Unpacking Public Health Palliative Care

Written by Associate Professor Aileen Collier, Associate Professor in Palliative Care and Aged Care Nursing, Flinders University and Northern Adelaide Local Health Network (NALHN) – with contributions from Mark Hazelwood and Rebecca Patterson, Scottish Partnership for Palliative Care.

At the end of 2023, I attended the 3rd International Seminar on Public Health Research in Palliative Care, organised in Belfast in partnership with All-Ireland Institute of Hospice and Palliative Care (AIIHPC) and EAPC Reference Group on Public Health and Palliative Care. The conference theme was ‘A Human Rights based approach to Palliative Care: Towards Solutions for Public Health Palliative Care’.

I enjoyed this conference more than any other for some time. The relatively small number of participants, along with Irish hospitality, made for great conversations and connections; some of these relationships I’m sure will endure across time and space.

Karen Charnley, Director of AIIHPC, emphasised the quality and usefulness of CareSearch and I was struck by its impact and reach beyond Australian shores. It really is the most extraordinary resource. I am frequently heard sharing with students and clinicians: “CareSearch is your friend!”

The keynote presentations and panel challenged me to think more about how we can leverage and strengthen a human rights approach to death, dying, grief and bereavement, especially in the context of constrained health and social care systems and in the face of growing needs.

The Compassionate University

I have a tendency to think about public health palliative care as something ‘out there’. However, I was challenged to think about PHPC within my own communities. One of the highlight presentations was Prof Joachim Cohen, who made a strong case for the compassionate university. Prof Cohen defined the compassionate university as one “where serious illness, dying, caregiving and grief is everyone’s business”.

This made me wonder how many people – students and staff – are bereaved, experiencing loss and grief at Flinders. How many of our staff and students are carers of someone with a chronic and/or life-limiting illness? What are we actively doing to recognise these needs and to support our own community as part of a caring culture?

What’s in a name!

Dr Felicity Hasson from the Institute of Nursing Research at the University of Ulster gave a great presentation on the findings of research investigating public knowledge of palliative care in Northern Ireland. Lots of conversations ensued about terms like ‘advance care planning’ and ‘palliative care’. These discussions were less about the intractable debates and calls for the renaming of ‘palliative care’ usually driven by other health care professionals. Rather, debates and discussions were more about understanding how community members themselves speak about, understand, and indeed want to talk about issues pertaining to palliative and end-of-life care and advance care planning.

I so enjoyed furthering these discussions over dinner with Mark Hazelwood and Rebecca Patterson of the Scottish Partnership for Palliative Care (SPPC) Scotland, which has already dropped the terms ‘Advance Care Planning and ‘Anticipatory Care planning’, simply using the term ‘future care planning’ instead. As part of these conversations, I wondered if we are serious about death literacy and partnering with communities that we simply, as Mark suggested, talk primarily about death, dying and loss and grief – with the much-misunderstood term ‘palliative care’ reserved as the term for service responses to these universal (and widely understood) experiences.

Everyone’s business?

Recently, I have reflected on the disconnect between the rhetoric the palliative care movement – including me! – have espoused over several decades now: that palliative care is not ‘only’ about death and dying.

In theory, and even in research where early integration of palliative care services have been shown to make a difference, that may well be true. Yet, international data shows that most patients are under the care of specialist palliative care services for a very short time; a systematic review and meta-analysis by Jordan et al. (2020) showed that half of patients who are able to access specialist palliative care services are referred less than 19 days before they die [1]. Is it any wonder that the public have misconceptions about what palliative care is and what palliative care services do?

Yet to oversimply the issue or make blanket statements about ‘death literacy’ is also problematic. Recently, when my own father with advancing frailty needed specialist input for symptom management my mother – in her 80s – failed to convince the Advanced Nurse Practitioner at their GP practice that palliative care is not only for people with cancer at the very end of life!

At the same time and perhaps controversially, I sometimes wonder if rather than continuing to espouse the rhetoric of early integration of palliative care services, we accept the role of supporting people and their families to live as well as possible when they are dying?

In a panel session, Prof Sonja McIlfatrick conveyed how she too grappled with the question: “if it’s everyone’s business, is it no one’s business?”

I reflected on what is often mixed messaging about these issues, including as part of the conference itself. On the one hand, the : “Death, dying, loss and care is everyone’s responsibility. A public health approach to end-of-life care views the community as an equal partner in the long and complex task of providing quality healthcare at the end of life” [2]. At the same time, however, much of this work and its agenda remains professionally, academically and service driven, evidenced in the titles of many of the presentations. I wonder what message some of these professional, clinical and/or service-led presentations give alongside the presentations and research that are perhaps more oriented towards ‘new’ public health approaches.

My own presentation focused on the findings of a study exploring culturally brilliant palliative care was perhaps no exception. What right had I, as the privileged academic, to stand out front and talk on behalf of the partnership? Or as an audience member, who identified as having Pakistani heritage, helpfully critiqued: what of the power relationships within and outside of the communities we seek to partner with? Who gets to be referred to as a community leader, for instance?

I have recently reflected on and grappled with some of these questions together with Dr Libby Sallnow and Dr Kerri Noonan. Perhaps, this is simply where things are at on a ‘new’ public health palliative care journey. Nevertheless, I think they are worthy of continued debate and reflection. Is there a dark side to new public health and palliative care approaches? Are there unintended consequences of palliative care services, palliative care clinicians and academics shaping and driving this movement?

As I pondered with Mark about our shared Voluntary Services Overseas experiences and the VSO slogan – “Sharing Skills Changing Lives” – I reflected again on whose lives had been changed and was it always for the better?

I think in this respect, we have much to learn from our colleagues and friends in the Majority World, from the learnings of international development workers and scholars, and from community workers.


  1. Jordan RI, Allsop MJ, ElMokhallalati Y, Jackson CE, Edwards HL, Chapman EJ, Deliens L, Bennett MI. Duration of palliative care before death in international routine practice: a systematic review and meta-analysis. BMC Med. 2020 Nov 26;18(1):368. doi: 10.1186/s12916-020-01829-x.
  2. Public Health Palliative Care International [Internet]. 2024.
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Death and dying across the community Palliative care across the health system

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