Global Palliative Care: Reports from the Peripheries

Katherine Irene Pettus is a familiar name for her work in global palliative care as Advocacy Officer of the International Association for Hospice and Palliative Care (IAHPC) and her earlier contributions to this blog. Writing in a personal capacity, Katherine has documented her professional and spiritual journey in palliative care in a recently published book and here she explains the background to the book.

Katherine Irene Pettus.

The COVID-19 lockdown in Spain, where I have been living for the past few years, inspired me to collect some of the blogs I have written over the last few years documenting visits with home care teams that allowed me to accompany them when I went on work trips to East Africa, Latin America, Central Europe, and India. They also describe our advocacy efforts at the United Nations (UN) Organizations, and some theoretical/theological reflections on palliative care as praxis. I figured that if the virus was going to have its way with me, a slightly more permanent record of the work could be useful for students of palliative care, mainly as a humble tribute to the many dear colleagues who are the heart and soul, the salt and light, of what I see as the global palliative care movement.

Many practitioners, who are focused on building their practices and caring for their patients, aren’t aware of the fact that they are part of the global movement afoot in all the world’s regions and most countries. This movement is more than the sum of its beautiful parts – of everyone doing their bit at the bedside, working very hard, sometimes against all the odds, without counting the cost, to establish and maintain palliative care services for the few patients they can serve out of the still unreachable multitude.

I am an outsider, not a clinician, but a political theorist and trained hospice volunteer who has participated in interdisciplinary teams and has had the privilege of accompanying patients on their final journeys. Palliative care by definition is the medicine of the weak, and can ensure that no one is left behind, to steal the tagline of the 2030 Agenda for Sustainable Development. Palliative care’s heretofore unappreciated gifts are finally getting global attention in the midst of the 2020 pandemic, not the context we would have chosen for a global health debut, but one that we can be sure will never be forgotten.

Palliative care practitioners’ experiences with what is often the chaos of end-of-life communications and experience with symptom management in high stress situations have never been more in demand, and never more appreciated than in these terrifying times. Advocates and clinician leaders must ensure that health systems don’t return to business as usual once this particular crisis is over, with palliative care sidelined and under-resourced in the shadow of its well-developed health service siblings: prevention, treatment, and cure.

Palliative care advocacy is a form of speech: it gives voice – voce– to suffering, and the relief of suffering. The blogs bring the voices of providers, patients, families, and advocates at distinct peripheries: geographical, legal, and existential, to the global health narrative, which tunes out those voices – expels them to the margins of policy development. Palliative care advocacy needs voice and testimony – stories – to become politically salient to politicians at the national level, to secure funding and recognition. And palliative care providers can be stronger advocates when they acknowledge their citizenship in a cosmopolitan movement.

Our coordinated advocacy contributed to the latest WHO (World Health Organization) Clinical Guidance on Clinical Management of COVID 19, which affirms the global palliative care ethic of non-abandonment highlighted in the book.

Affirmation of this inherent value makes palliative care’s concern with suffering – pathos – profoundly democratic and non-elitist. The qualities and virtues palliative care praxis builds into practitioners at the bedside (the microcosm where they accompany suffering) have the power to shift the public policy valences (the macrocosm where global regional and national health priorities are determined) to ensure adequate care for the most vulnerable among us. It is not overstating the case to say that the work of practitioners worldwide, only a handful of whom are portrayed in the book, is demonstrating the essential value of public health palliative care, which can no longer simply be outsourced to the charitable sector, where a global health ideology focused solely on reducing preventable mortality can easily ignore it.

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Global Palliative Care: Reports from the Peripheries by Katherine Irene Pettus is available as an ebook and paperback, ISBN-13: 979-8648101401. All royalties from this book go to bursaries for trainees at Hospice Africa Uganda, which trains clinicians from all over Africa.

 

 

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Links

JOIN PALLIATIVE CARE SPECIALISTS FROM ACROSS THE WORLD AT #EAPC2020 –11th EAPC WORLD RESEARCH CONGRESS ONLINE 2020 – interactive online sessions 7 to 9 October 2020.

A blend of: On-demand Sessions, Live Presentations, Live Panels hosted by international experts, Children’s Seminar, Poster Sessions, and EAPC Group Meetings will bring you all of the latest research from the world’s top researchers in palliative care. CME accreditation will be available. Masses of content will be available on demand from 21 September until January 2021. Be a part of the first-ever EAPC World Research Congress Online. Learn and interact with leading researchers and chat with other registered delegates from the global palliative care community – all in the safety of your own home or office.

LATE-BREAKING ABSTRACTS… Share your experience of COVID-19 and the Palliative Care Response. View information and how to submit your abstract here.  Deadline: 31 July 2020.

 

 

 

 

 

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