Palliative and end of life care must be included in the upcoming 10-Year Women and Girl’s Health Plan, while further research is needed to investigate how gender impacts palliative and end of life care experience in Wales, leading end of life charity Marie Curie has urged.
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to explore gender differences in end of life experience within Marie Curie services across the UK and found that outdated gender norms could be shaping people’s experiences at end of life.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 is calling for more research and awareness to explore how gender impacts palliative and end of life care experience in Wales, to ensure a better end of life for all.
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.
Sam Skelton, of Caerleon, has lung, lymph, plura and spinal cancer. It is the third time she’s had cancer, and when diagnosed in 2021 was told she most likely had two years to live.
“The challenges are endless…the mental health implications of accepting you are dying and the emotionally draining practicalities of arranging your home, possessions, finances and last wishes so that no one is too burdened when they are grieving.
“I can feel like a burden, but at the same time I get annoyed at that, because sometimes, for example, if Simon’s been in work all day I’ll still be cooking in the kitchen at the end of the day – and I’m not going to eat, because I feel really sick. So, I question why am I doing this and then I think “well, it’s a fair distribution of work really”, but is it, or am I doing it because it’s a stereotype?”
She said the biggest challenges for her are allowing others to care for her due to feeling like a burden, after raising her three children and trying to maintain some agency and financial independence.
She adds that reassuring and supporting family and friends through her terminal lung cancer diagnosis also takes its toll.
“All of the above as your body is failing and you have less and less energy to deal with it. I am not frightened of dying but I never realised the process of dying would be so hardcore.
“Practicalities are really stressful. When you have treatment, how are you going to get there, how are you going to get back, who is going to look after you, who is going to cook, clean, sort everything out? I’ve driven myself to chemo before and then come out and felt too unwell to drive home.”
Sam added that she felt that being outwardly upset at her prognosis in front of some male healthcare professionals, was an “inconvenience” to them – something else she believes needs to be tackled.
The 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[i].
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[ii]. However, it is worth noting that 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[iii].
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.
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.”
Improved data has the potential to increase our understanding of how gender and other intersecting protected characteristics may be impacting end of life experience, enabling us to provide better end of life experiences for all.
The research found some professionals felt they lacked experience with supporting diverse communities and this had led to a lack of confidence in initiating and having conversations around someone’s gender identity and their pronouns, due to a fear of getting it wrong or inadvertently offending someone.
If you need support, Marie Curie can help. Contact our Information and Support line on 0800 090 2309 if you need a listening ear.
International studies have shown the impact that gender can have on end of life care experience, with many highlighting the disproportionate impact on women. To contextualise this press release, the inequities highlighted in existing research should be acknowledged.
Evidence shows that women often report more severe daily feelings of pain, nausea, and fatigue[iv],[v],[vi], but may also have to report greater symptom distress than men for their pain to be acknowledged[vii].
While some research shows that women with a terminal illness tend to be more open, accepting of palliative support, and engaged with their end of life journey[viii],[ix], other studies show that some women are less likely than men to state a preference for end of life care treatments such as chemotherapy, cardiopulmonary resuscitation, and artificial feeding[x],[xi].
Past social norms have dictated a society where women are deemed natural caregivers, and many women report feeling like it is their duty to provide care for others[xii]; however, women also tend to be more likely to express fears around feeling like a burden if they themselves need the reciprocal level of care from their family and loved ones[xiii].
In fact, some studies report more women receiving care and support from healthcare professionals and specialists rather than unpaid carers[xiv].
Furthermore, in comparison to other cohorts of the population, women aged under 65 years from more deprived areas of Wales are also more likely to need out-of-hours emergency visits to A&E in their last year of life[xv].
About Marie Curie – mariecurie.org.uk
Marie Curie is the UK’s leading end of life charity. The charity provides essential nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death, and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end-of-life care and bereavement support.
Marie Curie Support Line 0800 090 2309*
Marie Curie trained Support Line Officers can provide practical information on everything from managing day-to-day with a terminal illness, to planning for end of life. Our support line can offer emotional support if someone needs a safe space to talk, or some guidance based on their situation. We have a dedicated bereavement service where callers will be paired with a volunteer, who can offer a listening ear and support over six sessions, as well as Check-in and Chat, a service that offers regular calls at a time that suits you. *Calls are free from landlines and mobile phones.
References[i] Ullrich, A. et al., 2019. Exploring the gender dimensions of problems and needs of patients receiving specialist palliative care in a German palliative care unit- the perspectives of patients and healthcare professionals. BMC Palliative Care [ii] Gott, M., Morgan, T., Williams, L., 2020. Gender and Palliative Care: A Call to Arms. SAGE Publications. [iii] Public Attitudes to Death And Dying in the UK Marie Curie Palliative Care Research Centre, Division of Population Medicine, Cardiff University School of Medicine. October 2021. [iv] Ullrich, A. et al., 2019. Exploring the gender dimensions of problems and needs of patients receiving specialist palliative care in a German palliative care unit- the perspectives of patients and healthcare professionals. BMC Palliative Care. [v] Fillingim, R. et al., 2008. Sex, Gender and Pain; a review of recent clinical and experimental findings. Science Direct [vi] Husain, A. et al., 2007. Women experience higher levels of fatigue at the end of life: a longitudinal home palliative care study. PubMed. [vii] Gott, M., Morgan, T., Williams, L., 2020. Gender and Palliative Care: A Call to Arms. SAGE Publications. [viii] Ullrich, A. et al., 2019. Exploring the gender dimensions of problems and needs of patients receiving specialist palliative care in a German palliative care unit- the perspectives of patients and healthcare professionals. BMC Palliative Care [ix] Fahad Saeed, M.D. et al., 2018. Preference for Palliative Care in Cancer Patients: Are Men and Women Alike? Journal of Pain and Symptom Management, 56(1). [x] Miesfeldt S, Murray K, Lucas L, et al., 2012. Association of age, gender, and race with intensity of end-of-life care for Medicare beneficiaries with cancer. Journal of Palliative Medicine. 15. [xi] Bookwala J, Coppola K, Fagerlin A, et al., 2001. Gender differences in older adults’ preferences for life-sustaining medical treatments and end-of-life values. Death Studies. 25. [xii] Ullrich, A. et al., 2019. Exploring the gender dimensions of problems and needs of patients receiving specialist palliative care in a German palliative care unit- the perspectives of patients and healthcare professionals. BMC Palliative Care [xiii] Ibid. [xiv] Ibid. [xv] Marie Curie, 2022. Better End of Life Report.