Posted by Jon Underwood, founder of the Death Café project

“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 drop their bombshell in the form of a draft report on how to improve care for the elderly. Their recommendations were dry and sensible but the Commission used their moment in the spotlight to prod at a shadowy part of our national psyche. When splashed across the media nuance was lost to the big message – we’re not compassionate enough, we need to care more. Their implication was clearly that we don’t care 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 those that set this Commission in motion continue to occur. Some of these were documented by the Health Ombudsman in a migraine inducing report, the kind that you have to steel yourself to open.

And when you do you learn of Mr. D whose family arrived at hospital on the day he was due to be go home and found he had been waiting for several hours. He was in pain, desperately needed the loo and couldn’t ask for help because,  he was so dehydrated. His daughter said that ‘his tongue was like a piece of dried leather’. The emergency button had been placed beyond his reach, his drip had been removed and the bag of fluid had fallen and had leaked all over the floor making his feet wet. When the family asked for help to put Mr D on the commode they reported that he had ‘squealed like a piglet’ with pain. Truly a  horrific experience for any family.  His daughter said that ‘From the moment cancer was diagnosed my dad was completely ignored. It was as if he didn’t exist – he was an old man and was dying.’

The report continues in a totally dreadful way. You read about Mrs. H who was transferred from hospital to a care home. When she arrived the Manager found she had numerous injuries, was soaked with urine and was dressed in clothing that did not belong to her and which was held up with large paper clips. Or you read about how staff at Ealing Hospital left Mr. J forgotten in a waiting room, waiting to be told he could come in now,  while his wife died in the ward nearby. Or 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. 

Can you imagine equivalently painful situations would be allowed to occur and reoccur if they concerned children rather than older people? Its convenient to blame medical staff but there is evidence of a much more pervasive problem. According to the European Social Survey Britain has one of the worst records in Europe on age discrimination. Age UK, our loudest voice on behalf of older people, 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. Age discrimination is the most common form of discrimination in the UK.” 

Abuse and neglect is a crime. Horrible incidents like the ones described above are much more likely to happen to older people. These things together, I firmly believe, constitute hate crime. In the face of them it’s hard not to feel we have some questions to answer, like why these things happen and what can we do about it.

The explosive reaction following the publication of the Dignity in Care commission report was unsurprising because they almost dared to point the finger of blame at the general public. The tone of this debate is shrill and pervaded with unease. Commentators seem happy to skip the bit about what the problem actually is and focus on what should be done about it, and about this there is almost a complete lack of clarity and agreement. 

Some suggest banning the use of the word ‘dear’ to describe older people. Many say that nurses pay and conditions do not allow them mental space to be compassionate and when they are improved standards will improve too. Others suggest that NHS privatisation will only make things worse (a view one suspects they had before the report was published). Esther Rantzen is proposing Silverline, a 24-hour phone service where older people or their families can blow the whistle on cruelty or neglect. Virtually no one suggests that the Commission’s own mild and unthrilling recommendations will amount to much more than a cursory step in the right direction.

The most entertaining commentary I’ve seen was a teeth-grindingly awful piece by Allison Pearson in the Telegraph called ‘Listen darling you can’t legislate for compassion.’  Pearson thinks that “Caring is a vocation, empathy a gift”, conveniently letting herself off from ever having to develop any compassion herself. She continues “Hospitals used to know as much, back when girls with big hearts and a small clutch of CSEs were recruited to do what they did instinctively: fetch a flannel and basin to give someone a nice wash, stroke a shaking, ancient hand, share a joke over a bedpan.” Ah! The harking for the mythical past! So comforting to invoke because it didn’t exist so there is no chance of us ever getting back to it. 

Pearson is wrong on so many levels but the idea that things were better then is just bollocks. This is because the issue here isn’t about reintroducing matron or even about older people. It’s about death. The people profiled by the Health Omdudman were dying. 9 out of 10 of them didn’t live to see the report get published. Things can often go to shit when people are dying and this is where so many problems lie. Key fact: 54% of the complaints that the Healthcare Commission receives are ‘bereavement related’.

It 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, and sometimes not do the best things. It doesn’t take anything else to cause incidents like Mr. D’s. 

So the flipside of this, is that someone who is more OK about death (and all that is all associated with it) should be better at looking after a dying person than someone that who is scared. This makes sense and there is a surprising amount of evidence of this point. Its not just nurses that are afraid of death – count me in and probably you too – but they are the ones who’ve mainly been studied as far as I can tell. G. G. Eakes studied the relationship between death anxiety and attitudes towards the elderly amongst 159 nursing staff.  The conclusion was clear: “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 the results of their study of 133 nurses “indicate 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 comparison of 145 nurses with a control group found similarly that “increasing levels of death concern were associated with greater anxiety toward ageing, especially in the nursing home sample, and nursing personnel displayed significantly fewer positive attitudes toward the elderly than did controls.”

If our problem is fear of death then what should we do about it? The good news is that in many areas we’ve never been better at it  – another reason that Allison Pearson from the Telegraph 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 through the pioneering work of Dame Cicely Saunders. It is noteworthy that the word ‘hospice’ is completely absent from the Health Ombudman’s report. Britain is also a world leader in natural burial thanks in large part to two decades of effort by the Natural Death Centre. There is always compelling off-centre debate on this blog. 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

Saying that this is a debate 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. Saying this is a debate 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.

[Death Café works with anyone who wants to talk about death. This includes those who are dying, those that support them and everyone else. Please do get in touch if you’re minded to.]