The potential consequences of Assisted Dying legislation in Scotland.
Dr Robin Taylor, Emeritus Professor of Medicine and Consultant Physician
Introduction
If not during the present parliamentary term, then certainly in the next, Mr. Liam McArthur, MSP for Orkney, intends to table a Private Member’s Bill in the Scottish Parliament designed to facilitate Assisted Suicide (AS). To date, attention to this issue in the media has been sporadic. Occasional flurries of interest are stirred when well-known personalities such as Esther Rantzen enter the debate.
Even among professionals, interest in the possibility of a law change is subdued and patchy. Contractual obligations in the NHS prevent clinicians from commenting on healthcare matters publicly without permission. Even if permission is granted, there is a huge disincentive to making personal views public. In addition, and despite the fact that clinicians in favour of assisted dying (AD) are still in the minority, professional bodies such as the British Medical Association and the Royal College of Physicians of Edinburgh have moved to positions of neutrality. This means that presidents and chairpersons have no official position on the topic.
As a senior respiratory physician, my acquaintance with the issue is long-standing and precedes the possibility of a change in the law. I see patients with lung cancer or progressive lung fibrosis or advanced chronic obstructive pulmonary disease (COPD), all of which may result in an end-of-life experience characterised by progressive or disabling symptoms, notably shortness of breath or chest pain. Symptoms can dominate life for anything between a few weeks to 2-3 years. Who wants that? Palliative treatments – the use of opiates and other drugs – provide relief of respiratory distress and pain to most patients, but not all. Some patients simply do not get adequate symptom control, though this is often the result of limited access to relevant expertise. Longing for the struggle to come to an end is commonplace.
It is in this context that the present drive to legalise AS in Scotland is being made. Why? … Why not? you may say. What is to be gained by prolonging the life of someone who is beset by difficult-to-control symptoms, and whose life expectancy is measured in weeks or months? What indeed? It is not uncommon for medics to think, if not say “There are things worse than death”. And if a patient’s life is being extended inappropriately – for example in an Intensive Care Unit (ICU) – it’s not uncommon for nurses to think, if not say “Why are we doing this?” When eventually the doctors concede that the patient’s life is at its end, and treatment is withdrawn, nurses express their relief. Surely these instincts, expressed sotto voce among professionals, should be given more traction? The answer is “yes”. Then surely Mr. Liam McArthur’s Bill to permit Assisted Suicide is along the right lines? But the answer is “no”.
I believe that far from being on the right lines, conceding that healthcare professionals ought in some circumstances to facilitate or procure the death of a patient as their primary intention, crosses a red line. That red line has existed for millennia and is there for good reasons.
My opponents will argue that this is unnecessarily cruel, and that in a humane society, it is unacceptable. In this article, I hope that I can justify the view that upholding traditional practice is not outdated, and that the law as it stands ought not to be changed.
Ancient Wisdom
Hippocrates wrote his guiding principles for medical ethics around 400 BC, and they have been central to ethical medical practice ever since. Until the mid-20th century, commitment to abide by them was affirmed on oath … the Hippocratic Oath … by every doctor. There is a public perception that the Oath is still sworn by young graduating doctors, but that is not so. There are now more modern – and acceptable – alternatives. But usually, the key elements remain.
The Oath has stood the test of time for good reasons. In it, Hippocrates established the principles of medical confidentiality and non-maleficence. The latter refers to deliberate medical harm. He also established that doctors should never be the agents of death. The key clauses in the original (translated from the Greek) are: “Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course”.
It is the second of these clauses that is perhaps the more important. It states simply that death should never be the goal of treatment, and that even the possibility ought not to be discussed. Facilitating death as a primary clinical objective has thus been out-of-bounds for 2400 years.
Modern Medicine and Life Expectancy in the 21st Century
It seems paradoxical that in an age when medical technology and treatments are more advanced than at any time in human history, the plea for AD should be intensifying in many Western countries. Permissive legislation has already been passed in Belgium, the Netherlands, Switzerland, Colombia, Canada and some USA states including California and Oregon.
The legislative changes in these countries cannot be divorced from the profound changes that have taken place not just in healthcare, but also in Western thinking about medical ethics and the meaning and value of life.
It is not fashionable to cite what happened in Nazi Germany in the 1930s, when the meaning and value of life was wrenched away from its historic roots. What happened to the chronic sick and the disabled in Germany is regarded as too extreme, too aberrant, perhaps too shocking, to mention. But it happened. Although the ideological drivers for Nazi behaviour were indeed extreme, and quite different from what is being articulated about AD now, the desired end-point is no different: procuring death as a “solution” to human problems.
There are a number of factors in the 21st century that are driving this idea, not least the fact that, while now living much longer than ever before, most humans decay progressively before they die. However, in some quarters death is now being advocated as a “treatment” – how dystopian is that? The fact that an individual may wish for and consent to AD – sometimes out of understandable desperation – does not alter my judgment. Delivering death as a primary clinical aim is not an ethical objective.
Demographic Drivers: Longevity and Life Expectancy
As I write, the demographic hope of the 20th century, namely that average life expectancy would steadily increase, is withering. The 1980s and 90s were an era of unfettered optimism, incentivised by the prospect of ever-greater medical successes in preserving ageing human bodies. There was even a vogue for cryopreservation, not in hope of the resurrection, but of being defrosted, to be revived later when every ageing organ could be restored to full working order. These days are gone.
How we regard the value of a human life and of human suffering is shifting, in part because of the very successful demographic trends that have been achieved. We live longer and the ageing process is more extended.
The language with which the changes in life expectancy are described has also shifted, some would say realistically. The relatively recent concept of healthy life expectancy, sometimes described as disability-free life expectancy, is now distinguished from total life expectancy. Further, the value of human experience is increasingly measured in terms of a person’s capacity for personal fulfilment. Life is an experience after all and a good life comprises good experiences! Every lifestyle magazine sells that message. Against a background of societal narcissism, it is easy to understand why the criteria used to determine the value of a human life are shifting.
Understandably, healthy life expectancy is regarded as a priority. Improving the quality of life during the unhealthy years is still a parallel healthcare objective. But will that last? The simplest way to shorten the duration of unhealthy life is to end it altogether. We may not yet have reached the point where the difference between healthy and unhealthy life expectancy is a major consideration in health policy or the allocation of limited resources. But we are not far off.
Only recently, the Japanese film “Plan 75” depicted a dystopian future centred on Japan’s ageing demographic. The film focussed on an imagined society in which 75-year-olds – under the banner of free will – would be coerced through the use of propaganda into choosing AD. By so doing, they would be making a self-sacrificing contribution to the wellbeing of society! The idea is not entirely fictitious. In November 2023, the Dutch political party D66 drafted a Bill to give people aged 75 and over the option of having euthanasia if they felt they had completed life.
Increasing frailty or multiple co-morbidities, burdensome to the individual and his or her family, will steadily combine with increasing demands on the NHS to create an economic burden on younger tax-paying citizens. Eventually, this reality will permeate public attitudes and government policies regarding the value of health care, and most of all the value of health care at the end of life. This mindset may not be here yet, but in my view the trends in that direction will be facilitated by introducing AS.
The perspectives of each of us as individual citizens often give collective permission to changes in law and practise. A tipping point is reached. On this present topic, the proposed changes in the law on AS / AD appear sensible and even compelling. The opinion polls are favourable. When it was suggested to a 93-year-old – whom I know – that she might consider moving to a care home at an annual cost of £51,000 (she is comfortably well off) she was upset: “Give my money to my great grand-children. I have had my life”. How long will it be before that sentiment is not just personal but widely societal, and the cost of staying alive and unhealthy will be measured in British pounds and regarded as wasted money? We all experience pressure arising from cultural norms. The pressures to consider AS or AD are not necessarily going to be spoken out loud.
The dynamic tensions surrounding these issues are growing because, on the other side of the coin, the will to live is such a powerful motivating force both in individuals and in human society. The drive to survive is a natural instinct. Ernest Becker (1924-1974), an American philosopher and anthropologist, won the 1974 Pulitzer Prize for his book entitled “The Denial of Death”. He advanced the thesis that directly or indirectly, individually or corporately, every human endeavour is subliminally both death-denying and death-defying.
According to Becker, at the core of being human is the fear of death, and it drives us. Hence the defence industry, the food industry, the cosmetics industry, and above all the healthcare industry are about resisting and rejecting death and affirming and preserving life. Allegedly this is the psychological raison d’etre for modern medicine. I am not at all denying that compassion, kindness and the God-given motive to heal have been powerful drivers for the development of medicine in the Christian West. But at a particular level, Becker’s analysis makes sense.
The pinnacle of modern medical success is thus to be found where the efforts to defy death – and the resulting cost of healthcare – are to be found in the Intensive Care Unit (ICU). It can cost up to £2000 per patient per day. But wasted expenditure is not the most pressing issue, at least for now. The key issue is that in the pursuit of “success”, there are instances where human life is preserved too long. Suffering is made worse, not better, when death equals failure and survival is the paramount goal for clinicians and/or patients’ relatives.
Medical interventions in the ICU sometimes inflict their own kind of suffering. Often urged on by anxious relatives, efforts in favour of survival are intensified when a patient fails to respond to initial treatment. Treat more vigorously! The possibility that treatment might actually be futile is denied until the last moment. Declaring that “It’s too soon to tell” or “We must give the patient the benefit of the doubt”, the high moral ground is captured by enthusiastic interventionists. Later on, post-mortem, the claim that “we were only doing our best” is used to defend what was futile – but only when measured against a standard that insists that achieving survival is always paramount.
Make no mistake: these scenarios are exceedingly difficult for all clinicians, and even more so when life-saving technology is available and so often seems like a good thing! Rather, it’s the indiscriminate delivery of healthcare technology that causes harm. The fact that one way or another modern medicine eventually fails, lends weight to the arguments of those who advocate AS or AD, especially if a person’s quality of life is diminishing.
We actually live in a golden age of healthcare. High standards of nutrition and medical skills provide for a better-than-ever lifestyle and a longer-than-ever lifespan. The exciting – or is it disturbing? – truth about medicine in the last 70 years is that the opportunity to preserve life now verges on the miraculous – for example, by heart surgery or mechanical ventilation. This in itself encourages denial of the inevitability of death. But it follows that unrelenting attempts to preserve life come at great cost. To die at the end of a long hospital admission, particularly if achieving survival was always going to be a doubtful endeavour, is not usually “a good death”.
An equally disturbing truth is that even if heroic interventions are wisely set aside and palliative treatments are provided, these are not universally successful in alleviating end-of-life symptoms. It is this type of situation that is also a factor that motivates the advocates of AS or AD. Why should this person’s suffering be allowed to continue? Is it not cruel? If death is inevitable, and effective palliative treatments are lacking or not working, let’s limit the duration of suffering associated with terminal illness.
Death on Demand: The Slippery Slope
If the provisions of Mr. McArthur’s Assisted Suicide Bill could be limited to those for whom he has a stated concern, namely people with intractable or unbearable symptoms due to incurable disease, then the arguments against passing pro-AS legislation might be considered weak. After all, individual autonomy, a guiding principle in modern liberal democracies, should be honoured, especially when a person is suffering.
Would that it were so simple. Liam McArthur’s Bill (allegedly) provides for AS in patients deemed to be in the last 6 months of life and in whom physical suffering is unbearable. The reality is that any limitation to AS or AD that might be enshrined in law necessarily discriminates against others – who may be suffering just as much but will live longer.
Importantly, in jurisdictions where AD is already practised, unbearable suffering is not actually the primary reason for requesting it. In a Canadian study, among 112 patients, 59 (52.7%) gave loss of autonomy, 55 (49.1%) gave loss of ability to enjoy activities, and 27 (24.1%) gave fear of future suffering as the reasons for choosing AD. These are commonly held fears. Disease-related symptoms were given as the most important reason by 39.0% of patients with malignancies, 6.8% of patients with neurological diseases, and 28.9% of patients with end-organ failure.
If replicated in Scotland, and there is no reason to believe that they would not be, these findings would eventually be used to bring pressure on legislators to de-restrict the provisions of the Bill currently being prepared by Mr. McArthur. In fact, eligibility criteria such as a prognosis of six months or less, or unbearable symptoms, are actually both untenable and illogical. Prognosis regarding the survival time for a patient, or the judgment as to whether symptoms are unbearable, are frequently inaccurate on the one hand or wholly subjective on the other. In Oregon, strikingly, physical symptoms (e.g. pain, breathlessness and fatigue) at the time of being assessed were not rated as important in motivating the request for AD.
Restrictions in any legislation would be short-lived. Perhaps this is the intent? In Canada, legislation similar to that currently being proposed in Scotland was introduced in 2014, but was deemed unconstitutional by the Canadian Supreme Court four years later. The Canadian Parliament was obliged to redraft the legislation and the “right to die” was subsequently affirmed in law. It is difficult to accept that the limitations proposed by Mr. McArthur are sustainable. Proponents may point to Oregon as a good example of restricted practice, but it is what has happened in Canada that sets the standard.
There are three groups that would be affected in the fulness of time by any future AD or AS legislation in Scotland: the frail elderly, people with mental illness (notably those with suicidal ideation), and people with disabilities.
The frail elderly are admitted to hospital via Emergency Departments (ED) on a daily basis. They may live alone or they may come from a care home. Waiting times in ED prior to admission commonly extend to between 12 and 24 hours and give ample opportunity for patients to reflect: “I have had enough” or “I am a terrible burden”. The same thoughts might occur if their discharge is delayed (as it often is) while awaiting care home placement. If patients have had 2 or 3 admissions in the last year, or are among the 28% presenting to ED who are in the last year of life, then such thinking would hardly be a surprise. It is this reality that would become the basis for passing more permissive legislation (regarding AS or AD) in the future.
In Scotland, the Mental Health Scotland Act (2015) currently allows for the compulsory detention of a patient considered to be at risk of suicide. Medical practitioners are empowered to restrict the patient’s decision-making autonomy and even freedom. On the other hand, the Canadian MAID legislation (Medical Assistance in Dying) provides for assisted dying with active facilitation on the part of a practitioner. These provisions have recently been extended to include people with mental illness (although they are temporarily on hold as a result of now-aroused opposition).
What a contrast. The introduction of AS / AD legislation would result in very mixed messaging about suicide. In patients with a disseminated cancer or end-stage organ failure, the idea that “my life is not worth living” because my suffering is intractable may seem entirely reasonable. Assisted suicide would bring an inevitable death forward in time. But “my life is not worth living” and “my suffering is intractable” might be equally valid in the minds of some patients with mental illness.
Currently, with treatment, it is intended that the negative mindset of a patient with mental illness will prove to be temporary – hence compulsory admission. Suicide prevention strategies are based on this hoped-for outcome. But this becomes very problematic if “my life is not worth living” is deemed legitimate for some and not for others. In Scotland, the provisions of Equality Act (2010) would likely conflict with any restrictions contained in AS legislation.
Lastly, in an era when long term conditions are lasting for longer, and health and social care are becoming increasingly expensive, vulnerable groups are specifically threatened by the future consequences of and AS / AD legislation. People with disabilities fear that AD as an individual choice will evolve into a societal pressure to make that choice. My correspondence with several organisations in Scotland confirms these views.[1]
Conclusions
The imperative to relieve human suffering and preserve human life are the central goals of good medicine and always have been. They belong together. The successes of the last 70 years in particular reflect the concerted endeavours of nurses, doctors, and in the background, researchers.
It seems cruel that success is only temporary. But we all die. The inevitability of dying and death can only be postponed not abolished, a truth that amounts to a taboo topic for most of us. The Psalm says: “Teach us to number our days that we may earn a heart of wisdom” (Psalm 90: 14). In Deuteronomy we also read: “Today … I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live” (Deut. 30: 19.)
The Christian affirmation that there is life beyond this life has ebbed from our Scottish cultural consciousness. The desire for fulfilment in the here and now powerfully characterises our societal values. If in the face of ageing and disease, when that fulfilment cannot be achieved, then should we drift into believing that we ought to take the initiative and terminate one another’s lives? At our peril.
Excruciatingly, the most significant pressures about living and dying arise in individuals whose circumstances are worthy of every ounce of compassion and care that we can mobilise. But we cannot agree to breach a boundary that has stood the test of time for good reasons. We are back to the Hippocratic Oath. The introduction of Mr. McArthur’s Bill would present us with the beginnings of a seismic shift away from believing that a human life has intrinsic rather than relative value, and that human life ought not to be terminated at the hands of other human beings – despite seemingly valid circumstances or motives.
It is too dangerous, and even Liam McArthur knows it. The prospect of AS or AD is not so much about a slippery slope as a cliff edge. Why else would Mr McArthur strenuously point out the safeguards in his proposed legislation, if substantial risks did not exist? At a time when the number of over-75s is set to rise steadily, the duration of unhealthy life expectancy is increasing, and the resources available for healthcare have plateaued, it would be a tragedy if the value of a human life were to become a relative entity and not a fundamental characteristic. The risk of that happening is in our hands to decide.
There is a third way. It is that palliative treatments and services should be central and not peripheral to the provisions of our NHS, and should be expanded significantly so that patients are not abandoned, longing for death because of unremitting symptoms. This is not an expensive option, but it is admittedly more expensive than opting to prescribe lethal drugs. Re-balancing the priorities and provision of in-patient services is required. When faced with a patient in the last year of life, the imperative should be to avoid “one size fits all” curative interventions, and rather, opt for what is appropriate in the context of the patient’s prognosis and their wishes.
Historically, hospices (some of which in Canada have had their funding withdrawn with the advent of MAID) have been and still are only partly funded in the UK. They cater for only 4% of dying patients. That may have been valid in 1948 (when the NHS was founded) or even in the 60s and the 70s, but it is obsolete now. A radical change is needed: supportive care and palliative treatments should be as mainstream as curative interventions.
For many patients, “curative intent” is inappropriate and may even be harmful. For many doctors, it is too often their narrowly focused goal. How often do family members emerge from visiting a loved one in hospital with the question “Why are they doing this?”. Why else are most litigation cases associated with a patient who has died in hospital characterised by over-treatment and not under-treatment?[2]
The approach to patient care that is emphasised in hospices needs to be mainstream, co-equal among the range of services provided in our acute hospitals. Some Health Boards have Maggie Centres, Marie Curie hospices and Macmillan Nurses, but they are “other” and depend on donations and discretionary funding. These services ought not to be at the margins.
Training in palliative care should be established in all ED, medical and surgical programmes, not least Oncology. It is no longer valid that palliative care should be someone else’s business. Expertise needs to be more widely distributed and should be normative in post-graduate training for all the major specialties.
Let me be clear. I am committed to the wellbeing of patients who suffer from irreversible conditions. Suffering matters. A person’s end-of-life experience matters. These should never be the result of professional neglect or misguided priorities.
But for the sake of us all, and the lasting integrity of the NHS, the question “Is the doctor going to offer assisted dying? Should I ask?” should never be in a patient’s mind before a clinician approaches their bedside, now or in the future. It should never be a question in the minds of relatives. Legitimising the question would seriously undermine the intrinsic security of medical ethics as we know it. The boundary needs to remain intact. Hippocrates was right.
Note from the author:
If this article aligns with your own views, please write to your MSP to express your concerns about the proposed Assisted Dying legislation. You are welcome to use any of the material contained in this article without attribution.
References
Dame Esther Rantzen: I would like champagne and caviar before Dignitas death. The Independent, 19/2/24. https://www.independent.co.uk/news/uk/esther-rantzen-dignitas-dignity-in dying-childline-b2498552.html
Kantar publications. BMA survey on physician-assisted assisted dying. 2020. https://www.bma.org.uk/media/3367/bma-physician-assisted-dying-survey-report-oct-2020.pdf.
British Medical Association, 2021. https://www.bma.org.uk/advice-and-support/ethics/end-of-life/physician-assisted-dying
Royal College of Physicians of Edinburgh. 2023. https://www.rcpe.ac.uk/college/assisted-dying-terminally-ill-adults-scotland-bill
D66 adjusts “completed life” Bill for longer guidance before assisted suicide. NL Times. 7 November 2023.
Medical Advisory Group to Mr. Liam McArthur, MSP. https://www.assisteddying.scot/wp-content/uploads/2022/12/Medical-Advisory-Group-Report.pdf
Wiebe E, Shaw J, Green S, Trouton K, Kelly M. Reasons for requesting medical assistance in dying. Can Fam Physician. 2018 Sep; 64(9): 674-679. PMID: 30209101; PMCID: PMC6135145.
Thomas R, Pesut B, Puurveen G, Thorne S, Tishelman C, Leimbigler B. Medical Assistance in Dying: A Review of Canadian Health Authority Policy Documents. Global Qualitative Nursing Research. 2023;10. doi:10.1177/23333936231167309
Clark D, Armstrong M, Allan A, Graham F, Carnon A, Isles C. Imminence of death among hospital inpatients: Prevalent cohort study. Palliative Medicine. 2014; 28(6): 474-479. doi:10.1177/0269216314526443.
Canada shelves plan to allow medically assisted dying for people with mental illness. BMJ 2024; 384: q271. doi: https://doi.org/10.1136/bmj.q271
British Columbia Government News. 2023. https://news.gov.bc.ca/releases/2020hlth0047-000328#:~:text=Fraser%20Health%20will%20stop%20funding,in%20dying%20(MAiD)%20policy.
Email: rtaylorscot@gmail.com
Word count: 4,400
Date: 2 March 2024
[1] Better Way Campaign; Disability Equality Scotland; Glasgow Centre for Inclusive Living; Glasgow Disability Alliance; Inclusion Scotland; Our Duty of Care; People First; Self Directed Support Scotland.
[2] Personal communication to the author. NHS Scotland legal department. 2022.