Bramble and Bill

February 1, 2017

Assisted Dying

By Paul Dickson

As I start typing I want the reader to know a bit about me. I loved my Dad (Bill) and I loved my dog (Bramble), that’s the most important thing.

I am a Humanist. I don’t believe in what I see as a fictional deity – there’s an awful lot to choose from. I believe that humans should put humanity first, that inherent good is within us and that we do not need a code of conduct drawn from texts created before the Enlightenment.

I know that science is factual and that it is evidenced – it is what we have to work with in the context of gaining a true understanding of the world. Is science perfect? No. Sometimes advancements in science can be made which do not take account of the negative impacts they may have. A practical example of this relates to the drive to extend lives without looking at consequences. This has led to people, in some instances, being ‘kept alive’ well past the point that their quality of life may have disappeared. You may now see where I am going…

So what happens when science and ‘faith’ mix?

Bramble

Bramble was our much loved Border Terrier. He was a character – whilst following the usual terrier traits of killing rabbits, rolling in fox poo and digging holes he loved to be with my wife and me. He entertained, he played, he cuddled up and showed all the signs of positive emotion when we returned from work. We reckoned that he loved us and we certainly loved him. He was there for us when the kids left for University and he was a great listener!

He had a few challenges in his life. A deer kicked him in the face and extensive surgery was needed which was successful. He had an operation on his leg which was traumatic but, again, was successful. I still remember coming back from work the day of the operation and the effort he made to greet me.

As he reached fourteen he became increasingly deaf and blind. At times he was confused and he grew incontinent. We discussed his condition with our vet, but as a family we knew that he was becoming increasingly unhappy and distressed. On the 22^nd June 2015 the vet came to our house. Bramble was given a small injection to make him dozy, and an injection of pentobarbital was administered. He fell asleep immediately and, within seconds, was dead.

I cried, my wife cried, and we found a huge hole in our lives which was difficult to fill. We had a positive grieving process for Bramble, leaving happy memories with us.

During that time I wished the same humane process could have been provided for Bill.

Bill

Bill was my father. He came from a shepherding background, was in the army after the war, joined the police, and then set up his own cab business. He eventually became Chairman of the Scottish Taxi Federation. He was not a Christian and had strong views on what was right and what was wrong.

He was a private man, and a father of the sixties – at times distant but there when needed.

Bill retired back to a small village in the Borders at the age of 66. At 70 he had his first ‘funny turn’, which was a stroke. A series of mini strokes in his early 70s led to increasing memory related problems with my mother becoming carer. At 80 he moved to a care home with dementia moving towards an advanced stage.

The onset of the illness was gradual with family increasingly having to do things for him. In the first years of the disease both my mother and I talked to him about how it might progress. He said to me that he ‘would rather drown himself than go into a home’, and that he ‘would rather die than lose his dignity’. There was never any real dialogue relating to options and the nature of his dementia with medical specialists and practitioners. He was given no choice; his path would be the path followed by many others – a fait accomplis. He did attend the daycare centre for a while and his natural instinct was to attempt not to go – he hated it. He hated what was happening to him and he fought hard to retain control.

Bill had no choices.

By his late 70s he didn’t recognise me. The transition to the care home saw him increasingly immobile. At this point I believe that I grieved for the loss of my father. I didn’t like visiting him I was like a stranger and he gained nothing from my being there. My mother continued to visit him almost every day until he died. The sole pleasure she received was when he said a word or she thought he recognised her. Sadly this was wishful thinking.

So what do I think his life was like? Anxiety is the word which springs to mind. While we had no issues with his day to day care it was clear he was unhappy. He fought back at being washed by staff, he was clearly distressed when other patients came into his space, and often he looked fearful as he, I assume, tried to make sense of things as his brain deteriorated.

Throughout his eight years in the Care Home I wished he would die. I know that this is what he would have wanted for himself. This is what I would want. Bill had a DNR notice applied which meant that he was not to go to hospital should he have an ‘episode’. Sadly with the few he did have he was put into the recovery position and pulled through.

My family supported a decision about a much loved pet. The decision to put Bramble to sleep was made in the interests of the dog so as to avoid suffering and distress. Bill experienced massive suffering and distress and had no quality of life. There was no such option for him and he lived many years in the home in a manner we deem unacceptable for animals. As his death approached any expectations we had of a peaceful short bedside vigil were not met. Bill had a slow, drawn out, distressing death.

The dying process took weeks after a number of ‘episodes’. Staff continued to feed him and give fluids when they could. As he became more ill they still applied moisture by mouth. Bill lived for eight days with the only fluid being from a moist cloth to the mouth. He began to waste away over a two-week period to the point of being skeletal. We asked if anything could be given to bring his suffering to an end. The home did refer to the GP but the clear answer was no, things would have to run their course. The care home followed a code of practice established through law and the demands of religion. In his final four days he was given new medication which, it was suggested, might speed up the process. He had not eaten or had fluids for over a week at this time. We were beside his bed as he struggled with his last breaths.

Bill died in October 2016, eighteen years after the first signs of dementia. My honest view is that his death was inhumane. I would not allow my dog to go through this horrendous experience so why my dad? The current system of dying does not allow for a death to be expedited, even at the will of the patient when it is clear that the illness is terminal. If death is expedited it is done tacitly, adhering to specific ‘acceptable’ boundaries.

My father died a slow lonely death. I did not grieve when he died. I grieved when my dog died. I would have liked to have grieved for my dad. I would like to have remembered him as he was. I wish he could have had the option to end his life when the illness took hold. My memory of my father is of a scared old man with no means of communicating, curled up into a foetal position.

People say time is a healer. However, I cannot forget his terrible death, and have to record this event as starting point to ensuring that, at some time in the future, no human should have to suffer in this way.

What do I want?

I want people to know that they are not alone when they face a situation similar to mine. I want people to talk about this and not just sweep it under the carpet – putting it down to a bad experience. It is a common experience now. I want dialogue about the option of assisted dying to take place in the context of the wishes of an individual and family – not dogma or entrenched political views from the last century.

Re-assessment in line with practice in Canada and other European states needs to be examined as an option. An individual should be able to retain control of their life, and death, when a terminal illness is diagnosed. They should be able to end their life without the need to go to another country. We all deserve the right to die with grace, dignity, and the support of family.

I would go further than this in the case of dementia. There is much debate about a person needing to be of sound mind to be able to decide to end his or her life. In the context of dementia, it is important that any individual should be able to make such a decision at the onset of the disease – in the early stages. That decision could not be made in the advanced stage of the disease.

Science has made it possible for people to live longer but with, in many cases, absolutely no quality of life. Outdated beliefs embedded in legal practice put suffering before painless release.