Professor Merryn Gott (Aotearoa New Zealand) and Dr Kelli Stajduhar (Canada) are guest editors of a special issue of ‘Palliative Medicine’ on equity in palliative care. They invite your contributions about the experiences of communities and people impacted by structural inequities that illuminate innovative models of palliative care delivery.
There is an urgent need to do things differently1
The Covid-19 pandemic has exposed the deep inequities that shape how we live, and how we die. Ethnically minoritized and Indigenous peoples have experienced greater rates of morbidity and mortality. The gap between rich and poor has grown. It is clear that change is needed. Internationally, we have seen a growing commitment to centring equity within health and social care policy and practice moving forward. As Michael Marmot points out: It would be a tragic mistake to attempt to re-establish the status quo that existed before the pandemic.1
Leave no one behind2
This call has been heard by The Worldwide Hospice Palliative Care Alliance whose 2021 campaign calls for governments to prioritise equity-focused palliative care and tackle structural inequities in end-of-life experience and bereavement. Examples of structural inequities include issues related to race, ethnicity, gender or gender identity, sexuality, class, mental and physical health, and other domains that limit the opportunities people experience when seeking optimal health and wellbeing. The term may also refer to intersections between any of the above and are deemed inequitable when systematic differences in opportunities lead to unfair and avoidable outcomes. In addition, there is growing evidence of how the stigmatisation of particular social identities through, for example racism, homophobia, transphobia, ableism, ageism and/or sexism, can impact access to, and experience of, palliative care.
How services can compound inequities
Health and social services, including palliative care services, are formulated in response to the needs, and values, of dominant population groups and are not always perceived as safe places for everyone. In spite of this disadvantage, communities experiencing structural marginalisation demonstrate significant resilience, which often leads to the development of new resources and supports for people who are dying and their families both inside, and outside, of mainstream healthcare settings. However, new approaches to working to support such communities and individuals are needed and the structural and systemic forces that make health services, including palliative care services, unsafe for care for populations experiencing structural vulnerability, need to be challenged.
What can we do to promote equity in palliative care?
That is where we need your help. Currently the evidence base to inform much needed innovation and to understand the structural impediments to care is limited. We are therefore grateful to Palliative Medicine for devoting a special issue to equity-oriented palliative care and are pleased to be editing it. Papers published in this issue must demonstrate relevance with content that clearly relates both to palliative care and to populations that experience structural and systemic barriers to high-quality palliative care.
We are particularly interested in publishing empirical research which centres the views and experiences of communities and people impacted by structural inequities and illuminates innovative models of palliative care delivery. We especially encourage contributions from those in the palliative care research workforce who have been impacted by structural inequities themselves, eg. Indigenous and racially minoritized researchers as well as those from other structurally disadvantaged groups.
Potential topics could include (but are not limited to):
- Implementation and evaluation of novel, leading-edge models of palliative care for people who experience structural inequities and are underserved by palliative care;
- Mobilisation of culturally appropriate, inclusive, and equitable care with diverse populations;
- Facilitation of Indigenous-led models of care rooted in Indigenous ways of knowing and research traditions;
- Enhancement of public and social policy in relation to improving outcomes for people living with poverty, disability, homelessness, and/or addictions;
- Improvement of palliative care outcomes for lesbian, gay, bisexual, transgender, queer, and Two-Spirit (LGBTQ2S) people;
- Barriers and facilitators to culturally safe palliative care across a range of settings (e.g., hospitals, hospices, community-based organisations, care homes, home);
- Symptom experience and relief, including pain control, for people who experience structural inequities and addictions;
- Early supportive and palliative care interventions for those who experience structural inequities and are underserved by palliative care services;
- Ethical issues in the course of palliative care for people who experience structural inequities and are underserved by palliative care services;
- The experience and impact of racism and other forms of discrimination
- Innovative, participatory and creative research approaches which foreground the experiences of structurally marginalised communities
- The application of an intersectional lens to exploring end of life circumstances and experiences.
Call for papers now open…
We welcome contributions – empirical original research or systematically constructed reviews – to this special issue of Palliative Medicine. International perspectives on any aspect of equity-oriented palliative care are welcomed, as are short reports of promising practices in delivering high-quality palliative care to people experiencing structural inequities.
The deadline for submissions is 4 March 2022 and you can find instructions here. Our aim is to publish rigorous empirical original research,
- Worldwide Hospice Palliative Care Alliance’s 2021 campaign: Leave No-one behind: Equity in access to palliative care (Download the report here).
More about the authors…
Professor Merryn Gott is Director of the Te Ārai Palliative Care and End of Life Research Group, School of Nursing, The University of Auckland, Aotearoa New Zealand. Follow her on Twitter @MerrynGott You can read an earlier contribution from Professor Gott on this blog.
Dr Kelli Stajduhar is a professor in the School of Nursing and Institute on Aging & Lifelong Health at the University of Victoria and leads the ePAC collaborative. Find more information and join our newsletter here. Follow her on Twitter @KStajduhar You can read an earlier contribution from Dr Stajduhar on this blog.
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