Dying – a Human Experience

Palliative care may lack the glamour of some other areas of medicine. But in terms of importance, it’s rapidly gaining ground, says Professor Sheila Payne, Co-director of the International Observatory for End of Life Care. By Pat Hogan.

Stories about the NHS usually begin with how it lags behind health services in other countries and how patients are being deprived of treatments routinely available elsewhere.

But when it comes to palliative care, things are a bit different.

In 2008, the NHS ‘End of Life Care Strategy’ for England and Wales was published – making Britain the first country in the world to have a government initiative for dealing with a much-neglected area of healthcare.

According to Professor Sheila Payne, who heads the International Observatory for End of Life Care at Lancaster University, it marked a crucial turning point in the way the health service thinks about patients’ final days.

Improving Dying

“The really important thing is it highlighted that dying is common to us all. It’s a common human experience and we need to be concerned about improving dying for all people,” says Professor Payne. “That means not just focusing on hospices. They are really important and have pioneered some very interesting and compassionate ways to care for people. But we now have an older population where many more people die in the care home sector than used to. It’s estimated at about 20 per cent and that’s roughly the same as the number of people who die at home.”

This, says Professor Payne, poses a problem. Hospices have expertise and specialist staff, whereas care homes by comparison are often under-resourced.

“They tend to have fewer and less well qualified staff and less money and every so often you’ll hear about a big scandal,” she explains. “But what we don’t hear about is the really good care that they provide as well.”

The Risking Burden of Dementia

With four times more beds in the care home sector than in the NHS, its role in palliative care is likely to come under increasing scrutiny, says Professor Payne. And the rising burden of dementia can only make this scrutiny more intense.

“Probably 70 to 80 per cent of residents within care homes now have dementia and that is hugely demanding for the care givers. I think we have such a lot to learn about how we really give good quality care for people with dementia,” she says.

“Let’s not forget, dementia is a fatal condition but people don’t die from it. They die with it. Typically they have dementia for around about eight years so it’s very unlike, for instance, lung cancer – if you have a diagnosis of lung cancer most people don’t survive much more than about six months to a year, so it’s a much more rapid decline.”

Caring for Dementia Sufferers

Professor Payne questions whether hopes that more dementia sufferers will be cared for in their own homes are realistic – especially when those doing the caring may already be advanced in years.

“How sustainable is it when it’s 80-year olds caring for 90-year olds? And we also need to think about how we provide care in the more rural and sparsely populated areas. If you live in a city or a town then care is more widely available. In rural areas, it’s really challenging,” she wonders.

With care work paying low incomes and other more attractive career options available, recruiting good staff for dementia care is going to become more of a problem, she warns.

One solution would be to turn it into a specialty, in much the same way as paediatrics or neo-natal care is regarded as highly skilled.

“I think we need to recognise that caring for people with dementia in old age is hugely specialised and requires people with special skills,” she says.

About the International Observatory for End of Life Care

This shifting complexity of palliative care, with dramatic changes in the causes, location and manner of death, was one of the reasons why the International Observatory for End of Life Care was set up in 2003.

Its initial goal was to map and compare palliative care services across Europe.

But since joining in 2006, Professor Payne has broadened the objectives. Now it functions not just as a research body, compiling evidence on palliative care services, but as an education resource, offering post-graduate education to students in what was the world’s first PhD programme for palliative care.

And when it comes to research, the focus is on exploring the experiences of those who have been on the receiving end of palliative care services – rather than just the providers.

“We work on the patient and family experience,” says Professor Payne. “I’m particularly interested in the experience of families. Not just the care they received but, if they’re bereaved, what was it like and what were their needs and how did they manage their grief and loss?”

One recent piece of research looked at family members providing care at home for dying relatives. One of the most surprising findings, Professor Payne admits, was the extent to which carers had responsibility for medication.

“They really found that quite difficult as none of them had had any formal training. There were no booklets on what to do and they were afraid of the pain medications, particularly things like morphine. If you’re faced with a family member who is, say, crying out in pain, do you put another patch on, do you give them an extra tablet?

“They were worried they might cause death. These people are doing a fantastic job and many of them accepted the responsibility. But they find it stressful and preparing them for their role by helping them deal with the medications would relieve some of the stress.”

Pain control, however, isn’t the only thing foreign to many loved ones. So is dying itself. Professor Payne says much can be done to educate family members on the physical signs of dying as many will not have witnessed them before.

“As people deteriorate,” explains Professor Payne, “they need to drink less, don’t urinate so often and their breathing might start to change. They might get a ‘death rattle’, where secretions gather in their throat a bit. It doesn’t mean they’re in pain and they’re not choking. And even though people may look unconscious, they may still be able to hear. You can still talk to them and that can be quite comforting. It’s ok to stroke their hand, or play the kind of music they like. And it’s ok not to worry about giving them something to eat because they are probably not hungry anymore.”

Achieving more Integrated Care

But if palliative care is to grow, it will take a lot more than patient education. And neither is the solution simply to build more hospices, says Professor Payne. Instead, the answer lies in better integration of services.

“My vision is better integration where the hospice sector teaches the skills to other sectors. At a European level, I’d like to get palliative care into the under-graduate programmes of all doctors, nurses and social workers.

“Just a basic understanding of the principles of palliative care that means medical and health care staff of the future understand that communication is really important, as is good symptom management, discussing with people their wishes about end of life and recognising what bereavement and loss does to people. These should be fundamental skills – like learning to take blood pressure.”

Professor Payne’s View of Palliative Care

To some health professionals, palliative care remains something of a backwater.

So what is it that drives Professor Payne on to raise its profile and secure the reputation it deserves?

“I’m really interested in loss,” she says. “My view is that loss is inevitable yet people are often so resilient. I was a nurse before I became a psychologist and I kind of think that, if there is something really fundamental about birth, which is a really wonderful and exciting time, then there is something pretty fundamental in the human condition of dying too.

“You don’t have a second chance to get it right. So if you can make it as comfortable and as respectful and as dignified as possible, it not only has an impact on the person dying, but it has an impact on those who witness the death.

“None of us are going to live forever. We want people to have healthy and good quality lives but we want them to known that, actually, dying can be okay too.”

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