Yesterday the Justice Select Committee reported back on the End of Life Choice Bill.
At times consultation on various laws or policies feels rushed and token. Not this time, not this topic. A record 39,000 written submissions were made over the course of 16 months and 1350 submitters were heard at 42 public hearings in 14 towns across New Zealand.
What’s next for the End of Life Choice Bill?
The Committee has referred the bill back to the House with some minor adjustments but did not recommend any substantial changes, leaving these to be debated in the House.
The Committee wants to see the bill aligned with existing legislation and regulations, the complaints process strengthened, and it made explicit that if coercion is suspected the person becomes ineligible for assisted dying.
MPs will now vote for the second time on the bill. The Bill is likely to come back for second reading on 22 May, 2019.
ACT Leader David Seymour, who introduced the bill, says he will put forward further amendments to be debated in the House, including a provision for a binding referendum on the commencement of the Bill at the General Election.
He will also recommend limiting eligibility to terminal illness only and making it clear that assisted dying cannot be accessed by reason of mental health conditions, age, or disability only.
He will also recommend expanding membership of the Support and Consultation for End of Life New Zealand Group to include nurses, Māori and Pasifika representatives, and disabled persons representatives.
Where does the discussion need to focus now?
The submissions have been overwhelmingly opposed to the bill – but perhaps this illustrates that the submitters have been more motivated in their opposition than those who support the legislation. This is perhaps why the polling presents a different result. Should the question be posed to the public by referendum, it will be interesting to see what will emerge.
That is why the discussion needs to look beyond how many are for and against. Instead the discussion needs to look at the opportunities and risks this legislation could pose to New Zealand.
Last week’s Health Central’s ChalkTalk panel discussion on the End of Life Choice Bill attempted to do just this. Here are some of the key issues to come under debate by the diverse panel of six.
Is the bill watertight?
In its current form, not yet.
David Seymour indicated that the bill needed further refinement, and his latest amendments to the bill reflect this.
Sir Bill English agreed it wasn’t safe in its current format.
“We’ve got common ground here, this is a very dangerous this to do,” he said. “We’ve always found it hard to cross that line and the reason why we find it hard is because killing people is dangerous.”
There are mixed reviews from other countries that have adopted legislation of this nature.
Dr Leonie Herx offered her perspective of the situation in Canada, where such legislation has been passed.
“We thought we had it nice and tidy in our legislation but in reality that doesn’t.”
A question of eligibility
Claire Freeman felt that while the bill might be appropriate for certain cases, the risk of it being exploited by a much larger group of people who could claim eligibility outweighed this.
“It scares me because I do know of a lot of people that would take this bill up because they do qualify,” she said.
“There will be people like Lecretia Seales and there will be those cases but we need to look at the bigger picture and look at who will also be affected by this bill.”
Bill English agreed.
“The lives that fit in that definition are always vulnerable people.”
“People’s will to live fluctuates, especially if they’re old or vulnerable.”
“You 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.”
The slippery slope
Bill English felt certain the eligibility criteria would be expanded if the legislation was passed.
“There’s no example of legislation in the world where you can lift the ban on killing without the logical progression.”
Dr Leonie Herx offered her perspective.
“It will become a human right and everyone will say, why am I not eligible?”
“You can’t put the genie back in the bottle.”
However, David Seymour refuted this.
“People have studied this all over the world and the Ministry of Health has issued a report in our parliament and there is no connection between legalizing assisted death and youth suicide,” he said.
How do we avoid a ‘bad death’?
“We don’t know what a bad death looks like,” said Dr Herx.
“When they’re screaming, it’s bad,” responded an audience member.
“That’s when palliative sedation is appropriate,” responded Dr Herx.
This is an aspect where many people part ways on this topic. Is palliative care the best answer to a “bad death”?
Dr Jack Havill doesn’t think it is for every case, and argued that assisted dying was preferable for many than a drawn-out, painful death full of suffering.
“I think one day we’re going to look back and think, ‘why did we let so many people suffer?’”
David Seymour agreed.
“My contention is that we need change because what people are put through at the moment is frankly in many cases barbaric even with the best of palliative care.”
“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,” he said.
What about the effect on the medical profession?
NZNO’s Kerri Nuku felt it was important for nurses to be included in the scope of any legislative change in this area.
“We don’t want to get delegated work that we don’t have any influence in.”
“The problem that we’ve had and faced previously is legislation has happened and we’ve just inherited stuff so this was a proactive principled approach to make sure the professional role of nurses is maintained,” she said.
Dr Herx said there are fewer practitioners who want to do assisted dying in Canada than when it was first introduced.
“It changes you as a person.”
“There is growing evidence that even if health professionals agree with the practice, it changes and affects them.”
What about the effect on family?
Another audience member, a GP, felt the legislation could severely affect families.
“Whenever suicide enters the picture, the grief intensifies. I see in this legislation the potential for family dissention.”
Dr Herx agreed. “It’s extremely distressing for families to go through it and there’s also significant disagreement between families.”
Claire Freeman, speaking from her experience of someone who nearly went through with assisted euthanasia in Switzerland, said she didn’t give a thought to the pain and distress it would have caused her family.
This is just a small taste of where these discussions have landed in recent weeks, but it is clear there is plenty more debate to be had as the End of Life Choice Bill continues its polarising journey.
David Seymour says 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. Given the strong views both for and against the legislation, this is where the bill needs to really stand up, if it is to make its way into New Zealand law.