Purposeful, positive and powerful – a role for hospitals in providing end of life care
In this special blog to mark #GoodDeathWeek, Dr Deans Buchanan, Consultant in Palliative Medicine, NHS Tayside, questions the assumption some people have that hospital is a “bad” place to die…
Do I want to die in hospital?
The honest answer is, “no, not really”. It’s the same answer many people give. Surveys show as many as 70% of people would prefer to die at home.
But... I don’t think physical location is my top priority at the end of life and the reality is that I do have a higher chance of dying in hospital than being in any other setting at the end of my life. I’m not alone in this. When those who are facing serious or life threatening illness are asked about their priorities then: dignity, respect, comfort, being involved in decisions, personhood, feeling safe and environment are all prominent compared to location itself.
It is also true to say that my ability to “choose” where I die may be influenced by a whole host of factors beyond my control. I may be working through situations and considering options about things that I would never have chosen at all. That's why responses to the question “where would you want to be when you die?” alter according to whether those asked are healthy and answering hypothetically or living with advanced illness. Preferences about location can also change over the course of illness.
Hospitals serve the communities they are located in. Suffering, healing, human moments in the midst of mortal striving have always been part of the hospital landscape:
“A hospital is only a building until you hear the slate hooves of dreams galloping on its roof. You listen then and know that here is no mere pile of stone and precisely cut timber but an inner space full of pain and relief. Such a place invites mankind to heroism.”
Richard Selzer – Taking The World In For Repairs, 1987
Quality of mortality is part of the core business of health and social care. Care from “cradle to grave” was envisaged from the outset of the NHS and we know that in Scotland, on any given day, approximately 10% of those who are admitted to hospital as an emergency will not go home but will live their last days there. We also know that uncertainty in modern illnesses underpins the need for a reactive component to care. Even as we try to plan ahead for our last days, months and years we do so without really knowing what that will entail. Death planning has the same potential for change as birth planning does...
Given these realities, then, what positive and purposeful planning is there to support our hospitals in providing end of life care? There is an evident gap when it comes to this.
When healthy people are asked where they would like to die, home is top of the list, hospice is next, then hospital, and last of all, care homes. Yet, the trend in the UK is moving away from death in hospital towards death in a care home setting, in the context of a policy that emphasises choice. To me, this dissonance between reality and policy is hard to follow. When hospital avoidance seems more important than the actual life experience of those dying then these dissonant notes can end up be played out in the very place care and refuge has been sought.
“Hospital” derives from the same Latin root as hospice and hospitality - hospes - originally meaning “stranger” or “guest” and “patient” from the word patior meaning “to suffer”. Hospitals were first described as places where strangers who suffer could be welcomed.
An approach that focuses on avoiding hospital and that considers admissions near the end of life as inappropriate moves us away from the original purpose of a hospital. It makes those who would choose hospital, those for whom community care reaches a limit, or those who have illnesses unfolding with uncertainty become unwelcome strangers who suffer. It under-serves the care and compassion that those working in hospitals demonstrate day in and day out in Scotland when looking after those living their last days in hospital.
Are hospitals perfect? – No. Can a death in hospital be “good”? - Yes. The Scottish Care Opinion data shows this to be true, as do my own experiences working in acute palliative care, and the research backs it up. The Office for National Statistics Voices report describes that almost three-quarters (74%) of respondents whose relative died in hospital believed that their relative died in the “right” place.
The components of a good death in hospital look remarkably similar to a concept of “home” that isn’t tethered to the bricks and mortar of a “house”. It is at its most powerful when it is purposeful, positive and person-centred. When staff recognise there is one chance to get it right and focus is sharpened to attend to need, then a death in hospital can be as “good” as a death in any other setting.
This view does not undermine the efforts to improve end of life experience outside of hospitals. An effective hospital admission near the end of life may be the very action required to allow someone to achieve a wish to be at home in their last months, weeks or days. They should act in concert not competition.
We have a great opportunity in Scotland to stand out and to lead on this. We have a chance to recognise that hospitals are also just buildings where people live, work, die, laugh, love, cry, relate, face uncertainty, find community, sink under and rise above. In short, hospitals are part of human communities and can have a positive, purposeful and powerful role to play to help us all “end well”.
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