It’s the stories of ordinary people that inspire our work and keep us pushing for a change in the law to legalise Assisted Dying.
If you would like to share your story contact us here.
I am campaigning for a change in the law on Assisted Dying because people suffering terribly due to illness should not be forced to stay alive against their will, when there is no hope of cure or, when they feel that the possible treatments for their illnesses will simply prolong their suffering.
My mother’s death in 2013 reinforced my long-held view that the law should change to allow people to have help to end their lives at a time chosen by themselves. She had coped with years of illness but her final two months were a nightmare for her. She was not afraid of dying but kept asking, “Why does it have to take so long?” She desperately wanted to be given a drug that would end her suffering, but the law denied her any such option. Why should that be so?
Excellent palliative care is available and my mother received the best possible attention in a nursing home where the staff were wonderful, but that didn’t alter the facts that life no longer gave her any pleasure and she wanted it to end. Opponents of the right to choose cite palliative care as an alternative to suicide or assisted dying, as if the mere existence of that care means that there is no need for anyone to choose death. This simply is not true. Even if it were possible for all pain to be controlled by drugs (which does not seem to be the case), there are other things to fear. Becoming helpless, lacking dignity and privacy and waking every morning to a life that no longer holds any joy add up to a nightmare which I certainly don’t want to face. If and when I get to that stage, I want to be able to get help to have a quick and dignified exit at a time and place of my own choosing. I sincerely hope that the law will change soon enough to allow me to do that.
There is also an issue re unfair discrimination here. If my mother had chosen to die when still physically capable of ending her life, without any help, she could have done so. As a seriously disabled person she did not have that option. It is ridiculous that someone fit enough to end his/her own life has an opportunity to do so, while someone who would need assistance can’t.
I thought we were supposed to have stopped discriminating against people with disabilities, but this is an example of some people still having more rights than others
As a young veterinary student witnessing animal suffering I thought to myself if I were in their situation I may want help to end my life. But it was not until around 2007 when I read that Lord Joffe, while working on an Assisted Dying Bill for England and Wales, had sought veterinary opinion on end-of-life issues that I paid more attention. I then came across Friends at the End in a news article about Assisted Dying and instantly felt – here were words of wisdom and reason.
After going to a few meetings to check out who these people were, I met other members from all walks of life and experiences, with different religious beliefs or none and learned more about end-of-life issues from interesting speakers and lively discussions. I joined and have been a member for 10 years.
The biggest motivation for me was listening to the worries of a good friend who was suffering from terminal cancer about what lay ahead for him and believing that he should be allowed assistance to die if he decided he had had enough. He felt it was unfair that I could put a pet to sleep but he couldn’t have help unless he went to Switzerland. And so many pet owners have told me they wish we could be as compassionate to people as we are to our animals by assisting when a person is asking for help. I do believe we should legalise Assisted Dying however complex it is to have a safe and compassionate legal framework.
I was inspired by the conviction of both Friends at the End’s previous Medical Director Dr Libby Wilson and Margo MacDonald and I became more involved campaigning in support of the previous two Scottish Bills. I believe it is important that Friends at the End brings end-of-life issues to the fore and in the past I have organised several meetings in Dunfermline.
This is an important time as we prepare for a third Bill and Friends at the End is in position to be closely involved. I intend to help as much as I can.
Susan’s husband passed away after having been diagnosed with an incurable disease
I don’t even remember how I first found out about Friends at the End, but then I don’t remember too much about that time. You go about your day in a permanent fog.
Living with a terminal diagnosis is a family affair. All our lives were changing and we couldn’t quite understand what was happening. We were fumbling around in the dark with almost no guidance from health professionals. Our world was becoming narrower by the day.
Eighteen months before my husband died he contracted sepsis. This accelerated the disease and we thought he would die in hospital. During a ten week stay there was very little care and no medical expertise that understood the disease never mind manage it.
It was at this point I first contacted Friends at the End. Dr Libby Wilson invited me into her home and spent time listening to my story. I didn’t need sympathy, I needed understanding and clear information to allow us to make choices to continue to protect my husband from a healthcare system that sadly had nothing to offer, yet still expected us to comply with their often ill-informed and uneducated advice.
When I first spoke with Libby I don’t believe my husband was ready to let go. When it was time he communicated clearly to me he had been through enough. A simple thing like not treating an infection was nature’s way.
Friends at the End gave me simple, practical, straightforward information which allowed my children and I to be there and witness my husband’s wonderful enduring spirt leave his broken body and be free of the pain and suffering he had endured for so long. A spirit that is with us every minute of each day.
Nancy’s Story by Ellen
A daughter’s account of her mother’s protracted old age
My mother is still alive, against her will. I have written this account because she has supported assisted dying over many years and I believe that if she were able, she would take the opportunity to publicise her own experience if it could help others and speed up change.
Nancy is over 100. She has required full nursing care for several years and states every day that she does not want to go on.
Her childhood was in the 1920s, spent amidst an extended family which experienced ups and downs through the years. She lived in an attractive area and enjoyed outdoor life. She did well at school, but university was not an option for girls in those days. She worked as a private secretary in business until she joined the armed services in the war.
After the war she returned to civilian employment for a few years, then married and became a housewife and mother. She particularly valued family life and provided a stimulating, loving upbringing for her children.
As a child in the 1950s I remember our family coping with several very old relatives who needed some support in their last years; most died in their 80s and only one made it to 90.
Nancy was driven by a social conscience and she was a very caring person, although not in a touchy/feely way! She showed great commitment to voluntary work and took on several substantial organising roles successfully at a local level. She helped a lot of people over a long period.
After officially retiring, my father undertook part-time work and my parents enjoyed a less pressured lifestyle. But it was at this stage, in her late 70s, when Nancy’s quality of life started to suffer. Instead of a lengthy active retirement – with travel, visiting people, long walks – (which she would have enjoyed, as she was still healthy and fit) my father had a major heart attack, then survived as an invalid for several years. Nancy devoted herself to caring for him, never leaving his side for longer than two hours until his death.
Newly widowed, Nancy needed to focus on looking after herself as an old person. Living alone in a now unsuitable home, she broke her arm and faced other unwelcome problems. In time she had to move to more suitable, but much less appealing, accommodation, with more family support at hand.
She was an old lady in her 80s, aging fairly gracefully on her own in a new area. She was still healthy and compos mentis, so she kept busy, met new people and made herself a useful member of the local community. She drove her car. All of this demonstrated strong character and adaptability. She enjoyed many aspects of life thanks to our increasing support in the background.
As each year passed, more of her independence fell away. Her personal mobility deteriorated. She relied on sticks, a stairlift and hand rails around her home. She supervised a gardener instead of mowing the lawn herself. She had a cleaner whose visits became important, not for getting the vacuum out, but for chatting about the cleaner’s family over coffee. The neighbours started to loom too large in her life as her horizons closed in. She was getting bored. She required much more family intervention, more or less on a daily basis. By her early 90s we were managing a home care regime with a rota of carers and others attending throughout the week, to ensure she was OK, safe and not too socially isolated.
This was hardly satisfactory at best and came to an abrupt end when she had an overnight fall. Her knees had worn out and she was confined to a wheelchair, never able to stand or walk again. After a spell in hospital, she went into a nursing home.
The first months were extremely difficult. From Day One she stated firmly that she did not want to go on and wrote letters to that effect. Her mood and general health dipped and it seemed she might not last long. But she survived, though with a very poor quality of life.
Nancy has, so far, been living in a nursing home for an extremely long seven years, her life sustained by the routine medication administered these days to elderly patients.
She has lost most movement, and requires full intimate care and assistance with everything, except perhaps to turn the page of a book. A lot of long term memories have gone, there is some confusion and her short term memory is poor. She is deaf, and speaks very quietly, which severely limits communication and socialisation. She does not engage with TV or radio. Her eyesight is failing. She tires quickly. She is no longer interested in going out. Medical problems come and go – conditions which make her miserable but aren’t life-threatening. She is often on antibiotics. Several times she has thought, ‘I’m dying’, but has then recovered. She tells us on a daily basis that she doesn’t want to go on, she feels useless. We try to distract her. She loves her family to bits, and often gets emotional.
Some days are better than others, but what kind of a life is this?
Watching someone decline to this unnatural stage, over such a long period, with so much suffering and inevitable loss of dignity, brings sadness and frustration into my life. As a family we have given Nancy a lot of help and support, and she receives excellent care in the nursing home, but it isn’t enough. We just hope she doesn’t have much longer to wait.
Nancy’s experience isn’t unique. It could happen to me, it could happen to someone in your family. For an old person without family support the situation could be even worse. Isn’t it time that as a society, we do better for people at the end of their lives who are no longer able to help themselves?