Palliative care is a feminist issue

Screenshot 2020-03-06 at 10.09.24 AM

Tessa Morgan shares some thoughts ahead of International Women’s Day

To mark international women’s day we need to discuss gender inequality at the heart of palliative care. This results from the fact that day-to-day care for someone with a terminal condition is provided overwhelmingly by mothers, daughters and wives.

I think this conversation couldn’t be more timely with the release last week of the second Marmot Reportwhich found that life expectancy in the United Kingdom has actually fallen for the first time ever. The report found that women from deprived areas have been the most effected.  The authors strikingly attribute these women’s foreshortened lives to the austerity cuts across the British health and social care sector.

This report adds to the growing weight of evidence that women are facing a range of inequalities both at their end-of-life and when caring for dying relatives. Evidence suggests women are less likely to receive formal palliative care services and are less likely to die in their place of choosing than men. This is starkly contrasted with the fact women are far more likely to be providing end-of-life care and spend more time doing so than men. Evidence strongly indicates that women’s mental health is more adversely effected when compared with men caregivers and non-caregivers and a few studies have also indicated that women’s physical health is also detrimentally impacted.

Why then is gender not currently reflected in key documents about inequality at end-of-life? A prime example is the Care Quality Commission 2016 report which catalogues a range of factors leading to disparities in receipt of formal palliative care services such as old age, non-cancer condition, living alone, and sexuality. Despite an admirable attempt to begin the discussion on inequality, the fact gender is not the list indicates a glaring omission.

Merryn’s plenary at last years European Association of Palliative Care conference firmly placed gender on the agenda by drawing on the available evidence to show just how. Judging from the lively discussion at the “Caring is a Feminist Issue” event organized by Emel Yorganci as part of the Athena Swan Initiative at King’s College London there is clearly a growing research interest in considering gender amongst other inequalities have on people’s end-of-life outcomes. To contribute to this growing field of research I offered some of the following suggestions that I raised during my talk at that event:

  • Clarify terms. Sex is a ‘biological component, defined via the genetic complement of chromosomes’ and should be talked about using labels ‘male’ and ‘female’. Gender refers to those roles and behaviours in society, which are socially prescribed within a particular historical and cultural context and described using the terms ‘man’ and ‘woman’. Even the most mundane aspects of everyday life – how we dress, talk, and socialise and die – are implicated in “doing gender”. Thus our analyses need to be attuned to people’s everyday experiences.
  • Think intersectionally. We need to consider how gender interacts with other kinds of social divisions including ethnicity, class, disability age because as in the words of Audre Lorde “there is no thing as a single-issue struggle because we do not live single-issue lives”. This will help us as health researchers identify those most vulnerable to adverse health outcomes.
  • Contextualise care. Rather than thinking that initiatives such as ‘care in the community’ will solve the problem of deficiencies in care provision, such policy drivers often obscure the amount of daily tending, organising, washing, monitoring provided by specific woman relatives. We should instead advocate for the re-funding of formal support services (both social and health services) to provide pre-emptive and on-going support for family caregivers and dying individuals in their homes. In this equation we also need to highlight and value the amount of unrecognised palliative care that is provided by health care assistants often working in incredibly precarious situations.
  • Work collaboratively. There is a lot of work to do to identify, analyse and theorise the extent to which gender inequality operates within palliative care. We should draw together our different methodological strengths, access to different sources of data and disciplinary and professional expertise to ensure we produce a robust picture of disparity. Through this mission of putting gender on the agenda we can continue to carefully cultivate and nourish our feminist movement in palliative care.
  • Communicate creatively. Audre Lorde argues that you cannot “deconstruct the master’s house with the master’s tools”. If we want our research to precipitate real societal change (not just an improved ‘impact factor’) we have to express our findings in a range of mediums not just in academic journal, which are the bread and butter of a university systems dominated by men. Merryn and Lisa Williams graphic novel produced in collaboration with Victoria Egli and Tatiana Tavares, shows how we can creatively communicate gender inequality in a tangible, easily digestible and aesthetically pleasing way. Further research like this – particularly with digital methods – is the way we ensure that our research gets to the health care professionals, families and politicians who need to hear our messages most.

I want to finish by re-stating that advocating for a feminist research approach to palliative care is not just an academic thing but has dire consequences for the multitude of people for whom caring for someone dying is their everyday experience. We have a responsibility as researchers to get with the memo and challenge the current circumstances in which women are dying prematurely without equal access to resources that provide the possibility of a good death.



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