by Matt Vickers
‘Yes,’ Lecretia replied. ‘And I do not want you to have a mad wife to look after.’
‘Really?’ asked Janet.
‘Yes,’ she said, smiling. ‘If I am mad, then I have already died, in my own mind.’
‘Look,’ I said, ‘the decision is ultimately going to be: is my wife suffering? Is my wife suffering, and can I see that she’s suffering? Is there any hope that she won’t suffer, is there any hope that she’ll come back to me?’ I spoke slowly, searching for the words. ‘When that’s clear, then I would be compelled to follow her wishes, and to instruct the doctor to proceed with what she’d decided.’
Lecretia listened quietly when I spoke, silently agreeing with what I said. If she’d objected, she would have said so. When I’d misdescribed her wedding dress in an earlier part of the interview, she was quick to correct me. There’s no doubt she would have corrected me on this.
Later that afternoon, there was some filming in town at Lecretia’s favourite café, a Parisian-style salon de thé called Louis Sergeant, where they served herbal teas and the most spectacular cakes I’d ever seen. When Lecretia was still working, she used to schedule lunch dates there with friends, and held court while catching up on news. But on this day she was being filmed with her mother, beneath a large portrait of Marie Antoinette. A couple of desserts were served.
‘What’s this, Lecretia?’ asked Shirley.
‘That’s the L’Intense. It’s chocolate and it’s got peanut and salted caramel in the base. It’s my favourite.’
Without any warning she cried out and tipped sideways out of her chair onto the floor of the café, almost taking the table and the desserts with her. Thankfully she didn’t hit her head. She had just lost her balance. But it was another reminder of how fragile she was. There was such a disconnect between the strength of her spirit and the failure of her body.
As Lecretia was helped back up, all she said was, ‘How embarrassing.’
And then she got on with enjoying her dessert.
On Friday we went to see the oncologist. We were still hopeful. There had to be something. Lecretia still had her fighting spirit, and so much to live for.
But the oncologist did not see any point in Lecretia continuing with chemotherapy. Her movements were weakening rapidly. He said it was time to consider palliative care. She should be speaking with a hospice.
We knew what that meant. Lecretia was dying.
I couldn’t accept it.
‘We have to try something. Are there clinical trials, new overseas treatments? Immunotherapy?’
He gave us a few leads, but everything now was a long shot. I asked him to give her a new prescription for temozolomide. It was the only drug that had had any noticeable effect. The secondary chemotherapy had at best slowed things down, and at worst had no effect at all. Temozolomide had at least got Lecretia walking without a stick again, and feeling good.
Unfortunately Lecretia’s platelet count was down again, so he wouldn’t prescribe it. But he gave us hope by saying that, if things improved, he could prescribe it again later. In the meantime, he gave us some phone numbers for palliative care teams. He said it wasn’t too early to talk to them, as they could make Lecretia more comfortable around the house.
Lecretia seemed unmoved by the news, as if she was expecting it. Shirley and I were devastated. We drove home.
The team from Sunday wanted to do another interview that afternoon before they returned to Auckland, but I wasn’t sure.
‘They want to come over,’ I said. ‘Do we want them to?’
‘They can come over,’ said Lecretia. ‘They may as well.’
‘Are you sure?’
‘Yes.’
The team showed up shortly after lunch. They decided to do another interview, this time with Lecretia and her mother. It was a lovely interview, and it came out, finally, that Lecretia had been justice adviser to John Key, at the Department of the Prime Minister and Cabinet. This piqued Janet’s interest.
‘What did you think of the job?’
Lecretia’s eyes sparkled. ‘I found it really exciting. I loved knowing what was going on behind closed doors.’
‘And what was your relationship to Prime Minister John Key?’
‘I was his adviser, so I would give him regular briefing notes advising him on choices to be made in the justice sector.’
‘What did the prime minister make of your advice?’
‘It was generally accepted.’
‘How did you find this work?’
She smiled broadly, the left side of her mouth sagging only slightly. ‘Really exciting. Really exciting. And I guess I would know if my advice was taken or not, judging from the cabinet minutes as to what actually happened in cabinet.’
‘Any comments to make on the prime minister himself? Did you have any dealings with him?’
‘Yes, I really liked him. I did have a few dealings with the prime minister, and he was a very easy man to get along with, and he was hard not to like.’
‘Would you have a message for him, at the moment?’
She paused, thinking carefully, her longest pause of the day so far.
‘Please don’t put end-of-life issues on the backburner. It’s a really important issue, and as our population ages it’s going to become more and more important. So please deal with it. Please deal with it and don’t shy away from it, because actually, it is popular.’
‘What specifically would you like him to take up and do?’
‘I would like to see legislation that clarifies a process for enabling physician-assisted dying for terminally ill patients.’
‘Why do you think there’s reluctance to take this up?’
‘There are divided opinions on it. But actually the polls have shown the vast majority of New Zealanders support some form of dying with dignity.’
‘Shirley, just listening to that, what do you think of your little girl?’
Shirley smiled, as Lecretia sat beside her and listened. ‘She’s making me proud, just like she always has.’
‘Do you think she has it in her, to make a change?’
‘If anybody can do it, she can. And when she first told us about what she was going to do, her eyes lit up, and I could see the passion burning there to make a difference. And for that alone I’d support her.’
‘The very fact that she’s doing it, at a time when she’s facing pain and suffering, is astounding,’ said Janet.
‘It is astounding. She might make history.’
‘Is that what you want, Lecretia?’
‘I want to make things easier for people coming after me,’ Lecretia told her. ‘I want to make a difference to the law. And it’s quite exciting that I’m in a position where I might be able to do that.’
She had just learned that chemotherapy was no longer an option. Her excitement and motivation amazed me. Where did my wife get her strength from? On the back deck, where she was being filmed, in the sunlight, she looked luminous. I adored her.
I realised that Lecretia had decided, somewhere deep inside her, that she would not be cancer’s victim. She would make every day count. If she suffered, but the law changed, it meant others would not needlessly suffer. With the cancer taking everything from her—her hope of children, her career, and her future—she had still found a purpose, one that was consistent with her calling as a reformer of the law.
With the final interview done, the Sunday team packed up their gear and left.
Later that day the phone rang. It was Catherine Marks.
‘I’ve got some bad news,’ she said. ‘The interveners were successful. But there are limitations on how they can participate. They can submit written evidence only on particular areas. It’s not clear if they’ll get to speak at the hearing. I’ll send you the judgment through.’
I reviewed the document. The Care Alliance was able to present evidence on how Lecretia’s case might affect the disabled community. Nothing else. And their written submission was limited to 6000
words. The good news, I surmised, was that the Care Alliance couldn’t claim their voices were going to be excluded. If we won, they couldn’t protest that they had not been allowed to participate. The date was confirmed, and the hearing was due to begin in four weeks’ time.
Chapter 19
ON 29 APRIL, we had our first appointment with the palliative care team, who came to our home to meet Lecretia, and to assess what she needed. They were aware of her High Court case, but didn’t tell us their thoughts on it. They treated Lecretia like any other patient.
She was given a wheelchair, and an electric armchair that tilted upwards so that she could get into a standing position from a seated one. She was given a walking frame too, but couldn’t use it, because her left arm couldn’t hold the frame properly. We gave them a copy of Lecretia’s advance directive, so that they’d know her wishes if she suddenly got ill. No artificial feeding or breathing, maximum pain relief, and the clause she inserted that said she could be helped to die if she reached a state of mental incompetence and the judge ruled it permissible. We felt she was still a long way from that point, but it seemed like the right thing for her to set that out clearly while she was still able.
On that day, we learned that in South Africa a lawyer named Robin Stransham-Ford, who was suffering from prostate cancer, had won a case in the High Court in Pretoria for the right to be assisted by a doctor to die. Stransham-Ford had been supported by DignitySA, the organisation formed by Sean Davison, the professor convicted of helping his mother to die in New Zealand in 2006.
In summarising the evidence, the judge in Stransham-Ford’s case said:
The common-law crimes of murder or culpable homicide in the context of assisted suicide by medical practitioners, insofar as they provide for an absolute prohibition, unjustifiably limit the applicant’s constitutional rights to human dignity, and freedom to bodily and psychological integrity, and to that extent are declared to be overbroad and in conflict with the said provisions of the bill of rights.
Mr Stransham-Ford was victorious, and instantly became a hero to many people around the world, including Lecretia. This was exactly the outcome we were hoping to achieve in New Zealand: the South African judge had found conflict between his country’s existing laws and its bill of rights. It was a brave, compassionate, and forceful judgment.
Lecretia’s legal team had begun the task of preparing evidentiary affidavits. Before the hearing began, every party to the case was given time to assemble their evidence. The evidence took the form of written testimonies from expert witnesses, each sworn to be true by their author and compiled by lawyers. Our affidavits were due first, then the interveners would provide theirs, before the Crown would file its own. Copies were distributed to all parties in the case at the same time as they were submitted to the High Court. We would have a chance to provide reply affidavits to the evidence that the Crown and interveners had presented. At the hearing itself, the plaintiff and defendant would make their case before the judge in the form of an oral argument, referring back to the points made and the facts declared in the affidavits.
Lecretia submitted two affidavits in her own name. She outlined her circumstances, her background, and her reasons for making her claim. She asserted that she had not been coerced, that she was not vulnerable, that she enjoyed her life and valued it, and that she was competent enough to make decisions about how and when her life should end. She described the cruel choice she faced: take her own life early, while she could, or face the prospect of a lingering death. She described the likely progression of her disease, and how she feared it might rob her of all dignity in her last weeks, or even months. She should be the one to decide when the indignity was too great to suffer. This was a personal question, she said, and no one else should be able to answer it for her. If she could choose to die with the help of her doctor, she could live as long as she still wanted to—much longer than if she had to take her life on her own. This freedom to choose would itself be palliative: she would no longer be anxious, the victim of her illness, worried about what might happen to her, but the architect and arbiter of her life, and her death.
The progression of her illness was affirmed by her GP, and her oncologist. Her oncologist said she had less than twelve months to live, and her disease was incurable. Her GP was willing to prescribe or administer life-ending medication if Lecretia wanted this to happen.
This was important, because it was evidence that there were general practitioners in New Zealand who believed in assisted dying for the terminally ill. Plenty of doctors had gone on the record over the years saying that helping a patient to die is unethical; it was up to us to prove that this view was not universal. The fact that Lecretia’s GP had treated her for years, long before she was ill, helped our case. Lecretia hadn’t gone shopping for a doctor who would back her up—and what were the chances that she was already seeing the only GP in the country prepared to do this? If her GP was willing to testify as such in an affidavit, there were certainly others in the country who would do the same.
Dr Libby Smales, a retired palliative care physician from Hawkes Bay, testified that she had encountered many patients throughout her career who had expressed a wish to die. She told the story of a desperate man who had driven his mobility scooter off a cliff to avoid the torment of the final stages of motor neurone disease. He did not die, and the fall compounded his problems, making his death worse than it ought to have been. She had also seen a fiercely independent woman, suffering from arterial insufficiency and intractable pain in her old age, choose to starve herself to death rather than face the eventual amputation of both her legs. With assisted dying, she might have lived longer. Dr Smales talked about the many benefits of palliative care, but also testified to its limits, particularly for independent people like Lecretia.
Dr Michael Ashby, a respected palliative care professor and former president of the Australian and New Zealand Society of Palliative Medicine, made a similar argument, testifying that palliative care, though a good thing, has limitations, just as medicine does. He estimated that between 10 and 20 per cent of patients who enter hospice care say at some point that they wish to die faster, but less than 5 per cent express such a wish consistently, over an extended period. He said that someone like Lecretia—independent, intellectual, active—was likely to be among that 5 per cent. Like Libby Smales, Dr Ashby said he knew of terminally ill people who had taken their lives early. These patients were not depressed, but wanted to truncate the dying process, and had chosen to overdose on medication while they were still able to do so unaided. He then spoke specifically about Lecretia’s case, and described the risk of coning, explaining that the brain would herniate down into the spinal canal, putting pressure on the brain stem, likely requiring her to be terminally sedated. Terminal sedation is the act of providing pain medication and sedatives to a dying patient to put them to sleep and withholding food and fluids until they starve to death. Lecretia was clear: she did not want to linger on, half alive, sedated until she starved. That was not what she regarded as a good death.
Other experts concurred in their affidavits that palliative care was not necessarily the best option for every patient, and that it had to be judged on a case-by-case basis. Dr Rajesh Munglani, a consultant in pain medicine, talked about the limitations of pain relief, and how advanced cancer, like Lecretia’s, can be unresponsive to palliation. He said she might ultimately be forced to choose death by suicide, like many others in her circumstances, or face unbearable pain and consequent sedation. Professor Owens, an expert in palliative psychology from the University of Auckland, asserted that someone with Lecretia’s personality, which he described as driven and perfectionist, might not respond well to palliative care. Both Dr Munglani and Professor Owens had over thirty years’ experience in their respective fields.
Professor Owens also made reference to a discussion published in the Journal of the American Medical Association by Drs Orentlicher, Rich and Mason that drew a distinction between com
mitting suicide, which results from impaired thinking, and making a rational decision to die, which does not. A psychologist who deals with suicidal patients tries to help them understand their symptoms are treatable. When a patient is both mentally competent and terminally ill, and makes a rational decision to die, that approach is not appropriate—the condition underlying the symptoms isn’t treatable, and it would be disingenuous to say it was. Professor Owens noted that suicidal patients who are prevented from dying often go on to enjoy long and happy lives, while a terminally ill person who makes a conscious, rational decision to die but is not permitted to do so lives only a short time longer anyway, and suffers physically and psychologically as a result. He noted too that suicide tends to tear families apart, whereas the families of those who make a conscious, rational decision to die are often brought together, and may find it easier to deal with their grief. The affidavit of Frank Spring, made on behalf of the New Mexico Psychological Association, drew a similar distinction between committing suicide and seeking help to die, describing them as ‘fundamentally different psychological phenomena’. He asserted that these two categories of patients must be treated differently by the law, so that the terminally ill could receive adequate psychological support at the end of their lives.
There were also affidavits from two retired GPs from Oregon, Dr David Grube and Dr Peter Reagan, who had over seventy years of experience between them. Dr Reagan was the first doctor to write a prescription of life-ending drugs under Oregon law. Dr Grube, in the eighteen years that assisted dying had been legal in Oregon, had only prescribed the drugs thirty times, and almost always to patients he knew very well and had known for a long time. He would only prescribe after discussing all other options with his patients, including possible treatments, palliative care, or doing nothing, and would discuss these over a period of months. He described his experience of prescribing life-ending medication to patients, and how without exception it was an enormous relief to them, whether or not they ultimately went on to use it—a point also made by Professor Owens, who cited evidence to support this view.