Rapid Response letters published in the BMJ

In response to an article in the British Medical Journal entitled ‘Assisted Dying: a question of when, not if’ the following rapid response letters were published:

13th September

 

Dear Editor

The editor in chief of the BMJ calls on professional organisations to adopt a neutral stance on assisted dying as “a decision to legalise assisted dying is for society and parliament to make.”(1) However, rather than heeding her own call, she and her editorial team have adopted a strong campaigning position in favour of legalising a medicalised model of assisted dying in which “it is doctors who will counsel and refer patients – and assenting doctors who will do assessments and prescribe the drugs”(2). It is difficult to see how doctors or their professional organisations could be neutral about such a role.

Despite the BMJ’s strong campaigning stance, the editors appear remarkably uninterested in addressing the assumptions and consequences of the medicalised model they advocate. There is a strong body of evidence demonstrating that the desire to hasten death in those with advanced and terminal illnesses is highly complex, multidimensional and changeable, and strongly influenced by psychosocial and existential issues, such as feeling a burden on others, hopelessness, depression and lack of social support (3) (4) (5) (6) (7) (8); it is not fundamentally different to suicidal ideation in other circumstances. However, medically assisted dying requires doctors to respond in a radically different way to a patient expressing the desire to end their life depending on the presence or absence of an eligible medical condition (in Baroness Meacher’s Bill currently going through the House of Lords, a terminal illness with a prognosis of less than 6 months – with experience from Canada, the Netherlands and Belgium indicating that this arbitrary criteria is unlikely to survive legal challenge, and would subsequently be extended to include a much wider range of illnesses and disabilities). In the absence of an eligible condition, a doctor is expected to support their patient through their suffering: addressing issues amenable to intervention, helping them to rediscover hope, meaning and purpose, and doing everything possible to prevent suicide. The doctor demonstrates that they value their patient’s life at a time when the patient is struggling to do so themselves. In contrast, a doctor would be expected to respond to a patient with an eligible illness or disability by assisting them to end their life – validating their patient’s assessment that their life is no longer worth living, and legitimising a negative societal view about the value of life lived with illness and disability. While “counselling”, “referring”, “assessing” and “prescribing” sound like familiar and innocuous medical tasks, acting as society’s arbiter of what makes a life worth living is not.

The editors try to reassure their medical audience by stating that individual doctors could opt out of personal involvement in medically assisted dying. It is true that the Meacher Bill has a provision for conscientious objection, and even if medically-assisted dying became rapidly normalised, as is starting to happen in Canada, and opting not to be involved became viewed as “denying patients the medical care that these patients are entitled to” (9), healthcare professionals could retrain in areas that do not involve contact with eligible patients, or even leave their professions altogether. However, there is no such reassurance for those with the illnesses and disabilities that would make them eligible for assisted dying, who would not be able to opt out of being offered an assisted death (and opt into the suicide prevention approach that other patients receive) if they express the desire to end their life during a period of despair. Similarly, wider society would not be able to opt out of the further devaluation of the lives of those who deviate too far from an apparently independent, economically productive ideal. In jurisdictions where medically assisted dying has been legalised, the consequences are already being seen. In Oregon, official data document progressive increases in both the number and proportion of patients who receive a medically assisted death because of concerns about being a burden on others (10). And the United Nations special rapporteur on the rights of persons with disabilities has reported serious concerns about people with disabilities in Canada being pressured to seek medical assistance in dying instead of receiving viable care options (11).

If society and parliament decide that mentally competent adults should be assisted to end their lives at a time of their choosing there is no practical reason why the medical profession should be involved, as provision of a standardised lethal dose of a toxic chemical for oral self-administration does not require any medical knowledge or skills. If the medical profession is not to be involved, medical organisations may choose to adopt a neutral stance. Removing the legitimising role of the medical profession would expose the discriminatory assumptions behind using illness or disability to determine how society should respond to a person’s expressed desire to end their life. This would facilitate a clearer discussion about the potential societal responses to people with mental capacity and a consistent desire to end their life prematurely, and a more open evaluation of the associated ethical and practical trade-offs.

I have explored the consequences of the medicalised model of assisted dying and the implications of demedicalising the assisted dying debate in more depth in my article https://www.bmj.com/content/371/bmj.m2919 (12), and in my replies to the subsequent ‘rapid responses’. The BMJ have put my article behind a paywall, but I can send a manuscript version to individuals on request.

1. Godlee F. It’s time for all doctors to engage on assisted dying BMJ 2021; 374 :n2206 doi:10.1136/bmj.n2206
2. Hurley R, Richards T, Godlee F. Assisted dying: a question of when, not if BMJ 2021; 374 :n2128 doi:10.1136/bmj.n2128
3. Monforte-Royo C, Villavicencio-Chávez C, Tomás-Sábado J, Balaguer A. The wish to hasten death: A review of clinical studies. Psycho-Oncology. 2011.
4. Hendry M, Pasterfield D, Lewis R, Carter B, Hodgson D, Wilkinson C. Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying. Palliat Med. 2013;27(1):13–26.
5. Monforte-Royo C, Villavicencio-Chávez C, Tomás-Sábado J, Mahtani-Chugani V, Balaguer A. What lies behind the wish to hasten death? a systematic review and meta-ethnography from the perspective of patients. PLoS One. 2012;7(5).
6. Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. J Am Med Assoc. 2000;284(19):2460–8.
7. Ohnsorge K, Gudat H, Rehmann-Sutter C. Intentions in wishes to die: Analysis and a typology – A report of 30 qualitative case studies of terminally ill cancer patients in palliative care. Psychooncology. 2014;23(9):1021–6.
8. Rosenfeld B, Pessin H, Marziliano A, Jacobson C, Sorger B, Abbey J, et al. Does desire for hastened death change in terminally ill cancer patients? Soc Sci Med. 2014;111:35–40.
9. Savulescu J, Schuklenk U. Doctors have no right to refuse medical assistance in dying, abortion or contraception. Bioethics. 2017;31(3):162–70.
10. Oregon Health Authority. Death with Dignity Act Annual Reports. [https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARC…
11. United Nations Human Rights Office of the High Commissioner. End of Mission Statement by the United Nations Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, on her visit to Canada. Ottawa, 12 April 2019. https://www.ohchr.org/en/NewsEvents/Pages/DisplayNews.aspx?NewsID=24481&…
12. Thomas H L. Demedicalisation: radically reframing the assisted dying debate—an essay by Lucy Thomas BMJ 2020; 371 :m2919 doi:10.1136/bmj.m2919

H Lucy Thomas
Consultant in public health and specialty doctor in palliative care
Hertfordshire, UK

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Dear Editor

There should be information available to people which can be sensitively handled by sign posting to it not just in medical situations or the occasional media broadcast. There could be a place in Advance Directives, although not everyone is even made aware of these yet. They are not written in stone so decisions can be revised if wished.

The information would need to explain how a procedure would be carried out and who would be involved. Even now a woman who wants a termination of pregnancy will not know the doctor’s position until she needs a procedure. How are individuals to know who supports assisted dying? A register woud be useful but probably not be safe to be made public. There is no information mandatory on practice leaflets regarding positions on terminations although the religious and ethical beliefs of a doctor will vary.

It cannot be claimed that the public as a whole sees the medical profession as trustworthy, not only historically but throughout the world presently it has not been the body alone which can be trusted to oversee the protections of vulnerable people. There are many groups and organisations which have needed to set themselves up to speak for themselves and protect others. The present pandemic is a stark example whereby massive numbers of the population have died uneccessarily, many belonging to vulnerable groups, notably frail or just elderly; people with disabilities and others who would have been out of sight had it not been for families and concerned citizens speaking out.

Politicians make policy but the medical profession also has a responsibility which it needs to honestly own up to along with politicians, scientists and others. And include in any learning if it is proposed that guidelines will be set up. The individuals who signed off people with Covid were ‘my /our patients’ Doctors who have forced terminations on women, who cut off limbs as punishments for crimes follow orders. An alternative preference for some is to manage our own deaths but there need to be better ways than can be managed as is described in publications on Euthanasia These are in the public domain but are not accessible to all.

Susanne Stevens
Retired
Brecon
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12th September

Dear Editor,

It is with weary incredulity that I read the suggestion of the BMJ’s editorial team this week that “UK doctors must now engage with the debate” on assisted dying.[1] The arguments for and against assisted dying are nothing if not well-rehearsed.

On the basis of low participation numbers in the related polls of professional organisations, a meaningless tautology is offered that UK doctor engagement on the issue over many years has been inadequate, thus justifying the near one-sided presentation of the BMJ for the enlightenment of us all. Frankly this is jingoistic, disingenuous, and has been used to justify an unfortunate misappropriation of the BMJ’s editorial independence.

This week the editorial team have served up their own questionable argument in favour of a change in the law, together with a congruent and unopposed opinion piece that appears to settle the ‘God barrier’ (it doesn’t), although an acknowledgement of alternative views is given in Ole Hartling’s essay. This will not be the last contentious issue on which the BMJ has the possibility of raising the quality of national conversation. On such topics, where finely balanced views are held with equal passion, can you really suggest that you are serving your readers best interests with such blatant editorial bias?

1. Hurley R, Richards T, Godlee F. Assisted dying: a question of when, not if BMJ 2021; 374 :n2128 doi:10.1136/bmj.n2128

Yours sincerely,

Stuart J Fergusson
MBChB, BSc (Med Sci), ChM, FRCS, DRCOG, PGCAP, FHEA

General Surgeon
Aberdeen Royal Infirmary
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Dear Editor,

The legalisation of assisted suicide would not only be the death knell for many of our vulnerable patients, but also for freedom for the medical profession, due to a toxic mixture with the campaign for restrictions on conscientious objection.
Respect for others’ freedom was reflected in the recent BMA poll on assisted dying as, even though 50% supported a change in the law to permit assisted dying, only 36% of those polled would be personally willing to prescribe lethal drugs [1]. The results were more disparate for Euthanasia, with 37% supporting a change in the law, but only 26% willing to participate in any way in the process of administering drugs with the intention of ending an eligible patient’s life. This infers that although some BMA members would support a legal framework, the majority (74%) would not be prepared to harm their patients, even if this were legal. They value freedom of opinion and so would tolerate others’ views, but also expect their personal choice to be respected, even if there be a change in law.
Many health care practitioners would find referral complicit and an unacceptable degree of involvement in assisted dying. However, they would not restrict the freedom of others, so would be prepared to ‘signpost’, to let them know where they can go for another opinion. This would be in line with the current GMC position [2].

There is a subtle but real difference between referral and signposting and it works well for abortion [3]. It should be maintained in the name of freedom.

[1] BMA Physician-assisted dying survey Thursday 8 October 2020
Physician-assisted dying survey (bma.org.uk) https://www.bma.org.uk/advice-and-support/ethics/end-of-life/physician-a…
[2] General Medical Council. Good medical practice. London: GMC, 2019 Paragraph 52. Personal beliefs and medical practice
[3] Glasgow GPs do not need refer at all these days, only point to the Sandyford open access service.

Anne Williams
GP Partner
Scottish Council on Human Bioethics
52 First Gardens

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Dear Editor,

At a meeting of my BMA division I proposed a motion in 2019 that the BMA retain its position of opposition to assisted suicide and euthanasia.

I argued that there is often uncertainty over diagnosis at the end of life where there are multiple morbidities, major difficulties with prognosis, and the near impossibility of knowing whether patients was acting freely.

It was put to the vote of those present and supported by 7 to 4 members. It was taken to the ARM but not debated. Pity !

Anthony P Cole

rtd Consultant Padiatrician
Worcester Royal Infirmant ( now Worcestershire Healthcare Trust )
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Dear Editor

So many groups want to get involved. Whether it is to some extent a desire to control the issue or not who can tell – In some ways it mirrors the struggles around the issue of abortion. Lawers; medics; pharmacists; family and carers; politicians; advocates for and against assisted dying, psychiatrists, psychologists.. Their position is not neutral. Let’s hope disputes between them is not losing sight of the individual who wishes to make their own decision ,with the Help of someone who is committed to help , but not make the ultimate decision about something as sacred as one’s own life..
I am submitting another response as a negleted issue is that the adverse effect of many drugs has the effect of causing suicidal thoughts. This warning is specificaly stated on information for prescribed psychiatric and other drugs and highlighted by campaigning groups of people who have lost those close to them as a result of suicide . There is a danger the two, a request for assisted death and suicidal thoughts caused by prescribed drugs may be conflated especially when these days there is no guarantee that the person has a health worker who knows them well. Some People can make their views known through specific groups who to some extent represent them but have vested interests in protecting their organisations from losing funding if a position is taken to support assisted dying. There is no independant response published as yet from individuals with mental ill-health about how they want to navigate a request for assisted death which will no doubt have many caveats included in any formal process. Even if assisted dying comes into law it is likely sadly that more will die of suicide than go through the process required for assisted dying,

Susanne Stevens

Retired
Brecon
———————–
10th September

Too many unanswered questions about ‘assisted dying’

Dear Editor

Your editorial (Editorial, BMJ, 9 September 2021) perpetuates myths about ‘assisted dying’ by making it sound like a well-established, evidence-based health care intervention. It is not.

The editorial also leaves many crucially important questions unanswered. How will legalisation of ‘assisted dying’ impact on end of life care? Will people be safe from abuse and coercion if they have mental health problems and/ or are already feeling a burden upon their families or health and social care services? How will two doctors assess a settled wish to die and a lack of coercion especially if they have not met the person before? Will prognostication of life expectancy be accurate? Are the drugs that will be used safe and effective?

Contrary to your assertion that there are no reports of negative impacts on palliative care services in jurisdictions where physician assisted suicide and/ or physician administered euthanasia are legal, there is in fact increasing evidence of significant negative impact including pressure for Canadian hospices to deliver ‘medically assisted deaths’ or lose their statutory funding. None of these jurisdictions collect or report data necessary to determine if people choosing to consider ‘assisted dying’ are safe from abuse and coercion. Several legislatures have expanded eligibility criteria to include people without decision-making capacity. Prognostication is notoriously inaccurate; we get it wrong sometimes over hours and days let alone months. The combinations of drugs in high doses used to achieve physician assisted suicide have not been submitted to scientific scrutiny. The scanty evidence available on how people die after ingesting these lethal drugs suggests that they can cause unpleasant symptoms and death is not necessarily immediate or certain2.

For all these reasons we should heed what health care professionals from Canada, Oregon and Belgium are saying (https://youtu.be/ANS-7P2zcRk; https://www.youtube.com/watch?v=0nvJo15CCuA) and not follow their example.

1 Gerson SM, Koksvik GH, Materstvedt LJ, Clark D. Assisted dying and palliative care in three jurisdictions: Flanders, Oregon and Quebec. Annals of Palliative Medicine; 2020

2 Oregon Death with Dignity Act: annual reports. http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH…

Carol L Davis
Consultant in Palliative Medicine
University Hospital Southampton
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Why is the BMJ misrepresenting ‘assisted dying’?

Dear Editor,

It has long been clear where the BMJ stands on ‘assisted dying’, but at least we now have a better understanding of the quicksand upon which the editors stand (Editorial, BMJ, 9 Sep 21).

‘Assisted dying’ is not widespread. The number of people with access to an assisted death is 2% of the world’s population. To put this in perspective, 41 states in the US do not allow assisted deaths, many have laws against it and the US has a federal law against euthanasia.

The authors’ promotion of the components contained in the proposed ‘assisted dying’ bill in England and Wales ignores the obstacles. Firstly, in last year’s BMA survey a clear majority of doctors were not prepared to prescribe lethal drugs.(1) Will we end up like Oregon where a tiny proportion of doctors prescribe (one writing 31 prescriptions in 2020)?(2) Secondly, the authors conveniently fail to mention that every legislature has shortened or removed cooling-off periods and expanded their criteria beyond a six-month prognosis, some allowing or currently discussing assisted deaths in people with mental illness, learning disability, autism and children. Thirdly, conscientious objection will become little more than a fig-leaf.(3) Canada now requires doctors and their organisations to provide assisted deaths under threat of censure or closure. Fourthly, legalising assisted dying in Oregon has had no impact on their persistently rising rate of non-assisted suicides.(4) Fifth, the authors make no mention of the dearth of research into the safety and efficacy of ‘assisted dying’.(5)

The claim that legislatures such as Oregon are ‘strictly monitored’ is a caricature; little data is collected, the decision-process is not monitored, and any documents are destroyed after one year.(6) Other legislatures collect even less data. It is also wrong to pretend that hospice and assisted deaths live happily side by side. In 2012, two thirds of Oregon hospices had policies which prevented them or their staff from participating in assisted deaths.(7) A survey of healthcare professionals in Oregon, Flanders and Quebec found relationships between ‘assisted dying’ and palliative care could be ambivalent or even divisive.(8) This is not the cosy relationship parodied by the authors.

Finally, it is paradoxical to expect patients to relinquish their autonomy to two ‘independent’ doctors deciding behind closed doors. The vague concept of ‘high court approval’ could be a court deputy behind the same closed doors. This cannot provide the legitimacy that patients and their families are demanding, and yet the authors seem to believe that these secret cabals are an acceptable safeguard.

’Assisted dying’, if it comes to pass, should be a solely judicial decision, not medical.(9)

The editors prefer to ignore the reality that every so-called safeguard elsewhere has been viewed as a barrier to autonomy and each will be discarded in time. Even after 15 years we still struggle to implement crucial safeguarding legislation, the Mental Capacity Act. It is a delusion to think we will do any better with ‘assisted dying’ legislation.

References:
1) BMA Physician-assisted dying survey, October 2020. https://www.bma.org.uk/advice-and-support/ethics/end-of-life/physician-a…
2) Oregon Death with Dignity Act: annual reports. http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH…
3) Willis D, George R. Conscientious objection and physician-assisted suicide: a viable option in the UK? BMJ Supportive & Palliative Care 2019; 9: 464–467.
4) Oregon Health Authority Public Health Division. https://www.oregon.gov/oha/PH/DiseasesConditions/InjuryFatalityData/Page…
5) Sleeman KE, Owen GS. Assisted dying: we must prioritise research. BMJ Opinion, September 8, 2021.
6) Oregon Health Authority : Frequently Asked Questions : Death with Dignity Act : State of Oregon (see Q: Are participating patients reported to the Oregon Health Authority by name?)
7) Campbell CS, Cox JC. Hospice-assisted death? A study of Oregon Hospices on death with dignity. American Journal of Hospice and Palliative Medicine, 2012; 29(3): 227-35
8) Gerson SM, Koksvik GH, Materstvedt LJ, Clark D. Assisted dying and palliative care in three jurisdictions: Flanders, Oregon and Quebec. Annals of Palliative Medicine; 2020
9) Thomas L. Demedicalisation: radically reframing the assisted dying debate. BMJ, 2020; 371: m2919.

Claud Regnard
Retired Consultant in Palliative Care Medicine
Rob George (Professor of Palliative Care KCL and Elected Councillor, Royal College of Physicians, London); Amy Profitt (Head of Medicine, St. Christopher’s Hospice and President of the Association for Palliative Medicine)
North of England

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Dear Editor

“Doctors should not obstruct a decision that is for society and parliament to decide”. And yet it is assumed that doctors will assess and prescribe.

What is for society and parliament to decide is in truth whether people with an earnest and settled wish to take drugs to end their life should be prevented from doing so.
Both the limitation apparently to those with a short prognosis and the assumption that doctors must do it are wrong.

James Gilbert
Doctor
University of Exeter

——————–

9th September

Dear Editor

Every patient’s first question is ‘what is wrong with me, doctor?’ Only secondarily does the response usually include a recommendation as to what might be done.

Dying is not an illness. Assisting death is not a therapy. Promoting the death of any patient is not a medical role.

As soon as routine medical practice includes actions whose sole intent is to shorten life, all medical practitioners will be suspected of conflict of interest. Gone will be the trust expressed by countless patients: ‘I know you will do your best.’ In its place will be fear and anxiety – ‘what is that doctor’s real agenda?’ Dr Harold Shipman took it upon himself to serve his own personal agenda of self-gratification rather than his patients’ individual needs.

Once trust is lost it will be almost impossible to restore. With most doctors [in the UK] being employed by the state, the next step will be to bring doctor participation in this activity up to a standard of care.

Then, after a time, perhaps, certain categories of patients might be identified as ‘appropriate’ to be offered – maybe it could be termed be termed ‘a high standard of death?’

Doctors everywhere need to resist the clamour to irrevocably corrupt all doctor-patient trust in order to deliver a technical service of questionable [& unprovable] value to a small minority.

Anthony M Brooks
Retired consultant anaesthetist
UK