Ed: As many of you will know #pledgeforparity was the theme for this year’s International Women’s Day on the 8th of March. But to be able to make such a pledge meaningful first we we need to understand where inequality resides. This important work from Tessa Morgan, Merryn Gott, and Lisa Williams begins to explore how questions of gender equity relate to palliative care.
Dying at home is widely celebrated as the pinnacle of a ‘good death’. It is therefore unsurprising that governments internationally are framing current moves to increase the numbers of people dying at home as a ‘win-win’ situation. People get what they want at the end of their lives and the health system saves money. Result! However, is it really that straightforward? Increasingly, our research group has been thinking about the unpaid workforce we rely on to enact home dying. Who are they? How does this caring work impact upon them physically, psychologically, socially and financially? Why are they so invisible?
It was these questions that drew us into thinking about the gendered nature of palliative care. For this workforce is overwhelmingly made up of women, predominantly older women, whose contribution is overlooked, we would argue, largely because such caring tasks are regarded societally as women’s work; as a normal and natural part of women’s lives in line with their caring, kind, and maternal nature.
When we looked into what little has actually been published on this topic, we found that women who were providing care to a family member at end of life were suffering from a vast array of physical and mental health problems directly resulting from their caring roles. We found that women continue to shoulder more of the caring burden themselves without asking for formal assistance, even when they themselves were in poor health. What’s more, because societies across the Western world are ageing rapidly, and women consistently outlive men, this situation is only going to get worse.
It’s also important to look at what kinds of care women are providing. Women are more likely to provide intensive personal care, and are twice as likely to provide toiletry assistance as men. Conversely, men are more likely to treat caring as a job and welcome extra support in all aspects of care.
Overwhelmingly, this disparity both in the number of women caring than men, and in the differing nature of this care, results from women’s adherence to gendered expectations, from both their families and society in general, that this is something they must do.
It may seem like we’ve painted a fairly gloomy picture, but what is far more concerning is that the picture remains incomplete. Research into palliative care from a gendered perspective is sorely needed if we are ever going to formulate effective strategies to mitigate the impacts – both mental and physical – that women disproportionately experience when providing palliative care.
Its importance is greater still if we ever want to fully understand palliative care as a whole for it is overwhelming a women’s world; as much in the ‘informal’ home-setting as it is the ‘formal’ hospital, hospice and aged residential care sector. Women comprise the majority of palliative care professionals, carers and patients and it is about time we start considering how ideas of gender – the expectations shaping ideas of femininity and masculinity – pervade all aspects of end of life care.
Tessa Morgan, Merryn Gott and Lisa Williams
Te Arai Palliative Care Group, School of Nursing, University of Auckland
For a link to our recently published article on gender and family care-giving at end of life go to: http://www.ncbi.nlm.nih.gov/pubmed/26814213 or https://www.researchgate.net/publication/292072132_Gender_and_family_caregiving_at_the_end-of-life_in_the_context_of_old_age_A_systematic_review
Also see Part 2 of the Gender in Caring series, End of life caring a women’s workforce
Ed: We thank the authors for sharing this timely and important work. We are also excited to announce that we will be working with the authors on a series of blogs exploring gender issues and palliative care.
If anyone else in the palliverse has work, ideas or conversations that need reach our community then feel free to get in contact with us.