Improve palliative care and need for assisted dying will melt away
I HAVE been a doctor for 35 years, 25 of them as a palliative medicine consultant specialising in palliative and end-of-life care. Every working day, I meet, listen to, support, advise and treat people who are probably approaching the end of their life and I teach others how best to care for very ill and dying patients and support their families.
I’ve been involved in the care of thousands of dying patients. To date, only five have seriously considered euthanasia. Three dismissed the idea once they realised what palliative care could do to help them live while approaching the end of their life. One found some video footage, from outside the public domain, and decided that euthanasia was not for him; it didn’t seem as peaceful and as dignified a way to die as he had been led to believe. And the fifth contemplated going to Dignitas but didn’t; he was concerned about the effect on his family.
My speciality association, the Association for Palliative Medicine, surveyed its members in 2014; 82% (including me) were opposed to legalisation and 96% (including me) would be unwilling to participate in legalised ‘assisted dying’.
I spoke against ‘assisted dying’ at the public debate at Les Cotils on 1 May. There were many questions from the audience and I hope that the answers given by the panel helped people understand the complexity of the issues that underlie this debate.
Before, during and after that meeting I was struck by the range of people’s understanding of the facts about physician-assisted suicide and euthanasia. It seems to me that a summary of key facts is required to inform those who wish to and those who need to understand it more.
What exactly is ‘assisted dying’? It’s a term that has no meaning in law but is used to mean the supply or administration of lethal drugs by a doctor to a patient in order to bring about that patient’s death. It comes in two forms – physician-assisted suicide (PAS), whereby a doctor prescribes lethal drugs for a patient to swallow; and physician-administered euthanasia (PAE), whereby a doctor injects lethal drugs into a patient. In most countries, including Britain, such practices are both illegal and contrary to the ethical principles that underpin medical practice.
PAS comprises self-administration of a large glass full of barbiturates, after administration of anti-sickness drugs. Data from Oregon in 2016 shows that 50% of those choosing to swallow the drug die within just under half an hour but the range is up to 104 hours. Worryingly the data is only available for half of those to whom PAS was administered during the data collection period.
To date campaigning groups in Britain have restricted their suggestions to change legislation to PAS (and not PAE) for people who have been diagnosed as terminally ill and who have a prognosis of life remaining of six months or less. The Requete, on the other hand, leaves open the questions of whether PAE should be legalised as well as PAS and whether any ‘assisted dying’ law should be limited to people who are dying or whether others should be included.
It also questions whether doctors should have the right to refuse to participate in such practices.
This is a most serious matter.
The minority of places which have legalised ‘assisted dying’ have seen widespread ‘doctor-shopping’. After 20 years of Oregon’s PAS law, only one in three doctors is willing to consider a request. A 2015 survey of 1,000 British GPs found that only one in seven would be willing. The result of such ‘doctor-shopping’ is that requests have to be considered in many cases by doctors who have never met the patient before and have no knowledge of him or her beyond the case notes.
There is no law against stopping treatment and you cannot be treated against your will unless there is doubt about your capacity to make such a decision, in which case a patient’s best interests are protected, in the UK, by Mental Capacity Law.
Ill people can choose to stop disease-orientated and/or life-sustaining treatments. For instance someone with motor neurone disease can choose whether or not to commence non-invasive ventilation (a tight-fitting facial or nasal mask that delivers oxygen under pressure) and if they choose this intervention they can decide, ahead of time, under what circumstances they might like such treatment to be weaned down and stopped. There is already a ‘right to die’; what there is not is a right to involve others in bringing about our deaths. If we refuse or discontinue life-sustaining treatment, our doctors have a duty of care to ensure that our dying is peaceful. With modern palliative care that is almost always achievable.
Much of the media coverage relating to the Requete has related to people with chronic, non-cancerous diseases.
Twenty-five years ago most UK specialist palliative care services and hospices were cancer-focused. That has changed; over the last 10 years, in particular, there has been an exponential increase in the numbers of people with chronic lung, heart, neurological and other diseases, including dementia and frailty of old age, who are referred to specialist palliative care services.
This evolution of specialist palliative care experience has greatly enhanced our knowledge and expertise in looking after people with these problems; expertise which in turn can be shared with general practitioners, community nurses, acute hospital and care home staff who deliver palliative care.
It is little wonder that the UK was recently given the accolade of the ‘best place to die in the world’. After all, Britain was the founder of the modern hospice movement and palliative care has been a clinical speciality for 30 years, with lengthy and in-depth training for doctors who choose to specialise in this branch of medicine.
Palliative care services, including the specialist services in hospitals and hospices, are much better developed in Britain than in the countries and states where ‘assisted dying’ has been legalised. There was no specialist palliative care service in Oregon when assisted dying was legalised there in 1997 and their services remain less well developed than in Great Britain. An Oregon expert told a parliamentary select committee in 2004 that legalisation in 1997 had been ‘in many ways a vote of no confidence in some aspects of palliative care’. That is most definitely not the case in Britain.
Well-delivered palliative care restores hope and helps people live as well as they can until they die and supports their family before and after their death. It is active care that can make a significant difference to people’s quality of life and their outlook on their life.
In Guernsey there is a good standard of palliative care provided by GPs, community nurses and acute hospital staff. You have high quality, though limited, specialist palliative care services provided by HSC in the community and in the Princess Elizabeth Hospital and the seven-bedded, 100% charitably funded in-patient hospice at Les Bourgs. Currently palliative medicine input is two days/month on island with 24-hour telephone advice from Southampton.
That is not enough; there is a tangible unmet need on-island and expansion of your specialist palliative care service, particularly to care homes, people’s homes and your acute hospital, is required. This expansion needs to include dedicated staff to work in the hospital, a seven-day-per week community service, a resident palliative medicine consultant and a single unified electronic patient record to improve communication between different services including the ambulance service.
The Channel Islands sometimes have difficulty in recruiting health care professionals. If physician-assisted suicide and euthanasia are legalised here, those recruitment issues would risk being exacerbated, particularly if, as has been suggested in the Requete, doctors may not be able to decline to participate.
In Oregon in 2017, fear of being a burden was cited by over 50% of those who chose assisted dying as a reason for doing so. Social care provision in Guernsey needs to prevent people being at risk of thinking in these terms.
In addition, you need a Mental Capacity Law which has been tried and tested. Mental capacity, Lasting Power of Attorney and Advance Decisions to Refuse Treatment need to be understood and embraced by the Guernsey population.
To protect vulnerable people, an island-wide approach to advance care planning is essential. This is when people of any age, healthy or unwell, talk about and document what their wishes would be in different circumstances such as if they were to develop acute or chronic medical problems and particularly if they couldn’t communicate or were old and frail with impaired mental capacity.
This is a societal issue and requires cultural change.
The Requete leaves the expected prognosis (lifespan) of an individual open but nonetheless this time frame is an important consideration. How good do you think that 21st Century doctors are at predicting how long someone has to live?
The answer is that we are usually inaccurate – sometimes way off!
A Westminster parliamentary committee investigating ‘assisted dying’ a few years ago was told by a witness from the Royal College of Physicians that trying to forecast death beyond the last week or two of life was ‘pretty desperately hopeless’.
In the Oregon model of ‘assisted dying’, the less-than-six-months prognosis is based on an assumption that the disease takes its course without further treatment. Yet treatments are given with the intention of altering, even sometimes reversing the course of illness. Modern medicine is evolving faster than ever; new treatments are being developed all the time.
It is very tricky to be anything like accurate in predicting how long someone has to live and it’s harder now than ever. To base decisions on ending life on such shaky foundations is highly dangerous.
People often fear dying badly. A good death is a very individual thing. It can be achieved for far more Guernsey residents in the future:
u By establishing advance care planning island-wide
u By having, understanding and feeling protected by a tried and tested Mental Capacity law
u By strengthening social care to minimise the risks to ill and disabled people of feeling a burden on their families
u And by investment in your specialist palliative care and palliative care services.
None of these are a quick fix yet all need to be sorted. Do this and I strongly believe that the need for assisted dying legislation on this island will melt away.
Palliative care is not a panacea – no branch of medicine is that. But it has been shown to have the potential to remove the suffering and fear of dying.
In a world of media sound bites and 24-hour news with headlines being grabbed by particular high profile cases, the benefits of palliative care are being obscured to the detriment of this important debate.
DR CAROL L. DAVIS,
Consultant in Palliative Medicine,
University Hospital Southampton NHS Foundation Trust.