Lecretia's Choice

by Matt Vickers

  Dr Phillipa Malpas, a senior lecturer in psychological medicine at Auckland University, told the story of a woman named Gloria who had suffered cardiovascular disease. Rather than endure a drawn-out death through her illness, she decided to dehydrate herself. ‘If I’d had Nembutal in my cupboard,’ Gloria said to Dr Malpas in her final days, ‘it might have given me a little more time. That is the key. If you know there is a way out, you can focus on what life has to offer. You can balance the pain and suffering because if it gets to that point, you can end it.’ Gloria died after enduring nine days of dehydration.

  Another witness, whose name was suppressed, testified with a personal story about his wife, who was dying of a rare case of melanoma on her brain and spinal cord. It was a tremendously painful illness, unresponsive to medication. She had spent eight months of her life paralysed and incontinent. She hated morphine as it put her in a stupor. She had much to live for but she was unmistakably dying. While she was able, and before she was paralysed, she bought Nembutal online, risking prosecution. ‘Once she had the Nembutal in her possession,’ said the witness, ‘she stopped focusing on dying and began to focus on living again.’ Ultimately, after months of being paralysed and incontinent, she decided that the time had come for her to take the drug. She did, and died peacefully. Her husband, though shattered by grief, was glad she hadn’t suffered more than she was willing to bear. He did not see his wife as a suicide—the very word was offensive to him—but as someone who lived with a fatal illness, and refused to be its victim. Not only did his wife not have to endure more than she was able, he did not have to deal with the grief of her taking her own life violently, or watching her in agony until she drew her last breath. It was what she wanted.

  Reading these affidavits and discussing them together clarified our thinking. We both believed that, like murder, suicide is wrong. The taking of another’s life is the worst of all crimes, and the taking of one’s own life is the worst of all tragedies. Like most New Zealanders, both Lecretia and I had experienced the great sadness that comes from knowing people who take their own lives too soon. Lecretia and her high school girlfriends lost three boys they were close to in a spate of suicides in the 1980s, and she saw the terrible impact their deaths had on their families and friends—but not all self-elected deaths should be regarded as suicide.

  A good example is the tragedy of 9/11. In the doomed towers, the innocent office workers faced a terrible choice: perish in the flames or fall to their deaths. To the moral absolutist, those who chose the first were victims of murder, and those who chose the second were suicides. To the human being, there is no such distinction—only the choice between a slow painful death or a quick, violent one. When death is inevitable, that is the only choice that has any importance. The chief New York medical examiner, Charles Hirsch, thought so too. He refused to classify the people who had jumped to their deaths as suicides or ‘jumpers’. They were victims of terrorism. No sane person would call those people suicides for taking their own lives in that situation. How can we look at a dying person who wants to make a choice about how they die, and condemn them for wanting to minimise their own suffering? Is it always suicide when you take your own life? Is it always murder when you take another’s? Are there degrees of murder and suicide? Courts were already grappling with these distinctions, and in New Zealand Lecretia intended to force the issue. Lecretia’s illness was her burning building.

  We knew we were on the right side of the debate. All the examples of palliative care working in patients’ interests didn’t mitigate the examples where it didn’t or couldn’t. People were suffering against their will, and assisted-dying legislation had the potential to bring those people some relief.

  The next affidavits submitted to the High Court were those of the interveners: the Care Alliance, arguing against us, and the Voluntary Euthanasia Society, who were arguing in support of us. The Voluntary Euthanasia Society provided two affidavits.

  The first was from the president of the VES, Jack Havill. He outlined his own experience as an intensive care doctor, and how his interactions with dying patients had crystallised his views on assisted dying. He had been involved in shutting off life support in hundreds of cases, nearly always with patient consent or with the consent of the family, and he said he failed to see the ethical distinction between this act and the act of prescribing or administering life-ending medication.

  The other affidavit from the VES was by a Canadian historian, John Weaver, whose book Sorrows of a Century was about suicides in New Zealand between 1900 and 2000. After reviewing over 12,000 coronial inquests he found that between 5 and 8 per cent of suicides annually were committed by terminally or irremediably ill people. These findings provided strong support for the argument that, with assisted-dying legislation, at least some of those people might have lived longer.

  The Care Alliance was limited to presenting affidavits on the effects of assisted dying on the disabled community. The first was presented by Wendi Wicks and Robyn Hunt, key members of Not Dead Yet Aotearoa. They outlined examples of public services discriminating against the disabled, and of societal attitudes causing the physically impaired psychological distress and making them vulnerable to abuse. The affidavit went on to assert that legalising assisted dying for the terminally ill would somehow compel the disabled to consider assisted dying as an option, and that doctors might promote or even recommend assisted suicide to someone with an advanced disability.

  These concerns have not been borne out in any country that has implemented assisted dying. In every jurisdiction with assisted-dying laws, a patient must explicitly request assisted dying: doctors cannot bring it up as an option and if they do they risk being reviewed for professional misconduct. It doesn’t matter if the patient is terminal, or disabled, or depressed. The rules are clear. A complaint from a patient is all it would take for a doctor to be investigated and potentially disciplined.

  Lecretia and I both supported disability rights: Lecretia was fast becoming disabled herself, and had availed herself of the many concessions and public services that our society offers disabled people, but we could not see how those rights extended to entrenching the suffering of the terminally ill.

  Dr Huhana Hickey, a founding member of Not Dead Yet Aotearoa, submitted an affidavit that was a personal account of how assisted-dying legislation would affect her. Dr Hickey has primary progressive multiple sclerosis. If Lecretia decided that her life was not worth living because of her symptoms, others might decide that Dr Hickey’s life was not worth living, she argued, and that might influence her own self-view. This ignored the fact that not one of Lecretia’s family members, or friends, or witnesses would ever assert that Lecretia’s life was not worth living, and no one was making that point now. This would be her own assessment, made according to her own values. The judgments of others were irrelevant, carrying no weight, and nor would they carry any weight in Dr Hickey’s case.

  The one example that Dr Hickey cited was the 2012 case of the forty-five-year-old Belgian Verbessem twins, Marc and Eddy, who had been born deaf but were about to go blind, too, and who opted to be assisted to die. She called this ‘chilling evidence that an idea that starts with compassion can readily lead directly to the killing of people with disabilities because of their disabilities’. But not only were the twins acting in accordance with their own wishes, which they made clear to their doctor and their family, but their deafness and imminent blindness were compounded by other degenerative health problems. It has since been revealed by Australian broadcaster Andrew Denton that the family of the twins are distressed that their case is used by anti-assisted-dying advocates as an example of Belgian laws gone wrong. It is hurtful to the twins’ family, and disrespectful to the twins. According to the twins and their family, the decision was freely made, after months of discussion with the family doctor, and not undertaken lightly. It was well within the parameters set out by Belgian law.

  The weekend after we received the interveners’ affi
davits, Geoffrey Palmer and his wife Margaret hosted a dinner for Lecretia in Wellington. Friends came from Auckland and from Christchurch. Lecretia was now in a wheelchair, unable to walk unassisted, and her appearance was possibly a shock to some. Her right eye squinted and her left bulged, giving her face an uneven appearance. Her left hand hung uselessly in her lap. Her speech was slurred. But these things were of no import to her, and she enjoyed herself immensely. She beamed as friends arrived, and was delighted to catch up with all the gossip. She took the chance to pin down her counsel, Andrew Butler, who was also there, and quiz him about the affidavits thus far.

  Our plan the following week was for Lecretia and I to spend a few days in Auckland, eating and drinking and having fun. But sadly it was becoming apparent that travel was going to be almost impossible. Lecretia’s sense of her own body was failing her—her need to go to the bathroom was often sudden and insistent, but being in a wheelchair, her ability to get there was diminished. Negotiating taxis and flights and unfamiliar hotel lobbies and restaurants all seemed too difficult, and I cancelled the trip. Lecretia was upset, and I told her I would make it up to her.

  The defendants’ affidavits arrived after 9 May, and I began the task of reading them to Lecretia, as the words swam when she tried.

  Many of the affidavits made her angry. The most irritating, arguing on behalf of the attorney-general, was that of Baroness Ilora Finlay, a professor of palliative medicine active in the anti-assisted-dying movement. She had visited New Zealand in 2012, funded by the Catholic Church, and had spoken about palliative care.

  Although Ilora Finlay admitted in her affidavit that palliative care is not a panacea, she stated that advances in palliative care had lessened the need for assisted dying. She implied that in cases of patients seeking assistance to die, something else was at work beneath the surface: vulnerability, coercion, a lack of mental capacity, a doctor’s influence. None of these things applied to Lecretia. The baroness claimed there had been an increase in suicides in Oregon and the Netherlands after assisted dying had become legal. She took issue with Dr Munglani’s evidence on pain management, Dr Smales’ real-world experience and Dr Ashby’s statements on the value of holistic care. She did not refer to Lecretia much, but claimed that the way to add quality to someone’s life was to listen. But the implication, as I saw it, was that one should listen without hearing, ignoring the patient’s clear and consistent requests. The baroness recommended distracting the patient—perhaps, incredibly, by providing a hairdresser. She thought that reducing Lecretia’s steroids might improve her mood and attitude. We had tried getting Lecretia off steroids multiple times, at Lecretia’s request, but all that happened was that she suffered blinding headaches.

  Reading the affidavit, I got the sense of someone who was well-meaning and kind-hearted, but who fundamentally saw her views and her perspective as superior to those of the patient. Her philosophy was diametrically opposed to Lecretia’s. If all that palliative care could offer was a wholesale rejection of Lecretia’s personal values of freedom, choice and the primacy of the patient’s beliefs over the doctor’s, then it was failing us, and failing others.

  Etienne Montero, professor of law at the University of Namur in Belgium, discussed the impact of legislation in Belgium, explaining the controls and safeguards, and its potential expansion to include minors and the mentally unwell. Like Dr Hickey, he cited the case of the Verbessem twins as troublesome. One got the impression he was morally opposed to the choices people were making under Belgian law. It’s worth noting that Montero’s evidence was dismissed in Carter v Canada, the judge saying:

  We are not convinced that Professor Montero’s evidence undermines the trial judge’s findings of fact. First, the trial judge (rightly, in our view) noted that the permissive regime in Belgium is the product of a very different medico-legal culture. Practices of assisted death were ‘already prevalent and embedded in the medical culture’ prior to legalization. The regime simply regulates a common pre-existing practice. In the absence of a comparable history in Canada, the trial judge concluded that it was problematic to draw inferences about the level of physician compliance with legislated safeguards based on the Belgian evidence. This distinction is relevant both in assessing the degree of physician compliance and in considering evidence with regards to the potential for a slippery slope.

  Second, the cases described by Professor Montero were the result of an oversight body exercising discretion in the interpretation of the safeguards and restrictions in the Belgian legislative regime—a discretion the Belgian parliament has not moved to restrict. These cases offer little insight into how a Canadian regime might operate.

  Tony O’Brien, an Irish palliative care physician, also outlined the value of palliative care. He made a helpful distinction between the types of requests to die: those that were really a cry for help, and those that were genuine. Unlike Baroness Finlay, he acknowledged the latter group:

  This group (an important minority) express a clear and consistent wish to exercise the right to have their life ended at a time, in a place and in a manner of their choosing. Typically, these patients are not depressed and they do not ordinarily exhibit features of other mental illness. In contrast, they are commonly quite intelligent, controlling and analytic people who feel the need to continue to exercise the greatest possible level of control over their destiny.

  He also acknowledged that palliative care had its limitations. O’Brien’s view, however, was in line with the judge’s in the case that Marie Fleming, who suffered from multiple sclerosis, brought to the Irish High Court in 2012.

  ‘If this court could tailor-make a solution,’ the judge said, ‘which would suit the needs of Ms Fleming alone without any possible implications for third parties or society at large, there might be a good deal to be said for her case. But the court cannot be so satisfied.’

  The Fleming case was problematic for us, as the circumstances were similar to Lecretia’s, but the judge had found against her. O’Brien was right to bring it up. We would have to deal with it. That said, in Fleming’s case the judge noted that there was nothing stopping the state crafting a law to allow assisted dying, as although Ireland may be constitutionally required by the right to life to discourage suicide generally, it may not be required to in cases like Ms Fleming’s.

  Simon Allan, director of palliative care at Arohanui Hospice in Palmerston North, discussed palliative care in some detail, acknowledging that, for a small number of patients, the only effective way to deal with their pain was terminal sedation, the very death Lecretia didn’t want. Mr Allan did not, however, fear assisted-dying legislation. Instead, he acknowledged that, though a regime might cause a divide in the medical profession, for palliative carers, it would be ‘business as usual’, as palliative carers would neither be asked to prescribe life-ending medication, nor help with it being administered. That responsibility would fall to individual GPs.

  Dr Harvey Chochinov, professor of psychiatry and director of the Manitoba Palliative Care Research Unit, described his research into the concept of patient dignity, acknowledging that it meant different things to different patients, and required different approaches from carers. He acknowledged that there will always be those who want the option of assisted dying, and that palliative care ‘will never be the perfect foil to suffering’. He took issue with some of Justice Lynn Smith’s statements in her judgment in Carter v Canada, and described scenarios in which starving or dehydration until death were ‘normal’, and how their negative effects could be palliated.

  It was a strong submission.

  After I finished reading it to her, Lecretia paused for thought. What she wanted was an outcome that reflected her autonomy and free will. Chochinov’s arguments, and the idea of having a normal death, if that meant days of starving and dehydration, were of no comfort to her.

  Dr Amanda Landers, palliative care physician and chair of the Australian and New Zealand Society of Palliative Medicine, outlined the policy an
d position of the ANZSPM. While acknowledging that assisted dying happens, she denied that ‘bumping up’ of pain medication was a form of euthanasia, as the intent is to relieve suffering, and not to hasten death. This is often called the ‘double effect’. When medicine relieves pain but hastens the death of a dying patient, a doctor can take refuge in the idea that their only intent is to relieve pain. Lecretia and I held the view that this was in effect a conscious self-deception and that some doctors knew exactly what they were doing. True intent in these cases is almost impossible to determine, and suggesting that all doctors have the same intentions is not something that can be proven or demonstrated.

  Dr Sinéad Donnelly from Wellington acknowledged that palliative care is imperfect, but believed that Lecretia would not be at risk of an undignified death. She rejected assisted dying and the sense of control and autonomy it might give patients, saying that palliative care had answers for that. But she did acknowledge death is different for everyone, an entirely individual experience. But what she would not accept is that all of those differences are worthy of the same respect.

  Roderick Macleod, an Auckland palliative care physician, acknowledged that some pain can be difficult to manage, citing a World Health Organization paper, which suggested up to 10 per cent of patients experience pain that is difficult to control. Despite this, he outlined his opposition to assisted dying and its possible effects on the medical profession. Finally, Dr John Kleinsman provided his view of the ethics of assisted dying, as director of the Nathaniel Centre, a Catholic bioethics think tank. He called upon the Hippocratic oath. He argued that the issue of elder abuse (a real problem, worthy of serious attention) was a justification for barring assisted suicide. These sorts of assertions, like the potential abuse of the disabled, are disingenuous, and suggest that it is excusable to ignore the plight of the terminally ill, and that their suffering is justified, to keep others from being afraid.