Posted on November 21, 2019 at 12:00 PM
by Keisha Ray, Ph.D.
Right now in America there is a growing movement to help Americans die well. Organizations like Life Matters Media and Death Over Dinner aim to help people with end of life decision-making and to help people facilitate conversations about death with their families, friends, and communities. But in this dying well movement there is some controversy about who gets to participate and how they ought to participate. Death doulas or death midwives offer much of the same care at the end of a person’s life as birthing doulas or midwives offer women and babies at the beginning of babies’ lives. Death doulas are typically women and provide non-medical aide, guidance, comfort, and end of life planning services (e.g wills) to dying people and their families. Death doulas are gaining more mainstream attention, although in some communities like in communities of Indigenous people or African (and African American) people the role of death doulas is ancient and has been a constant and steadfast part of their culture. But similar to the struggles that we see between birthing doulas, midwives, and birthing centers and hospitals and the medicalization of birth there is a tension between tradition and modernity.
In regards to death doulas, there is one side who wants to preserve its roots as a free service performed in communities, often in communities of color for other community members, rooted in cultural customs and beliefs about death. Death doulas are typically trained by other death doulas in the community so that training becomes something passed down through the generations. The other side, however, wants to make the role of death doulas more formalized with training courses, regulatory agencies, and fees. This controversy like so many others in health and health care is about who gets a seat at the table, where do we draw the line between cultural appropriation and bringing beneficial services to more people, and the benefits and consequences of monetizing a health service that does not have to be a health care service.
There is no official training for death doulas. There is also no recognized state-wide or national regulatory agency. There are, however, groups that train death doulas, usually led by medical professionals like nurses or social workers who have experience with death in the hospital setting but are unsatisfied with the impersonal nature of how we typically die in America. Organizations like The Doula Program to Accompany and Comfort in New York, The International End of Life Doula Association (INELDA), or Lifespan Doulas and other groups train people to become death doulas.
But what I will call community trained death doulas are suspicious of organizations who seek to train death doulas. They see it as a step towards removing the communal aspects and the community or tribal customs that are associated with death and dying. For instance, many community trained death doulas do not accept payment for their services. They feel called to do it as a service to their community and to their family and friends, particularly those who could otherwise not afford other end of life services. The worry with professionalizing and charging fees for death doula services, as I see it, is that the very nature of being a death doula will be fundamentally changed. The goal of making dying less clinical and removing the fear and stigma around death is exactly what will become commonplace if death doulas are trained in the classroom and not in the community and money becomes the driving force for the services.
A good example of how organization trained death doulas are deviating from the norms established by community trained death doulas is that the organization The Doula Program to Accompany and Comfort has claimed that they are interested in being around during the final stage of life, but not necessarily being present during the actual moment a person dies. This is very different than the actions that community trained death doulas provide for families. Since they see being a death doula as a service for the dying as well as for the living, they are present for the moment of death as a way of offering services to the family and friends as well.
Another issue that community trained death doulas seem to take with the professionalization of death doulas is white-washing or appropriation of the services. Death doula Vivette Jefferies-Logan likens what is happening to death doulas to what happened with the practice of yoga. From her point of view yoga, an Indian practice of spirituality has been co-opted from the Indian people and dominated, monetized, and made mainstream by mostly white instructors who often do not teach the spirituality aspects of yoga. The fear is that the groups who are already seeking to mainstream death doulas and take death doulas from communities of color and make them mainstream will co-opt death doulas while only teaching a fraction of the practice and not its spiritual, communal, and ancestral roots.
Community trained death doulas are essentially afraid of something else being taken from people of color leaving behind a distorted, not culturally rooted version of death doulas behind. They are afraid of being pushed out of a practice that they created, practice, and bring to their communities who are so often ignored by health care or rightfully fearful of health care. I think these are worthwhile concerns because we have seen it before. Black birthing doulas were discredited and even criminalized by health care in an attempt to medicalize births. From hair styles to clothing, many aspects of black and Indigenous culture are co-opted by mainstream culture (as seen with traditional Indigenous dress appearing on fashion runways). White people are then praised for their stylish ingenuity and the people of color who created the fashion are villainized for wearing traditional styles and not assimilating to mainstream culture.
On the other hand, it is also a noble goal to bring the benefits of death doulas to anyone who wants one. I do not think death doulas should only be for people of African descent or Indigenous peoples. One solution is to encourage and empower community trained death doulas to lead the death doula revolution, as well as compensate them for their time. Allow community trained doulas to teach others how to be death doulas rather than pushing them out of the services. Collaborate and learn from community trained death doulas and allow nurses, social workers, and other health care professionals to share their expertise as well so that the final product is a medically and culturally informed service.
Perhaps the bigger issue is how we die in America. If people die in a hospital setting policymakers may feel more comfortable with death doulas who have some sort of certification or accreditation. But as the dying well movement has shown us, we have medicalized death and many deaths do not need to occur in a hospital. Perhaps if more people died in their homes, or in the homes of their loved ones like what was once commonplace, the struggle between community trained death doulas and the commercialization of death doulas wouldn’t exist. Perhaps if death wasn’t medicalized the cultural, spiritual, and community based practice could remain in any community and we might all be called on one day to be our family and friends’ death doulas.