October 9, 2021 is World Hospice and Palliative Care Day and the theme this year is “Leave no one behind: Equity in access to palliative care.” It is a unified day of action to celebrate and support hospice and palliative care around the world and address barriers to access.
Equity in access to palliative care is a timely theme due to the inequities exposed by the COVID-19 pandemic and the global commitments to Health for All. In 2017, United Nations member states committed to achieving the Sustainable Development Goals by 2030. Goal 3 is “Good health and well-being for all”, including a target on Universal Health Coverage.
‘Leave no-one behind’ is the maxim that aims to bind governments and all of us to addressing discrimination and exclusion so that all people get the health care that they need. This commitment is important as health inequities, which are unfair differences in health between population groups, are often experienced by those who lack social, economic and political power.
Palliative care inequities exist. Firstly, inequity in access to palliative care is an issue across countries. Access to palliative care is a lottery of where you are born and you are less likely to receive it if you are born in a low- or middle-income country.(1,2) Richard Horton, the editor of the Lancet, noted that palliative care was “without question, the most disfiguring inequity in health care today”. (3) Secondly, palliative care inequity exists within countries.(4) LGBTQ+ people, people facing humanitarian emergencies and children are just some of the population groups who are less likely to access the palliative care they need.
Evidence suggests that there is more that can be done to make palliative care equitable. In research from Canada, it was shown that institutional palliative care policies impede access to care for those who were experiencing homelessness.(5) Research in Zimbabwe found that LGBTQ+ people were routinely discriminated against by healthcare workers and isolated without family support at the end of life.(6) A report by Hospice UK highlighted many inequities including access to care for prisoners, older people and people living in poverty and deprivation.(7) Knowledge of inequities in palliative care is crucial to adopt strategies to address them.
There is much more to share and learn about what is being done to address palliative care inequities and what works. From PEACH’s work improving access to palliative care for people experiencing homelessness in Canada to Island Hospice and Healthcare’s work to ensure disability-inclusive palliative care in Zimbabwe, palliative care providers globally are working to address inequities in their settings.
Yet, we need to understand more about equitable and inclusive palliative care, and particularly people’s lived experience. For example, how do palliative care programmes recognise and respond to the fact that people have multiple aspects of their identity and social categorisations, such as race, class and gender, are overlapping? How much do we consider and address our implicit bias within palliative care programmes which may cause us to stereotype or discriminate unintentionally? And what are the asset-based approaches used within palliative care which recognise the resilience and strategies of people facing barriers to care?(8) Sharing what is being done and what works to address palliative care inequities is crucial.
World Hospice and Palliative Care Day provides an opportunity to share, listen and learn and it is fantastic that the European Association for Palliative Care (EAPC) is launching a blog series connected to the theme. The WHPCA website has resources to help you organise and register events. There is also key messaging – developed in collaboration with people with lived experience or engaged providers. Perhaps we can also use this Day to reflect and face our own implicit, or perhaps explicit, biases.(9)
Let’s reaffirm our commitment to palliative care for ALL people – no matter where they live, who they love, what their age or their background.
With thanks to Gill MacDonald and all the contributors to the WHPCD resource toolkit and messaging for the website. Thanks to Preeya Desh for her reflective blog on Overcoming implicit bias in relation to COVID-19 demonstrating great honesty and boldness in considering palliative care equity. And thanks to Jane Rowley et al. for their thought-provoking discussion paper “The impact of poverty and deprivation at the end of life: a critical review”. Both of which I recommend for further reading.
This article was first published on the EAPC blog https://eapcnet.wordpress.com/2021/10/01/leave-no-one-behind-equity-in-access-to-palliative-care/ and ehospice is grateful for permission to republish.
- Knaul, F. M., Farmer, P. E., Krakauer, E. L., De Lima, L., Bhadelia, A., Jiang Kwete, X., … Alleyne, G. A. O. (2018). Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. The Lancet, 391(10128), 1391–1454. doi:10.1016/s0140-6736(17)32513-8
- WHPCA (2020). Global Atlas of Palliative Care 2nd Edition
- Horton, R. (2018). Offline: “A sea of suffering.” The Lancet, 391(10129), 1465. doi:10.1016/s0140-6736(18)30889-4
- Reimer-Kirkham S, Stajduhar K, Pauly B, et al. Death is a social justice issue: Perspectives on equity-informed palliative care. Adv Nurs Sci 2016; 39: 293–307
- McNeil R, Guirguis-Younger M, Dilley LB, 2012. Recommendations for improving the end-of-life care system for homeless populations: A qualitative study of the views of Canadian health and social services professionals. BMC Palliative Care11(14)
- Hunt, J., Bristowe, K., Chidyamatare, S., & Harding, R. (2019). “So isolation comes in, discrimination and you find many people dying quietly without any family support”: Accessing palliative care for key populations – an in-depth qualitative study. Palliative Medicine, 33(6), 685–692. doi:10.1177/0269216319835398
- Hospice UK (2021) Equality in hospice and end of life care: challenges and change. London: Hospice UK
- Rowley, J. et al.(2021) ‘The impact of poverty and deprivation at the end of life: a critical review’, Palliative Care and Social Practice. doi: 1177/26323524211033873
- Desh, P (2021) Overcoming implicit bias in the age of Covid-19 in Op-M
Links and resources
- Contact Claire Morris by email.
- Worldwide Hospice Palliative Care Alliance
- Follow us on Twitter @WHPCA
- Download the World Hospice and Palliative Care Day Toolkit.
- The next guest contributor to the EAPC World Hospice and Palliative Care Day series will be Professor Irene Tuffrey-Wijne, Co-chair of the EAPC Task Force on Intellectual Disability, who will be followed by Dr Mary Turner and Dr Aline Chassagne, Co-Chairs of the EAPC Task Force on Mapping Palliative Care for Prisoners in Europe.