Last rights

by Rebecca Macfie / 28 May, 2015
The case of Lecretia Seales vs the Attorney-General, heard this week, in which the Wellington lawyer pursued the choice to die with dignity, represents two sides of a deeply polarised debate.
LastRightMain
Lost Horizon by Ruth Sorenson. Getty Images


A matter of dignity for a dying woman who wants help to end her life when her suffering becomes intolerable or a journey across the legal Rubicon? A mere clarification of the law guaranteeing her fundamental human rights or a far-reaching reform of the law that would allow the deliberate taking of life?

The case this week of Lecretia Seales vs the Attorney-General placed in the hands of Justice David Collins the debate New Zealand’s parliamentarians have chosen to avoid: whether terminally ill people ought to have the right to seek medical assistance to end their lives at a time of their choosing.

Seales, 42, is suffering an incurable brain tumour diagnosed when she was 37. She is increasingly disabled by her illness and is expected to live another two to 17 months. This week’s proceedings at the High Court in Wellington were brought about by her plea for a declaratory judgment that would mean her GP would not be prosecuted if she prescribed or administered a lethal substance to end Seales’ life.

There was no common ground between the plaintiff and the defendant. Indeed, even the language of this deeply polarised debate was in dispute. Seales’ lawyers, Andrew Butler and Chris Curran, spoke of “aid in dying”; representing the Crown, Solicitor-General Mike Heron QC and Paul Rishworth QC insisted on using the words “euthanasia” and “assisted suicide”.

Seales was described by her lawyers as facing a “cruel” choice between suffering the worsening ravages of an illness that is already robbing her of her mobility, vision and independence, and exploring a “secret and lonely” suicide while she is still physically able to take her own life.

The Crown’s lawyers dismissed such language – used by the Supreme Court of Canada in the recent landmark Carter decision legalising assisted dying – as a “rhetorical flourish”. Seales did have choices, they said. She had available to her “the full array of funded medical care including palliative care available to all New Zealanders who are eligible, as she is”.

Seales fears palliative care will not be enough to manage her pain or alleviate symptoms such as loss of ability to swallow, inability to communicate and agitation. Nor will it necessarily ease her psychological and emotional suffering, and her pain may be such that it will be controllable only through total sedation, which she would find intolerable. She fears the prospect of becoming bed-ridden and incontinent, of losing her mental faculties, of having others deal with her excrement and the consequent loss of privacy and of being “hardly present in my own life” as a result of pain medication. She is enduring “grave humiliation and distress”, said Curran. She faced “overwhelming anxiety” that was “dehumanising”.

The Crown said it was no such thing – her experience was just part of life. “Dependence on others, difficulty in dressing, bathing and other personal matters are unfortunately inherent in human life and in the capacity for misfortune,” said Heron and Rishworth in their written submissions. “It is often unavoidable in the phenomenon of illness and ultimately in dying. It may be distressing, but it is not gravely humiliating and debasing.”

Seales argued that her rights under the Bill of Rights Act are infringed if the criminal law prohibits her doctor from helping her to die when she can no longer endure her suffering. If the law denies her a legal assisted-dying option and she is therefore forced to commit suicide prematurely by her own hand while she is still physically able to, this would deprive her of life.

Wrong, said the Crown’s QCs. It is not the law that is depriving her of life, but her illness. If she took her own life prematurely, it would not have been “forced” upon her by the provisions of the Crimes Act preventing another person from helping her to die. Seales “simply has the obligation … to live under New Zealand law”, said Heron.

The Care Alliance, which alongside the Voluntary Euthanasia Society and Human Rights Commission was permitted to make brief submissions, also dismissed as “untenable” Seales’ evidence that the unavailability of assisted dying amounted to “cruel and degrading” treatment. New Zealand has among the best palliative care in the world, and Seales was inherently directing “unwarranted criticism” at those providers, said the Alliance, which represents a grouping of palliative care and anti-euthanasia groups.

LecretiaSeales
Lecretia Seales. Photo/Hagen Hopkins

ASSUAGING DISTRESS


“I am dying. The relief I seek is about the quality of my death and the management of my suffering,” Seales told the court in her affidavit. “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.”

Whether or not she would avail herself of aid in dying, Seales said she would feel “extraordinary relief” if it was available to her. It would be “one of the most significant things that could improve the quality of my life now and return to me some of my valued autonomy”.

The court was presented with evidence from several experts to back up the proposition that the mere availability of legally assisted dying brings immense comfort to terminally ill patients, allowing them to focus on their remaining time with loved ones rather than worrying about the suffering ahead.

Dr David Grube, a physician in Oregon where the law permits doctors to prescribe a fatal dose to mentally competent terminally ill people, said in an affidavit that only two-thirds of patients who get a lethal prescription actually take the drugs. But “without exception, every patient has found the mere fact of the prescription an immense relief”, he said. The existence of the prescription “assuages distress, and often that is all that’s required”.

He spoke of the traumatic death of a neighbour who did not have access to legal aid in dying. He had terminal cancer and feared the suffering he would face at the end of his life, so he shot himself, causing great trauma to his family.

Dr Peter Reagan, a retired GP from Oregon, said he has written 15-20 lethal prescriptions for dying patients over the years. The effect of the getting the script was “amazing” – patients would “visibly relax”, as if an enormous weight had been lifted from them. “The availability of a life-ending drug removes significant stress and allows them to focus on quality of life with family,” he said. It also allows death to be talked about openly. He described the case of a patient with lung disease who shot himself after being told he may not qualify for life-ending drugs. Another patient, who was suffering from heart and lung disease before the legalisation of assisted dying in Oregon, committed suicide by slitting his wrists with a pair of sewing scissors.

Dr Eric Kress, a palliative care doctor from Montana, where the courts allow assisted dying, described it as “potent palliation”. He too has experience of terminally ill patients who committed suicide prematurely before aid in dying become available.

Dr Elizabeth Smales, a retired New Zealand palliative care specialist, also gave affidavit evidence of people who had killed themselves to end their suffering. One stopped eating and drinking because this was the only means available to her; another, who was suffering from liver cancer, shot himself. Another, who had motor neurone disease, drove his mobility scooter off a cliff, but did not die. Smales said she believes they would not have taken these steps if medically assisted dying was available.

The evidence put before the court suggests that lonely suicide to avoid the suffering of severe illness is not uncommon. Canadian historian John Weaver has studied the incidence of suicide in New Zealand over the past 100 years, based on the analysis of 12,000 coronial files. In his book Sorrows of a Century, he wrote that 5-8% of those who committed suicide – 25 to 30 people each year in the late 20th century – were ill people choosing “self-euthanasia”. He says the documentary evidence from the files shows these were “people with resolve, intelligence and a sense of personal rights. They rejected drawn-out medication. Witnesses’ depositions depict gentle deaths along with frightful ones that in their own way make an argument for assisted suicide.”

Butler
Andrew Butler. Photo/Hagen Hopkins

PROTECTING THE VULNERABLE


Heron and Rishworth argued for the Crown that the law imposes a total prohibition on assisted suicide or euthanasia and that there was no scope for interpretation. To grant what Seales was asking for would entail far more than just a “clarification” of the law – it would impose a new “court-centred statutory regime” in which the courts would be the “gatekeeper” of physician-assisted suicide and euthanasia. Based on the experience in Oregon, the High Court could expect to receive two or three euthanasia or assisted-suicide requests to consider each week.

If Seales’ argument was accepted, it would “run the risk of destabilising the law of homicide”, they said. The matter was a moral one for Parliament to decide, and not for the court to rule on under urgency. Among the implications that had to be properly considered was the impact on “vulnerable populations” – a concern shared by the Care Alliance. Rishworth said there was a risk vulnerable people would choose assisted dying to relieve the burden of their condition on others, or to reduce financial pressure and ensure an inheritance was left for grandchildren.

But Seales’ lawyers argued that the Crown’s claim that the Crimes Act imposed a total ban on assisted dying was wrong and, in the context of human rights, was effectively saying: “You, the individual, don’t count.” The Crown argued assisted dying as part of Seales’ end of life treatment should be barred, yet other end of life decisions – such as turning off life support – were not regulated. Instead, the law in this area was “nuanced” and followed good medical practice, said Butler.

Rishworth said allowing assisted dying would have implications for the delivery of palliative care; Butler pointed out that many of the doctors who gave evidence of their experience in jurisdictions where assisted dying is available actually work in palliative care, and they reported that the quality of that care had increased since the option had become available.

“That’s not surprising,” said Butler. “It’s because it puts the patient at the centre. That’s been the whole movement of modern medicine – to get away from God-like doctors and put the patient at the centre.”

For more on Lecretia Seales’ story and assisted dying, see “Dying wishes” from our January 17 issue at tinyurl.com/NZLchoice; “Live & let die” from our March 21 issue at tinyurl.com/NZLassisted; and “The rights choice” from our April 4 issue at tinyurl.com/NZLrights.

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