Assisted dying

This private life

How far does the right to ‘private life’ go? Noel Conway, who has motor neurone disease, feels that his inability to arrange an assisted death without fear of his ‘assistant’ being prosecuted, is an intrusion on his right to private life. He is barred from taking steps to manage his death in the way he would like. Additionally, his team will argue that the current law results in someone with severe physical disability such as his being discriminate aganist. Thus, he proposes that two articles of the European Convention of Human Rights (ECHR), 8 and 12, are contravened by the 1961 Suicide Act.

Article 8 has been examined in relation to end of life issues several times over the last few years. Most recently, the Janet Tracey case touched on it from a quite different direction – was her right to private life infringed by medical staff who did not engage her in discussion about a DNACPR notice?

It is interesting to look at the Tracey judges’ reasoning in the light cast by Noel Conway’s situation – a legally dubious exercise I am sure, but possibly helpful in view of the fact that our legal process relies on precedent.

Firstly, do DNACPR decisions have anything at all to do with assisted dying (AD)? I would say yes, insofar as discussions and decisions around CPR relate to what goes on in the last hours or minutes of life. They relate to patients wishes as regards dignity, and how their body is physically handled. They reflect a patient’s attitude to mortality, and whether they feel ready to die without final, heroic measures (of course, we know that the CPR decision does not ultimately rest in the patient’s hands, but their view on it remains of paramount importance).

The judges* in the Tracey case thought so too, for they invoked the case of Diane Pretty (see below), confirming that from a legal perspective there is a degree of overlap,

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The judges begin by setting out the case against the medics (embodied in this instance by the ‘secretary of state’ [SoS]);

The claim as now advanced against the Secretary of State is that he breached Mrs Tracey’s article 8 rights by failing to publish national guidance to ensure (i) that the process of making DNACPR decisions is sufficiently clear, accessible and foreseeable and (ii) that persons in the position of Mrs Tracey have the right (a) to be involved in discussions and decisions about DNACPR and (b) to be given information to enable them so to be involved, including the right to seek a second opinion.

The Tracey case was about consultation, what was said (or not said), rather than about what was done or not done. So in this regard, extrapolating to Noel  Conway’s situation is of limited value. However, the judges are sympathetic to the barrister who is presenting the case against the SoS;

Mr Havers QC submits that article 8 is engaged by a DNACPR decision because it concerns how an individual chooses to pass the closing days and moments of her life and how she manages her death: see Pretty v UK (2002)

And,

It is a decision which concerns a patient’s personal autonomy, integrity, dignity and quality of life.

They seem to accept that Article 8 is highly relevant to end of life scenarios.

 

Then the view of the opposing barrister Mr Sachdeva, is explored,

He submits that it is not sufficient to say that article 8 is engaged simply because the decision which is under consideration impacts on the physical integrity and autonomy of an individual. But he has been unable to identify the criteria by which to determine whether article 8 is engaged by the withholding of medical treatment. 

But this is rejected in a powerful paragraph from the judges,

In [our] judgment, however, none of Mr Sachdeva’s submissions justifies the conclusion that article 8 is not engaged by a decision to impose a DNACPR notice.  A decision as to how to pass the closing days and moments of one’s life and how one manages one’s death touches in the most immediate and obvious way a patient’s personal autonomy, integrity, dignity and quality of life.  If there were any doubt as to that, it has been settled by the decision in Pretty.

 

We know that Diane Pretty failed in her attempts to prove that a right to choose death was not the same as a right to private life – she took it to the House of Lords and the European Court of Human Rights.

As A.C. Grayling summaries in this article,

– –  Mrs Pretty’s lawyers based their arguments on the most important rights in the [European Human Rights] Convention: the right to life, the right to be protected from inhumane treatment, and the rights to privacy and freedom of thought and belief. They argued that these rights give Mrs Pretty the right to choose when and how to die. The grounds they put forward were, first, that a right to life includes a right to die; second, that if Mrs Pretty is denied the chance to end her life before it becomes intolerable she would in effect thereby be subject to inhumane treatment; and third, that her rights to privacy and freedom of belief give her the autonomy to decide what to do with her own life.

The judges disagreed with all these arguments, saying that they ‘stand the whole purpose of the Convention on its head’ on the grounds that the Convention’s provisions aim at protecting and sustaining life, and that because ‘death is the antithesis of life’ the Convention accords no right to die nor to choose when and how to die.  – –

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Back to Tracey; other cases involving successful applications that Article 8 was contravened are covered, including one in which a DNACPR decision was made and diamorphine given [Glass v UK (2004)], and a case where an abortion was requested by a woman who suffered from such bad myopia that she did not think she could cope with the pregnancy. The judges recall that in this case,

The [European Court of Human Rights] also reiterates that “private life” is a broad term, encompassing, inter alia, aspects of an individual’s physical and social identity including the right to personal autonomy, personal development and to establish and develop relationships with other human beings and the outside world.

Article 8 is therefore seen to extend to aspects of personal identity that are clearly relevant to a person approaching the end of their life.

 

Evidence from The Equality and Human Rights Commission is then reviewed, which emphasises that any decisions based on the quality or value of life must be led by patients,

Mr Wolfe QC, for The Equality and Human Rights Commission, emphasises the difference between (i) medical issues (such as whether CPR might work) which are matters for the clinicians to decide and (ii) questions relating to the welfare of the patient in the widest sense (including social and psychological issues) which are essentially for the patient to decide. It is for the patient and not for others to say that a life which the patient would regard as worthwhile is not worth living…

 

Later, the Tracey judges bring the NHS constitution into the argument; it says,

 “You have the right to be involved in discussions and decisions about your health and care, including your end of life care, and to be given information to enable you to do this.  Where appropriate, this right includes your family and carers.”

 

Finally, in the ‘OVERALL CONCLUSION’ , they refer to,

…autonomy, integrity, dignity and quality of life of the patient.  It is accordingly critical to good patient care. The duty to consult is of course part of a clinical process.  That process is individual to each patient albeit that it is informed by good clinical practice.

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We are all interested in how Noel Conway’s case at the High Court goes. In a way, we are all judges, as many of ‘know’, or think we know, what is right already. (This brief and very confident ‘anti-‘ piece in the Spectator is an example; it seems so straighforward to the author!) I worry that this case will go the way of others (most recently that of Tony Nicklinson), with judges concluding that the societal implications of legalising AD are too great, and that parliament, as the natural forum for discussing societal change, must decide. If that is the case, we are unlikely to move forward in the short term.

However, I think this reading of the Tracey judgment shows that Article 8 is intimately relevant to how people wish to be treated as they move towards of the end of their lives.

 

Note:

* Lord Justice Ryder and Lord Justice Longmore – their separate comments are presented here as though co-written by ‘the judges’.

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Assisted dying – duty and conscience

 

However far Noel Conway’s legal challenge to permit a medically assisted death goes, it represents, I believe, a particularly strong wave on the rising tide of argument that will eventually overcome the status quo. Minds are changing, supportive views are being revealed.

A recent letter in The Times from Dr David Nichol, a neurologist and former opponent of assisted dying (AD), describes how a friend who received ‘exemplary palliative care’ nevertheless requested an assisted death in Belgium. In 2016 Sir Richard Thompson, immediate past-president of the Royal College of Physicians, stated his support. Well before that, Prof Sir Graeme Catto, former president of the General Medical Council, became chair of Dignity in Dying. In 2014, George Carey, former Archbishop of Canterbury, dropped his opposition to AD, saying, “The old philosophical certainties have collapsed in the face of the reality of needless suffering.”

Waves on a rising tide? Perhaps. And they make me wonder – how will the NHS respond should AD become legal?

Baroness Finlay wrote a cautionary essay with the title ‘What if ‘assisted dying’ were legalised?’ last year. This was grounded in the ‘legislative drift’ that some feel has occurred in the Netherlands, where patients with non-terminal and cognitive or mental health problems have requested death.

‘Increasing numbers of people are having euthanasia because of psychiatric illness (56 cases last year) or dementia (109 cases last year). In 2015 doctors agreed to administer euthanasia to a woman in her 20s suffering from post-traumatic stress disorder and ‘therapy resistant’ anorexia nervosa. Some Dutch campaigners want suicide drugs to be available to people who are not ill but just ‘tired of life’ ‘

Nevertheless, the latest country to legalise AD, Canada, has seen over 1300 people choose ‘medical assistance in dying’ (MAID). The divisions and uncertainties that have arisen within the medical community there are worthy of our attention. The specific areas I would like to examine are a physician’s duty to offer AD as a therapeutic option, and the morality of conscientious objection.

 

The duty to discuss

Mara Buchbinder explored the ‘physician’s duty to inform’ in a recent article, suggesting

‘…that we should not take for granted that communication about [assisted dying] ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves.’

So how and when should doctors bring up the subject, if AD were to become legal?

Otte and colleagues interviewed 23 GPs in Switzerland, and identified several factors that appeared to inhibit communication about AD. These were divided in three broad areas: concerns about personal psychological well-being, conflicting personal and religious values and perceived conflict with their understanding of the physician’s professional role. Perhaps it is an obvious comment, but if AD were to become legal, we must accept that doctors will vary greatly in the emphasis and frequency with which they mention it as an option.

I can imagine both active and passive approachs. The active approach might involve presenting AD as an option from the moment terminal disease is diagnosed. Then, later (perhaps when a certain burden of symptoms had accumulated and treatment was manifestly failing) doctors might remind patients that the option still existed.

The trouble with this approach, to me, is that we would be emphasising the ultimate futility of life-extending therapy from the very outset. It is nihilistic. However, as Roger Ladouceur noted in a personal article in the Canadian Family Physician, ‘Today is too soon and tomorrow might be too late’ – a deteriorating patient can sometimes lose the strength or mental capacity to engage in discussions once they have entered the late phase of illness. If are to be followed through, should be made when patients still have to ability to direct their care.

In contrast, a passive approach might involve patients being informed once about the possibility of AD, perhaps by letter, of in a leaflet displayed in waiting rooms (‘…on being diagnosed with a condition associated with a prognosis of less than six months, you have the right to request a medically assisted death.’) – but after that no reminders would be given. In this case, only patients with a fairly developed opinion on the subject would take things further. Patients vary greatly in the way they explore options, and for many, only those that are put on the table, explicitly, are discovered.

A pathway to a medically assisted death shown below, from Ontario, begins with an enquiry from a patient.

AD (or MAID) is, clearly, patient driven (for it to be otherwise would be absurd), but there may be parallels with DNACPR conversations here. If the issue of resuscitation is left to doctors to bring up ‘when the time seems right’, it is often not all. Just as efforts are being made to bring DNACPR within more general discussions about limits of care, and to ensure that these discussions happen early on, perhaps AD will also to be presented ‘routinely’ following certain diagnoses. There is a fine line between ensuring knowledge of, and fair access to AD, and being seen to encourage it. This ethical high wire is one that would have to be traversed.

Given these concerns, the NHS would need to develop an agreed, uniform approach. As in many other clinical areas, the details would probably be devolved to individual Trusts and CCGs. Therefore, the first thing I see happening after the legalisation of AD, is a letter from the Department of Health and NHS England requiring Trusts to develop local protocols. Presumably, within secondary care, the responsibility will fall to committees comprising palliative care consultants, oncologists, neurologists and other involved specialists. However, given that AD is usually provided outside the hospital (this bring part of its appeal), primary and community care would have to be well represented. Some will be reluctant participants –  but the details regarding access and personnel will have to be described.

Some will object and remove themselves from the process.

Some may privately determine not to mention it to their patients at all – they will be ‘conscientious objectors’.

 

Conscientious objection

In Canada, the Supreme Court has already found that blocking access to MAID is ‘unconstitutional’, thus a conscientious objector, although not compelled to take part in it personally, must not prohibit a patient’s access to it. They must provide all the necessary information if requested, and ensure an ‘effective referral’. However, there are bound to be degrees of engagement, and the debate over whether it is justifiable to object at all has been raging.

In response to a paper by Christopher Cowley  (£) defending the right of doctors to refuse referral for AD, Julian Savulescu and Udo Schuklenk wrote a pretty blistering article (free) – ‘Doctors Have No Right to Refuse Medical Assistance in Dying, Abortion or Contraception’.  They state that it is clearly wrong for an individual doctor’s beliefs to restrict access to a service that the state has determined can benefit patients, and (through the principle of distributive justice) society as a whole. They go on to suggest that doctors who are not comfortable with such treatments should be restricted themselves, in the type of medical career they choose to pursue. Parallels are made with other interventions – ‘If you don’t believe contraception or sterilisation are part of the modern practice of medicine, don’t become a GP.’ Ethical relativism, whereby we are at liberty to apply personal values to controversial issues (such as AD), is heavily criticised. We must provide what is lawful, either personally, or by effective and timely onward referral. Savulescu can be seen summarising this view in an interview within this article.

More accommodating views have been aired. Roger Trigg, although clearly in favour of a doctor’s right to object, emphasises that a spectrum of opinion must be catered for in a reasonable, liberal world,

Physicians and others should not be coerced into involvement of any kind in what they regard as wrong. Such coercion goes against the very principles of liberal democracy. Conscience matters. Reasonable accommodation should be given to those whose moral judgment may be at variance with prevailing professional norms’

Peter Brindley, writing in the Canadian Journal of General Internal Medicine, also urges compromise, but insists that patient welfare must at all times be paramount,

‘We believe that it is appropriate to provide some ability to opt out. As such, it is appropriate that there be flexibility within both the MAID legislation and within regulations from provincial medical colleges. However, opting out cannot mean abandoning the patient. Conscientious objection is also not an acceptable excuse to avoid any medical interventions that are complex or time consuming or poorly recompensed, or legally perilous.’

For the practicing clinician, these highly charged arguments are useful, but also bewildering. What is right? There is no absolute right, obviously, but as employees of the state (assuming UK practitioners will be working in the NHS) we would need guidance. Although we are all capable of developing our own views based on the evidence that we read, we are accustomed to seek, and be steered by, consensus opinion. We refer to guidance for everything from the management of pulmonary embolism to referral thresholds for in-vitro fertilisation. Until NICE passes its judgment on a new treatment, there is often no obligation for Trusts to provide it all. AD would require the same rigorous assessment of evidence and cost, I presume.

This is all speculation, as AD is far from legal in the UK. Perhaps it will never happen. Despite being asked the question several times, the UK parliament seems settled in its opinion that things should stay as they are. The courts however, keep asking parliament to consider what is, to many, an unsatisfactory state of affairs. If things do change, if the incremental progress made by people like Noel Conway finally tips the balance, we might benefit from rehearsing some of the arguments that Canada has had to work through.

 

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Other blog posts on AD can be found here:

A pre-publication version of my article in Clinical Ethics, ‘From empathy to assisted dying: an argument’ can be read here.

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On the bank of the Rubicon: reflections following a defeat

19th-century illustration, "Caesar crossing the Rubicon." Romans under Julius Caesar crossed the Rubicon River from Gaul into Italy in 49 B.C. Caesar, in breaking Roman law by leading his army back across the river towards Rome, uttered "alea iacta est" ("the die is cast). Thus the expression "crossing the Rubicon" has come to suggest an action that cannot be undone.

Julius Caesar crossing the Rubicon, 49BC

 

Moves towards legalising assisted dying (AD) screeched to a halt yesterday with an overwhelming majority voting against its progress in the Commons. Despite several attempts to change the law over the last two decades our democracy appears set in its opinion that things should stay as they are. For those who support AD this is a disappointment, but it is also an occasion that prompts us (me, anyway) to reflect on why we hold views that differ so significantly from the democratically expressed the opinion of the country as a whole. Holding a minority view becomes uncomfortable after a while. It makes you worry that there is something you’re not seeing in the issue.

 

Of course many would contend that Parliament does not represent the majority of opinion; numerous polls have shown that over 70 or 80% of the general population support a change in the law. However, as someone living in a democratic nation, one has to respect and of course abide by a decision made in Parliament. At some point, surely, it is time to shut up and go with the flow. Yet the question remains – why do they keep throwing it out?

 

Listening to or reading the arguments voiced in parliament provides lots of answers, but when logic dictates that the law must be changed because the law as it stands does not work, we must seek to understand what appear to be the ‘illogical’ reasons. Illogical sounds pejorative – perhaps I mean speculative, emotional or even spiritual.

 

The dominant reason appears to be fear for the vulnerable; concern that some who are approaching the end of life will develop the sense of being a burden to their loved ones, or, more malignantly, that those around them will exert subtle pressure to ‘get on and die’. This is pure supposition, and I am not aware of any evidence that vulnerable people have been forced into premature death elsewhere.

 

There may be religious objections, but they do not appear to ride high in the debate. Perhaps those with strong religious convictions are wary about displaying them, but produce arguments of equal power to achieve the same aim, that of blocking progress. This may be the ethereal, subtle concern that life will somehow become less valuable if we allow the state to get involved in its termination before nature’s own, often cruel, design. This is the ‘Rubicon’ that is spoken of – the river crossed by Caesar on his way to Rome, making war with Pompey inevitable.

 

The moral axiom that one human should do nothing to hasten the death of another is indeed powerful, but in my mind does not stand up to scrutiny when people such as Tony Nicklinson are forced to starve themselves in order to achieve their goal. The objection is powerful because it raises the spectre that we will slide into some sort of Boschian hell where life is cheapened. The unknown is frightening. However, looking at societies in which well regulated AD law has been developed (Oregon, for example) should serve to reassure us.

 

Civilised society is based, among other precepts, on respect for life and the absolute taboo against ending it (excepting, of course, war, the threat of terrorism and until fifty years ago, capital crime). Yet those people who desire assistance in dying (a prescription and nothing more, as stipulated in the Marris Bill) are very confident that this generalised respect is misapplied in their own individual cases. They have decided that their lives are no longer endurable and it is actually disrespectful of life to deny them the option of AD. They would never say that their lives have diminished in ‘value’, for all that they have done previously – friendships, relationships, actions, achievements, dreams and thoughts still stand – but if they feel that that life is no longer endurable why should respect for the value of human life in general stay the hand of a person who is actually experiencing the final weeks or months of a single life?

 

Are proponents of AD somehow different? Are we missing a cerebral circuit? Have we developed a hardening of the sensorium, such that we no longer value life? Are we too pragmatic? Are we lacking spiritual depth? Are we blithely presumptuous about the protections given to the vulnerable? I suspect none of these things apply, yet our views are still outside the will of society (as expressed in Parliament).

 

We are unlikely to change our minds. And next month or next year someone will help their loved one die. If they acted unselfishly and are seen to tick the exemption criteria set out by a previous Director of Public Prosecutions, they will not be prosecuted; the unsatisfactory law that we have been left with will turn its face. Others, with resources, will go to Switzerland, bypassing our laws altogether. One or two will mount new legal challenges, and they or their relatives will articulate familiar arguments in newspapers or bulletins. But it would seem that for now that the momentum has been lost, and all that we can do is examine our convictions and ponder this gap between the ‘common’ will (as reflected in polls) and the decisions made by our representative in the commons.

 

An unacceptable choice? The case of Gill Pharaoh

Gill Pharaoh-as-a-nurse

The assisted suicide of Gill Pharaoh, a retired palliative care nurse who feared the onset of frailty, causes me great confusion as a proponent of assisted dying. The moral arguments for and against such a death are inevitably confused with those related to physician assisted dying (PAD), although the circumstances are entirely different. The PAD ‘purist’, who supports the right of terminally ill people to choose the time of their death, will be tempted to dissociate themselves from Gill Pharaoh’s case. Her choice has nothing to do with PAD.  She was not terminally ill. Society’s horrified reaction to it might spoil the recent, early progress made in the Houses of Parliament towards the legalisation of assisted dying. She would not have been served by the proposed legislation. Let us disown her eccentric story – (indeed, her partner reported that she began to plan her death at the age of 30) – it does not belong in the saga that is society’s ongoing tussle with the idea of assisted dying.

I don’t think this separation is intellectually honest. There is an overlap. The fears that drove her to seek a planned death before she was changed by frailty are similar to those that might drive a terminally ill patient to PAD. They are reduced quality of life, pain, dependence on others and perhaps (although this is morally questionable) concern about being a burden to others. Cancer or other terminal illnesses bring such fears and complications, and because the condition is inexorable it appears to society that it may be morally justifiable to open the door to unnatural death in order to escape those consequences. Ageing however, although quite capable of bringing similar burdens, is not reason enough to choose death. To choose death to avoid older age appears… what? Cheating? Weak? Weird? We know that old age can be dignified, pleasant and full of value. Opponents of unnatural death describe instances of lives re-evaluated after periods of suffering and despondency; or how enhanced support has allowed pleasure and satisfaction to be accessed despite ill health and deteriorating function. They are offended by the idea that people can choose death because (as in the case of Gill Pharaoh) a dose of shingles resulted in neuralgic pain, tinnitus plagued social interaction and fatigue led to hours spent sleeping or resting in the afternoons. It appears to offend the human condition. Life is suffering, choosing death to avoid suffering is an abnegation.

Is it wise to even consider the relevance of Gill Pharaoh’s choice to the case for assisted dying? It may not be, and the purist can easily ignore it, but it would be dishonest of me not to tackle it. For there is a common essence, and it is autonomy. For me, it is respect for autonomy (where it has no detrimental effect on others) that justifies PAD. Should terminal disease augment the power that society lends to a person’s autonomy, such that death can be chosen before death would naturally occur, while non-terminal disease – perhaps associated with similar suffering – should not? What’s so special about terminal disease? These are questions for society and law-makers. Terminal disease presents legislators who are considering the legalisation of PAD with the opportunity to alleviate suffering and respect autonomy without actually creating death, only moving it forward in time. It feels acceptable. To legalise the kind of choice Gill Pharaoh made feels unacceptable, because doing so would bring death into a situation where it would normally have no place. It feels like suicide, plain and simple.

Supporters of PAD need to consider how to discuss cases like that of Gill Pharaoh. Do they disown or embrace? If the latter, do they risk accusations of passively condoning the slippery slope, or the Dutch trend to assist those who are literally ‘tired of life’? We are at a critical juncture in the UK. An Assisted Dying Bill is making its way through the Lords, after an abortive attempt last year (1st reading was on June 4th 2015). Supporters do not want to see the arguments around Gill Pharaoh’s choice feeding into general criticism of the Bill. Thus, her choice will remain an example of eccentricity, and not one to be emulated or encouraged. This approach may not be intellectually honest, but it is probably necessary.

 

[‘My final night with partner before she ended her life’ – audio, Radio 5 Live shorts]

Other posts on Assisted Dying

Thoughts of a Lord on the eve of a debate

— Announcement —

Welcome to the blog. Here you will find 100 posts exploring aspects of medicine that have preoccupied or challenged me during training and the first 3 or 4 years as a consultant.

I began to write in August 2012, and managed, against expectation, to produce one post a week for two years. I am now giving it a rest, although I’m sure I will come back to the blog when an observation, scandal or ethical dilemma grabs my attention.

I have collected and published these posts in three volumes, the most recent of which is ‘A Face to Meet the Faces’.

Thank-you for your support. I’ll announce any new posts via Twitter as usual.

 

 

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oOo

 

 

thoughts of a lord

Forgive the impersonation.

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I’m not a true expert on assisted dying, but have become something of one with all the petitions, emails, personal representations and evidence summaries (collated by my excellent assistant). Recognising that care and compassion are abundant on both sides of the argument, I began to focus on the objective. Harrowing and personal stories are persuasive, and cannot be dismissed, but it is my duty to look up from individual tragedies and forward to the future where harms may arise. But what harms?

 

I am persuaded that there has been creep in the most liberal nations, where euthanasia is practised. I am persuaded that life may have become a little cheaper, and, dare I say it, a little less sacred in those places. But Falconer’s Bill isn’t about euthanasia, it is about patients taking fatal doses at the time of their own choosing. Doctors will do nothing more than facilitate the getting of the drugs, and sometimes the administration. Am I being naive here?

 

Can I be sure that the system will protect those who might not have requested AD if were not for the vulnerability of their position or the nudges and comments initiated by relatives, carers or unscrupulous others? Will there be a risk of subtle coercion over many weeks or months that ultimately drives a patient to request AD? I am not persuaded of that. A doctor involved in the assessment should question hard a patient, or a family unit, when a request seems to come out of the blue or appears inconsistent with prior impressions. Can I be sure that not one single such instance will occur? I cannot. There are no certainties in law, medicine or human behaviour.

 

And what of those doctors? They will be involved early on, when assessing a patient’s ‘settled intention to end his or her own life’, and when looking around the patient to ensure that there has been no familial coercion. Can we trust them? They are not perfect. Some are downright poor. But I do not see poor doctors leading to a lack of safety here; more likely, the poor doctor would fail to allow a patient the opportunity to discuss AD at all.

 

Will patients feel ‘guilted’ into choosing AD? I know of no evidence that they have done elsewhere, although I did read something to suggest that depressed patients are more likely to choose it. Depression, they say, is treatable. I might counter that depression is not surprising, and is not likely to be reversed in this context. I don’t mind that part of a patient’s motivation might be the fear of becoming or continuing to be a burden…that is part of the personal burden of illness, in my view. But the drive to have an assisted death has to come from the patient.

 

I seem to be talking myself out a Yes vote.

 

But wait. We must move forward. The supreme court has told us as much – admittedly in relation a different group of patients, those without terminal illness who actually require the physical assistance of a doctor or carer to do the deed. Nevertheless, we cannot stay where we are. The line, which has hitherto stopped doctors facilitating death in any circumstances, must be crossed at some point. If not this year then next, or the year after that. That much is clear to me. I am not comfortable with it, I would expect no-one to be comfortable with it, but to resist the move to patients being assisted in the organisation of their own life and death seems over-dogmatic to me.

 

Unencumbered by religious faith, I do not have to factor in the intentions or opinions of a overseeing creator. I feel for those of my colleagues who do, but am interested by the intervention of a retired archbishop. The ranks of the religious are by no means aligned. I am far more alarmed by the ranks of palliative care specialists. These doctors have dedicated their professional lives to the care of the dying, and their opinion must be respected. I don’t know any who support AD. Perhaps some do but are nervous about being seen to support something that seems contrary to the prime purpose of providing comfort and quality in life. But I am a little frustrated too, because I don’t see why palliative care cannot segue into AD if comfort cannot be provided. Why should a patient lose the option of AD just because they submitted themselves to the care of a group of doctors who are strongly opposed? I do not like the thought that a patient in a hospice might be barred from seeking AD, or might have be discharged in order to pursue the option away from the disapproving eyes of his or her palliative care team.

 

So it seems I’m in favour after all. But I will listen to the arguments, even though I have probably heard them before. There will be emotion, which must be allowed to touch one, but I will try to maintain the objectivity of the law maker. There will be thinly disguised religious motivation, which I must try to respect because I respect the people who are speaking. And there will be reassurances, that the slippery slope is illusory and the safeguards are adequate. I will vote in favour…but, on the threshold, I cannot guarantee that something will not hold me back. A sudden chill that I am belittling the value of existence and shattering the previously inviolate principle that human life should not be taken. I cannot guarantee that as I act to vote in favour, glimpses of other lives, wasted due to mankind’s failure to recognise life’s value – in battle, in innocent planes over war zones, on Middle Eastern beaches – will hold me fast and change my intention. I just can’t say. A vote like this is, for all the evidence one hears, is an instinctive affair.

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His burden

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I knew George would be the first to ask. He had heard about his diagnosis a week before the vote, and although he had never raised the subject with me (there was no need), I just knew he’d be the one. Metastatic oesophageal cancer. 78 years of age, but ‘biologically’ 65 – busy, reluctantly retired – until disease began to excavate the contours above his strong jaw.

I prepared myself for his questions as I drove to the house. In fact I prepared my defences. Never a great supporter of Falconer’s Bill, I recognised my duty to engage in the process of Assisted Dying if that was what my patients wished. I had already decided that I would not be one to wash my hands of it, to pass it on to more willing colleagues. If it was legal, if it was right – for my patients – I would sign the papers. But not today…I didn’t want to commit to such a process today.

He met me at the door. The ostensible reason for my visit was to assess him for chest pain that had come on overnight. The tumour had been stented ten days earlier, and I had told him to expect some discomfort. He was feeling better already, he quickly informed me. I set myself for a quick turnaround but he ushered me to the visitors’ chair. Then he got to the point.

“Paul,” (he had always used my first name) “I want to ask you something.”

“Go ahead.” And I knew.

“This assisted dying law. Will you promise to support me, if I choose it?”

“Well George, it’s only just been voted through, there’s a long way to go. I haven’t looked into all the details yet…”

“It sounds simple enough to me, you must know the criteria. Terminal diagnosis – yes. Less than a year – yes. Settled opinion – absolutely, I was settled on it even before I got cancer. And two doctors.”

“You seem to have decided very quickly George. You’re alright at the moment, aren’t you? Swallowing better. A bit of liquid morphine.”

“It’s knowing Paul. Knowing before it gets hold of me. I don’t want to start all this when I can barely get about, or barely talk for that matter.  It’s a high tumour, it might even touch my windpipe, the chap at the hospital said. That’s if the liver doesn’t get me first.”

“Perhaps I should record your opinion, put it in the notes, and wait…see how it goes.”

“It will not go well Paul. It is naïve to expect a good death.”

“Why? The hospice have already been in touch. You’re visiting next week. They’re great there. I go myself every other week to see patients.”

“I know. But I want to die before my symptoms are bad enough to require a hospice. They are reactive.”

“I’m not sure they would agree.”

“No disrespect, but they are. When I get bad they will put me on the list, when I feel awful they will increase the doses. By dying at the time of my choosing I avoid a trial of symptoms. I am dying already, look at me. But now I can control the timing…with your help.”

“Control. Isn’t that the point George? You don’t want to lose control.”

“Precisely. So what?”

“Is that a strong enough reason to ask me help you die?”

“Ah, Paul! I do worry about your feelings in this, but not quite enough to stop me asking. You’ll get over it.”

“But I need to be sure that I am assisting your death for the right reasons George. These…existential motives, you might call them, I’m not sure they are what the Lords had in mind when they passed the Bill.”

“I don’t think they were trying to cater for specific symptoms Paul. My distress is loss of control and autonomy, it is seeing those around me grieve while I still live, it is the determined stoicism in Lucy’s eyes that I don’t want to witness for longer than I have to.”

“You worry about Lucy?”

“Of course! It’s a huge burden on her. Huge. Physically, mentally.”

“That is a problem for me George. I cannot support assisting your death if it is primarily to relieve the suffering of another. It’s too…unclear, too…complicated.”

“We are complex Paul, the dying. We are at our most complex before the actual dying has commenced, but after we have been made aware that it is coming. There is no great clarity in my mind, let me tell you, except over this one point.”

“But George, it’s got to be in the context of unendurable pain and suffering. If you remain comfortable I, we, will not find a second doctor who is willing to sign the papers…”

“Aren’t pain and suffering subjective? It’s for me to say when they are or aren’t so bad. Not for you to tell me. And part of my pain is my family’s pain, and the thought of their increasing pain as I am increasingly diminished. You can’t isolate a dying man’s symptoms from their family. Lucy will be with me, and she has told me it is also what she wants.”

“I’m sorry George. Perhaps it’s too soon for me, as a doctor.”

“I understand that. But you will come back to talk about it again? Won’t you? You’re not turning away?”

“Of course I’m not. Let me think about it.”

 

oOo

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The day assisted dying became legal: choices

As a supporter of assisted dying (AD) I ask myself  – ‘What will I actually do if it becomes legal?’ I haven’t travelled to Oregon or Washington state to see how it works, nor have I talked to doctors or nurses who are involved, but I think it is important to anticipate one’s response. After all, a recent NEJM paper described in a routine, academic, matter of fact way, how a ‘Death with dignity’ programme was rolled out in a Seattle cancer centre. If AD is legalised in the UK, any doctor who works in the field of cancer or palliative care will be touched by it in some way. The degree of involvement will depend on some of the thought process that I explore in this post.

For those who oppose AD it will be relatively simple – if a patient asks about AD you will make it clear that you do not ‘do that’. But it will be necessary to refer the patient on to a colleague who does. To refuse would be to obstruct the patient’s access to a legal therapeutic option. There are parallels with abortion here.

What about those who are ambivalent? This is probably the majority. When the day comes, will it be necessary to make a choice, to be an ADer or non-ADer? Will it be necessary to register that preference, for the sake of transparency? Perhaps it will be possible to avoid making that choice for a few months, a year…until a patient asks you to help them. If you are not completely ‘anti-’ but you have no wish to be involved in assessing them and certifying the terminal nature of their illness, you will again have to refer on. Over time you may be persuaded by the conviction of your patients, and begin to recognise that by referring on and leaving such distasteful tasks to others you are separating yourself from the patient’s journey too forcefully. You might conclude that it is cowardly, in a way, to ‘wash your hands’ of them when the going gets tough and they ask for your signature on the piece of paper, the document, the booklet…whatever it is. You may review your position, and change, finally accepting that ‘Yes, quite a few patients have asked me now, AD is a fact of life, why should I make their progress any more difficult than it is already?’ Others will remain intellectually neutral, but for good reasons they will continue to maintain clear blue water between their own practice and AD. That will be perfectly understandable. I can foresee many doctors adopting this approach.

And what about doctors like me who instinctively support AD? This is where I get nervous. If, a month after the law is passed, a patient whom I have recently diagnosed with terminal cancer (a common enough event) sits down in my clinic and says, ‘When the time comes I want an assisted death. How do I arrange it?’ – I will have to do everything in my power to facilitate it. To do otherwise would be hypocritical. So, I might have to decide that I am happy to be one of the signatories, but not so happy to prescribe the fatal dose. Or I might decide to push myself through that discomfort barrier, propelled by a self-imposed reluctance to abdicate my professional responsibility to care for the patient, and volunteer to be physically involved in the prescription and administration of the fatal dose. If I do that I must prepare myself for the experience of being with someone who is not imminently dying, who is still independent, in the last hour of their life. I will have to remain strong and unflustered (the last thing they will want to see is a nervous clinician) as they arrive, confirm their identity, take to a bed, gather their family around them, reach for the ‘milky drink’, and expire. Am I ready for that? Are you?

Assisted Dying and The Christian Medical Fellowship: The Mercy Paradox

In the Assisted Dying (AD) debate the opinion of the Christian Medical Fellowship matters.  As an important member of the Care Not Killing Alliance (CNK) it provides solicitors and counsel to oppose changes in the law – the case of Tony Nicklinson being the most recent example.  After that disappointing judgment, Dr Andrew Fergusson wrote a guest blog for CMF in which he congratulated the court on their ‘compassionate, but dispassionate’ approach.  CNK, through counsel, intervened in Tony Nicklinson’s case, presenting a legalistic argument that stayed away from unpredictable matters of emotion, suffering and frustrated autonomy.  This is understandable – what are the courts for, if not to provide an arena in which precedent can be examined, principles tested, and the wisdom of dusty tomes scrutinised in the context of modern medicine?  CNK won the day.  Tony Nicklinson’s application, seeking legal protection for whichever individual volunteered to kill him, was denied. Mr Nicklinson had wanted his case examined in a court of law, and, according to Dr Fergusson,

     ‘That dispassionate discussion has now happened, and disabled people are all the safer for this welcome result.’

 

Tony Nicklinson’s reaction to the judgment was deeply upsetting; his pain was visible and audible. But his determination was undimmed: he refused food – and only the onset of pneumonia, treatment for which he was allowed to refuse, gave him any form of control over his fate.  His sadness must have presented a very human, emotional challenge to CMF members who were instrumental in denying him the judgment that he wanted.  Without pretending to understand their motives, I would suggest that the theoretical protection of vulnerable individuals from coerced, but legalised, AD was sufficient to salve a sense of guilt.  Policies and actions, however unkind they may appear on an individual basis, can be justified if the greater good is served.  Indeed Reverend George Pitcher, writing in a Daily Mail blog, stated that TN’s suffering was a  ‘…high but necessary price for a civilised society…’  This easy calculation, in which individual suffering is counterbalanced by future benefit, troubles me.  I want to understand how, in the here and now, a Christian can comfortably engage in a ‘dispassionate discussion’ while the subject of that discussion man suffers unbearably.

 

Dr Peter Saunders, CMF Chief Executive, has written the following:

     “The current law is clear and right and does not need fixing or further weakening. On the one hand the penalties it holds in reserve act as a powerful deterrent to exploitation and abuse. On the other hand it gives judges some discretion to temper justice with mercy when sentencing in hard cases. We should not be meddling with it.” [http://bit.ly/Rv3gvH

In the word ‘mercy’ we see a softening, an appreciation of the suffering that patients and their families are experiencing.  He appears to support leniency towards those who facilitate AD, but in ‘hard cases’ only.  The duty to punish an illegal act is tempered by the manifestly unselfish nature of the family’s motivation, and the suffering that is visible to all.

 

This leads to two important questions:  how do we define ‘hard cases’, and does a ‘merciful’ or lenient approach in such cases represent an implicit acceptance that AD is sometimes right?

 

There is no spectrum of ‘easy’ to ‘hard’ cases in the minds of patients and their families.  For them, all are desperately hard. In the eyes of society however, the difficulty of each case is probably related to visibility in the media (the way the story is told) and articulacy of the patient and their family.  If a compelling argument is put forward in favour of AD, the case becomes ‘hard’ in the eyes of the public and the legal/medical professions.  They are hard because we see the pain in their eyes, faces and words, and we respond as any human must, with sympathy.  The definition of ‘hard cases’ is therefore subjective, and cannot reasonably be used to decide who should receive mercy.  Perhaps we should accept that all cases are hard.  But if all cases are hard, shouldn’t all families or abettors receive mercy? And if all should receive mercy, the argument for legalisation has been won.

 

Guidance does exist to help to define which cases should be treated mercifully.  Following Deborah Purdy’s wish for legal clarification in anticipation of her husband’s involvement in her own death (from multiple sclerosis), the courts agreed that the law was not clear. The Director of Public Prosecutions produced a list of factors that would make the prosecution of a someone involved in AD more or less likely.  The six factors that reduce the risk of prosecution are:

            · The victim had reached a voluntary, clear, settled and informed decision to commit suicide.

            · The suspect was wholly motivated by compassion.

            · The actions of the suspect, although sufficient to come within the definition of the crime, were of only minor encouragement or assistance.

            · The suspect had sought to dissuade the victim from taking the course of action which   resulted in his or her suicide.

            · The actions of the suspect may be characterised as reluctant encouragement or assistance in the face of a determined wish on the part of the victim to commit suicide.

            · The suspect reported the victim’s suicide to the police and fully assisted them in their    enquiries into the circumstances of the suicide or the attempt and his or her part in providing encouragement or assistance.

 

Here then is a semi-formalised approach to the definition of ‘hard cases’. It is practical, individualised, and a sensible response to the steady trickle of hard cases that nature, in its cruelty, delivers to legal scrutiny.  This is the status quo by which CMF have stood so steadfastly. In softening their attitude to suffering they have accepted a compromise.  Such laudable détente represents a chink in the rather robust CMF armour that was on display during Tony Nicklinson’s case.  It is, I would argue, an implicit admission that AD happens, and that AD is sometimes right, sometimes the kindest option, sometimes defensible.  

 

I believe that CMF are having it both ways.  While opposing the development of a framework in which death can occur legally for those who clearly want it, CMF has accepted that families who help such patients die should be let off.   A merciful veneer softens a rigid adherence to principle.