Charity calls for more research to explore how gender impacts end of life care in Wales

A leading charity is calling for further research to explore gender differences at the end of life to help eliminate inequity in dying.

Marie Curie has also urged the Welsh Government to include palliative and end of life care in the upcoming 10-Year Women and Girl’s Health Plan.

Making the call ahead of International Day of Women’s Health on May 28, the charity undertook research to explore gender differences in end-of-life experience within Marie Curie services across the UK and found that outdated gender norms could be shaping people’s experiences at end of life.

The charity’s research involved analysis of anonymous patient data, focus groups with staff, and an external roundtable with health professionals to understand whether gender impacts end of life experience.

Although there were no evident gender inequities in the care received by patients supported by Marie Curie, the research has shown gender differences in preferred place of death and raised many questions around patterns of referral and who tends to access specialist palliative care earlier.

While home remains the preferred place of death for all, the findings suggest that men are more likely than women to note a preference for dying at home. This is not an unusual finding, with existing international evidence showing that women often associate dying at home with being a burden on their loved ones.

Additionally, past research has shown that those who have previously been carers (of which the majority are women), are less likely to want to die at home due to a greater understanding of the reality of caring pressures.

Pain free

However, previous Marie Curie research has found that being pain and symptom free, and being in the company of loved ones, are bigger priorities than dying at home, whatever someone’s gender.

The research has also indicated, although in small numbers, that slightly more women than men in the community are dying in places other than their stated preference, namely in care/nursing homes and hospitals.

The charity is calling on Welsh Government to:

Take action and include palliative and end of life care in the 10 Year Women and Girl’s Health Plan.

Create a dedicated fund as part of the Wales women’s health research budget to explore how gender influences palliative and end of life care experience.

Direct the National Programme Board for End of Life Care to commit to adopting a gender lens as part of an inclusive, intersectional, and whole-system approach to eliminating health inequities.

Improve data collection on sex and gender identity within palliative and end of life care services, which must include comprehensive training for any patient-facing roles and data collectors.

Awareness

Bethan Edwards, Marie Curie Senior Policy Manager, said: “Awareness of how gender influences a person’s health and care journey is increasing in Wales, as we’ve seen with Welsh Government’s recent commitment to a dedicated women and girl’s health plan for the NHS. But until now, there has not been much consideration or exploration of how gender may be impacting someone’s experience at the end of their life.

“For women to continue to put others’ needs above their own while they are living with a terminal diagnosis, and during their final moments, shows the impact of a lifetime of navigating a system and a world in which they are expected to take on the majority of caring responsibilities.  This doesn’t just impact the women, but also impacts men and people of all genders in society.

“Our research has suggested that gender norms and stigmas around dying are impacting how different people talk about death, if and how they seek and accept support, and ultimately, how they are shaping preferences and outcomes.

“We need to proactively eliminate harmful gender norms associated with seeking and accepting help and open up conversations about death and dying to ensure more people feel comfortable talking about the support they need and what they want at end of life.”