My interest in assisted dying began in 1985, when my father received what today might be described as ‘non-voluntary euthanasia’. He was seriously ill at home, with a combination of a long-term digestive problem and a chest infection, and I had come to look after him. Late one evening, he was in so much discomfort that I phoned his GP, who fortunately was on call that night. The GP said that he should go into hospital, but my father was adamantly opposed to this. The GP knew my father well. He said that he would give him something to reduce the pain and help him sleep, but that if he wasn’t better in the morning he would have to go into hospital. He gave him an injection of what I presume was morphine. After doing so, he told me that he had given him a strong dose and that it was possible that he might not wake up. His prediction was right: my father died in his sleep in the early hours of the morning.
I suppose some people would have been upset or angry about what the GP did, but I was not. My main emotion was relief (for my father, who was now at peace and wouldn’t have to go into hospital and, I must admit, for myself, since I would no longer have to worry about how to care for him), and I was therefore very grateful to the GP. As a result of this incident, I did some research about euthanasia and joined what was then the Voluntary Euthanasia Society – now Dignity in Dying.
Since then I have learned much more about assisted dying and experienced many other end-of-life experiences, the most traumatic being that of my husband in 2010-2012. The more I have learned and experienced, the more strongly I believe in the importance of choice at the end of life, including the right to an assisted death. However, ironically but perhaps not unusually, the more I learn, the more I realise how complex this issue is and how difficult it is to provide appropriate legislation.
My husband’s experience illustrates many of the problems. In 2010 he had a major stroke. He was 88 at the time – 25 years older than me. It left him partly paralysed, incontinent, unable to swallow or speak and mentally ‘confused’. However, although confused, he was sufficiently compos mentis to know what had happened and the possible implications. We had just bought an apartment in Crete and were planning to move there in a few months’ time. He was really looking forward to this and devastated by the thought that now he might not be able to go. The doctor who was treating him wanted to insert a feeding tube through his nose in order to keep him alive. My husband had an advance decision, which stated that he didn’t want to be resuscitated, so the doctor asked him whether he wanted the tube. My husband readily agreed.
This was the beginning of a long and painful process of ‘treatment’, which ended up with his death in a nursing home two years later. A week after the stroke he was transferred to a specialist rehabilitation unit in a different hospital. There it was decided to replace the nasal feeding tube with one directly into his stomach – something known as a PEG. However, before this could be done, there was an outbreak of C. difficile, a hospital ‘superbug’ that causes acute diarrhoea, in the ward and my husband was one of the first victims. His health deteriorated and he was subjected to strict quarantine regulations, which, among other things, put all his rehabilitation treatment, including the insertion of the PEG, on hold.
Eventually, the quarantine was lifted, treatment was resumed, the PEG inserted and, after nearly four months in hospital, he was discharged and came home. However, less than two weeks after coming home, the C. difficile returned. I tried to care for him at home, but it was too much for me, and so, after what was one of the worst weeks of my life, he was readmitted to hospital. I was then told that the C. difficile could recur at any time. Therefore, after discussion with my husband and with a combination of relief and regret, I accepted the offer of a state-funded place in a nursing home.
My husband and I both did our best to make life in the nursing home as pleasant as possible. He accepted that this was now ‘home’ and, since I spent a large part of each day there with him, it became my second home. However, it was obviously not the way in which either of us would have wanted his life to end. Moreover, the situation could have continued indefinitely. He was severely incapacitated, physically and mentally, but he was not terminally ill. He eventually died quite unexpectedly, not from any direct effect of the stroke or the C. difficile, but from pneumonia, which he developed as the result of a virulent chest infection that swept through the nursing home and caused the death of several residents.
Since he was not terminally ill, my husband would never have qualified for an assisted death under the terms proposed in the Marris Bill that was defeated in parliament in 2015. In his case, the critical decisions that had to be made related to the withholding of treatment. The first and most important of these was made the day after the stroke, when he was asked if he would agree to have a feeding tube inserted to keep him alive. I often wonder whether, if he had known how things would work out – or if he had not been so looking forward to going to Crete, he would have agreed. I never dared ask him – partly because I wasn’t sure if he was sufficiently aware of the sequence of events to be able to answer but mainly because of my own guilt. Although I had not said anything at the time, I had not wanted him to have the tube inserted. I had wanted him to die then, and I felt guilty because I knew that I wanted this not only (or even primarily?) for his sake, but for my own. I didn’t want to have to face what I knew would be a long and difficult process of caring for him.
There were several subsequent occasions when similar decisions had to be made. The first was whether or not to have the PEG. He agreed to this, but at that time it looked as if he would make at least a partial recovery and so perhaps be able to go to Crete. The second was what to do when the insertion of the PEG was delayed for weeks. During that time, he repeatedly pulled out the nasal feeding tube and resisted attempts to replace it. At one point, he became so weak that a doctor gave him a clear choice: we put the tube back or you die. Reluctantly he agreed to have the tube put back. A similar situation occurred when he was re-diagnosed with C. difficile while at home. He was told that if he didn’t go back to hospital and receive treatment, he would die. Initially, he chose to stay at home and die. But as he became weaker and it became evident that I could not care for him at home, he reluctantly agreed to go into hospital – and going into hospital meant getting treatment.
Maybe I should just turn my face to the wall?.
During his time in the nursing home, his health stabilised and the main question then was whether he was prepared to tolerate such a life. At no time did he actually say he wanted to die. However, at times he appeared to be thinking about it. On several occasions, he said to me: ‘Maybe I should just turn my face to the wall?’ This was an expression he had used before the stroke. He had thought that when his time came, he would be able to just ‘turn his face to the wall’ – in other words, to consciously give up the will to live. However, when he said this in the nursing home, he didn’t seem either to be very sure that he really wanted to do it or to know how to do it.
The situation was complicated by his mental impairment. Much of the time he was fully aware of the world around him but there were times when he was very confused. Moreover, he had very little sense of time. One day, when he had been in the nursing home about 18 months, I asked him how long he had been there. He obviously had no idea, so I asked him whether it was six months, a year or 18 months. He hesitantly suggested six months. This raises another difficult issue related to end-of-life decisions: when does someone have mental capacity? In my husband’s case, it would have been very difficult to assess this.
From this and other end-of-life experiences, I have drawn five conclusions:
- I don’t want to end my life in the way that my husband did. In my view, it is the quality of life that is important, not the length. Moreover, I don’t want to be a burden either on my family or on the state. I estimated that my husband’s care after the stroke cost the state around £100,000. Was that the best use of scarce resources?
- In my view, assisted dying should, as MDMD proposes, be available ‘to all mentally competent adults with incurable health problems that reduce their quality of life permanently below the level they are willing to accept, provided this is their own persistent request.’
- For most people, withholding treatment is likely to be more relevant than assisted dying as a way of controlling how and when one dies.
- Advance decisions are thus very important. In the light of my husband’s experience, I have expanded mine to say that I don’t want to be artificially fed or to be treated for an illness that is likely to be terminal or leave me severely incapacitated.
- Society as a whole, and the medical profession in particular, needs to change its attitude towards death. I believe that death should be seen as a natural end to life and that the emphasis should be on improving the quality of life, not extending its length.
I have documented the last two years of my husband’s life in the form of an online book. In order to protect the interests of those involved, I wrote it under a pseudonym and changed the names of people and places. The book is called End-of-Life Experiences: the Story of Thomas. The author is Tina Bernard and it was published online by Amazon Books in 2014. The kindle version is free of charge.