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What should end-of-life care look like?

By Paul Russell - posted Wednesday, 27 March 2013


I was asked recently by a journalist what my idea of a good death would be. I quipped: One that's a long ways off!

In my work I think a great deal about death and dying. Some might think this macabre and perhaps even 'unhealthy', but as a colleague recently said, 'It's really the most life affirming thing!' I think he's on to something.

We all know, as we get older, that we need to think of things like our Last Will and Testament, what we should be doing to prepare for retirement, how we talk to our children about what we think we might want and might not want in terms of care and support etc. and whether or not we make some kind of formal advance care directive should we find ourselves challenged by a difficult diagnosis. But how many of us actually make such plans or have these kind of conversations?

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In the west we don't deal with death and dying very well at all, in my experience, and sometimes we recoil when we observe some of the cultural practices around death observed in other places. Yet, strange as some cultural practices may well seem, at the very least they create an acceptance of death and a place in those societies where it is safe and even wholesome to express grief and loss in a public way.

This public expression, as with cultural expressions generally, has an educative effect. It makes death part of life. That may be a cliche, but, when you think about how we in the 'modern' world deal with death and 'death talk' it does have some distinct benefits.

That's why any initiatives to assist people to tackle such hard issues should be welcome. I'm not now talking about those who spruik for assisted suicide or euthanasia. Even though those debates can be illuminating, there are subtle and not-so subtle messages there that tend to amplify fear and uncertainty.. I'm thinking more of initiatives such as the promotion of advanced care directives and developing health policies that embrace early discussions about end-of-life care in medical, hospice and aged care settings.

Two recent articles from the US highlight both positive and negative approaches to the public discourse. The elephant in the room - rising health costs - seems to be the pivot point.

The LA Times reports on a UCLA study looking into the effect of early discussion about what patients' really want and the effect on their well being from treating them accordingly. The story opens by claiming, unsurprisingly I would have thought, that such patients are 'happier patients who are in less pain and who use fewer healthcare dollars'.

Dr. Jonathan Bergman, a Robert Wood Johnson clinical scholar at UCLA, said, "You can improve care while reducing costs by making sure that everything you do is centered on what the patients want, what his or her specific goals are and tailor a treatment plan to ensure we provide the specific care he or she wants."

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Bergman et al observed that, 'People who are dying often receive care that is poorly coordinated and not in line with the patient's values or goals.That should change. '

'Studies have shown that when a patient's desires are taken into account, death is less likely to occur in an intensive care unit, physical distress is reduced, and death comes no sooner,' they wrote.

This is good news: patient-centred improvement in care leads to reduced costs. When the patient's well-being is the centre of the conversation and their legitimate needs and wants are being heard and heeded, the bean-counters in the health bureaucracies can also breath a collective sigh of relief!

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This article was first published on No Euthanasia.



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About the Author

Paul Russell is the Director of HOPE: preventing euthanasia & assisted suicide www.noeuthanasia.org.au.


Paul is also Vice Chair of the International Euthanasia Prevention Coalition

Other articles by this Author

All articles by Paul Russell

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