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Introduction   

When people hear the word “doula,” it is likely that if any association comes to mind, it is with the childbirth experience. The role of a doula in providing ongoing emotional, educational, and physical support to a client, is a fairly new title in and of itself; the roots of a childbirth doula date back only to the home birth movement of the 1970s (1,2). The first professional doula was trained in the United States in 1994, helping with care from pregnancy through the postpartum phase, so is still a bourgeoning field (2, 3).  

In recent years, with the growing hospice movement, many professionals working with the dying have initiated various efforts to provide quality end-of-life care. In the United States, this has evolved from the dying-at-home model in the 1970s to the current-day iterations of hospice care and end-of-life doula (EOLD) training (4).  

Though the EOLD movement is still in its nascent stages, there is a great deal of information available for those who are interested in this type of care.  

End-of-Life Doula 

Definition 

Simply put, end-of-life doulas provide holistic, non-medical care to the dying and their loved ones (8). They provide advocacy, support, comfort, companionship, and legacy planning to people with a terminal illness, as well as grief support to friends and family (8). 

The word “doula” itself is derived from the Greek word meaning “woman caregiver” or “female slave” (1, 4, 5). In the United States, “doula” first referred to those providing non-medical peri-childbirth supportive care, but now also applies to the other end of life’s spectrum as well.  

As the end-of-life doula is still a relatively new role in the care of the dying, the definition may vary slightly from organization to organization. In fact, according to a 2020 study, the term “end-of-life doula” was not fully agreed upon; some chose titles such as: death midwife, death doula, end-of-life consultant, death carer, death walker, soul midwife, end-of-life midwife/guide/coach, circle of life practitioner, and more (1).  

Overall, though, the EOLD model tends to follow that of the birth doula, who aims to support the general well-being of the patient, be it physically, emotionally, mentally, or educationally (3). EOLDs do not provide medical care, and instead focus on the overall well-being of the dying individual (3, 4, 5).  

History and Background  

Throughout human history, birth and death traditionally occurred with family present, often in comfortable or familiar settings. During the founding of the United States, women often gave birth at home with a midwife at their side, and most people tended to die in their homes as well (5, 6). It wasn’t until the 1800s that there was a push for a more medical, hospital-based model of birth and death, spearheaded primarily by white male physicians (5, 6). Hospitalized births and deaths became the norm for over a hundred years until the Women’s Movement came about in the 1960s and ‘70s (5, 6).  

In these decades, there was a great shift in the US to have the natural processes of birth and death occur once again in the home, with family present (2,3,6). Many women opted to have most – if not all – of their childbirth experience occur within their own house, accompanied by nurse midwives who supported their physical and medical care. The role of the birth doula, beginning in the 1980s, arose from the mother’s need for additional help with emotional support and advocacy (1).  

Similarly, the death doula movement has developed out of an unmet need of the dying: To die – as much as possible – on their terms, with as much comfort and dignity as they can, surrounded by people of their choosing (1,5). This role was more fully developed in the 1990s, with a formal training program established in the US in 2005 (7). Today, there are dozens of EOLD training programs available, though the practice may still vary widely among organizations (7).  

Settings  

Similar to hospice care, end-of-life doulas work anywhere the dying person resides or chooses to go. This can include sitting vigil with the patient at home, accompanying the person to medical appointments, providing respite care for family members, visiting a hospice or nursing home, or providing education to community members (10).  

Services EOLDs Provide  

Though each EOLD may practice differently, there are some commonalities in the role. EOLDs may do any or all of the following (1, 5, 9, 12, 13):  

• Supporting the patient in these domains: 
  • Practical 
  • Evaluating any needs of the patient before death  
  • Helping with transportation to/from medical appointments, errands, etc. 
  • Coordinating with the patient and family for advance care directives  
  • Creating, updating, or maintaining wills and end-of-life documents 
  • Planning for after-death care: 
  • Contacting funeral homes 
  • Picking a burial method and site  
  • Helping prepare the obituary and funeral arrangements 
  • Emotional 
  • Listening 
  • Being present to sit quietly with the person 
  • Facilitating or coordinating bereavement services for family 
  • Engaging in legacy planning  
  • Physical 
  • Working with healthcare personnel to decrease pain and negative symptoms   
  • Collaborating with the family to prepare the patient’s space for optimal look, feel, sound, and comfort  
  • Assisting with positioning, breathing techniques, hands-on comfort techniques 
  • Providing postmortem care (washing and dressing the body, etc.)  
  • Spiritual 
  • Sharing a prayer or helping get religious personnel to the patient  
  • Engaging the patient’s religious community, if any  
  • Creating guided meditations catered to the patient’s preference  

• Educating the dying person and loved ones: 
  • Giving resources 
  • Teaching practical skills 
  • Providing information to the family about the signs and symptoms of death  
  • Naturalizing the death process 

• Empowering:  
  • Encouraging patient/family autonomy in making end-of-life decisions 
  • Fostering independence as much as possible 
  • Championing the voices of the family and individual 
• Helping the broader community to reframe dying as a natural process 
• Having informal conversations with others about death 
• Speaking publicly on the topic 
• Providing free advance care planning workshops 
• Conducting death cafes online or in person  

Certifications and Education  

Currently, there is no specific certification or credential for an end-of-life doula. The role is still developing, as is the practice surrounding it. Since EOLDs provide supportive, nonmedical care, a license is not required to serve as one. Many different training programs do exist, however, and are often provided by hospices, palliative care teams, hospitals, universities, and private organizations (5, 8, 9).  

In a 2020 study, 21 EOLDs were interviewed about their experience and education (1). All but one respondent had a professional background in healthcare, social work, or education (e.g., nursing, midwifery, psychology, hospice, etc.) (1). Experience with providing end-of-life care ranged from three to 35 years, and 17 of the 21 EOLDs studied said they trained with noted practitioners in the field (1). Two participants also had a background in home funerals.  

The National End-of-Life Doula Alliance (NELDA) provides an EOLD proficiency badge, wherein an EOLD can show his or her knowledge about the death and dying process, as well as the services EOLDs are expected to provide (11). This micro-credential is not accredited nor necessary to practice but shows others that the NELDA’s Core Competencies have been met and that the EOLD has knowledge and skills comparable to others in the field (11).  

Teamwork Strategies and the Nurse’s Role 

As the end-of-life doula works within the realm of palliative and hospice care, he or she is very much part of a larger team. Some others involved in palliative care include nurses, physicians, social workers, clergy, physical/occupational/speech therapists, volunteers, family members, friends, and more.  

For nurses, some strategies for inclusion of the EOLD in the patient’s care may include:  

• Asking the EOLD to attend family meetings about the dying person. 
• Talking with the patient’s palliative care team about how the EOLD may support their efforts. 
• Sitting with the EOLD, if possible, to see what care nursing can assist with. 
• Talking to the patient and EOLD together to incorporate that into the nursing plan of care.  
• Assessing what other unmet needs might exist for the patient or their family and working with the EOLD to provide as much as possible.  

Resources and Support  

In the growing field of end-of-life care, spurred on by the natural birth and death movements of the 1970s, there is an ever-expanding wealth of resources available for clinicians and laypersons alike.  

Some of these include the following:  

• American Association of Retired Persons (AARP): https://www.aarp.org/caregiving/home-care/info-2018/end-of-life-doulas.html  
• American Society on Aging: http://generations.asaging.org/  
• DONA International: https://www.dona.org/ 
• International End-of-Life Doula Association (INELDA): https://inelda.org/  
• National End-of-Life Doula Alliance (NELDA): https://www.nedalliance.org/  
• National Hospice and Palliative Care Organization (NHPCO): https://www.nhpco.org/  

Additionally, local divisions of aging, hospitals, and hospices have myriad resources available, particularly those involved in cancer/ terminal illness care. It may be helpful to check with area hospices, palliative care teams, and departments of aging to see what is available for your community.  

Conclusion

In recent decades, end-of-life care has received much more attention in American society. Thanks in large part to the natural birth and death movements of the 1970s, doulas have become a mainstay for birth and death care, allowing patients to choose many of the circumstances of these transitional, natural events. Though there is no specific training or credentials offered for end-of-life doulas (EOLDs) at this time, more and more resources are available all the time.  

Caring for the dying person and his or her loved ones, the EOLD provides a vast number of supportive services. If a nurse is also involved in the care of such an individual, there are many ways to collaborate in the patient’s best interest. When working as a team, palliative care efforts can assure a patient as peaceful and comfortable a death as possible, allowing his or her last wishes to be met.  

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