In our Palliative Care and Public Health blog series, contributors explore the pressing issue about how palliative care could become part of public health as well as a health care priority. Marie-Charlotte Bouësseau, Elizabeth Gwyther & Allan Kellehear reflect on the challenges which lay ahead and the potential for change.
The World Health Assembly resolution 67.19 (1) adopted by all Member States in 2014 recognized palliative care as an ‘ethical responsibility of health systems.’ They make it clear that this responsibility is shared by many stakeholders including clinicians, policy makers and every sector of civic society. This has become known as creating Compassionate Communities. To this end, the World Health Organization (WHO) has published several documents to guide government health services in the integration of palliative care into health systems, including ‘Integrating palliative care and pain relief into primary health care’and ‘Integrating palliative care and pain relief into pediatrics’. However, making our common aim to build Compassionate Communities a reality requires greater policy commitments from our local governments, employer groups, schools and neighbourhoods. The shared responsibility for the provision of palliative care between clinical services and communities is essential to ensure holistic care which meets the needs of individuals as well as equitable access to palliative care from the early stage of life-threatening diseases. Learning about how to work with civic sector partners in order to become a Compassionate City or community is essential (2).
Progress has been made towards this vision over the past years, even in resource-poor settings. The recent WHO publications ‘Assessing the development of palliative care worldwide: a set of actionable indicators’ and ‘Quality health services and palliative care’ provide guidance in monitoring the implementation of quality palliative care. The publication on palliative care indicators describes the strengthening of palliative care services as building a house with ‘Empowerment of People and Communities’ as a foundation together with appropriate Health Polices and Research. The walls of the house are ‘Use of Essential Medicines’ and ‘Education and Training’, and the roof of the house sheltering people in need of palliative care is ‘Provision of Palliative Care’ within Integrated Health Services. However, the foundation of the house – the equal participation, support and end of life literacy of communities, continues to receive less attention. Only by inviting local governments, employer and faith groups, schools and neighbourhoods into a discussion about what THEY can do as palliative care providers – providing practical social, psychological and spiritual supports – will we be able to empower them to be our true partners. Because without empowering communities as a basic partner in the provision of palliative care, aspirations of quality, sustainability, and continuity of care will not be realised, nor will the diverse needs of individuals receiving palliative care be truly met. Without full community participation in palliative care as co-providers of care in partnership with health services full integration of public health with palliative care will remain elusive. This will mean a failure to support the far greater time that people spend away from their healthcare services while dying, caregiving or grieving. We will fail the public health mission of caring for people at the sites where they live, love, work and play.
This health promotion dimension of palliative care remains a challenge for a genuine integration of public health and palliative care policy and practice because of the persistence of thinking of palliative care as solely clinical care, and as a service to be performed in the last weeks of life. But palliative care is more than our clinical work. Health and wellbeing are just as important as symptom management, and grief and bereavement are everlasting experiences that require everlasting responses. The sustainability of our everlasting responses must be driven by our civic institutions. Although implementation of these principles grows everyday, the need for this message to be spread remains urgent. This change is here, but your voice can help spread that change.
Ask your local palliative care service or your local palliative care professional association – what are our Compassionate Community initiatives for health-promoting palliative care in our region? As the whole society needs to be included in the ‘ethical responsibility of all health systems’(1), international organisations such as WHO can work with other key partners in countries to raise community development to an equal place alongside current policy emphasis on health service development. Only then can we truly fulfil our aim of quality of life until the end of life.
References
- Sixty-seventh World Health Assembly ‘Strengthening of palliative care as a component of comprehensive care throughout the life course’ May 2014 Resolution 67.19
- Abel J., Kellehear A 2022 Oxford Textbook of Public Health Palliative Care. Oxford University Press, Oxford.
Links and resources
- The EAPC Reference Group on Public Health and Palliative Care have a special EAPC blog series on public health. Read the blogs here.
- The End-Of-Life Care research group is hosting the 7th international Public Health Palliative Care International conference ‘Democratizing caring, dying and grieving: participation, action, understanding and evaluation’. Bruges, Belgium, 20 – 23 September 2022. Find out more here.
- The End-Of-Life Care research group Public Health & Palliative Care Research Summer School is taking place on 14 to 17 September 2022, in Ghent, Belgium.
About the authors
Marie-Charlotte Bouësseau is Team Lead in the Department of Integrated Health Services at the World Health Organization.
Elizabeth Gwyther is Emeritus professor of palliative care at the University of Cape Town, previous chair of the Worldwide Hospice Palliative Care Alliance and a consultant for WHO. Twitter: @lizhpca
Allan Kellehear is a clinical professor with a joint appointment in the College of Nursing & Health Sciences and The Robert Larner College of Medicine, University of Vermont, USA.
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