Research Findings

When medical care dehumanizes dying people, “heart” is valuable commodity

September 22, 2022

“They squeeze the spirit and the heart out of everything they touch,” Tracy said.  She was referring to mainstream health care. “Not every hospice nurse has that heart, and not every doctor has that heart, but I do.”

Tracy is an end-of-life activist. A former oncology and hospice nurse, she wants to change how we care for people who are dying. Her vision is modeled after the natural birth movement, and she describes herself as a death midwife. She owns a business that teaches and certifies end-of-life doulas.         

As a nurse, Tracy was troubled by how many people suffer needlessly at the end of their lives.  Palliative care worked wonders, but it was usually too little, too late. “It pained me to see that people could come onto hospice, and within a day or two most of the time, we could get them comfortable,” she said. “They had been suffering for months and years.”  

A 2015 report from the Institute of Medicine confirms her impressions. Americans die badly and expensively, subject to difficult medical interventions intended to cure but with limited access to palliative care. We spend our final months in and out of hospitals, too often at the mercy of a health care system that does not take account of our needs and makes impossible demands of our loved ones.

Death midwives and end-of-life doulas are emerging occupations meant to address these problems. They might assist someone in the creation of a living will, help family caregivers to communicate with doctors and nurses, or sit vigil in the final hours of a person’s life. Others focus on after-death care, offering home funeral guidance and bereavement support. Their work is multifaceted, but its purpose is singular: to prioritize the comfort of dying people and their loved ones and to help meet their non-medical needs.   

For a recently published article, I interviewed Tracy and 18 other pioneers in this field to learn about the creation of these new occupations in the United States and Canada. I also took two courses in end-of-life doula care and a course in death midwifery to better understand what these jobs entail. As I listened to end-of-life activists and educators talk about their work, I became interested in a particular dilemma: how do death midwives and end-of-life doulas establish their labor as necessary, legitimate, and worthy of remuneration when, historically, that work has been invisible and undervalued?

Gender is at the center of this dilemma. Historically, we have expected wives and daughters to supplement the work of healthcare professionals. What is more, we have expected them to do so as an uncompensated labor of love. In the United States, hospice became a standard option precisely because it was a cost-saving measure that relied on women’s unpaid care for ailing family members. Death midwives and end-of-life doulas are emerging, in part, as a paid alternative. 

They are not the only workers seeking to commodify labor that people have long expected women to do for free. Most jobs in the burgeoning personal service industry require empathy, social and emotional attunement, and other skills that women are thought to naturally possess.

Commodifying those skills is a tricky endeavor. Rachel Sherman finds that it leads personal concierges to talk about their jobs in gender-neutral ways, strategically distancing themselves from wives and mothers. Molly George observes that when life coaches rely on feminine stereotypes to describe their labor, it threatens to undermine their bids for professional legitimacy.

These previous studies highlight how feminine associations pose a risk for workers seeking to commodify women’s unpaid labor.  Death midwives and end-of-life doulas complicate our understanding of this relationship. 

As indicated by their connection to the natural birth movement, these pioneers actively embrace their occupation’s feminine identity. Many harken to the bedside vigils that women kept for centuries before dying became a medical event. The goal, some argue, is to reskill people to care for their own dying and dead.

These practitioners position themselves in contrast with medical professionals and, like Tracy, insist that end-of-life doulas and death midwives are valuable because they have heart. Some inadvertently naturalize the association between femininity and non-medical care by asserting that practitioners in their field (the vast majority of whom are women) are innately compassionate and empathetic. 

This rhetoric has not always served them.  In 2016, The College of Midwives in British Columbia issued a cease-and-desist letter to a Canadian collective of death midwives on the grounds that “midwifery” refers to the formally regulated profession of birth midwifery. Legitimacy, they seemed to say, is a matter of training and licensing, not heart.

Death midwives and end-of-life doulas are aware of the need to establish credibility. All nineteen of the pioneers I interviewed offer training programs, for example, and fourteen of these grant certificates of completion. These strategies increase legitimacy. They also generate tensions that are difficult to resolve.     

Should training be necessary in order to practice death midwifery or end-of-life doula care? Participants usually equivocate. On the one hand, many of them subscribe to the notion that caring for the dying and dead is a natural human practice that requires experience but not formal education. On the other hand, downplaying the importance of training would have undercut the value of their own courses, which students pay hundreds of dollars to take.   

If a family caregiver has experience in end-of-life care, do they still need to hire a death midwife or end-of-life doula to help navigate the loved one’s dying?  This, too, was a difficult question.  Even practitioners who want to empower people to care for their own dying and dead were reluctant to say that their services are unnecessary.  The value of a third party, some argued, is in the emotional neutrality that family caregivers cannot possibly have.

What should be the role of certificates? A few educators thought that they could be meaningful markers of competence, but most described them as window dressing. Certificates are a perk for students who want to build professional personas, they explained, but does a certificate mean that its possessor is ready to practice? Not necessarily.

The picture that emerges is that of a balancing act.  Death midwives and end-of-life doulas are holding fast to a feminine occupational identity, even as they cautiously embrace the historically masculine project of professionalization. This poses challenges, but it does not altogether stymie their efforts to secure occupational legitimacy.

In a system of care that routinely dehumanizes dying people, “heart” might be a very valuable commodity, indeed.

If the goal of death midwives and end-of-life doulas is to reduce the suffering of dying people and their loved ones, professionalization presents a different kind of liability. Hospice care began in the 1970s as a radical, grassroots movement. Its pioneers sought to change a system that met the demands of medical institutions at the expense of dying people’s needs. Becoming a mainstream enterprise forced hospice to compromise many of its highest ideals. 

The occupational pioneers I interviewed are part of a contemporary death-positive movement premised on the same vision that led to the development of hospice fifty years ago. What compromises will further professionalization entail? How will death midwives and end-of-life doulas ensure that heart remains at the center of their enterprise, even as heart becomes a commodity? Their work going forward will no doubt provide an interesting window onto the relationship between gender, care work, and occupational legitimacy.

Read more

Ara Francis. “Gender and Legitimacy in Personal Service Occupations: The Case of End-of-Life Doulas and Death Midwives” in Journal of Contemporary Ethnography 2022.

image: Fa Barboza via Unsplash

No Comments

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.