“I believe I would have cared for close to 1000 palliative patients in my time as a nurse. Of those people I can think of one patient where I felt the situation was hopeless and she would have benefitted from physician assistance, as she starved herself to death in the end. ”
This was the experience of a Health Central reader, one of many correspondents to pose questions for the panel of experts gathered last night at NZME Wellington to discuss the End of Life Choice Bill as part of Health Central’s ChalkTalks series.
The reader’s question was: should we have legislation available for the benefit of the one in a thousand?
This is essentially what last night’s panel discussion boiled down to: what systems and solutions do we have in place for the rare and extreme cases where people are in such dire stages of suffering that it is unbearable, or as in our reader’s words, “hopeless”?
The panel was in agreement that no one should find themselves in this plight – one of the few points of consensus reached in the evening’s discussions. Where they parted ways was their opinion of the systems in place to help these cases.
ACT Leader David Seymour believes the answer lies in his End of Life Choice Bill, which seeks to legalise assisted euthanasia in a medical setting for people with terminal illness or grievous and irremediable medical conditions, if this is their wish. It was drawn from the ballot in June 2017 and is currently before the select committee who are due to report back shortly.
Seymour is open to the Bill being tweaked and changed; he even said he doesn’t expect the “grievous and irremediable medical conditions” clause to remain if it goes through. It’s the essence of the Bill which is important to him. His Bill would have given Lecretia Seales the choice she wanted. Seales was diagnosed with terminal brain cancer and fought hard for the right to end her suffering on her terms; her story has been instrumental to the development of the End of Life Choice Bill.
“It is possible to design legislation that gives safety and protection to those who want nothing to do with it and choice to those who do,” said Seymour.
This point was refuted by some on the panel, arguing that the Bill didn’t carry the necessary safeguards to prevent it being exploited.
However, retired ICU specialist Dr Jack Havill was clear in his support for the Bill. He argued that the current practice of “slow euthanasia” is not acceptable and leads to “bad deaths”, something no one wants for themselves or their loved ones.
“I think one day we’re going to look back and think ‘why did we let so many people suffer?’,” said Havill.
Visiting palliative care expert from Canada Dr Leonie Herx took a very different view. Herx believes palliative care is “medically assisted dying” – in fact, she takes exception to the term being used interchangeably with euthanasia – and she says effort should be poured into improving our palliative care services and not into passing the legislation on the table.
Herx took a dim view of the legislation in Canada and expressed her concern at New Zealand taking the same path.
Even for the most extreme cases, like the one in a thousand, Herx favoured palliative sedation over any form of euthanasia.
Former Prime Minister Sir Bill English is also staunchly opposed to the Bill – and ultimately he feels that legislation in any form would not ever make it right for a doctor to end a life.
“Just one wrongful death is one too many,” he said.
Claire Freeman provided a deeply personal perspective on the issue. As a tetraplegic as a result of a car accident, she told the audience about her attempts at suicide, and her attempt to seek a physician-assisted death in Switzerland where it is legal. As the panellist with the closest personal experience with this, she appeared more open to finding the right solution for people like Lecretia Seales.
However, she doesn’t believe that solution lies in the End of Life Choice Bill, seeing it as too open to exploitation especially in the case of vulnerable people, including the elderly and the disabled.
“I think the 70% of people who want this choice are making a choice based on fear…we need to address fear of disability and fear of dying,” she said.
English agreed. “You’ll get an assumption in the disability community that their life is worth less because they’re defined in legislation as people who can choose to get killed.”
Kerri Nuku representing the New Zealand Nurses’ Organisation argued that we shouldn’t be making assumptions and decisions based on what we think others want, especially when it comes to matters of death and dying.
Nuku also expressed concerns that Māori perspectives were largely absent in these conversations so far.
Interestingly the nursing organisations have not “picked sides” like other health sector bodies, such as the New Zealand Medical Association and hospice and aged care associations, all of which are opposed. Instead the nurses argue for more inclusion in this area of health, as they are the practitioners at the coal face, the health professionals who have the most contact with the one in a thousand.
Of course, the 0.1% is anecdotal. The members of the panel each drew heavily on evidence-based research to support their claims and at times the discussion diverted to disputing each other’s research sources. Without a live fact-checker on hand, this swordfight of studies proved somewhat futile in the heat of the debate.
Ultimately, the discussion came down to the question of whether New Zealand should pursue legislation in this area or not. And at this advanced stage of the ongoing debate, most people appear to have staked a clear spot on either side, leaving very few left teetering on the fence.
While no one on the panel disputed the need to improve and better fund palliative care services (another rare point of consensus) the solution of relying solely on palliative care for the most extreme cases – the anecdotal 0.1% – felt somewhat tepid. But equally, as the ins and outs of the End of Life Choice Bill were dissected, it became apparent that many people are uncomfortable with how the legislation is currently poised, and many fear that it will be used beyond its intent.
So, our reader’s question is one without a clear answer. But what is important is the conversation had about this topic. The views on this subject, however diverse, however confronting, are all valid and have a place in these discussions. And that was the best achievement from last night’s debate, as the select committee prepares to report back in the coming days.
We did not get an opportunity to put all our readers’ and audience members’ questions to the panel. Please send them to firstname.lastname@example.org and we will endeavor to keep the conversation going.