HEALTH EQUALITY and SOCIAL JUSTICE in OLD AGE A FRONTLINE PERSPECTIVE Dr Riaz Dharamshi

First published in Great Britain in 2022 by Singing Dragon, an imprint of Jessica Kingsley Publishers An Hachette Company 1

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Introduction

Understanding science and medicine can teach you a lot about old age, but we should always be mindful of hubris. A technical understanding of illness does not constitute an emotional understanding of experience and the two should never be confused. Thus, in the practice of medicine, it is important always to remember that our patients will tell us the most important information: what it is like to be them.

Medical knowledge is a tool. It can also be a barrier. It can help diagnose and treat any number of medical problems, but it can also distract you from what really matters.

Old age is not defined only by the medical problems we experience. It is, instead, a very human experience – of ambitions, memories, passions and hopes. At its most basic level, medicine is a tussle with pathology – it either wins or loses. Life, however, is much more nuanced than that: in between the medical practitioner and the illness is a patient, and whatever the outcome, life has meaning to the person in the middle.

Good practice is founded on knowledge and experience, but great doctors transcend the empirical and master the softer skills of communication, empathy and engagement. I used to say that good doctors are the ones who are comfortable with uncertainty. Armed with this maxim, I strode confidently into the lives of my patients and told them that I knew what to do.

There was no moment when I realised I was wrong. What uncertainty? Whose uncertainty? Instead, there was the creeping awareness that my knowledge meant nothing unless I synchronised the rhythms of my practice to the needs of the person I was supposed to be helping. As a 30-something doctor, armed with his learning, what did I yet know about the hopes of someone in their late 80s? Perhaps I was gestated in the dying embers of a paternalistic medical culture, which meant that I was late to the realisation that doctors are not always the best arbiters of what a good outcome looks like. In fact, they often miss the point entirely.

It took me a while to articulate the problem. There are many strands. I was drawn into geriatric medicine by the understanding that older people are often poorly served. I saw that their care was too often determined by the shape of services rather than the shape of their needs. I saw how they were denied appropriate intervention, neglected by families, abused even; how they struggled for care, or even to have their problems taken seriously. I remember my anger when a junior doctor said to me, ‘Are you the Care of the Smelly Registrar?’ My feedback to him was forthright.

Yet, if the context for my commitment was clear in my own mind, the manner of my support was not. I landed, by instinct, on a model of advocacy that treated my patients as weak and incapable – people who needed an enforcer. It was a while before I understood that for all my good intentions, I was enacting the bias about older people prevalent across society: by speaking on their behalf, I was complicit in their loss of voice; by confidently representing what I thought were their needs, I was drowning out their own description. Older people don’t need me to represent them, they need me to let them represent themselves.

Framed in this way, the challenges start to become a little clearer. One starts to look at how the organisation of our services affects the ability of my patients (our oldest and frailest neighbours) to access care: from how they get to hospital, to the clinic environment or the number of different specialists involved. The picture that emerges suggests that we are trying to make it hard for them.

A range of factors impede the delivery of good care, including workload, education and training, clinical record systems, staffing and systems of care. Fundamentally, however, you can only deliver good care if you understand what good looks like for each patient.

Not everyone wants the same outcome. Older people want different things. Some want to be pain free, to breathe a little easier, to make it to their granddaughter’s wedding; others want to remain at home, to not go to hospital, to be with their cats. Some want me to do everything I can to cure them, while others want to die soon.

Therefore, the first lesson is that success looks like whatever your patient describes it as; and in aiming for such variation, you need to work in a healthcare system that allows for it. Not all variation is bad. All patients should be able to expect the same level of care, but not all patients will need it. But while I am trying to persuade you that the individual experience is paramount, I also need to impress on you the importance of our systems and habits of care. No one should be denied care or treatment because they are old; care and treatment should be chosen because they are right for the person. Involving patients effectively in the decisions about the care and treatment they receive results in the right care – and the right care often involves less intervention.

As medicine becomes ever more technical, the potential gap between what patients know and what doctors know widens, creating the risk of ever more delegation of decision-making to the technical experts. To some extent this is inevitable, but technical expertise should not be a pretext for loss of patient autonomy. I may know what is possible and how it could be achieved, but they know what is important. Technical excellence is essential, but by itself it is not enough. We need individualisation as well.

Our ability to respond to patients’ individual needs asks also that we delegate responsibility, autonomy and judgement to the healthcare professionals who deal with them. Too often the nature of care is constrained by the organisation of our system, which, in myriad ways, prevents staff doing what they know is necessary. This can be understood in terms of both the scale of healthcare delivery and the nature of service management. In our drive for efficiency, patients are treated as units of need and staff as units of activity. This approach can squeeze out humanity.

Healthcare is a big, impersonal machine, but meaning is found in personal narratives. Threads of meaning are found wherever you go in healthcare, but they are easily lost. Observing the impacts of our care on real people is informative. A pain score chart is useful but nothing like seeing a patient comfortable enough to engage in conversation with their son for the last time.

The challenges on our health service are fundamentally demographic: we have an ageing population. The need to adapt to this reality is pressing but we should not be distracted. It is possible to enact a healthcare system that better deals with older people in larger numbers, but it does not require us to ignore their individual biographies.

Instead, I argue that it is precisely by understanding our individual patients better, and creating a more circumscribed role for healthcare in the lives of older people, that we will find our way to the kind of health service our population needs.

Over the coming pages, I want to trace for you some of the strands between old age as experienced now, old age as it could be experienced in the future and the current and future shape of healthcare services needed for them. While that may raise the spectre of a confusing entanglement, please do not despair: I propose simplicity. While particular issues may be complex, even complicated, there is always a straight line back to the patient.

Patients are our lodestar, and they will guide us through the discourse. The stories I present to you are drawn from my experiences as a doctor but are altered to protect patients’ identities. They are there to serve as a reminder of what it is all about and a compass to direct us. But enough of the preamble, let us meet Yvonne.

Yvonne

I have known Yvonne for a few years now. Each time I see her, I am surprised that she is still going. The first time I met her, I was fairly certain her time was limited.

I try never to predict the future; patients like Yvonne remind you why not.

Four years ago, Yvonne was already tiny and physically frail. She lived in an ancient cottage nestled in the countryside. It was a July afternoon and I sat with her and her husband in their conservatory, looking out over the grazing sheep in the fields beyond.

Her GP wanted me to find out why she was losing weight and decide what to do about it. She confessed to a dull pain as I palpated the lower, right-hand quadrant of her abdomen. A CT scan showed something, but the radiologist was not entirely sure what – either a collection of infection or, possibly, a tumour. Antibiotics might clear any infection, but she didn’t want to consider anything more involved. She did, however, agree to another scan a month later, to see if the shadow had disappeared. It had. There was no cancer.

Thereafter, I kept an eye on her and occasionally visited her if she became unwell. Over the next few years, she seemed to have shrunk a little more each time I saw her. Later, her memory and cognition had started to fail. She had trouble remembering me or what we had discussed; she was disorientated in time and started to forget the names of friends and relatives. She remained anchored in reality by her husband and their cat, Monty.

A little while ago, I was doing a round in the local acute hospital, and I saw her. A tiny slip, lying in bed. She had the haunted, windswept look of someone with advanced dementia. Her husband told me that the doctors had seen her and decided, with his agreement, not to treat her infection and to let her die in comfort. It was a good plan, except for the fact that Yvonne didn’t die. Without any treatment, she recovered and returned home.

She still seems to be shrinking, and I keep imagining that one day, perhaps soon, perhaps later, she will have become so small that she simply disappears, in a little puff.