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.]
Jon you are such a star – completely with you in your focus on the person who is dying and the support that they and their family deserve to have, as a right.
One day, maybe.
Until then, those of us who care so passionately about it absolutely have to keep pushing and fighting against the status quo.
Thank you, Fran; and what lovely pictures – aren’t old people just so, so beautiful! I can’t wait to see that in the mirror.
Thank you, Jon. I haven’t time at the moment to reply to your main points with any sense of purpose, but I do have to take issue with your dismissal of the ‘old fashioned’, matron led school of nursing and care.
Having spent what amounts to months of my life over the past 7 years sitting at my father’s hospital bedside in various locations, I can tell you that the most depressing, blood-boiling incidents of neglect and apathy which I have witnessed have been where there has been an apparent complete lack of leadership and professional integrity on both general an geriatric wards. The best care by far has come where there has been a matron, either male or female, who directs the care being given by staff, who comes in like a whirlwind and prioritises what needs to be done, and who is watching out for those who cannot watch out for themselves.
And please don’t say that this only happens to older people. It doesn’t. Having also sat on a children’s ward with my son during a number of long hospital stays, I can also tell you that the failings are there too. And many children, some very young, are left by their parents for long periods of time to fend for themselves in hospital. They suffer too.
Hi sweetpea,
Thanks for your response. I’m sure you’re right about the importance of someone with leadership and professional integrity like a matron. What we may possibly agree on is that someone of this type might not be, in themselves, the single solution.
I feel that a matron is often portrayed as the person who makes sure everything is as good as it can be in the face of chaos. But isn’t it unrealistic to expect this to this rely on one person? My instinct is that the way we care for dying people needs a more significant reorientation and that people who argue for matron alone can sometimes fail to acknowledge this.
Not saying you don’t agree with this too.
Also, I didn’t mean to imply that this doesn’t happen to other people, including children. I guess my intention was to suggest that reflecting on our attitudes to death might be useful when we consider how we care for older people.
Jon
Yes, Jon, I agree that this will not be magically solved by the arrival of an army of Hattie Jacques clones. Far from it. The causes are much more subtle and interwoven, but what I longed for in the middle of chaos was just such a person, to take charge and give the whole enterprise some sense of purpose, and, occasionally they did.
To see a capable matron come on duty is a wonderful thing – the whole atmosphere on a ward can change between shifts. Chatting round the work station, receiving any requests for assistance with a ‘computer says no’ response, leaving food and drink out of the reach of the vulnerable patient or while they are asleep – all the while efficiently marking their notes that nothing has been consumed – is all reduced by the arrival of someone who is actually managing the overall tasks. It is asking a lot from one person, but then it always was, and there were people who loved that responsibility, who thrived on the challenges and professional recognition.
I’m working with a family at the moment of a woman who was just exactly that kind of matron, and who has died at the age of 75. It’s interesting to read her reflections on the care which she herself received from the hospital where she served (and that’s a word she wasn’t embarrassed to use). I think it broke her heart to see her profession brought so low, a woman who really understood how to care for people, not in a sentimental way, but by discipline (another unfashionable word) and a pride in professional standards.
I don’t want to get caught up on this one issue, because, as you say, this needs consideration on many fronts – how and why we are training health care professionals in the way we do, the overall culture of technical proficiency to the detriment of empathy and understanding, the understaffing and administrative demands which demoralise staff…
But the one thing which distressed me most in some of the nursing staff with whom I came across on those general and geriatric wards was their lack of empathy and human understanding. It was chilling – a sort of ‘couldn’t care less’ blank stare or brick-walling. Born of what, I’m not sure – self protection or just lack of common humanity, I don’t know. But sometimes I felt like I was leaving my dad in a shark tank.
Hi, Jon.
Thankyou so much for this brilliant piece. I have been thinking since yesterday about how best to respond to it.
First of all, I agree totally about the treatment of old people in hospital having seen it myself with my grandmother (admittedly over 10 years ago now) who was fortunate enough to have three daughters visiting her regularly in hospital. For this reason and this reason only she got to eat. Her food was left by her bed, and, unless one of us was around, was removed, untouched half an hour later as she could not sit up unaided. She was 93. I am not so sure that the reason for this is an endemic fear of death, however. I’m not sure what it is. Perhaps nothing more than thoughtlessness, or perhaps a feeling of hopelessness or powerlessness because the situation could not be ‘fixed’ which is what the medical profession perceives its role to be. I do agree entirely that it is important to move beyond the point where the medical profession perceives each and every death as a failure.
I certainly agree about the importance of talking about death more regularly in everyday society…I have certainly found it helpful. I have heard from various sources that people do not like talking about death and will shy away from it wherever they can….this is certainly not my experience. I have been amazed over the last few months to notice that almost everyone we come into contact with launches into a dicussion of death with an enthuiasm which looks like relief. We get it from people who come in to sell us insurance, people who come in to collect the clinical waste, people who come in to sell us advertising. Even when we meet people socially and they ask what we do for a living, as soon as we say we own a funeral company they launch into a conversation about death and funerals…good and bad ones they have been to…what they want for themselves….and they do it with a sense of almost relief…as if we have ‘given them permission’ to talk. So to me, it seems almost that the issue is not that people don’t want to talk, but that they think they shouldn’t because there is an unwritten rule that you shouldn’t and that it what needs to change. Blogs like this help, but as with many other things tend to be ‘preaching to the converted’. So how do we start a more fundamental change? I think your Death Cafes are a brilliant start as are national events such as the recet one in Southwark….perhaps we just need to keep the pressure up.
Perhaps I should explain that I am one of those people who has a fear of death that verges on being a phobia. This has, perhaps, been the major driving force in my life sice I was about 16…influencing almost everything I do (imagine my surprise when the universe twisted in such a way that I find myself co-director of a funeral home…talk about confronting your fears!) What I can say with absolute certainty is that not talking about it and trying not to think about it absolutely does not work. In fact it makes it much worse. A lot worse.
I am not sure that my fear leads to a lack of compassion though (I certainly hope not)which is why I am not sure that that is the route of the problem. I think it may be a deeper malaise affecting society as a whole and not just the NHS, or the care of the elderly. Of course that doesn’t help with what to do about it!!
Hi Jenny,
Thanks for your lovely reply which I’m enjoying thinking about.
I hear you that pointing to the fear of death as a root cause here might be misleading and I’m very much open to the possibility of being wrong about this. And indeed I’m sure you’re in a position to talk about this much more authoritatively than me.
I was interesting to hear you talk about “a feeling of hopelessness or powerlessness because the situation could not be ‘fixed’ which is what the medical profession perceives its role to be. I do agree entirely that it is important to move beyond the point where the medical profession perceives each and every death as a failure.” I guess that to me this feels to me if not fear of death then certainly or having a strange attitude or unhelpful towards death.
Its great that you have the opportunity to talk about death to people and like you, at the Death Cafes we have found a real thirst to talk about this subject. The idea of the ‘unwritten rule’ you speak of is really interesting and yes we’re all trying to change this. Lets keep the pressure up I say!
And I agree again about preaching to the converted, absolutely. There is so much energy, passion and intelligence on the GFG and beyond that society could really benefit more from in my opinion. I think ‘we’, as a sector are really pretty new still though things seem to be changing really quickly. I hope a tipping point in public attitudes towards death is coming and I am honoured to be part of the movement towards this. There are possibly a few things we need to achieve this, chief amongst which I would say is confidence.
Your willingness to face your own fear of death is inspiring as i totally agree with you that denial makes things worse. Maybe its time to re-write the unwritten rule. Difficult to re-write something unwritten though!
Jon
@ sweetpea. You write so eloquently about matrons, thank you. I have so much admiration for someone with the skills, dedication and human qualities you mention. I’ve had the privilege of meeting and working with people like those you mention, mainly in a hospice setting.
Hospices are really interesting because my experience is that the values we’re talking about there are much more prevalent. I’m interested in why.
For me, dying is the most important solo event in my life. Maybe I’m unusual but its got to be important for everyone. Why does our health service seem to fail so often to treat it so?
Jon
Certainly difficult to rewrite something unwritten…although if anyone can do it I suspect its the people here! I have certainly never come accross so many people eager to talk about something that I am reliably informed that they don’t want to talk about!
As to facing my fear…its not about willingness…not a lot of choice! Its finding a way to deal or spending your entire life as a jibbering wreck which seems a waste. The funeral thing was not a great brave decision…it was the consequence of falling in love with a fauneral director who subsequently set up as an independent. Of course I didn’t have to have anything to do with ‘the business’. I run my own business as well and initially just went into the office as I can work from there as easily as from home and otherwise I would never see him….to my amazement I found myself getting drawn in. First interested, then almost obsessed with finding more, and latterly verging on the revolutionary. Its fascinating to see the jokes the universe plays on you sometimes!
Jon, I think it’s very productive to consider the differences between general hospital and hospice care – they seem to be worlds apart in so many ways. Time pressures, staff/patient ratio, investment in staff in terms of technical and emotional education and support, general nursing skills versus genuine palliative care nursing, general pain relief versus skilled palliative pain relief, accessibility and involvement for friends and family…we could go on.
One profound difference is really between a place where efforts and expectations are focussed on mending people, and a place where there is a frank admission that mending is no longer possible. What do you do with someone if you can’t service them in your express repair shop? But if ‘irretrievably breaking down’ is just your starting point, what opportunites this opens up.
Hi sweetpea,
I completely agree with your characterisation of the differences between hospices and hospitals. Thank goodness for Cicely Saunders and those who have followed in her path!
I am interested when you say “between a place where efforts and expectations are focussed on mending people, and a place where there is a frank admission that mending is no longer possible.” Why does it seem so difficult for people to switch between one mindset and the other at the appropriate time?
This seems to me to be at the nub of the problem. I don’t think this attitude is confined to medical professional but can be found in varying degrees in families and of course the dying person themselves. Its what I think I mean by ‘fear of death’ in the article above.
Jon
Because there is, I suppose, a perfectly understandable, ghastly, dread of death. I used to kid myself that I was ok about death – you know, working with it every day, you like to feign some familiarity and acceptance. But I didn’t really know what I thought until I was put in a life threatening position a while ago, which rather concentrated my mind. And, if I am frank it, was horrifying – not at all like I’d imagined. So much for mature, calm acceptance, drifting off surrounded by loved ones gently weeping. Not one bit. And I don’t know if that would improve with different, slower moving circumstances or age. Perhaps. But part of me embraces that fear, too – it’s got to be inbuilt to some degree, for self preservation and survival.
Some years ago I acted as a link person between a local hospice and my church, and it was very interesting to see the vision that people had of the hospice – again, almost universally one of dread – a place where you went in down the one-way drive and only came out feet first. Which, of course, it isn’t – lots of hospice work is with the very much still alive and their supporting people. And it was through outreach work with local organisations that outsiders could be shown what their real work was about. But many people in that congregation avoided talking to me about it – and that was from a religious community.
However, we present it, even thinking about death is difficult for most people – I think that they generally want to box it up and keep it firmly in the back of their minds while they, understandably, live their lives as enjoyably as circumstances permit. Perhaps for them, dwelling on the inevitable is painful and darkens life to an unacceptable degree. And what we fear, we put away, hoping it will go away.
I don’t know how much fear of death really affects our attitudes to treatment of older people. But it probably doesn’t help.
Sweetpea, you’ve been through some stuff, and you share your consequent enlightenments with us, in the course of this marvellous discussion on an outstanding post – it’ll take me much of the weekend to reread and think about it! (One does slow up a bit with the passing years…). So big thanks to all concerned.
I haven’t been through what you have, ‘pea, and I expect my levels of stoicism about on a par with Private Pike. But there are also people who have been very close to death and report back on something less dreadful, e.g. a milkman we had years ago who just missed leaving us via a heart attack, and as he lay on the grass verge, thinking he was in the departure lounge if not boarding that big black plane, he thought “This isn’t so bad – pretty peaceful, actually.”
And now is of course the time to plug that wonderful, moving, informative and profoundly helpful book “Intimate Death,” by Marie de Hennezel.
Finally, it feels instinctively (how could it be researched with any accuracy?) that our attitudes towards death must affect how we view and treat old people. They are us, after all.
Gloria, I think it might help an awful lot of people if we could actually express our fear of death in a safe and supportive environment.
But, in our society, which has a general population so distanced from death on a day-to-day basis, it feels like people go around with their fingers in their ears chanting ‘I’m not listening, I’m not listening!’ How many people are disturbed when you say what you do for a living? But, how many people are also fascinated, and use the opportunity to ask all the questions they’ve never had the opportunity to ask before?
We are living in extraordinary times for mortality rates – none of our ancestors had this unfamiliarity with death that most of us have. It was part of life, like widespread disease, deformity and disability (that’s another story, but definitely linked – and may go a long way to explain changing attitudes to the elderly in our own times).
Just wanted to say that I’m proud to have written this, and to have had it featured here, and for the great comments from you lot.
Thanks Charles for the inspiration and the opportunity 🙂