What is a “Death Doula” and Why is Compassion & Choices so Interested?

Most people have heard of doulas, specially trained people who help pregnant women during pregnancy, labor, birth, and immediate postpartum by providing “emotional, physical, and informational support”.

My daughter used a doula for both of her children and was so happy with the results that she is considering taking the training to become a doula in the future.

But now, there are “death doulas” that have nothing to do with birthing.

As Wesley Smith wrote about in a 2014 article titled “Good Grief: Now It’s “Death Doulas”, there was an op-ed in the LA Times about the Hippocratic oath and the terminally ill by a journalist and medical professor who wrote:

“If we allow medicine to prolong life, should we also allow it to shorten life for the terminally ill?

We could, however, skirt the controversy entirely: What if we created another class of medical professionals known as death doulas, who could fill a gap between treatment doctors and hospice workers?” (All emphasis added)

But “death doula” idea continued and in 2017,  the “National End-of-Life Doula Alliance (NRDA) was formed and even more importantly in 2018:

“a special council within The National Hospice and Palliative Care Organization (NHPCO), the leading hospice and palliative care membership organization in the US, was held. The purpose of the special Council is to provide information and resources to its members, affiliated organizations, and the public regarding the role of end-of-life doulas.” (Emphasis added)

Unfortunately, while the NHPCO “opposes MAID (medical aid in dying) as “a societal option to alleviate suffering”, the American Academy of Hospice and Palliative Medicine (AAHPM) has had a position of “studied neutrality” on the issue of medically assisted suicide since 2007.

According to a New York Times June 2021 article “Death Doulas’ Provide Aid at the End of Life” , there are nearly 800 members in the National End-of-Life Doula Alliance with membership nearly doubling in the past year and increasing interest in training programs such as the International End-of-Life Doula AssociationDoulagivers, and the Doula Program to Accompany and Comfort.

Death doulas do not have to be medically trained and death doula training and certification programs can cost as little as the $189.00 holiday special online course at the International Association of Professions Career College for 6 weeks part-time.

According to the New York Times, death doulas “don’t get involved in medical issues” but rather, “they support clients emotionally, physically, spiritually and practically.” Prices for these services “range from $25 an hour on up, although many do it voluntarily.”

WHY IS COMPASSION & CHOICES INTERESTED IN DEATH DOULAS?

Last month, Compassion & Choices (the largest organization attempting to pass assisted suicide laws in every U.S. state) filed an amicus brief in the federal court case Full Circle of Living & Dying v. Sanchez in support of a lawsuit to protect “to protect the First Amendment free speech rights of death doulas in California.”

The plaintiff Full Circle of Living & Dying is described by Compassion & Choices “as a non-profit organization that provides death doula services and home funerals”.

The defendant in the Full Circle of Lining & Dying lawsuit is the California Cemetery and Funeral Bureau which issued a 2019 order to the death doula plaintiffs to:

“immediately discontinue advertising and operating as a funeral establishment until a license is issued by the Bureau” and “threatened fines of up to $5,000 if Full Circle continued to operate without a license.”

Compassion & Choices’ chief legal advocacy officer Kevin Diaz argues in the amicus brief that:

Full Circle “has a disclaimer on its website that they are not funeral directors, do not offer funeral home services, and do not operate out of a funeral home”; that “Full Circle does not need a physical location for its services and the cost of obtaining such a location far exceeds the non-profit’s small budget.”

and added that

“a ruling in favor of the California Cemetery and Funeral Bureau “will force most, if not all, death doulas out of practice.” (Emphasis added)

As Kim Callinan, the President and CEO of Compassion & Choices explains in her 2021 article “Medical Aid in Dying: The Role of Death Doulas” for the National End-of-Life Doula Alliance newsletter:

“Death doulas can play a key role in shifting end-of-life care from a paternalistic to patient-directed system by bringing non-judgmental support to patients and serving as their advocate. This is particularly needed for patients who would like the option of medical aid in dying. All too often, interested and eligible patients are unable to navigate the complicated, multi-step process to access medical aid in dying (aka medically assisted suicide); too many unfortunately die suffering. (All emphasis added)

CONCLUSION

Over more than 52 years, I have cared for many dying people, both personally with friends, my mother and daughter and professionally in cancer units, critical care and home hospice. The people I have cared for range from babies to the very elderly.

My interest in people with terminal or life-threatening illnesses started when I first became an RN in the late 1960s and saw people with terminal cancer routinely secluded in in a private room at the end of a hall.

I asked the more experienced nurses how I should approach these patients and if I should be cheerful or solemn.

These nurses said they didn’t know the answer either so I had an idea. I decided to go visit these patients after I finished my shift and just ask to sit down and speak with them. Many of these wonderful people told me how isolated and lonely they felt when friends and family members treated them differently and we would talk about what they wanted both before and after their expected deaths.

I shared what I learned with the other nurses and family members who were relieved to know how they could help.

Whether or not these people were in hospitals, institutions or at home, the goal was always to help them live as well as possible until death. It was imperative that these people felt loved, respected and cared for even when they seemed to be unconscious. I also saw that the person’s relatives and friends also needed understanding and support. It helped that I personally knew how hard it can be to lose a loved one.

I feel privileged to have cared for my loved ones, friends, patients and their families and I never witnessed an excruciatingly painful death or was tempted to help end a life because I knew how to help.

It will be interesting to see what happens in the Full Circle of Living & Dying v. Sanchez case but I know that no matter whether a person is physically healthy or terminally ill, assisting a suicide is never good healthcare!

2 thoughts on “What is a “Death Doula” and Why is Compassion & Choices so Interested?

    • Dear Lisa Marie,
      Thank you for your correction and I made the correction on my blog. Unfortunately I was not able to access the article in the ACP journals.
      Nancy Valko, RN ALNC

      Like

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