Challenging myths in the 'assisted dying' debate
Dr Denise Cooper-Clarke exposes five myths around the voluntary assisted dying debate
By Denise Cooper-Clarke
August 1 2017
In August a ‘Voluntary Assisted Dying’ Bill will be introduced into the Victorian Parliament. Voluntary assisted dying (VAD) involves, at the patient’s request, either the provision of a prescription for lethal medication which the patient may then take to end their life (otherwise known as doctor or physician-assisted suicide), or, if the patient is physically unable to take the medication, a lethal injection (otherwise known as voluntary euthanasia). Dr Denise Cooper-Clarke, who has a doctorate in medical ethics, exposes what she sees as five myths surrounding the debate.
Bob* is a 71 year old retired dairy farmer who was widowed last year and has recently sold his farm and moved to a unit in a Victorian country town. He has few friends and his two children live at some distance, his son in Sydney with his family, and his daughter in Canada. Bob sees his grandchildren only occasionally. He is not interested in any local community groups, does not belong to a church and has no hobbies. He increasingly feels lonely and that his life lacks any purpose or meaning.
Routine screening reveals the possibility of bowel cancer and he visits his local general practitioner, Dr Ros*. After conducting further tests, Ros gently informs him that yes, he has bowel cancer, which is of an aggressive type. Untreated, it will likely prove fatal within twelve months. But, she explains, treatment has a good chance of prolonging his life by up to three or four years.
Dr Ros is taken aback when Bob tells her that he doesn’t want any treatment and that he can’t face the prospect of being sick and dependent. On further questioning, she discovers that though he is physically fit and in good general health, with no symptoms from his cancer, he is socially isolated, and has trouble sleeping. She wonders if he is depressed or still grieving for his wife, and suggests seeing a counsellor or even a psychiatrist, but he refuses to consider this.
Ros finds that his wife died, in a “horrible way” according to Bob, of lung cancer after two years of chemotherapy which caused major side effects. She suggests he might talk the situation over with his children, but Bob says that he has never been close to his son and that his daughter “lives too far away and has her own life to live, I wouldn’t want to burden her”.
It is 2020 and voluntary ‘assisted dying’ (VAD) is legal in Victoria. Bob asks Ros if she will provide him with a prescription for medication to end his life. Feeling somewhat helpless, Ros tells Bob that she wouldn’t be comfortable doing that at this stage, and that he needs more time to think. She strongly urges him to reconsider having treatment, and also to consider counselling, which is available in the district, saying that he could be greatly helped by it. She gives him some pamphlets about bowel cancer, and the phone number of the counselling service, and makes an appointment to see him again in a month.
Bob fails to keep that appointment. He has travelled to Melbourne and visited a doctor whose name he obtained on the internet as one who is willing to provide VAD. Dr Henry* thinks that Bob would be better off having treatment and getting some psychological help, but the VAD legislation does not require him to agree with the patient’s decision to die or to think that it is a wise choice, only to determine whether he meets the criteria. And Bob does meet the criteria.
The day after Bob’s missed appointment, Ros receives a letter from Dr Henry informing her that Bob has died after being prescribed lethal medication under VAD legislation. The death certificate states that he died of bowel cancer.
Myth #1: That ‘assisted dying’ will only be for patients with extreme, uncontrolled pain or other physical symptoms.
Michael Short expressed this myth when he wrote in The Sydney Morning Herald in June that it is undignified to prevent “people who are suffering excruciatingly and are irretrievably close to death from having that choice”. (http://www.smh.com.au/comment/four-laws-that-have-to-change-immediately-20170621-gwvo8h.html)
But Bob’s case is not one of excruciating suffering and he was not irretrievably close to death. Yet he meets the proposed criteria for voluntary ‘assisted dying’ in Victoria. According to an article in the Medical Journal of Australia (Ezekiel Emanuel, ‘Euthanasia and physician-assisted suicide: focus on the data’, Med J Aust 2017; 206 (8): 339-340), evidence from many studies shows that pain is not the primary reason why people access VAD. In the US state of Oregon, where doctor-assisted suicide has been practised for seventeen years, less than a third of the patients had or were in fear of inadequate pain control. Instead, what motivates requests for VAD are psychological factors: “depression, hopelessness, being tired of life, loss of control and loss of dignity”. Similarly, in the Netherlands, researchers found that few patients receiving euthanasia had physical pain, but a majority were depressed. Yet in both Oregon and the Netherlands psychiatric evaluation of patients is not mandatory, and very few receive a referral to a psychiatrist. Emmanuel concludes, “Since psychological reasons dominate, one would think that requiring psychiatric evaluation would be a reasonable safeguard before providing euthanasia or physician-assisted suicide”.
The proposed VAD legislation does not require referral to a psychiatrist (or other appropriate specialist) when a doctor suspects depression unless the person’s decision-making capacity is in doubt. Emmanuel’s “reasonable safeguard” has been rejected.
Bob meets the criteria for VAD because he is over the age of 18, has capacity to make medical decisions (mental illness has to be extreme to limit decision-making capacity), is suffering from a medical condition which is “advanced, progressive and will cause death” and while he has no physical pain or symptoms, he reports “suffering that cannot be relieved in a manner (the patient) deems tolerable”. This suffering does not need to be physical, but includes suffering related to “the nature and prognosis of the disease”, “loss of autonomy or loss of dignity” or concerns about these. He may be depressed, but the presence of mental illness in itself does not disqualify a person from accessing VAD, unless their decision-making capacity is affected. His psychological suffering could most likely be relieved by psychotherapy and/or antidepressants, but these are not deemed tolerable by him. Whether he is suffering is not for the doctor to judge but determined according to the patient’s own perception, since suffering is “individual and subjective”.
Myth #2: That ‘assisted dying’ will only be available for patients who are close to death anyway.
Most people would understand the “end of life” to be the last few weeks or perhaps the last few months of life. But the proposed legislation will allow ‘assisted dying’ for patients diagnosed with an “incurable disease, illness or medical condition… that will cause death within weeks or months, but not longer than 12 months”.
Myth #3: That ‘assisted dying’ is not suicide
One extraordinary expression of this myth is that under the proposed legislation, those who die using VAD should have the cause of death on their death certificate recorded as their underlying disease. But these patients do not die of their underlying disease, they commit suicide using a drug prescribed for that purpose. The euphemism ‘assisted dying’ is designed to mask the fact that it is actually a form of suicide.
Legalising ‘assisted dying’ will send mixed messages about suicide prevention. How incongruous that VAD is being promoted at the same time as there is so much emphasis on suicide prevention. Suicide is a major social problem, and we rightly spend resources aimed at reducing the suicide rate.
Usually when someone is suicidal, we try to help them to live, not to die. If VAD is legalised, we would on the one hand be promoting suicide prevention, and on the other, promoting suicide as a legitimate choice. Effectively the state and the medical professions, both very powerful institutions, legitimise and sanitise suicide. Suicide is no less tragic when a person is old rather than young, disabled rather than ‘normal’, or sick rather than healthy. To approve suicide for some but not others is inherently discriminatory, and indicates that some lives are considered of more value than others.
Myth #4: That adequate safeguards are possible
Michael Short claims that “assisted dying” has “worked well elsewhere in the world”. But this is a highly contestable claim. Dutch ethicist Theo Boer, a former euthanasia advocate, is now very concerned about the practice in Holland and Belgium:
Even if a deliberate choice to die – with or without assistance – may be justified in exceptional cases, I now conclude that there is reason for caution when it comes to putting such exceptions into a legal framework… Neither the Netherlands nor Belgium has made a serious attempt to problematise the voluminous rise in the numbers, the ongoing broadening of the reasons and the paradigm shift from assisted dying as a last resort to it becoming a normal death… every case of assisted dying for which there would have been a less drastic alternative is one case too much
(Theo Boer, ‘Following the Guide? Why Dutch and Belgian Experiences on Assisted Dying Should Concern Other Countries’, Zadok Perspectives 131 (2016), p.8).
Psychiatrist Boudewijn Chabot, a pioneer of euthanasia in the Netherlands, is now horrified as he looks back on 25 years of euthanasia in that country, saying that “legal safeguards for euthanasia are slowly eroding away” and that “the law no longer protects people with psychiatric conditions and dementia”. The number of euthanasia cases increased between 2007 and 2016, from 2000 to 6000. According to Chabot, “The euthanasia practice is running amok… it really went off the tracks when the review committee concealed that incapacitated people were surreptitiously killed”. (https://www.bioedge.org/bioethics/a-dutch-euthanasia-pioneer-surveys-the-wreckage-and-despairs/12351).
The fact that it is impossible to adequately safeguard vulnerable people is what has repeatedly prevented ‘assisted dying’ from being legalised in Australian states (most recently in November 2016 in South Australia and in May 2017 in Tasmania) and in other jurisdictions such as Great Britain (in 2015).
We might expect that in order to succeed where others have failed, the Victorian Government would propose very strict safeguards to protect vulnerable patients, for example those who have mental illness or questionable decision-making capacity, or who may be subtly coerced into requesting VAD or be victims of elder abuse.
However, the Andrews Government seems instead to be willing to ‘balance’ known risks to some patients in order to promote the autonomy of others. The Ministerial Advisory Panel speaks of providing a balance between the aim of promoting autonomy and the need to provide appropriate safeguards, which seems to be an admission that the proposed safeguards will not always be adequate and that some risk of abuse is accepted. Indeed, the Panel speaks of the need to balance strong oversight with avoiding “invasive requirements”.
Myth #5: That opposition to assisted dying is only based on religious arguments
Media personality Andrew Denton has blamed a “hidden theocracy at the heart of government” and the “unrepresentative” Christian lobby for blocking the introduction of VAD laws in Australia. But as indicated above, the arguments that have repeatedly defeated ‘assisted dying’ legislation have not been specifically religious, but based on the impossibility of providing adequate safeguards for the vulnerable. The opposition of the medical profession to assisting suicide dates back to the Hippocratic tradition, four centuries before Christ.
We should not have legislation based on myths, but on the reality of the vulnerability of the depressed, the sick, the disabled and the dying. We should learn from the mistakes in other jurisdictions that have gone down the ‘assisted dying’ path, and refuse to go down that dangerous path ourselves.
*Bob, Dr Ros and Dr Henry are fictitious names and this story is given as a possible scenario.
Dr Cooper-Clarke is a member of the Melbourne Anglican Social Responsibilities Committee, on whose behalf she has written this viewpoint.
If the article has raised issues relating to your own situation you may wish to contact Beyond Blue (phone 1300 224 636) or Lifeline (phone 13 11 14).