I’m Not “Better Off Dead”: The Problem With Assisted Suicide Legislation
"We can't make provisions for assisted suicide without assisted living."
This article contains references to assisted suicide, depression, and death.
Last week the Victorian Lower House passed an assisted suicide bill (euphemistically labelled a “voluntary assisted dying” bill) that has received significant opposition from disabled activists and palliative care bodies. The bill went to the Upper House, ironically, on Halloween and is currently being debated. A favourable Upper House vote seemed inevitable but some startling last-minute MP decisions have made the vote more precarious.
I am terminally ill and degeneratively disabled. Under the Victorian bill I would qualify for accessing assisted suicide as soon as it is available. And sorry, but that’s bullshit.
Disabled people are constantly taught that our lives are lesser because we are disabled, that disability is a tragedy, that disability is about suffering, that a disabled life is worse than death. Andrew Denton’s pro-assisted-suicide podcast is even titled Better Off Dead.
Disability is not a bad thing. We are disabled by our environments, by inaccessible infrastructure, by a world that values certain kinds of bodies and not others. Disabled suffering is not somehow more profound or unsalvageable than other kinds of suffering, like poverty, or domestic violence, or racism, or transmisogyny.
Euthanasia and assisted suicide, according to Palliative Care Australia, are fundamentally incongruous with palliative care. Assisted suicide is not designed to help disabled and terminally ill people. It is designed to help abled people who fear becoming disabled.
“Good Deaths” (Or Unworthy Lives)
Central to this debate is the idea of “good deaths” versus “bad deaths”.
The word euthanasia itself comes from the Greek: eu, meaning good, and Thanatos, the god of death. Suetonius used the term to refer to deaths that were “swift and painless”.
The etymology of euthanasia as a medical term began in the 17th century, and referred to the provision of analgesics and physical comforts during the dying process. The current usage of the term also has roots in the Nazi Aktion T4 program, whose purpose was to murder and sterilise disabled people on the basis of “lebensunterlebens”, or life unworthy of life, and “gnadentod”, mercy death.
Current legislation globally distances itself from Aktion T4 by making a distinction between “voluntary euthanasia” and “involuntary euthanasia”. “Involuntary euthanasia”, when applied to abled people, is just called murder.
The core ideals of the Victorian bill are, on the surface, altruistic. In theory their purpose is to give suffering people an exit route, with the idea that in extreme cases suicide is justifiable. But there is no denying the correlation between “lebensunterlebens” and “Better Off Dead”; between “gnadentod” and “relieving intolerable suffering”.
Suicide prevention resources often advise that seeking death in order to relieve pain is contradictory: “Remember that relief is a feeling. And you have to be alive to feel it.”
Regardless, the assisted suicide debate is not about physical pain — even its proponents will tell you that. It is about dignity, they claim.
If you think that being disabled is undignified, then that says more about you than it does about me.
Disabled People Are Not Being Heard
Not all disabled people are terminally ill, but all terminally ill people are disabled (under the Australian Disability Discrimination Act’s definition of disability).
In 2012, Centrelink struck the morbidity clause from the impairment tables for the Disability Support Pension, meaning that terminal illness is no longer addressed specifically by the conditions for access. Terminally ill people are often no longer eligible for the very strict criteria. I have been rejected from the DSP five times in three years, including an appeal to the Administrative Appeals Tribunal.
The Victorian bill would make it easier for me to access lethal drugs than pain medication.
The Victorian bill would make it easier for me to access lethal drugs than pain medication. In Australia half of all young transgender people have attempted suicide, myself among them. Terminally ill people with coexisting mental illness are not excluded from the bill. This law would put me two GP appointments and ten days away from death.
This bill only applies to disabled people, but was created by and is being voted on solely by abled people. Disabled and terminally ill people have not been actively consulted as a community. Surveys into public opinion have included targeted surveys of doctors and of religious people, but there have been no targeted surveys of disabled people. In August I attended a consultation between Victorian MPs and fellow disabled activists regarding the bill; we had to fight for that consultation, and a significant number of the MPs did not even show up to it.
Whatever happened to nothing about us without us?
This Bill Isn’t What You Think It Is
The Victorian government has named the bill as “the safest, and most conservative, in the world”. This is frankly not true.
The frequently-cited 68 safeguards of this bill mostly refer to bureaucratic errata including dispensation protocols, forms that must be filed, and the authorities that must be notified. Some of the safeguards are not really safeguards at all: one of the clauses is in its entirety reads, “A voluntary assisted dying permit comes into force on the day specified in the permit.”
Most of the safeguards are actually for medical practitioners, not for patients. Some of them involve amending legislation around suicide prevention, since under the new laws universal suicide prevention is no longer the goal. (The bill itself contradicts claims that this legislation is about “assisted dying” rather than “assisted suicide”.)
The bill legislates the provision of a lethal dosage of an unspecified “poison or controlled substance or drug of dependence”, which may then be kept at home for up to 12 months. Usually, in other countries the lethal drug is Nembutal (pentobarbital), a barbiturate, generally considered the most “merciful” drug of choice (though like any overdose it may still produce violent side-effects). But Nembutal is still prohibited for human consumption by the Therapeutic Goods Administration, and the Victorian bill does not change that. Instead what will likely be provided is individually tailored dosages of lethal drugs that are already available, which will not be covered by Medicare and the PBS.
There is actually no existing legal prohibition on assisted suicide in a palliative context. Theoretically patients are already entitled to refuse treatment at any time and to have their physicians administer morphine to suppress respiration according to an advance care directive. The trouble is the principle of double effect: the legal difficulty in the difference between treatment with the primary aim of initiating a patient’s death, and treatment with the primary aim of alleviating suffering and a secondary effect of hastening a patient’s death.
We absolutely need palliative care reform, but medical experts advise that legalising assisted suicide will create more harm than good in this regard. The approach suggested by palliative bodies tends to be a “minimalist legislative solution” that serves to further empower advance care directives. It’s a process that would protect both patients and their physicians.
We cannot make provisions for assisted suicide without assisted living.
Australian palliative care bodies have overwhelmingly come out in opposition of the bill. The Royal Australian College of General Practitioners (RACGP) has endorsed the bill but their position statement does not show a good understanding of the specific legislative details, and has met considerable internal opposition. Australian barristers also oppose the bill and have criticised the safeguards as inadequate and unsafe.
The World Medical Association has urged Victorian Upper House MPs to block the bill, and the federal branch of the Australian Medical Association has issued a position statement opposing euthanasia legislation, stating that medical intervention with the primary aim of ending a person’s life contravenes fundamental medical ethics. People With Disability Australia has also expressed concern about non-consultative assisted suicide legislation and its implications for disabled people.
I am trying very hard to have compassion for the people who are debating my “right to die” (but not, apparently, my right to live) without having done their research. I know that they mean well. I know that they think they are fighting for the autonomy and choices of myself and people like me. But to be quite honest I feel sick and furious. And I feel tired. Terribly, terribly tired.
I am certain at least that the Victorian bill is not a safe or compassionate approach to legislating assisted suicide. I am certain that palliative care reform must come first, as palliative experts have stated.
We cannot make provisions for assisted suicide without assisted living.