Guest Blog: Marie Curie calls for more research and care provision “through sex and gender lens” for dying people

On International Day of Action for Women’s Health, a leading end of life charity is backing a new campaign calling for more equity in women’s healthcare.

Marie Curie is part of the Women’s Health Wales initiative of over 60 organisations* which has drafted a proposed ‘Quality Statement’ for the health of women, girls, and those assigned female at birth.

Quality statements are Welsh Government’s new high-level policy intentions for specific areas of health in Wales. A dedicated End of Life Care Quality Statement is due to be published soon, but Marie Curie has also secured an end of life care appendix in the proposed Women’s Health Wales Quality Statement.

As part of its appendix, the charity – which provides support on all aspects of dying, death and bereavement – is calling for more research on palliative and end of life care through a sex and gender lens and a commitment to ensure that sex and gender is considered when palliative and end of life care is delivered in Wales.

Marie Curie Policy and Public Affairs Manager for Wales, Bethan Edwards, said: “Research shows that some women can face disproportionate challenges when it comes to end of life care and support – whether this is receiving care themselves or providing care to others. These challenges intersect with a variety of other potential barriers to equality, including but not limited to, if you are a Black, Asian or minority ethnic woman, a disabled woman, within the LGBTQIA+ community, or living in poverty.

“Although research looking specifically at the Welsh context does not exist, international evidence shows that there can be sex and gender differences in reported symptom burden and pain management[i]^{,[ii],[iii],[iv]} and preferences and experience of treatment at end of life [v]^{,[vi],[vii],[viii].} Women can also be less likely to state a preference for receiving care and/or dying at home, and research shows that this is sometimes because women fear being a burden on their families[ix].”

Evidence shows women typically have a longer life expectancy than men and live more years with a disability[x]. Coupled with estimates that demand for palliative care is set to increase by 42% in England and Wales by 2040[xi], and dementia deaths – a leading cause of death for women[xii] – are set to be more than three times higher than the current mortality rate[xiii], the charity says research now is more urgent than ever.

“The above projections point towards an increasing number of women in need of palliative and end of life care in the near future, however many still face disproportionate challenges in accessing the care they need,” adds Bethan.

“More work must be done now to understand where and why this inequity may be taking place – and more importantly, to ensure that women can access the support they want, in the place they want – for a better end of life for all.

We need a Quality Statement in place imminently to address these issues and end of life care needs to be a concrete part of this.”

Dee Montague, Engagement Officer at Fair Treatment for Women of Wales, cared for her mother at end of life and said her ability to choose her place of death – a hospice – led to a much more peaceful death than her brother’s.

Maureen – or Moe – died in 2014, while her son Kevin, who died aged 26 following a diagnosis of Ewing’s Sarcoma, in A&E in 2001.

Talking about her mum’s decision to go to a hospice to die, Dee said: “I think she sort of saw it as a nice place to go, but also I think she knew enough about death herself that she didn’t want that if there were complications and things like that, that it would be made ultra difficult for us.

“I think she had seen enough while working in care and things like that, all of these people’s determination that they were gonna die at home, and actually the impact that can have a lot of the time on families. So I think she just didn’t want us to have all of that hassle.

“In the end, she did have a peaceful death, but it was because she was in the hospice, it was because she was where she wanted to be.”

Marie Curie is working with University College London to explore whether there are gender differences in end of life care when it comes to the patients that Marie Curie support in Wales. It looks specifically at preferences of place of care and death, as well as achieved place of care and death.

Notes to editor

For further information please contact Rachel Moses-Lloyd, Marie Curie Senior Media and PR Officer – Wales, Rachel.moses-lloyd@mariecurie.org.uk 07730 617843/ Marie Curie Press Office: media@mariecurie.org.uk / 0845 073 8699.

Key recommendations of the plan include improved access to specialist services, improved data collection, support for sustainable co-production of services, and enhanced training for health and care professionals.

You can find out more about the report and the coalition’s work at https://www.ftww.org.uk/womenshealthwales/

About Marie Curie
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.

Please note we are ‘Marie Curie’ (not ‘Marie Curie Cancer Care’)
mariecurie.org.uk
facebook.com/MarieCurieWales
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*Organisations involved

• Fair Treatment for the Women of Wales (FTWW)
• British Heart Foundation Cymru
• Long Covid Wales
• Jo’s Cervical Cancer Trust
• RareQoL
• Royal College of Obstetricians & Gynaecologists
• Endometriosis UK
• Ethnic Minority Women in Welsh Healthcare (EMWWH)
• Royal College of Physicians
• The Ehlers-Danlos Support UK (EDS)
• The Royal College of Surgeons of Edinburgh
• Race Equality First
• The Faculty of Sexual and Reproductive Healthcare of the Royal College of Obstetricians and Gynaecologists (FSRH)
• WAMES
• Autistic UK
• National Federation of Women’s Institutes
• Lupus UK
• Campaign Against Painful Hysteroscopy
• Fertility Network UK
• Asthma + Lung UK
• Royal College of Psychiatrists
• FibroSupport Wales
• Fibromyalgia Action UK
• WEN Wales
• The Autistic Women’s Empowerment Project
• Menopause Support
• British Association of Dermatologists
• Compasssionate Cymru
• National Autistic Society Cymru
• Independent Healthare Providers Network Wales
• Samaritans Cymru
• Verity
• Hypermobility Syndroms Assocation (HMSA)
• Royal College of Nursing Wales
• Marie Curie
• Disability Wales
• IAPMD
• Mind Cymru
• Tommy’s
• Brook
• Learning Disability Wales
• Beat
• Race Council Cymru
• The Royal College of Speech and Language Therapists (RCSLT)
• British Pregnancy Advisory Service (BPAS)

More than 13 individual patient advocates also participated.

[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] Fillingim, R. et al., 2008. Sex, Gender and Pain; a review of recent clinical and experimental findings. Science Direct

[iii] Husain, A. et al., 2007. Women experience higher levels of fatigue at the end of life: a longitudinal home palliative care study. PubMed.

[iv] Gott, M., Morgan, T., Williams, L., 2020. Gender and Palliative Care: A Call to Arms. SAGE Publications.

[v] 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

[vi] 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).

[vii] 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.

[viii] 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.

[ix] Gott, M., Morgan, T., Williams, L., 2020. Gender and Palliative Care: A Call to Arms. SAGE Publications

[x] ONS defines ‘years with disability’ as the number of years that a person lives with restricted activity as a result of a long-lasting physical or mental health condition.

[xi] Etkind, S., Bone, A. et al, ‘How many people will need palliative care in 2040? Past trends, future projections and implications for services’, BMC Medicine, 15 (102), 2017

[xii] ONS, 2019. Deaths registered in England and Wales: 2019

[xiii] Etkind, S., Bone, A. et al, ‘How many people will need palliative care in 2040? Past trends, future projections and implications for services’, BMC Medicine, 15 (102), 2017