Power, privilege and provocation
March 19 2020
October feels a lifetime away now as I sit at home in #SocialIsolation having been out of Aotearoa when the Covid-19 self-quarantine policy was implemented. Our gathering for Public Health Palliative Care International in the beautiful Blue Mountains would not now be possible. So it’s nice to be reminded of it with the publication of a special edition of Progress in Palliative Care containing papers from some of the outstanding plenaries delivered.
John Rosenberg, Debbie Horsfall, Libby Sallnow and myself edited the edition, enjoying the opportunity to reflect on the evolution of Public Health Palliative Care (PHPC) in the 34 years since the release of WHO’s The Ottawa Charter for Health Promotion and the 21 years since Allan Kellehear’s seminal text Health Promoting Palliative Care was published. PHPC is now recognised as an important movement promoting community rooted support for ageing, dying, caring and grieving. Key to the approach is challenging power hierarchies which position health services – and whose who work within them – as experts in managing these universal human experiences.
“With over 320 delegates, the breadth of thinking, research, practice and creativity demonstrated that PHPC is a diverse, creative and multidisciplinary movement. While this inclusivity is heartening, it also provides challenges. What are the key themes and activities of PHPC? Surely not everything goes? How does this diversity also exclude or even police its borders? What are the current relations of power and do they require naming and changing? What research is needed to support the translation of PHPC philosophy into practice? Who is still not welcomed at the table despite the rhetoric and aspirations of PHPC? The articles in this special issue speak to these challenges and questions.”
One key challenge for PHPC moving forward we picked up on was PHPC remaining a professionally led movement and the need to better engage and include community and civic elements of PHPC moving forwards. Doing so requires us to challenge “practices of exclusion, relations of power and privilege” and this is a theme the authors in this edition picked up on. For example, Suresh Kumar, founder of PHPC and host of the first conference, urges us not be seduced by romanticised notions of one united ‘community’ when we think about ‘community engagement’ and reminds us that power is not universally distributed amongst different community factions. Kelli Stajduhar reminds us of the embedded inequities that mean services often exclude those most in need of palliative and end-of-life care. Andrea Grindrod questions the notion of end-of-life ‘choice’ noting that, for many, there are few, if any, options to choose from.
The paper led by Tess with Kat, Lisa and myself explores how creative research methods which support the telling of pūrākau (stories or myths) can reclaim and retain Māori end-of-life care customs. We hoped to remind scholars in PHPC of the necessary partnering between research and communities from the very inception of research and highlight how indigenous research approaches can provide important lessons for PHPC as to how power relationships can be navigated to centre community voices. We’ll write a separate blog on that paper (upside of social isolation – increased time for blogging!).
Samar Aoun explored a neglected component of PHPC – bereavement. She argues bereavement support should move behind the standardised approaches currently embedded in palliative and end-of-life care services for more innovative social approaches which recognise, and support, the social capital which exists within community. Allan Kellehear argues for the integration of the Compassionate Cities Charter into end-of-life care and provides examples of the benefits this can bring.
One of the highlights of PHPCI2019 was the piece created by artist and scholar Peta Murray. A powerful poetic reflection, largely comprised of the words of conference delegates who participated in her interactive installation, demonstrates why the arts have to be integral to the PHPC movement. The special edition finishes with her words.
The growing interest in Public Health Palliative Care must be accompanied by research and critical reflection. It’s therefore great that the journal Public Health has called for papers to be submitted by 31 July 2020 for their own special issue in palliative care (see https://www.journals.elsevier.com/public-health/call-for-papers/call-for-papers-special-issue-palliative-care).
We must all have our fingers crossed that the 7th PHPCI Conference in Belgium will be able to go ahead in 2021. Stay safe blog readers in these strange times.
The editorial is open access, but if you want copies of the individual papers, as ever please get in touch: m.gott@auckland.ac.nz