‘You don’t come here to die, but to learn about living’ – the importance of peer support in palliative care

For people with a terminal diagnosis, the companionship of those who know what they are going through is a critical part of their care

Tea and biscuits
Picture posed by models (Credit: Image Source/Rex)

A group of friends are sitting around with biscuits, tea and coffee, chewing the fat about the soaps and the news and joking with each other about their attractiveness to potential suitors. It could be like any other coffee morning, except the people in question have all received a terminal diagnosis and are users of palliative care services. If there is despondency among the group, who meet every Thursday for two hours at the Princess Alice Hospice in Esher, Surrey, it does not show. Instead, the atmosphere is one of friendship, conviviality and mutual support.

It’s great to be with people who are in the same boat, who know how you feel, know about the good days and bad days.” Paul, a patient at Princess Alice Hospice.

“This is the highlight of my week,” says Anne, one of the group. “I’ve only missed one session through not being well. I drag myself because I know it’s going to do me good. You get all these people together and you talk to them as if you’ve now them for a long time.”

Many of the group say that they were filled with dread when hospice care was first suggested to them but their experience of it has changed their attitude completely.

“When my doctor first told me I was going to a hospice I thought ‘Christ, no way am I going to a hospice, I’m not going to pop my clogs’,” says David. “You get the wrong impression. The hospice does such good things for you. Every day there’s something on.”

“When my GP first suggested the hospice it really upset me because you think about dying,” says Shirley. “But we don’t think about our illnesses [at this group]. You get a feeling when you walk in the door that it feels like home.”

As family and friends can struggle to understand what a terminal diagnosis means to a loved-one, being with people who know what you are going through is of crucial importance.

Paul, who was diagnosed last January with a fifth bout of bowel cancer and given six months to live, says: “I was getting depressed at home. A lady came out to see me to help me with pain relief and suggested that I come to the Thursday club and I haven’t looked back since. It’s great to be with people who are in the same boat, who know how you feel, know about the good days and bad days, and also to forget about the illness and have a nice couple of hours chat with like-minded people.”

Brian, who has also outlived a prognosis of three-to-six months to live that he received last year, says: “You don’t come here to die, you come here to learn about living – none of us know how long we’re going to be around.”

As well as mutual understanding, the groups and others like it run by hospices as part of their day services can be of particular importance to isolated patients.

Says Yvonne: “My husband died and I couldn’t cope with going back to a big house and I got into drinking and that led to cirrhosis of the liver. The nurses recommended this group because all I was doing was being stuck in the house. I’ve got a lot to thank the hospice for.”

The positivity of the group also rubs off on the people who support them, including the volunteers who play such a critical role in the running of the hospice.

Ian, who helps out with the running of the group, says: “When I started I was absolutely terrified. How do you look people in the eye given what they are going through? It’s been a really rewarding and humbling experience. You learn more about living life here than you do anywhere else.”

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