but by a tub of cream into which he projected loving qualities; a rather sad substitute, perhaps, but one which brought him great comfort. In the film The Wizard of Oz the young heroine, Dorothy, believing in the Wizard’s powers, finds resources and courage in herself with which to confront the Wicked Witch of the West. She does not know, at first, that the Wizard is only an ordinary man with no more power than she; it is her belief in him which enables her to face those things she would have previously fled from. These principles, too, lay behind the successful placebo-effect in all three cases, and are well substantiated by experimental evidence (Lesse, 1962; Black, 1966; Silverstone and Turner, 1974). The last principle I wish to outline is quite as important in practice. In the cases described, the practitioners entered into their patients’ mental world, in an intuitive and empathic manner, before confidentially prescribing the placebo. Recent investigators (Balint and Norell, 1972) described what they termed ‘The Flash’ in the medical interview where the doctor, leaving behind the usual protocol and ritual, is freer to understand the inner and existential dilemma behind his patient’s presenting complaints. While this often seems an essential component of successful placebo prescription so, too, is the skilled application of principles of how the child’s mind develops (developmental psychology), and how this ‘child-residue’ is manifest and operating in the adult (psychodynamics and psychopathology). This is particularly so when dealing with the kind of character problems illustrated by Mr S. The other two cases, depicting some kind of life crisis amid periods of rapid

●

Volume 16 Issue 2 Summer 2019

FAITH IN THE PATIENT

Mother, magic or medicine?

change and loss, but against a background of otherwise stable personality structure, are undoubtedly easier to deal with but involve similar qualities of interest, flexibility, dexterity and genuineness from the practitioner. It is interesting to note that these seem to be the most important elements of effective psychotherapy generally (Truax et al, 1966). Some practitioners might object that such endeavours are too time consuming to be practical. It is noteworthy, however, that even the relatively complex but crucial interview with Mr S took a little over 25 minutes. Dr T would probably have spent more time and energy dealing with the repercussions, had he refused to see his desperate but accessible patient. Others might balk at the very idea of placebos, all too frequently used ineffectively and crudely as an act of blind, simplistic reassurance or, worse, a cynical and deceptive ‘quick trick’ to get rid of a ‘troublesome’ patient, under the guise of being helpful. However the intention and (lack of) scientific basis lying beneath such patterns of practice are quite different from the three cases described, where the process of diagnosis and selection was of quite a different order; they should not be confused. In an age obsessed with increasingly complex technological activity and accompanying official (often vacuous) slogans such as ‘The Treatment of the Mentally Ill in the Community’ it is often a valuable challenge to re-examine and develop those more intimate and human skills that, despite protean fashions in technology, remain a cornerstone of practice. Healing involves far more than physical engineering. The placebo effect serves well as an example.

Balint M, Norell JS (eds) 1972) Six minutes for the patient. London: Tavistock Publications.

References

Truax CB, Wargo DG, Frank JD et al (1966) Therapist empathy, genuineness and warmth and patient therapeutic outcome. Journal of Consulting Psychology, 22, 331–334.

Balint M (1970) Treatment or diagnosis. a study of repeat prescriptions in general practice. London: Tavistock.

Winnicott DW (1958) Collected papers. London: Tavistock Publications.

Brander R, Grindler J (1979) Frogs into princes. Utah: Real People Press. Brander R, Grindler J (1975) The structure of magic I & II. Science & Behaviour Books. Beecher H (1955) The powerful placebo. Journal of the American Medical Association, 159, 1602–1606. Benson H, McCallie DP Jr (1979) Angina pectoris and the placebo effect. New England Journal of Medicine, 300, 1424–1429. Berne E (1961) Transactional analysis in psychotherapy. New York, NY: Grove Press. Black AA (1966) Factors predisposing to a placebo response in new patients with anxiety states. British Journal of Psychiatry, 112, 557–567. Doongaji DR, Vah1a VN, Bharuch MP (1978) On placebo responses and placebo responders. A review of psychological, psychopharmacological and psychophysio-logical factors I & II. Journal of the Postgraduate Medical Association, 24, 91–97; 147–157. Guntrip H (1964) Healing the sick mind. London: Allen & Unwin. Harlow HF, Harlow MK (1966) Learning to love. American Scientist, 54, 244–272. Lesse S (1962) Placebo reactions in psychotherapy. Diseases of the Nervous System, 23, 313–319. Pearson RM (1982) Who is taking their tablets? British Medical Journal, 285, 757–758. Parkin DM, Henney CR, Quirk J, Crooks J (1976) Deviation from prescribed drug treatment after discharge from hospital. British Medical Journal, 2, 686–688. Silverstone T, Turner P (1974) Drug treatment in psychiatry. London: Routledge & Kegan Paul. Spitz R (1945) Hospitalism. Genesis of psychiatric conditions in early childhood. Psychoanalytic Study of the Child, 1, 53–74.

Balint M (1957) The doctor, his patient and the illness. London: Pitman.

●

Volume 16 Issue 2 Summer 2019

Faith discrimination in the NHS: multiple penalties facing Muslim doctors R E L I G I O U S FAI T H

Hina J Shahid

GP; Chairperson, Muslim Doctors Association

Belonging to a faith group supports wellbeing which benefits doctors and their patients. However, anti-Muslim sentiments in society as a whole bear down on health workers. The NHS needs to protect staff from prejudice and violence but also be proactive in supporting faith practices which help prevent stress and burnout. This requires better awareness and processes across organisations, today more than ever.

Having a mixed heritage and growing up in three different countries made me curious and respect and accept differences from a young age. I was fed up with opening the newspaper every morning with headlines about male Muslim terrorists and oppressed Muslim women. I started doing community engagement work and working with the media to encourage dialogue, challenge prejudice and present an alternative narrative. Working in public health, humanitarian medicine and as a GP in an inner city practice have deepened my understanding of global, structural and social influences on health and healthcare institutions. The Dr Hadiza Bawa-Garba case really brought this home, raising uncomfortable questions about an institution I deeply cherish and that is regarded as a national treasure.

Introduction The NHS is the fifth largest employer in the world and prides itself on its diverse values. BME staff make up 19% of the NHS workforce (Home Office, 2018). The NHS Employers diversity and inclusion team supports improved equality, diversity and inclusion within NHS organisations and one of the priorities listed for 2018/19 is to better understand wider faith and belief issues (NHS Employers, 2018). It is estimated that just under 10% of the doctors in the NHS are Muslim (NHS Digital, 2016). Belonging to a faith group has been demonstrated to support positive wellbeing, which is an asset in the current NHS climate with increasing levels of stress and burn out. However, there are concerns reported by Muslim doctors which have been amplified since the Dr Hadiza Bawa-Garba case; a landmark case that raised questions on religious discrimination in the NHS and associated regulatory and professional bodies.

British Muslims and Islamophobia – historical, social and political context There are 2.8 million Muslims in the United Kingdom comprising just under 5% of the population. (Office for National Statistics, 2011). The presence of Muslims in Britain spans several centuries, and the influence of the Islamic world even longer in European arts, architecture, science, mathematics and philosophy. Research indicates that British Muslims feel a strong sense of religious identity, but that they are also more likely than the British public as a whole to say that their national identity as British is important to them. (Kaur-Ballagan et al, 2018)). A recent report shows that Muslims have the highest level of life satisfaction and wellbeing compared with other faith and non-faith groups (Edinger-Schons, 2019). Yet, there is depressing evidence demonstrating discriminatory outcomes faced by British Muslims in housing, education, employment, the criminal justice system, social and public life and

●

Volume 16 Issue 2 Summer 2019

RELIGIOUS FAITH

Faith discrimination in the NHS: multiple penalties facing Muslim doctors

political and media discourse, and that this has enormous social, economic and health consequences for society (All Party Parliamentary Group on British Muslims, 2018). More disturbing still is the increase in violence and hate crimes targeting Muslims in the UK. Muslim adults are more likely to be victims of racially motivated hate crime than other adults including those of other and no faith (Home Office, 2018). This continues to increase year on year with a consistent trend towards targeting Muslim women (Tell MAMA, 2017). Although anti-Muslim sentiments and persecution in the west have a long history – whether as a pretext for medieval crusades, or for legitimising European colonialism – spectacular recent events that have intensified these sentiments into more conspicuous hatred and division in the public consciousness include Salman Rushdie’s Satanic Verses affair, the protests around the Gulf War, the 9/11 Twin Towers and London’s 7/7 tube bombings, homegrown Isis ‘jihadis’, ethnic and religious media stereotypes of a ‘clash of civilisations’, identity crises, poverty, criminality and political discourse linking Muslims with extremism and terrorism (Elahi and Khan, 2017). Here too, there is a notably gendered element, with a national poll revealing that 70% of the population perceives Islam as encouraging the repression of women and that wearing a headscarf is widely seen as symbol of this oppression (YouGov, 2010). These views are mirrored by the rise of nationalism and populism and growing support for far right and alt-right political groups.

This trend is particularly relevant for doctors. During the Dr Hadiza Bawa-Garba trial, a vitriolic smear campaign was launched against her by right-wing political groups and mainstream media and social media. Yet she was not offered any protection or support by her Trust, Royal College, General Medical Council or Higher Education

●

Volume 16 Issue 2 Summer 2019

England. A view widely held by front-line doctors was that Dr Hadiza Bawa-Garba, a visibly Muslim female doctor, was an easy target and scapegoat for the widespread systemic failures that contributed to her predicament.

Whatever the term chosen – anti-Muslim hatred, antiMuslim prejudice, Islamophobia – there is a pressing need for formal recognition of anti-Muslim hatred in all its manifestations. If Muslim healthcare staff are to be protected from violence and prejudice they need to be assured that transparent, accountable systems are in place in all private, public and civic spaces, and this must include especially the NHS and its associated regulatory, professional and employment bodies. The term Islamophobia was first coined by the Runneymede Trust in 1997 (Runneymede Trust, 1997) but it was only in 2018 that the All Party Parliamentary Group on British Muslims adopted a formal definition, which has since been accepted by the Labour Party and a number of cities in the UK. ‘Islamophobia is rooted in racism and is a type of racism that targets expressions of Muslim-ness or perceived Muslim-ness’ (All Party Parliamentary Group on British Muslims, 2018). The revised Runnymede definition of Islamophobia also has its roots in racism and similarly argues that the focus should be on people and perception rather than on ideas/ideology (Elahi and Khan, 2017).

Religious discrimination and legislation in the UK Development of anti-discrimination legislation in the UK has been reactive rather than proactive, prompted by broader national issues. The Equal Pay Act 1970, the Sex 49

RELIGIOUS FAITH

Faith discrimination in the NHS: multiple penalties facing Muslim doctors

Discrimination Act 1975, the Race Relations Act 1976, the Disability Discrimination Act 1995, and the Disability Rights Commission Act 1999 (McClean, undated) have been mostly replaced by the more recent Equality Act 2010. The overlapping of race and religion makes them particularly difficult to disentangle, and all the more challenging to discern the specific and distinct impacts of religious discrimination. Although the Race Relations Act was passed in 1976 no effort was made to address religious discrimination until much later. Only in 2003, did the Employment Equality (Religion or Belief) Regulations make it unlawful to discriminate against those in vocational training and employment on grounds of sexual orientation and religion or belief. More general provisions were enacted in the Equality Act 2006, now replaced by the Equality Act 2010, whose guidance related to religion is shown below.

Equality Act 2010: Religion or belief

1 Religion means any religion and a reference to religion includes a reference to a lack of religion. 2 Belief means any religious or philosophical belief and a reference to belief includes a reference to a lack of belief. 3 In relation to the protected characteristic of religion or belief: (a) a reference to a person who has a particular protected characteristic is a reference to a person of a particular religion or belief

(b) a reference to persons who share a protected characteristic is a reference to persons who are of the same religion or belief.

The Equality Act 2010 is very comprehensive and also provides guidance and recommendations for employers, which includes all public authorities under the public sector equality duty. The Act describes four types of discrimination: direct discrimination, indirect discrimination, harassment and victimisation as demonstrated in the box below. Additionally, the Act highlights key areas where discrimination by employers can occur: recruitment, taking time away from work for religious reasons, and dress code and appearance.

Equality Act 2010: Discrimination

1 Direction discrimination – including ordinary direct discrimination because of a protected characteristic they protect, direct discrimination by association and direct discrimination by perception.

2 Indirect discrimination – less obvious that direct discrimination and can often be unintended. It is where a criteria or practices is applied equally to a group of employees’ job applications but results in putting those with a shared certain protected characteristic at a particular disadvantage and the employer is unable to justify it.

3 Harassment – can be verbal, written or physical and may include nicknames, threats, insults, jokes, ‘banter’, inappropriate questions, exclusion, inappropriate physical contact.

4 Victimisation – where an employee suffers ‘detriment’ causing disadvantage, damage, harm or loss through raising grievances concerning equality or discrimination.

Source: Advisory, Conciliation and Arbitration Service, 2018

Institutionalising religious discrimination

Institutions and work environments are shaped by the geopolitical and social forces in which they operate. Research indicates that Muslims are the least likely social group to work in senior professional roles in the UK (Ali, 2015). Widespread Islamophobia, racism and discrimination, negative stereotypes, lack of Muslim role models, bullying and harassment are implicated as factors holding back Muslims in the workplace. (Stevenson et al, 2017). In particular, women wearing headscarves face worse discrimination in the workplace through experiencing the ‘triple penalty’ impacting on their job prospects: being female, being from an ethnic minority and being Muslim (Stevenson et al, 2017 and House of Commons Women and Equalities Committee, 2016). Unfortunately, these trends also filter down to healthcare institutions. Research on racial disparities for healthcare staff has consistently demonstrated clear differences in attainment, for instance the relative lack of BME representation in leadership positions, along with a worrying trend of increasing discrimination against BME staff and that a high proportion are affected by formal disciplinary process (NHS Equality and Diversity Council, 2018). BME doctors are more likely to be complained about, be investigated and to have higher sanctions imposed on them. They are also more likely to be disciplined, to fail their postgraduate exams and to be erased, suspended and/or face criminal conviction (Humphrey et al, 2011; NHS England, 2017; Esmail and Roberts, 2013). Research on actual religious disparities in the NHS is an area of increasing interest, though as yet evidence is scarce. A King’s Fund Report demonstrated that healthcare staff from all religions experience discrimination on the basis of their faith, but by far the highest is towards Muslims (West et al, 2015). It is therefore not surprising, but still depressing, that despite making up approximately 10% of the medical workforce, only 2.5% of managers and 1.7% of senior managers are Muslim (NHS Digital, 2016). Additionally, various work policies, which have been highlighted as potentially institutionally anti-Muslim, may contravene equality legislation. The Prevent policy has been accused of contributing to stereotypes that link Muslims with terrorism. It has been cited as causing moral distress among doctors, especially Muslim doctors, who view it as a racist policy which, exacerbated by structural issues in the NHS, and by politicising and securitising the © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

RELIGIOUS FAITH

Faith discrimination in the NHS: multiple penalties facing Muslim doctors

NHS work environment, create an atmosphere of fear, distrust, self-censorship, reluctance to vocalise dissent or concerns around freedom of conscience (Younis and Jadhav, 2019). Trusts’ dress code policies are an area of concern where science, safety and religion potentially conflict. For instance the ‘bare below the elbows’ policy, that links work clothes with transmission of infection, is bound to create difficulties for female Muslim doctors, and in some cases, may prevent them from pursuing a career in hospital medicine and surgery (Malik et al, 2019). Additionally, as trusts have no consistent policies about headscarves in operating theatres, women wearing the headscarf face discrimination in surgical jobs such as breast surgery and obstetrics and gynaecology, specialties desperate for female doctors.

Individual experiences and intersectionality International studies have shown that American Muslim doctors on the front line report feeling greater scrutiny at work, religious discrimination and lack of career progression (Padela et al, 2016). In Canada, Muslim female health professionals report a lack of support from management, being judged by colleagues, social pressures affecting wellbeing, perceived incompetence and a lack of acceptance by colleagues and patients (Siddiqui, 2012). A recent report highlights the growing pressures facing ‘disillusioned’ NHS staff causing low morale, feelings of stress and burnout and leading to exodus of staff and a deepening workforce crisis (NHS England/Improvement, 2019). If in addition institutional and environmental elements are working against them, this may add to stress and fuel burnout. A rapid review conducted by the Muslim Doctors Association (Shahid and Abdulkareem, 2018) confirmed the ‘triple penalty’ observed in other sectors. However, further narrative reports currently being collected as part of more formal research indicate that discriminatory systems are more complex. Through the lens of intersectionality one can see how ‘layer after layer of inequality’ intersect to increase vulnerability and discrimination faced by Muslim doctors who have multiple protected characteristics as defined by the Equality Act 2010 (Wiley, 2018). Some quotes – all from female Muslim doctors – have been extracted from narrative accounts currently in collection,

speak English, it’s the lack of friendliness during induction in new jobs where I don’t know anyone, it’s the assumption that I don’t know the system or am new to the UK or am not in a training programme, it’s the assumption that I will not be able to do my job well and the constant having to prove myself with each new rotation. It’s the eye rolling from the nurses and seniors when asking questions, it’s the surprised reaction that actually I am a ‘normal human being’ who is relatively competent at her job with outside interests and hobbies’ Paediatric specialty trainee year 6 doctor

‘“You can’t wear that thing in theatre” (said the consultant while pointing at my scarf in front of the scrub nurses and registrar). I removed by headscarf and put a surgical cap over my head. “There. Much better. No need to wear a rag on your head all of the time is there?”’ Foundation year two doctor

Gender inequality is a reality for women in medicine, for they experience under-representation in leadership positions, academia and competitive medical specialties, and a gender pay gap (Rimmer, 2017). Most Muslim doctors in the NHS are from BME backgrounds and so face these obstacles as well as the racial disparities already discussed. The narrative accounts confirm these gender and racial disparities but indicate too that being ‘visibly’ Muslim (wearing a headscarf), being an international medical graduate, and being a junior doctor further increase vulnerability and risk of discrimination (Figure 1). The narrative accounts highlight the day-to-day challenges and assumptions faced by female Muslim doctors and the feeling of not belonging in the team. Other consistent themes emerging from narrative reports include negative stereotypes and prejudice, intimidation, harassment and

‘The registrar would bleep me several times on purpose after I told him I was going to go to pray and be back in 10 minutes. When I’d return I’d see him laughing and saying “that was a long prayer, didn’t God tell you that you have jobs to do?”’ Foundation year one doctor

‘Although I have rarely experienced overt prejudice mine is more subtle. It’s the assumption through the questions from others that I don’t

●

Volume 16 Issue 2 Summer 2019

Figure 1: Intersectionality: multiple penalties affecting Muslim doctors

RELIGIOUS FAITH

Faith discrimination in the NHS: multiple penalties facing Muslim doctors

bullying, lack of acceptance by colleagues, issues with career progression and academia, lack of formal support around raising concerns, and negative impact on stress and wellbeing. However, despite the impact that religion may have on experiences of Muslim doctors working in the NHS, faith remains a strong part of the identity of Muslim doctors and an important means of coping with stressors and adversities. It is therefore imperative not just to tackle the problems Muslim doctors face but also to support faith practices proactively and the beliefs that form such a core part of their identify and sense of wellbeing.

Looking ahead Awareness of these challenges and the work that needs to be done presents the NHS with important opportunities. The NHS Employers diversity and inclusion team has expressed its commitment to better understand wider faith and belief issues (NHS Employers, 2018). This is also reflected in the NHS Long Term Plan’s pledge to ensuring diversity in leadership, recognising as it has, that a diverse workforce at all levels will lead to increased organisational efficiency and improved patient outcomes (NHS, 2019). Improved collection on faith data is necessary as a first step, with a view to creating a faith equality index, similar to the race equality index, which would improve monitoring of diversity, inclusion and representation of Muslim doctors across NHS organisations. It is misleading for organisations to state that they are truly diverse and inclusive when doctors feel unable to practise their faith freely and ‘bring their whole selves to work’. Further studies need to be conducted to explore the prevalence and impact of unconscious bias, the religious discrimination faced by NHS staff working on the frontline, and the attitudes of management and policy leaders.

❛

It is misleading for organisations to state that they are truly diverse and inclusive when doctors feel unable to practise their faith freely

❛

There is a need for improved awareness, dialogue and processes for tackling religious discrimination and improving faith equality. This could be done through collaborative engagement between the relevant organisations in the field of faith, regulation, professional accreditation, academic and training bodies, and employment institutions. Importantly, work environments need to adopt a zero tolerance policy towards racial and religious discrimination and to ensure improved training and awareness of cultural and faith-sensitive issues. There is a need to design and implement safeguards that allow 52

staff to report concerns around religious discrimination in a safe environment. Support structures for affected colleagues and effective policies can ensure escalation of complaints and timely and proportionate action. A greater presence of Muslim mentors and role models in leadership positions and in competitive specialities and academia would provide aspiration and inspire hope in young doctors and demonstrate NHS commitment to equality, diversity and inclusion.

Conclusions There are moral, legal, economic, health and patient safety arguments for better inclusion, representation and support for doctors from Muslim backgrounds, who despite making up a sizeable minority of the NHS workforce, are under-represented at senior levels and report experiences of discrimination, prejudice and harassment. These are consistent with trends seen internationally and in other institutions in the UK, and appear to reflect widely held negative social attitudes. Concerns reported by Muslim doctors include structural barriers – lack of representation at leadership levels, institutional policies such as Prevent and dress codes and individual experiences of career progression, negative stereotypes, exclusion and difficult team dynamics, and barriers to practising faith at work. Additionally, these concerns indicate that in the NHS multiple penalties exist against doctors who are female, BME, Muslim, international medical graduates and in junior grades. Combined, these factors produce worse layers of inequality when compared to other employment sectors. Further research and evidence-based vertical and horizontal policy approaches are needed to understand and achieve improved faith equality for Muslim doctors working in the NHS.

References

Advisory, Conciliation and Arbitration Service (2018) Religion or belief discrimination: key points for the workplace. London: ACAS. Ali S (2015) British Muslims in numbers. London: Muslim Council of Britain. All Party Parliamentary Group on British Muslims (2018) Islamophobia defined: the inquiry into a working definition of Islamophobia. London: All Party Parliamentary Group on British Muslims. Edinger-Schons LM (2019) Oneness beliefs and their effect on life satisfaction. Psychology of Religion and Spirituality [online] 11 April. Elahi F, Khan O (eds) (2017) Islamophobia: still a challenge for us all. London: Runneymede Trust. Esmail A, Roberts C (2013) Academic performance of ethnic minority candidates and discrimination in the MRCGP examinations between 2010 and 2012: analysis of data. BMJ 347, f5662. Home Office (2018) Hate crime, England and Wales 2017/18. London: Home Office. Humphrey C, Hickman S, Gulliford MC (2011) Place of medical qualification and outcomes of UK General Medical Council ‘fitness to practise’ process: cohort study. BMJ 342, d1817. Kaur-Ballagan K, Mortimore R, Gottfried G (2018). A review of survey research on Muslims in Britain. London: Ipsos Mori Social Research Institute.

●

Volume 16 Issue 2 Summer 2019

RELIGIOUS FAITH

Faith discrimination in the NHS: multiple penalties facing Muslim doctors

Malik A, Qureshi H, Abdul-Razakq H et al (2019). I decided not to go into surgery due to dress code: a cross-sectional study within the UK investigating experiences of female Muslim medical health professionals on bare below the elbows (BBE) policy and wearing headscarves (hijabs) in theatre. BMJ open 9(3) e019954. McClean D (undated) [online] Religion and discrimination in the United Kingdom. Available at: www.law.cf.ac.uk/clr/research/Oxford – United Kingdom.pdf (accessed 23 April 2019). NHS Digital (2016) Hospital and Community Health Services (HCHS) workforce statistics: equality and diversity in NHS Trusts and CCGs in England. London: NHS Digital. NHS England (2017) Improving through inclusion: Supporting staff networks for black and minority ethnic staff in the NHS. London: NHS England. NHS England (2019) The NHS Long Term Plan. Leeds: NHS England. NHS England/Improvement (2019) Interim people plan. Available at: https://improvement.nhs.uk/resources/interim-nhs-people-plan (accessed 23 April 2019).

Padela AI, Adam H, Ahmad M, Hosseinian Z, Curlin F (2016) Religious identity and workplace discrimination: A national survey of American Muslim physicians. AJOB Empirical Bioethics 7(3) 149–159. Shahid H, Abdulkareem B (2018) The triple penalty: Muslim doctors in the NHS. Muslim Doctors Association. Siddiqui A (2012) Experiences of Muslim women as healthcare professionals in Canada. [online thesis]. Available at: https://pdfs. semanticscholar.org/4152/badfcd6dcd7b1d32e92a6bdc06d1f90f3dce. pdf (accessed 23 April 2019). Stevenson J, Demack S, Stiell B et al (2017) The social mobility challenges faced by young Muslims. London: Social Mobility Commission. Tell MAMA (2017) Beyond the incident: outcomes for victims of anti-Muslim prejudice. London: Tell MAMA West M, Dawson J, Kaur M (2015). Making the difference: Diversity and inclusion in the NHS. London: The King’s Fund. Wiley E (2018). Layer after layer of inequality. London: British Medical Association.

NHS Employers (2018) Diversity and inclusion [online] Available at: www.nhsemployers.org/your-workforce/plan/diversity-and-inclusion (accessed 23 April 2019).

YouGov (2010). Exploring Islam: foundation survey results. London: YouGov.

NHS Equality and Diversity Council (2018) NHS workforce race equality standard: 2018 data analysis reports for NHS Trusts. London: NHS Equality and Diversity Council.

Younis T, Jadhav S (2019) Keeping our mouths shut: the fear and racialized self-censorship of British healthcare professionals in PREVENT training. Culture, medicine, and psychiatry 1–21.

Office for National Statistics (2011) Religion in England and Wales 2011. Available at: www.ons.gov.uk/peoplepopulationandcommunity/ culturalidentity/religion/articles/religioninenglandandwales2011/201212–11 (accessed 23 April 2019).

●

Volume 16 Issue 2 Summer 2019

Medical schools’ duty of care and the future of medicine S T U D E NT E S S AY

In March in 2017 on a skiing holiday at the age of 67 and very much in his prime George Lewith died suddenly. There was standing room only at his memorial service – a testament to his many friendships and the respect George had earned in the field of complementary medicine research where he was an international leader. In 2016 George and I had initiated a series of annual symposia with the aim of bringing together medical teachers, students and researchers for whom, in our ever faster moving and over-pressured healthcare system, the wellbeing of medical student (and doctors) has become a key issue. In George’s memory we began in 2017 to offer a medical student essay prize bearing his name and reflecting our shared concerns.

Mental health problems are more prevalent among medical students than in other student groups, and medical students are less likely than others to seek help. Doctors face increasing scrutiny, accountability and litigation, which together with the erosion of their former professional status and autonomy make for an uncomfortable professional climate. In addition, doctors are expected to evaluate ever-accumulating research

evidence, integrate novel management options into clinical practice, and to be continually appraised and re-validated as accountable, competent professionals. Consequently medical schools face very significant challenges in preparing the next generation of doctors for the uncertain times ahead and the increasingly difficult realities of practice. These winning essays consider medical schools’ duty of care.

Wassim Merzougui Final year medical student, University of Southampton

Initially, I was drawn to medicine to have a role in improving the quality of lives in the public, while incorporating my fascination of the human body. It is not only an intellectually stimulating career, but one that is humbling, where vulnerable patients place their trust in doctors to treat them holistically. I’m passionate about medical education and advocacy for both patients and healthcare professionals. During my placements while at medical school, any doubts I had to pursue medicine quickly evaporated, as I witnessed the sheer variety in patient presentations making it a challenging, but rewarding career choice.

The wishful applicant Mirror, mirror, on the wall, out of all these glossy brochures, which medical school (MS) should I go for? Looking back at my college days (but not too far back), I was at a stage that most teenagers dreaded and that was making a ‘decision’. A decision regarding which course, university and most importantly, which student current account to hide my pennies in. There are 32 medical schools recognised by the General Medical Council (GMC) in the UK, and yet there I was debating whether there were 32 cities in the UK. At this point, you might have pretty much 54

guessed that I desperately needed some career advice (preferably where there were no mirrors around me). My first bit of advice came from my first lifeline ‘phone a friend’, who advised me to base my decision on the metrics of which area offered the cheapest alcohol and simultaneously offered the most fun on a night out. I quickly drew the conclusion that some people should never offer any advice. Although, I was grateful that he considered my financial and social wellbeing. My next chosen lifeline was: ‘ask the audience’ who is also known as my father. He quickly pointed to the six hairs on my chin and stated that the decision was mine, and only mine © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

STUDENT ESSAY

Medical schools’ duty of care and the future of medicine

to make. He too has been added to my list of nonsensical advisors. With 32 medical schools out there, my last option ‘50:50’ left me in no better place. Well the harsh reality of all of this is, that when I applied, many prospective medical students did not have the luxury of choosing which MS they would like to attend. When applying to MS, the main considerations for prospective students were the grade requirements, finance and location. ‘Beggars can’t be choosers’ so what difference did it make when it came to the duty of care and benefits that the different medical schools had on offer?

Duty of care to the applicant

Before we talk about the duty of care towards medical students, I think it is of paramount importance to consider the duty of care medical schools have towards applicants. In 2016, there were nine applicants fighting for each place on offer and with such high demand comes an even higher rejection rate (Moberly, 2017). Among many of my peers at the time, no feedback was received after the dreaded ‘Unsuccessful’ update on UCAS arrived. Moreover, to add insult to injury, some medical schools had advocated to applicants not to apply again after they had been turned away. This left a few of my peers demoralised and wondering where it all had gone wrong. Surely, the applicant’s next move was to ask for feedback. However, at the time, several medical schools had highlighted that they were unable to deliver feedback due to ‘the sheer load of applications received this year’. But like Bob Dylan said, ‘Times they are a-changin’, and some medical schools are starting to offer places to study medicine through clearing (St George’s, University of London, 2016). Since the imposition of the new junior doctors contract and the media’s attention to the many struggles the NHS is facing, there is an underlying sentiment that being a doctor has lost its sparkle, and so UCAS has reported a drop in medical applications (UCAS, 2016). Medical schools have had to step up their duty of care. Looking through the different MS websites this year, it appears the application process for medical schools has been revised to ensure more support for unsuccessful candidates. Medical schools are offering applicants feedback and the opportunity to re-apply in the future.

Duty of care to the medical student So, after fulfilling all the medical school’s academic and extracurricular demands, and moonwalking your way through the application process successfully, you now become a medical student. It is time to consider what responsibility and duty of care your MS has towards you. The most obvious duty a school should offer before graduation, is a comprehensive education in line with the GMC’s outcomes and standards of Tomorrow’s Doctors (GMC, 2009). The anticipated outcome is to not only become a doctor, but an accomplished scientist, scholar, practitioner, and a competent professional.

●

Volume 16 Issue 2 Summer 2019

Flexibility Like Dr Ole Ivar Lovaas said, ‘If they can’t learn the way we teach, we teach the way they learn’. So it is the responsibility of an MS to provide a high standard of teaching, delivered by experts in the subject, employing teaching strategies that vary to cater to students with specific learning methods or to support students with special needs. It is imperative that cancelled lectures/ tutorials are rescheduled or uploaded to ensure there are no gaps in the students’ knowledge.

Consistency

Going through GMC recommendations for the different medical schools during the year 2016/17, it became apparent that several faculties have issues with their Objective Structured Clinical Examination (OSCE) assessment. Among medical students, it became apparent that the OSCE assessment process varies at different placements. There have been issues with OSCE standardisation in medical faculties (GMC, 2017). The faculty has a duty to ensure that all assessors who participate in the assessment process are well equipped with the guidance and training for assessing our future doctors with consistency. Medical students should not feel apprehensive, but reassured they are going to be assessed fairly at any placement.

Usefulness

Most medical students spend their time in various hospital placements and general practices. It is essential that organised placements are safe and that the student receives adequate supervision. There should be clear communication between the faculty and placement regarding the student’s attendance and learning outcomes. Under the guidance of the MS, each placement should provide teaching to develop the student’s clinical knowledge and the opportunity to hone their clinical skills, beyond just pulling curtains and making cups of tea.

Safety and comfort

Living like a vagabond is all part of the university experience. However, the BMA has provided guidance regarding the minimum standards of accommodation (BMA, 2018). It outlines with respect to safety and security, that medical schools should provide adequate accommodation to students undertaking their clinical placement far from their university.

Breadth

To become a well-rounded doctor, medical schools should support students in participating in extracurricular activities, eg attending conferences, performing sport and academic research. The GMC stresses the importance of work-life balance in Tomorrow’s Doctors (2009) [replaced by Promoting Excellence: standards for medical education and training, 2015] and highlights that 55

STUDENT ESSAY

Medical schools’ duty of care and the future of medicine

medical schools should endeavour to protect recreational time.

Diversity

Medical schools have a duty to support students with disabilities in both applying to MS and during their time in learning to become a doctor. It is a legal requirement that medical schools provide reasonable adjustments to students with a disability that could impact their career. This is highlighted in the GMC ‘Gateways guidance’, which emphasises the various ways medical schools should support students with a disability. Medical schools should facilitate a straightforward application process for students with a disability. We are taught to show empathy towards our patients, but what empathy is shown when we become one?

Wellbeing

Mental health is considered to be a taboo subject in medicine, however according to the student BMJ, over 30% of medical students experience mental health problems, with 80% of them struggling to receive adequate support (Billingsley, 2015). An MS may advertise its mental health services, but many students are reluctant to approach these services, for fear that it will have a negative impact on their future career, that their medical notes will be disclosed or their fitness to practice will be questioned. However, it is important to highlight that the GMC has stated that ‘In almost every case, a mental health condition does not prevent a student from completing his or her course and continuing a career in medicine. If you engage with your medical school and ask for support and follow the advice given, then there will be no need for a fitness to practise committee to be involved’ (Sayburn, 2015). A student BMJ article had described a medical student’s experience on her mental health condition during MS. She had described ‘how there is not always a clear demarcation between MS staff with pastoral roles and those who rule on fitness to practice or disciplinary issues’. This is contrary to GMC guidance, which is clear on the need to separate these two functions. ‘It is important that those providing pastoral support are not in a position to make decisions on academic progression. This separation of function allows students to have a safe environment in which they can raise concerns without worrying that there will be any impact on their academic progression’.

Openness

Medical schools should create an environment where mental health is openly discussed to reduce the stigma around it. It is imperative to explain to students on their induction day, that mental health conditions are very common and that there are services available to support them. They should ensure that they maintain clear confidentiality guidelines with regards to students and their mental health issues. In the same way universities 56

accommodate medical students with physical disabilities, the same should be done for those with mental health issues. For example, a medical student with anxiety had explained how her university had offered her the opportunity to sit an exam in a room with fewer people. ‘That really took the anxiety away from me’ (Sayburn, 2015). A small adaptation, AKA good deed, by the university can go a long way. Just as we give our patients fit notes with a phased return, we should also offer the same to medical students. Some students would prefer their workload to be reduced for a short period of time rather than having taking a year out of training.

The future

So, what lies ahead for the future of medical schools and medical education? For those applying to MS, it could be good news. Jeremy Hunt announced that an extra 1,500 MS places will made available to help tackle the ‘workforce crisis’ that the NHS is facing (McManus, 2016). The recent opening of private medical schools has also been a hot topic of discussion. Private medical schools can accommodate the intake of more students, which in future could support the NHS workforce. It could also encourage competition between medical schools to provide the best care and quality of medical education to prospective students. It is important to note that here have been some concerns raised regarding private medical schools. Students applying will effectively be paying for their place to attend MS. Since the student is paying outright, does this mean private medical schools have an even greater duty of care to these students, for fear that they might take their business elsewhere? Private medical schools are also business ventures seeking to make a profit. However, could the profit motive have a negative impact on the quality of training medical students receive? With an increase in student intake, there could be a lack of placements available to provide teaching in a clinical setting. Are the pressures that the NHS faces the result of increases in medical admissions, or could it be that the lack of retention of doctors is an underlying cause? It is with great sadness, that my time as a medical student is drawing to an end. Thankfully, I have more than six hairs on my chin, although some of these hairs have become grey. With more grey hair, comes more wisdom. My experience as a medical student has been fruitful to say the least. I cannot stress the importance of medical schools supporting my peers during their adversities. My peers are resilient, brilliant, but also human. The care that we receive from our medical school translates to the care that our future patients receive. So please be kind to us, for the sake of our future patients!

References

Billingsley M (2015) More than 80% of medical students with mental health issues feel under-supported, says Student BMJ survey. Student BMJ, 23 [online]. [Internet]. Available at: https://search.proquest.com/ openview/eadd231e88365d67b2f6059650336297/1?pq-origsite= gscholar&cbl=2041875 (accessed 5 June 2019).

●

Volume 16 Issue 2 Summer 2019

STUDENT ESSAY

Medical schools’ duty of care and the future of medicine

BMA (2018) Minimum standards of accommodation [online]. Available at: www.bma.org.uk/advice/career/studying-medicine/getready-for-clinical-medicine/minimum-standards-of-accomodation (accessed 5 June 2019). GMC (2017) Medical school reports [online]. Available from: www.gmc-uk.org/education/26867.asp (accessed 5 June 2019). GMC (2009) Tomorrow’s doctors. [online]. Available at: www.ub.edu/medicina_unitateducaciomedica/documentos/Tomorrows Doctors_2009.pdf (accessed 5 June 2019). Lovaas Ole Ivar (1993) In: Hart C. A parent’s guide to autism. New York, NY: Simon and Schuster; pp 260. McManus C (2016) Hunt promises 25% more medical students in 2018. BMJ, 355:i5480.

Moberly T (2017) Sixty seconds on … medical school applications. BMJ, 8, 356: j659. St George’s, University of London website. St George’s, University of London offers Medicine through clearing for the first time [online]. Available at: www.sgul.ac.uk/news/news-archive/medicine-clearing-firsttime (accessed 5 June 2019). Sayburn A (2015) Why medical students’ mental health is a taboo subject. Student BMJ, 23 :h722 UCAS (2015) 2016 cycle applicant figures – October deadline [online]. Available at: hwww.ucas.com/corporate/news-and-key-documents/news/2016-cycle-applicant-figures-%E2%80%93-october-deadline (accessed 5 June 2019).

Saleh Jawad Final year medical student, University of Southampton

I wanted to become a doctor for very selfish reasons. I enjoyed helping people, I enjoyed the intellectual challenge of medicine but also the complexities of interacting with people at their most vulnerable. My time at medical school, however, showed me that not only were the patients vulnerable but also the staff. Doctors, nurses, healthcare assistants, medical students and more, all suffered a burden on their journey to helping people. I wondered why.

I have been taught that honesty and transparency are important cornerstones of medical care. In that spirit, let me be honest. When I sat down to write my personal statement some five years ago, my understanding of what it meant to be a doctor, the vocation as I put it, was naively untried. Saving lives and helping the sick was the dream, and soon it will hopefully become a realisation. What I was not aware of was the toll that fulfilling the dream can take on an individual. Howe et al (2012) explain that doctors are at risk of suffering ‘moral injury’. They explain that moral injury is the emotional and psychological damage that individuals suffer when they continually experience or take part in acts that go against ordinary moral expectations, much like in the military world. The situations that doctors often find themselves in come with their own moral demands and codes that may run contrary to the norms and expectations of society. These situations can be as simple as causing pain to a child in the process of treatment or in a more extreme situation, amputation of a limb to combat disease. It has been suggested that doctors themselves may, in the act of treating a patient, have to refrain from ‘normal’ feelings and morals to provide the best quality of care (Smajdor et al, 2011). Additionally I learned that medical students experience higher levels of stress and depression compared to their non-medical counterparts and the general population (Dahlin et al, 2005). Interestingly, one study suggested that as medical training progresses the prevalence of depression increases (Quince et al, 2012; Dyrbye and Shanafelt, 2016). It has been shown that stress induced by medical training has more of an impact on students’ depression than any other personal stressor (O’Reilly et al, 2014).

●

Volume 16 Issue 2 Summer 2019

The duties of a medical school These can be spilt into two categories. The first being the duty to provide society with competent doctors. The second is the duty to its students, not only to train them but also to prepare them for the realities of their vocation. If the military must provide its soldiers with bullet-proof vests, and place them in armour-clad vehicles, we must ensure medical schools are equipping future doctors for the battlefield of medicine. Although these duties can be debated and explored, ‘duty of care’ is a legal concept and I have very little experience in the legal field. On many occasions, however, at medical education conferences my generation have been described as internet- and digitallyobsessed. I know that from my use of the internet in writing this essay, I have yet to find a document that clearly outlines the responsibilities a medical school has to its students. The GMC sets out recommendations and standards that aim to support students in their learning but falls short of using the term duty of care (GMC, 2017). However, it is very easy to find multiple websites and documents that clearly outline the duty of care that doctors must offer to their patients. The duty of care that medical student’s will be legally required to deliver to their patients is made clear on the very first day of medical school. What is also made clear is that ‘no one will hold your hand and unlike your previous schooling, knowledge will not be spoon fed’. It is this culture that I am increasingly questioning, for though I concede that doctors must learn to be independent and lifelong learners, yet I question the culture of isolation and the feeling that I am personally held to a standard that my parent organisation is not. What cannot be debated is that we have a problem. The problem is clear but the solution less so. In the sad aftermath of 28 doctors committing suicide while under 57

STUDENT ESSAY

Medical schools’ duty of care and the future of medicine

investigation, the GMC released a report with nine recommendations (Horsfall, 2014). One of the nine recommendations made was ‘to make emotional resilience training an integral part of the medical curriculum’. The report stated that ‘it would be helpful to ensure that there is sufficient resilience training or information on how to emotionally handle the transition from student to junior doctor’. The GMC’s guidance to students also stated that ‘you will need to learn early on how to develop emotional resilience’ (GMC, 2016).

The concept of resilience is not new However, in recent years I have come across it more and more in my life, medical and otherwise. The difficulty of defining resilience is widely recognised, so the proposed solution of resilience training may seem premature. There is no universally accepted way of measuring or quantifying resilience and this to could cause difficulties for medical schools, especially when trying to implement resilience programs that are individual directed. Thus If we would imagine a medical student metaphorically drowning because stress, depression, and anxiety were pulling them down. The medical school suggests that the student should attempt to swim frontstroke or backstroke, or perhaps some version of what dogs do. These different swimming styles represent the individual directed interventions found in the literature such as mindfulness based stress reduction, yoga, and stress reduction programmes. Such suggestions might be helpful but in my experience so far, exhortations to boost resilience seem to generate anger with some junior doctors and students if they feel it implies a lack of resilience and this becomes another stick to beat them with when things go wrong. We need to think about resilience in terms of not just of what individual can do to support themselves, but crucially, we must also consider how the system itself must support individuals. The future of medicine in the UK, depends on the ability of the NHS to retain doctors. This in turn will rely on medical schools’ ability to train resilient doctors who can adapt in healthy ways to the challenges of delivering medical care. In April 2017 a report looking at the longerterm sustainability of the NHS stated, ‘Our NHS, our “national religion”, is in crisis and the adult social care system is on the brink of collapse’ (The Lancet, 2017). Organisational changes must occur. A sustainable NHS cannot rely solely on ever-more resilient doctors. The repeated reorganisation of the NHS has created anxiety and the creation of scapegoats and destructive relationships, where the weakest suffer the most (Balme et al, 2015). Other less than ideal organisational factors include antisocial hours, staff shortages and poor leadership. They all play a part in preventing the organisation and the individuals within the organisation from delivering safe, effective, and compassionate care (Slavin et al, 2014). Since the problems faced by the NHS and by doctors and medical students are interwoven, and contribute to their overall complexity, should we question whether individual resilience is still a credible solution? 58

Organisational resilience Resilience may be a personal trait that medical students can be taught to enhance. However, organisational resilience aims to improve the working environment, which may have negative effects experienced by student during their training. Organisational resilience takes a holistic approach, looking at both the individual and the organisation. In regard to medical education, organisational resilience allows us to critically examine the way we teach students and the environment we teach them in. Slavin et al (2014) show that through their organisationdirected resilience intervention, they were able to address directly the sources of medical student distress within the curriculum. By changing grading systems, reducing contact hours and institutionalising longitudinal electives among other changes, they were able to see a significant decrease in stress, depression and anxiety. These organisational changes were also supplemented with opportunities (individual directed interventions) for students to develop resilience skills to better cope with stressors. An organisational approach will not just teach students how to swim but will also ensure that the swimming pool is not deep enough to drown in to begin with. It has been suggested that it will be by creating posts and career structures, by working together to improve job satisfaction and by addressing the current bullying culture of shame and blame that staff resilience will be achieved. ‘If we are to create a resilient environment for healthcare staff, there will need to be structural changes from ward to board’ (Balme et al, 2015).

A change in paradigm? My colleagues and I are the future of medicine, but I question what we will inherit. For, if we are honest, there are many dysfunctional aspects that need to change. What we have before us is an opportunity to shift the paradigm, instead of accepting whatever is thrown at us. Rather than offering resilience seminars and elective courses to mitigate medical student distress, we need to feel empowered to push for changes that address the sources directly. The problem is grave, and the challenges great, but implementing organisational resilience can be effective. Resilience may be poorly defined but this should invite us to develop definitions that include the solutions needed tackling the current and future difficulties that medicine will face.

References

Balme E, Gerada C, Page L (2015) BMJ Careers – doctors need to be supported, not trained in resilience [online]. Available at: http://careers.bmj.com/careers/advice/Doctors_need_to_be_supported, _not_trained_in_resilience (accessed 5 June 2019). Dahlin M, Joneborg N, Runeson B (2005) Stress and depression among medical students: a cross-sectional study. Medical Education, 39(6) 594–604. Dyrbye L, Shanafelt T (2016)A narrative review on burnout experienced by medical students and residents. Medical Education, 50(1) 132–49.

●

Volume 16 Issue 2 Summer 2019

STUDENT ESSAY

Medical schools’ duty of care and the future of medicine

GMC (2017) Promoting excellence: standards for medical education and training [online]. Available at www.gmc-uk.org/education/ standards.asp (accessed 5 June 2019). GMC (2016). Welcome to medicine 2016 [online]. Available at: www.gmc-uk.org/Welcome_to_medicine_2016_0816.pdf_67466733.pdf (accessed 5 December 2017). Horsfall S (2014) Doctors who commit suicide while under GMC fitness to practise investigation. Available at: www.gmcuk.org/Internal_review_into_suicide_in_FTP_processes.pdf_59088696. pdf (accessed 5 June 2019). Howe A, Smajdor A, Stockl A (2012) Towards an understanding of resilience and its relevance to medical training. Medical Education, 46(4) 349–56.

O’Reilly E, McNeill KG, Mavor KI, et al (2014) Looking beyond personal stressors: an examination of how academic stressors contribute to depression in Australian graduate medical students. Teaching and Learning in Medicine, 26(1),56–63. Quince TA, Wood DF, Parker RA, et al (2012) Prevalence and persistence of depression among undergraduate medical students: a longitudinal study at one UK medical school. BMJ Open, 2(4) 8. Slavin SJ, Schindler DL, Chibnall JT (2014) Medical student mental health 3.0: Improving student wellness through curricular changes. Academic Medicine, 89(4) 573–77. Smajdor A, Stockl A, Salter C (2011) The limits of empathy: problems in medical education and practice. Journal of Medical Ethics, 37(6) 380–83. The Lancet (2017) The future of the NHS. Editorial The Lancet. [Online] 389(10078)1491. Available at: www.thelancet.com/journals/ lancet/article/PIIS0140-6736(17)30994-7/fulltext (accessed 5 June 2019).

Hope is the thing with feathers Emily Dickinson, 1862 Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all, And sweetest in the gale is heard; And sore must be the storm That could abash the little bird That kept so many warm. I’ve heard it in the chillest land, And on the strangest sea; Yet, never, in extremity, It asked a crumb of me.

doctors’ retreats The bottom line: practitioners who cannot care for their own bodies and feelings will be much less able to care for others. The medical and nursing professions are at higher risk of poor mental health and burnout and we want to help healthcare workers understand the origins of health and find time to attend to their own wellbeing and build resilience. Our new GP retreat programme brings you a suite of workshops and courses to promote wellbeing and provide personal and professional development opportunities for busy GPs. Our ambition is for this programme to extend to other healthcare practitioners as it grows. If you run a retreat and would like to co-deliver this with the BHMA, please get in touch.

Next retreat: Yoga and mindfulness retreat for doctors September 27–29, Suffolk Keep up-to-date at https://bhma.org/item/doctor-retreats

●

Volume 16 Issue 2 Summer 2019

Love in the consulting room

William House

Retired GP; Chair of the BHMA

Over my 30 years as a general practitioner I grew to love my patients. It made no difference how easy or difficult they were, the feeling of loving attachment felt on another plane – a sort of nourishment. It is only since retiring 10 years ago that I have had the mind-space to muse about this. Medical literature has little (perhaps nothing) to say about love! So what I learned about this sort of bond that I am calling ‘love’ came purely from my conversations with the patients. This sort of knowledge is hard to explain. However, since finishing as a GP, I have read many books and my eyes have been opened. The most useful book has been Iain McGilChrist’s profound and learned work, The Master and his Emissary (2010). It is long and hard work to read, but fascinating and worth the effort. He writes in the acknowledgements that the book’s gestation and birth took 20 years and I’m not surprised by that. So I will use mostly my learning from this book to give you a brief glimpse of my experience of love in the GP consulting room. Actually, McGilChrist hardly mentions love and there is no entry for it in the index (likewise faith and hope). Instead, his recurring theme is the nature of relationship, and he exemplifies this through an in-depth and wide-ranging examination of the relationship between the two hemispheres of the human brain. He goes on to show how this has moulded human culture. The radical differences between the two halves of the human brain have been intensively researched and widely recorded. McGilChrist’s thesis is contested, but I find it powerfully evocative of my own experience over many years. So here goes! McGilChrist’s title for this book signifies a caricature of the hemispheres’ differing ‘personalities’. For McGilChrist, the master is the right side of the brain and the emissary is the left. They differ profoundly. Here McGilChrist uses the quality of attention to characterise one important aspect of this difference: … the right hemisphere pays attention to the Other, whatever exists apart from ourselves, with which it sees itself in profound relation. It is deeply attracted to, and given life by, the relationship, the betweenness, that exists with this Other. By contrast, the left hemisphere pays attention to the virtual world that it has created, which is self-consistent, but self-contained, ultimately disconnected from the Other, making it powerful, but ultimately only able to operate on and know itself. p93 60

So the right hemisphere looks outwards and the left looks inwards. In the context of the GP’s surgery, the doctor’s right hemisphere will be primarily interested in the patient as person and crucially, the ‘betweenness’, that exists in the room: an emphasis on relationship. Meanwhile, the doctor’s left hemisphere may be thinking in a rational way about diagnosis, about what a blood test or x-ray may show, or what medication might help. The patient easily becomes a container for these medical speculations within the doctor’s mind. I last practised medicine 10 years ago, but I gather that there is ever more pressure towards the left brain mode – measurements, tests, relentless categorisation and strict protocols. These are likely to define the relationship in quite a different way to the right hemisphere’s ‘betweenness’. This long-term drift to the left is coupled with the perception of medicine as a hard science and as a driver of the economy. For the individual doctor, seeking this illusive certainty in an uncertain and punitive world is damaging to morale. Few come out of this well. So how can we bring the loving back? Beauty lies in the coming to rest of opposites, that have been sharply distinguished, in the connectedness of a harmonious unity. p200 The quotation above neatly contains three elements of a productive, lively and loving human relationship. First the ‘opposites’. Nature thrives on the energy and variety that emerges when ‘sharply distinguished opposites’ are in relationship. In many ways this defines the world as we know it, not least, the two hemispheres of the human brain, perhaps the towering achievement of biological evolution. Then comes ‘connectedness’: up to this point, I have already used the word, ‘relationship’, eight times. The human need for connection is one of our strongest instinctual drives. It is essential to health, and so also, to the practice of medicine. The particular connection we call ‘dialectical’, meaning ‘concerned with or acting through opposing forces’ is maybe the one most likely to generate harmony. This is an energised, exciting harmony that composers, playwrights and comedians use to such great effect. So perhaps it is this that gave me my love of the patients, and sustains me now in my attempts to understand it. McGilChrist I (2010) The Master and his Emissary. New Haven, CT: Yale University Press.

●

Volume 16 Issue 2 Summer 2019

Research summaries Thanks to James Hawkins http://goodmedicine.org.uk/goodknowledge

Empathy and the mirror system

Seeing another person in pain can trigger activity in the observer’s own pain cortex. Do these shared neural representations actually reflect empathic neural mirroring, and if so do they correlate with a person’s altruism? This study involving 25 individuals who had performed costly altruism (donating a kidney to a stranger) showed that they exhibited more of this self–other neural overlap than 27 matched control participants when witnnessing pain and threat. Results show that heightened neural mirroring of empathy corresponded to real-world altruism. Brethel-Haurwitz KM et al (2018) Extraordinary altruists exhibit enhanced self–other overlap in neural responses to distress. Psychological Science 29(10):1631–1641.

Secular mindfulness

Secular mindfulness meditation cultivates focused, non-judgemental awareness of the present moment. Study one found that employees who had been randomly assigned to engage in a focused breathing meditation were more willing to donate to a co-worker in financial distress. In study two US insurance company employees who were randomly assigned to a five-day brief mindfulness training reported more helping behaviours. Study three examined the effects of two different mindfulness techniques – focused breathing and loving kindness meditations. The results found strong support for empathy and moderate support for perspective-taking as mediators of the relationship between mindfulness and prosocial behaviour. Hafenbrack AL et al (2018) Helping people by being in the present: Mindfulness increases prosocial behavior. Academy of Management Journal 2018 (1):12684.

The varieties of love-experience

Is there a shared understanding about when one is most likely to feel loved, and on what gets in the way? In terms of personality, participants higher in trait agreeableness were more in tune with the collective views on felt love, which seems intuitive, but so too were participants higher in neuroticism (ie with low emotional stability, who are known to go through more relationship difficulties on average), which is harder to explain. Perhaps individuals high in neuroticism still experience love, they simply do not have lasting love experiences. The researchers said the main take-away from the research is that ‘people feel loved in a range of settings much wider than just romantic relationships …’, and ‘although knowledge of love can differ between people, there is a consensus within the US culture about which scenarios elicit love in most people’. Heshmati S et al (2019) What does it mean to feel loved: Cultural consensus and individual differences in felt love. Journal of Social and Personal Relationships 36(1): 214–243.

●

Volume 16 Issue 2 Summer 2019

Self-compassion, mental health and wellbeing

Why are self-compassion and its cultivation associated with improved mental health and well-being? This study looked at the effect of two short-term self-compassion exercises on self-reported-state mood and psychophysiological responses compared to three control conditions of negative (rumination), neutral, and positive (excitement). Only the self-compassion exercises triggered reduced psychophysiological arousal (reduced heart rate and skin conductance) and increased parasympathetic activation (increased heart rate variability). This is a pattern associated with effective emotion regulation in times of adversity. As had been expected rumination triggered the opposite pattern across self-report and physiological responses. These findings are partial evidence that the reduction in bodily arousal and increased parasympathetic activation actually precede the mental experience of feeling safe and connected. Kirschner H et al (2019) Soothing your heart and feeling connected: A new experimental paradigm to study the benefits of selfcompassion. Clinical Psychological Science 7(3): 545–565.

Giving keeps on giving

People adapt to repeated getting: the happiness we feel from identical sources of happiness decreases as we keep repeating them. But do people also adapt to repeated giving – the happiness we feel from helping other people rather than ourselves? When participants spent a windfall of $5 a day on the same item for themselves or another person (the same one each day) happiness significantly declined: similarly for participants who won small sums of money for themselves in 10 rounds of a game. However, there was no decline in happiness among those who spent their windfall on someone else, or who donated their winnings to a charity of their choice. The happiness we get from giving appears to sustain itself. O’Brien E, Kassirer S (2019) People are slow to adapt to the warm glow of giving. Psychological Science 30(2): 193–204.

Measuring joy

This research looks at joy and its relationship to subjective wellbeing (SWB) and has developed reliable measures of state and trait joy. The studies found not only that dispositional gratitude predicted increases in state joy over time, but also that trait joy predicted increases in state gratitude, providing evidence for an intriguing upward spiral between joy and gratitude. Trait joy was associated with increases in SWB over time. The conclusion is that joy is a discrete positive emotion that can be measured reliably with self-report instruments, and that it may be an important component of well-being.

Watkins PC et al (2018) Joy is a distinct positive emotion: Assessment of joy and relationship to gratitude and well-being. The Journal of Positive Psychology 13(5): 522–539.

Reviews Learning to die: wisdom in the age of climate crisis

Robert Bringhurst and Jan Zwicky University of Regina Press, 2018 ISBN 978-0889775633

I am not sure how I came across this book; I think I followed a link on Twitter. It appealed to me immediately and I ordered it from Mr Bs, our Bath independent bookshop, then promptly forgot all about it. When I learned it had arrived, I asked my wife to pick it up for me while she was in town. ‘What’s it called?’ she asked, and I couldn’t remember. She brought back this tiny book with a shocking cover and title. I opened it and was immediately engaged. It may be tiny, but it explores a huge theme: How should we die at the end of times? Or as Margaret Atwood puts it, ‘Truth-filled meditations about grace in the face of mortality’. Robert Bringhurst and Jan Zwicky are Canadian scholars of international repute: he a typographer, poet, and translator; she, a philosopher and poet. Learning to Die is beautifully designed, typeset and bound. It feels quite apt to study almost unthinkable topics through a beautiful physical object. The book contains two short essays and an afterword that critiques Stephen Pinker’s Enlightenment Now. The first essay, by Bringhurst, The Mind of the Wild, sets out our predicament, that we are at the end of times. He considers the nature of the wild Earth, ‘living life to its full… self-directed, self-sustaining, self-repairing, with no need for anything from us’. Humans are, of course, part of this, but, in a telling phrase, he describes us as ‘liminal creatures’, on the margins of the wild, sometimes tempted to believe the ‘witch tale’ that we can live entirely outside it. The wild world is extraordinary resilient, and yet it has been pushed by humans beyond its limits: ‘Does anybody honestly suppose that nature can be tricked into giving more and yet more every year, without end?’ The dominant human culture is increasingly toxic to the wild, bringing about mass extinction of life on Earth, the sixth such great extinction. If anything survives, ‘it will again be the wild… that is responsible for the healing’. This extinction includes humans. ‘Cultures change. And ours will soon be changing big-time… If there are any human survivors of the next mass extinction, the cultural slate will be wiped pretty clean. No one may have heard of Shakespeare or Bach, Picasso or Plato’. Life will not go on forever, but somehow, we are making it shorter by far than we need to. Bringhurst is demanding we look reality in the face, challenging us with the realities of death: ‘You, your species, your entire evolutionary family, and your planet will die tomorrow. How do you want to spend today?’ We are up against a wall; more and more of those who care are standing against the unsustainable mainstream. We may not be able to save the world, ‘but you might just manage to save your self-respect.’

Jan Zwicky picks up this essentially moral question. The title of her essay, A Ship from Delos, refers to the death of Socrates. Because executions are proscribed during the annual embassy to Apollo at Delos, his is delayed; but when the ship returns, his death is inevitable. ‘Humans collectively are now in Socrates’ position: the ship with the black sails has been sighted. Catastrophic global collapse is now on the horizon… nothing remotely like adequate measures are being undertaken… when we go, we are going to take a lot of innocent beings with us.’ Zwicky’s essay explores the question, ‘What constitutes virtue in such circumstances?’ The answer, she tells us, is surprisingly straightforward: ‘what has constituted virtue all along. We should approach the coming cataclysm as we ought to have approached life’. She translates ‘virtue’ as ‘excellence’: it’s about being an excellent human being. The excellence she pursues is based on the ‘suite of virtues that Socrates cultivated… and… embodied clearly on the day he learned he was going to die’, arguing that ‘these virtues are a good starting place since they are the foundation of moral thought of the industrial culture that is the root of the crisis’. From Plato’s account, Zwicky derives a list of core Socratic virtues: • Awareness coupled with humility regarding what one knows • Courage • Self-control • Justice • Contemplative practice • Compassion

So much of the discussion about the ecological catastrophe is couched in practical terms, about carbon reduction, alternative economic models, politics and human rights, species conservation. Rarely do we go to the moral and ethical heart of the matter, usually staying at a level of guilt-inducing should/should not injunctions. Zwicky’s essay fills an important gap. So how might we practise these virtues ‘in the face of sighting our own ecological ship from Delos?’ Awareness is about ‘knowing what’s what’, about looking the truth in the eye, acknowledging what is the case. This is a significant challenge; for it is often argued that to be aware that death is imminent is to extinguish hope. Zwicky explores these issues carefully, not allowing easy answers. Hope is not destroyed. Beauty remains. The human inventive spirit remains. The Earth is prodigious, life will proliferate again. And awareness must be coupled with humility: we do not know what the future will hold. On the other hand, denying responsibility, denial of our complicity is part of refusing to know what’s what. Zwicky challenges us: those of us who have enough to eat and freedom to think must see clearly what our situation is: ‘Its desperate character, its blinding pain, must become an integral part of what we know.’ This will take courage. It will take physical courage to stand up to the inevitable pain and duress; it will take civic courage to live with wars and violence; it will take moral courage to exercise the virtue of awareness with humility. It demands. Selfcontrol seems to be something the dominant culture lacks: not just ‘grim, Procrustean self-denial’, but knowing when enough is enough, embracing simplicity. And it will require compassion, particularly so we do not indulge in contempt for those struggling to come to awareness, who deny ‘what’s what’. The virtue of justice is more complex. Zwicky compares the Platonic notion of justice as the ‘order of the soul’ with the modern view articulated by philosopher John Rawls that it is about fairness. There is a complex argument here, which includes the question: since we cannot remedy the situation we © Journal of holistic healthcare

●

Volume 16 Issue 2 Summer 2019

REVIEWS

are in, why bother with justice at all? Here it seems that Plato’s view of justice has real bite: the order of the soul is about inner harmony, the self-sustaining interdependence of awareness, humility, courage, and self-control, maybe better called ‘nobility’. What is good is beautiful. Zwicky contends: ‘the older I get, the more it looks like Plato was onto something: there are people in all walks of life who… are seized by the need to do the right thing… [W]hen you are in the presence of someone who is acting from direct perception of the good, you can tell.’ Contemplative practice of any sort involves attention. ‘We attend to the real, physical world, its immense and intricate workings, subtlety; its power, its harshness and its enormous beauty. We attend to the miracle of it, that there is something – this, here, now – rather than nothing. We attend to the rhythms of this world as they play out in our lives…’ Contemplation allows us to see the beauty of brokenness. ‘The more we attend to the world, the less we find ourselves wishing to control it.’ In place of control, we may desire to become, as Aldo Leopold puts it, a ‘plain member and citizen’ of the land community. These virtues form an organic whole; they concern ‘excellent human being – here, now, in this world. There is little point asking how to live or how to die if we won’t, or can’t, act on the answer.’ This means that knowledge, if it is to be morally excellent, must be taken into the heart as well as into the mind. Or, to put this another way, that for virtues to be virtues they must be practised in concert. ‘So how are we to die?’ asks Zwicky. In the end, this must also include a sense of humour: ‘a Socratic sense of humour will be manifest not as slapstick and belly laughs, but as the lightness of touch that comes from not taking one’s self too seriously. We will sense it as a smile: the absence of fear and the refusal to despair. Even in the face of death.’ I started this review with an account of how I stumbled on this book by chance. It has utterly engaged me, and several of the people with whom I have discussed it, for several days. I find that it cuts through the unending, superficial debates of our time. It asks us to take our life seriously, to consider, how will you live? And leads us through ways of considering the question. I find this invaluable. Peter Reason, writer

This review was first published by Shiny New Books https://shinynewbooks.co.uk

Admissions. A Life in Brain Surgery

Henry Marsh Weidenfeld & Nicolson (2018) ISBN 978 1 474 60589 2

How much can autobiographical reflections help us face our larger shared problems of humanity? This essayed review explores Admissions, a very personal and long-term view of healthcare. Henry Marsh, a veteran and pioneering neurosurgeon, has recently published two books since his retirement from the NHS. Both have received excellent reviews from major media critics and have rapidly become best sellers. It is easy to see why: Marsh writes vividly of his exacting and edge-of-life work with humanity, philosophy and compassionate humour. His

●

Volume 16 Issue 2 Summer 2019

strong opinions are buttressed by sharp observation and deep thought. He writes self-knowingly as an emotional man striving for the detachment that is necessary both to make sense and to save himself. Often he alternates dilemmas from his work with those from his life – switching from the operating theatre or intensive care unit to his struggle restoring a derelict ancient cottage, for example. Marsh never uses the word ‘holistic’ but his descriptions and thinking are enriched by their many levels and aspects of engagement. He seems a sensitive man doing extremely demanding and dangerous work, and I suspect that his sometimes bluff manner might impatiently avoid such a term; ‘holism’ is so often lost to vagueness. This second volume, Admissions, is rather less technical and more human than the preceding Do No Harm, focusing less on the neurosurgery and more on his experiences and thoughts of caring for others, and then on his spectered fear of personal decline when he is no longer able to do this. These are Admissions’ main themes and Marsh introduces his own writing with three quotes from long-deceased thinkers. The quotes are repeated here as a useful way to introduce Marsh’s two main themes. His own exceptional clarity merits extensive quotation. Medicine is a science of uncertainty, and an art of probability… Sir William Osler

Marsh’s thinking about how we construct and instruct knowledge, and then how we may best live creatively with uncertainty, is wise, pragmatic and humble. His long experience has led him to a very different view from the current trend of risk-phobic professional micromanagement. Doctors are now subject to a regulatory bureaucracy that simply did not exist forty years ago and which shows little understanding of medical practice. The National Health Service in England … is chronically starved of funds, since the government does not admit to the electorate that they will need to pay more if they want first-class health care.

He sees our increasingly stringent methods of governance as departing far from important realities:

Many of our medical decisions – whether to treat, how much to investigate – are not clear-cut. We deal in probabilities, not certainties. Patients are not consumers who, by definition, always know what is best for themselves, and instead must usually accept their doctors’ advice. Clinical decision making is easily distorted by financial gain for the doctor or hospital … Increasing litigation drives over-investigation and over-treatment – so-called defensive medicine …

… but doctors deal with probabilities, not certainties. Sometimes, if you are able to make the right decision, you have to admit that you might be wrong …

All good sense, surely? But what Marsh found, increasingly, was management whose systems eliminated such sense:

The feeling that there was something special about being a doctor had disappeared – it was just another job, I was just a member of a team, many of whose members I did not even know. I had less and less authority. I felt less and less trusted. I had to spend more and more time at meetings stipulated by the latest government edicts that I felt were of little benefit to patients … We would often look at brain scans and decide whether the patient should be treated or not without any of us having ever seen the patient.

REVIEWS

These depersonalising reforms meant that:

… we lost a lot – above all the friendly working relationships that can come when you work in a small organisation where everybody knows each other on a personal level and work together on the basis of personal obligation and friendship …

Marsh has clearly given much thought to how empathic humanity might creatively co-exist with high-risk high-technology: The moral challenge is to treat patients as we would wish to be treated ourselves, to counterbalance with professional care and kindness the emotional detachment we require to get the work done. The problem is to find the correct balance between compassion and detachment. It is not easy. When faced with an unending queue of patients, so often with problems that we cannot help, it is remarkably difficult.

But Marsh found diminishing scope in the evolving NHS to seriously consider such seminal issues:

So instead … a small fortune is spent on management consultants who subscribe to the ideology that marketisation, computers and the profit motive will somehow solve the problem. The talk is all of greater efficiency, reconfiguring, outsourcing and better management…

These are not mere abstractions. Marsh offers us many vignettes illustrating the frustrating absurdity and craven pathos of a system groaning under its top-heavy and rigid regulation. Partly for respite – to re-own and reaffirm his professional skills and identity – he travelled: to the USA for academic exchange, and to the much poorer and medically primitive Ukraine and Nepal to offer his expertise as a charitable project. In each of these places he saw, and worked in, very different ‘systems’ (if you can call impoverished chaos a system) to the NHS. Both richest and poorest nations had severe problems, mercifully (if relatively) lacking in our NHS. His vivid descriptions of care amid corruption and severe poverty have a starkness that is shocking and heart-breaking. He has quite as much, though different, dismissive mistrust of a consumerist-capitalist system. After a reluctant visit to a skyscrapered, plush medico-legal claims office he wrote: I had to wait for a while, and looked with sour awe at the City under a clear blue sky. Babylon! I thought – the heart of an extravagant culture, consuming itself and the planet, sheathed in glittering glass…

For all his personal frustrations with the NHS, Marsh’s overall view is sober and conditionally optimistic:

It is true that socialised health care, as the Americans call it, has many faults. It tends to be slow and bureaucratic, patients can become mere items on an impersonal assembly line, clinical staff have little incentive to behave well and can grow complacent. It is often starved of resources. But these faults can be overcome if high morale and professional standards are maintained, if the correct balance between clinical freedom and regulation is found … The faults of socialised health care are ultimately less than the extravagance, inequality, excessive treatment and dishonesty that so often come with competitive private health care.

But then we have this:

The government, driven as always by the latest tabloid headlines, has set up an increasingly complex system of bureaucratic regulation based on distrust of the medical profession and its professional organisations. Of course doctors need regulating but they need to be trusted as well. It is a delicate balance and it is clear to me that in England the government has got it terribly wrong.

We should always, as near as we can, be booted and spurred and ready to go. Michel de Montaigne

Neither the sun nor death can be looked at steadily. La Rochefoucauld

At the centre of Admissions is a chapter titled ‘Making Things’, in which Marsh describes the deep satisfactions he gets from making furniture and the formidable challenge of personally reconstructing a long-vacated, now collapsing, ancient cottage. He relishes the attention he must pay, the understanding and skills he must develop, and the sacrifices he must make. Through these he gains a sense of personal transcendence, together with a slow, deep pride that comes from patient mastery. Marsh clearly sees the personal sacrifices, skills and identifications he brings to these domestic projects as akin to what he wishes to bring to his publicly accountable work. His strong, assiduous – even obstinate – tenacity fuels his vocational spirit and his personal raison d’être. I like to joke that my most precious possession, which I prize above all my tools and books, and antiques that I inherited from my family, is my suicide kit, which I keep hidden at home.

At the end of the book he returns not only to this premonition, but also to what precedes it – what makes life worthwhile. Clearly kinship, fraternalism, making things and personal purpose are all things that have spirited Marsh’s life. And his perception that he felt these things were perishing in his later years in the culture of the NHS is what so dispirited him. More specifically, in our inevitable declines: A doctor’s duty is to relieve suffering as well as to prolong life, although I suspect this truth is often forgotten in modern medicine. Doctors are frequently accused of playing God but, in my experience, the opposite is more often the case. Many doctors shy away from decisions that might reduce suffering but which will hasten a patient’s death.

Almost at the end of Admissions is this defiantly libidinal sentence: The only meaning of death is how I live my life now and what I will have to look back upon as I lie dying.

And at the very end, his last sentence:

It is enough that I am well for a little longer, that I have been lucky to be part of a family – past, present and future – that I can still be useful, that there is still work to be done.

Surely this wisely opinionated and personally emotional book has much to tell us beyond Marsh’s particularly interesting life and work. David Zigmond, physician in psychological medicine; retired GP

●

Volume 16 Issue 2 Summer 2019

holistic healthcare JOURNAL OF

Re-imagining healthcare

About the BHMA

In the heady days of 1983 while the Greenham Common Women’s Camp was being born, a group of doctors formed the British Holistic Medical Association (BHMA). They too were full of idealism. They wanted to halt the relentless slide of mainstream healthcare towards industrialised monoculture. They wanted medicine to understand the world in all its fuzzy complexity, and to embrace health and healing; healing that involves body, mind and spirit. They wanted to free medicine from the grip of old institutions, from over-reliance on drugs and to explore the potential of other therapies. They wanted practitioners to care for themselves, understanding that practitioners who cannot care for their own bodies and feelings will be so much less able to care for others. The motto, ‘Physician heal thyself’ is a rallying call for the healing of individuals and communities; a reminder to all humankind that we cannot rely on those in power to solve all our problems. And this motto is even more relevant now than it was in 1983. Since then, the BHMA has worked to promote holism in medicine, evolving to embrace new challenges, particularly the over-arching issue of sustainability of vital NHS human and social capital, as well as ecological and economic systems, and to understand how they are intertwined. The BHMA now stands for five linked and overlapping dimensions of holistic healthcare:

Whole person medicine

Whole person healthcare seeks to understand the complex influences – from the genome to the ozone layer – that build up or break down the body–mind: what promotes vitality adaptation and repair, what undermines them? Practitioners are interested not just in the biochemistry and pathology of disease but in the lived body, emotions and beliefs, experiences and relationships, the impact of the family, community and the physical environment. As well as treating illness and disease, whole person medicine aims to create resilience and wellbeing. Its practitioners strive to work compassionately while recognising that they too have limitations and vulnerabilities of their own.

Self-care

All practitioners need to be aware that the medical and nursing professions are at higher risk of poor mental health and burnout. Difficult and demanding work, sometimes in toxic organisations, can foster defensive cynicism, ‘presenteeism’ or burnout. Healthcare workers have to understand the origins of health, and must learn to attend to their wellbeing. Certain core skills can help us, yet our resilience will often depend greatly on support from family and colleagues, and on the culture of the organisations in which we work.

Humane care

Compassion must become a core value for healthcare and be affirmed and fully supported as an essential marker of good practice through policy, training and good management. We have a historical duty to pay special attention to deprived and excluded groups, especially those who are poor, mentally ill, disabled and elderly. Planning compassionate healthcare organisations calls for social and economic creativity. More literally, the wider use of the arts and artistic therapies can help create more humane healing spaces and may elevate the clinical encounter so that the art of healthcare can take its place alongside appropriately applied medical science.

Integrating complementary therapies

Because holistic healthcare is patient-centred and concerned about patient choice, it must be open to the possibility that forms of treatment other than conventional medicine might benefit a patient. It is not unscientific to consider that certain complementary therapies might be integrated into mainstream practice. There is already some evidence to support its use in the care and management of relapsing long-term illness and chronic disease where pharmaceutics have relatively little to offer. A collaborative approach based on mutual respect informed by critical openness and honest evaluation of outcomes should encourage more widespread co-operation between ‘orthodox’ and complementary clinicians.

Sustainability

Climate change is the biggest threat to the health of human and the other-than-human species on planet Earth. The science is clear enough: what builds health and wellbeing is better diet, more exercise, less loneliness, more access to green spaces, breathing clean air and drinking uncontaminated water. If the seeds of mental ill-health are often planted in an over-stressed childhood, this is less likely in supportive communities where life feels meaningful. Wars are bad for people, and disastrous for the biosphere. In so many ways what is good for the planet is good for people too. Medical science now has very effective ways of rescuing people from end-stage disease. But if healthcare is to become sustainable it must begin to do more than just repair bodies and minds damaged by an unsustainable culture. Holistic healthcare practitioners can help people lead healthier lives, and take the lead in developing more sustainable communities, creating more appropriate models of healthcare, and living more sustainable ways of life. If the earth is to sustain us, inaction is not a choice.

Journal of Holistic Healthcare

“The Journal of Holistic Healthcare… a great resource for the integration-minded, and what a bargain!” Dr Michael Dixon

Want to contribute to the journal? Find our guidelines at: http://bhma.org/wp-content/uploads/2016/07/JHH-Essential-author-information.pdf

Standard BHMA membership of £30 a year gives unlimited access to online journal. Print copy subscription +£20

Editorial Board Dr William House (Chair) Professor David Peters Dr Thuli Whitehouse Dr Antonia Wrigley

Join the BHMA to get the journal and other benefits

The Journal of Holistic Healthcare is free to all BHMA members. For just £30 a year members get unlimited access online, regular email newsletters, discounts on events and access to a closed Facebook group (optional). The concessionary rate (students/unemployed/receiving state benefits or state pension) is £15. If you prefer to have a printed copy of the journal which is published three time a year, membership is just £50 a year. Finished with your journal? Please donate it to your local GP surgery, community centre, library etc so others can read about holistic healthcare and the importance of looking after the whole person, not just their immediate symptoms.

PROMOTING HOLISTIC PRACTICE IN UK HEALTHC ARE

Faith, Hope and love in healthcare.

Articles inside