The process of dying can be lonely and scary. Family members may be distraught and overwhelmed. Friends and relatives stop calling and visiting, not knowing what to say. The isolation is soul crushing.
This was the situation within my own family when my son Michael in Denver stopped treatment after two years of brutal chemotherapy for stage 4 cancer and went into hospice care at home. His wife and two preteen children are doing the best they can. But no other family members live close enough to offer much other than short visits and phone calls. Besides, he needed someone to talk to other than family — a friendly shoulder experienced in end-of-life support.
That’s when I started investigating death, or end-of-life, doulas. Although mostly unknown until recently, death doulas have experienced an uptick in awareness and inquiries, partially because of COVID deaths. As of April 2022, the National End of Life Doula Alliance (NEDA) had 1,300 members in 49 states, the District of Columbia and 12 other countries, up from 200 members in 2019. Formed in 2017 to bring professional standards of practice to the doula role, NEDA describes members’ work in this way: “End-of-life doulas provide non-medical, holistic support and comfort to the dying person and their family, which may include education and guidance as well as emotional, spiritual or practical care, from as early as initial diagnosis through bereavement.”
Like birth doulas, who support and educate mothers during pregnancy and labor, death doulas prepare and accompany the terminally ill on their journey. Their services vary according to the doula’s training and what is needed. That could be companionship, recording memories, playing games, helping with funeral arrangements and other tasks. But the main goal is to be present and connected to the person needing help.
Erica Greenwood, of Spirit and Soul Therapies in Wichita, became a doula after spending nearly two months in ICU by her dying father’s bedside. “I put lotion on his hands and feet, being present, spending quality time with him. It was a good experience for me, and for my dad and mom.”
The experience made her realize she could help others as well.
“I’m not bothered by death; it’s just something in my nature,” she said. She is a friendly ear, but sometimes she has to have a tough conversation with the distressed family to accept the fact the loved one is dying, especially when the patient does not accept it. “One woman I worked with kept talking about how she was planning to decorate for Halloween,” she said, “even though I knew she would die before then.”
Both Greenwood and Rebecca Adams, a death doula at Noble Passages LLC in Wichita, took courses developed by Deanna Cochran, a hospice RN and a pioneer in the field, who was the founding member of NEDA.
“There is no national board for death doula certification,” Adams said, “but there are more and more training courses now, in person and online, that offer their own certificates.”
Cochran, who lives in Texas, is the founder of the CareDoula School and author of the 2019 book, Accompanying the Dying: Practical, Heart-Centered Wisdom for End-of-Life Doula and Healthcare Advocates. She began to serve in this capacity in 2005, after the death of her mother. Cochran developed her certificate program, the first of its kind, in response to a flood of inquiries about her practice. “My education is aimed at helping reduce suffering at the end of life,” she said.
Her goal to bring awareness and legitimacy of end-of-life doulas within the healthcare industry took a leap forward when in February 2018 the National Hospice and Palliative Care Organization (NHPCO) invited end-of-life doulas to the table. Cochran and others educated hospice and palliative care organizations about what end-of-life doulas are and how to utilize them. Thus began the NHPCO End-of-Life Doula Advisory Council, which Cochran chaired for nearly three years.
“It is only a matter of time before end-of-life doulas are known just like the birth doulas are now,” she said.
For those who want to look into hiring a doula, Cochran and others have some advice:
• Put out the word. Let it be known you are seeking some end-of-life support through Facebook or other social media. Word of mouth is the best recommendation.
• If you google “death doula” or “end-of-life doulas,” you will discover training programs and articles on the subject. Some certificate programs have a directory of those who have taken courses.
• Just like anyone you would bring into your home for services, vet them. Get references. Tell them what services you need and find out what experience they have. How long have they been in the field? What training have they had?
• Trust your intuition. Does it feel safe?
• If the dying person is responsive, he or she will tell you if they want a doula to come back.
• Some doulas are bonded and have liability insurance, but other good doulas may not be business savvy or certified. Above all, you are looking for a caring person.
• Doula fees could be by the hour (usually $25 and up), a monthly retainer for a certain number of hours and services, or a flat rate for their entire service time. Be aware that doula services are not covered by Medicare or health insurance.
After doing the research, I asked my son and daughter-in-law if they were open to a death doula since they had a birth doula for their first child. To my surprise, they knew one who they had lost track of but had always liked. I was able to track her down at her full-time job in communications for a home health care agency. She had certifications, experience and a network of resources. She remembered Michael fondly and was honored we thought of her.
So far, she has met with him twice. She has led the whole family in meditation and had private conversations with Michael. Since his children are so important to him, she plans to take the kids on outings and see that they and his wife are offered tools for their well-being. Since we don’t know what Michael will want or need at this point, we are still working out financial arrangements as I write this.
As his mother, it is a relief to know if he is lonely or afraid, he has someone to comfort him. And it’s exactly what our family needs at this challenging time.
Contact Cecelia Green at
cecgreen1@comcast.net.
