End-of-life care is a feminist issue

Women disproportionately bear the burden of our squeamishness about death and dying

Published September 25, 2009 3:26PM (EDT)

"How we're born and how we birth are obvious feminist issues," writes Jill Filipovic at Feministe. "But it's time we expand that list to include how we pass on, and how we treat the aging and dying among us." Building on a New York Times blog post by Timothy Egan, which looks at how many healthcare dollars are spent on terminally ill patients who would rather die quietly at home, Filipovic makes a strong argument that end-of-life care should be regarded in part as a women's issue. 

Egan spoke to 62-year-old doctor John Kitzhaber, whose 88-year-old mother chose to refuse cancer treatment, only to find that "Medicare would pay hundreds of thousands of dollars for endless hospital procedures and tests but would not pay $18 an hour for a non-hospice care giver" in the home. Says Kitzhaber, "The fundamental problem is that one percent of the population accounts for 35 percent of health care spending. So the big question is not how we pay for health care, but what are we buying."

Filipovic asks another big question arising from that: What happens when insurance won't cover at-home care for terminally ill patients? Answer: Women take it on for little or no money. "Female family members often take on a disproportionate amount of the care work for aging relatives. Nursing home employees and hospice workers are disproportionately female. Now that more women are working, middle and upper-class women often have less time to care for elderly relatives than they might have a generation ago; instead of sharing that work with male partners, it gets put on lower-income women who do care work professionally." As with so many of the "caring professions," this female-dominated work is chronically undervalued.

Furthermore, says Filipovic, much of the rhetoric surrounding end-of-life care should be familiar to feminists, specifically: "[T]he shrill black-and-white morality of those who wield terms like 'life' and 'death' as rhetorical swords instead of addressing life, death and the in-between with the respect, nuance and complexity they demand." And that nuance-free thinking drives the panic over what healthcare reform might pay for -- No funding for abortion! No funding for "death panels!" Screaming about the grave injustice of hypothetically having to pay for stuff you don't like (real or imagined) obscures the fact that if we reduced healthcare spending on terminally ill people who would rather go home and die, we might be able to help more women afford pregnancy and childbirth, for instance. (Or at least contraception.) Which might very well lead to fewer abortions, among other things.

"For reasons both cynical and clinical," writes Egan, "the American political debate on health care treats end-of-life care like a contagion -- an unspeakable one at that." If we want to reduce wasted medical spending and improve people's quality of life -- right up until the end of it -- we must learn to speak openly about death and dying, and seriously consider all the grey areas that bring individuals to different conclusions about how they'd prefer to finish their lives. Until we do, the physical, emotional and financial burdens of our society's childish refusal to regard death as a natural part of life will continue to fall disproportionately on women.


By Kate Harding

Kate Harding is the author of Asking For It: The Alarming Rise of Rape Culture--and What We Can Do About It, available from Da Capo Press in August 2015. Previously, she collaborated with Anna Holmes, Amanda Hess, and a cast of thousands on The Book of Jezebel, and with Marianne Kirby on Lessons from the Fat-o-Sphere. You might also remember her as the founding editor of Shapely Prose (2007-2010). Kate's essays have appeared in the anthologies Madonna & Me, Yes Means Yes, Feed Me, and Airmail: Women of Letters. She holds an M.F.A. in fiction from Vermont College of Fine Arts and a B.A. in English from University of Toronto, and is currently at work on a Ph.D. in creative writing from Bath Spa University

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