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.