Why can’t we lift our game?
Don’t complicate things. Improving the quality of the end of life care is easier done than said, says leading UK end of life care expert.
Above: Leading UK innovator and expert on end of life care, Charles Leadbeater.
By Yasmin Noone
UK end of life care expert, Charles Leadbeater, is asking why? Why do most countries around the world, many poorer than Australia, manage to boast an end of life care sector that enables people to die the way they want, where they want, surrounded by the people they love?
Why do older people in Australia, the UK and other western countries die ‘bad deaths’ in a cold hospital, sometimes alone, when the resources are available to fix the problems associated with poor end of life care and dying environments?
“There is such a mismatch between the way that people live towards the end of their life, the way that people have lived throughout their life and how they want to die,” Mr Leadbeater said.
Mr Leadbeater therefore challenges anyone who proposes the notion that improving end of life care in Australia is easier said than done.
“When you look around, there are all the ingredients of what is required but somehow [improvement is not happening].
“…But it’s easier done than said.
“[Improving end of life care] is easier to do than people give it credit for but it’s made to seem complicated.
“None of it is rocket science.”
Mr Leadbeater, a leading authority on innovation and creativity and the co-author of the UK report Dying for Change, will visit Sydney to lead a debate about end of life care in Australia on Monday 13 June.
At the event, organised by The Groundswell Project, he will discuss the opportunities and barriers to social innovation in end of life care.
In an exclusive pre-event interview with AAA, Mr Leadbeater reasoned that the mismatch between end of life care wishes and realities could be due to the fact that “in the west, the medical frame of reference is so powerful”, as are doctors and other medical professionals in maintaining the current status quo.
“It’s not like they want to be dealing with end of life issues [in hospital] but its like we are all sort of stuck.”
The lack of discussion surrounding issues of death and dying also contribute to the problem.
“It’s very difficult to design services to improve end of life care unless you can get people to talk about [death, dying] and what they want.
“It’s difficult to then act on it unless you get some capacity [to change]…Then you must follow what people want and design services around that rather than putting people in institutions.”
Mr Leadbeater, a leading authority on innovation and creativity, has been rated by GQ magazine as one of the 30 most powerful men in the world.
A journalist, a consultant an author and an innovator, Mr Leadbeater’s passions expanded to include end of life care after the death of his parents.
His mother (86) and father (92) died only six weeks apart, providing him with direct experience of two very different deaths.
While his father died in a hospital – in an ‘unpleasant’ physical environment – his mother died in a nursing home and was in charge of her own death. The contrast between the two experiences of death was what pushed Mr Leadbeater to campaign for an improvement in end of life care, nationwide and internationally.
“In the UK at the moment, we have services that are quite dysfunctional and distressing. We should develop services that give more people the chance to live and die well.
“We can’t take away the pain and grief of dying but we can help people to die in much better conditions [than what happens now].”
The Sydney event (at153 Dowling Street, Woolloomooloo) will also include the release of the research report Bringing our Dying Home: Creating Community at end of life – a collaboration between the University of Western Sydney, Cancer Council NSW and HOME Hospice.
For more information about the event, please click here.