Dying isn't a medical event. It is a human one. We have accompanied each other through the bookends of life-birth and death-since the beginning of time. - International End of Life Doula Association (2022)
Probably like many of you, I have been to too many "Celebrations of Life" these past few years, witnessed too many poor end-of-life transitions that may be due to COVID policies, or even compassion fatigue. I am old enough to remember when hospice was a new public concept and have recently heard about another new idea, which may help avert what has been discussed in PCM journal as "prolonged grief." However, views of traditions surrounding death, such as funerals and other ways to memorialize loved ones, are shifting. Death doula associations are seeing an increased interest from people who are seeking death doulas and those who wish to become what is now known as death doulas.
For thousands of years and in many cultures, there are rituals and helpers who assist in bringing people into this world, known as birth doulas. Also not new to many cultures are end-of-life supporters who have assisted when a person is leaving this world; these are becoming recognized in Western culture and known as death doulas. Other names may be used: end-of-life coaches/life guides, soul midwives, end-of-life doulas, or death midwives.
These are nonmedical, trained individuals who guide and support the transition once a person is diagnosed with a life-ending illness. I say "nonmedical"; however, many with professional licenses or credentials (e.g., registered nurses, social workers) take training to become doulas or to enhance skills at their current job. They are trained to care for someone holistically (physically, emotionally, and spiritually) at the end of life. These people are often hired by patients or family members when a terminal illness is identified. Typically, these are private-pay positions (often by the patient or family member/caretaker) and not yet covered under insurance, although some hospice, nursing homes, and even oncology centers are hiring doulas. There are no government licenses for end-of-life doulas, and there are few training programs, so do your research.
What do end-of-life doulas provide ("What is a Death Doula," 2022)? Death doulas can:
* Attend to the emotional, psychosocial, and spiritual aspects of dying and caregiving;
* Suggest ideas for optimal physical comfort;
* Perform life review-validate one's sense of purpose;
* Help create positive, empowering end-of-life plans, including assistance with making memories, funeral arrangements, obituaries, and memorials;
* Educate patients and families on any new and progressive options of home wakes and natural burials;
* Advocate for the patient and family;
* Serve as the eyes and ears of the hospice program; and
* Provide assistance with locating bereavement resources.
You may ask, "What are the differences between these guides, and what hospice provides?" I had the same question and asked Suzanne B. O'Brien, RN. Her background includes oncology, hospice, and palliative nursing. Seeing gaps in end-of-life care, she has been instrumental in training end-of-life/death doulas, who complement the work of the hospice team. Suzanne is a founding member of the National Hospice and Palliative Care Organization (NHPCO), End of Life Doula Council, and former Vice President and founding member of the National End of Life Doula Alliance (NEDA). Readers may also be interested in her 2015 book: A Guide to Learning the Invaluable Skills of How to Care for Someone at the End of Life. To date, the doulagivers' Level 1 End of Life Doula Family Caregiver Training has had more than 150,000 people register (S. B. O'Brien, email communication, July 6, 2022). Approximately 3,000 registrations per month occur for Level 1 training (see Box 1). A sample of frequently asked questions is cited from this personal email communication:
Question: What is the difference between a hospice nurse and an end-of-life doula?
Answer: Time and roles. The hospice nurse is the medical manager of the terminal patient, with limited time at the bedside. The doulagiver is the nonmedical professional that is the eyes and ears of the case with no time limitations. The doulagiver alerts the hospice team to any changes in the patient's presentation so that the hospice nurse can assess and update the care plan for maximum daily comfort of the patient (the goal of hospice). Doulas, since usually private pay, can stay longer hours if the family chooses.
Question: What is the difference between a hospice volunteer and an end-of-Life doula?
Answer: An end-of-life doula can do everything EXCEPT give a medication and do any form of medical treatment or wound care. The hospice volunteer needs to follow Medicare regulations that prohibit any form of touching, moving, feeding, bathing, toileting, etc. The hospice volunteer in most U.S. states is limited to a maximum weekly bedside visit of 4 hr. The average volunteer visit is 1-2 hr a week. This does not provide the adjunct support that patients and families so desperately need at this stressful time.
Question: Does insurance cover the services of an end-of-life doula?
Answer: No. End-of-life doulas are private pay. All "companion" services such as Home Instead, Visiting Angels, and Comfort Keepers, etc., are all private pay. Most end-of-life doulas have a sliding scale payment option.
Question: Can an end-of-life doula help make funeral arrangements for me?
Answer: Yes. An end-of-life doula has a "scope of practice" that includes everything from the time of a terminal diagnosis to helping patients and families as the illness progresses, to the vigil, time of death, after death care, understanding and honoring grief, and, finally, recover of life after loss.
Question: Is there a government licensure for end-of-life doulas?
Answer: No. End-of-life doulas are a nonmedical profession. Just like the establishment of birth doulas 40 years ago. This is not regulated by a government license.
Question: Are there any national organizations regulating the standards and scope of practice for the end-of-life doula profession?
Answer: YES. (NEDA) The National End of Life Doula Alliance has set a national practicum with Core Competencies for the practice of professional end-of-life doulas. All end-of-life doulas who pass the assessment receive the NEDA National Credential and can become members of the national membership organization.
Question: Does hospice approve of end-of-life doulas?
Answer: YES. The National Hospice and Palliative Care Organization (NHPCO) is the membership organization for all the hospices in the United States. They have just put together the End of Life Doula Council to be able to share with hospices and families how the professional end-of-life doula can assist and complete the hospice team to fill in "the gaps in care" and allow for the best end-of-life experience for both the patient and their loved ones.
Just like birth, there is only one chance to make the end-of-life experience go well. These special people may be the golden bridge between life and death.
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