SPPC Blog

Reflections from Dr Derek Doyle

As I sat at the bedside of my much-loved wife dying in St Columba's Hospice a few months ago my mind inevitably went back 40 or more years to things that were said to me in those 'early days'. The people who uttered them would never have thought of them as so important as to be repeated years and years later but history has shown they are. Let me share them with you now but not in any special order.

I am indebted to many of the pioneers of Palliative Care here in Edinburgh, many UK cities, most European countries, North America, Hong Kong, Japan, New Zealand and Australia.

Read, then stop and think!

"Palliative care is just good, compassionate care - very much needed but not a new discovery."

"Hospice /palliative care is no more / no less that just good compassionate caring."

"Doctors are getting better at keeping people alive but they seem to forget that all life must have quality rather than quantity."

"From their student days doctors have been trained to see death as a mark of failure. Who wants to work with failure?"

"Doctors seem to have been taught more about opioid dangers than their genuine benefits."

"Good doctors have been giving excellent palliative care for years but did not give it a fancy name."

"Contrary to what so many hospital doctors think, GPs are not idiots. They should try it for a month!"

"How do you prevent this palliative care ward becoming like all the general wards in this hospital?"

"There would be fewer calls for euthanasia if all doctors were up-to-date on pain management which is getting better year on year."

"Are GPs really so busy, even in an occasional evening, that they cannot visit a patient in the local hospice?"

"Listen to the nurses - they often know more about a patient than doctors think."

"Don't snigger at a patient wanting someone to help them pray or read a passage from the Bible for them - most people look for spiritual (though not necessarily denominational) meaning as death approaches."

"Your new specialty - Palliative Medicine - will only survive and justify its existence if it gives high priority to research."

"Remember to reassure patients and relatives that research is not experiments on them."

"Remember that many ( possibly most) dying people secretly wonder if they are dying because of something they have done or failed to do."

"Take every possible opportunity to teach students - medical, nursing, divinity....... Time spent on tutorials is NEVER wasted."

"Remember that Mr and Mrs Public think medical research is experimenting on animals and dying humans. The very word can upset some people."

"Remember that many relatives of a dying person wonder if they are candidates for the same condition."

"Old-fashioned as it may sound, most patients like doctors to shake their hand on ward rounds or to hold a hand of a doctor or nurse speaking to them."

"No matter how busy a palliative medicine doctor is, 10-20 minutes with the closest relatives of a new patient is NEVER wasted time."

"Always explain why a test is being done and how it might help (good practice anyway)."

"Ask first, and if a patient wants to know why medication is being changed, explain."

"Remember that most people are unsure what 'lesions', 'tumours', 'malignancies', 'cancers', and 'sarcomas' are!"

"Try to explain as much as possible to terminally ill people but do not bewilder them more than ever - they are often very muddled anyway."

"Do hospice doctors really know what life is like in a frantically busy, under-staffed, under-funded ward in a general hospital?"

"I expected to see the nursing staff fraught, nervous or red-eyed from crying. What's the secret?"

"Two years ago I came on this committee looking at your application for specialist status of Palliative Medicine. I was opposed to it and ready to walk out. Now I see it as one of the greatest developments in Medical Care in a generation."

This blog is by Dr Derek Doyle OBE, Honorary President of the Scottish Partnership for Palliative Care. Recognised worldwide for the contributions he has made to palliative care, he was the first Medical Director of St Columba’s Hospice, the first Chairman of the Association of Palliative Medicine, the founding Editor in Chief of Palliative Medicine and Senior Editor of the first three editions of the Oxford Textbook of Palliative Medicine.

Palliative and End of Life Care Standards in Scotland’s Prisons

The Scottish Governments Strategic Framework for Action on Palliative and End of Life Care shares a vision that by 2021 everyone who can benefit from palliative care in Scotland will receive it – ‘no matter what their circumstances’.

There is a reality in Scotland’s prisons; prisoners are getting older and facing end of life in prison. It would be fair to say this is not just an issue in Scotland but actually reflects the growing international issue of ageing prisoners. In May 2017 the European Association of Palliative Care commissioned a task force with the aim of mapping Palliative Care provision for prisoners in Europe. Prison systems vary hugely across countries and attitudes to and provision for dying prisoners are variable.

I have been employed in a two year role with the task of implementing palliative and end of life care standards in Scottish Prisons. This role is funded by Macmillan with the primary goal of supporting the NHS staff and Scottish Prison Service staff working in prisons continuing the work of implementing these standards of care.

A 2017 report by Audit Scotland highlighted that there was a higher death rate among the poor in Scotland with mortality rates from cancer and heart disease higher than the rest of the UK. The incidences of cancer are increasing across Scotland, which means there is likely to be a growing number of prisoners with a cancer diagnosis. Prisoners experience a disproportionately higher burden of illness (including infectious diseases, long term conditions and mental health problems) and problems with substance misuse (drugs, alcohol and tobacco). The prison health demographics sees the health age of most prisoners as being at least a decade older than the general public with a shorter life expectancy with the fastest growing population in Scotland’s prisons being males over 50.

A recent report Who Cares? The Lived Experience of Older Prisoners in Scotland's Prisons by HM Inspectorate of Prisons Scotland highlighted the case of ageing prisoners. It discussed the challenges for the staff working in prisons in caring for this group and for the prisoners themselves with their biggest fear, dying in prison. The group surveyed were predominantly serving 4 years or more which is considered a long term sentence.

Prisons have historically been built for young men but the changing face of prisons mean that the environment is often unsuitable for older prisoners. It is a sobering experience when you enter one of the halls in a prison and see wheelchairs, zimmer frames and walking sticks and where the general population would not look out of place in a Nursing home.

The Healthcare for each prison is the responsibility of the Health Board where the prison is situated. The core Health team is made up of Primary Care nurses, Mental Health nurses and Addiction team. They are supported by a GP and varying other visiting professionals from their Health Board.

There is no provision of in-house hospital facilities in Scotland’s prisons and no 24 hour nursing care. There is an out of hour’s system to contact a GP if required. Social care is provided by agencies organised by the Scottish Prison Service.

What was evident in discussions at varying prisons was the challenge in identifying their population who required supportive and palliative care. It was clear that for staff, just like many others; there were myths and misconceptions around the subject of palliative care with most voicing it was about end of life.

An example of work done in one of the prisons which have a larger cohort of older prisoners is in establishing a multidisciplinary Supportive and Palliative Care meeting which allowed for discussion and early identification of these prisoners. I have introduced the SPICT4-ALL tool and there is ongoing discussion how we can apply this.

I recently supported ‘To Absent Friends’ events in HMP Kilmarnock and HMP Glenochil and was humbled by the honesty of the prisoners and the staff in discussing their experiences of loss. The events were well received and there has been further discussion as to how this could be developed.

In the few months since I commenced in this post I have met some extraordinary staff from both the Prison service and NHS, who works tirelessly to ensure that prisoners receive the best standard of care possible within their context. There is an opportunity for those of us who have the knowledge and experience working in Palliative Care to further influence this work and continue to support the staff and those who are in prison.

Living and dying with the 'unknown unknowns'

“there are known knowns. these are things we know that we know. there are known unknowns. that is to say, there are things that we know we don't know. but there are also unknown unknowns. there are things we don't know we don't know.”

- Donald Rumsfeld

Life with a condition like Parkinson’s is characterised by uncertainty.

Getting a diagnosis (the known known) typically takes some time, and even then doctors can’t reliably predict what the future will hold for any individual (a scary combination of known unknowns and unknown unknowns). And as the confusing Rumsfeld quote demonstrates, people find themselves in a bewildering and uncertain world where nothing can be taken for granted.

More than 60 Parkinson’s symptoms are possible - but they are not inevitable, and they affect each person in a unique combination of ways. Rates of progression vary considerably. With the right treatment and support, some people live with the condition relatively well for some years. Others face significant impairments within the first five years.

Many people develop dementia, communication and mental health symptoms that can affect their ability to make their wishes known as their condition progresses.

Around 900 people in Scotland die each year with Parkinson’s recorded on their death certificates, but there is evidence that this is significantly under-recorded. The most recent UK Parkinson’s Audit in 2015 showed that only 28% of people with advanced Parkinson's had any recorded discussion of end of life care issues. Very few people with Parkinson’s access specialist palliative care, despite evidence that people at the end of life report quality of life as bad - or worse than - people with advanced cancer and motor neurone disease.

More than 11,000 people in Scotland are trying to balance hoping for the best while preparing for the worst. But facing the inevitability of declining health can be really tough.

Take Janice, diagnosed eight years ago. She says she is “pretending to be ok”.

“I live for the day, and I don’t think about the future a lot. It flits through my mind and then out again. I’ve tried to make life so normal for my two children. I don’t want my kids to have a sick mum, I want them to live their young lives and not be worried.”

Janice was still working as a palliative care nurse when she was diagnosed – and by coincidence, her first client after her diagnosis was a man dying with advanced Parkinson’s. She found the experience unexpectedly reassuring, “He was an older man – much older than me, and his death really wasn’t that different from those I’d seen with end-stage cancer. I realise that dying didn’t frighten me. I thought I feel OK, I can cope.”

That’s not to say that she is without fear. But what Janice fears is dependency, not death. “I can’t stand the thought of being dependent. I’m the person who does. I value my independence and my ability to help other people.”

And the fear of future impairments is common. One man, diagnosed with Parkinson’s in his mid-thirties, gets his wife to vet Parkinson’s publications for him, so that he does not have to read anything depressing. Some people – including those with advanced illness - prefer to avoid meeting others with Parkinson’s in case they represent their potential future. Gerry has lived with Parkinson’s for twenty years, and says he and his wife use humour to deflect their fears, with jokes about care homes to the fore.

One man told me about his late wife. She lived well with her Parkinson’s for eighteen years, before it advanced to a point that made her last four years very difficult.

By all accounts, she received excellent care and support. But the transition to being cared for was an impossible one for her, and she hated the experience. She liked her carers, but found losing her independence degrading. She said that using a hoist made her feel “’like a piece of meat”.

Her widower says that with 2020 hindsight, he wishes that the family had got more support earlier, like a wet room, a stair lift and a wheelchair accessible car. But he admits that his wife was resistant to adopting what she saw as the markers of increasing dependency.

It can be challenging for health professionals, families and friends to support people affected by Parkinson’s to think about and plan for the future. We’re up against a culture that fears disability, frailty, old age and death, and a condition that is characterised by uncertainty. It would perhaps be less intimidating if advance planning were seen as something for everyone to consider, not just those who are facing a future of increasing ill health.

But the issues people with Parkinson’s face are pressing. Creating a culture that supports people to think about the future can - and must – be done.

Parkinson’s UK has developed a range of accredited information materials about advanced Parkinson’s to support individuals and families to prepare for declining health and the end of life. Our free local adviser service and helpline offer confidential one-to-one support to people affected.

The health professional-led UK Parkinson’s Excellence Network is looking at ways to increase the uptake of anticipatory care planning for people with Parkinson’s, and spread this across services in Scotland and the rest of the UK.

The reasons why we must deliver a change in culture ultimately lie with people living with Parkinson’s. The good news is that Janice is already thinking about her future, with a will pending once complex pension issues are resolved. Gerry has already planned his funeral, and is considering how power of attorney could deliver greater peace of mind for him and his wife. And as one carer, whose wife has had Parkinson’s for more than 20 years said to me:

“This is a subject which nobody likes to talk about, but I think it has to be brought out into the open, so that all families affected by Parkinson’s are able to make the right decisions if they need to. My wife and I are glad we’ve had the opportunity to discuss these issues, because we now have a clearer understanding of each other’s thoughts and feelings. We think it’s really helpful to have a prompt for such conversations while the person with Parkinson’s is relatively well. It’s certainly been positive for us.”

Tanith Muller is the Parliamentary and Campaigns Manager for Parkinson’s UK in Scotland.

If you are affected by any of these issues, please visit parkinsons.org.uk to access resources and free confidential support. access resources and free confidential support.

realistic choices - what matters to you?

Juliet Spiller discusses 'Realistic Medicine', advance care planning, and the how to achieve a real shared understanding of the risk / benefit balance that lies in every treatment and care decision.

Why is it that, so often, it takes the reality of dying to focus the mind on living well? It’s as if the only true justification for taking time to focus on “what matters to me” is hearing that you are running out of time whether that is at the age of 22 or 92.

Palliative care is about controlling symptoms, of course, but it is also, and has always been, about supporting patients and their families to identify and focus on what matters to them and what can bring value for them.

An individual’s core values are what underpin their goals of care, and clarifying goals of care enables an open conversation about realistic choices for treatment and care to start to make sense.

The problem is that most people need support, or at the very least prompting, to consider what their core values are for the first time. If you are not used to thinking about what really matters you may find it hard and unfamiliar.

This way of thinking is even harder to do when faced with a diagnosis of terminal illness and a big blanket of grief and loss and suffering is covering your head.

Time and again I watch patients and families wrestle with the impossible pressure of “making the most of the precious time” when all that fills their thoughts and their view is the loss of the healthy happy future they had planned and worked for.

Learning to notice and get real enjoyment from “the moment” is a skill we all have as children but most lose in adulthood and it takes effort and practice to keep it or to get it back. When you have limited time and limited function it is a skill that can make all the difference in so many ways.

Imagine if we had a healthcare system that supported people to think about their treatment options in terms of what fits with their core values at every stage of wellness and illness. By the time a diagnosis of terminal illness came along we would be confident in what truly matters to us and expert in assessing the benefit / burden balance of an ever-changing range of realistic treatment options.

Our Chief Medical Officer for Scotland's annual report last year presented an invitation for all health and social care professionals to make this shift in the way they support patients and carers. Realistic medicine is an approach and an attitude where shared decision-making happens through respect for the individual’s values, and a focus on what matters which is truly person-centred.

This year’s CMO report provides impetus and strategy for making this vision a core part of everyday healthcare. For Palliative Care specialists it represents the “mainstreaming” of all the core aims and values of what palliative care has at its heart – a recognition that this is every care professional’s job.

Done well this approach enables the benefit / burden balance of realistic treatment choices to be truly shared and understood, and explanations about which treatments will not provide any benefit can make sense for patients and for families.

But the real experts in how to do this are the patients and their carers, and as clinicians and care professionals we have a lot to learn about how we really support individuals with shared decision-making about their treatment and care options.

Awareness of the critical importance of Health Literacy is gradually increasing but if the media interest in the Liverpool Care Pathway and on DNACPR decisions has taught us anything, it is that health professionals needs to focus much more energy on learning from the real experts (patients) about how to explain uncertainty, and how to achieve a real shared understanding of the risk / benefit balance that lies in every treatment and care decision.

No one would suggest we should all be thinking about death and planning for dying all the time – most folk just want to get on with living. But if you ignore or deny what might be ahead you may find that nagging worries about what the future holds creep into your field of vision every now and again and get in the way of enjoying the moment.

Starting an Anticipatory Care Plan (ACP) means that those worries, which take so much effort to constantly push back into the dark corners, can transform into thoughts and conversations and decisions which can be documented. These decisions will in turn be sources of reassurance that your wishes are known and will be respected even if you are too unwell to think about what you want at the time.

It will soon be expected that any health or social care professional might ask you questions like;

“Are you able to think about a time when you might be less well – what do you feel would matter most to you then?” “Who would you want to make decisions on your behalf if you weren’t able to do that?”

Discussing how any treatment options might fit with, or might risk the values a patient recognises as what matters most to them is not optional and it is not a luxury of time. It is of supreme importance for good end of life care but it is also just good care for any patient and their family, at any time. Expect to be asked “What matters to you” and if you are not asked…..please have a think about it and just tell us anyway!

Dr Juliet Spiller, Consultant in Palliative Medicine at the Marie Curie Hospice, Edinburgh.