Wednesday, June 15, 2011

Interlude: It's not only about Hospital care of the Dying

On Monday I spent an overcast Sydney afternoon in a room with over 50 people from diverse backgrounds considering Innovation and Community based care of the dying.  It reminded me that I need to clarify my view here.  In my pragmatic way I want to improve Hospital based care of the dying by working towards a cultural and systemic change (the Dying Friendly Hospital).  Regardless of that goal Australian society faces the challenge of how to improve community based care capacity.  To do this both the heath workforce and the carer and volunteer community need to explore new and better ways of growing support and capacity for end of life care.

The guest speaker was Charles Leadbeater, an innovative Englishman at the helm of the UK "Dying for Change" report.  At the heart of this report is the position that most people would prefer to die at home, but most don't, and there needs to be new ways of looking at how to change this.

There was much wisdom, experience and enthusiasm in the room which I valued.  Consequently I feel like the black sheep in looking at the problems of community based care, but we all have our roles to play.

It is absolutely desirable to support people to die at home, yet I heard other, unintended, messages from some on the day.  The first message was "dying at home good: dying elsewhere bad".  Anyone who has worked in palliative care services knows that dying at home is simply not a viable option where the caring resources are not available or accessible.  Isolated frail carers, people living alone, carers with their own collection of chronic (or even terminal) illnesses, people who have moved in retirement and have no family or established community links locally, people whose care needs are 24/7 through the dying period.  There have been recent studies that show that when you ask well persons where they want to die they say "home", but when you ask people who have experienced months or years of progressively debilitating illness many of them say "hospital" because of their knowledge of their care burden.  I also noted that while Charles was clearly observing that acute hospitals in the UK are generally not suitable environments for end of life care, he had high praise for UK Hospices.  

The second interesting unintended message was "a person has the right to die at home if they want to".  Many a community palliative care worker has had the experience of a carer agreeing in the presence of the (soon to be) dying person to the idea of dying at home, then walking to the car with the nurse and expressing that they do not want their loved one to die in the house.  There seems to be an implicit assumption among those that believe people should die at home if they want to that the carer / family will also want this, which is simply not universally true.  Preferred place of care is a complex and multifactorial concept because we live in relationships and in an uneven society.

I strongly support people dying at home where that is a shared goal of the carer/family.  I strongly support dying at home where the caring resources can be brought together.  I believe that we do need to look at all the innovative ways we can raise the dying at home rate across Australia.  I believe that end of life care is a social and community concern and does not "belong" to health professionals.  I refuse, however, to accept that a death not at home is "wrong" or has to be a bad experience.  If Australia was to increase the home death rate by 50% the majority of deaths would still occur in hospitals.  We need Dying Friendly Hospitals, both now and into the foreseeable future.

No comments:

Post a Comment