Possible changes to End of Life regime

The Herald reports:

The End of Life Choice Act needs changes when it comes up for review later this year, say both the architect of New Zealand’s assisted dying laws and hospice leaders.

An area Seymour would like to see changed is the eligibility for assisted dying only being available to terminally ill adults with fewer than six months to live.

That compromise was made during the parliamentary process to appease the Green Party to ensure Seymour got the votes he needed to pass the bill.

Seymour believes the six-month timeframe should be scrapped because “it’s a shame that some of the people who suffer the worst are still unable to access the law”.

I agree. The Greens were worried about the disability community, but it means the law can’t be used by someone who had Huntington’s disease or Alzheimers. You can end up unable to move or speak. But because you can never be assessed as likely to die within six months, you can’t avoid a terrible fate. Extending the law would give those who suffer from Huntington’s disease the option of an assisted death. Many kill themselves anyway as their disease progresses.

Totara Hospice chief executive Tina McCafferty agreed and would “at best like to see that timeframe removed, or extended to 12 months”.

“That’s because prognosis is both an art and science, and you can’t always get that right,” she told RNZ.

The criteria I would support are either a terminal prognosis if within 12 months on an incurable degenerative disease.

Another area where there was consensus for review were the rules that stopped doctors from being able to discuss assisted dying with their patients – with patients needing to raise the medical intervention with their doctor.

Totara Hospice in Auckland is currently the only one in the country that offered the act of assisted dying on its premises.

McCafferty said the “gag clause” on doctors was “at odds with the actual responsibilities of healthcare professionals, where there’s an obligation to inform patients of all choices they can have in their care”.

She wanted that clause removed because “there’s a bias in that it leaves it up to articulate patients to raise their needs in that way”.

“Not everyone is articulate when it comes to health literacy, and I want to see that potential bias or inequity mitigated.”

Hospice NZ chief executive Wayne Naylor said the so-called gag clause was challenging “because you don’t want to put that idea into someone’s head if they haven’t thought of it, but we’re also thinking about a person’s right to have all the options laid out in front of them before they make a decision”.

The gag clause was put in as a caution against doctors trying to push patients towards an assisted death. But we trust doctors in all other areas to lay out the pros and cons of various options without bias, and they generally do that.

I recall an obstetrician telling me after a caesarian elective that she was so so pleased that decision was made, as it was so obviously the right one for the mother. But she never said this before the birth – she just gave options and pros and cons.

Naylor said hospices’ approach to assisted dying had evolved a lot, but warned against changes being made to the laws based on a small number of complaints.

“In the beginning it was very challenging and unclear to some extent how some hospices should respond. Certainly over the last three years there’s been a change.”

He said the majority of hospices now allowed assessment for eligibility of assisted dying to take place on site and support services were extended to families who had a loved one use assisted dying.

This is great news. The hospice swore vehemently against the law, and it is good to see that they have a more nuanced position now.

Napier’s Glenn Marshall wants to see assisted dying made available to those who make their wishes clear in an advanced directive before their illness means they lose the option altogether.

Absolutely. I would do an advanced directive.