Dignity

Exploring the reality of assisted dying.

Content note: this article discusses suicidality, death, assisted suicide, and healthcare discrimination.

Last year in the United Kingdom a great number of disabled people were given involuntary Do Not Resuscitate orders by their doctors, without their knowledge and without their consent. This included an ‘unprecedented’ amount of DNRs in place for people with learning disabilities. The UK’s Care Quality Commission said that these DNRs had caused avoidable deaths. Disabled people made up six in ten of the UK’s COVID-19 deaths in 2020.

In the United States, COVID-19 deaths were disproportionately located in Indigenous, Latinx, Pacific Islander and Black communities. Indigenous patients were 3.3 times more likely to die of COVID-19 than white patients. The pandemic exacerbated the extreme disparities in healthcare access that already existed: COVID-19 is less survivable for the marginalised.

Eugenics is not a thing of the past. Disabled people know that we are considered disposable, that profit motives overtake societal responsibilities of care, that we are not considered as valuable or productive members of society under capitalism, and that our lives are considered less worth living. The metric used for medical quality of life is Disability Adjusted Life Years (DALYs), a measure that groups years of life lost due to premature mortality and years of life lived while disabled. That is, the medical standard for quality of life considers disability to be equivalent with death.

Recent research from UNSW found that 38% of deaths of people with intellectual disabilities were from avoidable causes. Every year around 400 people with intellectual disabilities die preventable deaths. Life expectancy is far lower than the general population, mainly due to discrimination. Aboriginal and Torres Strait Islander peoples also experience greatly disproportionate avoidable deaths (where again, healthcare discrimination is an enormous factor), in particular via cardiac disease, diabetes, COPD, and suicide.

This year, Western Australia, Tasmania, South Australia, and Queensland all quietly passed ‘voluntary assisted dying’ laws that will make it possible for patients to access lethal (unspecified) Schedule 4 or Schedule 8 poisons, to be administered by themselves or their doctors. Most of these laws were based on the Victorian legislation that passed in 2017. New South Wales was about to debate a similar bill, delayed until 2022.

These laws have been widely reported as very safe; so safe that they contain dozens of safeguards. Most of these safeguards, however, are for protecting doctors from criminal liability, not protecting patients from abuse, neglect, and duress. Most clauses aren’t actually safeguards at all, but about administrative requirements such as labelling requirements, pharmacist records, and the definitions of terms. There is nothing in the laws stopping family members from pressuring patients into accessing VAD, or ensuring that patients are adequately supported through the process.

Under the Victorian legislation, people who die by assisted suicide have their deaths recorded as caused by the condition that made them eligible, not by VAD. Eligibility is determined by assumed life expectancy – a judgement made based on those same death statistics. Only two health professionals need to sign off. There is only a ten day wait.

The Tasmanian legislation has several eligibility clauses for ‘anticipation of suffering’ and ‘no reasonably available treatment’. Initially Tasmanian eligibility applied to anyone who self-described as ‘suffering intolerably in relation to a relevant medical condition’; an eligibility requirement in relation to shortened life expectancy was only added in later.

The laws use the phrase ‘assisted dying’ in place of ‘assisted suicide’ because otherwise it would require amending legislation for suicide prevention (where patient wishes are overridden to preserve life, sometimes including arrest, involuntary hospitalisation, and practices of seclusion and restraint that advocates have been trying to end for decades).

None of the Australian VAD laws require psychological counselling for applicants.

None of them require provision of affordable treatment options, or pain relief. We do not have good structures for pain management in this country; medical marijuana is technically legal but expensive and difficult to access. Even when medication is covered on the PBS, it still requires expensive specialist appointments to access prescriptions. Chronic pain patients are expected to work their way up from Panadol. In the efforts to deny opioid access, ‘alternative treatment’ Lyrica (aka pregabalin) has become the top pain medication on the PBS, despite research linking it to increased suicidality, seizures, psychosis, and intense withdrawal.

We do not have good structures for terminal disease management, either.  Cancer treatment is only partially covered by Medicare: one average, Medicare covers 63% of the total costs of treatment. The Consumers Health Forum of Australia has noted that over half of cancer patients pay at least $5000 out of pocket for treatment, and a quarter have out-of-pocket costs exceeding $10,000. Some prostate cancer patients pay over $17,000. Private healthcare patients pay even more, for specialists that charge higher fees for faster treatment.

US disability rights organisation Not Dead Yet argues that ‘legalised assisted suicide sets up a double standard: some people get suicide prevention while others get suicide assistance, and the difference between the two groups is the health status of the individual’. In the US, all of the major disability rights and disability justice organisations that have official positions on assisted suicide oppose it.

Terminality isn’t exact. Stephen Hawking was told he would only live two more years after being diagnosed with ALS; he lived for 55.

Pain is treatable, though treatment is often difficult to access.

Dignity is subjective.

In Belgium in 2013 a 44-year-old transgender man named Nathan Verhelst was euthanised because he was unhappy with the outcome of his surgical transition, which his doctors felt met the requirement for ‘unbearable psychological suffering’.

In Canada in 2018 a chronically ill man named Roger Foley began a lawsuit after his doctors refused to provide him with in-home care, and offered medically assisted death instead. He was told he would have to pay $1500 a day to remain in hospital (that is, to live).

The ‘undignified’ factors that many ‘dying with dignity’ supporters emphasise are more about disability than they are about terminal illness. In Oregon, where assisted suicide has been legal for twenty years, the leading reasons given by patients requesting lethal prescriptions are ‘psychosocial factors such as perceived loss of autonomy, or feeling they are a burden’.

I have a painful, degenerative condition. Sometimes people tell me that they would kill themselves if they had to live like I do. After I was diagnosed I wanted to die. I didn’t, but it was incredibly hard getting access to the supports that would allow me to live.

There is a great need for radical change in palliative and end of life care, but palliative doctors in Australia suggest that VAD laws actually obstruct good care for palliative and terminally ill patients. They also claim that the laws are insufficiently researched.

VAD doesn’t guarantee a peaceful death, especially since Nembutal – the barbiturate used overseas – is still illegal for human use in Australia. Even with Nembutal, some people take hours to die, and their deaths are not necessarily painless.

Support for VAD is widespread but rarely well-informed. It is also bipartisan – both One Nation and the Greens support VAD laws.

Of the World Medical Association’s 109 constituent National Medical Associations, 107 oppose euthanasia and physician assisted suicide. The Australian Medical Association states that ‘doctors should not be involved in interventions that have as their primary intention the ending of a person’s life’ but that these laws are ‘ultimately a matter for society and government’. In 2017 the AMA stated that they had ‘grave concerns’ about the Victorian VAD bill, and that they opposed it.

Other medical position statements are noncommittal, such as those of the RACGP (GPs) and the RANZCP (psychiatry), both of which avoid either supporting or opposing VAD laws.

Palliative Care Australia’s position statement considers assisted suicide to be incompatible with the practice of palliative care. This is because treatment with the primary purpose of ending life (rather than a primary purpose of treating illness/pain, and a possible secondary effect of inducing early death) is fundamentally at odds with the practice of end of life care. Legislating VAD also has concerning implications for what will or won’t be covered by insurance; in the US, where it has been legalised, there has been substantial documentation of insurance providers withdrawing coverage for expensive pain medication and life-saving care while providing coverage for assisted death.

Palliative doctors have suggested that a better method would be to bolster legislation around advance care directives, so that doctors can follow patients’ instructions around end of life procedures without fear of legal reprisal, and so that patients can have autonomy and power over the process of dying (including refusing life-saving treatment, and the administration of morphine to suppress respiration and induce death – something that is already legal). They also call for more funding for the palliative sector.

I don’t have a moral objection to suicide, and I support people wanting to have control over their deaths. I don’t believe that VAD laws in their current forms are the best way to do that – and many palliative doctors agree. The current Australian legislation does not sufficiently preclude abuse or duress. There is a concerning lack of alternative supports, to make sure that wherever possible people are supported to live before they are supported to die.

In my opinion – as a disabled person whose disability will at some point kill me, as someone who has watched family members die slow and painful deaths, as an atheist who used to support VAD laws until I saw the realities of our healthcare system  – there are too many fatal and widespread problems in our current healthcare system to safely legislate VAD.

First address the widespread abuse and neglect in aged care and disability care.

First legislate fully funded medical care, so people don’t have to make GoFundMes for cancer treatment.

First address the embedded racism in medicine, especially for Aboriginal & Torres Strait Islander patients.

If this is about individual choice – first consider who is given power to choose.

First ensure people are supported to live, adapt, and have their pain treated.

Then we can talk about assisted suicide.

This is a very difficult and painful topic. I do not enjoy arguing about it. It makes my soul feel very, very tired.

It is, however, a necessary conversation.

If you support VAD legislation, please at least make sure that it is informed support – that you understand the specifics of what you are supporting, and why. If the NSW VAD law passes, it will be stronger and safer if its flaws are addressed.

Importantly, not all disabled people oppose assisted suicide legislation, and many have complex or nuanced views on the subject. Unfortunately these nuanced opinions are largely neglected by mainstream coverage, which mostly frames the conversation as a debate between religious opposition and family members.

What I care about most is making sure that disabled people have a say on laws addressing disabled life and death.

Love and solidarity to my community, always.