By Katherine Pettus, PhD Senior Advocacy Director IAHPC. On October 7, 2021, the United Nations Human Rights Council (HRC) adopted Resolution 48/3 entitled simply “Human Rights of Older Persons.”
I was thrilled to see “palliative care,” usually absent from high level UN documents, referenced four times in the text, twice in the preambular paragraphs – acknowledging the challenging of accessing services – and twice in the operational paragraphs, calling upon member states to “adopt and implement non-discriminatory policies, national strategies, action plans, legislation and regulations…” to help people access it.
The resolution also calls out ageism, a significant barrier for older persons’ access, as Judith Graham’s article in the October issue of Ehospice shows.
This unprecedented recognition of palliative care by the Human Rights Council, and the associated directives to member states, have been a long time coming, especially in the glaring light shed by the pandemic on policy and service gaps.
It has been part of a multi-year advocacy strategy led by global and regional NGOs advocating for the many as yet unnamed and unprotected rights of older persons. IAHPC played a small part of this effort to include palliative care, first led by Human Rights Watch in the early 2010’s.
In my IAHPC role I have worked with two Independent Experts on the Rights of Older Persons on the issue; Ms. Rosa Kornfeld Matte and most recently Dr. Claudia Mahler. IAHPC members and partners have testified at the UN Open Ended Working Group on Aging, where we also hold side events every year, and at the World Health Organization for the UN Decade of Healthy Ageing. It was my privilege to serve as Secretary of the NGO Committee on Ageing in Geneva for several years, and to bring IAHPC into the UN Stakeholder Group on Ageing in New York.
Although the pace of change in the UN system can be challengingly slow, I am learning to appreciate the painstaking process of building the necessary collaborations and momentum to bring the relatively new discipline of public health palliative care to the attention of UN member states and secretariat officials.
Because palliative care is still widely identified with end of life, cancer, morphine and even euthanasia, it has been important to reframe the global narrative, emphasizing palliative care’s power to restore agency, dignity, and quality of life to older persons experiencing serious illness, as well as its potential to relieve caregiver burden when provided upstream rather than in the last days of life.
The Human Rights Council, Geneva
As the HRC background Report to the Resolution states,
“[T]he COVID-19 pandemic … has had a major impact on the older persons’ enjoyment of their human rights, noting that there are ‘emerging claims that there are specific human rights features particular to [the] situation [of older persons], which are not adequately addressed by relevant […] law. Of particular importance were rights such as the right to long-term care and support and the right to palliative care …. It is clear that significant gaps or limitations in effective coverage … include but are not limited to areas such as: ‘legal capacity, quality of care, long-term care, [and] palliative care.
The report, which goes into great footnoted detail about the legal gaps and barriers older persons face to access many human rights, will be a treasure trove for scholars seeking to trace the history of advocacy for the inclusion of a right to palliative care as part of the right to health, as well as the normative elements that should be included. The conclusion to the palliative care section, observes that:
Existing international human rights norms as interpreted and applied by international human rights bodies have failed to deliver a clear guarantee of the right to palliative care that can be invoked in order to ensure that the right is enjoyed at the national level. […]The articulation of an explicit binding norm affirming the right to palliative care appears to be the best option for overcoming this neglect and stimulating States to take action to guarantee and ensure the realization of this right at the national level. (italics added)
Why is this so important?
How can a UN agency resolution approved by our governments in Geneva improve patient care at the bedside? Directly, it cannot, but advocacy at the national level, by national palliative care associations, can eventually yield the policies and regulations that connect your governments’ global commitments to policies that govern the health system, institution, and service levels.
Consensus decisions taken by UN member states following evidence-based debate tend to be more “progressive” and visionary than those taken at the national and regional levels, and where possible we seek to align national regulations with that more progressive vision.
If global decisions such as this resolution are not to remain merely “pie in the sky” the palliative care community needs to up our advocacy game and ensure that our government representatives in charge of overseeing health and social systems that care for older persons know about this resolution and report on their efforts to comply with it at global and national meetings.
Call to Action:
The Office of the High Commissioner for Human Rights is preparing a report to be presented at the 49th session of the HRC in March 2022. The report will focus on the human rights normative standards and gaps as they relate to the human rights of older persons. Please contact me with any questions AND send me email@example.com a paragraph or more on the gaps faced by older persons trying to access palliative care and medicines in your country, district or institution by December 1. The deadline for inputs is 6 December so I will need time to compile your inputs in a report.
Selected background blogs:
On the Open Ended Working Group on Ageing and palliative care “Palliative care at the United Nations, a fruitful meeting” https://eapcnet.wordpress.com/2018/08/01/palliative-care-at-the-united-nations-a-fruitful-meeting/
UN Working Group To Consider Long Term and Palliative Care https://eapcnet.wordpress.com/2017/07/13/un-working-group-on-ageing-to-consider-long-term-and-palliative-care/