Legalising euthanasia while the world is in the grip of a deadly pandemic would further stretch an already stretched health system, and have implications far beyond that for the disabled community, writes Robyn Hunt.
Read more perspectives on the assisted dying referendum here.
Considering assisted dying in the middle of a deadly world pandemic seems counterintuitive. We are fortunate to live in a country that has worked hard to preserve life, has recognised that certain groups are greatly at risk and tried, largely successfully, to protect them. But we are to vote in a referendum for the End of Life Choice Act in just a few weeks, so it is important to carefully consider its implications in this context.
There is no way to get around the fact that this is bad law, badly written. The worst of it, from the point of view of the disability community, is that of the eligibility criteria. They are very loose. Supporters of the act believe that discounting age, mental illness and disability provides protection for the groups who expressed concern during the inquiry and the progress of the legislation.
But there is no bright line in real life between disability and terminal illness. The supposed exclusion of disability is meaningless, as the disability community understands only too well. Baroness Jane Campbell put it very clearly when she said, “The distinction between disability and terminal illness is a false one: for many disabled people a chest infection is a terminal illness unless treated. The disabled person dependent on a ventilator is terminally ill if the ventilator is switched off. I am many years over my prognosis end date, along with countless others who have a progressive condition.”
That is a poignant example under present circumstances. I’m fairly certain Baroness Campbell would not describe her disabled life as a fate worse than death, the way many non-disabled people see people in wheelchairs and who need a high level of support.
Disability and illness easily become conflated. MS and motor neuron disease are impairments that result in illness. Severe illness brings impairment. The two are conflated in the bill and not understood by its supporters or the general public. “Incurable disease” has been described as code for “disability”.
There’s a sort of existential dread surrounding disability, a fear of perceived pain and suffering that causes perfect strangers to approach people I know, particularly those who use wheelchairs, and say, “If I were like you I would kill myself,” with absolutely no thought of the effect those remarks would have on the disabled person.
There’s the “someone else having to wipe your bum” test that makes many non-disabled people think death is preferable. Yet I know people who live such lives already with grace and dignity, and manage full lives on their own terms, when access to quality support allows them. But the negative societal attitudes subtly devalue lives and can grind people down.
Societal and personal pressure can be extremely subtle. Can we be absolutely sure that nobody would ever choose assisted dying because of pressure from another person or group of people? Or from constant negative social pressure and the feeling that they are a worthless burden? They are constantly reminded of their precariousness as people who may need considerable support of various kinds, and often have to struggle simply to get what they need.
Disabled people can be made to feel worthless by a deeply ableist society. New Zealand has a very high youth suicide rate yet we have no record of how many of them are disabled.
The act is highly individualistic. It holds the right of the individual above the rights of the group, a concept that I know makes many Māori and disabled people feel uneasy. As one disabled Māori leader says, “Why should Māori trust the state on the topic of euthanasia, when we can’t even trust the state to provide adequate and equitable health care, education and housing?” Māori and Pacific disabled people have less access to disability services and supports than other disabled people so that level of cynicism is hardly surprising.
The argument for achieving good lives before being offered good deaths is a common one within the disability community around the world. The resources applied to disabled people, 24% of the New Zealand population, are woefully small. I’ve heard it said that horse racing gets more money than disability!
Disabled people do not trust a system that already allows violence, abuse and deaths to go unreported and often unacknowledged. Families who kill disabled members are treated more leniently by the courts than others who kill family members. There is talk of “mercy” killings. Of course situations like this are complicated, and can’t be “fixed” by a simple solution. But disabled people don’t trust a system that so often fails them.
Choice is a luxury for many disabled people. For example, there is a desperate accessible-housing shortage. Some people have little choice about where they live or with whom. Having to shower at work because you can’t find accessible accommodation is not a choice, even when you earn enough to pay for decent accommodation.
Recently a disability service provider was outraged when a promised disability support funding increase turned out to be “a paltry funding increase despite a big deal being made about extra money in the budget”.
Usually more is promised, less is delivered to support an everyday life, making the idea of choice in this situation mere smoke and mirrors.
Our mental health services are failing people who need them, and months of lockdown and Covid uncertainty have not helped. The health system is also struggling to meet the needs of the poorest New Zealanders, and in particular children and Māori and Pacific peoples.
In some parts of New Zealand, those approaching the end of their lives have access to world-class palliative care. Unfortunately that isn’t the case everywhere. The option of quality palliative care ought to be readily available before we consider euthanasia or assisted suicide.
The question needs to be asked. Is this the time or the season to introduce such a law? As a nation we are now deeply in debt, yet are confronting setting up a whole new system to support the act as Dr Ben Gray, senior lecturer in primary health care and general practice at University of Otago, Wellington, recently pointed out.
If the referendum is passed, a new bureaucracy will need to be established – new services provided on top of an already stretched health system, using money that is desperately needed elsewhere. Hospices have already stated clearly that they won’t provide the service, but others in the medical community will have a decision to make. While money will be saved by people dying earlier and not requiring pensions, health care or services, there will still be a considerable outlay needed to establish a system and service for assisted suicide.
Who will pay for the drugs? Pharmac? Will this result in other much-needed drugs not being funded?
Responding to setting up a system for assisted suicide will take attention and resources away from the challenge of the Covid pandemic, and improving other much-needed health outcomes, including the expansion of palliative care.
A disabled supporter of the act – yes, there are some – has pointed out that everything costs, and that costs should not necessarily stop people from doing things. They argued that some people might object to paying for disability support as a burden on the economy. They went on to say that there would be a high demand for end of life choice, and that for many people just having that option would bring peace of mind. But that raises the question, is the price of peace of mind for some worth the risk and the cost? And who ultimately pays that cost?
We know that the enablers of euthanasia and assisted suicide change over time. Canada has introduced a bill challenging and abolishing their disability exclusion. If the New Zealand act comes into force it will be challenged on the same grounds as the Canadian challenge. In Canada, medically assisted death could soon be available to people who are not terminally ill but who experience unbearable suffering. The bill opens the door to allowing disabled Canadians to seek medically assisted death.
Both Canadian plaintiffs had conditions they said had worsened to the point that they had lost all their autonomy. They had experienced persistent and irremediable suffering, it was argued. The Canadian disability community has argued strongly against the challenge.
I’ve always found it comforting and appropriate that one of the reasons for abolishing capital punishment was the possibility, and proven occurrence, of wrongful death. Ironically, there is no protection against it in this act. The worst criminals have better protection than some of our most at-risk citizens.
Despite what supporters still claim, opposition to assisted suicide in New Zealand is not always based on religious grounds. While some disabled opposition will be based on sincerely held faith-based views, the majority of disabled people here and internationally are opposed on the grounds of hard-fought and hard-won human rights protections that they are desperate to protect from the erosion this act allows.
Disabled people live on the front lines of the health system in a society that increasingly devalues old, ill and disabled people. Most of the reasons people give for wanting assisted suicide are really disability issues like dependence and independence, without understanding that we are all interdependent. Supporters of the act call for choice. Disabled people want social justice.
Robyn Hunt is joint co-ordinator of Not Dead Yet Aotearoa, a focus for disabled people’s voices in NZ opposing assisted suicide and the End of Life Choice Act.
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