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Is Fear of Death Killing Compassion for Older People?

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"In this case, ignorance is not bliss. With death, ignorance is fear."
Caitlin Doughty - The Order of the Good Death

The UK Commission on Improving Dignity in Care chose the 29th of February to release their draft report improving care for the elderly. When splashed across the media nuance was lost to the big message - we're not compassionate enough.

Though it was NHS staff that were labelled as lacking compassion there were a lot of us who felt, deep down, that we might not care enough too. If we did how would we allow incidents like some of those documented by the Health Ombudsman continue to occur.

In their migraine-inducing report one learns about Mrs. H who was transferred from hospital to a care home and was found with numerous injuries, soaked with urine and dressed in clothing that did not belong to her which was held up with large paper clips. And about how staff at Ealing Hospital left Mr. J forgotten in a waiting room while his wife died in the ward nearby. And about how staff at Oxford Radcliffe Hospital turned off Mr. C's life support despite his family's request that they wait until they got there.

It's hard to imagine that such painful situations would be allowed to occur and reoccur if they concerned children. It is easy to blame medical staff for this but there is evidence of a much bigger problem. The European Social Survey shows Britain as having one of the worst records in Europe on age discrimination. Age UK says "Undignified care of older people does not happen in a vacuum; it is rooted in the discrimination and neglect evident towards older people in British society."

One angle on this subject that doesn't get discussed enough is death. But yet the people profiled by the Health Ombudsman were dying. 9 out of 10 of them didn't live to see the report get published. Things can often go pear-shaped when people are dying as shown by the fact that 54% of the complaints received by the the Healthcare Commission were 'bereavement related'.

This makes sense because many of us don't do dying very well. We don't even like to talk about it. And when we see people who are dying we can freak out, a bit or a lot. It doesn't take anything else to cause incidents like Mrs. H's.

The theory is that someone who is more OK about death would be better at looking after a dying person than someone that who is very scared. This makes sense, but the interesting thing is the amount of evidence for this. G. G. Eakes found that "Nursing staff with high levels of death anxiety had significantly more negative attitudes toward the elderly than nursing staff with low levels." Vickio and Cavanaugh found "that a connection between old age and death may underlie the relationship between death anxiety and attitudes toward elderly adults." DePaola, Neimeyer, Lupfer and Fiedler's found that "increasing levels of death concern were associated with greater anxiety toward ageing."

If attitudes towards death are a significant problem then what should we do about them? The good news is that in many areas we've never been better - another reason why it is wrong to yearn for the good old days of matron. For example, the modern Hospice movement is a magnificent British gift to the world. Britain is also a world leader in natural burial thanks in a large part to two decades of effort by the Natural Death Centre. There is always compelling off-centre debate on the Good Funeral Guide blog led by Charles Cowling. The GFG has the courage to fire sharp barbs at the big funeral chains and is clever enough to lead on big tasks like redefining ritual for non-religious funerals. There are many fantastic undertakers and celebrants and lots of great stuff is happening, like my personal project Death Café and the brilliant Order of the Good Death.

Framing this debate as being about how we care for the elderly makes nurses, care homes and hospitals the things we need to change. No one would deny that changes to date haven't been entirely successful. Framing this debate as being about how we die would bring the focus back to where it needs to be - on the dying person and their family with nurses, care homes and hospitals there to provide compassionate support.

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Dignity in Care network

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Dignity in Care Southern Cross Healthcare case study - YouTube