Richard Smith: Talking death with a CCG

Richard SmithRecently I had the privilege of talking with the members of an emerging clinical commissioning group (CCG). (For those who don’t know, CCGs are groups of GPs who will have responsibility for commissioning care for a whole population.) It was my job to try and lift the conversation above governance, finance, and the future of the local hospital. I laid out an agenda of carbon reduction, polypathology, disruptive innovation, and, my favourite, death. And it was death that got them going, so much so that eventually you had to shout to be heard. (This was over dinner, and alcohol was served.)

My line was that we’d got into a mess over dying, largely through trying to deny it. It needs to be brought back to the centre of life. “Good life, good death, good grief,” says a Scottish campaign.
There seemed to be agreement over the general idea, “But,” said one of the GPs, “what’s this to do with GPs. This is a job for society.”

“But what is society but a collection of individuals and groups, including GPs?” said I. Actually I didn’t say that, but I wish I had. What I did say was “Who better than GPs to do this. You have first hand experience of death. You are trusted. You are responsible for a population. Everybody should have a living will, and you are the people best placed to make that happen. And then in your new role, as leaders in the NHS, you can encourage conversations about death in your community.”

“You mean a 17 year old comes to see me with a cough, and I say to him ‘While you’re here, have you thought about death and have you got a living will?’ Ridiculous. People don’t want to think about death.”

“I don’t agree,” said another GP. “People can talk about death, and many want to.”

“If you want to talk about death to younger people talk about premature babies,” said a manager. “Can we go on resuscitating more and more premature babies? It doesn’t make sense. We should be like Holland and have a cut off.”

Several of the GPs then told stories of their recent experiences of patients dying. One had been completely unable to get through to the family of a woman in her 50s that she was going to die within a few days. Another had experienced the death of a child that had clearly shaken him. One talked about the “gruesome” death from dementia.

Another described oncologists as sadists: “That’s what they are. Sadists are people who inflict pain on people for their own gratification. That’s what oncologists do.”

“The palliative care people,” said another, “just want to grab patients and get them into hospices. It’s our job to fend them off. We can keep dying people in the community.”

Trying to shift the conversation to the responsibility of CCGs to encourage conversations about death in the community, I described my recent experience of attending the death festival at the Southbank arts centre for three days. As always, the  mention of a death festival led to laughter. (Laughter is very close anxiety, as any comedian will tell you.) My point was that the festival, which was constantly crowded, showed a hunger among people to talk about death.

The GPs weren’t at all sure about encouraging conversation in the community about death. “But this is your challenge,” said a very experienced manager. “You all have first hand experience of looking after individuals. That gives you more credibility than I as a manger could ever have. But now you’ve got to develop the population, the utilitarian side, the side we managers have always had.”

I said that you only had to watch daytime television, which none of the GPs did, to see that you could talk about anything with a group of people.” Maybe,” I suggested, “You are too used to being in control. You’re nervous about the messiness of a democratic conversation.” They didn’t agree at all, and one said: “The people you get on those television programmes are not normal, They’re all highly selected. People don’t want to talk about death.”

“What about assisted dying?” said one of the GPs. There seemed to be a general sense that this was coming and that it would be a good thing. An older GP remembered a time when doctors were much more comfortable about the “double effect” and helping people to die.

We didn’t reach any clear conclusions, but I felt that something important was happening in front of my eyes. This group of GPs had a real appetite for the big problems they are taking on. They felt themselves to be at the beginning of an exciting journey and are very keen to get going. They want to make a difference.

RS was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.