Ethicists make case for doulas in end-of-life care for most vulnerable

March 1, 2022


In the article "Unbefriended, Uninvited: How End-of-Life Doulas Can Address Ethical and Procedural Gaps for Unrepresented Patients and Ensure Equal Access to the 'Good Death,'" ethicists Adele Flaherty and Anna Meurer make a case for formalizing the role of end-of-life doulas in the provision of optimal ethical health care for unrepresented patients and for patients who are wards of the court and under public guardianships due to mental, physical or developmental disability. Unrepresented patients are individuals who may not be capable of articulating health care decisions, and they have no one with the legal authority to speak on their behalf.


Rerigging the health care infrastructure to make a place for doulas in the end stage care of these vulnerable patients could be beneficial for patients, providers and health systems, the authors maintain. But before that can happen, the authors say, much work is needed in defining the training, the scope of practice and reimbursement structure for the supportive services of doulas. Although some death doulas may be palliative care nurses who can provide clinical care under their nursing license, doulas are not licensed and do not have a clinical role in patient care. (Some professional organizations offer certifications for end-of-life doulas.)


Nevertheless, "As quasi-independent, non-medical members of the health care team, (doulas) provide a balancing, advocating voice on behalf of the patient, and may also help reduce inappropriate treatment, delays in care, and the overburdening of the public guardianship system," Flaherty and Meurer write in their article published online by the journal Clinical Ethics in November. Flaherty has a PhD in health care ethics from Duquesne University, where she is an adjunct instructor in the McAnulty College and Graduate School of Liberal Arts and the School of Nursing. Meurer is the program manager for education for the Center for Bioethics at The Ohio State University in Columbus. She is pursuing a PhD in health care ethics at Duquesne.

The pair talked with Catholic Health World about their research and what they hope comes next. The interview has been edited for length and clarity.

Is there a growing demand for the services of end-of-life doulas?

Meurer: There is evidence that interest is increasing in the general population. There's an increase of articles, there's increase in conversations on Twitter and on death forums.

The International End of Life Doula Association and the National End-of-Life Doula Alliance have reported increases in membership and they're having a higher demand for (training) events.

The International End of Life Doula Association says doulas can help a dying person explore the meaning of their life and understand the process of dying. They can keep vigil at a deathbed. What other specific services do death doulas provide?

Meurer: Their services can take myriad forms. They can provide psychological and emotional support, and companionship. When a doula's working as a bridge or a translator from the medical team, they can contextualize what's happening and then tie that into the patient's and the family's values.

Flaherty: In his really great book Finding Peace at the End of Life: A Death Doula's Guide for Families and Caregivers, Henry Fersko-Weiss, the founder and president of the International End of Life Doula Association, identifies three stages of the services that an end-of-life doula can provide. In the planning stage, doulas can assist with writing advance directives, help set up practical household support services, and facilitate communication with family members and friends. In the second stage, the dying process, doulas can provide support to a patient and their family, running errands, helping with personal care — whatever is needed. In the third stage, they can help families navigate a scary and chaotic time, organize home wakes or funerals and facilitate healing and healthy grieving long after the client's death.

How is the work of a doula different than what can be provided by a comprehensive hospice program that addresses mental and physical suffering and the resolution of spiritual suffering?

Flaherty: The allocation of time is an important distinction. Hospice teams, including volunteers, hindered by caseload and requirements, can provide only a few hours a week of face-to-face time for patient care.

Death doulas can provide the respite needed for families and caregivers overwhelmed emotionally, mentally and physically by the round-the-clock care needed once a patient begins to transition. Such services include assisting with activities of daily living that are out of the purview of hospice care.

While there are several organizations which have developed competencies and training programs for end-of-life doulas, there is currently no government or professional oversight or certification for them. What training do professional doulas need?

Flaherty: There are so many different ways that people approach and experience death. I do think motivational interviewing and mediation are essential skills. I also think cultural competency and understanding, both the history of death and cultural approaches towards death rituals, are very key. Beyond that, there's a lot of room for input from people who are already doing end-of-life care, palliative care and hospice, to say: "These are things we'd like to see" as part of the skill set.

In those places where doulas are in use, who pays for their services?

Flaherty: It varies. Here in the United States, mostly it's the patients or their families paying for doula services. In some countries where there's a national health system, especially in Australia, there is more of a push for integration and a concerted effort to centralize training and access to services. The World Health Organization has called for state-funded health care systems to expand their palliative and hospice care services, and a lot of nations have, including by adding end-of-life doulas.

Your article advocates for exploring the use of end-of-life doulas for unrepresented patients. Are you aware of doulas being used anywhere for such patients now?

Meurer: I'm not. There are many conversations ongoing about decision-making and end-of-life care for unrepresented patients, but end-of-life doulas are noticeably absent from the academic literature.

Can you elaborate on how end-of-life doulas might be especially helpful for unrepresented patients?

Meurer: The trend for end-of-life care in general, but particularly for (hospitalized) unrepresented patients, is for drawn-out care, providing everything. But some of it may be unwarranted or unwanted, which can cause harm to the patient and distress to the health care team. We think by having doulas there as an expert who is in on the process, you're going to avoid ethical and procedural pitfalls. We think it's going to streamline the process, but also enhance the quality. End-of-life doulas can provide timely, just, resource-conscious value to care.

Flaherty: They can help the providers and the public guardians find that balance between not enough and too much care.

Do doulas have any legal authority to direct patient care for individuals unable to speak for themselves?

Meurer: The legal statutes don't specifically name doulas as a decision-maker, but we do think some existing statutes make room for them. Doulas would not replace the legal guardianship system (which may give a court-appointed guardian the power to make medical decisions on behalf of their ward), but they could supplement it. What we're saying is that the system at the moment is overburdened. Doulas could be transformative to end-of-life care but the work to support it just hasn't been done.

Who could do the work on what you suggest?

Meurer: Hospitals could do it, insurance companies could do it. There's a lot of groups and areas of health care that we feel it would be beneficial to and it would be in their interest to connect with the doulas organizations and advocates, and bring them into their conversations.

And we know they're looking for these solutions, we know there's a recognition of challenges and high cost with end-of-life care. We know there's a challenge in caring for unrepresented patients and it's a growing population. We know there's a challenge with moral burnout and distress with providers. So we're saying everybody has an interest here, and you're looking for solutions, here is one that should be explored. We find that it's morally justifiable.

Does the work of end-of-life doulas align with the mission of Catholic health care?

Flaherty: End-of-life doulas can and do support that aspect of the mission that defends human dignity by providing a dignified death. They're tending to the physical needs, the mental needs, the spiritual needs of the patients that they're working with and their family.

To request copies of their article, email Flaherty at [email protected] or Meurer at [email protected].

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