At my father’s bedside, I learned what death looks like

NHS end-of-life and palliative care must focus more on the dying person’s needs and wishes – but for that we need to have proper conversations

By Jon Henley

My father spent 10 days dying.

He was 84 and he had lost his wife – my mother, whom he adored, and without whom he felt life was a lot less worth living – three years earlier. He died of old age, and it was entirely natural.

The process, though, did not feel that way at all, at least not to me. Dad had been bedridden for months and was in a nursing home. He stopped eating one day, then started slipping in and out of consciousness. Soon he stopped drinking.

For 10 days my sister and I sat by his bedside, holding his hand, moistening his lips. Slowly his breathing changed, became more ragged. During the last few days, the tips of his fingers turned blue. His skin smelled different. His breath gradually became a rasp, then a rattle.

It sounded awful. We were sure he was in pain. The doctor reassured us he wasn’t; this was a human body dying naturally, shutting down, one bit at a time. We had not, of course, talked about any of this with Dad beforehand; we had no plans for this, no idea of what he might have wanted. It would have been a very difficult conversation.

The doctor said he could give him something that would make him at least sound better, but it would really be more for us than for my father. “My job,” the doctor said, “is about prolonging people’s lives. Anything I give to your father now would simply be prolonging his death.”

So we waited. When it finally came, death was quite sudden, and absolutely unmistakable. But those 10 days were hard.

Death is foreign to us now; most of us do not know what it looks, sounds and smells like. We certainly don’t like talking about it. In the early years of the 20th century, says Simon Chapman, director of policy and external affairs at the National Council for Palliative Care, 85% of people still died in their home, with their family.

By the early years of this century, fewer than 20% did. A big majority, 60%, died in hospital; 20% in care homes, like my father; 6% in hospices, like my mother. “Death became medicalised; a whole lot of taboos grew up around it,” Chapman says. “We’re trying now to break them down.”

There has been no shortage of reports on the question. From the government’sEnd of Life Care Strategy of 2008 through Julia Neuberger’s 2013 review of the widely criticised Liverpool Care Pathway to One Chance to Get it Right, published in 2014, and last year’s What’s Important to Me [pdf] – the picture is, gradually, beginning to change.

The reports all, in fact, conclude pretty much the same thing: the need for end-of-life care that is coordinated among all the services, focused on the dying person’s needs and wishes, and delivered by competent, specially trained staff in (where possible) the place chosen by the patient – which for most people is, generally, home.

“It’s not just about the place, though that’s important and things are moving,” says Chapman: the number of people dying in hospital has now dropped below 50%.
“The quality of individual care has to be right, every time, because we only have one chance. It’s about recognising that every patient and situation is different; that communication is crucial; that both the patient and their family have to be involved. It can’t become a box-ticking exercise.”

Dying, death and bereavement need to be seen not as purely medical events, Chapman says: “It’s a truism, obviously, but the one certainty in life is that we’ll die. Everything else about our death, though, is uncertain. So we have to identify what’s important to people, and make sure it happens. Have proper conversations, and make proper plans.”

All this, he recognises, will require “a shift of resources, into the community” – and funding. Key will be the government’s response to What’s Important to Me, published last February by a seven-charity coalition and outlining exactly what was needed to provide full national choice in end-of-life care by 2020. It came with a price tag of £130m; the government is expected to respond before summer.

In the meantime, though, a lot of people – about half the roughly 480,000 who die in Britain each year – still die in hospital. And as an organisation that has long focused on curing patients, the NHS does not always have a framework for caring for the dying, Chapman says.

But in NHS hospitals too, much is changing. There has been a specialist palliative care service – as distinct from end-of-life care, which is in a sense “everyone’s business”, involving GPs, district nurses and other primary care services – at Southampton general hospital and its NHS-run hospice, Countess Mountbatten House, since 1995, says Carol Davis, lead consultant in palliative medicine and clinical end-of-life care lead.

People die in hospital essentially in five wards: emergency, respiratory, cancer, care of elderly people and intensive care, she says: “Our job is about alleviating patients’ suffering, while enabling patients and their families to make the right choices for them – working out what’s really important.”

Palliative care entails not just controlling symptoms, but looking after patients and their families and, often, difficult decisions: how likely is this patient get better? Is another operation appropriate? What would the patient want to happen now (assuming they can’t express themselves)? Has there been any kind of end-of-life planning?

Of course many patients in acute hospital care will not be able to go home to die, and some will not want to, Davis says: “Some simply can’t be cared for at home. If you need two care workers 24/7, it’s going to be hard. Others have been ill for so long, or in and out of hospital so often, they feel hospital is almost their second home. So yes, choice is good – but informed choice. The care has to be feasible.”

In 2014, the report One Chance to Get it Right [pdf] identified five priorities in end-of-life care: recognise, communicate, involve, support, and plan and do. (“Which could pretty much,” says Davis, “serve as a blueprint for all healthcare.”) The first – recognise, or diagnose – is rarely easy. How does a doctor know when a patient is starting to die?

“There are physical signs, of course,” says Davis. “Once the patient can’t move their limbs, or can no longer swallow.” But, she says, “we have patients who look well but are very ill, and others who look sick but are not. In frail elderly people – or frail young people – it can be hard to predict. Likewise, in patients with conditions like congenital heart disease, where something could happen almost at any moment.”