The End-of-life Doula

Abstract:

End-of-life Doulas (EOLDs) provide non-medical, practical, emotional, spiritual, and physical care, and support to those living with serious illness, their family and caregivers, beginning before hospice and lasting throughout the dying time and afterwards. Most who pursue this line of work have been deeply affected by the death of someone close to them and seek to help improve the end-of-life experience for others. EOLDs enhance other care received and collaborate with medical, palliative care, and hospice team members. EOLDs are becoming much more prevalent.

Key Words:

end of life, doula, hospice, palliative care, death, caregiving, preparation

Irina was a retired schoolteacher who lived alone and had stage IV cancer. We ran into each other at the market, and as we caught up, she told me her cancer had returned and she now felt an urgency to “get her affairs in order.” Knowing that I had experience in this area, she asked if I would meet with her to help her sort through her clutter. Our visit turned into so much more. As we talked about her possessions, she told me about her feelings, her fears, her desire to live, and her life story.

Over the course of a year Irina and I visited many times and my role turned into that of an end-of-life doula (EOLD), although she never called me that. I sensed her feeling of relief as we discussed ways to increase her support as she got sicker, and one task led to another as she accepted my involvement. We organized people to visit, bring meals, take her out, check in on her, feed her cat, and eventually be on-call to take shifts to provide care in her home. I helped her take the next steps to complete her legal paperwork and talk to her adult child, from whom she was estranged. We even talked about and planned what she wanted in her memorial service. During her last weeks, her whole community was there for her and made it possible for her to die at home in hospice care.

Imagine if we lived in communities where people openly talked about growing old, living with serious illness, preparing for death, and grief. What would that look like? There would be opportunities to share and gain support in all the places where we live, work, and play. Our neighborhoods, civic organizations, clubs, schools, and places of work and worship would all provide and encourage opportunities for connection throughout our lives.

The organizations that provide end-of-life services and resources would be well-funded, numerous, and popular. Support would be just around the corner, easy to reach and obtain, and affordable. The option for in-home, one-on-one care from a well-trained companion would be available to everyone. That is the goal of EOLDs everywhere who work to create compassionate end-of-life communities.

What Is an End-of-life Doula?

End-of-life doulas (EOLDs) provide non-medical support and care to those living with serious illness, their family and caregivers, beginning as early as initial diagnosis and continuing through palliative and hospice care, death, and bereavement. EOLDs work with individuals and families in a home, a care facility, or even in a hospital, providing continuity of care and addressing the needs of the whole person—emotional, spiritual, physical, and practical.

Because doulas are non-medical care providers, they do not give advice or tell anyone what to do; rather, they provide non-judgmental care and support that is guided by the client’s goals and values. EOLDs provide an extra layer of support. They collaborate and communicate with, and refer to, other care providers, and do not usurp anyone else’s role.

EOLDs overlap with other caregivers but differ from other more familiar and well-established caregiving roles such as hospice nurses, social workers, care aides, and volunteers. The primary difference is that doulas can spend more time with patients and families. Hospice workers carry heavy patient loads and see many patients each day. In addition, because many people receive hospice care only at the very end of life, and for a very short period of time, the workload is time consuming. By contrast, EOLDs often begin working with people much earlier, well before they consider enrolling in hospice.

EOLDs educate clients about all available services, including hospice, and help them receive services more quickly and more effectively. Other related community caregivers, including those who work for homecare organizations as home health aides or companions, do not usually have training in the dying process, community resources, and the myriad aspects of living with serious illness.

EOLDs receive training about:

• The dying process
• Non-medical, hands-on care and comfort techniques such as comfort touch and guided imagery
• Active listening
• Advance Care Planning
• Life review and legacy work
• Creating ceremony and ritual
• Memorial and funeral options
• Community resources

EOLDs make time to sit and listen. They have experience with creative ways to support the dying person and their family/caregivers with all the practical aspects of living and dying. They focus on building relationships, and on communication and preparation for what lies ahead. By providing resources, guidance, advocacy, and companionship, EOLDs help reduce the overwhelmed feeling, and improve the quality of life, both for those who are able to prepare for death and those who have experienced a sudden or accidental death.

History of the End-of-life Doula Movement

The term doula, used since the 1980s in relation to birth and postpartum care, was first applied to death care in the late 1990s. Deanna Cochran, a former hospice nurse, was one of the first people to develop the concept of death doula care after accompanying her mother on her journey through illness and death. In 2005 Deanna developed the first EOLD certificate training program, which included lay people as well as healthcare professionals. She provides an excellent history of the EOLD movement on her website. In 2015 there were a handful of EOLD training programs in the United States. Today, there are dozens.

In 2017, Cochran and I began collaborating to develop a consistent definition of end-of-life doula and delineate a scope of practice and standards of care. Along with other leaders in the field, we formed the National End-of-life Doula Alliance (NEDA), which serves as the only non-training membership organization that brings together all EOLDs and trainers to provide cohesion in the development of the field. It has more than 1,200 members.

The EOLD concept has caught on like wildfire in the past seven years. There are now trainings of many types, including in-person, self-paced, and live online classes. The typical length of training is from 30 hours of synchronous learning to six months of self-paced learning. Newly trained students find continuing education through local collaborations, online support groups, private mentoring, community placement as volunteers, research articles, and myriad webinar and podcast offerings such as those offered through TheDyingYear.org.

NEDA provides written information developed through collaboration with many voices, as well as a state-by-state and international directory of EOLDs and training programs. In addition, international conversations are taking place in the form of online or in-person conferences, webinars, and publications. Many other countries now have EOLD membership organizations and training programs as well, including Australia, the UK, Canada, and Mexico.

Key themes in national and international conversations between EOLDs include the challenge of developing an EOLD scope of practice and standards of care in a way that includes traditional and ancestral knowledge, blends many different healing modalities, and encourages integration into the healthcare system, while also recognizing that healthcare systems need improving.

The role of the EOLD continues to evolve and define itself. Through many channels, EOLDs share best practices and experiences with each other with the aim of developing this important new field of community-based end-of-life caregiving. As more doulas from different backgrounds become involved in this field, doulas will penetrate deep into their communities to provide compassionate support and resources that strengthen individuals and families to care for one another in meaningful ways during dying and death. The impact on the quality of the death and grief experience will be profound as families are supported through all types of death, anticipated and sudden, with loving care.

Why We Need EOLDs

Traditionally, the work of caring for each other at the bedside during illness and death has fallen to family members. Generations ago, when it was more common for multiple generations of one family to live near or with one another, a child or extended family member provided bedside care during illness and death. With advances in medical care and changes in family structure, for most people death has been moved outside of the home into care facilities and hospitals. Those who want or need to be cared for at home must rely upon family and friends to care for them even if other services such as hospice are available. It can be overwhelming for caregivers to be with someone who is sick and dying. The EOLD role has developed to meet a growing need for an additional layer of support in the home setting.

We all know of someone who didn’t know where to turn when they became very sick. Perhaps they did not prepare adequately for how to care for themselves and can only talk to their medical specialist. But doctors and nurses who focus primarily on the cure and treatment of disease are limited in what they can offer in terms of practical suggestions about how to live with illness.

As disease progresses, one problem can lead to another, compromising self-care and increasing fear and isolation as well as the risk for further problems and the sense of feeling lost and overwhelmed. Experiencing a crisis such as a fall or infection is often what finally leads to receiving more services or a change in living arrangements. The disease specialist should not be the only means of support when patients have difficulty making other connections and even knowing what other services to ask for.

Palliative care, which is designed to help with the many aspects of living with serious illness, unfortunately is underused and not available everywhere. (Far too often, when patients ask for palliative care, they have difficulty obtaining the necessary referral from their physician or are told that it is not time for this type of care yet.) In addition, many people are uninsured, underinsured, and must pay out-of-pocket for home health care and assistance with activities of daily living.

By contrast, EOLDs are well-trained but low-cost. Many work on a volunteer basis or charge an hourly fee or consultation fee via a sliding scale. They make creative alternate arrangements when sitting with a client for a long period of time, such as a vigil during active dying, and/or help the family enlist support from members of their own community.

The cost for an EOLD is similar to that of a birth or postpartum doula and depends upon where one lives and in which setting (urban or rural). The typical hourly fee ranges from $25–$75. Some doulas offer consultations ($50 –$150) for discreet services such as legacy projects or planning a vigil, or a monthly fee for periodic check-ins or more when needed. There is no third-party reimbursement for EOLDs because they are not licensed and regulated by any state.

Doulas also are knowledgeable about other community resources, many of which are low-cost or free, and they help families tap into them. EOLDs accompany their clients through the maze of decisions while helping them to identify their needs in all areas of their life.

Barbara Karnes, a preeminent hospice nurse educator, emphasizes the need for EOLDs based on her experience and the changes in hospice care she has observed over the past 40 years (see her article about the EOLD movement on the National End-of-life Doula Alliance website). As a hospice nurse in the 1980s, Karnes was regularly at the bedside of the dying. Currently, however, while hospice organizations do everything they can to prepare a family, there is no expectation that they will be with the patient when they die; their workload is simply too demanding. Karnes describes how EOLDs are needed now to perform the function hospice workers once fulfilled.

Hospice organizations across the country and abroad are beginning to incorporate EOLDs into the services they offer in various ways to help them better meet the needs of their patients and ease some of their staff’s load. They may refer families to independent doulas who work in the community, who then engage directly with the family. They may bring trained doulas onto their volunteer team or develop their own volunteer EOLD training program. They may create a paid position for an EOLD. To get started, interested organizations can reach out to a local doula to learn more, invite a doula to give a presentation for employees, or have a staff member attend an EOLD training. Doulas complement and enhance the services hospice offers by providing an extra layer of support.

Profiles of Various EOLDs

Most people who become doulas do so because they have had an intimate experience with the death of a loved one. They realize they have a gift to be with people at this tender time of life, feel called to share this gift with others, and recognize the need in our society. Nearly all of my students have been impacted by, or been a caregiver for, someone close to them who died. They self-identify as a person that others feel comfortable with talking about illness and death. In essence, they have already been a doula for others. They’ve learned firsthand the benefits of having someone who takes time to sit and listen, hold their hand, and accompany them through a very overwhelming and confusing time. Because of their personal experiences, EOLDs are compassionate and can relate to what others are going through. They have a desire to put into action what they have learned to help make dying and death easier for someone else.

What follows are a few profiles describing people who have become EOLDs:

Four years ago, Mona’s son died of cancer at age 28. Mona regularly attended a support group for parents who have lost an adult child. As a part of her healing, she wants to use what she has learned to help others. Her EOLD work focuses on preparation and grief.

Qiang is very active in her faith community. She has been called by many families at a very intimate time to be at the bedside to pray. Comforting others at this difficult time has become her calling. When she heard about EOLD training, she knew this was the way to learn more about the dying process, what services are available in the community, and other ways she could help.

Jaylin is a hospice chaplain who has spent years being with families of all faiths in the last weeks and days of life. His job requires him to make multiple visits every day and he often feels frustrated that he can’t get to know each family more. He became an EOLD because he and his staff are exploring ways for their organization to bring EOLDs on to their volunteer services team, recognizing that EOLDs will have more time to spend with dying individuals and their loved ones. He recently received a grant to help make this happen.

Kai, a social worker who specializes in grief counseling, is active in the social justice community and has had many conversations with colleagues, friends, and acquaintances about planning ahead for death care. A particular concern is ensuring that the identity of all people be honored by those who care for them. Kai is working hard to educate local care facilities about the special needs of elders in the LGBTQIA+ community and wants to learn more about how to provide services to this community.

Conclusion

The way I began working with Irina (the woman from the beginning of the piece) is similar to how many EOLDs engage their clients. EOLDs spread the word through mutual contacts and other support channels, neighbors and friends, members of their faith community, and family. As more doulas become trained and active where they live and work, more families and communities will benefit.

The world does not yet know much about EOLDs, but as each of these specially called people goes out into their community to serve, they will touch more lives. Those they work with will in turn help spread the word about EOLD care, and the movement will grow. Just as the development of birth doulas has grown in the past 50 years, so will the next years see the blossoming of the end-of-life doula profession. I believe this model of caring for people at the end of life will become a chosen path for many in our society.

Sidebar: How to Find an End-of-life Doula

• Check the state-by-state listing on the NEDA Website.

• Google “end-of-life doula” in your area.
• Ask your local hospice organization if they know of any local EOLDs.

Sidebar: How to Work with a Doula

• Have a meeting with the potential EOLD and be sure to describe your needs and what you are looking for, specifically.
• Ask the EOLD what services they provide, why they do this work, how long have they been doing it, how they are trained, and if they work with any other doulas. The initial meeting should give you a good idea of your comfort level with this person and whether you will be able to ask for what you need and get your needs met.
• If you decide to work together, ask for a written agreement that includes details, including fees, and review it periodically.

Merilynne Rush, MSHP, BSN, holds an MS in Hospice and Palliative Studies and owns The Dying Year, which offers end-of-life doula training, mentoring, and certification. She was the first president of the National End-of-life Doula Alliance (NEDA) and was vice-chair of the End-of-life Doula Advisory Council (NHPCO). Rush facilitates the Ann Arbor Death Cafe and is a Respecting Choices 1st Steps Facilitator Instructor. She began her caregiving career as a homebirth midwife.