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’.
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.
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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