Home Alone

The good news is we’re all living longer. The bad news is nobody seems quite sure how Britain’s health and social care infrastructure will cope with the far-reaching consequences of this increased longevity. 

At Marie Curie, Dr Jane Collins has been spearheading changes that are taking the organisation beyond the confines of its traditional role in palliative care.

Marie Curie now recognises that it’s not just the clinical needs of the terminally ill that require servicing but the psychological strain of being ‘home alone’ while facing illness.

Volunteer Scheme

“In recent years, we have recognised that people who perhaps live on their own and are approaching the end of their life are often very socially isolated,” says Dr Collins. “There has been quite a lot about this in the press lately, particularly about men.

“So we have devised a volunteer scheme called Helper Volunteers, where a volunteer goes into somebody’s home for up to three hours a week. Their role is to provide emotional and practical support. But it mainly centres around emotional support for people who are rather isolated.”

Dr Collins describes Marie Curie as a ‘roll your sleeves up’ type of operation. Its core activity is providing nursing care in people’s homes.

But while the obvious focus is the person who is terminally ill, it’s the families of those affected, she says, who probably glean the greatest benefit.

“Often it may be that the husband or wife is able to get a good night’s rest knowing their loved one’s got with them someone who’s very experienced in caring for those approaching the end of their life.

“The family is as important to the way we work as the person who needs the care. We know the two most important things for people approaching death is pain control and having family and friends around.”

But she has a problem with the term ‘end of life’, or at least the way most people perceive it.

Understandably, the image that springs to mind for most of us is of someone struggling for breath as they enter their final hours and minutes.

Precious Time

In fact, there is good evidence that end of life can be prolonged by encouraging the right lifestyle. Exercise, for example, can boost strength and buy precious time.

“Thinking about a rehabilitation programme might sound odd in the context of terminal illness but it isn’t odd at all. People who are losing weight because they have got a terminal illness may get into a vicious cycle where they don’t get out and they don’t get any exercise so they get weaker. What we want is for people to have as good a life as they can, until they have their last breath.”

She points to the positive effects on lifespan from the terminally ill continuing to pursue their favourite hobbies.

“For example,” she continues, “we are one of the beneficiaries of the National Gardening Scheme. There’s good evidence that the benefits of seeing living things and being out in the fresh air can be a boost. Even being able to look out of the window and see trees can provide a benefit.”

Starting out

Dr Collins’ passion for palliative care stems, ironically, not from years of working with those nearing the end of life but those just starting out in it.

A paediatrician by ‘trade’, she worked as a consultant paediatric neurologist at Guys Hospital in London and then at Great Ormond Street Hospital, before serving an 11-year stint as the latter’s chief executive.

“I felt it was time for a change and I have always been really interested in palliative care,” Dr Collins explains. “‘As a neurologist I looked after children for whom there were limited treatment options and recognised the devastating impact that had on families, particularly if their child died.

“I had a longstanding interest in palliative care for children and so when I was thinking ‘what am I going to do now’ and saw the job (Marie Cure chief executive) advertised, I felt that it was a very natural move.”

But she’s under no illusions at the size of the task she faces if the terminally ill and their families are to get the support they need as they face death together.

Dr Collins recognises that the lone voice of a single charity – however high profile – wields less clout than the collective force of interested parties working in unison.

Together with a number of other charities and educational organisations (including the Cicely Saunders Institute at Kings College), Marie Curie has compiled a hit list of topics that should get politicians’ attention in the run-up to next year’s general election.

She says: “One of the most important things for people is getting access to social care.

“We know from a variety of different pieces of work that have been done by us and by others that one of the reasons why people who want to die at home aren’t able to and get admitted to hospital instead is a lack of social care. That’s not to say some people don’t need to die in hospital rather than home. But many don’t.

“Social care is more complicated than health care because it’s means tested and so one of the main things we’re asking for is free social care in the last three months of life.

“Obviously, it’s quite tricky to define when your last three months are. But it’s at least something which people can start to get their heads round.

“Local authorities and their partners who are providing social care will have to understand that some people might not survive three months and some people might survive longer. This is one of the things that we are very much promoting. It already has some political traction but we’d like it to have more. We will keep talking about it and one of the advantages of working in partnership is we have a louder voice collectively than we do separately.”

The Impact

But why does a good death even matter?

Again, says Dr Collins, “it’s not only about the person who is dying but the impact on those they leave behind. In short, people remember the bad times as much, if not more, than the good.

“I meet people and tell them I’m the chief executive of Marie Curie and they will often recount their experiences of somebody they’ve loved who’s died. It could have been very recent, or it might have been 20 years ago. But there’s something enduring about the experience for those left behind. If their loved one didn’t have what they wanted, their pain wasn’t managed or they just were not listened to, that stays with people in a way that is not helpful to them.

“What should we be aiming for? For everybody to feel that a death was as good as it can be. That might sound funny. But it is what we all want for each other.”

By Pat Hagan.

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