(This article, used with permission, first appeared in International End of Life Doula Association (INELDA) newsletter in March 2023 . The author is the President of INELDA, an end of life planner, and host of Heirloom & Legacy Podcast.)
According to a journal abstract from Social Science & Medicine, “People in Kwahu-Tafo, a rural town in Southern Ghana, regard a peaceful death as a ‘good death.’ ‘Peaceful’ refers to the dying person having finished all business and made peace with others before his/her death and implies being at peace with his/her own death. It further refers to the manner of dying: not by violence, an accident or a fearsome disease, not by foul means and without much pain. A good and peaceful death comes ‘naturally’ after a long and well-spent life. Such a death preferably takes place at home, which is the epitome of peacefulness, surrounded by children and grandchildren. Finally, a good death is a death which is accepted by the relatives.”
So, on Saturday, February 18, 2023, when the Carter Center announced that former President Jimmy Carter would be receiving hospice care at home, I was both saddened by what this decision essentially means for the former president and intrigued by the possibility of having broader discussions about hospice and, more specifically, end-of-life doulas.
At the height of the pandemic, I became an end-of-life doula. It is not that I am comfortable with death and dying; I mean honestly, who is? I am, however, passionate about individuals having their affairs in order and creating an end-of-life plan regardless of the circumstances of their death. It is a fact that too many of us are not prepared for a good or unforeseen death.
End-of-life doulas assist with the physical, emotional, and spiritual aspects of death. They can encourage individuals and their families and help ensure they are surrounded by people who make them feel supported and loved. They can also help them find a sense of closure and peace.
While it is not certain that Carter has engaged with an end-of-life doula, deciding to go into hospice care requires consultations with a team of health advisors, family, and possibly a nursing assistant or a doula. At age 98, he has led an incredible life, even while being plagued by numerous ailments. Making the conscious decision to spend his final days in the comforts of his home, surrounded by family, friends and heirlooms, is a treasured gift that many of us would welcome.
While we may not all have the resources that the former president has, I would argue that we all have the opportunity to make the choice to receive end-of-life care in the manner we feel most appropriate. Unfortunately for the former president and so many others who enter into hospice care, whether at home or a facility, hospice generally means death is imminent within a six-month period. While it is a hard reality to face, having a plan in place could alleviate the apprehension we have at our end-of-life transition.
It is crucial that all of us have agency over our deaths, just as we have agency over our lives. I would like to wish Carter and his family peace and blessings during this time, and encourage you to find out more about his amazing legacy at cartercenter.org.
Angelyn C. Frazer-Giles can be contacted at https://inelda.org/. You can find her at Heirloom Estate and Legacy Preservation and LinkedIn. Her podcast can be found on Apple Podcasts, Spotify, Stitcher, and Google Podcasts.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers
who support mentally competent adults as they navigate their end-of-life journey.
Established in 2004, FEN seeks to educate qualified individuals in practical,
peaceful ways to end their lives, offer a compassionate bedside presence and defend
a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law.
Final Exit Network is a 501(c)3 nonprofit organization.
1. I’m sure doulas do good. But there needs to be credentialing. Deciding one day to be an end of life doula is not like deciding to be a doctor, nurse, psychologist, etc. When these people hang out their shingle we know what education they’ve had, how they get licensed, what they do, and what they charge. It seems like anyone can hang out a shingle saying “DOULA.” Seems risky for a dying person to have one at their bedside.
2. There is no guarantee that hospice can relieve pain, anxiety, depression, immobility, or the absence of activities that brought joy.
Offering these possibly good solutions as a panacea to a difficult end of life can bring false promises.
The Carter Center reports that former U.S. President Jimmy Carter decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention. He has the full support of his family and his medical team. I believe he is a good man who led a good life, I hope he has a good death.
I second what Faye Girsh wrote. I have a friend who began practicing as a death doula after taking 2 online courses. I’m all for the death doula movement and knowing my friend and her personal, educational, and vocational background I suspect she does a good job. However, it raises the issue of credible certification of and practice standards for death doulas. Their potential clients should remember the venerable adage to “Let the buyer beware.”
I admire Jimmy Carter for facing death in his customary frank and forthright manner. But we have no indication that he consulted a death doula and know nothing of his opinions about their work in spite of Ms. Frazer-Giles’ speculation about what he might have done.
There is no universally recognized local, regional, or federal authority, regulatory or accrediting body monitoring for end-of-life doulas. However, several organizations offer training and in-house certification.