End-of-life care

I’ve never met anyone who’s told me they’re immortal, apart from at a party for one of my daughters many years ago when she and several of her friends explained that they were going to live for ever as unicorns. Age has not yet (greatly) wearied them and they are not yet condemned, although those currently looking after small children of their own are often pretty tired. So, given that we’re all going to die, it shouldn’t be that difficult to talk about it. Right?

Hospital is the most common place to die (43.4% of all deaths in England in 2022), so – if you are going to talk about dying – then hospital must be the easiest place to do it. Right?

Both wrong, and this is (at least part of) why.

The people who die in hospital

When death is anticipated and its inevitability accepted by the patient and their family, the last thing they want is to be carted into an ambulance and hauled off to hospital. Arrangements should be made for necessary palliative care to be provided at home, in their nursing home or other long-term care facility, or in a hospice. When they haven’t been, the Emergency Department (ED) is where the patient lands up – it’s the one place where the lights are always on.

The people who arrive in the ED are generally those whose deaths are not anticipated, or don’t understand and accept the fact that they are dying, very often because the difficult conversation hasn’t been had. In simple terms – nobody’s told them.

What it’s like in the Emergency Department

It is reported that on some occasions there are enough trolleys for the patients who need them, but rather as the siting of a green woodpecker in my garden, which lifts the spirits, these moments are rare. A situation that a few years ago would have been regarded as intolerable is now commonplace: trolleys and beds in corridors; patients spending more than 24 hours stuck in a chair, padded if they’re lucky, hard plastic if they’re not. Constant noise of talking, groaning, bleeps. The notion of any privacy quite ridiculous.

Not a good setting for one of, if not the most private and (often) difficult of conversations.

The patient who’s likely to die

As I’ve said, people who are expecting to die will generally do all they can to avoid being sent to the Emergency Department: they’ve very often been there recently and know what it’s like. Using one my mother’s favourite phrases, I’d be a rich man if I had a pound for every time such a patient has told me, ‘I begged them (on call GP, ambulance crew, paramedic) not to send me here’. If it’s clear that there isn’t some obviously reversible acute problem, then the job of the good doctor is to prevent the medical juggernaut from getting into gear … but that’s another story.

The typical patient who’s likely to die is not expecting this and their family aren’t expecting it either. They’ve been sent to the ED because of some acute problem that can’t be managed at home or wherever they’re living. They’re in pain, can’t breathe, have become confused and agitated, can’t get out of bed and stand up, are incontinent; usually more than one of these. For the last few months or years their health has been declining, sometimes gradually and sometimes in a stuttering manner, but they’ve been able to do less and less for themselves. They often won’t know that they’re in hospital. It simply isn’t possible to have a conversation with them about the care they would or wouldn’t want to be given, and it’s rare that any advanced directive is available to provide guidance.

Default to treat

As my grandchildren tell me when playing at being doctors, the job of doctors is to make people better. It’s hard to disagree.

The default when a patient arrives in the ED, quite correctly, is to look for things that can be treated and to treat them. Histories are taken; vital signs are recorded; patients are examined physically; blood tests, X-rays and other scans are done. Drips are put into veins and fluids, antibiotics and other treatments given. All appropriate and very helpful in the right cases.

But what about when it’s futile and will prolong the process of dying rather than restore to life? Shouldn’t the doctor step in and say ‘stop!’

Saying ‘stop!’ in the ED

Easy to say but difficult to do; all the drivers work in the other direction.

Patient and family expectations

They’re not expecting death and however carefully and skillfully the possibility is introduced into the conversation, it’s rare for there not to be an immediate startle reaction: ‘how do you know?’; ‘nobody’s said this before’; ‘why has nobody said this before?’ It takes time for things to sink in. The discussion with the family is often very different in a few days’ time: ‘doctor, I see what you mean’.

But in the moment in the ED it’s difficult and likely to be unwise for a doctor not to do investigations and start treatments when confronted with, ‘how do you know?’; ‘nobody’s said this before’; ‘why has nobody said this before?’ This, even if they know the investigations and treatments are futile, and they know that doctors are not obliged to provide futile care and it’s not good practice to do so.

Why unwise for a doctor not to do the right thing?

The way the world works

Hospital Trusts, including my own, and various medical bodies are very big on talking about appropriate use of resources and avoiding futile investigations or treatments. It’s impossible to argue that these things aren’t sensible, but the way the world works is that as a doctor, you’re on your own.

If the patient dies (as expected) and the relatives complain, which is more likely than it used to be, the Trust will investigate – as they are required to do. Any doctors named in the complaint will lose an hour or more of their lives reviewing the patient’s record and writing their comments on issues raised, which the Trust’s PALS (Patient Advice and Liaison Service) office will collate into a single written response.

I can pretty well guarantee that they will apologise for failures of communication (however good this was), reassure that concerns have been relayed to the relevant medical and nursing teams, and say that processes are being reviewed. Following a complaint, I’ve never seen a formal letter sent from a Trust to a doctor, thanking them for dealing with a very difficult situation and checking that they’re OK.

All doctors – especially those early in their careers – find complaints hurtful, particularly when unjustified. As a Deputy Medical Director (which I was for 15 years) and now as a senior (meaning old) consultant, I try to check in on and support doctors who are subject to complaints.

But if doing the right thing leads to hurt and stress, what do you expect the doctor to do the next time they’re in the ED and a dying patient arrives? Do a few tests, start a bit of treatment, leave when their shift finishes. This must be a sensible answer. Every system is perfectly designed to get the results it gets (from Arthur Jones or Paul Batalden or W Edwards Deming).