Death midwife

A death midwife,[1] or death doula,[2] is a person who assists in the dying process, much like a midwife or doula does with the birthing process. It is often a community based role, aiming to help families cope with death through recognizing it as a natural and important part of life. The role can supplement and go beyond hospice. Practitioners perform a large variety of service, including but not limited to creating death plans, and providing spiritual, psychological, and social support before and just after death. Their role can also include more logistical activities, helping with services, planning funerals and memorial services, and guiding mourners in their rights and responsibilities.[1]

The presence of the role of a modern death midwife has been evolving in recent years, including a controversy over the regulation process for the position and the use of the term "midwife" as opposed to doula, and bills proposed to regulate the process and provide licenses for death doulas. The terms "End of Life Guide," "Home Funeral Guide" and "Celebrant" are also used.[3] The field has also seen a significant rise in training organizations, which train hospitals along with individuals.[4]

Historical role of death midwives

Women's Perspective

Women have long had a hand in handling the affairs of the deceased, especially in tasks in parallel with the natural burial movement. Historically, women have most often cared for the dead, doing the bulk of the preparation work for the burial. It was seen as part of the woman's role in a family to care for the deceased, just as she cared for the children and the sick. However, it was the rise of the practice of embalming and the funeral industry that pushed women out of the practice around the time of the Civil War.[5]

This traditional role of women in burials has given rise to the modern female-led death midwife movement. Many aim to reconnect people with historical death practices of caring for their own. Death midwives promote family-led home-based care and empower families to take back the responsibility and privilege of bathing, dressing, and mourning loved ones in the privacy of their own homes. They also advise about alternatives to the industry standard of cremation or embalming,[5] such as green or natural burial.

Today, we see the distress of end of life care taking a toll on the caregivers,[6] and historically that responsibility has fallen on women.[7]

History of Palliative Care Doulas in Clinical Medicine

The rise of death midwives is a relatively new movement, with private certification programs following the legacy of pilot programs in clinical care. One of the first movements was started out of New York in 2000, a volunteer program focused on pairing so-called "doulas" with terminally ill people. The program was funded by the Shira Ruskay Center of the Jewish Board of Family and Children's Services and NYU Medical Center, and began pairing five volunteers with patients. The program was ultimately named "Doula to Accompany and Comfort." The volunteers went through training on both clinical and spiritual aspects, including but not limited to the complexities of end of life health care, physical issues like incontinence and disorientation, and hope in the face of death.[8][9]

The next major clinical implementation of the death doula methodology was at the Baylor Supportive and Palliative Care Service and Clinical Ethics Committee shortly after the establishment of the New York program. Members of this department including palliative care nurses, chaplains, and therapists worked together to create a program with in consultation with the New York program. From there, a program involving a 6-week training program was formed to work hand in hand with clinical medicine, wherein doulas are referred by nurses, social workers, and therapists, and must be specifically ordered by the doctor. After being ordered, volunteer trained doulas are matched by the hospital's revered to individual cases. While the Doula to Accompany and Comfort program provided outpatient services as well as inpatient, the Baylor program is only for inpatients.[10]

College of Midwives of British Columbia

There has been controversy over the label of "Death Midwife." The College of Midwives of British Columbia has called for death midwives to stop using the label of midwife, specifically with the Canadian Integrative Network for Death Education and Alternatives (CINDEA). The basis of the case is that Louise Aerts, the executive director of the College of Midwives, claims that the term "midwife" is specifically reserved for the traditional sense of the word in relation to birth. The Health Professions Act protects its usage.[11] In response, the CINDEA website has recently added the following disclaimer to their website: "The role and practices of death midwives are frequently referred to on this website. Death midwives are not conventional midwives (who deal with birthing) or health professionals, nor are they registered with any of the Colleges of Midwives in Canada.[12]"

Senate Bill 796

There is currently no national body that oversees certification requirements for death midwifery, and little regulation. In comparison, there are multiple regulatory bodies that ensure the education and practices of traditional midwives, such as The Nursing and Midwifery Council.[13]

However, there have been a few measures to regulate and license the practice of being a death midwife. In 2009, Senator Vicki Walker from Oregon introduced SB 796. The bill aims to regulate "death care consultants," in other words, death midwives and related professions. After the bill passed in July, death doulas were required to be licensed by the Oregon Mortuary and Cemetery board. The test they must pass to gain a license covers Oregon and federal laws related to the care of dead bodies.[14]

Responsibilities

The role of a death midwife is to educate and empower families to exercise their innate right to care for their own dead. Death midwives or doulas "provide emotional, spiritual, and physical support at an intensely personal and crucial time. They assist people in finding meaning, creating a legacy project, and planning for how the last days will unfold. Doulas also guide and support loved ones through the last days of life and ease the suffering of grief in its early stages".[15]

Death is a situation that no one can completely prepare for. Additionally, many people don't have much experience with people close to them dying. Because of this, when it comes to the time to deal with dying there are a lot of questions and uncertainty. Pain management is only one part of end of life care; another part, of equal or greater importance at the end of their life, is the psychological aspects, including the management of close relationships.[16] A doula's support can relieve stress and burdensome tasks from the family in order to provide care for the dying individual but also gives the individual psychological and emotional support in the process.

Although the specific responsibilities of a death doula vary from certification program to program, there are certain parallels through each. The services provided by a death doula can generally be broken down into two categories.

Information
  • providing the family with information about a broad spectrum of end-of-life choices, including home funerals and natural burials
  • providing the family with information about advance directives and other forms, especially those needed for home funerals
  • providing families from culturally diverse communities with the same information as above, which helps avoid a gap in care[17]

Support
  • building a relationship with the terminally ill, and advocating for their needs and wishes
  • providing spiritual and emotional support for the terminally ill and their family
  • helping the family in administering the terminally ill's final wishes[18]

Motivations

Many people who become death midwives are “volunteers who feel strongly about creating a safe space." [19] They are caring individuals who want to support patients in their end of life stages. Another reason people are attracted to this field is that “they want the contact, the involvement and they are drawn to the mission - making sure someone is not facing this [death process] alone”.[20] People who become death doulas are there because they want to help the family and the patient through the whole process, as a neutral third party. Though most death midwives are volunteer based, the funding source for their roles still remain unknown.[17]

Certification

There are many private organizations that offer education or certification programs, including the non-profit A Sacred Passing,[21] the funeral home Sacred Crossings,[22] Beyond Hospice,[23] Earth Traditions,[24] non-profit (for profit) INELDA, the International End of Life Doula Association, and Quality of Life Care. The International End of Life Doula Association (INELDA) was founded in 2015. Their mission statement says they are “dedicated to bringing deeper meaning and greater comfort to dying people and loved ones in the last days of life”. They emphasize the need for a doula certification process to create a standard for the field. Anyone can become a death doula and training opportunities are offered internationally. The steps included for certification include hands-on work in the field with evaluations and exams to display sufficient knowledge.[25]

Certification is not available in traditional educational environments; it usually is offered in shorter, paid training sessions. However, since there is no centralized organization for death doulas the training involved often varies by location causing inconsistencies within the role.[17] The Doula Program in New York is a volunteer organization that focuses on the relationship between the doula and the dying. Instead of certification, volunteers submit an application in a pool of around 300, and around 12 are admitted each cycle.[26]

Public certification programs associated with hospitals and more closely tied with clinical care are restricted to a few pilot programs. These often involve training spanning multiple weeks similarly to the private programs, however, they are often more related to palliative care and putting the terminally ill patient in a more comfortable situation through clinical means and mental health counseling rather than focusing so much on the spiritual and emotional support aspect. These programs include Baylor University Medical Center's Support and Palliative Care Service's Doula to Accompany and Comfort Program, as well as New York University Medical Center's Department of Social Services nonsectarian volunteer doula program.[10]

"Doula" name derivation

The term Doula originally came from ancient Greece, where the term was used to define an individual as a servant or in some extreme cases, a slave. The term doula was more commonly used again in roughly the 1960s where it often defined an individual who assisted in the birthing process. This individual was often a woman, one that not only helped during the birthing process but also provided support for women before and after the birth as well. Recently the term Death Doula has been coined to refer to a trained person who provides a dying individual and their family with assistance and resources.[10]

Associated fields

Hospice care

The role of a death midwife is consistent with the more holistic approach taken in hospice care. As a result, some hospitals and hospice centers that deal with end of life patients have had their own staff's counselors go through death doula training. This can be carried out through the organization International End of Life Doula Association (INELDA), which provides training sessions across four countries.[27]

Alternative death care movement

The death midwife phenomenon is associated with the "Death Positive" movement. It has also been linked to increasing interest in alternative methods of dealing with remains, including green burials, conservation burials, and home burials.[27] Death doulas are trained to have the knowledge to provide the family with after-life alternative death care options. A goal of many death doulas is to provide information about alternatives to cremation or conventional burial, such as natural or green burial, and "flameless cremation" or alkaline hydrolysis, which is legal in 14 states.[28] Other environmentally sustainable methods of final disposition are being developed, including human composting, or "recomposition."[29]

See also

References
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  2. "The rise of the death doula - Macleans.ca". 2015-03-15. Retrieved 2016-07-08.
  3. "National Home Funeral Alliance- What we call ourselves". homefuneralalliance.org. Retrieved 2018-07-01.
  4. Blumberg, Antonia (2017-06-05). "A Growing Movement Of 'Death Doulas' Is Rethinking How We Die". Huffington Post. Retrieved 2017-12-23.
  5. Aran, Isha. "The death midwife: Women were the original undertakers". Splinter. Retrieved 2017-11-20.
  6. McGhan, Gwen; Loeb, Susan J.; Baney, Brenda; Penrod, Janice (2013-04-12). "End-of-Life Caregiving: Challenges Faced by Older Adult Women". Journal of Gerontological Nursing. 39 (6): 45–54. doi:10.3928/00989134-20130402-01. ISSN 0098-9134. PMC 4103648. PMID 23641930.
  7. Washington, Karla T.; Pike, Kenneth C.; Demiris, George; Parker Oliver, Debra; Albright, David L.; Lewis, Alexandria M. (2015-10-20). "Gender Differences in Caregiving at End of Life: Implications for Hospice Teams". Journal of Palliative Medicine. 18 (12): 1048–1053. doi:10.1089/jpm.2015.0214. ISSN 1096-6218. PMC 4677542. PMID 26484426.
  8. Kleinfield, N. R. (2004). "In Death Watch for Stranger, Becoming a Friend to the End". The New York Times. ISSN 0362-4331. Retrieved 2017-11-20.
  9. Corporon, Kathleen (2011-10-01). "Comfort and Caring at the End of Life: Baylor's Doula Program". Baylor University Medical Center Proceedings. 24 (4): 318–319. doi:10.1080/08998280.2011.11928748. ISSN 0899-8280. PMC 3205157. PMID 22046067.
  10. Corporon, Kathleen (October 2011). "Comfort and caring at the end of life: Baylor's doula program". Proceedings (Baylor University. Medical Center). 24 (4): 318–319. doi:10.1080/08998280.2011.11928748. ISSN 0899-8280. PMC 3205157. PMID 22046067.
  11. "The good (mid)wife? B.C. College of Midwives says 'death midwives' can't use title". CBC News. Retrieved 2017-11-06.
  12. "CINDEA". www.cindea.ca. Retrieved 2017-11-06.
  13. "The Nursing & Midwifery Council". www.nmc.org.uk. Retrieved 2017-11-06.
  14. "Death midwives help families cope with end-of-life care". CBC Radio. Retrieved 2017-11-06.
  15. "Home - INELDA". INELDA. Retrieved 2018-06-02.
  16. Steinhauser, K. E.
  17. Rawlings, Deb; Tieman, Jennifer; Miller‐Lewis, Lauren; Swetenham, Kate (2019). "What role do Death Doulas play in end-of-life care? A systematic review". Health & Social Care in the Community. 27 (3): e82–e94. doi:10.1111/hsc.12660. ISSN 1365-2524. PMID 30255588.
  18. Lentz, Judith C. (11 January 2013). "Palliative Care Doula: An Innovative Model". Journal of Christian Nursing. 31 (4): 240–5. doi:10.1097/CNJ.0000000000000103. PMID 25296488.
  19. Baldwin, Paula K. (2017-04-26). "Death Cafés: Death Doulas and Family Communication". Behavioral Sciences. 7 (2): 26. doi:10.3390/bs7020026. PMC 5485456. PMID 28445392.
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  21. "About A Sacred Passing - Death Doula Services & Training". A Sacred Passing. Archived from the original on 2017-12-23. Retrieved 2017-11-06.
  22. "The Art of Death Midwifery | Sacred Crossings". sacredcrossings.com. Archived from the original on 2017-11-13. Retrieved 2017-11-06.
  23. "Beyond Hospice". beyondhospice.com. Retrieved 2017-11-06.
  24. "Death Midwife Directory". Earth Traditions. Archived from the original on 2017-01-15. Retrieved 2017-11-06.
  25. "Home".
  26. "Doula Program to Accompany & Comfort - Program Description". www.doulaprogram.org. Retrieved 2017-11-06.
  27. Blumberg, Antonia (2017-06-05). "A Growing Movement Of 'Death Doulas' Is Rethinking How We Die". Huffington Post. Retrieved 2017-11-06.
  28. "People have started dissolving loved ones' dead bodies as a greener alternative to burying or cremating them". Business Insider. Retrieved 2018-06-02.
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