Work of a Death Doula

You might be wondering what a Death Doula is or does.  At first glance, the term might sound a bit macabre. Or perhaps you’ve heard the word doula used in relationship 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.

Death Doulas – also called End-of-Life (EOL) Doulas or soul midwives assist in the dying process. Both types of Doulas coach human beings during a major life transition from one place to another (one at the front end of the spectrum and one 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 – EOL Doulas can be hired privately to work with patients (and their families) who have a progressive, chronic illness that is life-altering (but not terminal).

Doulas can be hired at any stage of illness to provide comfort and to help enhance a patient’s quality of life before death. Therefore, this movement is a major contributor to the emerging field of palliative medicine. The primary role of the EOL Doula is to accompany the dying person through the last months, weeks, and hours of life. The 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. Also, they may try to fulfill a patient’s final priorities 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. Patients can create a plan for a good death. There is much to ponder during any profound period of transition and our culture tries to highlight significant milestones. Dying is the primary, temporal landmark in our life; a great achievement. It is a summons to gather and bestow honor upon the dying and a time to acknowledge and celebrate this meaningful juncture between our actuality and our potentiality.

The EOL 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, singing, beloved poems, invited family and friends, favorite food and beverages (if early enough in the process), grooming comfort, hand-holding, fresh air, time on the patio basking in the sun, 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 and deterioration of the digestive system, encouraging a family member not to push eating as an antidote for their own grief or helplessness, and to understand that their loved one can see images of the next world at the end.     

Doulas serve dying patients at home, in long-term treatment facilities, and in the hospital. They are not medical providers nor hospice clinicians, 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 to eventually incorporate Doulas into care delivery as volunteers, independent contractors hired by families, or as agency staff.  

As well, Doulas may have a professional background in former careers as Social Workers, RNs, or Chaplains and that experience is invaluable. Doulas and Chaplains are trained to create space at the moment for the variable needs of the patient and family. 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 recently). There is so much potential in this discipline for the 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 social/emotional presence for patients when the family cannot be present. They provide another “set of eyes” for the needs of a patient.

As a hospice Chaplain, the background required is extensive: A Master Degree in Religious Studies or a Divinity Degree is the foundation to which layers of hospice education and bedside practice are layered. In addition, the completion of four Clinical Pastoral Education Units is mandated and is equivalent to two years of additional study (which includes 1,200 hours of clinical pastoral education, formation, and internship.

Subsequently, the post-certification process and ecclesiastical endorsement take an additional six to nine months of paperwork and interviews. What a Chaplain brings to the dying space is similar to what a Doula brings, but includes expertise to address the religious component. 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.

One of the most helpful exercises in my formation as a Chaplain was taking the Enneagram Spiritual Inventory. Our professors stated a profound truth about the pastoral care of a patient: “If you do not understand your own shadow side or the ways in which you tend to sin (miss the mark), you do not possess the humility nor the wisdom to be a companion on the spiritual journey.    

My ministry with patients included the following: communion distribution, funeral planning, arrange sacraments, explain Scripture passages, spiritual direction, deliver eulogies, perform religious rituals, religious education, clarify denominational issues, and discuss the theology of the afterlife.

Also, Chaplains must be trained in grief work, forgiveness issues, sacred music, and be familiar with the particular Bibles of each of the three branches of Christianity, and the Sacred Scriptures of three of the five major monotheistic religious traditions – Judaism, Christianity, and Islam. To have knowledge of Buddhism, Hinduism, and Native American spirituality is also of great benefit.

Chaplains and Doulas learn and practice the art of active listening. We are companions for the journey. We open our hearts to allow the patient to freely find their own.

So where does the Doula Movement fit in? Among other roles, Doulas fill the gap between medical care and hospice. Unfortunately, it is an ever-widening gap for many reasons which I will address in my book. Suffice it to say, we need more professionals to work in EOL care. As current data demonstrates, there is a “tsunami” of human beings nearing the end-of-life within the next two decades. The for-profit hospice industry is not handling EOL dying competently as it stands now. And they are 85% of the available providers.

We live in a death-denying culture; a culture that puts time limits on grieving. Fortunately, there has been a positive death movement occurring across America in recent years and the EOL Doula Movement is an aggregate of that fresh and healthy perspective. We are experiencing a groundswell – a change of thinking at the grassroots level – that is calling us to view terminal illness and the dying process in creative, healing, and holistic ways.   

Conversation and 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 pro-active 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. Doula Movement 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 have 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.”

A famous actor once said: “I’m not afraid of dying, I just don’t want to be there when it happens.” Doulas and hospice personnel are trying to create a space and a “birthing plan” so that we do want to be present “when it happens” (or as alert as long as possible) and so will our families.

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 the Doula training. It assures core proficiency, aptitude, and mastery.

The for-profit Hospice sector complains that there are not enough RNs, 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.  

The money is not going to the hard-working, in-the-trenches hospice clinicians, it is going primarily to the CEOs, Administrators, Executive Directors, Medical Directors, Marketing Reps, and Private Equity Firms/Investors. Unfortunately, for the last 30 years or so, the care of our dying has gradually been turned over to the commercial business enterprise. Our dying patients, families, and even the hospice clinicians have become commodities in the attempt to create wealth.

Consequently, this shift in priority and mission creates a huge space for Doulas. While Hospice Chaplains are mandated to minister within the strict requirements of the government, doulas are not constrained by large practices and time constraints. The flexibility and independence of that reality can only be beneficial to patients.

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

I “bumped into” 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 for 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.

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 within Palliative Care.

The EOL Doula Council within the NHPCO plans to evaluate the efficacy of Doula collaboration with hospice services by conducting research to establish best practices for the future.

I’ll keep you posted on that progress.

The hospice industry desperately needs their assistance.

I have added my wish for an EOL Doula to help me and my children to my advanced directive and have educated my children about their practice. 

“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.

Work of a Death Doula
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4 thoughts on “Work of a Death Doula

  1. Thank you for sharing your wisdom & experience, MaryClaire. There are some great insights here. You have lots to share. God bless you for your caring heart.

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