Nothing is certain in life – except death and taxes – and so why are so many of us so bad at talking about our own mortality?
Dr Libby Sallnow, Head of the Marie Curie Palliative Care Research Department, part of the UCL Division of Psychiatry, is a palliative care doctor and spends more time than most of us thinking and having conversations about death.
“Death and dying are important, universal events that happen to all of us,” Dr Sallnow says, “They’re some of the few events that really do affect whole populations. Not only do we have to consider the end of our own life, but the majority of us will be carers and all of us will experience bereavement.”
That’s why Dr Sallnow has always been surprised by how little we talk about dying.
“Conversations tend to be quite a limited, clinical response to what is happening rather than treated as a public health event that everyone needs support for,” she explains, “I think I was probably prompted by an early childhood bereavement to think about these things more deeply; bereavement at that age felt very stigmatising and the people around me didn’t want to talk about it.
“In medical school I felt motivated to think about these big issues and what could be done differently. I went into palliative care wanting to change how people experience death and dying and reexamine the support in place for the people going through it.”
As a junior doctor, Dr Sallnow felt like the UK model of end-of-life care did not seem to fit with what people really needed and so she sought out different global models of care to see what could be learnt.
She found the World Health Organization Collaborating Centre for Building Country Capacity in Palliative Care and Long-term Care in Kerela, India, and decided to head out there in 2003 to see what they were doing differently.
“What was happening in Kerala was really revolutionising palliative care,” she remembers, “They had spoken to patients and discovered that people either couldn’t get into hospital for treatment or wanted to be at home, surrounded by those they loved and in an environment they were comfortable in. So the first thing they did was to start providing care at home. Then they built a ‘Compassionate Communities’ model of care which encourages everyone in society to provide support and care for each other during life-limiting illness and bereavement.
“I really brought that back with me and that’s why I’m a community doctor. People need and want to live out their lives in their communities and we need much better resources and models of care to accommodate this desire.”
Dr Sallnow was particularly inspired by the idea of compassionate communities, although faced doubt from some that the model would be embraced in the UK.
“People would say ‘it’ll never work’ when I spoke about it. Nobody thought that people in the UK would be willing to knock on a neighbour’s door or be involved in other people’s business, so that’s when I thought I would use research to prove that it could work.
“Research is a very powerful lever to demonstrate change. In 2012, I did a PhD investigating community care to really illustrate the way it could work, and that’s when the change really began to happen.”
In 2014, Dr Sallnow was able to secure enough funding to start a pilot project called Compassionate Neighbours.
“We started with this tiny pilot and it just exploded; everyone wanted to be a part of it, and it really shifted the norms of what end of life care could look like.”
The Compassionate Neighbours programme now trains thousands of local people across South East England to become volunteer Compassionate Neighbours, empowering them to support people in their communities who are approaching the end of life. Being a Compassionate Neighbour can take various forms including regular one-to-one visits at home, meeting up in groups or in community hubs.
“Often I think that the biggest thing I’ve learnt about death and dying is that it really unites people,” Dr Sallnow says, “Most death is distressing but it can also bring people together because it is something that we all have a stake in. Making sure the communities that we’re living in are also communities that we would like to die in is something people can see the importance of.”
Following the success of Compassionate Neighbours, Dr Sallnow was invited to be the lead author of the Lancet Commission on the Value of Death. The Commission considered the challenges of contemporary death and dying, and the fact that people are now living longer but often in poorer health.
The Commission concluded that rebalancing death and dying will depend on changes across death systems—the many inter-related social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed.
“Our health is relational,” Dr Sallnow explains, “and while we need high quality healthcare interventions and access to pain medication, we also need social narratives. We need a public health approach to end of life care, death, dying and grieving. All of this will improve experiences at the end of life.”
So what is the best way to start conversations about death?
“We need to build death in to be part of life,” Dr Sallnow says, “Then it allows you to face it from much more solid ground than if you’ve not thought about it, because it’s just too big and too frightening. Have the conversation now about what you want the end of your life to look like. Then one day, you will be ready to meet it and you will be ready to ask for the support you need from people to die well.”