In his latest column, ‘A Different Light’, Jonny Wilkinson shares his ruminations on the ethical minefield of the End of Life Choice Bill currently before Parliament.

“When your number’s up, your number’s up.” That was one of my father’s favourite sayings.

He also used to say; “I’m made of steel springs”, meaning that he was indestructible, when my mother was chiding him for overdoing it. He wasn’t indestructible of course, when he died of secondary cancer at the age of 67. He had a ‘good’ death. He died at my brother’s house with his family around him. We took pretty good care of him, particularly my brothers and their wives - two doctors, a senior nursing tutor and an anaesthetist. Not everyone has access to such expert supports within their whanau when the time comes. Yes, one can have a ‘good’ death or a ‘bad’ death – the spectrum is broad.

Death and taxes, tide and time; it’s all pretty inevitable. What isn’t so inevitable is the End of Life Choice Bill before Parliament, currently in Select Committee with submissions closing on 20 February. It’s a complex and very personal matter, polarising people.  Some religious factions are very opposed to the Bill and the concept of euthanasia. There is also strong opposition to euthanasia from the disability community. Disabled factions who are against the Bill feel that disabled people can be very vulnerable to influences around them and that euthanasia has the potential to devalue what it means to live with a disability. They worry that the right to die can easily morph into the duty to die. Sometimes, Christian values and disability rights converge to the same ends for different reasons. Down Syndrome screening is another phenomenon of agreement from different perspectives, with many Churches being pro-life /anti-abortion come what may, whereas parents of people with Down Syndrome simply want parents to be making informed decisions with balanced information about their child to be.

Me? Personally? Well as always I believe that disabled people should have the same rights and choices as everyone else.

Decades ago in the past, I used to say frivolously to my daughters “When I get past it, you can take me out with the rubbish”. But after numerous incidents of being in the dog box with Sally and having to hose and scrub the wheelie bin as part of my laborious journey back into her good books, I have changed my mind on the rubbish idea as a good exit strategy from this mortal coil.

My first acquaintance with the Bill was listening to an interview on Radio New Zealand with David Seymour, in which the Bill sounded fairly sophisticated, with enough checks and balances to ensure that the person in question was making an informed and measured decision. Initially, I thought the Bill only made provisions for people with a terminal illness. However, when I sat down and read the Bill, I realised it was also for people with “a grievous and irremediable medical condition”. I thought grievous, now there’s an interesting adjective, for it can be open to interpretation.  A couple of weeks ago I was at a meeting where I’m sure the person sitting next to me thought I had a ‘grievous’ condition; mind you, I found his demeanour fairly grievous myself.

But reading further, the eligibility for assisted dying is someone who:

  • suffers from a terminal illness likely to end their life within 6 months or has a grievous and irremediable medical condition
  • is in an advanced state of irreversible decline in capability
  • experiences unbearable suffering that cannot be relieved in a manner that he or she considers tolerable
  • has the ability to understand the nature and consequences of assisted dying

Okay, so when I read through these, I came back to feeling satisfied that the Bill is sophisticated enough, and has enough checks and balances, to protect vulnerable people from hastily making choices that are influenced from forces other than their own.  My understanding is that Maori, generally speaking, turn the whole whakaaro of euthanasia on its head. They look at life and Mauri as a taonga and that decisions about that taonga aren’t up to the individual, but the whanau as a whole. It is a very complex issue that deserves full and open discussion.

At the moment, I find myself still going around and around this issue about our mortal coil.

Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception. A Whangarei based disability advocacy organisation.

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A Different Light - Northern Advocate column 19 February 2018 pdf 195 KB

Published 19/02/2018

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