Three changes to save the euthanasia law

In principle, I support the concept of voluntary euthanasia — but I have deep concerns about it from a disability perspective. 

Indeed, many people in the disability community have grave doubts about the End of Life Choice Bill as introduced by Act leader David Seymour before Christmas, given the impact it could have on us.

Before going any further, my personal view: For many years, I’ve supported voluntary euthanasia but only for people who have a diagnosis of terminal illness and have less than six months to live. The legislation before Parliament provides for that as a ground for assisted dying. While, if I had a diagnosis like that, I would personally not make that choice, I support having the option of assisted death in place for others who may find themselves in that situation.

What troubles me about the Bill is it also extends the right to apply for euthanasia to people who are deemed to have ‘a grievous or irremediable medical condition’. In my view, this crosses an acceptable boundary for me as a person who otherwise supports assisted dying. The definition is too broad in that it potentially provides the ability for any disabled person who lives with a non-terminal health condition or impairment to apply for euthanasia as well.

This is an important consideration, especially in a world where many disabled people face barriers to our participation in everyday life through experiencing discrimination for example finding employment or housing. Some people question our very right to exist and this affects our ability to be seen as full human beings. I do acknowledge, though, that people living with learning and psychosocial (mental health) disabilities will not be able to apply for assisted dying. Despite that, safeguards such as these are few and far between in the legislation.

Another area where the Bill lacks sufficient heft is in ensuring people are not unduly pressured by others into taking the euthanasia route. All too often, society views disability as representing the end of a good life for all people with impairment (as conveyed in the Hollywood film You Before Me). This isn’t necessarily so as, in the vast majority of cases, people who experience disability, especially in later life through either illness or accident, do eventually adjust to their new bodily reality after going through a natural grieving process.

So, absent any reasonable societal understanding on what disability is and is not, this opens the door to the idea that we as disabled people have a poor quality of life, and therefore, what other choice do we have but to end it? This is why many people in the disability community totally oppose voluntary euthanasia given that it presents the credible danger that this could happen, particularly if the grounds are too broad. One only has to look at the Netherlands and Belgium, two countries which initially introduced voluntary euthanasia on a restricted basis, who have in recent years further liberalised their laws to the extent where some people with non-terminal conditions can now choose this option.

For all these reasons, I believe anti-euthanasia campaigners do have valid concerns when it comes to issues like this.

Yet, where I part company with the anti-euthanasia lobby and some in the disability community is over whether some terminally ill people should be able to choose it. If someone, say, develops terminal cancer and has a medically determined limited life expectancy of six months or less and absolutely no chance of recovery, then why should a person in this situation not have the right to end their life at an earlier time and with dignity? Personally, I would never deny a terminally ill person in this situation the ability to take control over their dying process.

I see the End of Life Choice Bill in its current form as presenting both a real opportunity for some terminally ill people to have choice over their death process and, at the same time, a real threat to disabled people due to the possibility that some in my community may wrongly convince themselves or be convinced by others that euthanasia would be the best option.

Part of the solution would be for Parliament to remove the grievous and irremediable medical conditions clause. Another important change would be the inclusion of strong penalties against coercion. A new offence of coercing an unwilling person into euthanasia could be created — potentially as an additional charge alongside existing Crimes Act charges of murder or manslaughter.

The Bill's medical assessment process for euthanasia requests needs to be changed too. Currently, up to three medical personnel (with a minimum of two required) are to be brought into assess any person who applies for assisted dying. I would like to see up to three independent lay personnel (who would be trained in legal, disability and human rights issues) assess all applications as well. The proposed Review Committee which would monitor the law’s implementation should also include lay representatives particularly from the disability, ageing and legal communities to complement representatives from the medical profession. This would ensure a more balanced perspective in all discussions on voluntary euthanasia by the committee.

If all three of these proposed safeguards are incorporated in the Bill, then it would serve a useful purpose in providing choice for people who are genuinely terminally ill whilst safeguarding the rights of disabled people and people with non-terminal health conditions. If that scenario eventuates, I would support the legislation and vote yes in any referendum. Conversely, if all three of the safeguards outlined above are not included, then I would not support the bill and vote no in any referendum.

For all our sakes, if this law is to pass, politicians have to get the balance right and think things through thoroughly to avoid any pitfalls.

Chris Ford is a freelance writer and a disabled person who lives in Dunedin. The views expressed in this article are strictly his own. He acknowledges that there is a diversity of opinion on euthanasia in both the disabled and wider communities in Aotearoa/New Zealand.

The Seymour bill is before Parliament's health select committee. Public submissions close on February 20.

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