1. compassionate communities an introduction to Public Health approaches to End of life Care
Allan Kellehear, PhD, FAcSS
University of Bradford

2. Introduction
The state of palliative care when I met it in 1996 Australia and 2006 UK
‘Psychosocial’ palliative care
Holistic palliative care as professional care
The eclectic psychologist and the myth of multi- disciplinarity – the trap of acute care
Community as patients, source of volunteers, funds, & raising awareness

3. What is a ‘public health’ approach to palliative care?
Expanding our approach to health care to include the community as genuine partners – not simply as targets of our service provision
FROM: direct services, clinical, face-to-face, bedside, acute care, or institutional approaches
TO: community, health promotion, partnership approaches

4. Why?
To enable end of life care to conform to current developments in the rest of the health care system
To address the burden of morbidity and mortality associated with living with life-limiting illness or loss, and the care of both
To create a unity and organizational social framework for future work built on well established concepts and practices
To re-engage the community whilst recognizing the limits to professional care and service provision
To reminding ourselves and our community that end of life care – like all health care – is everyone’s responsibility

5. Expanding the responsibility for end of life care
Going beyond an illness-bound view of end of life care – esp cancer
Including older people
Including both the well and the ill
Including carers and family
Including schools, workplaces, businesses, unions, places of worship, media, and leisure sites and groups

6. Conceptual & practice emphasis
Prevention
Harm reduction
Health and death education
Participatory relationships
Community development
Service partnerships
Ecological/settings emphasis
Sustainability

7. Creating ‘compassionate communities’: some examples
Poster campaigns
Trivial Pursuit/World café nights
Positive grieving art exhibition
Annual emergencies services round table
Public forum on death & loss
Adoption of Compassionate City Charter
Annual short story competition
Annual Peacetime Remembrance day
Suicide aftermath pamphlets

8. A few more examples Compassionate Watch/Befriending programmes
School and workplace plans for death & loss
Palliative care for beginners
Compassionate book club
Building/architecture prize for caring designs
World spirituality show day
Academic prizes for dissertations on DDL&C
Animal companion remembrance day (involve vets)
Book marks, beer mats, etc

9. What did success look like?
Greater participation in end of life care from all sectors of the community
Decrease in unscheduled service use and 24hr crisis lines
Increase in active partnerships from the different end of life care sectors – palliative, aged, bereavement, public health, intensive care, emergency services, etc
Greater recognition and connection between previously unconnected groups – cancer, HIV, aged care, youth, children
New local policy developments in schools, workplaces, local govt, unions, galleries, around matters to do with DDLC

10. What did success look like?
A greater sense of ‘normalization’ around DDLC
Increase in community involvement, education, and empathy in DDLC (ie care mentors, neighborhood watch, world café, memorial days)
Government policy changes in Australia and Scotland
Major practice experiments in Austria, England, Germany, Ireland, India, Switzerland
Sharp international rise in academic/clinical papers and books on this approach incl evidence accumulation
The International conference series on Public Health and Palliative Care (4) and the emergence of an International Association

11. The overlooked palliative care ‘facts’ that make this approach important
The longer part of dying and grieving occurs outside of institutional care and episodes of professional care
Palliative care is also about grief and loss
Dying, loss and grief are not medical matters but rather social relationship matters with medical dimensions. (Dying is not an ingrown toe nail and grief is not normally a psychiatric problem)
‘Invisible groups’ are subject to surprise, ignorance, fear, or even celebration from others. In these ways they become disenfranchised or estranged from the dominant players.

12. Recognizing the limits to service provision
Key broad challenges
Recognizing the limits to service provision
Restoring end of life care to the wider public health sphere of policy, practice, and language
Understanding and facilitating the principle that end of life care is everyone’s responsibility
Attracting and involving public health colleagues into end-of-life care

13. Key specific challenges
Patienthood vs Citizenship
Health Services vs Social Capital
Family vs Community
Palliative Care Holism vs Public Health Holism
Occupational vs Community Capacity Building

14. Practice implications
Death education for all (home and away)
Community development initiatives (home and away)
Community and service partnerships (learning about equality)
Empowerment of volunteers (re-orientation and empowerment)
From bedside to public health (learning to do both)
Rise of public health workers (making new friends)
Embracing cultural and social sectors into end of life care
Providing leadership not control

15. Further reading
A. Kellehear (1999) Health promoting palliative care. Oxford University Press.
A. Kellehear (2005) Compassionate cities: Public health and end of life care. Routledge.
L. Sallnow, S. Kumar, & A. Kellehear (eds) (2012) International Perspectives on public health and palliative care. Routledge.
K. Wegleitner, K. Heimerl & A. Kellehear (eds) (2016) Compassionate Communities: Case studies from Britain and Europe. Routledge.
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