Our Rights, Our Future, Right Now
“If access to health care is a human right, who is considered human enough to have that right?”
– Paul Farmer
Reflecting on Palliative Care as a Human Right on World Human Rights Day 2024
Joan Marston RN MA, Advocacy Executive, Palliative Care in Humanitarian Situations and Emergencies (PallCHASE), writes on the occasion of Human Rights Day, December 10, 2024:
Palliative Care available for all experiencing serious health-related suffering across all ages is recognised as a human right, as part of the right to health. For those who work in the field we know it is effective from our observation and assessments, but most importantly by listening to our patients and families who have received palliative care.
It is an included element of Universal Health Coverage. Yet only 14% of those who require palliative care receive it, including, shockingly, less than 3% of children.
Palliative care remains a little bit of heaven for the few – and the few are mostly in high-income countries. This is despite the Declaration of Astana in 2018 establishing palliative care as part of Primary Health Care; the World Health Assembly Resolution 67:19 of 2014 which called for a global strengthening of access to palliative care; and the Lancet Commission on Palliative Care and Pain Relief 2018 estimate that $2.16 per capita per year would provide palliative care for most who needed it in low and middle-income countries (LMICs.) Despite these, progress has been slow, especially in LMICs.
Read: Global Humanitarian Overview 2025 (Abridged Report)
In a world full of inequalities and inequities, with one in five children either living in or fleeing from conflict, and an estimated 305 million people to be affected by humanitarian crises in 2025, access to palliative care faces even more barriers and is even more limited.
Education for youth on human rights, the focus of World Human Rights Day this year, must include the right to health and palliative care. While education is essential – it is never enough.
The recently published WISH 2024 Forum Report highlights that “Palliative care integrated into primary and community care offers the best opportunity to meet UHC goals in a sustainable and equitable way but can have inconsistent quality and accessibility” and identifies some effective models of provision, present gaps and makes recommendations.
Recommendations include collaborative efforts, integration and targeted interventions, which include education and research. There is an impressive list of contributors – yet despite the importance of collaboration, appears to lack contributors from those who benefit most from receiving palliative care and are the most effective advocates.
Rachel Coghlan, Nazanin Zadeh-Cummings, Mila Petrova and Paul Spiegel provide a thoughtful and well-researched argument for a “New-Old” dimension of caring in a humanitarian response, with a focus on three core concepts – the humanitarian – development nexus, decoloniality and localisation. Highlighting the commonalities in the traditions, ethos, and ethics of humanitarianism and palliative care, examining the history and listening to the voices of those who need and receive palliative care, their proposed Framework is arguably just as relevant to all palliative care settings, especially in low-resourced countries. Palliative care and humanitarianism are both grounded in humanity, kindness, compassion and the relief of suffering.
As we honour all who fight for and protect human rights on this World Human Rights Day , can we stand together to advocate for Palliative Care as “Our Right, Our Future, Right Now” not only in words but in collaborative, compassionate and effective action.
References
- World Health Authority. WHA Resolution 67.19: Strengthening of Palliative Care as a Component of Comprehensive Care Throughout the Life Course. Geneva: World Health Authority. 2014.
- Connor S et al. Introduction. In: Connor SR (ed). Global Atlas of Palliative Care: 2nd Edition. London: Worldwide Hospice Palliative Care Alliance. 2020. (thewhpca.org)
- Harding, R et al. WHO. Wish Forum Report. November 2024. Palliative Care. How can we respond to 10 years of limited progress. (thewhpca.org)
- Rachel Coghlan, Nazanin Zadeh-Cummings, Mila Petrova and Paul Spiegel. The “New-Old” Dimensions of Caring in Humanitarian Response: The Opportunity for Public Health Palliative Care to Advance the Humanitarian-Development Nexus, Decoloniality, and Localization Thought. The Journal of Health Care Organization, Provision and Financing. Open access. September 11th 2024
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