VIEW - Issue 53 – Insight into Palliative Care

VIEW

An independent social affairs magazine

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Issue 53, 2019

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INSIGHT INTO PALLIATIVE CARE

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You matter because you are you and you matter until the end of your life Dame Cicely Saunders

Image: Paul and Margaret FitzPatrick.

Paul, who has been diagnosed with two life-changing conditions, is being treated at St Francis Hospice, Dublin

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Why we all need to talk about palliative care owe a huge debt of gratitude to All Ireland Institute of Hospice and Palliative Care for allowing VIEWdigital the opportunity to produce the latest issue of VIEW on such a sensitive issue.

It has been tough and challenging to compile a range of stories and comment articles that reflect the amazing work that goes into palliative care.

This edition of VIEW will hopefully challenge some of the misconceptions about palliative care. It can be provided for a lengthy period of time as well as the immediate care of those at the end of their lives. And people who receive good palliative care can see and experience the benefit of it on their lives.

In this edition, we talk to palliative care experts such as Dr BJ Miller who practises in the United States, and Dr Kathryn Mannix from Britain who is a long-time proponent of the argument that we all need to talk more about dying and death.

In the Big Interview on pages four and five, she writes: “In over 30 years of palliative care I’ve been involved in end of life care of between 10,000 and 15,000 patients. I have seen distress, and I have sat beside beds where I’ve thought: ‘This is horrid, I would hate this.’ But I can count those cases on the fingers of two hands

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VIEW editor Brian Pelan and maybe a couple more. If we can manage the symptoms, the process of dying itself is something people can manage well and that families don’t need to be traumatised by it. They are left sad, but they are not left terrified.”

Writers such as Kathryn Johnston, Harry Reid, Louise Hagan and Kevin Doonan have all shared deeply personal stories about the loss of loved ones.

I am eternally grateful for these moving contributions.

It was a great privilege also to meet Colin Davis and his wife Victoria at their home in north Belfast. Colin, a former

school principal, was diagnosed with motor neurone disease (MND) in May 2016. He has championed the campaign against the six-month welfare benefit rule where people with a life expectancy of more than six months have to have assessments to prove they are terminally ill.

He has been working with Marie Curie and the Motor Neurone Disease Association to scrap the six-month rule.

"Our aim is to scrap the six-month rule for terminally ill people," he said.

“Nobody can tell me how long I've got to live, and to be reassessed for a Personal Independence Payment (PIP) causes a lot of anxiety.”

All of us have to face the certainty that one day we will die. We would like to think that those who are involved in palliative care will be there to assist us when we become ill or at the end of our life. These services need to be adequately funded for the best support services to be made available.

All of us in the VIEWdigital team are happy that we can use our platform of independent journalism to highlight the brilliant work that is taking place in the palliative care sector – both in Northern Ireland and the Republic of Ireland.

Please spread the word about our latest issue.

Go to our website WWW.VIEWDIGITAL.ORG to read more stories and how to sign up to receive regular issues of VIEW magazine

Become a VIEWdigital champion Contact Una Murphy at unamurphy@viewdigital.org if you enjoy our work and want to know more about becoming a VIEWdigital champion

Contact VIEW editor Brian Pelan at brianpelan@viewdigital.org Contact VIEW deputy editor Kathryn Johnson at kathrynjohnston@viewdigital.org Contact VIEW publisher Una Murphy at unamurphy@viewdigital.org

Making a complaint to VIEWdigital – www.viewdigital.org/2018/08/08/making-a-complaint-to-viewdigital/

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Editorial

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VIEW, an independent social affairs magazine

By guest editor Brendan O’Hara, Programme Manager at All Ireland Institute of Hospice and Palliative Care hen I began working with All Ireland Institute of Hospice and Palliative Care in 2012 my knowledge of palliative care was informed by an awareness of hospices and related charities; and by limited reading including the writings of Dr Sheila Cassidy.

It’s risky to reflect on what my understanding was back in early 2012, with the benefit of the experience gained in the years in between. However, I thought then that palliative care was only for the last days of life, was for people living with cancer and was delivered in hospices.

It is not unusual for someone not to have heard of palliative care at all. Nor should it be surprising that when someone is told by a friend that they are receiving palliative care that the friend asks, does that mean they are dying? Working in this area, I was asked this question.

A key work area of All Ireland Institute of Hospice and Palliative Care (AIIHPC) is to increase awareness and understanding of palliative care, primarily through our annual Palliative Care Week campaign. Institute Director Karen Charnley explains more in an article in this edition of VIEW. To coincide with this year’s Palliative Care Week, we decided to sponsor an edition of VIEW magazine.VIEW’s examination of the issues affecting society is aimed at getting readers to talk about them, which resonates very strongly with AIIHPC’s aim of creating conversations around palliative care.

These conversations need to take place across the palliative care sector, across the wider health and social care system, and across the whole of society.

While serious illness, death and dying are universal, it will be a new experience for each person facing their circumstances of a life-limiting illness or condition and

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While not denying the reality of death, palliative care offers a positive approach which holds space for living life to the full to the very last days of life

increasing frailty. The goal of palliative care is to improve the quality of life for both the person and those important to them.

While not denying the reality of death, palliative care offers a positive approach which holds space for living life to the full to the very last days of life.

To support this quality of life, palliative care focuses on the whole person physical, psychological, social and spiritual.

As each person is unique and complex, a one size fits all response to each person and their family’s situation will not meet their palliative care needs.

A multi-faceted response not only involves health and social care professionals, whether they are specialist palliative care professionals often associated with hospices and hospitals, or those providing generalist palliative care.

Much of the care is provided by family carers and communities. Many people are supported by their GPs, community nurses and other health and social care professionals in their communities. I know from personal experience where family members received this support where they lived, without it ever having been described as palliative care.

For people who may have more complicated symptoms, insights into some of which are provided in this edition of VIEW, more complex support is required.

This may include support through hospice and/or hospital services, as an inpatient or through day services.

Complexity could be around physical, psychological, social or spiritual issues, or a combination of these.

I hope that this edition of VIEW will stimulate further conversations and equip all of us to give a considered response when faced with the question I referred to above: Palliative care, does that mean they are dying?

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the BIG interview Dr Kathryn Mannix, a leading palliative care specialist and author, talks to VIEW editor Brian Pelan about why we need to have more conversations about dying and death and the vital role her sector carries out in helping people to cope with various terminal conditions Can you tell our readers a little about yourself?

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I grew up in the north west of England. I went to a medical school up in the north east of England and met a ‘Geordie’ on my first day and married him. So, I stayed there. I have two children – one is a primary school teacher and the other one is a nurse.

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How would you best describe what palliative care is?

First of all I’d say the thing that it’s not – it’s not only about dying, it’s about managing symptoms the best that they possibly can be, so that people are well enough to live the best life they can, for as long as they can.

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What, in your opinion, has been the key advancement in palliative care?

When I first started in it, it was almost entirely a cancer-focused speciality. Palliative care has gradually moved into treating many more long term conditions such as heart failure or liver disease. hat could we do better when it comes to providing palliative care?

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We could fund it properly – that would be an excellent start. I also think that because palliative care started as a kind of reaction to the overtreatment in cancer care in the 1960s it commenced outside mainstream health services with charitable hospices being set up. Then, gradually it was realised how much benefit that palliative care can give to patients at all stages of lots of different illnesses. So hospices were asked to get involved in hospitals and the community. So bits of it were funded but it has never been properly planned on a population basis

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I think that storytelling is the only way to talk about death.You can’t always talk to people about research findings into the healthcare planning for a major city or a big rural area. our book, ‘With The End in Mind – How to live and die well’ – deals with dying and death. How important is the art of storytelling to you when it comes to talking about death?

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I think that storytelling is the only way to do it.You can’t always talk to people about research findings.

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What do you think about how the mainstream media covers the subject of dying and death?

The difficulty is that you’ve got to sell the news and plane crashes sell, but planes landing safely and on time don’t. So, what is the equivalent of the plane crash reporting of death and dying? If all you knew about air travel was what you read in the media you would never get on a plane. So, if you only know about dying what you read in the media, then you will

think that services are appalling, nobody answers the phone, pain is terrible, there’s panic and choking at the end. We don’t see the process of normal dying. hat is the best advice you have for families, relatives and friends whose loved ones are dying?

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Don’t wait until somebody is dying.

Talk about it now. When I want to get families to sit down and talk about it, my weapon of choice is a cup of tea. It’s a really tender conversation. I know that I need to cover the fact that people will become more tired, the fact that they will sleep more, the fact that they will eventually lapse into unconsciousness. This is all in my book. Then I tell the families that those last moments of someone’s life will be gentle. It might a bit snory, it might be a bit noisy – you’re not going to look at your most beautiful – but it’s not going to be horrific, it’s not going to be panicky, it’s not going to leave them with nightmares. It will actually leave them reassured that they saw something that was more peaceful than they were expecting. That is kind of a gift for them to take into the rest of their lives because that’s what normal dying looks like.

You have talked in the past about us living “in a deathdenying society”. Has there been progress in getting people to start talking more about death?

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I think there has been a bit of movement. I know there have been books written about dying, but that they just haven’t found the audience that my book has found. I don’t think it’s because it’s a better book, I think it’s just because the timing was right. I think we’re also starting to see increasing factual documentaries on radio and television that follow real lives and talking to experts rather than just opinions. I think that’s

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Dr Kathryn.

Mannix, left, with the front cover of her book, right really helpful. So, I think it’s starting to change, but it’s a bit like trying to turn the direction of a tanker, it’s going to be very, very slow.

When many people hear the word ‘palliative care’ – they immediately think that it means the end of life? How do we change that narrative?

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I think that’s really tough. There’s a lot of talk about changing the name of the speciality. In the US, they are increasingly calling it ‘supportive care’ as a more neutral thing, but my prediction is you won’t want to see the supportive care team because you know what that means.

You have to be brave.You have to use the D words.You have to say palliative care team or supportive care team, and you have to trust that the team will have the professional skill to be able to put somebody, who is a bit anxious about seeing them, at their ease. We never have met someone who tells us to go away after they’ve met us, but there’s an awful lot of people who never get the opportunity to meet us, because the doctor or nurse, that’s looking after them, is too scared to have that conversation with them.

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Do you think it’s become easier to live longer, but harder to die well?

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A:Yes, I do. I think we’re in a whole new territory of reaping the mixed benefits of medicine saving people’s lives. We’re now in a position where, particularly, the possibility of a cardiopulmonary resuscitation, for example, CPR seems to be applied on every death bed unless there’s a certificate that says this person has opted out, or this person’s doctors

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If we can manage the symptoms, the process of dying itself is something people can manage well have advised that it wouldn’t be helpful. We need to regain the wisdom that everybody had 100 years ago when everybody understood about normal dying.

The comic Woody Allen once quipped: “I’m not afraid of death, I just don’t want to be around when it happens” Does humour have any role in palliative care?

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Yes. People who work in the palliative care sector, along with the police and paramedics, do use humour as a way of coping. I think it’s something that helps you to keep an emotional balance. Patients and families also use humour as well.

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One reviewer, writing about your book, said: “In her desire to show that

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death can be well managed, she leaves out the mess, fear, pain and unpredictability of dying ...

However we dress it up and think about it, death remains blankly ungraspable and stark.” What did you think about her remarks?

It was a very thoughtful review, and I don’t disagree with that notion, other than to say that my book is talking about the physical process of how our bodies die. It’s talking about the emotional journey that people make over that period of time in terms of dealing with separation, in terms of dealing with farewells and reconciliations. What it’s not talking about is the existential angst which we cannot palliate – it’s the human condition. I would invite that critic to go back through the book and to notice the suffering that is in the book. I’ve written about it and how people live alongside it. In over 30 years of palliative care I’ve been involved in end of life care of between 10 and 15,000 patients. I have seen distress, and I have sat beside beds where I’ve thought: ‘This is horrid, I would hate this.’ But I can count those cases on the fingers of two hands and maybe a couple more. If we can manage the symptoms, the process of dying itself is something people can manage well and that families don’t need to be traumatised by it. They are left sad, but they are not left terrified.

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as your work in palliative care helped you to come to terms with your own mortality?

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Absolutely. The more I see of normal human dying, the less afraid I am of it.

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Supportive: Colm and Victoria at their home in north Belfast

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Ex-school principal living with a terminal condition demands policy change in welfare benefits system

By Brian Pelan ix weeks or six years to live. This is what Belfast man Colm Davis was told when he was diagnosed with motor neurone disease in May, 2016.

I interviewed the father of three children, along with his wife Victoria, in their north Belfast home. The words were spoken by his partner as Colm is now unable to talk – although he constantly tapped out sentences to show me on a device that he had.

“We just looked at each other when Colm was given the diagnosis,” said Victoria. “We both decided to go back to work. It was either that or shut the front door of our house and never come out again.”

Colm, a former principal of Tor Bank school in east Belfast, had to eventually give up his job. He tried to work on after his diagnosis but his voice was already failing and eating was becoming more difficult due to muscle wastage in the throat and he made the difficult decision to retire.

Colm had downloaded his voice in June 2016 and it is now integrated into an app called Predictable on his phone and iPad. They are a remarkable couple – warm, engaging and honest – as they try to deal with a terminal diagnosis. Colm and Victoria have also had to struggle with a benefits system that presently states that you have to constantly be reassessed for welfare support unless you can produce medical evidence which states that you have a terminal illness with six months to live or less.

Colm is supporting a campaign by Marie Curie Northern Ireland and the Motor Neurone Disease Association (MNDA) which is aimed at reducing the trauma of those with the devastating condition when dealing with the welfare system.

Colm also hit out at the controversial six-month rule and is supporting those who have called for it to be scrapped.

The first time that Colm applied in 2017 for the Personal Independence Payment (PIP) to help pay for his care needs was a relatively straightforward process, said Victoria.

“But in the last week of April of this year, a letter came in which said: ‘From August 2019, Colm’s PIP payment will be ending.’ “It asked Colm,” said Victoria “if he wanted to renew it. If so, he would have to make a new claim.”

Victoria, on behalf of her husband, was then involved in a lengthy battle to have his

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The message that Colm Davis tapped out on his device which said that he had taken three days’ sick leave out of a period of 36 years in work PIP restored which involved at one stage her being asked to put her husband on the phone. This was not possible,Victoria told the staff member from the Department of Communities, as Colm could no longer speak due to his condition.

Whilst the claim was eventually restored, both Victoria and Colm were intensely frustrated that they had to go through such a time-consuming bureaucratic process. “We want the sixmonth welfare policy to be scrapped,” said Victoria.

Craig Harrison, Policy and Public Affairs Manager for Marie Curie Northern Ireland, said: “Marie Curie has been

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We have heard countless harrowing stories of people living with terminal illnesses who are being put through distressing benefit assessments

campaigning for a more compassionate benefits system for all terminally ill people in Northern Ireland. The existing system only allows terminally ill people to fasttrack their claim if they can prove they have less than six months to live – an arbitrary and restrictive timeframe which has no basis in clinical reality.

“We have heard countless harrowing stories of people living with terminal illnesses who are being put through distressing benefit assessments and made to wait months for their payments because of this cruel system. Other people, like Colm, are having to endure reassessments after their initial award, despite the fact they are living with incurable, progressive conditions which are only going to get worse.

“The social security system is supposed to provide a safety net for those who are most in need, but the reality for many terminally ill people in Northern Ireland is the opposite. They are being forced to spend the limited time they have left fighting through bureaucracy to access financial support – all the while trying to come to terms with a lifechanging diagnosis for themselves and their loved ones.

“Our priority needs to be creating a better system for terminally ill people as soon as possible, whether this is delivered at Stormont or Westminster. We are pleased that the Department for Work and Pensions recently announced a review of how the benefits system supports terminally ill people. It is imperative that the voices of claimants in Northern Ireland are heard as part of this process.”

Colm has now started to avail of the palliative care services provided by the Northern Ireland Hospice. He and Victoria are lovely people who deserve, like many other people with terminal conditions, to have their time together spent supporting each other – free from bureaucratic struggles.

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REVIEW

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The authors have taken a difficult subject and written about it with knowledge, compassion and, at times, humour A Beginner’s Guide to the End – How to life life and face death

By BJ Miller and Shoshana Berger Reviewed by Mary McManus Practical advice: Mary McManus n May 2014, my 86-year-old father, who was suffering from prostate cancer, was told he had six to 12 months to live. In November of that year, my mother, aged 81, and diagnosed with mixed dementia, fell and broke her hip. Until that point, my parents had been caring for each other and living a pretty independent life with some input from family and a carer who called every morning.

The fall changed everything, giving my mother mobility problems and advancing her dementia. As a family, we had to provide substantially more care with the six of us taking it in turns to stay overnight.

Having a care package helped enormously and we are indebted to those wonderful carers who made a tough time much easier. My father passed away in 2015 and my mother in 2017.

Caring for my parents with advanced illness was unchartered territory and it was difficult to get information at times, especially with my mother’s dementia.

‘A Beginner’s Guide to the End. How to live life and face death’ would have been a helpful resource for me. The combination

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of the experience of the authors, BJ Miller, a top palliative care consultant who has had his own brush with death and Shoshana Berger, a writer with experience of caring for her father with dementia, results in a book that contains sound practical information and advice on the medical, emotional and practical aspects of the end of life for both the person and their carer.

I liked the layout of the book. It is very user-friendly with the following sections, Planning Ahead, Dealing with Illness, Getting Help Along the Way, When Death is Close and After. It is full of useful practical information that is presented clearly and concisely using examples from the professional and personal experience of the authors.

The Planning Ahead section, for example, has information on living wills and advance statements that help people to start thinking about how they want to be cared for if no longer able to articulate their own wishes.

The chapter, Symptoms 101, lists common end-of-life symptoms with

medical and alternative ways to treat them.

A chapter, entitled, Hospital Hacks, offers advice on how to navigate hospitals.

I would have found this chapter really useful as my mother was in and out of hospital in her final year and my father passed away in hospital.

For example, it would have been useful to know that it is possible to ask for the monitoring machines to be put on silent.

Whilst the authors are from the US, most of the information in the book is tailored for the UK, such as when and how to access palliative care.

It also gives a good explanation of palliative care, something I would have found useful when caring for my parents.

The book contains a very handy reference section at the back with references referred to in each section listed such as www.dementia-directive.org, a website that provides a form for specifying what care you would like if you develop dementia. There are also useful to do lists such as for when a person has passed away including how to shut down their social media accounts.

Reading this book on my father’s fourth anniversary was emotional for me and I did shed a tear. The authors have taken a difficult subject and written about it with knowledge, compassion and, at times, humour.

I would recommend this book as a resource to anyone who has elderly parents or who, like me, has completed that journey but will have to consider my own mortality.

• A Beginner’s Guide to the End Published by Quercus Books – https://bit.ly/2yHTVA0

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I think our lifelong task is actually to not run away from death but lean into it VIEW editor Brian Pelan talks to Dr BJ Miller – a leading palliative care specialist who works in the United States

y interview with Dr BJ Miller took place on Skype – not my favourite choice to do an interview as I always prefer actual face to face engagements, Mandate: Dr BJ Miller but at the end of our 30-minute chat, I felt, time we have together. Those are all things in a way, that I knew him. you can do and get creative about.”

He was warm, engaging, thoughtful We then turned to the subject of and humorous – even though the main grief. In a previous talk given by him, he had thrust of our conversation was about dying said that “grief is ‘good’ – a way to reach and death. back and connect with the people that you When Miller was aged 19, a Princeton no longer see.” I asked him to elaborate on student at the time, he decided to climb a what he meant by this. commuter train near his campus. “Just out “It’s not that grief is fun,” replied on the town horsing around, doing nothing Miller. “It can be extremely unpleasant. I particularly crazy,” he said. “We had done just mean that the source of grief is the crazier things.” This time, though, was same thing as the source of love.You can’t different. Miller was electrocuted when really give one without the other.You electricity from the overhead wires grieve for the ones you lost because you jumped to his wristwatch. The electrical loved them.” burns were so severe that he ended up I then asked him do we need to losing three of his limbs. It was that nearrethink and redesign our approach to fatal accident that drove him to go into palliative care. And if so, what ideas would medicine and, ultimately, palliative care, he have in mind? working often with terminally ill patients.

“I break this down to four basic pillars Now, nearly 30 years later, he’s co-written that would help us change,” said Miller. (with Shoshana Berger) a book called A One of them is the policy front, such as Beginner’s Guide to the End: How to live life medical costs. It’s the single biggest cause and face death. of bankruptcy in the US. How do we face the fact that we will “Second would be social issues. How die some day, I asked him. do we as fellow human beings interact “It’s a big question,” he replied. “Old with each other around this subject?

Testament – we ate from the tree of “The third issue is training and knowledge, we have to know we die. We all struggle with it. How do you try to learn to love life all the while knowing it’s going to go. It’s a real trick, but I’ve come to appreciate it just because I can’t change that fact. I think our lifelong task is actually to not run away from it but lean into it.

“Everyone who I’ve ever met who does lean into it finds that their life actually gets richer. They understand how precious time is and that there is meaning to the choices they make because there is not unlimited time.

“I can’t mandate that we all have some beautiful death – I can’t mandate good dying. We don’t need to be so bad about talking about it. We don’t need to be so bad about appreciating each other and the

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How do you try to learn to love life all the while knowing it’s going to go?

education. The last thing is infrastructure, but also more about bricks and mortar. A lot of people say they want to die at home but when it comes down to it they either don’t have a home or they do and it’s not tenable.”

I asked him what he thinks about the pressures that families or friends face if someone wants to die at home? Is a hospice a better choice?

“I think there’s a need for both. I wouldn’t say it’s one or the other. I think dying at home can be a very powerful thing and a ton of work. If you’re not careful, all this beautiful wonderful potential home can become a blur of busyness and chaos and trauma. I think what we need to do is offer realistic choices. Some of us are going to die in hospitals, some of us will die in nursing homes, but I do think we need to build more hospice homes – environments that are designed for a life to close.”

I asked him about his reference to “sensuous gratification” as part of a palliative care approach? You have given examples in the past of the woman who wanted to smoke her favourite French cigarettes at the end of her life and the patient who wanted their dog in their hospice room so that they could feel it lying on their feet at the end of the bed.

“If our mandate in palliative care is to mitigate suffering and maximise meaning or maximise quality of life, well part of that is symptom management and minimising pain.

Some of that is good communication with the family. Those are just a few of the rudiments. What I ask myself is what makes my day? What makes my life worth living?

What makes the day interesting or of value? And it might come down to a meal or time with my animals or a bike ride.

What do these things have in common? I realised that they’re all aesthetic.”

I asked him should sensuous gratification be an integral part of a palliative approach?

“I think so. I think it gets tricky with how do you language it. Because you start talking about aesthetics and I don’t know if people know what that means. I don’t know exactly how to integrate that into palliative care training, but if you ask me, yes, it’s right up there with symptom management and family dynamics. I do believe it should be a fundamental part of our work.”

I would have loved to have continued our chat, perhaps over a few cold beers.

Dr BJ Miller has the art of communicating about the most difficult of subjects – the end of our lives.

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Dementia is not just memory loss, it is brain failure; people lose how to think, speak, feel Una Murphy talks to Joanne Ballentine – a palliative care nursing specialist ereavement starts sooner with dementia than other life-limiting illnesses, as you are losing the person before they die, Joanne Ballentine, (right) a nurse specialist in palliative dementia care at the Northern Ireland Hospice told VIEW. Ms Ballentine helped to organise the first International Conference on Palliative and Dementia Care in Belfast in May 2019 which 270 people attended.

She also lectures part-time in the Palliative Care Learning Academy at the hospice.

“Dementia is not just memory loss, it is brain failure; people lose how to think, speak, feel,” she said.

“Dementia is a life-limiting illness,” she added. “It is not just something to do with old age.”

Ms Ballentine has worked at the Northern Ireland Hospice for 18 years and runs a weekly wellbeing clinic for people with dementia and their carers, with a small team of staff and volunteers, including an occupational therapist, complementary therapist and a creative therapist.

Walking around the £11 million building paid for through fund-raising, Ms Ballantine said she is proud that the Northern Ireland Hospice is the first dementiafriendly hospice in the UK. Everyone from volunteers to the chief executive complete training in dementia awareness, she said.

When VIEW called into the clinic, volunteer Billy Edwards was singing and playing the guitar

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and later there was soup and sandwiches for those who could stay for lunch.

Tracy Smyth from the Alzheimer’s Society is among the team who helps at the clinic. “Palliative dementia care is very new. Ms Ballentine’s conference really put it on the map,” she said.

“No one organisation can do everything. We are the experts in providing information and support for people with dementia,” she said. “The Alzheimer’s Society wants to reach out to as many people as possible.”

Ms Ballentine said that collaborations with the Alzheimer’s Society and the NHS were very important, with dementia diagnosis rates rising and the disease being called ‘the new cancer’.

She is spreading her partnership message both locally and globally; the international conference she helped to organise had delegates from Australia, New Zealand, Europe, as well as Britain and Ireland.

They looked at issues from symptom management to the impact of music to make you feel better.

Ms Ballentine said that the Northern Ireland Hospice had developed its service for people with dementia when it had noticed that it was not getting many referrals. The hospice developed a three-year dementia project through philanthropic funding and the dementia wellbeing clinic was established.

“We wanted to find out how we as a hospice could respond to the needs of people with dementia and decided to find a new way to do it,” she said.

She and her team are ensuring that the physical, emotional and spiritual well-being of people with dementia – like other life-limiting illnesses – is met by the Northern Ireland Hospice.

• For more information – https://www.nihospice.org/

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Every book has a final chapter Louise Hagan, Service Improvement Lead, Palliative and End of Life Care, Belfast Health and Social Care Trust, writes about the challenges she faced when her own father was dying ife is a bit like writing a book. It has a beginning and an end. And in between there are chapters. Some chapters are fast paced, full of adventure. Some chapters are much slower, filled with the everyday motions of life. But every book has a final chapter.

When the final chapter looms, it catches us all by surprise, no matter how young or old we are. Life is a gift. And my own father’s life was a fantastic gift to us.

His final chapter may now have been lived and his book closed but it remains not only in the libraries of our memories but in the chapters of our own books.

When people hear my work revolves around service improvement in palliative and end of life care, the initial reaction is a cock of the head and how difficult that must be. I tell them it’s fantastic when we get it right and motivational when we don’t.

When I started in my role, it was based on a set of recommendations from the Living Matters, Dying Matters strategy.

Boiled down to its most basic, it meant identifying people early who may be nearing the end of life, clear and effective communication and understanding, advance care planning, key worker, coordination of care and planning, and optimum care and support. Just one person not signed up to the collective can take us back to square one, regardless of all the strategies in the world.

In 2008, my own father was diagnosed with a life-limiting combination of renal and prostate cancer on top of existing renal disease. Resection of the kidney tumour may have taken that cancer away but would likely have left him on dialysis for the remainder of his life. Travelling 40 miles a day for dialysis was not a choice he wanted to make, so he chose quality over quantity.

Dad was admitted to his ‘local’ ED suddenly in the summer of 2018. His organs were shutting down and sepsis was spreading through his body. I understood the hints the doctors gave about prognosis but, glancing to my side, I couldn’t be sure other family members did.

We often try to say things in a way that is gentle and kind yet what was needed there and then was gentle, clear honesty. Etched in my memory is asking mum if she understood what the doctor was saying. “Sure, he was ill but this was just a bump in the road, right? They’d patch him up and he’d be back home to live out the rest of his life in his own home.”

The pain of being the one to guide

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Louise Hagan’s father Leslie who died in February this year your own family to the realisation that he understood the rationale for each move might not recover from this episode is a but in reality, it seemed cruel, bumping him gut-wrenching memory that I would rather around the system. not have had to have. I longed for it to Decisions were made with all the have been someone else but it was me best intentions, based on criteria, perceived who forced the brutal interpretation of the need and words on a paper. Patient and doctor’s gentle words into that room. “Do family choice seemed a secondary not resuscitate” was then tumbled out at consideration. the end of the conversation - a breathI don’t recall the word palliative being stopping end point to the discussion and a mentioned once throughout 11 years. blunt beginning to a different set of terms Maybe it was but my memory is that it was we didn’t know we had signed up to. almost actively avoided. Is that because it Words. A few simple words. A wellevokes fear, an end to hope? Or is it intentioned comment that seemed the because there is no clear consensus to right thing to say. “Your condition is what palliative actually means to the progressing.” Progression is positive, right? general population?

It wasn’t. The doctor probably thought When we got dad home after he was they were clearly communicating a very ill, hospice specialists were called in deterioration. They meant no harm, yet a temporarily which definitely hinted at few simple words represented a tangled palliation but the words themselves web of misunderstanding that took much seemed to fall into a puddle that everyone longer to untangle than to say. jumped over. Regardless of what we call it, “Your kidney function has improved we need to be promoting the greatly– we’ll get you home soon”. understanding that care towards the end Fantastic, right? Not when a body is still of life is provided daily by professionals of ravaged with sepsis, blood still being all specialties and none. The key to good transfused and delirium is rife. But one care at end of life is empowering those simple, well-intentioned sentence resulted people with whom we have already built a in a week of frustration, confusion and relationship to be equipped and confident anger. Again, no harm was meant but the to care for, support, and hold our hands as take home message is in seeing the person we make that journey towards the final at the end of those words as a whole part of our lives. person, not a collection of separable body All the strategies, plans, programmes parts. Dad was dying. We knew it. He knew and visions are great but they mean little it. Maybe not today or even this year but unless every single person takes individual we all knew. responsibility to collectively follow that In the space of eight weeks an vision each and every day. impatient dad was moved eight times. With And that’s what we forget. It’s the each move his head dropped further and small things that make a big difference. his heart sank deeper. Each move to us was After the calm and squall, a journey aimed at getting him home. For him, it spanning many wonderful chapters came to seemed to move him further and further an end at home in February 2019 and, in from home. On paper and professionally, I the end, the tide went out peacefully.

Sponsored by All Ireland Institute of Hospice and Palliative Care

Sponsored by All Ireland Institute of Hospice and Palliative Care

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Deirdre Shanagher – National Development Manager at the Irish Hospice Foundation

Nurses for Night Care service performing a vital role for people at the end of their lives ome people just love their job and are ideally suited to it. Deirdre Shanagher ticks all the right boxes when it comes to working in palliative care.

Deirdre, who is from Co Leitrim, is the National Development Manager at the Irish Hospice Foundation. She looks after two programmes – Palliative Care for All and Primary Palliative Care.

One of the schemes she looks after is the Nurses for Night Care Service.

“I got involved with it in 2013,” said Deirdre.

The Irish Hospice Foundation funds the service for people dying with diseases other than cancer. This service provides nursing care, practical support and reassurance for the person and for their families in the last days of their life.

Nurses for Night Care enables people with diseases like dementia, motor neurone disease, advanced respiratory disease, heart failure and end stage kidney disease to receive expert care and support at night in their own homes in their final days. It also provides reassurance and respite for families and loved ones who are caring for someone at home.

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This service is provided via the Irish Cancer Society Night Nursing Service. The Irish Cancer Society funds the service for cancer patients and their families in their own home.

“It started off really small,” said Deirdre of the Nurses for Night Care Service. “But the service has grown considerably. Last year, there were 874 referrals to the service.

“Community palliative care teams, who go into people’s homes, get an idea of when people are dying, and they’ll send a referral form into me. We approve the funding and the Irish Cancer Society deliver the service.

“Funding for this service mainly comes from public donations. It’s estimated that the service will cost around €696,000 for this year alone. The Health Service Executive (HSE) fund part of the budget.

“A lot of people who deliver the service are people who appreciate the real essence of nursing. A lot of those who do it say that it gives them an opportunity to go back to their basic nursing – to be with people and to make a connection with

people, and to do something that’s really meaningful for somebody who is at the end of their life. It’s a really unique situation, because it’s one to one nursing care.”

How long are the nurses with someone at their home, I asked Deirdre?

“The average number of nights that somebody receives is about three,” she replied. “Where possible the same nurse will go in for the three nights, but sometimes that’s not always possible. The nurses are usually in someone’s house from 10pm until around 7am the next day.”

I finished off our interview by asking Deirdre is it difficult to have conversations with someone who knows they are going to die?

“I think people who are living with an illness and who know that they are going to die are much more open to having conversations about it.”

There is no doubt from talking to Deirdre that the Nurses for Night Care Service plays a vital role in helping people with terminal illnesses.

“The need for this service grows every year,” said Deirdre.

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COMMENT Where now for palliative care in Ireland?

Sheilagh Reaper-Reynolds, HSE Strategy and Planning Lead for Palliative Care, says the aim is to ensure palliative care continues on its path of genuine collaboration between the state, voluntary sector, patients and families he 2001 National Advisory Council on Palliative Care (NACPC) Report became the blueprint for service development and delivery in Ireland. It contained recommendations on organisational structures, capital developments and staffing levels, emphasising equity of access and patient choice regarding the location of care.

Unfortunately the period of economic recession reduced the availability of development funding; however, voluntary organisations continued to work tirelessly to raise money for capital projects as well as contributing towards core services.

In more recent years there has been a strong push forward to improve access. In 2018 there were: • 221 inpatient unit beds in 11 locations, accessed by 3,208 people (2,093 in 2010); • Community/Homecare teams in every county supporting 12,582 individuals and their families (9,472 in 2010); • 16,406 patient admissions were seen by teams in 36 acute hospitals.

• Other services provided include Day Care, Outpatients and bereavement care.

As well as developments in direct service provision there has been a wide range of initiatives which have enhanced palliative care. The Palliative Care Clinical Programme has developed a comprehensive Model of Care; rapid discharge guidelines for people who wish to die at home; a competence framework and clinical care guidelines.

The All Ireland Institute for Hospice and Palliative Care has been instrumental in providing a space for collaborative thinking, research and the delivery of Project ECHO as well as a forum for patients and carers. The Hospice Friendly Hospital and Design and Dignity Programmes work to improve the care and environment in acute hospitals.

With regard to children, Palliative Care for Children with Life-limiting Conditions in Ireland was published by the government in 2009. It is estimated that there are just under 4,000 children in

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We are fortunate to have a national night nursing service, largely funded by the Irish Cancer Society and the Irish Hospice Foundation Ireland with a life-limiting condition and that approximately 350 children a year will require access to palliative care. Children and their families are currently supported by specialist paediatric teams in the two national acute hospitals in Dublin, 11 Clinical Nurse Co-ordinators located around the country and one children’s hospice. Care for children at home is supported by the adult specialist teams, LauraLynn and Jack and Jill.

In the community, adults and children also access care through their GP and primary care services. We are fortunate to have a national night nursing service, largely funded by the Irish Cancer Society and the Irish Hospice Foundation, providing almost 10,000 nights of care in 2018.

The 2015 Quality of Death Index,

produced by the Economist Intelligence Unit, ranked Ireland as 4th out of 80 countries. In order to refocus efforts the HSE published its Palliative Care Services Three Year Development Framework in 2017. Among the priorities identified were the completion of capital projects, particular emphasis on the development and integration of community services, to enhance teams in acute settings, and to reduce our over-reliance on voluntary fundraising to meet the core costs of services.

Additional focus was placed on the need for a coherent approach to education and research, improving and measuring the quality of care, redeveloping older multibedded hospices, and access to out-of-hours care and advice. For children the need for respite and seamless transitional care to adult services has been identified.

Whereas many people will lead full lives well into their retirement (a bank of palliative care volunteers perhaps!) a large cohort of ageing adults will live with chronic illness, including dementia. This will require a new approach to healthcare shaped by self-determination and advance care planning. Another significant challenge will be the recruitment and retention of qualified staff. Workforce plans must be based on improved skill mix so as to provide improved quality and efficiency.

Although much has changed in the last two decades the vision and values contained in the NACPC Report continue to guide palliative care. The Department of Health has agreed to undertake a full review of the progress made and to move forward on the development of a revised 10-year plan.

This will ensure palliative care continues on its path of genuine collaboration between the state, voluntary sector, patients and families and in the fundamental belief that palliative care should be about an approach to care rather than just focusing on the location of care.

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Sponsored by All Ireland Institute of Hospice and Palliative Care

A big thanks to all our supporters Fintan Fagan, Chair of All Ireland Institute of Hospice and Palliative Care and Chief Executive Officer, St Francis Hospice, Dublin, says we need to meet the challenge of sharing our expertise and philosophy of care with the wider health and social care system ince becoming Chair of All Ireland Institute of Hospice and Palliative Care (AIIHPC) in 2018, I have gained a greater understanding of why the institute is an essential and vital strategic asset in driving excellence in palliative care. The key to its success is that it harnesses and promotes collaboration between partner organisations which are hospices, health and social care organisations, charities and universities on the island of Ireland.

As individual partner organisations, we could not hope to achieve the successes of AIIHPC and meet the current and emerging demands of the health and social care system. The only way to continue to integrate care, research, education and practice development across the island of Ireland is through each partner passionately supporting the work of the Institute.

In 2020, as AIIPHC will celebrate its 10th anniversary, we will be facing the challenge of providing compassionate palliative care to an increasing population.

Therefore, as specialist palliative care services, we need to meet the challenge of sharing our expertise and philosophy of care with the wider health and social care system to ensure that all people with palliative care needs and their families experience the benefits of palliative care.

Each hospice strives to provide its services to the patients and families in a defined catchment area while working with other local health and social care services and universities to improve access to care and standards of care.

While individual services largely focus on meeting growing and emerging care needs, we need AIIHPC to continue to provide leadership and collaborative opportunities to focus on service user/carer/citizen engagement, research,

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25 partners in AIIHPC Since it was established in 2010, AIIHPC has worked across research, education, policy, practice and public engagement. AIIHPC works with a group of visionary partners who recognise the value of working together to achieve a better, richer experience of palliative care for people with life-limiting conditions.

Together our 25 partners (listed below) have seen firsthand how this collaboration has led to greater investment in palliative care research, a more co-ordinated approach to training healthcare professionals and improved engagement with people with life-limiting conditions, carers and the wider public, which is helping to inform future policy across the island of Ireland.

• Belfast Health and Social Care Trust • Dublin City University • Galway Hospice Foundation • LauraLynn Ireland’s

education, policy, practice and raising awareness of palliative care nationally and internationally.

I would like to sincerely thank all the partners for their support, both strategic and financial.Your support for and

Children’s Hospice • Macmillan NI • Marie Curie • Marymount University Hospital & Hospice • Milford Care Centre • National University of Ireland Galway • Northern Health and Social Care Trust • Northern Ireland Hospice • Our Lady’s Hospice & Care Services • Public Health Agency • Queen’s University Belfast • Royal College of Surgeons in Ireland • South Eastern Health and Social Care Trust • Southern Health and Social Care Trust • St Francis Hospice, Dublin • The Irish Hospice Foundation • Trinity College Dublin • Ulster University • University College Cork • University College Dublin • University of Limerick • Western Health and Social Care Trust

promotion of the work of the institute is vital to its continued success. As custodians of the vision for compassionate palliative care we recall Dame Cicely Saunders exhortation: “There is so much more to be done”.

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Sponsored by All Ireland Institute of Hospice and Palliative Care

Funding aimed at seven key areas Corrina Grimes, from the Public Health Agency in Northern Ireland, says that the Palliative Care in Partnership programme recognises the need for a greater societal discussion about planning for care, death, dying and bereavement alliative Care is about improving the quality of life for the person with palliative care needs and improving the experience of those important to them. Building on the success of the implementation of the ‘Living Matters; Dying Matters’ Strategy, the Northern Ireland palliative care programme – Palliative Care in Partnership – brings together people with palliative care needs, those who care for them, clinicians and other health and social care professionals, service planners and providers, and the Department of Health to ensure the delivery of a whole system, holistic approach to support and care.

Our aim is to ensure that ‘what matters to me’ is addressed for each person with palliative care needs, whether the need is physical, psychological, social or spiritual, or a combination of these, as is often the case.

To ensure people living with a lifelimiting illness have an optimal quality of life, the Palliative Care in Partnership programme is working to raise awareness of palliative care, implement processes to ensure earlier identification of palliative care needs, and ensure that when a person is identified as having palliative care needs a keyworker is allocated to them who will help coordinate their care irrespective of where it is provided and across care boundaries. The programme also aims to promote advance care planning and supporting people to have conversations about what is important to them and their future care, as well as progress actions to improve access to generalist and specialist palliative care services.

Palliative Care in Partnership also recognises the need for a greater societal discussion about planning for care, death,

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Our aim is to ensure that ‘what matters to me’ is addressed for each person with palliative care needs

focus of our future work programme.

The Palliative Care in Partnership programme has benefited from Transformation Funding from the Department of Health which has helped to continue the work to reform and improve palliative care in Northern Ireland.

The funding has been allocated across seven main areas: • Earlier identification of palliative care need in primary care • Increased provision of palliative care education and training to support a range of staff across the health and social care system • Extensions of Marie Curie Rapid Response services across all areas of Northern Ireland • Improved access to out of hours specialist palliative care advice • Public engagement and awareness and promotion of advance care planning • Bereavement support

dying and bereavement and the important role of families, friends and communities in supporting those living with palliative care needs. With the Department of Health, Palliative Care in Partnership members are exploring how the concept of a public health approach to palliative care can be developed and implemented in Northern Ireland and this will be a key

• Increasing the specialist palliative care workforce.

Palliative care in Northern Ireland has come a long way since 2010.

Positive leadership and working in partnership have been key to the successful translation of policy into practice, ensuring more people with palliative care needs, and those important to them, have access to the support and care they need.

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We often see the problems where people are traumatised because they are not ready. Then they die and that trauma continues with their loved ones ...

Social workers Amanda Mellon and Deirdre Kelly talk to journalist Jonny McCambridge about The Heart of Living and Dying initiative eath is one of the few certainties of our existence.Yet it has traditionally been regarded as a taboo subject, too difficult and sensitive to talk about or confront.

The implications of this paradox are clear. People don’t prepare themselves, both in terms of making the necessary arrangements or being mentally ready, for the end. This leads to additional trauma and distress for the person dying and those left behind.

It was exactly this difficulty which led Deirdre McKenna, a Senior Social Work Practitioner for Palliative Care in the Southern Health and Social Care Trust to create The Heart of Living and Dying initiative, a programme of assisted discussions which raise awareness of the importance of talking more openly about dying, death and bereavement, and of making your wishes known.

The advance care planning programme has been so successful that it has already been rolled out across the Northern, Belfast and Western trusts. It seems that, given the chance, people really do want to talk about death.

Amanda Mellon, a Macmillan Specialist Social Worker in the Northern Trust and Denise Kelly, Social Work Lead in the Community, Oncology and Palliative Care team in the Belfast Trust met with VIEW to talk about the programme and getting people to confront their own mortality.

Amanda said: “In palliative care death and dying is our livelihood but it is also about life and living and it can be challenging getting people to talk about it and planning ahead for the future. But we know when they do it can take a lot of the burden off people’s shoulders. The programme runs with groups of people, encouraging them to start thinking about what matters to them in their life and then when the time comes, what matters to them in their death. They are simple chats around tea and coffee but they address deep questions.”

Denise added: “It is a facilitated conversation which usually lasts about two hours where you will have a lead facilitator

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Amanda Mellon, left, and Deirdre Kelly who will explain what way the session is going to run. Then you will break into smaller round-table groups. It is all very gentle and welcoming and supportive.

“The conversation starts with asking people what is their greatest achievement in life, get people thinking about what they are really proud of. Then we move on to what is important to them now and then what would be important to them in the future if they were unwell or unable to care for themselves. We take people gently through that experience.”

The idea is that participants will continue the conversation when they get home. They may decide to write a will, devise a funeral plan or communicate their wishes about medical care.

Amanda dispels the idea that the initiative only exists for the elderly or those who have a terminal illness.

“This is for everyone. We have done sessions with groups of students. It is about encouraging people to have these conversations when they are well, so they

can start to think about it and set some things in place.”

Denise adds: “It is a public health approach to advance care planning. Get people talking about the future when they are well because that is the time to make important decisions, not when you are faced with a diagnosis. Get people talking earlier in life so they are not having to make big decisions when they are in crisis.”

Amanda says “Working in palliative care we often see the problems where people are traumatised because they are not ready. Then they die and that trauma continues with their loved ones. The practical and emotional side of things weighs on people and makes it very hard for them to be at peace at the end.

“The ultimate goal is for everyone to be having these conversations. If everyone was doing it then we wouldn’t need to do these programmes. Approach death and dying like a normal part of life, which it is.”

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A dance to the music of time Writer Harry Reid pens a few lines about his father Bert and his strong desire to die in his own home. His dad died in 2018

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ime is a healer.

Sometimes.

Sometimes, the flipped coin glints, landing tick side up.

Sometimes, it shows the dull timeworn face of tock.

Life turns on a sixpence after all.

Time is a currency.

We get the choice to spend it wisely or foolishly.

We do not get to decide when time’s up.

Nor can we know in advance when our game will move into injury time.

Today, determination to avoid being late propels my ridiculously early arrival.

Time to spare.

Punctuality is essential if I am to intercept my father’s consultant on her morning rounds, conducted as they are in clockwork fashion.

My ambush on the ward has to be dead on time.

Exiting the bus that has brought me, I enter the compound of hospital buildings strewn hugger-mugger to sprout a mazelike concrete forest.

Unlike Ariadne, I have no need to trail a red thread behind me, for I am wearily familiar with this particular labyrinth.

The rhythmic tread of my trudging feet pound out a regular two-step, clip-clop that clatters through the early morning January air that feels more brittle than crisp.

Echoing off the sides of the mish-mash of high and low rise structures I’m passing, my progress sounds disconcertingly militaristic to me in its left, right, left, right, rat-a-tat-tat.

Heading to the only café that is open to visitors at this early hour to this city within a city, I hunch my shoulders against the chill and console myself at the prospect of the surprisingly good coffee on offer at the end of my walk.

It will be welcome fortification ahead of my encounter with an authority that can grant or refuse my request.

Rat-a-tat-tat.

Weirdly, I feel an incongruous smile invade my face.

My subconscious exhales a memory

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Always march to the beat of your own drum son of a past time.

A child gasps for breath in the night.

Panic takes asthma’s hand to pull the small boy up the spiral staircase of annihilating terror that breathing is about to stop forever.

My whimpered siren summons Daddy to my caravan holiday bed.

Stepping outside we drink in the starlit duvet blanketing the moist grass of a County Down field and the graveled path across it.

His sonorously voiced stories of the constellations above, gently guide my mind from fear’s prison.

Breaths gradually come less strangled, then shift into the natural ebb and flow of their own time.

Squeezing my hand with gentle pulses matching the rhythmic march of our paces and their tandem synced crunch, he says: “Always march to the beat of your own drum son, that way you dance to your own tune, and escape the steps others think you should take.”

Nodding an earnest agreement, my smile surely betrayed my incomprehension.

Walking half a century later, I understand what a self-willed Houdini act my father’s life had to this point been.

Escaping the Luftwaffe’s wrathful visitations to his childhood city by evacuation to Crossgar, then the poverty of forced unemployment threatening his young family by enduring lonely spells on the oil tankers of the merchant navy, and later, by taking work in Africa, the homegrown berserkery of a place seemingly intent on eviscerating itself.

Later, after a life blessed with rude health, retirement initially brought more of

the same.

But times change.

I walk past A&E where he escaped with his life from a heart attack only to have a stroke during follow-on surgery.

Then past the Stroke Unit he escaped from after a gruelling and protracted rehabilitation.

Finally, I walk past the building where Macmillan have an information centre where my mother and I discovered that there was no escape from the particular bowel cancer diagnosis he had received.

Time was running out.

Waiting to talk to the consultant, I see my father through the window of the room that has been his lodging for the weeks since a surgeon told him his cancer was inoperable.

My father sits alone.

The morphine he is being given leaves him periodically in a cloud of confusion, but he is clear that he does not want to die in this clean but antiseptic room.

Time for him to go home he says.

The consultant listens while I speak.

Her own father is in hospital too, she says, and she listens intently.

She agrees to put her weight behind him going home.

Seven days of unrelenting family, medical and social services advocacy spawn a tapestry of palliative care, woven from the decisions of many people in various agencies working with limited budgets in the face of much greater demands.

My father is fortunate.

Equipment and personnel are organised.

In the event he only lived for a short time after getting home, but his choice to die at home was honoured.

Surely it is time that a simple choice such as this is a right not a matter of good fortune?

But that will take a change of tune away from the droning dirge of a politics in thrall to market forces, begging the question where the drum beat of a politics of decency is going to come from?

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The ‘invisibility cloak’ of the palliative care nursing team Kevin Doonan writes about the death of his mother Carol and the nurses who assisted his family

Together: Kevin Doonan with his mum Carol who died last year arch 6 to April 5 – 29 days – one day for each year that I’ve been alive. From diagnosis to the day my mum died, it was 29 days.

That was all the time my sister Alice, my brother Paul Jr, my dad Paul and I were allowed to process that my mum had cancer and that she would die within days.

Following these events I would think and do the oddest things. I would look at clocks and watch the seconds tick by. With every single tick of the clock it felt like my mum’s memory was disappearing into the past.

So like a scavenger I searched for memories of her, looking for the sharpest and most vivid memories to store in the permanent parts of my mind. All of sudden the world around me became so much more noisier without her.

I have to say no matter what age you are, that there’s nothing in this world more heart-wrenching than having to see the person who made the very fabric of your soul, the person who paid witness to your first gulps of air, watching them take their last breath. Death had never felt so real.

It sounds really ludicrous to write this but for the longest time I couldn’t even say palliative care because associating the

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words with my mum broke my heart.

Although I’ve now learnt that palliative care doesn’t necessarily mean your loved one is going to die. However my mum’s palliative care team were there day and night because she was going to die soon.

I recall, during my mum’s final few days of life, that I referred to my mum’s palliative care team as the “overnight nurses”.

I remember every conversation with every single nurse, doctor, family member and friend, every smell and every gesture made during my mum’s final days of life.

With every passing day nurse after nurse passed through our family home. It was turned into a makeshift hospital and while our house became a sea of traffic of medical staff, friends and family wanting to get a final chat with my mum, it seemed as though her palliative care team faded into the background.

It’s difficult to explain but we were still able to have special moments and our final goodbyes. The nurses were still doing their jobs, almost with an invisibility cloak on. The nurses that came to stay throughout the night would simply be there but they weren’t there.

All I can remember thinking when we had a nurse staying overnight “Ok, good,

she’s completely safe tonight”.

I don’t know why I thought this because she wasn’t safe, she was dying of cancer. However knowing we had a person medically trained with us at night sent a sudden sense of calm throughout the house.

For five days and nights we sat by her bedside with the palliative care team checking in every few hours. We talked, we told her we loved her and she said it back.

So much love in the room yet so much sadness to come.

On the day she died, one of the palliative care nurses and a district nurse were there. It seemed as though their presence in such an intimate moment wasn’t there, and only becoming present when my mum needed something.

I was sitting on a chair next to her bed, I lay my head next to hers, and my face next to hers. She could no longer communicate.

I was crying, I told her I loved her; I kissed her cheeks, and rested my hand on her head. Nothing can prepare you for when you watch someone take their last breath. She took her last one around 4:03pm on April 5, 2018. It was like watching someone blowing out a candle.

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Liam got what he wanted, a good death. He died with his boots on, sharp as a tack, resolute in the face of dying and knowing he was loved VIEWdigital deputy editor Kathryn Johnston writes movingly about her husband, journalist Liam Clarke, who died in 2015 “The fear of a slow, lingering death blights life now” – my late husband, Liam Clarke, Sunday Times Political Correspondent and Political Editor of the Belfast Telegraph, wrote these when he was diagnosed with a very rare cancer, pseudomyxoma peritonei (PMP).

PMP originates in the appendix and spreads by filling the abdominal cavity with mucin. The most famous sufferer was actor Audrey Hepburn, who died in 1993 – six months after her diagnosis.

Liam had been alerted of a serious omental cake (a mass in his abdomen) on the shortest day of the year, December 21, 2012. We spent Christmas Eve in hospital, where Liam had a gastroscopy and a colonoscopy.

Eventually, he was referred to a specialist consultant, Dublin-born Brendan Moran, at one of the two specialist centres for PMP in the UK in Basingstoke.

Six months later, almost exactly six years to the day as I write this, Brendan gave his diagnosis. “This thing will shorten your life,” he told Liam.

Any chances of a complete cure would involve very radical surgery, known by patients as the ‘Mother Of All Surgeries’ (MOAS) – stripping the abdomen and all affected areas. In Liam’s case, the chances of success were low, judging by the scans.

He wouldn't really know until he opened him up – and he thought it would probably come to that eventually. Removing some bulk could extend his life, even if some remained. He had, Brendan said, after Liam pressed him, ‘probably’ years rather than months.

Liam’s major concern was us – his family. And the prospect of a long and lingering death.

He wrote after his diagnosis: “Loved ones are hit hardest and reduced to a supporting role in which they may be called on to play the part of widow, orphan, morale-booster, or long-term carer during a distressing and lingering

Celebrating life: Liam Clarke on holiday in Turkey in the summer of 2015 with his wife and fellow journalist Kathryn Johnston decline. Savouring chronic pain would be a challenge to most people, certainly to me.”

He investigated all kinds of palliative care, from MOAS to chemotherapy. As his oncologist and consultant agreed, all would have massive side effects.

He had drawn the short straw.

Any ‘curative’ treatment would mean early retirement, disability and lengthy periods in hospital recovering from surgery. Liam investigated many alternatives with researchers in Madrid and London. They held out hope of trials with medicinal cannabis. But PMP is too rare to be included in similar trials.

So Liam was thrown back on his own resources. He was lucky. Although he had plummeting energy levels, and discomfort, by and large he escaped the most searing of pain.

This, he was convinced, and his specialist medical team were open to persuasion, was the result of his eclectic and radical choice of alternative therapies.

However, several times he was rushed by ambulance to hospital for emergency treatment for AF and pain relief and palliative care for a blocked bowel.

His last appointment with his oncologist, just before Christmas 2015, was depressing. The tumour in his lung was large and the abdominal cancer was progressing. His bowel was no longer operable.

He had cachexia, muscle wasting, including wasting of the heart muscle. He had the sickly yellow pallor of someone seriously ill.

On Christmas Day 2015, two days before he died, he repeatedly told us all how much he loved us and that the previous six months had been the happiest in his life.

Liam got what he wanted, a good death. He died with his boots on, sharp as a tack, resolute in the face of dying and knowing he was loved.

And free from the debilitating pain he had feared.

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A caring approach to a sensitive issue Sonja McIlfatrick, Head of School and Professor of Nursing and Palliative Care at Ulster University, talks to VIEW editor Brian Pelan about a Marie Curie funded study which looked at the problem of constipation in people with terminal illnesses he Ulster University has undertaken a research project called DEMCon to help improve care, for those living with a terminal illness, to help them deal with constipation.

DEMCoN stands for ‘Development of an educational intervention into the management of constipation’.

The university, which was granted £170,000 of funding from Marie Curie, conducted research in three of the charity’s hospices in Belfast, Edinburgh and Solihull.

Patients with a terminal illness can often suffer from frequent constipation. The research aimed to develop a pilot educational scheme to be tested by Marie Curie nurses, medics and pharmacists.

If successful, the charity may consider extending the scheme to hospices across the UK. Ulster University Professor Sonja McIlfatrick said: “Despite best practice guidelines and international advice it is still not clear that healthcare professionals have enough awareness of the problem and there are variations of how constipation is assessed, diagnosed and managed in palliative care settings.

“Ulster University's research will be crucial in helping to educate healthcare professionals to overcome these barriers and ultimately provide good quality care for patients and their families.”

The research project was comprised of four stages.

The first phase looked at the literature and the guidelines for the treatment of constipation.

Interviews were carried out in the second phase with healthcare professionals and patients.

The third phase of the study involved the use of an educational intervention with nurses, medics and pharmacists. The final phase

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sought to evaluate the usability and acceptability of the intervention from the perspective of healthcare assistants and patients in a hospice setting.

“A lot of the constipation is caused by the drugs that the patients are on,” said Prof McIlfatrick.

“The challenge is that whenever you are managing the care of someone who is nearing the end of their life, there are so many symptoms that you are treating.

“Someone will have pain or someone will have nausea. When we look at the evidence we find that constipation comes further down the list. And yet it impacts on all the other symptoms.

“Because people are on morphine or other painkillers they can get constipation.

“The question is how are we managing the treatment of constipation?

“It’s a very sensitive issue and in everyday life it’s not something that we talk about,” added Prof McIlfatrick.

“The rates of constipation in the terminally ill are still quite high.

“And it has a real impact from the patient’s perspective.

“Our research project was aimed at educating health care professionals about the issue of constipation.

“We also wanted to look at questions of toilet habits, privacy, dignity, and diet.

“We’re not taking away the pharmacological management of constipation because there are drugs that really work, but in the overall picture we also wanted to look at the non-pharmacological Research project: management of constipation Professor Sonja for patients with terminal McIlfatrick conditions.”

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Vital work: Pharmacist Peter Armstrong

Key medicine role for Belfast man Peter Armstrong talks to VIEW about his work as a pharmarcist with the Macmillan Palliative Care Service Improvement Project Can you tell our readers a little about yourself?

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I’m from Belfast. I studied in Manchester. I went to Australia for a year after I finished university then came back here. I’ve been working at the Belfast Trust for around 14 to 15 years.

What did you do in Australia?

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It was part pharmacy and part travelling, I worked in a community pharmacy in the middle of nowhere.

I wanted to try and experience things that you wouldn’t experience in a major city. I really enjoyed it.

Can you tell me a bit about the Just-in-Case boxes which are part of the Macmillan Palliative Care Service Improvement Project?

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We’re coming to the end of the pilot stage but it’s something that everyone is very keen to roll out. It’s not a new idea. They’ve been used successfully in other places in Europe. The idea is as patients come towards the end of life and are being cared for at home, you don’t want them to be in a situation where they are developing symptoms, such as pain or anxiety in the last days, and not to have medication there. We put medication in it, such as injectable painkillers like morphine.

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Do you plan to roll out this service throughout Northern Ireland?

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Hopefully what we’re going to do with the rollout, working with the regional palliative care programme, is to have a branded Just-in-Case Northern Ireland box that would have advice for carers to say how the box is to be used.

The idea is that the box contains the medicines that perhaps the district nurse or the Marie Curie nurse would use. The whole idea of the box is to have the medication in the home before it’s needed.

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Who would adminster the medicines?

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It would be a healthcare professional who would administer it. Family members won’t administer it. They would be given information on how to contact the district nurse or the Marie Curie nurse.

What is the main advantage of having a Justin-Case box in the home?

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The big thing is that if you don’t have the medication in the home when it’s needed, especially if it’s after hours and there’s a big delay or the GP might not know the patient or if your pharmacy is closed… where do you get the medicines? You might have a situation where a carer is going from pharmacy to pharmacy looking for the medication when they should be looking after their loved one in the last hours of life. It’s a source of reassurance for carers that they know if symptoms such as pain were to develop that there are medicines in the home.

What made you get involved in palliative care work?

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I found there was a real role for a pharmacist in having a link between other healthcare professionals and the patient in terms of education and how those medicines are to be used. I was one of the first palliative care pharmacists.

We’ve now developed the role of the pharmacy in palliative care in the community and the hospice.

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What are the most challenging areas of your work?

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Linking up the different systems in terms of information between the hospitial and the community can be quite challenging. As part of this project we’ve been working with the community pharmacy palliative network. We have been building their confidence and doing a lot of training and promoting them within the community.

Have you enjoyed working with Macmillan?

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They have been a great organisation to work for. They saw the role that pharmacists could provide for palliative care. They funded not only this project but throughout it they provided their support and really helped us to develop it right from the start.

What has been the most positive aspect of your work with the Macmillan project?

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That we have been able to adapt the role of the palliative care pharmacist, healthcare trusts are now in the process of allocating a lot more resources to palliative care pharmacies.

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Clare McKeaveney, a Research Fellow at Queen’s University Belfast

Vital reseach into ‘distressing condition’

By Lisa Smyth ost people have never heard of cachexia.Yet it is a relatively common condition in people with a range of illnesses, including cancer, kidney failure and chronic obstructive pulmonary disease.

Understanding of cachexia, which is an irreversible severe form of body wasting, is limited. It has a range of symptoms, from loss of appetite to muscle wasting, and is associated with lower quality of life, and increased hospitalisation and mortality in patients.

However, research is being carried out in Belfast aimed at helping clinicians identify which patients with end stage renal disease are most at risk of developing cachexia. It is hoped that the project will result in better treatments for patients, as well as improve the psychological impact of living with a lifelimiting condition.

Clare McKeaveney, a Research Fellow from Queen’s University Belfast, working under the School of Nursing and Midwifery, has been working on the project for the past two years.

She said: “Cachexia is a very complex condition and the effects can be very

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distressing for the patient and their family and carers. “It leads to issues such as severe fatigue and weight loss, which can be difficult for both the patient to experience and for their loved ones to witness. We know that people with cachexia can appear emaciated and it can be hard for family members to see their loved ones like that.

“Family members wish to fulfil that caring role by getting their loved ones to eat more.

“However, cachexia isn’t something you can fix by simply eating more, so carers and family can feel like they are failing because their loved one isn’t putting on weight. It has a huge social impact, even things like the family going for dinner become impossible and that can be very detrimental when it comes to palliative care.”

As part of the study, Clare met and monitored patients with end stage renal disease receiving haemodialysis to establish what symptoms of cachexia they had, as well as recording how their condition progressed over time.

This part of the study finished in April and she is currently analysing the data with the aim of presenting her findings at a number of conferences in the autumn.

She hopes her research will help raise awareness of cachexia among clinicians and, in turn, lead to better outcomes for end stage renal disease patients living with cachexia.

“This cohort of patients are much more likely to be associated with reduced survival rates and reduced physical function, as well as a poorer quality of life,” she said.

“Quite often, the characteristics of cachexia are masked by the primary condition and this is the case with end stage renal disease.

“This is because end stage renal disease is a very complex condition and patients experience reduced strength, significant fatigue, cognitive issues and appetite problems as a result of the progression of the disease and the invasive nature of dialysis.

“Therefore, clinicians aren’t automatically thinking that the patient has cachexia.”

Clare said she hopes: “This research will help provide a disease specific diagnose for cachexia and lead to suitable therapies. This will ultimately ensure patients as well as their families are better informed and supported when living with end stage renal disease.”

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COMMENT

Trying to solve the fatigue ‘puzzle’ Michelle Barrett, a research nurse in Our Lady’s Hospice & Care Services, Harold’s Cross, Dublin, writes about her challenging and highly rewarding work in palliative care ot many people realise that Our Lady’s Hospice & Care Services in Dublin has an active research department. The Academic Department of Palliative Medicine is a multidisciplinary research team which includes doctors, nurses, dietitians, a speech and language therapist and a neuroscientist. Our department head is Professor Declan Walsh, Emeritus Chair of Palliative Medicine with both University College Dublin and Trinity College Dublin.

I joined the team as a research nurse in 2015. Prior to this, I worked as a cardiac nurse for many years but returned to college to complete a Master’s in Palliative Care. While studying, I became convinced of the important contribution that research could make in improving quality of life for patients with any life-limiting illness.

Our team primarily researches two common symptoms for which there is currently no cure: cachexia and cancerrelated fatigue. Cachexia is the weakness and wasting of the body sometimes seen in cancer patients, while cancer-related fatigue is a tiredness which is not relieved by rest or sleep. This fatigue affects many people before, during and after cancer treatment. Many sufferers assume that when cancer treatment finishes their fatigue will end, however, it often continues to afflict them.

Not much is currently known about specific causes of fatigue or why some people become more fatigued than others.

Cancer-related fatigue is a complex symptom which seems to have many causal factors. In fact, fatigue is the most common problem reported by cancer survivors and has a greater negative impact than pain, nausea or depression. There are currently limited treatment options available, although survivors who exercise and apply cognitive behaviour therapy have reported some improvement.

Our team is researching the possible causes of fatigue as an understanding of cause can lead to identifying appropriate treatments. One avenue of research we are exploring is whether the heart may

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Fatigue is the most common problem reported by cancer survivors and has a greater negative impact than pain, nausea or depression undergo changes associated with fatigue, while another is whether fatigue is caused more by problems in the brain or in the muscles. We have also examined how best to measure fatigue levels by exploring techniques such as measures of muscle strength or asking patients to rate it using questionnaires.

These studies are a work-in-progress, but we do publish results as the work progresses so others can learn from and build on our research. We also present our work at conferences where we share our findings and have the opportunity to learn from others.

Our interest in solving the fatigue ‘puzzle’ has led us to organise a cancerrelated fatigue workshop where we invited Irish and overseas researchers to

collaborate by discussing ideas and insights as well as identifying future research priorities.

As a research nurse, I work with patients who help our research by participating in our studies. Patient participation is a highly valued and vital part of all research. Patients regularly recount stories of how isolating their fatigue is and say how glad they are that this symptom is being actively researched.

Patients tell of their difficulty explaining to non-sufferers how debilitating their fatigue is and how it is not just regular tiredness.

Fatigue has a negative impact on quality of life at all stages of cancer and so we seek patient participation from those in hospital and hospice settings. It can be more difficult to conduct research with hospice patients, who are often particularly unwell. Nevertheless, patients are aware they have benefited from past research and often comment how they feel good contributing for the benefit of others in the future.

Working in palliative care research can be both challenging and highly rewarding. Our team looks forward to the day when cancer-related fatigue can be better managed and we hope our research will have a significant part to play in achieving this.

• Established in 1879 Our Lady’s Hospice and Care Services is a 200-bed facility that provides specialist care for those with a range of needs from rehabilitation to end-of-life care. Just over 600 staff and 330 volunteers work with residents, patients and their families at a most difficult time in their lives. Person-centred care is provided both on-site in Harold’s Cross Hospice and Blackrock Hospice as well as in people’s own homes across south Dublin and north Wicklow, a catchment area of almost a million people.

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Why we need to talk about dying Dr Wendy Cousins, Course Director for the multidisciplinary MSc in Palliative Care at Ulster University, and George Kernohan, Professor of Health Research, describe how palliative care can help dispel our fears of death through effective control of pain and other symptoms t’s often said that in this world nothing is certain except death and taxes, yet while taxation is a familiar topic for public debate there is still a reluctance to talk about death.

A recent survey of almost 1,000 UK adults carried out by the Academy of Medical Science found that almost a third of people polled refused to answer any questions about the end of life. The survey also found that the biggest worry for members of the public about being with someone as they died is that their loved one would be in pain, with 62 percent of people identifying this as their deepest concern, more than half of people were most concerned the person dying may be frightened, and 40 percent were worried that the person dying might be distressed.

Palliative care can address these issues. The word “Palliative” originates from the Latin “pallium”, to cover or cloak.

When patients receive palliative care, they are cloaked with care and comfort as they receive effective pain control and symptom management.

All their issues, whether physical, psychological, social or spiritual are to be “cloaked”. Palliative care can improve the quality of life for those at any age and at any stage of serious illness, not just at end of life.Yet evidence suggests that patients are often not informed about this type of care. Even those professionally qualified to care for the dying share the public’s reticence to discuss end of life issues.

There is a certain fear as illness advances and we near death.

A report from the Royal College of Physicians found that doctors found it difficult to talk to patients with terminal illnesses about dying with some believing that this could be perceived as a failure on

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Dr Wendy Cousins and Professor George Kernohan their part and that modern medicine was expected to cure all illnesses. A series of research studies carried out at Ulster University Institute of Nursing and Health Research found that allied health professionals, social workers and family

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When patients receive palliative care, they are cloaked with care and comfort

carers also reported that communication barriers made discussing the introduction of palliative care with patients with progressive conditions difficult.

A major barrier was the wish not to cause distress as palliative care was perceived as synonymous with death and dying. This hesitancy can lead to a lack of referral to palliative care services for people who need them. Good communication about end of life care is crucial for ensuring a good quality of life at the end of life and a good quality of death.

The very rational fear of death and dying has been explained by Terror Management Theory which says there is a self-preservation instinct at odds with the inevitability of death. This tension is associated with death anxiety and can lead to people avoiding anything to do with palliative care for fear of its association with death.

The theory comes from American Ernest Becker's 1973 Pulitzer Prizewinning book The Denial of Death, in which he argued that we spend most of our efforts in life avoiding the inevitability of death.

Talking about death can be hard but it’s something we all need to get better at in the public sphere as well as in our personal lives.

Our policy makers need to give a higher priority to discussing how best to deliver palliative care services and end of life care in order to support people, and their families, more effectively.

We need to learn to have these conversations in a timelier way and to have them with a greater compassion and confidence. Talking about palliative care may be difficult but it isn’t going to kill us, accepting palliative care can help people with advanced disease live better lives.

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Dr Joanne Balfe at the LauraLynn Children’s Hospice in Dublin

At the heart of children’s palliative care Brian Pelan talks to hospice doctor Joanne Balfe ngaging and committed – these are the two words I would use to describe Dr Joanne Balfe, who works at the LauraLynn Children’s Hospice in Dublin.

The LauraLynn Children’s Hospice Foundation was established in 2001 by Jane and Brendan McKenna after their two daughters, Laura, four, and Lynn, 13, died within two years of each other. The McKennas had personal experience of the lack of respite or specialist care for children with life-limiting conditions and hoped to build a hospice in their daughters’ honour.

The Children’s Sunshine Home Hospice Project was merged with the LauraLynn Children’s Hospice Foundation in 2006 to maximise fundraising efforts and established Ireland’s first children’s hospice in 2011.

Dr Balfe is very much at ease as I ask her about the challenges and difficulties of her work in what must be one of the most challenging areas of hospice and palliative care.

Dr Balfe, who is proud of the fact that she is from the third generation who was born and raised in Dublin, has been working at the hospice for 11 years.

“I started working here because of my experience of working with children with disabilities. I also did a Masters in Ethics and Healthcare Law because one of the many challenges we come across in children’s palliative care are ethical ones.

“How do we know what we are doing is the right thing?”

I asked Dr Balfe to explain the main challenges and differences between children and adult palliative care?

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“That’s a really good question and it’s really important,” she replied. “We’re talking about children with life-limiting, medical conditions, which are incurable and from which they will die earlier than expected.

“The difference between adult palliative care and children’s palliative care is that most children with palliative care needs have a disability.

“Children’s palliative care is trying to ensure that they have the best quality of life possible. So that they are not in pain, that they are comfortable, but it is also that they are supported in all the things that every other child should be able to do.

So, we know that children should be going to school, they should be playing, they should have friends, they should be able to go out with their family members on days out, go to the park. Children’s palliative care is about giving children with life-limiting conditions, the very best possible life.

“We are talking about children with palliative care needs having care provided for many years. It is a much longer timeframe than adult palliative care “Very rarely some children may be diagnosed with a very aggressive cancer and may be looked after for days or weeks.

“Many of the conditions that we’re looking after are genetic conditions.

“So, you could have more than one member of a family affected. So that’s a real challenge if you think about the emotional impact on the family of looking after perhaps more than one child with the same condition.”

I asked Dr Balfe to elaborate on what she once said about how “aggressive

technological intervention may not be what is best for the child, and perhaps we need to focus more on the quality of life”.

“I believe, in medicine, we should be thinking about a shared decision-making model.You are making these complex decisions, in co-operation with the family.

“The family is key. It takes time to get to know a family, to be able to have this conversation, to know what matters. It’s about what matters to them.”

The LauraLynn Children’s Hospice offers a range of supports, including helping the entire family, giving parents a break from being full-time carers. It also offers families short stays, support, symptom management, end-of-life care and bereavement support.

Dr Balfe said: “We also provide music therapy, art therapy and play therapy.”

LauraLynn needs around €5 million every year so it can provide specialised hospice care for children in its Dublin facility — as well as in hospitals and in family homes.

And while it receives some statutory funding, the vast majority must be generated through donations and fundraising.

Dr Balfe said: “We are really grateful to the people who go out and fundraise.

All our services are provided free of charge to the families.

“I love learning from the familes. I’ve also learnt that there is no right answer.

The world is very grey. Every single day I am amazed by the ability of parents, in particular, to completely and unselfishly care for their children.”

• More details at www.lauralynn.ie

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Nobody wants the conversation about when a heart device should be switched off

An implantable cardioverter defibrillator which is used to treat people with abnormal heart rhythms

Karen McCammon, from the British Heart Foundation, talks to Una Murphy about how the charity is raising awareness over implant aid as part of its approach to palliative and end of life care for patients and families echnology helps keep people alive but how are devices implanted in people with cardiac problems dealt with during end of life and palliative care?

Northern Ireland led the way on heart defibrillation with Professor Frank Pantridge’s mobile defibrillator in the 1960s, funded initially by a grant from the British Heart Foundation (BHF).

Now the BHF is raising awareness among health care professionals on the importance of deactivating the ICD implantable cardioverter defibrillator - the small device which can treat people with dangerously abnormal heart rhythms, as part of palliative and end of life care.

Karen McCammon, the charity’s Health Services Engagement Lead worked as a hospital cardiac nurse before joining BHF three years ago. Raising awareness on switching off the defibrillator will be a key part of her work in coming months, she said.

The implantable defibrillator gives a patient a shock if the heart stops. A planned approach is needed to ensure this does not happen to a palliative care patient close to the end of life, Ms McCammon said.

“Nobody wants the conversation about switching it off,” she added, but having these “difficult conversations” with

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Awareness: Karen McCammon people who have ICDs implanted should be a part of palliative and end of life care, she said.

Community nurses and GPs in Northern Ireland will be given more information by the charity about the importance of communicating to the palliative care patient and their families about when the ICD should be removed.

The new guidance – to be launched by the BHF at Stormont, Belfast on September 10 2019 – will be accompanied by a GP poster campaign and messages to staff via the intranet in Northern Ireland’s

NHS Trusts.

“It is all about raising awareness”, she told VIEW. “The guidance has been developed by heart failure nurses and GPs”, she said.

“Patients’ Electronic Care Records will come up with an alert which will let people know an ICD is in place.

“Technicians, who are the same people who put the ICD in and monitor them, will switch them off as part of their job, either in hospital or in the patient’s home.”

Conversations need to take place with the palliative care patient who has an ICD and their families about when to deactivate the device, she said.

Ms McCammon has been working alongside Craig Moore, Cardiovascular Disease Clinical Coordinator for BHF NI. He said: “This work is hugely important for heart failure patients at the end of their life to ensure they have a peaceful and dignified death.”

• More information from the British Heart Foundation on ICD deactivation is available at – https://www.bhf.org.uk/informati onsupport/heart-mattersmagazine/medical/icds-and-endof-life/icd-deactivation-faqs

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The most rewarding thing is knowing you’ve supported someone to the end of life, keeping them pain-free and comfortable

By Sarah Bruce ementia is a terminal condition and people living with it often have different needs and experiences to people with other terminal illnesses. It is estimated that around 20,000 people in Northern Ireland are living with dementia.

But what particular care is needed for those who are dying with the illness?

I spoke to Groomsport woman, Claire McGoldrick, who cares for people living with dementia in a residential setting.

“Advance care planning is essential to ensure residents living with dementia are supported to help make their own decisions for as long as possible and that their wishes, choices, values and beliefs are upheld when they’re no longer able to. Having conversations early on is really important.”

And how are care packages adapted to meet individual needs?

“Care planning is very much personcentred and exclusive to each person. That means having a good understanding of their personal history and treating every person as a unique individual. All activities of daily living are updated, normally monthly, but care plans are updated as conditions change, to meet the changing needs of the person.”

Ms McGoldrick added: “It’s important to meet the emotional, physical, social and spiritual needs of the person, engaging with the family where possible. If there is no next of kin, we endeavour to have staff with someone at all times so that no one has to die alone.”

Ms McGoldrick also spoke about her work in a specifically Christian ethos and environment.

“I’ve worked and supported people with deep Christian, spiritual beliefs in their final days. With one woman, this meant her choosing hymns that were important to her and listening to them with her. These were then used by the family at the woman’s funeral which, in turn, helped support them.”

Discussing the importance of pain management, Ms McGoldrick said: “We work alongside specialist care and multi-disciplinary teams and district nurses to manage pain, ensure needs are met and that they receive the best quality of care.

“For example, taking care of the skin and good skin pressure relief are really important to prevent bed sores. I need to

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Claire McGoldrick looks after people who are living with dementia ensure a pain relief tool is used and I therefore respond to it as such. observe any signs of pain especially as they “This has implications for the type of cannot always express it.” care which is provided. Indeed most I asked Ms McGoldrick if there were people with dementia have, historically, not any particular challenges to supporting had access to specialist palliative care.” people with dementia in their final days?

The end of life stage of dementia, has “As mentioned, people with dementia previously been referred to as the ‘silent cannot always express if they are in pain. epidemic’. More work is required to With behaviours that may seem challenging remove barriers to palliative care which to staff, we need to be aware that these means people having equal access to are often an expression of pain or unmet support, adequate pain management and needs; thirst or constipation for example. appropriate interventions with more “The most rewarding thing is funding available to improve quality of care. knowing you’ve supported someone Although there is no cure, there are to the end of life, keeping them pain-free treatments to alleviate symptoms. and comfortable.”

Ms McGoldrick said that early In 2015, a joint report produced by intervention and advanced, tailored care Alzheimer’s Society and Marie Curie in planning are critical to ensure that people Northern Ireland reported that health and living with dementia have a better quality social care professionals needed to get of life and a more supported, dignified end better at identifying that dementia is a of life – underpinned by their personal progressive and terminal condition and values and wishes.

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Good palliative and end of life care matters to everyone ...

Paul Gallagher talks to Gillian Thomas – a Macmillan specialist palliative care social worker in the Western Health and Social Care Trust pecialist palliative care social worker Gillian said. “While the health system is very good at Thomas entered the area of end of life understanding what people’s physical and medical care just three months after qualifying as needs are, the psychosocial relates to the a social worker in 2007. emotional needs that people have, their spiritual She took up a post as a CLIC Sargent social needs and also their real practical, financial needs.” worker in the Children’s Cancer Unit at the She found that “unmet psychosocial need Royal Victoria Hospital, Belfast. For the past impacts on decision making, and on the patient three years she has been a Macmillan physical symptom experience, where patients specialist palliative care social worker in the reporting higher anxiety levels described a greater Western Health and Social Care Trust in the number of physical symptoms.” By addressing west of Northern Ireland. psychosocial need social workers have an Her role as a social worker “is about opportunity to change the “culture of dying” and providing the emotional support … it’s present opportunities for transformation and about helping people to understand their growth in the face of death, own world … and then helping them she said. to navigate the journey,” Gillian Social workers should said. receive more early stage “Palliative care is about training to give them working alongside the care knowledge and skills in that you are already getting palliative care to ensure to enhance your quality of psychosocial issues are life and to maintain this,” tackled, Gillian said. she told VIEW. “A knowledgeable This required a focus workforce should lead to on “total symptom a knowledgeable patient management” on the community who can physical, social, better understand their psychological, spiritual and psychosocial needs and emotional components of better deal with their the diagnosis, Gillian said. symptoms, physically and Her recent thesis, emotionally”, she said. written for a master’s “Social workers are a degree from Ulster very humble Gillian Thomas: “ By addressing psychosocial need social workers University, highlighted the profession, we don’t have an opportunity to change the “culture of dying” role and contribution of celebrate ourselves social work to providing enough and I think we psychosocial palliative and end of life care in adult services. could do more to showcase what we do … because quite often Psychosocial care puts an emphasis on the emotional well-being of we are painted in a very negative light, particularly in the media”, the patient along with their family Gillian added. and carers.

Her open and honest attitude is refreshing and will “Good palliative and end of life care matters to everyone; help to remove the taboo of talking about the emotional people are living longer than ever before, often with more support necessary for all those navigating the palliative complex needs and services must be equipped to respond,” she care journey.

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COMMENT

The gender factor in palliative care Professor Merryn Gott, from the Te Arai Palliative Care and End of Life Research Group, School of Nursing, University of Auckland, New Zealand, argues that there has been insufficient attention paid to diversity in both end of life need and experience he World Health Organisation has identified the need to promote high quality end of life care as one of the most significant global public health challenges of the 21st century.

This is a call most countries, including Ireland, have taken on board, with equitable access to palliative care now enshrined in national health policy. However, whilst the evidence base to support practice and policy is growing fast, it lacks a critical edge.

In particular, there has been insufficient attention paid to diversity in both end of life need and experience according to social factors such as ethnicity, socio-economic circumstances, and gender.

Put bluntly, research, services and policy are currently orientated to meet the end of life needs of white, affluent, men.

This is highly problematic because, once you start looking at the evidence, it’s very apparent that there are many social determinants of the way we die. I recently spoke about one of these – gender – at the European Association of Palliative Care Conference. Whilst I knew from research we had done that women have different end of life experiences than men, I had not appreciated the full extent of this difference.

For example, good pain management is central to palliative care. But researching gender differences in the processing and treatment of pain was very eye opening.

For example, there is considerable evidence that women in pain are much more likely to receive sedatives than pain medication when compared with men, and to have their pain under-treated.

Research in the US has found women are only half as likely to be prescribed painkillers after coronary bypass surgery when compared with men. And another study showed that women wait on average 65 minutes before receiving an analgesic for acute abdominal pain in the ER compared to only 49 minutes for men.

Is this because, as the evidence suggests, men are perceived to be more stoic and therefore their pain is taken more seriously? Well probably, but we also need to think about biology as well as social conditioning. For example, basic

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We all need to have a voice in how we support end of life care within our communities and wider societies science research on rodents has demonstrated there are sex differences in pain processing, including in response to opiates, one of the key drugs used at end of life.

However, such findings are rare because 80 percent of such research is undertaken with male mice and rats, as they are viewed to be less ‘troublesome’.

Given that appropriate pain management is one of the cornerstones of palliative care it worries me a lot that we are paying no attention to this mounting body of evidence.

And this is not the only example.

Another relates to the benefits of early palliative care provision, something which has become a clarion call within palliative care since the publication of a study showing early integration not only improves quality of life, but also extends survival time.

The impact of this paper is demonstrated by the 5,000 citations it has received. By contrast, a secondary analysis of the same data by gender has only received 19 citations and remains largely unknown, including by people working in

the field. But it needs to be discussed because the authors concluded that “males who received early palliative care had better quality of life and mood than those who received oncology care alone.

However, these outcomes did not differ significantly between treatment groups for females”. I was amazed when I found this out. I had no idea that the benefits of early palliative care only applied to men. Because no-one is talking about it.

Whilst I could provide many more examples, I will finish with just one more.

Many studies have shown that women are less likely to state a preference for lifeextending treatment than men, with motivation seemingly related to fears of being a burden.

Overall, this is probably just as well given evidence to show that women are less likely to receive such treatment.

For example, women with cancer are more likely to have early Do Not Resuscitate orders written during hospital admission than men. But maybe this is a good thing? There is mounting evidence that men are more likely than women to receive aggressive, nonbeneficial, treatment near death.

Men receive more CPR, more ICU admissions and more chemotherapy of questionable benefit than women at end of life. The reasons for this are unclear and require further investigation. As do the outcomes of this gendered approach to end of life medical care.

Overall, it’s very clear that dying is different depending on our gender. And that current patterns of end of life care by gender are likely benefiting neither men nor women.

We need to not just have this conversation, but also conversations about how other social factors – and their intersection – influence how we experience the end of our lives.

Dying is as much a social event as a medical one and we all therefore need to have a voice in how we support end of life care within our communities and wider societies.

• Link to research mentioned in this article – https://bit.ly/2GPIfzH

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