Women and end-of-life care

Written by: Emma Nicolaysen, W*SS WILD Intern

Over the past fifteen years, an increasing amount of attention has been paid to the role of women in end-of-life care; specifically, how the healthcare system treats women who have reached the stage of needing care or those who actively provide it. Past research has shown that there is a “systematic and largely unconscious neglect of gender in palliative care research, practice, and policy” (Gott et al., 2020) which policymakers must take action on. Caregiving, hospice, and end-of-life patient experiences can be uncomfortable topics that are often avoided due to underlying themes of death and dying that percolate through them.  

However, what is unavoidable and widely understood in research circles is that the burden and expectations of being self-sacrificing, but also patient and proficient in the space of caregiving, most often fall on women. Further, approaches towards the management of death and the treatment of the dying are often biased towards a system that will only “serve the interests of those sectors of society with most power and further marginalise the interests of those with least” (Gott et al., 2020). However, in order to fully understand this relationship, it is necessary to explore the experiences of women at both the front and back ends of caregiving: those who are cared for, and those who are expected to provide the care. 

To begin, we can focus on women who provide care. Long-established research has highlighted how familial caregiving— a practice that takes place in the often-gendered environment of the home— is most often seen as the responsibility of the female members of the family (Sutherland et al., 2016). While men may be expected to provide for their family through their income and job in society, women are similarly expected to provide for the family by caring for the individuals who live within the walls of the home (England, 2010). However, the private nature of the home makes these gendered caregiving practices, in large part, hidden, therefore limiting the public recognition or support a woman may receive for her work in caring for ailing family members (Clow & Kemp, 2012). With little recognition but no fewer expectations to continue serving their family, women can internalize pressures to care for their family and transition towards the misbelief that it is their best purpose in society.  

However, caregiving can also enact physical and emotional tolls on these women in positions of care. Caregivers may develop a chronic condition or depression while caring for a family member, but often are unable to address these conditions due to the lack of time and resources available to them— time and resources that are being funneled towards the care recipient (Chakraborty & Vibhute, 2023). The take-home message here is that women who serve as caregivers find their physical and emotional needs unmet. When coupled with the gendered and unyielding expectations to provide care and nurture their families, women provide the brunt of care work while receiving little to no recognition and financial support. 

Next, we turn our attention to women in need of care. Here, it’s important to consider how a woman’s life experiences, income, and general health may impact her state of being as she enters the realm of the healthcare system. First, she will likely have less finances at-hand compared to men (Wong & Phillips, 2023), and her longer lifespan compared to men may limit the familial help available to her (Just et al., 2016). Now, not only are there fewer caregivers willing and able to help her, but the resources that these caregivers may have provided are unobtainable. Additionally, the patient herself may be unwilling to accept care from family members. Wong & Phillips identify that women “are more likely to accept formal care and dying in an institution” than accept care in the home environment in order to limit the burden they feel may be placed on family members by remaining at home (2023). In short, the nature of dying is commonly gendered, primarily affecting women on both the care receiving and giving sides of healthcare. 

Overall, examining the gendered dynamics of end-of-life care reveals a complex, often invisible system that places disproportionate expectations and burdens on women—both as caregivers and as care recipients. Women are expected to provide care with little recognition, even as their own health and well-being may deteriorate in the process. Later in life, when they themselves need care, they often face limited resources and support, compounded by societal and personal pressures to avoid burdening others.  

To address these inequities, greater awareness, policy change, and structural support are needed to ensure that women are not overlooked at either end of the caregiving spectrum. Investing in caregiver support programs and financial assistance can help alleviate the economic and emotional strain placed on women in caregiving roles. Incorporating gender-aware training into healthcare systems can improve the quality of care women receive as patients. Finally, research and policymaking must center women’s voices and lived experiences to create a more equitable and compassionate model of end-of-life care. 

References 

Chakraborty, R., Jana, A., & Vibhute, V. M. (2023). Caregiving: a risk factor of poor health and depression among informal caregivers in India- A comparative analysis. BMC public health, 23(1), 42. https://doi.org/10.1186/s12889-022-14880-5 

Clow, B., & Kemp, K. (2012). Caring at home in Canada. Thinking women and health care reform in Canada, 139-166 

England, K. (2010). Home, work and the shifting geographies of care. Ethics, Place and Environment, 13(2), 131-150. 

Gott, M., Morgan, T., & Williams, L. (2020). Gender and palliative care: a call to arms. Palliative care and social practice, 14, 2632352420957997. https://doi.org/10.1177/2632352420957997 

Just, E., Casarett, D. J., Asch, D. A., Dai, D., & Feudtner, C. (2016). Differences in Terminal Hospitalization Care Between U.S. Men and Women. Journal of pain and symptom management, 52(2), 205–211. https://doi.org/10.1016/j.jpainsymman.2016.01.013 

Sutherland, N., Ward-Griffin, C., McWilliam, C., & Stajduhar, K. (2016). Gendered Processes in Hospice Palliative Home Care for Seniors With Cancer and Their Family Caregivers. Qualitative health research, 26(7), 907–920. https://doi.org/10.1177/1049732315609571 

Wong, A. D., & Phillips, S. P. (2023). Gender Disparities in End of Life Care: A Scoping Review. Journal of palliative care, 38(1), 78–96. https://doi.org/10.1177/08258597221120707