Lecretia's Choice

by Matt Vickers

  Colin Gavaghan, associate professor of law at Otago University in New Zealand, gave his views on the bioethics of assisted dying, and the positions held by New Zealand medical bodies. He asserted that there was no ethical distinction between helping a patient to die and withdrawing life-preserving treatment. In both cases, the physician knows that death will be the outcome. He also pointed out that a doctor may prescribe a life-ending drug to a patient without knowing whether they will actually take it, whereas a doctor withdrawing life-sustaining ventilation or hydration knows exactly what the outcome will be.

  He quoted from Principles of Biomedical Ethics by Tom L. Beauchamp and James F. Childress:

  Correctly labelling an act as ‘killing’ or as ‘letting die’, therefore, does not determine that one form of action is better or worse, or more or less justified, than the other. Some particular instance of killing (a brutal murder, say) may be worse than some particular instance of allowing someone to die (e.g., forgoing treatment for a patient who is in a persistent vegetative state); but some particular instance of letting die (not resuscitating a patient who could be saved, say) also may be worse than some particular instance of killing (such as mercy killing at the patient’s request) ... We may need to know about the actor’s motive (whether it is benevolent or malicious, for example), the patient’s or surrogate’s request, or the act’s consequences. These additional factors will allow us to place the act on a moral map and make a normative judgment about it.

  This was the essence of the debate for me. The rules were inflexible, unable to accommodate complex situations in which a sophisticated moral judgment was called for. The laws were tipped too far towards outright prohibition, leading medicine to do the wrong thing, while doctors wanting to abide by their patients’ wishes could only do so by flouting the law.

  As for autonomy, Associate Professor Gavaghan said:

  I am unaware of any credible account of autonomy that asserts it ‘essentially knows no limits’. Even John Stuart Mill, widely hailed as the foremost champion of personal liberty, recognised that this could legitimately be restrained to prevent harm to others. But a serious commitment to respect for autonomy requires more than merely speculative or remote threats of such harm. Rather, the onus rests with those who would restrict autonomy to demonstrate a compelling need to do so.

  Dr Libby Smales, Dr Rajesh Munglani and Dr Michael Ashby introduced affidavits clarifying earlier statements in response to some of the criticisms Baroness Finlay had offered. Dr Ashby noted that the claims made in several of the defendants’ affidavits were irrelevant to the case, as they did not apply to Lecretia. She was not incompetent, vulnerable, unaware of her options, or depressed, and she had not been coerced, so it was simply incorrect to assert that her request was irrational on the basis of any of those factors.

  Regarding the assertion that it was impossible to design a system in which every medical procedure will be completed perfectly, free of error, Dr Ashby gave the example of open-heart surgery, a commonly used medical procedure. It is not banned even though errors occasionally occur in the operating theatre. There are always risks, but as long as patients are aware of those risks, they can elect to undergo a procedure or not.

  He agreed that palliative care had made significant advances, but said the idea that Lecretia should wait until it had attained some hypothetical state of perfection, a target that might never be reached, was ridiculous. I agreed. To my mind, it was as ridiculous as asking Lecretia to wait for a cure for brain cancer. In her terminal state, she did not have the time to wait for either of these solutions.

  Tony O’Brien had given the examples of Stephen Hawking and Jean-Dominique Bauby as evidence that dependence and impaired mobility are not incompatible with quality of life. Dr Ashby simply observed that Professor Hawking had publicly supported the UK’s assisted-dying bill, and discussed some of the thresholds at which he would like to have the choice to be assisted to die.

  Dr Munglani was questioned by Baroness Finlay about his claim that he’d very frequently seen cases of excruciating pain unresponsive to analgesics, requiring heavy sedation. She had questioned him about this once before, in 2014, when there was an assisted-dying debate before the House of Lords in Britain. At the time, she emailed him and said this did not accord with her experience and asked for evidence. He provided a wealth of supporting evidence to the baroness in an eighteen-page email, which included the views of his colleagues, who generally supported his position, and numerous citations from studies supporting his claims. Dr Munglani included this email as an exhibit in Lecretia’s case, and noted that the baroness had not responded to any of that evidence in her affidavit.

  Dr Eric Kress, a medical director at the Hospice of Missoula, Montana, explored how Montana had changed since a court ruling in 2009 which found that doctors in that state would not be subject to prosecution if they helped patients to die. In short, he said that it hadn’t changed much at all. Patients weren’t worried about pressure from doctors, and there was no drop in hospice enrolments. For those who were concerned about controlling their circumstances, however, the possibility of an assisted death gave them much relief.

  He confirmed that there was no compulsion for doctors to participate. Upon being asked for assistance, Dr Kress would review the patient’s files, consult specialists, attempt to understand the patient’s motivations, and ensure that no underlying factor, such as poorly controlled pain, had contributed to the request. He was surprised at Baroness Finlay’s assertion that doctors would ‘view the death of a patient as a solution to the problem they present’. He did not feel that way at all: his primary motivation was to ameliorate suffering. He regarded aid in dying as a last resort. In the six years since the law had been clarified, he said he had written ten prescriptions for patients who had asked him to help them die. ‘All of those patients were of sound mind, none was depressed and not one of them was suicidal,’ he said. ‘They all loved life and told me they would prefer to live, but not in the miserable conditions the disease had imposed on them.’

  He went on to discuss other methods patients can use to exercise some control over the manner of their deaths, including palliative sedation and refusing life-prolonging interventions. He noted that these options are not considered to be suicide, even when the patient clearly chooses them in order to hasten death. He said he agreed with that position, and also considered that aid in dying is not suicide.

  He explained:

  I frequently know the families of my patients and I have seen that family members of a patient who chooses aid in dying are glad that their loved one was able to achieve a peaceful death, at home, surrounded by loved ones. This was certainly true for the three patients that asked me to be present when they took the medication. The family members of patients that have chosen aid in dying have universally been grateful to me for allowing the patient to have a peaceful death. I am familiar with a study that shows that none of the adverse impacts known to afflict survivors of someone who has committed suicide are experienced by survivors of patients who choose aid in dying. My experience is consistent with the findings in that study.

  Philip Patston, a New Zealand disability campaigner, replied to the affidavits presented by Dr Hickey, Wendi Wicks and Robyn Hunt on behalf of the Care Alliance. Patston, who uses a wheelchair and lives with cerebral palsy, said in his affidavit:

  I find their arguments patronising. They amount to saying that members of the disabled community have such a low sense of self-worth that the availability of assisted dying would make them feel obliged to end their lives in order to avoid being a burden on others. In my opinion there is no justification for projecting that view onto an entire category of society. I doubt the witnesses for the Care Alliance have such a low sense of self-worth. I certainly do not.

  He felt that disabled people were more at risk from suicide-related harm under the current laws than they would be if assisted dying were legal, and that conflating the issues of disability discrimin
ation and assisted dying was not useful for disabled people, or for people suffering a terminal illness. He said that as a disabled person, he valued his right to live, and he wanted the right to choose to end his life in the case of acute suffering. In his conversations with other members of the disabled community, he found broad support for these views. It was clear from Mr Patston’s affidavit that the Care Alliance and Not Dead Yet Aotearoa did not speak for the entire disabled community, and possibly only for a very small part of it.

  Dr Grube and Dr Reagan, of Oregon, addressed concerns about the potential impact of assisted dying voiced by some of the witnesses for the defence. They worried that assisted dying might harm the doctor–patient relationship, or the quality and availability of palliative care. Dr Grube pointed out that none of that had happened in Oregon. A majority of doctors in Oregon now supported assisted dying, even though some don’t participate. No doctor is compelled to do so, and others work at institutions that don’t allow it.

  He added: ‘I reject any suggestion that legalisation of assisted dying leads doctors to lose sight of treating the distress of their patients, and to focus instead on providing aid in dying. Compassionate doctors, in my opinion, pay attention to their patients’ needs, symptoms, disease, and so on. They honour their patients’ autonomy, ensure the patient is giving informed consent, spend hours explaining the patients’ issues, and ultimately do not restrict legal options from their patients. They care.

  ‘In the USA, if you listen to the tone of many of those (including doctors) who are opposed to aid in dying, you find a surprising amount of anger and irritability, scolding, and guilt and shame-flavoured statements. In my view it is they who have lost sight of treating the distress of their patient, and who prevent their patient from a dignified death.’

  He also observed that palliative care in Oregon had expanded after the Death with Dignity Act was passed. Ninety-three per cent of patients who consider assisted dying are in hospice care. He said that the patients he treated and who obtained prescriptions under the Death with Dignity Act were not suicidal or mentally ill, and were not acting impulsively or alone, but within a community, with their family, their hospice, and their physician.

  Dr Reagan expressed the view that the doctor–patient relationship had changed, but in a positive way. A request for aid in dying dramatically deepened the relationship between the doctor and their patient, and the patient’s family, too. He said that he found these cases tough and emotionally draining, even after more than fifteen years working in this area, but he thought that was as it should be: it should not be an easy option, it should be a last resort.

  He noted that obtaining a prescription is a big commitment, and it takes a lot of effort on the patient’s part, because doctors want to avoid it if they can, but those patients who go through with it feel much more at ease afterwards, and experience far less distress.

  I read all these and other affidavits to Lecretia as she reclined in her electric armchair, eating feijoas. It took days to get through all the material, and I frequently had to drink water to keep my throat from getting parched. I’d never talked so much in my life. When it was done, she was pleased: she felt the Crown’s case was weak and was looking forward to getting into the courtroom.

  Lecretia’s lawyers also prepared a submission, a long document that outlined their interpretation of the Bill of Rights Act and the Crimes Act, drawing heavily on the evidence that had been submitted by both their witnesses and the Crown. It outlined how dignity is a key aspect of the right to life, and that this principle had been upheld in previous court decisions. The submission laid out a case for not prosecuting Lecretia’s doctor—the best result we could hope for—or at least declaring an infringement of Lecretia’s rights.

  Though Lecretia was interested in the case, she had a more pressing concern. She’d organised for the commissioners from the Law Commission to visit her at home, to discuss the status of her last project with the commission: a review of the laws of contempt of court. On the Tuesday before the case, the four commissioners and the general manager crowded into our small lounge, bringing with them almond croissants from Louis Sergeant’s that Lecretia had demanded as the price of admission.

  The commissioners brought Lecretia up to speed, but it was becoming clear that, in Lecretia’s short absence from the office, her work had moved beyond her. She had trouble following the thread of the conversation and appeared to lose interest. But the visit was symbolic: an acknowledgment of her contribution to the Law Commission. Simply by visiting Lecretia the commissioners paid her tribute. She sat in her armchair in the corner of the room, legs raised, one eye swollen shut and her head nodding, while the commissioners spoke about how the work would continue, incorporating her contributions.

  Before the commissioners left, I asked them for a photograph with Lecretia, and they obliged. Five venerable gentlemen at the pinnacle of their legal careers, and Lecretia in the foreground in her wheelchair, a rug over her legs, looking slightly diminished. And yet she was the focus of the image, the subject that drew the eye.

  Later that afternoon I spoke to Lecretia and asked her what she wanted to do. Officially she was still on unpaid leave from the commission. She had held on to the job because her intent was to get better and return to her nineteenth-floor office with its beautiful views of the harbour. But something had changed, and when I suggested that she might think about resigning, she gave her consent.

  I called the general manager, a quiet and kind man named Roland Daysh. I thanked him for organising the commissioners’ visit, and informed him that Lecretia would like to resign. He accepted the resignation with some relief. The commission had been kind in keeping Lecretia’s role open, knowing that her work was such an important part of her identity, but had already sensed that she would not return. Tuesday 19 May 2015, six days before the Seales v Attorney-General hearing, was the last day of Lecretia’s seven-year career with the Law Commission.

  Despite her declining health, Lecretia’s blood counts had improved, so her oncologist was willing to let her try temozolomide again. It was her last hope, but recalling the dramatically positive effect it had after our trip to Argentina, we felt it was worth a go.

  I was still feeling guilty about cancelling our trip to Auckland, so I organised for a local chef, a young man named Sam Pope, to come and cook for Lecretia. We worked on the menu together: him presenting ideas and me choosing dishes that I thought would appeal to my wife. We chose five courses: Jerusalem artichoke and porcini soup, seared salmon with remoulade, confit duck leg with lentils and a plum relish, slow-cooked lamb with fondant potatoes and beans, and rich chocolate dessert to finish. I wanted to surprise her. I invited her closest friend, Angela, and Angela’s husband, Ben, and Shirley, too.

  Sam arrived and greeted me at the door. He’d spent the day preparing his ingredients, and brought a restaurant’s worth of supplies and equipment into our kitchen, requiring only the use of our stove to cook and assemble our meal. At the right moment I wheeled Lecretia up to the dining room table, which I’d laid out with printed menus and place settings. She was delighted.

  Sam had cut up Lecretia’s dishes so that she could negotiate them with the fork in her right hand. I would turn her plate in the middle of each course, so that the left-hand side, which her brain ignored, became the right. She lingered over the food, savouring every mouthful. It was a far sight better than the dishes I had served up over the last couple of weeks. When the dessert arrived, she took the tiniest morsels with every spoonful, as though wanting it to last forever.

  When the evening was at an end, I wheeled Lecretia into the bedroom and helped her out of the wheelchair. I sat her on the bed, and helped her undress and get into our bed. She fell asleep almost immediately, a half-smile on her face.

  The next day we received the Crown’s submissions for the first time, laying out their case. It was narrowly focused on the interpretation of the law. But that made sense, in a way. If the Crown started deb
ating the ethics of assisted dying, the case moved from an argument about whether it was legally possible to whether it was morally permissible, so instead the emphasis was on the intent of the relevant provisions of the Crimes Act. But Lecretia was ready. It was time to fight for her life, and control of her death.

  Chapter 21

  ON MONDAY 25 MAY, the first day of the hearing, I woke up next to Lecretia while she still dozed beside me. I got up and went to talk to her mother. We’d decided on a division of responsibilities: Larry and I would head to the court, while she and Jeremy would bring Lecretia to the court later.

  Despite Lecretia’s determination to be at the courtroom, her body was not cooperating. She now slept twelve hours every day. Even a week earlier she would have been upset to have been a minute late, but she was now indifferent about keeping time.

  As we entered the court, I experienced my first media scrum. There were two tiers of photographers, some squatting, some standing, and the black lenses of their cameras were clustered together like the eyes of a spider. As Larry and I approached, their shutters clicked rapidly and hurried voices asked for comment.

  We’d decided not to say anything. We didn’t want to appear to be trying to influence the outcome of the case one way or another. All requests were answered in the same way. ‘We’re not speaking to the media out of respect for the judicial process.’

  In the courtroom the judge’s seat was behind a large bench on an elevated platform. In front of him sat the clerk, and then at floor level were the various counsel. Lecretia’s team were at the very front of the courtroom; behind them sat the Crown, and the Human Rights Commission, and behind them the Care Alliance and the Voluntary Euthanasia Society. On the left side, facing the judge, were desks for media and the various reporters from the newspapers, radio and television. On the right side was the jury box, where Lecretia’s friends and family were invited to sit. There was a desk for me, off to the side of that, where I could take notes. And beside me were a couple of video cameras, pointed away from me and the jury box, so that Lecretia and her family wouldn’t be filmed. Lecretia’s illness was becoming more pronounced, distorting her features. We wanted people to remember her as the person she was, not diminished by her illness.