The dying spend less than 5% of their time with doctors and nurses, and 95% doing something else, perhaps alone, with family and friends, walking the dog, making love, reading poetry, or watching the television. “Dying is not hard,” said Alan Kellehear, 50th Anniversary Professor, End of Life Care, University of Bradford in London this week; it’s what happens on the journey to death, which may last years, that can be hard: anxiety, depression, fear, loneliness, social isolation, stigma, looking into the abyss, and suicide. Yet palliative care concerns itself primarily with the 5% not the 95%.
And the grief that starts before a death and continues after death lasts not for weeks, months, or years but forever. “What are our forever strategies?” asked Kellehear. “Grief,” he continued, “is the least understood area of palliative care,” and probably much more pervasive than we realise and an important ingredient of many social problems—from gang stabbings through alcoholism and loneliness to suicide.
The action with the dying and the grieving is not in hospitals, hospices, or primary care clinics but in homes, workplaces, schools, golf clubs, parliament, and the community—which is why a public health strategy is needed. Yet palliative care, said Kellehear, is the only medical specialty that has paid no attention to prevention, harm reduction, or early intervention. It has concentrated only on the final phase of dying.
The rudiments of public health
Joking that he could save members of the audience £9000, the cost of a masters degree in public health, Kellehear ran through the methods of public health before describing how they are now being used in relation to death and dying.
Public education is one of the methods of public health, but like everything in public health it has a political component. Kellehear described how when he lived in Australia, messages about using a condom were everywhere when there were only 45 deaths a year from HIV/AIDS. Yet not a single thing was done for the 100 000 a year dying and grieving.
Community development must build on the community’s needs not the paternalism of public health practitioners. It’s about doing things “with” people not “on people.” Humility is needed, and, bemoaned Kellehear, public health professionals—epidemiologists, health service researchers, and biostatisticians—are the hardest people to get on board with community development; they are reluctant to get their hands dirty. Academic incentives, which reward intervention trials rather than community development, are wrong, argued Kellehear.
Social ecology is manipulating the environment to get positive outcomes. Kellehear told the story of being asked to do something about the drunken carnage that happened every Friday night in Geelong in Australia. He and his team of researchers changed the environment with interventions like putting food on bars, either removing chairs or bolting them to the floor, insisting that gentle music be alternated with headbanging music, and telling the police not to arrest people unless there was a threat to life. The result was a 70% reduction in injuries. Crucially, the programme depended on having the full support of the city authorities.
Sustainability is “the final and only test” of public health programmes, said Kellehear. “If you [public health practitioners] are needed” then you are providing a service not implementing public health.
Compassionate communities and cities
Kellehear and others recognising how public health has failed to respond to death and dying have launched compassionate communities and cities that use the methods of public health. There are now as many as a thousand compassionate communities—mainly in Australia, Britain, Canada, and India. There are about 40 in Shropshire.
Every community is different, but there are, said Kellehear, two broad categories of compassionate communities: those that increase death literacy and awareness through death cafes, book clubs, poster campaigns, short story competitions, and the like; and those that create social support for those with long term illness or coping with grief and loss. Some communities combine the two. Kellehear favoured community support, saying he was “not a big fan” of programmes to raise awareness. The box lists examples of activities undertaken by compassionate communities.
|Examples of interventions used in compassionate communities
There are, he continued, good things about dying. He described what he learnt in his PhD when he interviewed 100 people in an oncology ward within six months of death. They made new friends, improved their relationship with their spouses, transformed the way they saw things around them (reminding me of Denis Potter in his famous interview describing how he saw “the whitest, frothiest, blossomest blossom that there ever could be” as he was dying), and watched more television (“Try getting that into the Lancet,” said Kellehear). People faced death with “courage not fear.” He learnt too that a third of dying people had visions of loved ones—as do a third of those grieving.
These good things, he said, need more promotion. He regretted that public health practitioners use death to scare people—“if you don’t stop smoking you’ll die….if you don’t use a condom you’ll die.”
Compassionate communities are mainly led by and hospices and palliative care, and each community goes about it differently. The problem is that coverage is non-systematic and communities “go for the easy bits.” This has led to the concept of community cities, which are led by charters. The box gives an example of what’s in a charter, and the charter of Plymouth can be seen here: https://www.stlukes-hospice.org.uk/wp-content/uploads/2017/06/Compassionate-City-Charter.pdf
|Compassionate Cities Charter
The compassionate cities programme provides a route map for communities and is an example of social ecology. Ideally, they are both top down and bottom up, involving every part of the community. The result can be stronger outcomes than with community programmes.
There are compassionate city programmes in Frome (Somerset), Inverclyde (Scotland), Limerick, Londonderry, Seville, Burlington (a borough of Toronto), New Westminster (a borough of Vancouver), and Calicut (India). Programmes are beginning in Cologne, Berne, Taipei, Innsbruck, Minnesota, and Melbourne.
There have been conversations about starting a programme in London, but Kellehear thinks that with big cities, programmes are most likely to be successful in individual boroughs rather than in the whole city. There are many professional organisations, including Public Health England, supporting the idea. But, warned Kellehear, “the palliative care mafia” (as he called them) may not be helpful, and local authorities are in such a sorry state that they are reluctant to take on anything new.
What’s the evidence?
What’s the evidence for these programmes, asked Kellehear. He started defensively by pointing out that medicine had been around for a thousand years without evidence of effectiveness, oncology for 30 years after the Second World War without progress, and palliative care for 30 years without evidence. You can, he said, “evaluate too early.” But public health has lots of evidence stretching back a hundred years (clean water, sanitation,) to support its effectiveness. Why wouldn’t public health measures work with death and dying?
There does begin to be evidence of effectiveness, including a systematic review conducted by Kellehear and others. A retrospective study of the programme in Frome has shown a progressive reduction in unplanned hospital admissions while the rest of Somerset had has increases. The National Institute for Health Research has issued a call for research on compassionate communities.
What is needed, said Kellehear, is “a convincing argument to reprioritise.”
Reprioritisation might have to include thinking about coordinating community programmes. Those concerned with diabetes, obesity, drug and alcohol problems, and dementia are also keen on community programmes.
One of the needs for the future is quality assurance of programmes, recognising that bad experiences will inevitably occur. Evaluation will continue to be a challenge. Programmes must be co-created and co-designed, and all that has been learnt needs to be digitised. Importantly, programmes need to wean themselves off dependency on services, including the NHS. “Every mum and dad in England needs to participate.” Funding will be important, and local authorities are suffering from underfunding; but, pointed out Kellehear, this programme started 20 years ago and 80% of the work has been unfunded.
I left the meeting mightily impressed. What Kellehear describes is, I’m sure, the way to improve the experience of death, dying, and grief in Britain and beyond and to reverse the remorseless medicalisation of death.
Richard Smith was the editor of The BMJ until 2004.