Allan Kellehear, PhD, FAcSS

University of Bradford

COMPASSIONATE COMMUNITIES

AN INTRODUCTION TO PUBLIC HEALTH APPROACHES

TO END OF LIFE CARE

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

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

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

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

Conceptual & practice emphasis

• Prevention

• Harm reduction

• Health and death education

• Participatory relationships

• Community development

• Service partnerships

• Ecological/settings emphasis

• Sustainability

The methodologies • Community engagement and development - agencies (bottom up)

• Public Education in death, dying, caregiving and loss - cultural changes (across)

• Social ecology – civic changes (top down)

All these (above) to be a parallel set of social strategies

Creating ‘compassionate communities’: some examples

• Poster campaigns

• World/Death 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

• Compassionate Watch/Befriending programmes

The Compassionate City Charter

Through auspices of the Mayor’s office a compassionate city will - by public marketing and advertising, by use of the city’s network and influences, by dint of collaboration and co-operation, in partnership with social media and its own offices – develop and support the following 12 social changes to the cities key institutions and activities

Our Civic Changes 1. Our schools have annually reviewed policies or guidance

documents for dying, death, loss and care 2. Our workplaces have annually reviewed policies or guidance

documents for dying, death, loss and care 3. Our trade unions have annually reviewed policies or guidance

documents for dying, death, loss and care 4. Our churches and temples have at least one dedicated group for

end of life care support 5. Our city’s hospices and nursing homes have a community

development program involving local area citizens in end of life care activities and programs

6. Our city’s major museums and art galleries hold annual exhibitions on the experiences of ageing, dying, death, loss or care

Our Civic Changes (continued)

7. Our city hosts an annual peacetime memorial parade representing the major sectors of human loss outside military campaigns – cancer, motor neuron disease, AIDS, child loss, suicide survivors, animal companion loss, widowhood, industrial and vehicle accidents, the loss of emergency workers and all end of life care personnel, etc.

8. Our city has an incentives scheme to celebrate and highlight the most creative compassionate organization, event, and individual/s. The scheme will take the form of an annual award administered by a committee drawn from the end of life care sector. A ‘Mayors Prize’ will recognize individual/s for that year those who most exemplify the city’s values of compassionate care.

Our Civic Changes (continued)

9. Our city will publicly showcase, in print and in social media, our local government policies, services, funding opportunities, partnerships, and public events that address ‘our compassionate concerns’ with living with ageing, life-threatening and life-limiting illness, loss and bereavement, and long term caring. All end of life care-related services within the city limits will be encouraged to distribute this material or these web links including veterinarians and funeral organizations

10. Our city will work with local social or print media to encourage an annual city-wide short story or art competition that helps raise awareness of ageing, dying, death, loss, or caring.

Our Civic Changes (continued) 11. All our compassionate policies and services, and in the policies and

practices of our official compassionate partners and alliances, will demonstrate an understanding of how diversity shapes the experience of ageing, dying, death, loss and care – through ethnic, religious, gendered, and sexual identity and through the social experiences of poverty, inequality, and disenfranchisement.

12. We will seek to encourage and to invite evidence that institutions for the homeless and the imprisoned have support plans in place for end of life care and loss and bereavement.

13. Our city reviews these targets and goals every two years and thereafter adds one more sector annually to our action plans for a compassionate city – e.g. hospitals, further & higher education, charities, community & voluntary organizations, police & emergency services, and so on.

The Civic Pledge

This charter represents a commitment by the city to embrace a view of health and wellbeing that embraces social empathy, reminding its inhabitants and all who would view us from beyond its borders that ‘compassion’ means to embrace mutual sharing. A city is not merely a place to work and access services but equally a place to enjoy support in the safety and protection of each other’s company, even to the end of our days.

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

What did success for PHPC 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

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.

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

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

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

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.

• See also: http://www.phpci.info/#!resources/c52k