Lecretia's Choice

by Matt Vickers

  Lecretia was a law reformer, with a keen sense of justice and injustice. The case was framed around her, but her goal was to make circumstances like hers easier for others to bear. She wanted to make a difference. Given her story, and her expertise, she felt that she might just be able to do that.

  Chapter 22

  Discussion of the case remained intense in the days that followed. People were moved by Lecretia’s plight, they could sympathise with her wishes, and up and down the country they were talking about end-of-life choice in a way they hadn’t before. The topic was discussed at dinner tables and in pubs and restaurants around the country. Shouldn’t we have a choice about how we die? Shouldn’t we have some say about our final moments? What is the benefit of suffering at the end of life?

  Lecretia’s case was generating interest overseas, too. If the judge found in her favour it would become a landmark case. It was important to me that the decision went her way. I wanted her to change the world. I wanted her to never be forgotten. After everything she’d put herself through to make the case possible, she deserved nothing less.

  Her health was declining rapidly. The day after the case, she had trouble getting out of bed. She was brought into the lounge to sit in her armchair, where I read to her some of the published debate that followed the case. Catherine Marks called and told me that the word through the legal grapevine was that the Crown felt that they’d lost. This was a boost for Lecretia and me.

  On Friday, two days after the case, it was more difficult to get Lecretia out of bed. She wasn’t able to bend her body at all. The hospital had sent out a hoist to our house, and it arrived that morning, a device the size of a refrigerator. Apparently we were to put Lecretia into a sling and to move her around with this thing, but there was no way to get her into it. We called the hospice and a palliative care doctor and a nurse came to visit Lecretia at lunchtime. They took a quick look at her and decided that what she needed was a hospital bed. We called the hospital, and were told a bed would be delivered that afternoon.

  It never arrived. Lecretia was fine in the bed in the bedroom, but she wanted to be out in the lounge, with us around her, a part of the events of the day. She lay in her armchair, which was fully reclined, but her body was as stiff as a board, her posterior barely touching the armchair cushion, with most of the pressure on her neck and the backs of her legs. She began to have trouble swallowing, and would frequently choke when given water. She was lucid occasionally, but drifted in and out of a sort of fugue.

  Lecretia had been bright and awake just a few days earlier, but it was now apparent that she was possibly beyond the point of competence. Could consent be freely given in this situation? Whatever the judgment was, would she still be in a state to make a decision about her own life? Would her advance directive apply? Would I have to make the call about when her life no longer had quality? I tried to imagine what the healthy Lecretia would make of this, if she could be here, watching herself in this state. Would she regard her life, at this point, as essentially over? Would the Lecretia of the past decide that the Lecretia of the present had lived as much as she needed to? I never arrived at an answer.

  The hospital got in touch on Saturday morning, and with the help of a district nurse pulling strings, we arranged to pick up a proper patient’s bed. Lecretia’s friend Angela brought her SUV. We put the bed in the back and took it home. It took a while to put together, but now we could raise and lower each half of the bed to bring Lecretia into a comfortable sitting position.

  We covered Lecretia with blankets and a quilt that a colleague from the Law Commission had made her. Ferdinand was unsure of the bed at first, but after circling it a few times he gathered the courage to launch himself onto it. He curled up at Lecretia’s feet, and every so often would climb up her body, resting on her chest and pushing his face against hers. She smiled whenever he did so.

  Shirley had had some more feijoas delivered from Tauranga—the soft fruit was easy for Lecretia to eat. Shirley scooped the flesh out with a teaspoon and fed it to Lecretia, who insisted that her mother keep the spoonfuls coming.

  I sat beside her and retraced our memories. I described our wedding, and our holidays in the Cook Islands and Argentina and Morocco, lingering on the scenes I knew she would appreciate, the times we’d lain on beaches together, or swum in a lagoon, recalling the salty taste of the ocean and the smell of sunscreen and the feeling of the warm sand, the blue sky, and the sounds of strange birds. These memories seemed to make her happy.

  Lecretia spoke occasionally. At one point she looked directly at me and said, ‘Let’s go—I want to get in the car.’

  ‘Where do you want to go?’

  ‘Anywhere. Let’s go.’

  ‘We need to decide where we’re going.’

  ‘I don’t care,’ she said. ‘I need to get out of here.’

  Did she imagine that her illness was tied to this house, this room, this bed, that it was something she could cast off and walk away from? I wished that were true. I would have taken her anywhere if that were true.

  Every few hours she had a seizure. This was new. Her body quaked, her leg hammering against the air mattress and her foot against the end of the bed. Her mother or I would gently embrace her until it stopped. It was clear to us both that some Rubicon had been crossed. Lecretia had not suffered seizures since her fall in the first year of her illness. They had been kept in check by medication that was no longer working.

  By Sunday we had given up trying to feed Lecretia solid foods. We stuck to small amounts of soup and liquids, which she ate without complaint.

  On Monday, I called Catherine Marks, telling her that Lecretia had entered a precipitous decline. Was there any way to let the judge know? She promised to contact the court and to get back to us. The nurses visited, and Lecretia was turned and washed in her bed. She was now in adult diapers, unable to get out of bed even with assistance.

  It was incredible to me that my wife had been in a courtroom barely five days prior. It was as though she had used up all her strength to be there, and now she was letting her illness take its inexorable toll. It was creeping through her like a thick fog; each day more of it would obscure her essence. I was watching my wife die.

  On Tuesday we received word that Justice Collins was now aware of Lecretia’s deterioration. He asked, very kindly, whether she would like to receive an interim judgment, which would tell her whether she would be able to access aid in dying services under current New Zealand law. If the judge ruled that Lecretia’s doctor would not risk prosecution for helping her to die, Lecretia would have her choice. Lecretia agreed to receive the interim judgment.

  The interim judgment was delivered to Russell McVeagh on the afternoon of Tuesday 2 June. Catherine forwarded it to me. Sadly, and to my surprise, Justice Collins had ruled that a physician helping Lecretia to die in accordance with her wishes would continue to risk prosecution. He had answered the first of Lecretia’s questions. Did she have a choice about whether she could legally seek assistance from a doctor to die? She did not. Lecretia’s second question—whether her rights and fundamental freedoms were infringed by New Zealand law—remained unanswered. Justice Collins said that he would give his full reasoning in his judgment, due later in the week. But he had denied Lecretia her choice. She would die in whatever way it happened.

  Looking at Lecretia then, at the strength and courage with which she was enduring her decline, I suspected that she would have rejected assisted dying as an option. So why go to all this trouble?

  Because choices matter. Choices are what make us human, and not slaves. Without choices, we don’t have free will. We are held hostage. And when you’re dying, that last choice is a gift. An acknowledgment that, when it comes to your own body, you have the final say.

  That day she spent a lot of the time unconscious, unable to speak. She could barely open her one good eye. In the evening I relayed Justice Collins’ decision to her. I explained she would not be able to seek assistance to die, b
ut that her mother and I would do everything we could to make her comfortable and pain free, and that we would accede to the wishes she had laid out in her advance directive in accordance with the law.

  Lecretia listened to me as I explained. She could not speak, but she was able to share her feelings through her eyes and her expression. There was no mistaking her response. She was hurt and disappointed. She fixed me with a stare, as if to say: Isn’t this my body? My life? Her breath slowed. She turned her head away. I wondered whether I should have been telling her any of this. Her reaction broke my heart.

  I explained that the judge had not yet released his decision about whether her rights were infringed by current law. She turned to me again and looked at me with determination. A rights breach was the basis of the rulings in Canada and South Africa. It was still possible one might be found here. She knew a ruling in her favour could motivate our parliament to act, which in turn could benefit so many others who might find themselves in a state like hers.

  On Wednesday, Lecretia was almost totally unresponsive. Her eyes remained closed and she hardly moved. She was not eating and she was barely drinking. A pump gave her a steady supply of anti-seizure medication and a very low dose of morphine. Lecretia had begun to starve herself to death, and in accordance with her wishes we did not intervene, nor allow her doctors to do so.

  I talked to her but she rarely gave me any indication she could hear me. I held her hand and sat with her. The bed was close to the window. Outside there was a cherry tree whose leaves had yellowed and begun to fall. She could not see it, but it was beautiful and I described it to her, and the tuis and blackbirds nestled in its branches.

  She looked so peaceful that it was almost as if she was in a deep sleep. It seemed as if, were she to awaken, her eyes would open brightly and she would be restored. My head knew this wouldn’t happen, but my heart still wished it to be true.

  When I looked at Lecretia, I saw no suffering, no lack of dignity. I saw a strong, beautiful woman who was facing death with grace and strength. I didn’t know whether suffering and indignity were still to come, or whether she was suffering and she was unable to tell me.

  Nevertheless, I did not feel that my view, or anyone else’s, should stand in the way of Lecretia’s choice to live or die on her terms. As her husband, I chose to honour her as a human being with her own free will and her own choices. I honoured her as my equal, even in these circumstances. That is respect. That is dignity. That is love.

  The final judgment arrived on Thursday. We had received it in advance of the media, who would not have it for another twenty-four hours. It was a fifty-five-page document. Justice Collins had written it in a mere seven days. It was a herculean effort on his part.

  I read it and despaired. Not only had he not declared that a doctor would not be prosecuted under the Crimes Act, but he failed to find an inconsistency with the bill of rights. It was heartbreaking. All that work, all of that evidence, for nothing.

  But, re-reading it, I found glimmers of hope. He called Lecretia’s request a rational and intellectually rigorous response to her circumstances. He declared that the ethical questions her case had raised were far from settled, and neither side had a claim to absolute truth. He declared that Lecretia was not vulnerable, and not coerced, and added:

  Palliative care cannot necessarily provide relief from suffering in all cases. The limits of palliative care were explained by Ms Seales’ principal oncologist, experts who provided evidence in support of Ms Seales’ case and some of the experts relied upon by the attorney-general.

  Second, experts who gave evidence in support of the case brought by Ms Seales and some of the experts who supported the position adopted by the attorney-general agreed that pain is highly subjective. This means that Ms Seales’ perception of her pain is unimpeachable.

  Third, Ms Seales’ circumstances are such that palliative care may not ameliorate her physical pain. I have reached this conclusion by relying primarily on the evidence of the experts who have given evidence on behalf of Ms Seales because they tailored their evidence to her particular circumstances.

  Fourth, many of the experts, including those relied upon by the attorney-general, accept that palliative care may not be able to address Ms Seales’ psychological and emotional suffering.

  It was an admission that there are some whom palliative care cannot reach, and that the aims of palliative care were not sufficient in themselves to support a prohibition on assisted dying.

  This was further supported when Justice Collins accepted the evidence from the Canadian historian Dr Weaver that there were those in New Zealand who kill themselves in order to avoid the worst of their illnesses. It prompted an obvious question: would they kill themselves in that way if assisted dying were available?

  Despite taking on board the ethical concerns of the witnesses for the defence, Justice Collins felt that Lecretia’s circumstances resonated more with the experiences of those doctors who had asserted that patients in such circumstances feel empowered and reassured knowing that they can choose the time and surrounding circumstances of their demise.

  He also said Lecretia had consistently maintained that she was not vulnerable in any sense, and noted:

  She says that, notwithstanding her medical condition, her wishes have been carefully considered and reasoned. Ms Seales’ self-assessment that she is not vulnerable is endorsed by her doctor, who has consistently said Ms Seales is pursuing her requests in a positive, rational manner without showing any signs of depression or lack of full appreciation of her circumstances. Ms Seales’ statement of her belief that she is not vulnerable must be respected. Ms Seales’ application for the declarations she seeks is a rational and intellectually rigorous response to her circumstances.

  Nonetheless he was unable to rule in Lecretia’s favour. On the question of consent to be assisted to die, he found that the provisions prohibiting it had their basis in UK law, where ‘the interest of the state in preserving life overrides the otherwise all-powerful interest of patient autonomy’.

  In summary, he said:

  In reaching this conclusion, I emphasise that I have applied a legal analysis. By focusing upon the law it may appear that I am indifferent to Ms Seales’ plight. Nothing could be further from the truth. I fully acknowledge that the consequences of the law against assisting suicide as it currently stands are extremely distressing for Ms Seales and that she is suffering because that law does not accommodate her right to dignity and personal autonomy.

  Although Ms Seales has not obtained the outcomes she sought, she has selflessly provided a forum to clarify important aspects of New Zealand law. The complex legal, philosophical, moral and clinical issues raised by Ms Seales’ proceedings can only be addressed by parliament passing legislation to amend the effect of the Crimes Act. I appreciate parliament has shown little desire to engage in these issues. The three private members’ bills that have attempted to address the broad issues raised by Ms Seales’ proceeding gained little legislative traction. However, the fact that parliament has not been willing to address the issues raised by Ms Seales’ proceeding does not provide me with a licence to depart from the constitutional role of judges in New Zealand.

  On reading the judgment, I got the sense that Justice Collins knew the right answer but hadn’t found a way to give Lecretia the choice she wanted through the law as it was written. It was almost as if he’d started out one way, got into the legal analysis, and changed his mind. Though the judgment was measured and reasonable in tone, there was the unmistakable implication that this was something our parliament had to deal with, and that it had been remiss in its failure to do so.

  After reviewing the judgment, I read as much of it to Lecretia as I could bear. I don’t know whether she heard it. She was breathing heavily, her eyes were closed, and every so often she would let out a soft groan. Was this to be her final memory? That she’d failed to achieve what she had fought for? It seemed cruel to do that to her—and yet it felt important
for her to know. What was happening was wrong, but it was the law.

  On Thursday afternoon, Lecretia was completely unconscious, breathing slowly, the slightest gurgle in the back of her throat.

  A press conference was scheduled for Friday in response to Justice Collins’ ruling. I sat beside Lecretia as I began to compose our statement. Every so often I’d hold her hand. At about 9 pm I went to bed. I was exhausted. But I was woken at about 11 pm by Larry. ‘Matt,’ he said, ‘I think something’s happening—you’d better wake up.’

  I came out to the lounge and there was no doubt things had changed. Lecretia’s eyes were open and there was a loud gurgle in her throat, much louder than before. The volume of it filled the room, a thick, crackling rattle. I called the nurse at the hospital and asked what to do. She said this was normal. ‘Has no one told you what to expect?’ She advised we give Lecretia Buscopan. I prepared the syringe and gave her some.

  It didn’t appear to make much difference. Shirley, Larry and I sat beside the bed as Lecretia continued to struggle for breath. Her eyes remained open. She looked at me, at her father and at her mother, and we said things like ‘It’s okay, Lecretia’ and ‘You’re okay’ and ‘We’re with you and we love you’ and ‘Matt’s here, Mum’s here, Dad’s here’ and ‘We love you, Lecretia.’

  I could hear that the liquid in Lecretia’s throat was thickening. Her breath stopped a couple of times. She’d exhale and hold, and then suddenly inhale sharply. I moved her head slightly to make her comfortable and a long ribbon of liquid snaked from her mouth and down her front, white like sunscreen.

  In those moments I remember feeling helpless. I wanted to do something for Lecretia, to help her to breathe better, or, yes, to help her on her way, but neither Shirley nor Larry nor I did anything. We watched helplessly as Lecretia fought to breathe, her eyes open, taking us in, and she drowned. It took an hour and a half. Then she didn’t breathe again.