Victoria’s controversial Voluntary Assisted Dying Act comes into effect today after a marathon parliamentary battle in late 2017, followed by a year and a half of meticulous planning by the state’s Department of Health and Human Services.
Under the act, terminally ill patients who meet the eligibility criteria will be permitted to access a lethal substance that will allow them to end their lives. Where patients are unable to self-administer the lethal medication, the substance may be administered by an authorised medical professional.
Ostensibly this law is for patients experiencing unbearable pain and suffering at the end of life. It will give terminally ill patients the choice of ending their lives rather than suffering.
Yet the statistics from overseas jurisdictions tell a more nuanced story. Requests for euthanasia typically come from white patients who want to maintain a sense of control at the end of life, or who feel that life has lost its meaning. Pain is a secondary consideration, if it is relevant at all.
It is important that legislators in other states and territories are aware of this as they prepare to consider euthanasia bills in their own parliaments.
In the US state of Oregon – where assisted suicide has been legal since 1997 – about 96 percent of the patients who have “died from ingesting a lethal medication” were Caucasian. Data from the Oregon Health Authority also indicates that patients with a college degree or higher are over-represented among patients who have received assisted suicide.
The most common reasons these patients request euthanasia are a loss of autonomy, an inability to engage in activities that make life enjoyable, and a sense of lost dignity.
Similarly, a 2017 study in The New England Journal of Medicine of the implementation of euthanasia legislation in a Canadian hospital stated: “Those who received [medical assistance in dying] tended to be white and relatively affluent and indicated that loss of autonomy was the primary reason for their request.”
A 2011 Journal of Medical Ethics study of Dutch patients who requested euthanasia stated that feelings of hopelessness and a loss of autonomy were by far the most common factors motivating people requesting assistance in dying. “You lie in bed and none of the normal functions come back,” said one patient in the study. “They will never come back and it will only get worse.”
Pain, of course, features in some cases. Yet it is a relatively minor consideration. Data from Oregon suggests that only 26 percent of patients were motivated to request assistance in suicide due to inadequate pain control.
The image of patients writhing in pain, which bolsters the case put forward by euthanasia supporters, is simply inaccurate. The typical patient who requests euthanasia is a well-palliated, white patient who feels that life has lost its purpose; or such patients have lost the ability to be the author of the final chapters of their own existence.
What does all this mean?
For a libertarian, not much. It does not matter why someone wants to end their lives; it only matters that they want to end their lives. People should have control over their own deaths, regardless of their motivations. They are in favour of rational suicide, not euthanasia, as such.
Yet for the many in the community who still believe that euthanasia is about pain relief, this data should be a red flag. The reality is that debate about compassion and inadequate pain control is a distraction. This is really a debate about how we ought to respond to patients who are in a state of despair. It's important that we get our facts straight, as in this particular debate, mistakes can be deadly.
The discipline of palliative care “affirms life”, according to the World Health Organization, “and regards dying as a normal process”. Palliative care physicians help patients to explore and come to terms with their physical, emotional, existential and psychological suffering. They help patients to challenge the assumptions of their own self-perceptions, rather than endorsing their sense of worthlessness and providing them with lethal medication.
An Oxford don and expert in medical law, Charles Foster, made a very apt observation about this not long ago:
Concern about being a burden should not be a criterion justifying assisted dying. That ‘being a burden’ is in the minds of so many patients at the end of life is a depressing index of the breakdown of familial obligations and expectations in the Western world. It would have been unthinkable in most cultures and at most historical times. It is an artifact of an atomistic view of the self which is biological gibberish and sociological poison. We are not islands. We were all dependent as fetuses and children, and are dependent now on other road-users, pilots, doctors, genes, and the weather. No system of law or ethics that relies on a caricature of basic realities is likely to produce good results.
If indeed euthanasia is primarily a cultural and existential issue rather than a medical issue, this would seem to be an appropriate response. In providing patients with euthanasia, in contrast, we may inadvertently reinforce the problematic cultural assumptions that lead terminal ill patients to feel that they have lost dignity.
Euthanasia is thought to provide patients with a peaceful exit from this life. Yet it misses the deeper connection between the affirmation of life and what it means to die a good death.
Xavier Symons is Deputy Editor of BioEdge, which is also published by New Media Foundation. He is doing a PhD in bioethics. An earlier version of this article was published in the Sydney Morning Herald and The Age.