In recent days, I have had more than enough upsetting conversations with doctors to last a lifetime.
About how they don’t have the protective gear to protect themselves from infection or to minimise the risk of them infecting others, about shortages of critical care beds and equipment, and about what they see as the scandal that not enough of them are tested for the virus.
But perhaps the most upsetting conversations of all are about what they say to patients who come to hospital barely able to breathe, and whose underlying frailties are such that there is little prospect of them surviving longer than a few days.
Like the rest of us, most doctors – except those working in end-of-life or palliative care – do not experience death as a daily or hourly experience. Which means that many of them, especially the younger ones, are not psychologically or emotionally equipped to deal with how Covid-19 is causing so many to die.
And of course it is too late to send them on a training course or offer them immediate counselling. Many will probably end up suffering from post traumatic stress disorder.
However, the doctors to whom I speak are on the whole not agonising about themselves. Instead, they are often in a dilemma about whether to recommend to the frailest that they should be admitted into hospital, where they would be totally isolated from their loved ones and where the quality of life may well be poor, and where treatment may be the most invasive form of oxygen provision – intubation – from which they may never recover. Or whether they should return home with those loved ones, normally close family, to die.
By the way, this is NOT doctors deciding who lives and who dies. It is about doctors having the courage to have conversations with a patient and his or her loved ones about where that patient would prefer to die.
As one doctor said to me, it is pointless – surely – to put someone through the indignity of intubation if there is not the remotest prospect of recovery to a decent way of living. But equally, the doctor said, the patient can’t with decency be sent home, if the family is not given opioids and the methods of delivering that pain relief, without which dying at home would be acutely traumatic, for sufferer and family.
In other words, hospitals are not there just to save lives, but also to make sure that the death that awaits some – however brilliant the care provided by the NHS – is as ‘good’ as it can be.
I know that for many, especially those with strong religious convictions, this is a taboo subject. But most of us have to stare death in the face, and make sure that we manage it in the most humane way possible.
This brings a few consequences.
First, that hospitals are equipped to ensure that terminally ill patients who want to go home receive the palliative care they will need.
Quite often this will mean working with the outreach teams at local hospices – although their work is at risk because of a chronic funding crisis (I am acutely aware of this crisis as a recent chair of the body that represents hospices, Hospice UK).
Second, it means making sure hospitals themselves can send patients home with the relevant palliative drugs.
Third, and perhaps most important, it means that we should all think now – in an expedited way – about so-called ‘advance care plans’ for ourselves or our more frail loved ones. These advance care plans are a statement of what care and remedial treatment we would want when we are in the most acute phase of illness. They are not legally binding, but doctors have to take them into account.
The narrowest version is a ‘Do Not Attempt Resuscitation’ form, which is a statement asking not to be revived by CPR in the event of heart failure. Again, it is not legally binding.
The point of doing any of this advance planning is to provide a framework for doctors and our closest family, so they can make the most distressing of decisions about our care without quite such a heavy burden of uncertainty about what we would want for ourselves.
What is most certainly does not mean is some inhumane rule being imposed by doctors that some older or more frail people will automatically be deprived of life saving care.
So – truthfully – I was slightly surprised and a little shocked that the medical establishment – in the form of the British Medical Association, the Care Provider Alliance, the Care Quality Commission and the Royal College of General Practice – yesterday felt obliged to say that it would be ‘unacceptable for advance care plans […] to be applied to groups of people of any description’. Naturally these decisions must be ‘made on an individual basis according to need’, as they said.
Which ought, in a civilised society, be a statement of the obvious.
So, why did the medical establishment feel it needed saying?
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