The End-of-Life Doula Movement

By Francesca Arnoldy

In ancient Greece, doulas were servants who supported women through childbirth. The reemergence of doula work began in earnest during the 1960s, this time featuring trained professionals providing emotional, informational, and physical support. The essence of being “of service” remains.

Doulas establish relationships with clients, gaining trust and developing rapport, clarifying the goals, fears, and wishes of each expectant family. Then, during labor, a birthing doula provides continuous support—wiping a brow, holding a hand, fetching ice water, rubbing an achy back, suggesting positions and breathing techniques, whispering encouragements, and ensuring all invited are operating within their preferred roles. As a laboring woman weathers the ups and downs, the doula remains steady and calm, believing in the woman and in the process.

More recently, doulas have begun offering support to people at the end of life as well. Dying and death offer many striking similarities to birthing. There’s unpredictability. There’s a unique unfolding of events. Time fades away, as do the usual distractions of daily life. As doulas, we tune in. We listen more deeply. We feel compelled to take each moment as it comes, knowing we cannot make assumptions. Clients face intensity, doubt, and suffering, which takes many forms, including spiritual, emotional, physical, intellectual, and psychological. There’s difficulty. There are heightened feelings and reactions. Dynamics shift and sway, threatening our sense of foundation—the anchor to our past, present, and future.

Both birthing and dying become a sort of liminal space, thresholds to mystery. Doulas honor them as such. They are rites of passage that have three distinct features. As people enter into the rite, the initial experience is one of severance. We exit the usual pace of our schedules. We separate from our responsibilities. We put life on hold.

In early labor, women generally return to or remain at home (in their comfort zone), giving full attention to the beckoning task at hand. They shift between working through intermittent contractions and preparing for their journeys into motherhood (gathering supports, nourishing themselves, arranging, and organizing).

In early dying, we often notice changes in a person’s breathing, communication, and physical activity. People spend more time sleeping, less time socializing, and occasionally appear to be in a separate realm. In the case of both birthing and dying, consciousness and presence seem to waver between complete embodiment of awareness and what seems to be a level of dissociation with the reality those surrounding the person are experiencing.

Gradually, people enter the transition period of the rite. For birthing women, this could be considered the time between laboring and delivering the baby, ie, pushing. Contractions now bring different sensations and the body propels the process onward. Hormones shift and surge. The end goal is within sight. Women may experience exhaustion, exhilaration, fear, and excitement.

In the case of death, a person enters into active dying, the time of deep rest. Sometimes this is a quiet, peaceful phase. Sometimes there’s persistent pain and relentless agitation. Loved ones and care teams attempt to meet the needs of the dying person and lessen suffering as much as possible. It can be a time of great worry. Support people ask: How long will this go on? Am I ready for it to end?

Birth and death end relatively abruptly due to the incomparably momentous nature of both. For birth, it is the emergence of new life. For death, it is the end of a life. Reintegration is the final act of the rites of passage. A woman is reincorporated as “mother” into her community. Anything beyond death remains best understood by belief systems and mortal imaginings. We are without certainty. Survivors of the deceased reemerge as mourners, however.

How Might Doulas Serve?
The main task of a doula is to offer emotional support. In every word, touch, approach, and method used, we bring careful attention to the inner well-being of our clients. We believe in people. We honor life and the mysterious enigma of death. Our aim is to listen deeply and provide personalized, nonjudgmental care to promote our clients’ growth and sense of agency.

Doulas have a number of compassionate offerings available to clients, although personalization is always key. We align with the goals, wishes, and needs of our clients and we respect their choices. Throughout the University of Vermont Larner College of Medicine’s End-of-Life (EOL) Doula Professional Certificate Program, we illuminate ways of being a doula (the heart of the work) and ways of doing doula work (techniques and approaches), including the following:

discovering a client’s wishes;
working through a client’s anxieties;
honoring and holding sacred space;
leading guided imagery, visualizations, and breathing exercises;
promoting informed consent;
assisting with legacy and completion work, as well as advance directives;
conducting life review sessions;
providing resource referrals;
coordinating care; and
vigil planning and sitting.

Doulas support both the dying person and their natural network, knowing that by attending to the needs of loved ones or incomplete life tasks, we enable our clients with more opportunities to consider deeper meaning and connection. We expect that different personalities will present at varying points along the spectrum of disbelief, anger, sadness, and acceptance. The components of grief are not good or bad, right or wrong—they just are. And doulas meet people where they are as they vacillate, remaining neutral and caring.

Like a birth doula, an EOL doula can help prepare clients and their loved ones for what is to come. In the case of pregnancy and a terminal diagnosis, there’s time to plan. EOL doulas can help families develop wishes for this often overwhelming period. Just as a birth doula inquiries about a client’s postpartum plans, an EOL doula can ask about a post passage plan: What expectations do you have? What might help you feel most supported? What do you have in place and what can we consider arranging?

These conversations require grace. Doulas need to recognize the appropriate moments to broach these topics—or, if clients and their loved ones are not ready, to plant seeds for future talks. Minimizing surprises helps enhance people’s sense of confidence as they enter into the unknown. We can alert people to what commonly occurs, nurturing foresight and readiness.

This focus on planning and plan implementation is integral in doula work. It’s how we ensure support is unique to each client. It’s how we respect each client’s dignity. We assist families with preparing for loss. Additionally, doulas help arrange clients’ calendars to honor their priorities for time spent while weighing energy levels. We ask questions such as the following:

Which appointments and visits are most important?
Can we create a meal train so that friends, neighbors, and family members can deliver food and necessities?
Are there any additional services available that we might consider suggesting?
Would our clients like to finalize expressed wishes for care (before, during, and after dying)?
Can we work through some options for visualizations, keeping clients’ “special places” in mind, as we develop a personalized script to read?
Would our clients like to complete a life review?
Can we work on legacy gifts together?
Can we plan for the vigil time (ie, how the clients would like their spaces to look, smell, and sound as well as who they would like to have present)?
Are there readings or rituals we can explore and include?

Doulas carefully consider how we fit into the care team. Is a social worker already drafting funeral plans with the family? Is the hospice chaplain or priest from the client’s church meeting regularly to discuss existential questions? Would an aunt love to organize the creation of a giant photo collage? Is there a brother who feels compelled to manage the appointment and visitor schedule?

Doulas don’t duplicate. We provide complementary care, honoring the roles of all involved. No two clients will require the same level and type of doula support.

Why Does Doula Support Work?
Studies repeatedly demonstrate positive outcomes associated with birth doula care. According to researchers, “The presence of a trained doula providing continuous support to laboring women and their partners appears to have a significant effect on rates of instrumental vaginal deliveries and cesarean sections” (Fortier & Godwin, 2015).

Furthermore, according to the authors of a study comparing doula care with standard care, “Continuous support during labor may improve outcomes for women and infants, including increased spontaneous vaginal birth, shorter duration of labor, and decreased caesarean birth, instrumental vaginal birth, use of any analgesia, use of regional analgesia, low five-minute Apgar score, and negative feelings about childbirth experiences. We found no evidence of harms of continuous labor support.”

They add that “Continuous support from a person who is present solely to provide support, is not a member of the woman’s own network, is experienced in providing labor support, and has at least a modest amount of training (such as a doula), appears beneficial” (Bohren, Hofmeyr, Sakala, Fukuzawa, & Cuthbert, 2017).

Why might continuous support from a doula be advantageous? When reviewing similar benefits of birth support in their research, Gruber and colleagues speculate: “Communication with and encouragement from a doula throughout the pregnancy may have increased the mother’s self-efficacy regarding her ability to impact her own pregnancy outcomes (Gruber, Cupito, & Dobson, 2013).

We imbue our commitment to positive regard into our approach to care—every touch, gesture, and conversation. We do not dip into internal reserves to replenish a client’s sense of emptiness. Instead, a doula believes in the inherent wisdom and strength of each human being and their limitless potential to evolve. We recognize the tendency toward self-doubt during times of intensity and firmly believe in people’s capacity to find their footing and next steps, even—especially—when they feel lost or overwhelmed.

In the throes of liminal space, doulas remain the calm in the chaos. We encourage a thoughtful slowing down when many feel rushed to get past a hurdle. We nurture contemplation as clients consider tumultuous periods, questions, and crossroads. We turn toward and lean into suffering with our abiding faith in people and know we are not meant to “save” or “rescue” people from their journeys.

Might there be comparable opportunities and equally beneficial reasons to include doula support at end-of-life in addition to birth? In a study investigating the effectiveness of lay health workers, researchers from Stanford University Medical Center found that “Patients with advanced cancer who spoke with a trained nonclinical worker about personal goals for care were more likely to talk with doctors about their preferences, report higher satisfaction with their care, and incur lower health costs in their final month of life” (Patel et al., 2018).

In these cases of research on birth and death, a nonmedical emotional support person provided the listening ear required to forge connection, cultivate honesty, and improve outcomes. Satisfaction went up; costs went down.

Barriers to Providing Doula Care
There are a few marked obstacles EOL doulas face as they enter the field, the most pressing being role recognition and financial structures. Currently, there’s no credentialing body overseeing doula work. Doulas are not licensed professionals. This remains true of birth doulas, who have been completing training protocols since the early 1990s with the inception of DONA International, the oldest and largest doula training organization.

There are myriad options for becoming a doula (birth and EOL). Most programs are rigorous and comprehensive although they range in terms of the breadth of topics covered, length of studies, and required assignments.

In recognition of this burgeoning field, the National Hospice and Palliative Care Organization (NHPCO) has established an End-of-Life Doula Council that “provides information and resources to NHPCO, its members, affiliated organizations, and the general public to promote awareness and understanding of the end-of-life doula role. It also informs those constituents of the benefits of doulas for dying people and their families, and guides them on incorporating doulas into existing services and how to access outside doula providers.”

Doulas and medical teams need to work collaboratively, respecting our common goal of providing superb holistic care. Increasingly, hospice and palliative care programs are including doulas on their teams, although mainly in a volunteer capacity thus far.

How do doulas establish this new role? Doulas often balance this effort in the workspace and in the public sphere. When serving clients, we are introducing our scope of offerings. We are indirectly educating as we allay the fears of care providers who wonder about our place in the realm: Will doulas invade? Will we push people to the side? Will we take over? Will we make/question medical decisions? What do we do? What is our agenda?

Doulas have numerous jobs, activities, exercises, and techniques to administer, but we are also there as a companion, witness, and listener. This requires graceful flexibility. Meeting people where they are means not always adhering to a premeditated itinerary. We need to be versatile and adaptable while remaining within our scope.

As team members witness doula work, they begin to value our contributions and realize what we offer is augmenting what’s already available. We add harmony. We complement care. We acknowledge the varied personalities and gifts of those present and involved.

Doulas do not offend. We are anodyne in our neutrality. Our presence is innocuous and does not arouse anxiety. We offer support without drawing attention to ourselves. This is not ego work; this is heart work. While supporting clients, we become caregiving chameleons. There’s shape-shifting involved. We read the room. In accordance with the needs of the moment, we step forward or back.

Financial structures also present issues for doulas. Charging fees for this type of work has been and will remain a challenge. Doula work primarily has been a private pay transaction or volunteer work. Insurance programs offer very little in the way of coverage. In a few states, birth doulas have worked to pass legislation to require Medicaid coverage, but the low reimbursement rate has prevented most practicing doulas from completing and filing the necessary paperwork.

There is some potential for more inclusionary coverage as hospitals shift away from fee-for-service models to value-based reimbursement, according to the National Institute of Diabetes and Digestive and Kidney Diseases. Also, choices for care and long term care programs offer options for fund allocations, which could perhaps include doula support.

Core Care Components
What remains at the core of doula efforts, and enhancing the experience of death at large, is our fellow humans. How do we want to be treated? How do we want to be honored? What would we want for ourselves? What can we make available and possible?

Options are empowering. There is work to be done. There is a place for doulas by the bedside. As I explained in my book, Cultivating the Doula Heart, “We are sensitive and affirming, soothing in our care. We are not dismissive. We do not minimize a person’s interpretation of what they are undergoing. Through all the ways we doula, we promote empowerment and healing born of processing and bravely facing that which threatens one’s sense of intactness. This healing—not in the sense of a cure, but in the sense of an unbroken soul—generates peace in the face of chaos” (Arnoldy, 2018).

— Francesca Arnoldy is the author of Cultivating the Doula Heart: Essentials of Compassionate Care.

References
Arnoldy FL. (2018). Cultivating the doula heart: Essentials of compassionate care. Hinesburg, VT: Contemplative Doula.

Bohren MA, Hofmeyr GJ, Sakala C, Fukuzawa RK, Cuthbert A. (2017). Continuous support for women during childbirth. Cochrane Database of Systematic Reviews, (7), CD003766.

Fortier JH, Godwin M. (2015). Doula support compared with standard care. Canadian Family Physician, 61(6), e284-e292.

Gruber KJ, Cupito SH, Dobson CF. (2013). Impact of doulas on healthy birth outcomes. Journal of Perinatal Education, 22(1), 49-58.

National Hospice and Palliative Care Organization. End-of-Life Doula Council. https://www.nhpco.org/about-nhpco/committees-and-councils/end-of-life-doula-council/. Accessed November 15, 2019.

National Institute of Diabetes and Digestive and Kidney Diseases. Changing landscape: From fee-for-service to value-based reimbursement. https://www.niddk.nih.gov/health-information/communication-programs/ndep/health-professionals/practice-transformation-physicians-health-care-teams/why-transform/changing-landscape-fee-service-value-based-reimbursement. Accessed October 3, 2018.

Patel MI, Sundaram V, Desai M, Periyakoil VS, Kahn JS, Bhattacharya J, et al. (2018). Effect of a lay health worker intervention on goals-of-care documentation and on health care use, costs, and satisfaction among patients with cancer: a randomized clinical trial. JAMA Oncology, 4(10), 1359-1366.