Dying for Change

April 2, 2011

By Charles Leadbeater

Recently I ran across a pamphlet from a British organization called “Dying for Change”. Sponsored by a political thinktank called Demos, “Dying for Change” hopes to help transform care of the dying in Britain. I asked its authors, Charles Leadbeater and Jake Garber, for permission to share the preface here. If you would like to read more about “Dying for Change” just follow the link. Thanks Jake and Charles. With all good thoughts for your courage and vision.
– Jeanne Denney (editor)

Bill died at 4am on 18 August 2010, the morning of his 86th birthday, in Ward 3 of Airedale General Hospital in north Yorkshire. His final view in life would have been the stained polystyrene tiles above his bed. The drab room in which he died provided a measure of privacy but little else. The walls were covered with a fading washable wallpaper of indeterminate colour. The room was a workplace for nurses and doctors rather than somewhere someone would choose to reflect on their life and be close to his family in his final days. Bill’s wife Olive would struggle past chairs, push away stands and tubes, and stretch across the metal guards surrounding his bed to kiss him. The room was designed for medical procedures, not for kissing. The ward’s ‘lounge’ was barely worthy of the name. Lit with fluorescent strip lights, its comforts were a jumble of old armchairs, an ageing television and a public payphone.

It was not just the room that made Bill’s dying so impersonal but the ward’s procedures. His relatives struggled to find a telephone number for the senior medics serving on the ward, let alone to talk to them. When Bill’s family met his consultant for the first time it was after his death and she revealed that she talked to patients’ families only when they pestered her. The nurses on Ward 3 were caring and hard working. Yet establishing a relationship with them was impossible: with every shift came a different nurse. Often it seemed as if no one knew what was wrong with Bill. But that might be because no one was comfortable talking about the fact he was dying.

As his family acknowledge, it would be too easy to blame everything on an unfeeling system. His family could not have cared for Bill at home. His wife was 92 and frail. His sons, married with families, were not local. None of them were wellprepared for a direct discussion with Bill about the fact that he seemed to be dying. Everyone had an interest in skirting around the subject. When Bill was asked directly whether he wanted to carry on living, he said he did not see any other option: he did not want to give up on life. The medical profession took its cue from that desire to eke out the last moments of life. Seemingly fairly fit and well, although anxious and at times depressed, Bill had been admitted to hospital in February with an enlarged prostate. An attempt to insert a catheter was successful and he was discharged but just before a weekend, in a rush. When he arrived, home support from social services and district nurses took days to come. Lying in his bed he quickly developed a pressure sore. After another visit to hospital for a procedure to open his urinary tract, the pressure sores grew. In common with many people his age, Bill had other conditions, among them a weak heart. By the time he was admitted to hospital for the final time, in July, the combination of these conditions and the infection caused by pressure sores were killing him. The district nurses decided they could not cope withhim at home. So he was despatched to hospital, even though it was unable to do much for him.

The sad truth

Most of us will die as Bill did, in old age, with a combination of conditions, in hospital. Some hospitals may provide sensitive, high quality care. Others will resemble impersonal waiting rooms, inhabited by people poised uncertainly between life and death. It was not that the staff on Ward 3 did not want to do a good job. They were part of a system that seemed designed by and for the doctors rather than the patients and their families. Too often hospitals neglect the social, psychological and spiritual aspects of dying, which are vital to dying a good death. That social shortfall is why hospitals are rarely the best places in which to die. Bill’s doctors had an ethical commitment to try to mend and heal him. Yet he could not be healed and no one could bring themselves to open a conversation about the fact that he was going to die. Bill’s death was not a tragedy. He lived a long, happy and healthy life. Some of that life he owed to interventions by the medical profession: operations to fix his knees and sight. Without modern medicine he would not have been alive at the age of 86. Yet the medical profession that had extended his life was unable to provide him with a good way to die.

Another way to go….

Once Bill had died it did not take his wife long to work out she wanted to die as well because life without him would hold little for her. Olive did not want to sit alone at home or be parked in a nursing home. She was 92; she’d had enough. Yet before Bill’s funeral could be organised Olive had a thrombosis and ended up in Bradford Royal Infirmary. She went on hunger strike. For weeks she lived on a diet of Ribena. She kept asking the nurses for ‘one big pill’ to see her off. The nursing staff cared for her professionally but also sensitively. Gently they tried to talk her round. Finally her original condition was cured and they let her go to a nursing home a stone’s throw from her home – heavy chintz and pine furniture, with lovely views down the Yorkshire Dales. Olive realised that if she stopped taking the anti-bloodclotting drugs that were keeping her alive, she could bring her life to a close. She did not commit suicide but she knew that she was ending her life. The last time her youngest son saw her she ushered him out of the room with a wave and a knowing nod. She had things to do.

In the last weeks of her life Olive was on a mission to find her way around a system that was determined to keep her alive when she was equally determined to die. Somehow, at the age of 92, despite being frail, weak and losing her memory, she managed to orchestrate her own death, which came with a sense of completion and achievement, dignity and grace, agency and control. Hers was a good death. Yet it felt like an act of civil disobedience.

Olive and Bill were cremated together, their ashes mixed and scattered across their favourite beaches on the Isle of Arran. This pamphlet was inspired by these two experiences, eight weeks apart, in the autumn of 2010: my parents’ deaths. My mother’s was a good death: she lived a long life; she was not in pain; she was surrounded by friends and family; she was in control and so she died with dignity. My father’s death felt like a bad death. He was not in pain but nor was he in control; his death lacked dignity and there was limited scope for relationships with friends and family in the final weeks. The hospital and its systems were not solely responsible for this but they played a big part. Far too many of us, perhaps hundreds of thousands each year, will die deaths like Bill’s, in places like Ward 3. Far too few will die deaths like Olive’s, supported, dignified and in control, close to home and family. This report is about why and how we should change that to give more people a chance of dying a modern, good death.

Charles Leadbeater is a leading authority on innovation and creativity. He has advised companies, cities and governments around the world on innovation strategy and drawn on that experience in writing his latest book We-think: the power of mass creativity.


5 Responses to “Dying for Change”

  1. Mark Brady said

    This described condition was one of the reasons some retired Microsofties established Enso House here on Whidbey Island. http://www.ensohouse.org

  2. Dorothy R. Mangini, LCSW said

    Very interesting, insightfull piece. However, problem is we are not in control, this is a false belief. Having control over one’s death is viewed here as virtuous. Real courage is letting go.

    • What a great debate to begin here Dorothy. I agree. And…my own experience is that there is a way that we need to the directors of our own play at the same time. Directing perhaps by some kind of inner will our most intimate journey and surrendering at the same time. How do we handle such complexity?

      Thanks for your comment

  3. Laurie said

    “Being in control”….sometimes we can be.
    Sometime ago, I received a diagnosis that death was imminent. While I am here to say that “imminent” turned around…is not the point. The point is, I got to plan my death as I would want it and I knew it and I embraced it. Saying meaningful goodbyes, and sharing “I love you” with those whom I love…was cathartic. More than participating..I did what I did exactly as I wanted to do. The experience was a gift that cannot be duplicated or easily related. But, I learned from the experience exactly what would bring me peace and comfort when my time does present itself. I am at peace with dying. I have since succumbed to all the “platitudes” we have all heard. Because, that day they became real. I remind my family bi-annually of my wishes!! With this in place, I have absolutely no qualms about dying…and I know in my very core, that if I were to be in a similar situation again – no sweat! I am ok I learned that day – as I made my calls, to say everything I want to say and to say it each day! (the last words my family hears each day is I LOVE YOU). I make every call that is on my to do list that day. If there is no tomorrow…who did I ignore? I leave nothing to do tomorrow that I need to do today (I don’t want anyone cleaning up my personal mess), I am determined to do at east one Mitzvah each day, making each day count. I have a new appreciation for life and a bigger one for Death. I think many people would fear death less, if they knew in their inner core…how their death would play out. Barring unforeseen circumstances – producing, directing and starring in your own production can bring more than a modicum of calm and comfort to the soul and spirit.

    • Hi Laurie,

      Thanks so much for this confirmation of the “deathwork” that can be so meaningful in our lives. I would love to share your comments with my students who are doing their own death preparations and contemplation. It is a truly liberating activity. I am so glad that you have this brilliant view and wish you continued support in your healing journey. By the way, you might be interested in the “Teaching Death to Youth column” where I reflect on teaching this to college students. All the best.

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