Nurses and assisted dying part 3
Tara Nipe discusses what people mean when they talk about assisted dying.
It’s important to be clear, because if we’re using different definitions then finding accord is a magnitude harder.
At the least intrusive end is withholding life-prolonging interventions, from the highly technical and labour intensive (like ventilation or dialysis) to low-tech but invasive (like feeding tubes). A disease process is the cause of death, we’re choosing not to prolong the dying.
While it may feel morally different, withdrawing therapy is much the same, both in terms of the range of interventions, and the underlying proximate cause of death. In this case, instead of deciding not to introduce a life-prolonging intervention, we stop one that is currently in place; this is often because we had hoped it would be more effective in this particular case. For example, a person with end-stage respiratory disease may present to hospital multiple times with a chest infection; occasionally, a day or two of ventilators support is enough (along with antibiotics and other therapies) to resolve the acute exacerbation, but often the patient’s disease is so advanced that the patient now can’t survive unaided.
Next is the decision not to treat an acute condition (perhaps an infection) in a person who has multiple medical issues. These disease aren’t imminently life-limiting, but the patient’s long-term prognosis is poor, and death from the acute issue is often kinder (it’s easier to manage symptoms) and faster.
While there are many variations around eligibility and techniques, voluntary assisted dying is the legal provision of a method that will directly bring about the death of a person who has consistently expressed a wish to die.
Cases in this group can be further categorised: in voluntary assisted dying the person is given the means to die, but commits the act themselves; in voluntary physician-assisted dying the mechanism directly causing the death is administer or performed by a doctor.
In Europe (eg the Netherlands, Belgium) the person must be suffering (definitions of ‘suffering’ vary), while in North America (eg Oregon) they must have a terminal diagnosis, with less than six months to live. If the proposed Victoria legislation passes, patients will need to be both terminally ill, with a time-limited prognosis, and have unrelievable suffering.
A key component of all the voluntary assisted dying laws is that the person assisted wants to die – they have made repeated, consistant requests for help to die. In some cases the laws allow those requests to have been made in advance, in the form of living wills, advanced directives, and other tools that allow a person’s wishes to be known in the event they can no longer voice them.
If a person is not competent to request or consent, has never had that capacity (an infant, perhaps, or someone with profound life-long incapacity), or has lost capacity (eg is now an a persistent coma, has advanced dementia) and not indicated that they would prefer to die, deliberately bringing about their death for humane reasons may be termed non-voluntary euthanasia. That person hasn’t consented, and their preferences aren’t known or knowable.
Finally, there is the spectre that looms over every discussion about assisted dying – involuntary euthanasia. This is the deliberate causing of death of people who not only have not chosen or consented, but actively do not wish to die. It was most notoriously used during Germany’s Third Reich to ‘eliminate’ populations the Aryan ideology deemed ‘undesirable’ or ‘life unworthy of life’ including people of low IQ, the mentally ill, people with significant neuroatypicality (autism spectrum disorders had not yet been identified), people with significant epilepsy, alcoholics, and the disabled.
There is no question that this ‘euthanasia’ or Gnadentod (‘merciful death’) was murder. I understand why some people have genuine concerns that legalising voluntary assisted dying is the first step on a road that leads to death camps. Here’s why that won’t happen.
First, the motivation and underpinning ideology is wholly different. The West, worldwide, was enamoured of eugenics in the 1930’s – a worrying number of intelligent people believed heritability was a major contributor to population traits. Get rid of the bearers of bad genes, went the theory, and we will engineer a super race of smarter, taller, faster, more beautiful people. Anyone considered socially undesirable could be sterilised, to prevent their flawed attributes entering the gene pool.
It was in that context that Germany introduced the idea of ‘mercifully killing’ children in institutions, for their own good, often without parental knowledge let alone consent. Within a few years, this policy was extended to adults, then expanded further still – always with deception, and never with the consent of anyone involved.
The idea of eugenics has no scientific credence today, and the overwhelming majority of people find it repugnant. Contemporary advocates for assisted dying are motivated by compassion for individuals, with a strong insistence on voluntariness, consent, and openness.
The cultural change needed to move that motivation some 180° would be significant, and strongly resisted not only by those who oppose current proposals but also those who advocate for end-of-life choices. To cohort voluntary assisted dying with the mass murder of unwilling innocents not only does a disservice to those people who are suffering as I write, but to the victims of the malignant ideology that underpinned murders masked as kindness.
There are a number of ways that I could approach this perennial issue that rouses strong and often polarising opinions. I have a graduate diploma in bioethics, and a masters in health ethics, so I’m well versed and better qualified than many to take a relatively objective stance and present a robust, solidly-constructed argument based on virtue ethics, Beauchamp and Childress’s Principles, casuist philosophy, or even a Hippocratic perspective. I could present an argument from self, about what I would want, and invoke Mills, who argued that there are limits to the reach of the state over the individual. Or I could, as SA nurse Sandy Bradley has, speak from a professionally dispassionate perspective, with citations and an academic tone.
These are all valid, useful ways to discuss assisted suicide/voluntary euthanasia, and reading these kinds of pieces have informed my position. But what has most strongly strengthened my commitment to the legalisation of assisted suicide isn’t theory, or research, or philosophical argument. It’s the patients I’ve cared for, and those for whom my care was woefully inadequate. The patients whose memories still bring tears to my eyes, a lump to my throat, and a sensory reminder of the frustrated impotence I felt when “everything we can do” wasn’t close to being enough.
I have seen people in kinds of distress I wish I never knew existed, experiencing so much pain it’s been hard to believe it didn’t kill them. The very first person I saw die vomited and retched until the moment she died, despite high doses of antiemetics. I’ve helped a colleague turn a patient whose limbs were so swollen with excess fluid that they wept, constantly, a physical grief reflecting his unending moans. I cared for a frequent flier patient, who I had come to know well over the course of almost a decade, who crawled up the ward corridor crying for pain relief I was forbidden to give her because the doses that would lower her pain would also kill her – she died less than a week later, still in pain. I had to tell the wife of another familiar and dear patient that I couldn’t help him die sooner, though it was what I wanted to be able to do even before she dropped to her knees before me, and begged.
Over a decade ago I heard Roger Magnusson talk about his doctoral research that, in part, described, the kinds of deaths that occurred in the absence of formalized, legalized assistance, and I was horrified by the lack of screening, the lack of dignity, and the effects on everyone involved. Earlier this year, at the ANMF (Vic branch)’s annual delegates conference, I heard Andrew Denton speak about watching his beloved father, Kit, die over an eternity of three days. It reinforced my belief that the time has well and truly come for Australia to join those countries and states that offer their dying and suffering populations another choice at the end of life, if the interventions currently available aren’t enough.
There have been dozens of Bills brought in front of parliaments across the country, with varying degrees of traction, but none with success – in part because there were inadequate safeguards to protect our most vulnerable, but mostly because opposition from organised religion (such as the Australian Christian Lobby) has been better mobilised, and louder; their position may be the minority one, going by every poll on assisted dying, but their voices are disproportionately heard, and that’s neither right nor fair.
I understand concerns about both coercion of people who are influenced by unethical family members, and the fear of a slippery slope to wholesale, state-sanctioned murder; I do not agree either or both are reason to prevent those who are dying, suffering, and beyond the reach of palliative care from having the option of a faster, kinder route to the death their condition makes inevitable. Instead any legislation should be informed by these reasonable concerns, by including rigorous safeguards to protect those at risk of underhand manipulation. I will write at some future point about how the ‘euthanasia’ committed by Nazi Germany in the 1930’s and 1940’s was not only qualitatively unrelated, but also the result of very different motivation; for now, suffice it to say that this is neither a likely nor plausible end point when we start by looking at compassionate, patient-centred, voluntary additional options for competent people who are terminally ill.