by Matt Vickers
When I’d finished reading the affidavits to her, I looked at Lecretia with some relief. We had expected to see some worrying evidence that we hadn’t yet encountered, or some argument we hadn’t considered. But it was largely the same evidence that had been presented in Carter v Canada, a case that had been won. It gave us hope.
‘What was the name of that doctor?’ she said. ‘The one from Manitoba?’
‘Chochinov?’
‘Yes. The sound of his name reminded me to ask you something.’
‘What’s that?’
‘Is there any chocolate in the house?’
Chapter 20
LECRETIA’S SUNDAY STORY was due to be aired on 17 May. On the day of the broadcast, Lecretia’s family came to Wellington, and we went out to Logan Brown, a local restaurant, for lunch. Lecretia was now too tired in the evenings to go out to dinner. When we left the house, she now needed to be moved around in a wheelchair. My father had been down to visit and had built wooden ramps to be laid over the steps into our home, so that she could be taken from the living room up to the road without leaving her chair.
We discussed what we were expecting from the Sunday episode. For me, the worst possible outcome would have been a tear-jerker story which didn’t push the issue forward. In my short experience of public life, I had learned that no matter what you want the story to be, others will decide it for you. All you can do is to be your authentic self, and hope that the truth of the story will come through unscathed. Lecretia hoped the same, but was also anxious about how she might appear on camera. She didn’t like the idea of being on television, but she believed that any embarrassment she felt would be worth it if it made an impact.
I had also been asked if I would be willing to go on breakfast television the day after Sunday aired, as they planned to play Lecretia’s challenge to the prime minister to change the law, and they wanted to give me the opportunity to respond to his on-camera comments. Lecretia was not well enough to appear herself, and the responsibility had fallen to me. It wasn’t something I’d anticipated and I was reluctant to do it, nervous about how it might interfere with my professional life. Would Xero be upset about me speaking out on such a contentious issue? What would happen in meetings with clients and partners if people knew I was an assisted-dying advocate?
On the Sunday night, we settled down to watch the program. Sunday’s ratings were typically between 400,000 and 600,000 viewers, so between 9 and 13 per cent of New Zealand’s population would be tuned in. Lecretia sat in her electric armchair with the footrest raised, a blanket over her and Ferdinand perched between her legs on the footrest. She was in good spirits, but apprehensive about the screening.
The story itself was impressive. It addressed Lecretia’s legal challenge, but it was a human story too: it was hard not to be moved by Lecretia’s quiet determination. Her tone was measured, positive and clear: she came across as utterly reasonable, which of course she was. When it was over, my phone and Lecretia’s immediately began beeping. People started visiting Lecretia’s Facebook page, wanting to know more about her, and she started getting a huge number of social media followers. In the space of less than an hour, Lecretia Seales was a household name.
I suddenly felt very protective of her. Would she be strong enough to deal with all this attention? The High Court hearing, at which all the written evidence would be heard and discussed, was due to begin on Monday 25 May, just over a week away. But she was very determined to appear in court. It wasn’t long before she was asking me to re-read many of the affidavits that we’d already reviewed, so that she could reflect on the arguments before they were heard in court.
On Monday, I drove down to the TVNZ studio in Wellington. I’d never been on TV before, and I was being asked to respond to the prime minister, who was in the studio in Auckland, live on air. I was mic’ed up and faced the barrel of the camera.
The program started with a clip from the Sunday program in which Lecretia directly addressed the prime minister and challenged him to change the law. John Key responded by declaring his position—that it was a matter of conscience, implying that it should be dealt with as a private member’s bill. Personally he supported assisted dying, he said, adding that he would probably vote for assisted-dying legislation if it came before the house and was reasonably circumscribed; he also said he had a lot of sympathy and respect for Lecretia. This was a victory. A week earlier, questions about assisted dying would have been deftly avoided by most politicians, but now our country’s leader was discussing his views openly on television. After months of silence, assisted dying was a public issue again.
I got the chance to respond, and acknowledged and built on John Key’s statements, agreeing that it was a conscience issue, but suggesting possible ways that the government could take it forward other than a private member’s bill—by putting a government bill on the order paper and putting it up for a conscience vote, or conducting a parliamentary inquiry, or referring the matter to the Law Commission. Though the prime minister did not get a chance to respond to my suggestions, this was a good result. At this point it was enough to have him talking about the issue—parliament was not in a position to do anything until the High Court case was resolved. Raising awareness was the best we could hope for, so that once the hearing concluded there would be enough public interest for parliament to take action, whatever the outcome. At the end of the interview the cameraman removed my mic. My hands were clammy, and shaking. I left the building and drove home.
Shirley and Larry were still staying with us. They had seen the interview and were impressed. Rod Drury, my boss’s boss at Xero, had texted to congratulate me. I felt pretty good. Lecretia was oblivious, fast asleep in bed. She wasn’t getting up much earlier than 10 am by then, so the 7 am broadcast was way too early for her. When she did get up a bit later, she was interested, but more interested in being wheeled out to the dining room table, where she could eat her favourite breakfast: homemade muesli, plain yoghurt and blueberries. While she ate I dispensed her various medications, which we had now augmented with metformin and atorvastatin, drugs that were not typically prescribed but for which there was mounting evidence of efficacy against cancer, along with the herbal stuff: turmeric and Salvestrol. The pills were a meal in themselves, there were so many of them. But Lecretia swallowed each without complaint, washing away their bitter taste with mouthfuls of muesli.
In the following days, Lecretia and her lawyers worked on our reply affidavits, which gave us a chance to provide additional information and respond to the Crown’s evidence. These were collated as written testimonies, like the previous affidavits, and once submitted they would complete all the written materials necessary for the hearing.
Lecretia’s affidavits were the first to be sworn. She was interviewed by Catherine Marks while she reclined in her chair, and asked for her response to the evidence that had been written by the Crown’s witnesses. Her first affidavit was a reply to Baroness Finlay’s, asserting that the baroness’s concerns about coercion, vulnerability and depression did not apply in Lecretia’s case. Lecretia concluded by saying:
Baroness Finlay discusses the need to listen carefully and sensitively to terminal patients’ needs in order to improve their sense of wellbeing. That is exactly what I am asking for in my case. I would like my wish not to have to suffer unnecessarily at the end of my life to be respected, rather than to be told that my own choices are unsafe or cannot be trusted.
In her second affidavit, she responded to the other crown witnesses. She complimented the work of palliative carers and expressed gratitude for the care she’d received so far, but then outlined her concerns: the need for strangers to visit her house, or shower her, which she didn’t like. She discussed her symptoms and how palliative care drugs did not help her with them, and how the changes she was undergoing caused her psychological distress. The unwinding skein of her life was blowing free in the wind, and it tormented her. She wanted to control her destiny. The freedom to take life-e
nding medication if she wished would give her that.
She objected to the evidence of Dr Chochinov, denying that she felt hopeless or lacked self-worth. She vehemently objected to the views of Robert George, who had said that expert palliative care allowed a dying person to ‘explore other perspectives and realities’, thereby transcending their current suffering:
This does not resonate with me or the person I am in any respect. Indeed, it is almost insulting to me to suggest my very considered views and assessment of my situation are somehow unreliable and could be recast so that my suffering is imbued with meaning.
She rejected the idea of terminal sedation as an acceptable way to die that was consistent with who she was. She identified herself as part of a small group of people who have expressed a clear and consistent wish to die and are not masking some sort of untreated physical or psychological suffering. She argued that suffering is inherently unique to individuals and some suffering simply cannot be addressed through palliation. For Lecretia, freedom to choose when and how she died was the only thing that would address that suffering. Being forced to undergo unnecessary suffering would be intolerable to her.
She couldn’t have been clearer.
The next affidavit was from Dr Linda Ganzini, who had conducted research into whether assisted-dying legislation in Oregon had affected vulnerable groups, such as the elderly, women, people without health insurance, people with AIDS, people with low educational status, the poor, racial and ethnic minorities, people with disabilities, minors and those with psychiatric illnesses. Her study found that none of these people were over-represented in any Oregon statistics, except those with AIDS, and that may have been due to the unavailability of effective AIDS drugs at the time of the study. Opponents have challenged Ganzini’s study many times, but their objections always come up short as the data is thoroughly clear. The findings were upheld in Carter v Canada, the case that brought assisted-dying laws to Canada. The Oregon laws were working. No one has been able to produce a peer-reviewed study which contradicts Ganzini’s findings.
Dr Ganzini also took issue with some of the figures Baroness Finlay had quoted. The baroness had asserted that in Oregon assisted dying was primarily used by people older than sixty-five. Dr Ganzini was able to show that it was more common in younger terminally ill patients, where the patient’s youth might cause them to take a long time to die. She also showed that Baroness Finlay’s statistics overstated the number of patients receiving treatment for clinical depression who had received help to die—it was 16.7 per cent, closer to one in six than one in three.
She also demonstrated that statistics can be presented to sound more alarming than they actually are. For example, Baroness Finlay had said the number of patients who received help to die in Oregon each year had increased by six and a half times since the act was passed, which sounds frightening. But in raw terms, the numbers did not seem so dramatic: in the first year, twenty-four people had received prescriptions, increasing to 155 in 2014, with only 105 ultimately taking the medication. This represented only 0.31 per cent of all deaths in Oregon in 2014.
Baroness Finlay pointed out that 40 per cent of patients cited being a burden as the reason for seeking assisted dying, a proportion which might seem to indicate coercion, but Dr Ganzini noted that under Oregon law a patient can nominate multiple reasons. The other significant reasons chosen by patients were losing autonomy (91 per cent), inability to engage in activities, making life less enjoyable (87 per cent), loss of dignity (71 per cent) and losing control of bodily functions (50 per cent). Being a burden was way down the list, and was in itself no evidence of coercion.
The affidavit of Professor Udo Schuklenk, a bioethicist, outlined the findings of a Royal Society of Canada inquiry into end-of-life decision-making, conducted by a panel of five bioethicists and health professionals which he had chaired. Dr Schuklenk had made it clear from the outset that he would not support decriminalisation unless he could be completely satisfied that ‘slippery slope’ arguments were not warranted. The panel reviewed evidence from Belgium, Luxembourg and the Netherlands, along with the four US states that had decriminalised assisted dying.
The panel concluded that evidence from other jurisdictions did not support the causal slippery slope argument, and noted: ‘The factors that proponents of this argument identify point towards safeguards that could be implemented, rather than towards total prohibition.’ It also found that prohibition would not prevent lives lost through assisted death, because assisted dying happens anyway. Its argument was that the practice would continue even if it remained prohibited, and that there were moral costs associated with prohibition, including ‘needless suffering and thwarting of autonomy’.
Although the panel strongly endorsed efforts to improve the quality of palliative care, it concluded that not all patients want palliative care, and nor can palliative care help all patients. In addition, it asserted that society should not have to wait until palliative care reaches perfection before it recognises a terminally ill person’s right to be assisted to die at a time of their choosing.
In short, the panel’s findings were the same as Justice Lynn Smith’s. In summary, Dr Schuklenk said:
We tested the evidence as academics. Justice Lynn Smith saw it tested under courtroom conditions (and her views were upheld by the Supreme Court of Canada). Quebec has tested the evidence under legislative conditions. I take comfort from the fact that we have all come to the same conclusions.
Dr Schuklenk also reviewed the affidavits of the witnesses for the Crown. He said that their claims of coercion and vulnerability were unsubstantiated by evidence, and that the absolute ethical principles asserted by some of them were not universally held. Many secular ethicists believe that the only question that matters from the patient’s perspective is whether death is in the patient’s best interest. The method by which that is achieved, given the patient’s voluntary, competent request, is moot, whether via withdrawal of treatment, taking of life-ending medication, or being administered a drug by the doctor.
Baroness Finlay had implied that suicides in Oregon had increased since the passage of its Death with Dignity Act and were above the national average. Dr Schuklenk was able to show that the suicide rate in Oregon has always been above the national average, and that the introduction of legislation did not see an increase in the trend at all. There was a decrease in the 1990s which reversed around 2000, but this pattern was seen throughout the United States. In the Netherlands, contrary to Baroness Finlay’s claims, the suicide rate was no higher than the United Kingdom’s. In 2012, the suicide rate in the UK was 11.6 suicides in every 100,000 deaths, compared with 10.6 in the Netherlands, and in fact the suicide rate in the Netherlands had gone down 4 per cent between 1995 and 2010. There was no evidence of any sort of suicide contagion—the idea that otherwise well patients would commit suicide at increased rates simply because the laws allowed terminally ill patients to be assisted to die.
Addressing the increase in the number of assisted deaths in Oregon, from 0.09 per cent of deaths to 0.31 per cent of deaths, he said: ‘It is not surprising that a new service provided by a health care system would experience an increasing number of users over time. The increase in numbers does not constitute evidence of an abusive system.’ He acknowledged that a small number of Oregon patients reported depression (three out of eighteen patients in the study cited, or 16.7 per cent), but noted that depressive patients are not necessarily unable to make competent choices. Then, in response to the argument that safeguards would never be safe enough, he stated that although no system is ever 100 per cent effective, the risk of abuse can be thoroughly minimised and needs to be assessed against the benefits to patients. He also said, ‘When the outcome is the same—death—why in one case are safeguards that are less than 100 per cent effective not acceptable (assisted dying) but in the second case acceptable (withdrawing medical treatments)?’
Regarding Dr Kleinsman’s references to the Hippocratic oath, he said, �
��This oath has limited value in the modern world. I note for example that it also prohibits doctors from practising surgery ... As of 2002, only one of the twelve medical schools in Australia and New Zealand was using a modified version of the Hippocratic oath in its graduation ceremonies.’
Richard Owens, professor of psychology at Auckland University, responded to the affidavits of Amanda Landers and Sinéad Donnelly and introduced in his new affidavit a survey he had conducted revealing that doctors in New Zealand essentially admitted that they were hastening death without request, and at the same rates as doctors in the Netherlands were hastening death without request before assisted-dying legislation was introduced, and that the availability of palliative care had no effect on physicians’ decisions to do so. It also revealed that, alarmingly, in over half the New Zealand cases there was no discussion with the patient beforehand, despite almost a quarter of those patients being judged as competent. These cases, in which doctors ended their patients’ lives without an explicit request from the patient, accounted for 2.7 per cent of all deaths in New Zealand. Deaths of this type are much less frequent in the Netherlands and Belgium since assisted-dying legislation was enacted.
Professor Owens also argued that it was naive to quote the maxim ‘first do no harm’ as a defence against assisted dying, and gave the example of cutting off someone’s legs: it does harm, but may be the best option in some circumstances.
In response to Roderick Macleod’s statement that pain can be relieved in 90 per cent of patients, he argued that this fact was no comfort to the ‘small but significant’ group of people whom, by implication, doctors are unable to treat adequately. Owens finished by noting: ‘The slow improvement of palliative care possible over the longer term is of no benefit to those who cannot be helped right now.’