One of the many important questions raised by panellists and audience members at last night’s ChalkTalk debate on the End of Life Choice Bill was which voices have so far been absent from discussions about the bill, and indeed, within the draft bill itself?
Concerns were raised about the lack of input from the nursing, Māori and disabled communities, as well as consideration for the whanau of those who may be assisted to die, should the bill pass into legislation.
New Zealand Nurses Organisation (NZNO) co-director Kerri Nuku was a member of the highly experienced panel. Nurses need to be consulted prior to any legislation coming into effect, she says, with primary health care, palliative care and aged care given equal attention in order to prevent flow-on effects.
“We don’t want to get delegated work that we don’t have any influence in.”
NZNO entered a submission on the bill which did not advocate for or against the issue, but instead reiterated the need for consultation with the nursing sector before any legislation comes into play.
“Our primary role is to protect nurses in any legislation that may well roll out into the future. 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.”
Nuku is also concerned about the lack of consultation with iwi. She represents a large group of Māori nurses throughout the country whose role is to engage with communities.
“We talk about death and dying, regularly. We’re not afraid of death and dying. Sometimes I think that the Western worldview compartmentalises death, as opposed to us seeing it as a holistic place for holistic growth and wellbeing,” she says.
“My concern is that we spend too much time looking at it from a clinician’s point of view as opposed to engaging the patient, understanding their cultural context, understanding what does a dignified death look like for Māori.”
Nuku says better access to treatment in timely fashion will increase choices and mana for patients and their whanau.
“Quite a few of them get nursed at home. How do we support them at home?” she says.
“I think that’s the problem, is that we’re outwardly looking in as opposed from the patient’s perspective or the family’s perspective.
“We shouldn’t be making assumptions on behalf of people and yet this does.”
Fellow panellist Claire Freeman says a Dunedin survey has conducted a meta-analysis of all recent surveys on the End of Life Choice Bill and shows a lack of consultation with the disability sector.
Freeman is an advocate for those living with a disability and is currently studying a PhD in health science. She has limited use of her limbs and says New Zealanders have a fear of disability and a lack of understanding around death.
“I think the 70% of people who want this choice are making a choice based on fear,” she says.
“We need to address fear of disability and fear of dying.”
While there may be certain cases – such as that of Lecretia Seales, a New Zealand lawyer who became an advocate of physician-assisted dying after experiencing a brain tumour – most people will not benefit from the introduction of the bill, Claire says.
“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.
“It scares me because I do know of a lot of people that would take this bill up because they do qualify.”
Former Prime Minister Sir Bill English was also a member of the panel.
“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.”
English was concerned by the lack of family consultation and decision making, should the bill come to pass.
“This is what will change our country… no one is consulting family [before a physician-assisted death].”
An audience member, who had been a general practitioner and palliative care hospice doctor for a number of years, also questioned how the introduction of this practice would impact a patient’s family.
“Whenever suicide enters the picture, the grief intensifies. I see in this legislation the potential for family dissention.”
Another audience member voiced concern regarding the unheard voices of people who are close to death and could be deeply impacted by any legislation passed.
However, ACT Party leader and panel member David Seymour, who drafted the bill, says it needs to be passed into legislation because those who would be eligible are currently suffering.
“There are people for and against this issue in every group and I think it would be wrong for anybody to say I somehow speak for a whole group of people,” he says.
“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.”