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.
Do we understand culture’s effect on care roles?
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.
Image: Roy Lichtenstein. Nurse (1964) via Christie’s CC
palliverse.com 
I am a palliative care doctor and lead multidisciplinary team meetings. I caught myself asking on more than one occasion when planning for discharge home, “Does Mrs X have any daughters?” Really a shockingly sexist thing to say…..
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I wonder if we ought to discuss this by first trying to work out why people wish to die at home and the differences between those people and those who feel more secure being in a hospital. Is there a gender difference here? Most people try to assist their loved ones in the last stages to provide chosen care. Some health professionals I knew have opted to be in hospital.
But as an older person who did look after my bedridden husband at home for six months before he died eight years ago, I have to say that the assistance I was able to access dealt with the easier parts of the job and not the more physically difficult, due, of course, to OHS issues. I did end up with pneumonia after he died. Perhaps just a co-incidence!
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Palliative care from a gendered perspective. Yes, that is the perspective of this study. Yes, there are gender perceptions regarding the roles of women in palliative care. Yes, it is important to understand the impact that palliative care work has on people who care for a relative dying at home.
But for me, this study raises two red flags. First is the assumption (the Editor’s) that gender differences in caring roles derive from “questions of gender equity”. Second is the focus chosen for the study. Women, especially older women, do this work more often. “Women are more likely to provide intensive personal care, and are twice as likely to provide toiletry assistance as men.” And it is “only going to get worse”. The study wants to mitigate the impacts on people providing palliative care at home. So what would be wrong with studying all of those people?
“Te aria” is Maori for “the veil”. This is a veil that should be lifted.
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Dear Glen,
Thanks so much for your comments about this contribution which I was the editor for.
In regards to your comments about the editorial introduction I can see your point. This blog (and the related systematic review) explores the relationship between gender, care roles and carer outcomes in palliative care. You raise the important point that inequality is not synonymous with inequity, or that differences in gender roles can not be assumed to be unfair. That said both this blog and the review highlight the substantial impacts that gender can been seen to have on who and why people provide care in a palliative context, and how that impacts on the carer. As they illustrate these roles are deeply assumed within our community. Given that, viewing these pieces as exploring or questioning the equity of these assumptions seems reasonable to me.
Yet again thanks for engaging in the dialogue.
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What carers have in common is vastly more important than their gender differences. We are typically not qualified for our tasks and we tip ourselves in, uneducated and unprepared, unpaid and often inadequately supported. We take damage and we suffer casualties and we grieve losses. Those are the subjects that should be the priorities for study and for mitigation.
The support of carers at home is such a worthy subject. What a pity the Te Aria study fails to match it.
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Hi Glen,
I agree with you that it would be really interesting to find out more about the palliative care experience of carers who identify with other genders. Are you aware of any research in this area?
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Hi Glen,
Thank you for your comments in relation to our blog on the significance of gender and family caregiving. We absolutely agree that family carers, regardless of their sex, need more support for the very challenging job of caring for someone. As you very eloquently point out, caring is hard, undervalued, underpaid and badly supported. It is just such conditions which make it a gendered issue. Traditionally, care work has been defined as female and therefore devalued. No wonder you are frustrated, you have found yourself being treated like a woman in a caregiving role. We urge you to continue to voice your frustrations and demand better support for caregivers, so that no matter whether they are men or women, they will get the help they need.
Given your experience, you may be interested in learning more about how societal expectations of femininity and masculinity, which the term gender refers to, plays a significant role in shaping caregiving experiences. For example, studies show that women are far more likely to provide personal care for their family member such as washing and toileting than men, whereas men providing care are far more likely to participate in instrumental care tasks such as providing transport; thus mirroring gendered stereotypes of women as nurturers and men as providers. The literature also overwhelmingly shows that women carers experience poorer mental and physical health compared to men and non-carers, which we found in part related to high expectations from family members for women to provide care.
As a result we recommend supporting more men to provide end of life care in order to challenge the cultural notion that aligns caring with the feminine ideal. Overall, by urging palliative care research to focus on gender, we are challenging the discipline to acknowledge that carers are by no means a homogenous group while also showing that deeply held societal beliefs can have significant ramifications on family caregiver’s everyday lives.
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