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May 14, 2018 | by  | in Features |
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Our Dying Right: Perspectives on End of Life Choice

In 2015, Wellington lawyer Lecretia Seales made news by petitioning for the right to a physician-assisted death. She was 41 years of age, with an inoperable brain tumor, and several months left to live.

Shortly before she passed away, Lecretia’s husband, Matt Vickers, relayed to his wife that the High Court had ruled against them. Lecretia was not able to speak, but was still mentally competent. Remembering this moment, Matt later told the press: “There was no mistaking her response. She was hurt and disappointed. She fixed me with a stare with her good eye as if to say ‘Isn’t this my body? My life?’ Her breath slowed and she turned her head away. Her reaction utterly broke my heart.”

A new attempt at assisted dying legislation in New Zealand has recently reawakened memories of Lecretia’s case, and has faced both significant support and significant opposition.

David Seymour, Epsom electorate MP and leader of ACT New Zealand, introduced The End of Life Choice Bill in June of 2017. It recently passed its first reading. A flood of public submissions followed, and the Select Committee is preparing a report to recommend changes before the Bill goes through a second reading.

New Zealand holds a vast array of deeply held convictions on the topic of assisted dying. Some, like Lecretia, contend that the right to die with dignity is an essential part of human freedom. Others raise questions about coercion, vulnerability, and whether or not it is possible to write a “safe” assisted dying bill.

“Assisted dying” takes more than one form. A physician can administer a lethal dose of medication to a patient who doesn’t want to give it to themselves, or who physically can’t. Or, a patient may self-administer under a doctor’s supervision, which is sometimes called assisted suicide. Many people and countries draw a line between assisted dying, assisted suicide, and “passive euthanasia,” which usually means that death was brought about by the absence of care. A doctor might withdraw or withhold treatment, like turning off life support. Passive euthanasia is already legal in New Zealand.

In David Seymour’s End of Life Choice Bill, there are quite a few conditions you have to meet to be able to access assisted dying, passive euthanasia, or assisted suicide.

You must be 18 years or older, a NZ citizen or permanent resident, and you must also suffer from a terminal illness likely to kill you within 6 months, or a “grievous and irremediable” medical condition such as or Huntington’s or Parkinson’s disease. In addition to these conditions, your circumstances must be advanced and irreversible, you must be experiencing unbearable suffering, and you must be of sound mind, able to communicate your decision and understanding of assisted dying to your physician.

The Bill allows your doctor conscientious objection. If they do not feel comfortable with euthanasia, they are allowed to refuse and refer you to someone else.

A few weeks ago, I went to a press briefing hosted by Hospice New Zealand. I arrived a little early, and most of the panelists came up to say hello, welcome me in, and offer water, a lolly, and a seat. While they were kind to all of the journalists (and I think it takes a kind person to go into palliative care) they seemed very enthusiastic to see a student paper present. One of the organizers approached me afterwards and commented that it was exactly the young, student age group, who should really think about our values around death and dying.
Hospice NZ also invited panelists from Australia New Zealand Society of Palliative Medicine (ANZSPM) and Palliative Care Nurses New Zealand (PCNNZ). The speakers were all decidedly against the End of Life Choice Bill. They argued that New Zealand patients are not referred to palliative care often enough, and that people might opt for euthanasia without being aware of all their options. Palliative care is not well funded enough to be accessible to everyone in New Zealand. If everyone had access to good end of life care, they argued, no one would want euthanasia.

The panelists were practicing physicians, palliative care specialists, and nurses. Many of them had known patients who, in their eyes, had “internalized” the pressure to not be a burden on friends and family. Prof. Rod MacLeod of Hospice NZ said that it is “impossible to detect coercion from behind a closed door,” and that this Bill would do a poor job of protecting the vulnerable in their last few weeks and months.

The next week, I met Ann David, a campaigner for the right to die with dignity. We sat in the National Library and spoke in a quiet corner as passers-by came and went from the Signatures that Shape New Zealand exhibit. She came prepared with a collection of bookmarked materials, which she used to rebut common arguments against assisted dying.

Ann has been involved in this debate since her mother passed in an Australian hospital under a process called “Terminal Sedation”.

Terminal sedation, or palliative sedation, is currently legal in New Zealand. It is considered a form of passive euthanasia. Ann described the procedure with distaste: the doctors removed all medication except enough sedative to help her mother sleep. They also removed nutrition and hydration, and delivered an enema so that no distressing bacteria could build up.

Ann’s mother had suffered a series of strokes that left her paralyzed, and eventually, unable to see or communicate. She was “locked inside” her body. When Ann realized that her mother had no chance of recovery, she spoke with a doctor about her options. She “didn’t realized what was involved at the time,” she said, but “wasn’t asked to sign anything. Straight after our conversation in a hospital corridor, the doctor instructed heavy sedation and a discontinuation of nutrition and hydration until death. It took nine days”.

Because she was in a state where she could not communicate, Ann’s mother would not have been able to opt for assisted dying under this Bill. However, Ann finds it “duplicitous” that terminal sedation is permissible where assisted dying is not.

Terminal sedation and other types of passive euthanasia are often considered ethical because they aim to relieve suffering, rather than hasten death. The Hospice NZ physicians felt that, morally, easing suffering while allowing someone to die naturally fell within their roles as doctors and nurses, whereas assisted dying “has nothing to do with medicine,” as Dr. Ian Gwynne-Robson of ANZSPM said.

Ann disputed this distinction. “I wouldn’t call terminal sedation passive,” she stated, commenting that doctors have to realize that they might be hastening the end of life when they remove care. “I cannot for the life of me understand why the church and palliative care can condone a longer, drawn out death,” Ann explained further. “I find it extremely cruel. My mother died in her late 80s. What purpose did this serve, that last indignity done to her body? We need to do better.”

Ann finds the current Bill to be a safe step forward. She made a submission to Parliament recommending that two clauses be added for reassurance: that “disability alone” and “mental health alone” will not count as “sufficient grounds for assisted dying”.

Further amendments to the Bill are likely to make it “even safer,” added Ann.

Dr. Salina Iupati, a palliative care specialist with ANZSPM, voiced a concern to me about wrongful deaths before the formal Hospice event began.

Any review board for this Bill, she said, would be a “cloak of medical legitimacy” hiding the true difficulty of telling whether or not a death was above board. After a person is dead, it is extremely difficult to tell if there was coercion, if the patient was of sound mind, or if a doctor made the right decision. In the Netherlands, four cases have recently been raised for review, and the results of these inquiries might tell us more about how effective a review board can be.

When I asked Ann about the problem of oversight, she nodded. “I hear the argument. I go back to the point that we don’t have any review for terminal sedation at the moment, or for requests to switch off life support, or the discontinuation of treatment… so [the End of Life Choice Bill] will be the best reviewed, most scrutinized and most examined process in the country.”

Implementing an assisted dying bill safely is a policy issue. Underneath that policy issue lie countless deeply personal questions, such as where the boundaries of personal autonomy lie, and whether or not there is a time at the end of life where suffering eclipses all meaningful experience. Ann, the Hospice panelists, and the people who made submissions on the Bill have had experience answer some of these questions for them, one way or another.

Lecretia Seales had also answered those questions for herself in 2015. In her statement of claim, she spoke clearly about what lead her to her decisions:

“I have lived my life as a fiercely independent and active person. I have always been very intellectually engaged with the world and my work. For me a slow and undignified death that does not reflect the life that I have led, would be a terrible way for my good life to have to end.
I want to be able to die with a sense of who I am and with a dignity and independence that represents the way I have always lived my life. I desperately want to be respected in my wish not to have to suffer unnecessarily at the end. I really want to be able to say goodbye well.”

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