This blog is the second in our Palliative Care and Public Health Series, where contributors explore how palliative care could become part of public health and a health care priority. Dr. John Rosenberg, President of Public Health Palliative Care International, reflects on a world where dying, death and grief is ‘everyone’s business’.
The recent Lancet Commission on the Value of Death proposes a radical reimagining of systems for dying, death and grief in what they have termed a ‘realistic utopia’. This vision of the business of death being the concern of social and healthcare systems, whole communities and civic life is central to a public health palliative care approach. The notion of death being ‘everyone’s business’ translates into tangible social structures and processes that touch every aspects of our lives as citizens. Already in many parts of the world, this revisioning is underway; the WHO Demonstration Site in Kerala, India, is a longstanding example of the influence social action can have on the lives of dying people.
It’s this view of communities made up of citizens that represents a paradigm shift in the business of dying. Rather than being overseen by healthcare systems where the recipients of care are denoted as ‘patients’ and healthcare professionals as ‘experts’, a citizen can inhabit a place in the life of their community as an active contributor to the collective good. In the social networks of communities, such citizens are key players in the business of dying. This is the utopia sought after.
But communities are not simply made up of social networks and their citizens. The places in which citizens live – cities, towns, communities – include a civic life where the business of dying, death and grieving can be addressed. When Allan Kellehear published Compassionate Cities in 2005, he brought a focus upon the efforts of civic organisations in the social equation of dying. Compassionate Cities mapped the conscious, planned and deliberate approaches to dying, death and grief that can be made through public policies addressing the particular needs of communities; where diversity is embraced and disadvantage is attended; where collective harm and grief are publicly acknowledged, particularly when trauma is shared; where healthcare services are accessible and involved but not in charge.
When whole communities are diverse, their support for dying and grieving fellow citizens must be too. Embracing spiritual traditions, engaging in secular practices of meaning-making, and listening to communities’ storytellers are equally part of the business of dying as healthcare services and the necessary clinical expertise they provide. Each brings their distinct role to the citizens whose cities, towns and communities they also inhabit. Understanding dying as a relational and spiritual process as well as a physiological one responds to this diversity and contributes to building a realistic utopia.
Of course, this is only possible when working in partnership, where the voice of communities is heard equally to that of clinical services. Citizens are as critical to the exercise of compassionate support as clinicians are to the practice of compassionate care. Civic policies that support the normalisation of dying, death and grieving amongst citizens are as necessary as clinical policies supporting best practice in pain management. Safe places for social networks to meet in a town are as necessary as safe practices in palliative drug therapy. Partnerships like these require the relinquishment of the experts’ power and the growing primacy of the community’s voice. The vision of a realistic utopia can be realised, but only if whole communities – citizens, networks, health and social services, and civic life – all contribute as valued partners with common goals.
Links and resources
- Lancet Commission on the Value of Death
- EAPC Reference Group on Public Health and Palliative Care
- Public Health and Palliative Care on the EAPC blog
- Follow Public Health Palliative Care International @PHPalCare.
About the author
Dr John Rosenberg is a Registered Nurse with a clinical background in community-based palliative care. He is a Senior Lecturer in the School of Nursing, Midwifery and Paramedicine at the University of the Sunshine Coast in Queensland, Australia and President of Public Health Palliative Care International since 2019. Twitter @JohnPRosenberg1
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