If dying really is “an awfully big adventure” an NHS hospital seems an unpropitious point of departure. Most of us don’t want to die in one; most of us (58 per cent) will. Most of us think home is the best place. What’s not so well known is that many of those who have cared for a dying person at home are not so sure. Dying sometimes needs expert and attentive supervision.
It is normally evident when a dying person reaches the home straight. Perhaps the great adventure can be said to begin here. Is it an occasion hospital staff rise to? Do they switch to event mode and mark the passage in any particular ritual (okay, procedural) way? You’ll have your own take on that. And let us concede that practicalities may not always permit a fitting playing out of this last momentous phase. Having said which, the abandonment in so many hospitals of last offices, the washing, laying out and shrouding of the dead person, betokens, does it, a regrettable perfunctoriness, a devaluation of the event?
If you’re interested to know what people think of how their dying person was looked after in hospital you’ll want to consider a satisfaction survey conducted by Barts this year. The meat starts at page 16.
What of the info booklet they give you when it’s all over and it’s time to leave? I’ve been having a look at a few. There’s a generic flavour to them, of course, but each hospital trust writes its own. Some sell adverts to undertakers to help foot the printing bill or even make a few bob. Whipp’s Cross does this. So does Croydon.
They like to begin by courteously telling you how sorry they are: “On behalf of the University Hospitals of Leicester NHS Trust (UHL) we extend our sincere sympathy to you and your family at this sad time.” This is known as the impersonal touch.
Inasmuch as the last thing most people plan, when they’re sitting with someone who’s dying, is what they’re going to do with them when they’re dead, they need these booklets. Their world is made new. It is important that the information in them is right (enough and no more) and the tone appropriate.
There are those matters over which the bereaved, at what can feel like a very disempowering time, can exercise no choice. The obligatory bureaucratic stuff – registration, in particular. And post-mortem procedures.The instructions need to be clear and accurate. Layout and vocabulary are key. The booklets I have seen do this pretty well, though not enough tell people that they can attend a post-mortem or appoint a representative.
Then there are those matters over which a bereaved person can exercise choice. The care of the body for example. The first right they should be made aware of is that their dead person belongs to them. So it is disappointing to see so many hospitals issuing this instruction: “Following the death of a relative or friend in hospital … You will need to contact a funeral director.” [Leicester] Oh no you won’t. You can lift Nan from her deathbed and take her home now, if you want. The booklet goes on: “If you have any difficulties, the National Association of Funeral Directors will be able to advise you.” As indeed it might if the NAFD represented all funeral directors.
No booklet I have seen tells you that you don’t have to have a farewell ceremony – a funeral. All suppose that funeral directors are the best people to advise about them. They’re not, of course, because the provision of a funeral is more often than not a separate, specialist service. None of these booklets serve secularists by listing secular celebrants.
But they customarily offer this comforting information: “The Hospital Chaplains are available to talk with you if required, and the Hospital Chapel is open at any hour.” [Plymouth]
The best booklet by far is by Marie Curie Cancer Care. It is clearly written, informative and above all empowering – a really fine piece of work. And then I got to the end and discovered that a significant input had been made by John Bradfield, pioneer natural burier and tenacious campaigner for consumer rights. No surprises, then. The only bone I’d pick is that it assumes that everyone wants to have a funeral. They don’t. I suspect that if more people knew they didn’t have to have one they’d say no.
Bereaved people are only well advised when they are told what their statutory obligations are and what their statutory rights are. It seems to me that the writers of these advice booklets are very much better informed about the former than the latter.
Any views?
Why didn’t the person given the job of producing these leaflets for hospitals do a better job? Either they just didn’t have it in ’em or its plain old idleness and apathy. Either way they are in the wrong job. A new booklet written by the GFG (and consulting experts) and made available nationally via the NHS seems the obvious solution. It would better inform people of the choices available to them when somebody has died and would be free from any Local Authority/FD backhander spin.
A Big Up to that!
At the end of this really excellent post Charles, you are ask for views. Mine: Woody’s got it one one. GFG in a unique position to do a better job.Practical probs no doubt abound – how to fund it without being in hock viewswise to the Trade, and I’m no longer sure how easy it would be do anything national via the NHS, as it reels under current “reforms.” A stealthy start could be via Marie Curie and Macmillan.
When we started doing this, we were approached to advertise in one of these booklets. Cost us, wait for it, £800, more than we earned the first year. Second year too come to think of it. Not one enquiry. I imagine folk are too stunned by grief to take any of the information in. Then the thieving gets that produce it tried to insist we were tied into a three year contract, something they had omitted to mention when we signed up. I don’t like any of these ‘information’ booklets that go to doctor’s surgeries, NHS this or that. Wrong time, wrong medium.
Thank you for that undertakerly insight, Rupert. Even worse, perhaps, than these booklets are Charters generated by opinion-manipulators – hot-airy best-practice commitments signifying nothing. What difference do we think the new patients’ end of life charter will make? http://www.telegraph.co.uk/health/healthnews/8550628/End-of-Life-Patients-Charter-the-seven-pledges.html
Communities know what to do when someone dies and how to support the bereaved but many people don’t belong to communities any more, we’re too evolved for that or something, so people need to be told. If not by means of info booklets, how would you do it? What’s your medium of choice?
I’ve just read the End of Life Patient Charter. I guess if you are very lucky you might get this sort of help and guidance from the trojans in the NHS but I don’t think it will ever be widespread. Far more likely that it will come from the big charities’ nurses, carers and therapists who are better trained and funded and deal with end-of-life care round the clock.
My “medium of choice” would be a website, with a blog on it and an accompanying book, about guiding people towards a good funeral and away from influences that interfere with that worthy end.
If a man gets hit by a truck, someone dials 999 and it all gets done for him until success or failure is reached. (A broadly similar arrangement exists if he dies expectedly after a long illness.) He need do nothing for himself, which is a good thing because he’s in no condition to.
But there’s no 999 for those hit by the emotional truck that arrives in the wake of his death. They have to do it all for themselves, which is a bad thing because they’re in no condition to. Anyone can come along and do anything they like with them, good or bad, and they’ll probably even be grateful for any old outcome because it’s still better than being left alone to cope. Or so it seems to them at the time.
In neither case is there any proper preparation for the tasks ahead (once we’ve failed to save his life). The doctor washes his hands and walks away. The bereavement officer gives some (often confusing or misleading) information about what to do with the corpse and walks away.
No-one does for the living anything like what was done for the dead. They’re simply told they have to take over from now on. Any scrap of paper with a phone number on it must feel like a lifeline. To what comparable agency, then, can the bereaved turn for good and helpful support that takes into account the disorienting effects of their own collision but still leaves them in control of a situation that was effectively forced upon them?
It reminds me of the stories of the second war, when the authorities turned all the signposts around to confuse the Germans if they invaded. Which road leads where, and anyway what are you supposed to do if you get there? It’s all very well, twits like me blathering on and on about how we should talk more about death, and about what we ought to have been doing (studying the map before we set out on the journey). That utopia is still in the future, and we’ve got an emergency on our hands now, and we must deal with it now.
I think we, the readers and commenters on this blog, are here because we perceive shortcomings in the provision of service for those left with the unenviable task of disposing of their dead. We know, don’t we, that the information and help is all there. The problem is delivering it at time of need, when anyone can tell the poor souls any old thing they like, with nobody to contradict them. NAFD my arse – who writes that shit? And anyway, if Rupert got no calls, presumably nobody reads it.
So who is actually telling them what to do? From my experience as a celebrant, my distinct impression is that it’s the funeral directors themselves who call all the shots. They’re the ones you’re told (by the bereavement officer, the doctor, the hospice staff et al) you HAVE to contact FIRST. (I even have evidence from some families that at least one hospice actually recommends their particular favourite funeral director, which they themselves admit is unlawful – gasp!)
But FDs have an investment in the matter, don’t they. Isn’t there a conflict of interests here, where the one helping you choose the coffin from his brochure, for instance, is the only one in a position to point out that you may be able to buy it cheaper elsewhere, or even bury the body wrapped in an old sheet? Don’t we have a situation where there is no disinterested party advising citizens of their rights and opportunities? Isn’t the advice in the hospital leaflets actually illegal, then?
Good for John Bradfield, repeatedly reminding funeral consumers that they needn’t use a funeral director at all, but by the time Marie Curie gets involved it’s probably a bit late to start thinking about joining the one percent or so of deviants from the expected norm. The funeral directors are what passes for a 999 service, because there’s no-one else in evidence.
But there are the likes of the Good Funeral Guide, the Natural Death Centre, and god knows what other local agencies and individuals hidden by the undergrowth behind the dodgy signposts.
We have to sing our beautiful song with fuller voice and greater harmony. The time is coming.