By Katherine Pettus, PhD
IAHPC Advocacy Officer for Palliative Care Medicines
This IAHPC statement was delivered on March 30 at the United Nations’ 11th Session of the Open-Ended Working Group on Ageing. In the next issue of the Newsletter, I will report on two side events in April: one from this session and another at the 64th Session of the Commission on Narcotic Drugs.
Health systems everywhere are completely unprepared for ageing populations. These are the populations who have actually benefitted from public health measures and advances in infection control that allow them to live longer, often with chronic and so-called “noncommunicable” diseases. Lifelong learning and social protection are key to this demographic shift, as both those suffering from chronic diseases and their caregivers need to learn new nursing and digital skills. Caregivers and patients also need social protection following a diagnosis of serious illness when they are forced to leave employment.
Only a handful of rich countries provide palliative care stipends for caregivers. In this day and age, during and post-COVID, these need to be universal. Caregivers who have left jobs, the vast majority of whom are women, need to have their employment kept open for them, and their social security paid while they are caregiving.
COVID revealed, as we have heard since yesterday and knew before, how states have abandoned their older populations. Particularly those in congregate settings and those living alone. So-called “developed” countries had the highest rates of nursing home deaths, sending in the army to remove the bodies of those who died unattended. This “massacre of the elderly,” as a high-ranking Vatican official put it recently, must never be allowed to happen again.
Health systems must integrate palliative care as an essential service, along with prevention, promotion, treatment, and rehabilitation. Yet health services that address serious illness, dying, and caregiving are stigmatized, gendered, and underpaid compared to specialties that “save” lives and reduce “preventable mortality,” the global health metric that holds us all in thrall.
The normative framework exists now at the global level to support states developing palliative care as a component of primary care and ensuring adequate access to essential palliative care medicines for the treatment of pain and symptoms. These are lacking in more than 70% of the world, a violation of the rights of all people to the highest attainable standard of health and to freedom from cruel and inhumane treatment. The former Independent Expert Ms. Rosa Kornfeld Matte called this deficit out several times in her reports and public statements.
The International Association for Hospice and Palliative Care has submitted a paper on the normative and technical elements of a right to palliative care for older persons. Such a right should be included in any binding convention, whose drafting should begin with all deliberate speed.
Note: To read my full report on the side event that IAHPC organized at the Open-Ended Working Group on Ageing, go to my blog, here. This is a link to the video, available on the IAHPC YouTube Channel.
IAHPC collaborates with global, international, and national institutions to help further palliative care service delivery and access to essential medicines. Pre-pandemic, Katherine Pettus (who became IAHPC’s Advocacy Officer in 2014) was on the go for months, crossing continents to attend meetings and conferences, forging connections and fostering relationships, preparing presentations—seeking and cementing diverse opportunities for advocacy, continuing the collaborative pathways nurtured over the years. These days, travel is virtual, but IAHPC’s intense level of activity is still demandingly real; as with health care providers globally, the pandemic ratcheted IAHPC into a higher gear.
Snapshot IAHPC now has13 Advocacy Focal Points, an idea born from discussions on ways to effect lasting change. Each Focal Point is an “ambassador” for palliative care, who has pledged to work with Katherine to realize the IAHPC mission of a world free from serious health-related suffering. Focal Points are from Argentina, Australia, Bangladesh, Canada, Colombia, Germany, India, Kenya, the Russian Federation, the USA, and Zambia.
Notable examples of institutional collaborations:
Key IAHPC documents arise from a collaborative process: With that in mind, in 2004 IAHPC Press was launched with the publication of Cuidados Paliativos: Guias para el Manejo Clínico and The IAHPC Manual of Palliative Care, now in its third edition. Other key documents include:
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