Death doulas: Redefining end-of-life care, or blurring the boundaries?
Key Takeaways
End-of-life doulas (EOLDs) are nonmedical workers who offer a gamut of support services to dying patients and their loved ones, including companionship, education, and end-of-life planning.
Due to their reliance on explicit and tacit (ie, experiential) knowledge, the role of a death doula is complex and often blurs boundaries.
Physicians should be aware that patients or their families may request the services of an EOLD, but understand the role of the death doula is nebulous, and their responsibilities may vary for each experience.
Caring for loved ones during their final days is incredibly difficult—a time marked by grief, confusion, and the need to make plans and decisions under duress. Trained palliative healthcare professionals can provide assistance through this transition, but increasingly, patients and families are requesting the services of "death doulas."
End-of-life doulas (EOLDs) are nonmedical workers who provide companionship to dying patients and their families, along with education and end-of-life planning.
Death doulas do not replace hospice personnel, but offer complementary services during hospice and palliative care. As their responsibilities vary from situation to situation, the role of EOLDs can be ambiguous—sometimes blurring the boundaries with medical staff.
Potential services offered by death doulas
EOLDs offer a range of holistic services, including biopsychosocial, practical, and spiritual support.
They can play a role in care from diagnosis through bereavement, according to the National Hospice and Palliative Care Organization (NHPCO).[]
The following are some typical responsibilities of death doulas:
Spending time with patients and families
Reinforcing the principles of palliative care
Offering emotional support
Participating in advance care planning
Facilitating family caregiving
Helping with life review, vigil planning, bereavement support, and respite care
Holding bedside vigils
Educating families regarding funerals
Sitting with family while the patient is dying and providing hands-on support
Hospices support the role of EOLDs by educating the public regarding their availability and making referrals to doula care, according to the NHPCO. Hospices can also train volunteers to be doulas or contract EOLDs from the community, and keep them on staff.
EOLD training can occur either online or in person and involves education about fundamental knowledge/skills. An increasing number of organizations or individual doula trainers offer such courses. And some EOLDs have backgrounds as healthcare providers.
According to the NHPCO’s End-of-Life Doula Advisory Council, “Doulas do not usurp the role of any other care provider; rather, they follow and reinforce established plans of care.”
"EOLDs bring added support and peace of mind to overwhelmed families caring for their dying loved ones in whatever setting they call home."
— NHPCO’s End-of-Life Doula Advisory Council
The NHPCO states that EOLDs act as an “extension” of the patient’s support network and their care team. They are comforting, nonjudgmental, family-centered helpers, offering whole-person care that reflects the principles of teamwork and community care.
EOLD services blur the boundaries of care
In the healthcare setting, the liminality of the EOLD’s role can be seen as a blessing or a curse, according to the results of a qualitative study published in Palliative Care and Social Practice.[] The study was based on 22 interviews in 4 countries where they are most active: the US, UK, Canada, and Australia.
According to the study authors, EOLDs recognize the importance of flexibility and “boundary work,” which involves the conscious demarcation of limits and delineations in fields of expertise.
“One of the main findings of our study was participants’ dual understanding of the importance of role flexibility along with an awareness of—and negotiation strategies to address—the challenges of 'boundary blurring,'” the authors wrote.
"The role flexibility of EOLDs both borrows and differentiates from existing community, professional, religious, and health care roles, while also offering coordination of all these existing roles for clients and families."
— Authors, Palliative Care and Social Practice
The authors stated that this flexibility was simultaneously found to be one of the biggest benefits and one of the biggest challenges of “community-based end-of-life and after-death care.”
“Many respondents identified the need to be cognizant of and negotiate the boundaries between generalized support and professional services, and this issue was seen as a particular challenge in developing working relationships within hospice and palliative care,” they added.
Respondents in the study also explained that their role as EOLDs is complicated by the need for both explicit knowledge, which is codified and evidence-based, and tacit knowledge, which is based on life experience. The conflation of these two types of knowledge yields holistic care.
Although death doulas must be cognizant of their limitations, such boundaries may limit their ability to fulfill their goals and meet their client’s expectations.
Consequently, EOLDs argue that reflecting on their experiential knowledge is important in their self-determination of boundaries, according to the authors writing for Palliative Care and Social Practice.
EOLD controversies
The blurring of boundaries inherent in the work of EOLDs can be viewed in two ways, per the experts.
On one hand, EOLD practitioners, trainers, and educators can embrace heterogeneous philosophies and practices, while remaining self-reflexive regarding their ambivalences. This ambivalence is common with the standardization of any emerging field, including midwifery or birth doulas.
On the other hand, the role of death doulas can be viewed as confusing, according to the authors of a review published in Health & Social Care in the Community.[]
“There remains uncertainty about the scope and funding of the death doula role, the variable availability and quality of education and training, and their relationship to health and palliative care services,” they wrote.
The authors note that there are clear areas of unmet need, but they question whether these gaps should be fulfilled by death doulas or healthcare professionals trained in palliative care. They add that it depends on factors like the number of clients a death doula sees, and what drives their demand (for example, how they receive referrals), but ultimately, there are “many unanswered questions as to what the death doula role is at the end of life.”
What this means for you
Death doulas, or EOLDs, are part of an emerging field in which nonmedical workers (who may or may not have a background in healthcare) provide support to dying patients and their families. Death doulas can care for patients and families; help educate them regarding end-of-life care; and help coordinate and plan vigils, funerals, and more. Because the role of a death doula depends on both explicit, or codified knowledge, and life experience, it may be hard to pin down the exact responsibilities of an EOLD.