When a gravely ill man chose to discontinue his treatment and let himself die, his wife faced the most difficult week of her life. But she also understood the value of a proud and planned exit. By Carolyne Lee.

Life and death decisions

Looking back, I realise Bill must have had euthanasia on his mind for quite some time. The moment when he told me his decision is seared in my memory, replaying like an old newsreel whenever I summon it, and often when I don’t.

It was a Saturday in early December. Arriving home about midnight, we had just driven into our driveway. In my mind I can still hear the motor running, can make out the rhythmic susurration of the windscreen wipers, the soft rainfall on the car roof. It was unseasonably cold, even for a capricious Melbourne summer. Before switching off the car engine, Bill turned to look at me. “It’s time for me to go,” he said. Just like that. He would stop having dialysis, he went on, and would let nature take its course. 

I already knew that without the kidney dialysis he had three times a week, his blood could not be cleansed, a job normally carried out by healthy kidneys, but in his case done by machines these past two years. If he stopped his dialysis, toxins would gradually build up in his bloodstream. Within seven to 10 days he would die. 

I also knew that he’d received that afternoon the results of some scans he’d had to investigate the intense back pain he’d been experiencing for a couple of weeks. The results revealed there was serious damage to his upper spinal column. Three decades earlier he’d had a steel rod grafted along the length of his spine, not long after the car accident that had made him a teenage paraplegic. In the past few years, this steel rod had shown signs of a fracture, but now it had severed, and the two broken ends were abrading his vertebrae. 

Earlier in the day, we’d felt too shocked to take in the full impact of what the results foretold, and then we’d had to hurry out to an end-of-year work dinner. Bill’s work was always so important to him that it would have been unthinkable for us to miss this event. He reminded me to bring the Panadeine in my handbag, but I didn’t need reminding. Lately he’d been going through a packet every few days. 

During the evening he didn’t want to talk about the scan results, even in the few quiet moments between speeches and presentations. All night I’d had the sensation of waiting. Too scared of what he might say, I hadn’t dared to broach the subject. Now we had just returned home; I had been right to be scared. 

In his usual calm tone, he began to tell me of his decision. I felt hollow, as if all the blood were draining from my body through some unseen leak. He was outlining the steps he would take, in the same sort of matter-of-fact way he would discuss a new program at work. My sense of being caught in a nightmare deepened. I had to do something. Anything.

 “No,” I said, turning to him swiftly, “surely this isn’t your only option. What about–” But he cut me off, something he hardly ever did. “Don’t try and talk me out of it. To repair my spine will require years of me lying in a hospital bed, and even then there’s no guarantee of success. I’ve been through it once. I can’t do it again. I need your help. Please, just say you’ll support my choice.” His voice was controlled and firm. 

“Okay,” I said slowly, although nothing felt okay about this. “But I can’t give you anything,” I said, meaning there was no way I could give him any medication that would hasten his death. 

I don’t necessarily believe euthanasia is wrong, and intellectually I feel people should have the right to die when they want to. It was just that I could not physically give another human being, not even my very ill husband, any drug that would hasten his or her death. Subconsciously I may also have been thinking of my two boys, still only 16 and 19. They were too young to lose their beloved stepfather and then have their mother charged for assisting an unlawful act.

Bill’s next words showed me he’d understood my thoughts: “No, you won’t need to give me any medication. Stopping the dialysis will be sufficient.”

A sort of mental foothold appeared in my mind: he wasn’t really going to kill himself, so it wasn’t really full-on euthanasia, but a more passive type. He might not even succeed, and it might not happen. But even as these thoughts circled in my head, I knew they were false. What he was going to do might be technically passive euthanasia, if the technicality really made any difference, but he was still going to die. It was a death he was choosing; something he would not be choosing if he were physically well. So technically it was an act of euthanasia that, then as now, was illegal in all states of Australia. 

1 . Complex issues

Our situation was complicated. Bill had had both kidneys removed two years earlier, in late 1999, following several years of chronic kidney disease. His kidneys were so badly infected that they caused him to suffer several bouts of septicaemia. He spent 1999 in and out of hospital. Mostly in. Each time, the doctors treated him until he seemed well enough to return home. Yet with each bout of illness, it became clearer that Bill’s kidneys – if left to their own devices – were going to kill him. The only solution was for him to have his kidneys removed, meaning he would require a full blood dialysis in hospital, three times a week for about four hours, for the rest of his life. There was no other option. So he went ahead with the operation.

During this time, Bill had a reasonably good quality of life. In February 2000, after he had recovered from the operation, he returned part-time to his job as head of a large department in a TAFE institute, resuming his position full-time about eight months after that. But about a year later, the dialysis was taking its toll on his other organs; and there were additional chronic health problems stemming from his long-term paraplegia. The tipping point for Bill was the damage to his upper spine. He’d endured savage pain for weeks, and now he knew what was causing it. The repair, if indeed it could be repaired, would mean at least a year in hospital. 

By the time of his decision Bill had spent more than three years needing semi-regular nursing care at home. This was a role that was filled by me. It’s not a role that people imagine for themselves when they get married, and certainly not a role most people in their 40s would embrace joyfully. We both felt, wordlessly, that Bill’s illness and its complications had stolen from us a good part of our normal life as a couple. There was no point in railing against it, and we kept this particular unhappiness hidden from everyone, especially from the two boys we were raising. Besides, there was much in our family life to make us happy – Bill was a devoted stepfather who filled the boys’ lives with laughter, learning and sport, as well as linking us with his own large, warm, extended family.

That evening, when Bill told me he intended to let himself die, he followed the announcement by saying, “I want it to be at home. If you can manage it.” I didn’t even have to deliberate about whether I could “manage”. It was unthinkable that he would go off to hospital to die. In any case, as we were to discover, he would probably not have been allowed to refuse dialysis in hospital, due to the laws covering euthanasia in Victoria. He simply would not have been allowed to choose to die.

At the time, I had no more than a vague idea of these laws, and it was only later that I did some research to fill in the gaps in my knowledge. I discovered that each state in Australia has its own laws dealing with end-of-life issues, none of which clearly allow a terminally ill person to ask for and receive assistance to die. 

In South Australia there is a law that allows a patient to refuse treatment as well as to make positive directions about their own treatment that could, for example, include palliative care instead of dialysis. In Victoria, there is a similar law, the Medical Treatment Act 1988, under which a person wishing to refuse medical treatment can complete a form, in tandem with a medical practitioner, who certifies the person is “competent” to make this decision. Bill and I knew nothing about this form at the time, and none of the three medical practitioners we told of his decision informed us about it. 

As I looked more deeply into the patchwork of processes and precedents concerning end-of-life laws, I could see that within the law more generally there exists the principle of autonomy or self-determination that applies to all human beings. Against this principle of self-determination, there apparently needs to be balanced a second legal principle: the principle of what is in a person’s “best interests”, and whether that person is capable of judging what their best interests are, or whether someone else would need to make this judgement. 

Clearly, the principle of autonomy can justify a person allowing himself to die by omitting treatment, such as refusing dialysis, although only if he is of “sound mind” or ‘”competent”. This refusal does, however, need to be accepted by those who would otherwise give the treatment, an acceptance that in Victoria at least must be what is intended to be shown by the doctor’s signature on the Medical Treatment Act form. These last two aspects – of “sound mind” and “by those who would … give the treatment” – were to become crucial in Bill’s situation. Characteristically, his mind was not only sound but also shrewd enough to devise ways to work around the various obstacles, with my support. The enormity of what we did, including the emotional toll of caring for him in his final week, made this the hardest thing I’ve had to deal with in my life. 

2 . Importance of choice

In trying to understand more fully why Bill chose to do what he did, I came to realise the importance to us all of rational choice. After reading the work of researchers, such as Sheena Iyengar, examining the human activity of choice, I realised how much autonomous choice is an innate and very strong human trait. Faced with an ill and damaged physical body that would no longer permit what he saw as a normal existence – for him or those close to him – Bill’s choice to die was a form of self-determination and even power. But although it was a peaceful, loving death, surrounded by those closest to him, it was something he most certainly would not have chosen had he been able to look forward to even a remotely normal life. 

As I got out of the car that December night, and watched Bill’s wheelchair descend slowly from the roof of the car on its electric pulley, before I unfolded it for him as I always did, lining it up with the open car door, I had no idea how we were all going to cope. I prayed that the boys would be absorbed in watching television, or still out with their friends, as I knew I could not look at them without my face betraying everything. Bill and I had yet to discuss all the practical points of how we were going to proceed, how we were going to break this to everyone, how I could support him as he died, in the place and at the time he chose, in the company and care of those he loved.

3 . The unreality of it

The next day, Sunday, Bill was in so much pain he stayed in bed all day, asking me to say nothing to anyone just yet. He said he didn’t want to talk, and just drifted in and out of sleep. Maybe he needed these hours, alone with his thoughts, so he could assess whether it was what he really wanted. 

In many ways, this was the hardest day of all. I felt so totally alone with the knowledge of his decision. It was almost too terrible to comprehend, so my mind reacted by not comprehending it. Every time I went into the bedroom to check on Bill to see if there was anything he needed – painkillers, a drink or food, help with rolling over – it felt exactly like all the other times he had been ill in the past eight years: something we didn’t much like but would get through with medical procedures and patience. 

A few times during that day I did approach a sense of reality – small windows through which I glimpsed the loss and absence and ultimate dislocation to which my sons and I were moving. At those times it felt as if steel encased my head, and my internal organs, while the rest of my body moved as if switched to automatic pilot. I had to concentrate very hard to avoid crying. When I was in that state, everything seemed meaningless and I wondered how I would possibly survive what Bill was going to do, how I would somehow salvage a carapace of family life for my sons, how I would proceed with a life in which I would write “widow” on official documents. Then almost imperceptibly this feeling would lift and the unreality returned, but with it a fake sense of “normality” – how I must have felt in life “before”: prior to Bill telling me of his decision.

On Monday morning when Bill was still in bed, one of the doctors (I’ll call him N) rang from the hospital where Bill had his regular dialysis, to talk to him, probably to arrange the operation to try to repair his spine. I told N of Bill’s decision. There was silence for a second, then he said, “I don’t believe you,” adding that Bill was always one of the most positive of his patients, and demanding to speak to Bill. I took the phone into the bedroom. 

Afterwards Bill told me that N wanted us to go see the psychiatric doctor, and had made an appointment for us the following day. “We’ll go to keep him happy,” said Bill, “but it won’t make a blind bit of difference.” Bill then asked me to go buy him Coke, orange juice, chocolate, potato chips – all the things that are high in potassium and that the doctors had forbidden for the two years he had been having dialysis. 

On Tuesday I helped Bill get out of bed and dressed, and drove him to the hospital for the 11am appointment. The psychiatric doctor grilled Bill for an hour and a half about his decision, his motivations, about his family and professional life. Then N talked to Bill, then they both talked to him together. They wanted him to reconsider, to delay, but Bill was quietly firm. I said nothing. No one asked me anything anyway, which was fortunate, as I felt that if I were to try to talk, no sound would come. 

“I think you are of sound mind,” said the psychiatric doctor, “and not depressed.” But N said he would like a second opinion on that, and told Bill he wanted him to see the head psychiatric doctor. They set up a meeting for 5pm that day, N saying he could organise a bed in the renal ward where Bill could stay until the appointment. I could see Bill was starting to get agitated at the idea of being admitted to the ward, so I suggested we go home for a few hours. As we got in the car, Bill said, half smiling, “Good thinking back there, 99. But we won’t be returning.”

At home, we sat around our dining table with our two boys, and Bill quietly told them what he’d decided. I’d already told them part of the story, that the steel rod in his spine had snapped, that it was inoperable, that he would probably lose the use of his one good arm, would spend the foreseeable future in hospital, having to lie motionless, and even after all that he might not survive. So he would stop dialysis.

They were too shocked to say anything. One bent over and rested his forehead on his folded arms, the other reached for Bill’s hand. 

Bill then telephoned his parents and siblings to tell them. In the early hours of Wednesday, Bill’s two brothers arrived. W had driven non-stop from his home in South Australia. G was alternately laughing and crying, a little high or drunk, or both. Bill had gone to bed but he’d been expecting them. They sat on either side of the bed, the three of them sharing a joint. Their talk and laughter drifted through the house along with the subtle spicy smell. 

About 4am, I started to unfold the guest bed in the study where Bill had told me to sleep since his back pain had become even worse a week earlier, making him restless at night. But G put his hand on my arm, saying, “I think you should go back to your bed.” I could see he was right, but at the same time I wanted to run away. This was too hard. I couldn’t do it. But somewhere inside me a voice said, “You must.” 

I put on my pyjamas, cleaned my teeth and climbed into bed beside my husband, whose body was gradually closing down. I cuddled up to him, as if it were just a normal night, as if Bill were not choosing to die, already on his journey away from us. He couldn’t hold me, he was too weak, in too much pain, but he was glad I was there. He said the past 10 years had been the best of his life.

The next two days were like living underwater. Every movement I made required terrible effort. Hours and hours passed and I could think of nothing that I had accomplished. I would try to go out to buy food but would find myself weeping in the supermarket aisle and would have to return home empty-handed. Friends brought casserole dishes full of food. 

Bill’s local GP came each day, as did the palliative care nurse. The doctor had organised morphine for pain, and a sedative. At the required intervals I would pour the prescribed dose of morphine into a small medicine cup and hand it to Bill.

People came and went. Bill’s brothers were mercifully almost always there, and of course his parents came, his sister and her husband, and their children. And not one of us, not his brothers, parents, sister, nephews or niece, tried to talk him out of his decision.

On Friday morning Bill gave me instructions: “Lilydale Crematorium, and a cardboard coffin like George Harrison’s,” he said. “No church, but prayers for the believers as that will comfort them. And for music, ‘Imagine’. The boys can play it, if they can learn it in time.” He seemed to enjoy issuing these edicts. Unfortunately, as I discovered later, Australian law does not permit cardboard coffins. But the boys played John Lennon’s “Imagine”.

Later that afternoon Bill’s mother and I went to the local shopping centre because she wanted to buy Christmas presents for her eight grandchildren. While we were gone, the boys and one of their friends looked after Bill. The friend was going to start some subjects in Bill’s department at the TAFE college in two months’ time. Bill discussed with her which subjects it would be best to start with, and which teachers to avoid. 

By 7pm when we returned home, Bill was asleep. I curled up on the bed next to him. His breathing seemed different to how it had been, but he was not noticeably in pain. An hour later the palliative care nurse arrived. She gave him an injection of morphine, the only dose he had not taken by himself while fully awake. We played “Imagine” on the portable CD player, and then left him while we ate dinner. 

Half an hour later my elder son went to check on him, but returned almost immediately. Bill didn’t appear to be breathing, he said. We all went in to the bedroom. Bill was lying on his side, his face relaxed, his forehead cooling, but his body still warm. I felt an ineffable sadness – one shouldn’t have to die at 45. But I also felt a huge sense of relief that he was beyond pain, that he’d slipped away so comfortably, that we’d had this week together just the way he chose. 

Years later, trying to write about Bill’s death, I found these words by Nietzsche that described it so perfectly: “To die proudly when it is no longer possible to live proudly. Death freely chosen, death at the right time, brightly and cheerfully accomplished amid children and witnesses: then a real farewell is still possible, as the one who is taking leave is still there…”

And so it was with Bill’s death – a deliberate but never a suicidal choice, made by the soundest of minds – about which there should be no conspiracy of silence. I’m telling Bill’s story now because, as a society, we need to ensure our end-of-life practices do not violate the essential principles – that we claim to hold so dear – of autonomy and self-determination.

This article was first published in the print edition of The Saturday Paper on Jun 21, 2014 as "Life and death decisions".

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Carolyne Lee is an author and a senior lecturer in media and communications at the University of Melbourne.