The Compassionate Community movement in palliative care kicked off in 2005, when Professor Allan Kellehear’s seminal work, Compassionate Cities: Public Health and End of Life Care, not only defined Compassionate Communities but also outlined the historical, political and conceptual basis of compassionate cities, providing a community development model for end-of-life care.
In this interview, Professor Allen Kellehear discusses how this approach of Compassionate Communities was incepted and how it has redefined support for the dying and bereaved.
Was there a moment—personal or professional—that sparked this idea of ‘Compassionate Communities’ as part of a broader public health approach to end-of-life care, and how did your research shape its development?
I founded the public health approach to palliative care back in 1999 with the publication of my book, Health Promoting Palliative Care. This was followed up with the later book, Compassionate Cities: Public Health and End-of-Life Care. The health promotion traditions in public health emphasize the importance of a balance between positive (health & wellbeing) and negative (illness and disease) approaches and understandings of healthcare. Furthermore, the health promotion traditions also emphasize the policy and practice side of public health. The key practice methods are community development, social ecology, services redesign, civic policy development, social marketing, healthcare and civic partnership working, and intersectoral co- operation and collaboration. Compassionate Communities is a phrase I coined to refer to the role of community development in palliative care. Compassionate cities is a phrase I coined to refer to social ecology work in palliative care.
Compassionate Communities were often neighbourhood support strategies that were often ‘grassroots’, participatory, or so-called ‘bottom-up’ strategies of people working together. Compassionate cities are frequently social ecology efforts – changing whole physical and social environments to produce changes to people’s conduct and experiences. These efforts have sometimes been characterized as top-down policy approaches. In practice, this is about how towns and cities create policies – together with their inhabitants – that inform, educate, and support people living with life-limiting illness, caregiving, and loss in the settings where they live, love, work and play – in workplaces, schools, neighbourhoods, local government, faith groups, clubs and cultural centres, and more. This public health (health promotion) approach is widely practised in mainstream healthcare (that’s why we have health and safety policies for all sectors) and in all medical specialisms (from cardiology to psychiatry).
However, palliative care had inadvertently inherited an old prejudice from mainstream health when it assumed that death and loss were ‘failures’ of health (instead of lifestyles). My work has been in restoring public health priorities to the social morbidities associated with dying, caregiving and loss (anxiety, depression, loneliness, job loss, social isolation, lost school days etc.) and the premature mortalities associated with these experiences (sudden death unrelated to the diagnosis, suicide, etc.) and addressing these with the traditional public health concerns of prevention, harm-reduction, and early intervention.
There was not one moment that suddenly sparked the idea of Compassionate Communities for me, rather it was a slowly evolving idea derived from another, earlier line of research I was engaged in. Before I wrote about this need for a public health approach to palliative care, I worked for many years as a researcher into the human experience of dying. My early time working with populations of people dying from different illnesses taught me about the centrality of social, psychological, and spiritual concerns in this final time of life. Medical issues – or problems of a failing body – were also crucially important. However, dying was largely a testing series of social challenges with a medical component, and not the reverse, i.e. dying is not a medical problem with a few social troubles. Palliative care increasingly seemed to largely focus on the latter, medical priorities. We see ample and continuing evidence of this in the preoccupation with symptom science in our journals. When social, psychological, and spiritual challenges appeared in the healthcare system it was frequently addressed in the only way a healthcare system seemed to be able to respond – send in more professionals! A public health approach is a settings-based approach. We try to help and support people where-ever they go – home, playground, workplace, temple, football club, art gallery, TV or internet. Support for people can be a significant challenge if you think only in terms of patients and healthcare sites. Unfortunately for professionals, most of the time, the longer experience of dying, caregiving, or loss is not spent in those sites. So, what then? This is the crucial reason we need civic-based, public health approaches to complement the clinical ones.
You have emphasized that dying, caregiving, and grieving are not solely medical experiences but deeply social ones. Why is this shift in perspective critical, and does it challenge or return to traditional models of care?
It is self-evident that caregiving and grief are not medical experiences at all. Away from an array of difficult medical challenges, most dying people live in the world of relationships, meaning-making, and hope maintenance in their day-to-day lives. These are social, psychological, and spiritual experiences and they require – indeed they cry out – for equally social, psychological and spiritual responses. Inadequacies in our response to these very normal and very human experiences of identity, care, and loss are commonly rooted in the fragmentary or partial quality of our social relationships in family, work, neighbourhood, or faith networks. Sometimes, some people, have no-one; and this is where professionals and volunteers play a crucial and valuable
role. But unless you have the funding capacity to put a health or social care professional on every street corner you must look for wider social measures to shore up adequate supports. If you take quality and continuity of care seriously then the professional gaze is forced to widen dramatically. This is the meaning and rationale for developing communities for care and compassion – what we now call Compassionate Communities and Cities.
It is not a ‘return’ to traditional models of care because traditional models of care were never based on the sheer numbers and type of dying we see today. In modern epidemiological and demographic terms, most societies are aging societies now. This also means that not only do we see far more older people than previous societies ever saw (and cared for) but the types of diseases we see from these populations create more lingering forms of dying – and therefore longer caregiving – than we have ever seen in the past. Furthermore, it is common for older people to have not just one, but several life-limiting illnesses at the same time. It is common for people to live with cancer and dementia, and or with heart or renal failure and then frailty, for examples. This new era of public health and palliative care means that, historically-speaking, we are now in very new territory. We cannot return to ‘traditional’ forms of care because we no longer have ‘traditional’ forms of dying, or even the ‘traditional’ numbers who would need that
care. Public health palliative care, or health promoting palliative care, or Compassionate Communities are modern approaches to end of life care for modern times and the modern challenges thrown up by the very specific epidemiology of these times.
Many people think of compassion as a personal trait. What does it mean to embed compassion in a community or social structure, and what does that look like in practice?
When I first employed the term ‘compassion’ I used it in a public health sense. Compassion is not solely kindness, and it is not solely an emotion or feeling if used in a public health meaning. For Compassionate Communities, compassion implies the key idea of reciprocity. Contrasting care with compassion is a good way to explain it. Caring in healthcare is what we do to and for
others. On the other hand, compassion is sharing the care. It is recognizing that the people we care for also care for us. It is also recognizing that those we care for have qualities and assets that are useful to us as caring people. Compassion is a reciprocal understanding that dying, caregiving and loss are universal experiences we must all endure and learn from – together. This
means that the dying, caregivers and those living with loss have insights and knowledge we can and should learn from. People living with life-limiting illness or those living with bereavement do not always want to be seen as people with illness or compromised health. They want to be seen as people – beings who can give and receive, not merely needy receptacles for our
attentions. They too can be active policy drivers and actors. In creating Compassionate Communities, it is essential that we co-create with the people effected by dying, caregiving, and loss for the benefit of all. For example, when we develop compassionate policies in schools or workplaces, we do not invent those policies as some management exercise, but rather we work with students, parents, teachers, or employees and ourselves as people who have had these experiences of serious illness, care, or bereavement and we develop our policies and test those policies together, against our mutual experiences. Only in this ‘compassionate’ way will our policies and subsequent actions have social relevance.
When you first introduced Compassionate Communities, how was the idea received? Did you face resistance from healthcare professionals, policymakers, or groups with more individualistic worldviews?
I first introduced the idea of Compassionate Communities while working as professor of palliative care in Australia. I would like to say, that the idea was mostly well received, especially in the medical community. There were many of us in hospice and palliative care – in all our professions – who felt that our field was or had been suffering from ‘mission-drift’ – a slow move away from our early commitment to ‘whole person’ care by an over-attention to professionally-focused care and the dying body. However, I did experience regular resentment, misunderstanding, and strong criticism from some individuals across the sector, as I still do. Some people steadfastly believe that palliative care is and should remain mainly bedside or clinical care in the last weeks of life. Diverting resources – time, money, or staff – to public health approaches is diverting precious resources away from the ‘real’ work of palliative care. Other colleagues did not (and still do not) understand public health knowledge, practices, or policies, and assume that volunteers or social workers already do ‘public health’, so why all the fuss? Yet other colleagues, especially health service researchers, believe that a public health approach in palliative care is not ‘evidence-based’ – a rather curious and ironic claim designed to dismiss rather than seriously challenge. As many readers will know, both the history of medicine, oncology, and of hospice care has largely been without supporting evidence for their effectiveness until quite recently. On the other hand, all the meta-analyses and systematic reviews of public health (and health promotion) effectiveness from different areas of healthcare
have shown to be overwhelmingly significant, effective, and positive. What makes critics think that the presence of these methods in palliative care would be so different is not obvious to me.
What have you learned from real-world implementations of ‘Compassionate Communities’? Have any examples—especially in Asia—surprised you or reshaped your thinking?
What I have learned from real-world implementation of Compassionate Communities and Cities around the world is what all good community development workers all around the world already hold to be true: every Compassionate Community is different because every community is different. Because communities of people living with life-limiting illnesses and caregivers and
people living with loss are all different, so the Compassionate Communities they create will and must reflect those differences. Compassionate Communities in India are different to those in Taiwan or Japan. Religious sensibilities, different rural/urban challenges, differential access (and relationships) to palliative or primary care services, or the different levels of existing community engagement and voluntarism from neighborhoods or civic organizations all play a role to make each Compassionate Community unique but no less effective in reaching their own goals of support for each other. The strength of Compassionate Communities is the acceptance and accommodation of social differences and the avoidance of a one-size-fits-all ideology so
common in institutional approaches to healthcare.
How has the Compassionate Communities model evolved since its inception, and where do you see it heading next, in terms of both research and policy?
The main observations to make about the evolution of the Compassionate Community model are twofold: (1) It is not one model but many models. If it were ‘one model’ it would be a community development failure because it would indicate a development not by the communities themselves. A one-model world is not culturally adaptable, globally relevant, life span inclusive,
or open to change. That would be the antithesis of a Compassionate Community. (2) The international rise and spread of Compassionate Communities and cities is perhaps the second most important observation to make about its evolution. National governments and major hospice and palliative care NGOs have been adopting this approach with pace. In the main, I think this is a positive thing. However, there is a risk of imposition of practices (e.g. death cafes, HR policy development, non-inclusive practices, tick-box checklists) rather than stressing the public health keys to success – palliative care leadership, facilitation, co-creation, collaboration, partnership working, and civic actions and policy development.
The future? Most of the innovation and leadership for public health palliative care (Compassionate Communities) has emerged from the hospice and palliative care sector. We have pioneered this development. Some excellent work has come from the hospital sector (e.g. Taiwan), primary care sector (UK), and charity sector (USA) but we are yet to see mainstream public health take up death, dying, and loss as legitimate subjects for public health research and development. Most of the research for this approach comes from palliative care and their researchers and policy-makers. This disinterest will not persist. In the UK and Europe, we have already seen interest and progressive movement in recent public health reports examining their possible role as new collaborators in our field. I believe palliative care will not go into the future alone for much longer, and that interest from the interdisciplinary field of public health itself will join us soon, as it has already long-done in fields as diverse as mental health, disability, and trauma medicine. Compassionate Communities as public health palliative care is one of the few fields where practice has led the research and not the reverse. Research and development for the future will come from the interdisciplinary strengths of both palliative care and its complementary dance partner – public health.
Together in this way, the future prospect for care of all people at the end of life will be a better quality one for all. After all, is that not what we all want?
Postscript:
Earlier this year in the UK, Allan Kellehear was awarded an OBE for services to palliative care on the occasion of His Majesty the King’s 2025 Birthday Honours.