Work of a Death Doula

What is a Death Doula? At first glance, the term might sound a bit macabre. Or perhaps you’ve heard the word doula used in relation to the birthing process. The term “doula” was developed in the 1960s to describe someone who is employed to provide guidance and support to a pregnant woman during labor. This type of labor support has been utilized since ancient Greece.

A death doula, also called an end-of-life (EOL) midwife, assists in the dying process. Both types of doulas coach human beings during major life transitions (during the start of life and at the very end). In addition, unlike hospice chaplains who are part of an interdisciplinary medical team paid for through Medicare, Medicaid, and some private health insurers – death doulas can be hired privately by families to companion patients in their homes and in nursing homes during the last months or weeks of life.

Doulas can be hired at any stage of illness to provide support and to help enhance a patient’s quality of life before death. Therefore, the doula movement is a major contributor to the emerging field of palliative medicine. The well-trained doula provides emotional support, resources, comfort, knowledge, and insight. For example, they can empower a family and patient to reconnect during the profound experience of dying. They may also try to aid a patient in fulfilling their final wishes in an EOL plan.

What is meant by an EOL birthing plan? I would imagine that doulas facilitate the wishes of patients (if there is enough time) as I did in my practice. There is a lot for a dying person to ponder during this most profound period of transition and our culture tries to highlight significant milestones. Dying well is the primary, temporal landmark of our lives. A great achievement and blessing if it is prepared for and anticipated and a summons for family and friends to gather and bestow honor upon their loved one. It is a period to acknowledge and celebrate the juncture between reality and our potentiality. A time to remember, bury the hatchet, and grow spiritually and emotionally.

An end-of-life plan can help mark this occasion with legacy planning, favorite music, comfortable clothing, room oil diffusers, memorable photos, art therapy, massage, reiki, pets, cozy afghans, religious rituals, prayer, singing, beloved poems, family and friends, favorite food and beverages (if early enough in the process), hugging and holding, basking in the sun and fresh air, a bird feeder stationed at the bedside window, a beloved hobby collection scattered about, meditative environmental sounds, or silence and privacy.

As well, families and facility staff often need gentle guidance and education at the end of a loved one’s life: for example, why extremities turn blue when death is near (mottling), the loss of ability to swallow, or encouraging a family member not to push eating as an antidote for their own grief or helplessness, and to understand that at times loved ones can really feel and see deceased family members at the end.     

Most doulas come to the profession with backgrounds and experiences from a variety of careers which is valuable at the deathbed. They are not medical providers nor a part of the hospice disciplinary team but are trained to minister in conjunction with them. Some progressive hospice providers who understand the wisdom of partnering with the doula movement testify to the benefits for patients, families, and staff of that professional collaboration.

The doula movement has made great strategic and organizational strides in the last few years: it has trained more than 2,600 individuals and hospital staff in the last three years through the International End-of-life Doula Association (INELDA). The National Hospice and Palliative Care Organization has formed an End-of-Life Doula Council and hopes to involve its membership in volunteerism, as independent contractors hired by families, or as agency staff. Doulas and chaplains are trained to observe, listen intently, and create space for the immediate needs of patients and families in crisis. They provide a stable, objective, and calm presence during one of the most challenging transitions in life.

So what is the difference in training between a doula and a hospice volunteer or a doula and a hospice chaplain? Hospice volunteers go through a few weeks of thorough training, but it is not as formal and extensive as the preparation for a doula. Some doula programs provide training in light and energy work, an emerging practice for the dying and their families (I did some energy-balancing work with Katherine McCabe in Sturgeon Bay to understand its elements and merits). There is so much potential in this discipline for those who are terminally ill or close to dying. This is training that chaplains and volunteers do not receive.

Obviously, doulas and volunteers are crucial to a hospice team as vigil providers and a trained social/emotional presence for patients when the family cannot be present. They provide another “set of eyes” and extra help for the family.

For a hospice Chaplain, the background required is extensive: A graduate degree in religious studies or a divinity degree from a seminary is the foundation to which layers of clinical practice in pastoral counseling are added. As well, many hospitals require the completion of four clinical pastoral education units to become fully-certified chaplains; which is equivalent to two years of post-graduate study (1,200 hours of clinical pastoral education, spiritual formation, and years of internships with the elderly and dying).

In addition, a complete-certification process and ecclesiastical endorsement (from a religious institution) take an additional six to nine months of paperwork and interviews. So, a chaplain brings to the dying bed, expertise in the emotional, spiritual, and religious needs of a patient and their family. During my years in hospice, 90% of incoming hospice patients took services from a chaplain. All humans are spiritual beings, but not all human beings express their spirituality in a religious way.

A chaplain is trained to distribute communion, baptize, plan funerals, deliver eulogies, arrange sacraments, explain Scripture passages, offer spiritual direction and pastoral counseling, perform religious rituals, clarify and educate about religious issues, and discuss the theology of the afterlife. Chaplains must also be trained in grief work, forgiveness issues, and sacred music. It’s necessary to be familiar with the bibles of each of the three branches of Christianity (Orthodox, Roman Catholic, and Protestant) as families and patients are particular when it comes to the interpretation of the Sacred Scriptures of each denomination. Also, chaplains have studied the five major monotheistic religious traditions – Hinduism, Buddhism, Judaism, Christianity, and Islam.

So where does the doula profession fit in? the possibilities are endless. suffice it to say, we need more professional doulas and volunteers to work in EOL care. Current data indicates that there is a “tsunami” of silver and golden agers nearing the end of life now and within the next two decades.

We live in a death-denying culture and a culture that puts time limits on grieving. Fortunately, there has been a positive death movement exploding across America in recent years and the doula profession is an aggregate of that fresh and healthy perspective. We are experiencing a groundswell, a change of thinking at a grassroots level, that is calling us to view terminal illness and the dying process in a more natural, spiritual, creative, and holistic way.   

Comfort around death is evolving with the development of platforms such as Dinner Over Death (DOD) Conferences and Death Cafes, which are popping up all over the map in urban areas. These pulpits facilitate conversations about dying or give those interested in being proactive about their own dying process a space to query, learn, ponder, and plan. The DOD program is partnering with the Cleveland Clinic and with Memorial Sloan Kettering Cancer Center in NYC.

The Death Café in Milwaukee is aptly coined “The Womb Room” which was started by Shantelle Riley, to facilitate conversations surrounding death. Our western culture has separated death from the natural process of living and dying. The doula or soul midwife aims to return death to its sacred place in the celebration of life.  When I speak to older adults about what they want at the end of life, they mostly articulate four requirements: 1. “I want control over how I die.” 2. “I want a comfortable death.” 3. “I want a death with dignity.” 4. “I would prefer to die at home, but not be a burden to my family.”

There are many exciting developments in the movement. Doulas are being prepared to offer multi-dimensional care to patients in hospice, their homes, senior communities, and large healthcare systems across the United States and Canada. As well, a Competency Badge (NEDA) can now be earned through a universal exam that assures patients, families, hospice providers, and hospitals of the legitimacy, excellence, and professionalism of doula training. It assures core proficiency, aptitude, and mastery.

The for-profit Hospice sector complains that there are not enough chaplains, social workers, or CNAs to staff their agencies. However, the problem is that professionals are not being paid commensurate to their training and agencies overwork them.  Consequently, this shift in priority and mission creates a huge space for doulas to be hired in homes and nursing homes. While hospice chaplains are mandated to minister within the strict requirements of Medicare and Medicaid, doulas are not constrained by corporate hospice practices and time constraints. The doula is an independent contractor and that flexibility can only be beneficial to hospice patients.

My readers often ask what the difference is between a social worker and a doula. There are 7 different types of social workers. Hospice social workers help clients and patients navigate the planning for end-of-life care, connect to other resources and support, address crisis situations and stress, and educate families on how to advocate for themselves. They must have an undergraduate or a graduate degree in social work and be licensed.

I recently was privileged to interview two amazing women who are Doulas.

I met Deb Holtz on LinkedIn. She is a lawyer by trade and lives in the St. Paul area. She had performed a lot of advocacy work in government for people with disabilities during her legal career. She has a heart for healing. She’s been a doula for four years and completed her training with Deanna Cochran’s Quality of Life Care, LLC. She said that what she finds most satisfying about her work is watching patients make a peaceful transition.

Marggie Hatala, RN, and Certified Doulagiver Trainer. She received her training with Suzanne O’Brien and Doulagivers. She believes that Americans are not comfortable facing mortality. “What kind of a society pressures the elderly to live like millennials – running marathons at age 80.” She is the author of Life as a Prayer.

Where does one search for a Doula training program?

Four names and training centers kept surfacing for certified (EOL) Doula training:

1. Deanna Cochran – Hospice RN. Founder of Quality of Life Care Doula Training, LLC. Founder of the EOL Practitioner’s Collective. Council Chair for EOLDA. Board member of the Doula Council for NHPCO. Author, Accompanying the Dying: Practical, Heart-Centered Wisdom for End-Of-Life Doulas and Health Care Advocates.
2. Tarron Estes – Founder of the Conscious Dying Institute. Boulder, Colorado.
3. Suzanne O’Brien RN – Doulagiver Founder, Speaker, and Author. NYC. Board member of the National Hospice and Palliative Care Organization (NHPCO). Founder of the International Doulagivers Institute. She assisted in developing the Doula program for some hospice providers.
4. Dr. Karen Wyatt MD –Family Practice and Hospice Physician. Author, What Really Matters: 7 Lessons for Living from the Stories of the Dying. Boulder, Colorado.

Readers of my blog can find information about doula training online through all of these sites.

How can a consumer find the services of an EOL practitioner? Doula Deb Holtz said you can obtain information on training and find a Doula Directory at the website of the International End-of-life Doula Association (INELDA).

What is the fee for Doula services? It varies and depends on the needs of the patient and family. Fees can be arranged hourly or by contract for an extended period. Doulas charge anywhere from $25 to $50 an hour. Many Doulas utilize a sliding scale.

We can be better at dying well.

I would love to see legislation to take the dying process in our country out of the hands of Corporate America.

Dying should be tended to in the arms and hearts of nonprofit hospice providers, for-profit providers who place patients as primary stakeholders, and the emerging doula movement.

The EOL Doula Council within the NHPCO plans to evaluate the efficacy of doula’s collaboration with hospice services by conducting research to establish best practices for the future. The hospice industry desperately needs their assistance.

“We do not find our own center, it finds us. The body is in the soul. It is both the place of contact and the place of surrender.” Author Richard Rohr. What the Mystics Know, 2015.