Choice at the end of life
“Vex not his ghost. O, let him pass. He hates him
That would, upon the rack of this tough world
Stretch him out longer”
William Shakespeare, King Lear
It’s always nice when a major journal like the BMJ decides to give saturation coverage to a topic the day before we are holding a meeting on the same subject, which is exactly what happened when they carried a raft of articles on assisted dying last week, in which the journal called for BMA policy to shift from opposing ‘assisted dying’, or doctor assisted suicide if you prefer, to neutrality. In normal circumstances we would have welcomed the last-minute rush for places at our gathering, but not this time. We had been planning the meeting for some time and had filled all 300 places. Indeed we were already turning people away.
Few areas of medicine stir up stronger feelings than the way in which we manage end of life care, and few ideas provoke more controversy than assisted dying. In other words, exactly the kind of topic that the RSM should be tackling, keeping to our formula of maintaining a non-partisan approach, but providing a neutral arena bringing together people from across medicine and well beyond medicine. There were dire warnings that this meeting might prove a bridge too far, and we certainly needed the steadiest of hands during the planning.
In the event, while speakers and delegates brought passionate views, personal experiences and strongly held ideals of medical practice to the debate, all widely opposed views were listened to respectfully and prompted thoughtful comment.
The meeting was opened by Professor Roger Kirby, Chair of the RSM’s Academic Board, who told us the idea for such a forum occurred to him during a 450km cycling challenge in Vietnam and Cambodia – a journey he considered most arduous. However, on spotting by chance an article in the Sunday Times by his old friend and patient Tony Wicks, which related the sad and moving story of accompanying his wife Margaret for an assisted death in Switzerland, he realised Tony had been through a much more gruelling journey than his own.
Thus the wheels were set in motion for another challenge: an event where Tony could share his story with the medical profession and add his voice to the debate on a subject which continues to resonate strongly with the public. This, despite overwhelming rejection of the assisted dying bill by MPs in 2015 (the bill ran out of time in the House of Lords) so there is no chance of the issue coming back during this parliament and most probably the next.
With the help of Professor Gillian Leng, Trustee of the RSM and Deputy Chief Executive of NICE, we did our best to draw up a provocative yet balanced programme to include the full spectrum of views. From primary and palliative care to epidemiology and the GMC, from disability rights and pro-life to individual cases and campaigns, beliefs and needs were passionately presented and respectfully challenged. We hope everyone took home not simply a reinforcement of their own position but also a new respect for those of others.
Many of us will know of Professor Paul Cosford, a major figure in UK public health and the Medical Director for Public Health England (PHE). A keen cyclist who six months ago was doing a 600km training ride (yes, you read that correctly, that was merely a training ride – putting both of your authors who consider themselves to be keen cyclists to shame). But after a mere 500km he had to quit – he was getting wheezy up the hills.
Roger and Simon would probably still be congratulating themselves for getting that far, but something was wrong. One chest X-ray later and the world was a different place. He had a massive pleural effusion and a collapsed left lung, and the cause was clear: an already unresectable cancer of the lung with liver metastases.
In his speech, speaking for the first time in public about his terminal illness, Paul made it clear that although he now knew that his lifespan was likely to be far shorter than he had anticipated at the start of his epic bike ride, he did not know how short. His quiet humour also showed through – when, in trying to get travel insurance for a holiday, he explained his medical situation only to be asked: did he have a date for his death?
He was certain of one thing: he did not want to die with a medical team thumping on his chest and was keen to sign a DNA cardiopulmonary resuscitation (CPR) form. When shown the form in question: “I thought great, and asked where I should sign? But that is the catch – it seems I can't”. In designing the form, no one had thought to include a signature box. (Fortunately, as Baroness Finlay later pointed out, you don’t need to have signed a form, all you need is to make your wishes clear and available – a capacitous refusal must be honoured even if not on the correct form, provided that it is written and witnessed.)
Paul’s conclusion was ambivalent. He spoke of his distrust of legalistic solutions, saying that he felt that legal interventions often seemed more about preventing people from receiving inappropriate treatment, than taking us much further as to what was appropriate. Advance directives seemed likewise to have a place, but how could one make an advance directive for those circumstances that cannot be predicted? He did not know.
Overall, Paul’s speech showed the importance he placed on having options and choices, even though he clearly did not know what decisions he would take as the time came, other than rejecting CPR. Most of all, it was a clear example of how less is more – his quiet understatement, embracing at times his own ambiguities and those also inherent in the subject itself, but not always visible to those who are never beset by doubts, rightly held the audience spellbound and set the tone for the rest of the day.
Tony Wicks then gave a heartbreaking account of his wife’s terminal neurodegenerative disease and his determination both to follow her wishes in taking her to a clinic in Basel, and to campaign afterwards to bring about legalised assisted dying in the UK.
Julie Smith also spoke persuasively about the problems with the current law, as her husband was denied access to an assisted death at Dignitas, while another patient at the same GP practice was permitted.
But equally strong messages came from Juliet Marlow, representing Not Dead Yet (NDY). She powerfully reminded us that having disability, even very serious disability as she did herself, was not incompatible with a good quality of life, and that there is a very strong disability alliance that is opposed to assisted dying for this and other reasons.
There were so many excellent presentations that we can’t possibly give justice to them all here. However, the outstanding Dr Catherine Forest from Stanford, California, provided us with reassurance that the reality of physician assisted dying (PAD), which has been legal in California for 18 months, and in Oregon for more than 20 years, should allay some of the perfectly reasonable questions raised by those less convinced.
She reported to us that the requests for PAD came from patients who had less than six months to live and whose main concerns were loss of autonomy, loss of control of bodily functions and hence dignity, and anxieties about inadequate pain control. After adherence to a strict 7-step protocol and confirmation of unambiguous patient intent by two physicians, following a 15-day waiting period a final attestation is given and the patient self-administers the medication. This usually results in death within 20 minutes.
Safeguards against coercion by physician or family, which is a criminal offence, seem to be effective, and any healthcare provider has the option not to participate if they have religious or ethical objections to the process.
Baroness Ilora Findlay however was not convinced and raised pertinent questions about the particularly inequitable context of the American health system which a US audience perhaps takes for granted, but a UK one certainly doesn’t. She, as we expected and indeed wanted, extolled the virtues of good palliative care. Not a single speaker took issue with this, but she also gave a rather less rosy picture than some others had in respect of what had happened in other jurisdictions that have embraced physician assisted suicide.
Other speakers reminded us that the Dignitas option is available to only a small number of people and comes at a cost of around £10,000. Unfortunately, access to palliative care in the UK is inequitable: 100,000 people a year (one in four) who might need it don’t have access to a hospice. In the short term, dealing with this inequity and the seriously unmet need for palliative care is arguably more important than a further attempt to change the law to legalise PAD.
Choice and control dominated the day, although perhaps we should have been cautious, given that Paul Cosford had warned us at the start that “Being in control has always been important for me, and continues to be so now. Of course I realise that control is often illusory”. Victoria Butler-Cole, barrister at 39 Essex Chambers, told the audience that recent legal decisions have shown the courts are increasingly determining that greater respect must be given to individuals’ choices at the end of life, and less weight given to the beliefs of doctors and judges.
It took the Scottish sociologist Professor David Clark to remind us of the truth behind that observation: the NHS was not founded on the principles of choice, but equity and fairness. He received one of the warmest rounds of applause of the day.
Another member of the audience pointed out that the quality of care varied immensely. If all doctors were as good as some of those described in some personal narratives, then perhaps much of the current argument would not be occurring; but that wasn’t the case for all. He himself, who had a chronic severe neurological disorder, had received exemplary care. But that might be because he had regularly reminded healthcare providers that his wife was also a professional – a medical negligence lawyer.
Assisted dying does also seem to improve the conversations and evaluations of end of life options. And, according to Mark Jarman-Howe, CEO of St Helena Hospice, it has led to a greater interest in resources for palliative care in places where it has been made legal. He later pointed out that the World Medical Association’s Declaration of Geneva has added as its third pledge that doctors must “respect the autonomy and dignity of my patient”.
Karen Harrold spoke as an experienced Coroner, using a series of vignettes, each one of them poignant, and we also heard from Simon Ringrose of the Crown Prosecution Service (CPS) on how the CPS approaches cases of those who have encouraged or participated in assisted dying. Colin Brewer, another name known to many, then asked a direct question about whether or not he should be prosecuted for his own historical prescribing practice. We half expected our senior CPS official to start to read Colin his rights in response, and then stop and say “only joking” – but he merely gave a considered response that no, Colin would remain a free man.
Professor Jenny Kitzinger, from the Coma and Disorders of Consciousness Research Centre in Cardiff, spoke movingly about her own family experience of the treatment given to her brain-injured sister Polly and her research in this area. Jenny encouraged us to plan ahead and complete an Advance Decision proforma making clear the precise circumstances in which we would wish our own medical treatment to be discontinued. For those who haven’t heard it, we can recommend her interview with Eddie Mair.
So what was the conclusion? Well, there wasn’t one. We are not issuing a position statement, that’s not our role. We took no vote at the start or finish of the meeting – this wasn’t a debate, it was a discussion. But we believe it was a very worthwhile endeavour, backed up by the feedback. Because as the BMJ had made clear the day before, this is indeed an unresolved issue.
As we said, when we started planning the meeting, we did indeed have serious doubts if this was a wise choice. After all, Parliament has ruled out legalising assisted dying very recently, and by a considerable majority – there is no chance of the issue coming back during this Parliament and most probably the next. But we were wrong.
Parliament may have spoken, for now, but the issues have not been resolved. We were also nervous that, as one or two people warned us, the debate had become something of a dialogue of the deaf. And we were wrong again. In fact the afternoon contained a series of high quality talks, mixing poignant personal experience, evidence, clinical and legal perspectives, and conducted in a dignified, often moving, but almost always respectful manner. It was a clear vindication that the RSM can provide an excellent space to tackle controversial topics in a collegiate, respectful, engaging and ultimately fulfilling manner.
If Paul Cosford had the first word, his wife Professor Gillian Leng had the last. She accurately summed up the meeting by saying there was unanimity on the importance of palliative care and the need for greater availability of it, yet no clear consensus on the problems of assisted dying. There was, however, agreement that the existing provision of choice at the end of life was not yet perfected and needed to be much more personalised, allowing people at the end of life to live well.
But probably most of us were still thinking about Paul’s opening remarks, and recalling his quotation from Martin Heidegger, prefaced with an appropriate warning about the source’s own, less than perfect moral universe.
“If I take death into my life, acknowledge it and face it squarely, I will free myself from the anxiety of death and the pettiness of life – and only then will I be free to become myself.” Martin Heidegger.