Demos is an independent think-tank focused on power and politics. It develops and spread ideas to give people more power over their own lives. Its vision is of a democracy of powerful citizens, with an equal stake in society.
Demos’s challenge is regard to dying is ‘to help people to achieve what is most important to them at the end of life. That will require the creation of a network of health and social supports so that people can die at and closer to home, with the support of their family and friends, as well as professionals’.
The pamphlet, Dying for Change, argues for improvements to existing services: making end of life advance care plans the norm; training more in the medical profession in palliative care; and more greatly integrating the care services provided by the public, private and voluntary sectors. It also suggests radical innovations: a new infrastructure of home hospices, the creation of a compassionate care benefit and a properly trained volunteer support network providing palliative care – a perfect opportunity for the Big Society.
The challenge is to help people to achieve what is most important to them at the end of life. Dying for Change describes how that challenge can be overcome.
The following is an excerpt from the preface to it…..
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 well prepared 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 with him at home. So he was despatched to hospital, even though it was unable to do much for him.
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.
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. 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, November 2010
To buy or download the pamphlet, Dying for Change, go to https://www.demos.co.uk/project/dying-for-change/