Akhila and Donna Are End-of-Life Doulas, Not Funeral Directors
A decade ago, Akhila’s family was beset by tragedy. Her nephew, a young man full of potential, committed suicide. Not long after, her brother-in-law—the nephew’s dad—took his own life, wracked by grief over his son’s passing. This experience set Akhila on a journey that led her to become an end-of-life doula to help families honor their deceased loved ones through a home funeral, an ancient tradition that many Americans have forgotten.
Donna’s path is just as personal. While living in rural Colorado, Donna volunteered with Crestone End of Life, an organization that holds open-air cremations. When she returned to California in 2017, Donna wanted to continue her work helping families.
An end-of-life doula provides simple, practical advice and assistance to people facing their final days and their families. This encompasses three possible roles: (1) planning advice for the last days of life and the home funeral after; (2) being present when the person dies; and (3) being present to assist families with the home funeral.
A doula is a layperson who focuses on emotional and practical support, often better enabling doctors and nurses, for example, to do their jobs more effectively. Doulas do not say or do anything that is not legal for the family to do or say themselves.
Doulas empower families to care for their loved ones in the last stages of life and in the immediate aftermath of death. They offer families experience and peace of mind. Part of the post-death work involves helping families hold their own funeral in a private home. Home funerals are legal in all 50 states because they are safe and simple. The remains of a deceased person present no public-health risk in the hours and days following death. And a home funeral consists of simple, poignant acts like ceremonially bathing and dressing a deceased loved one, moving them to a place of honor in the home, decorating a burial container with drawings and messages, and hosting visitations and a service.
Families are increasingly opting for home funerals for a variety of reasons: to care for their loved one personally, to honor the deceased in the familiar comforts of a private home, or to observe religious customs, such as the Catholic wake or Jewish shemira.
Although safe and simple, most people have little experience with home funerals. That is where Akhila and Donna come in. They meet with the family and draft a step-by-step plan for the transition from life to death. This plan answers practical questions, the “how-tos” of planning for the death and conducting the home funeral. The written plan is tailored to each family and their home.
End-of-life doulas are not medical professionals. Doulas do not, for example, treat any illness, slow or hasten the dying process, prescribe or administer any medication, declare the moment of death, embalm remains, or engage in any activity that requires specialized technical knowledge.
End-of-life doulas are also not funeral directors. They do not arrange cremation or burial, or transport remains for either of those purposes. Doulas do not sell after-death services like embalming. Doulas do not accept money from families years in advance and then hold that money in trust to pay for a funeral in the future. Doulas do not operate funeral homes, which are places where funeral directors work and offer the full array of funeral goods and services.
And in contrast to funeral directors, doulas are not arm’s length service providers. Families usually embrace the doula as an emotional insider, someone who is admitted to the family’s inner circle in a way that a funeral director rarely is. Just as a birth doula is focused on the mother’s non-medical needs during birth (and the obstetrician is focused on the medical needs), the end-of-life doula is focused on the non-medical needs of the dying and the non-technical needs of the family after death (the funeral director focuses on embalming or interstate transport of remains).
It has long been so obvious that Akhila and Donna are not funeral directors that they have worked closely with funeral directors. Typically, families hire funeral directors to transport remains to the home and, after the home funeral, transport the remains for final disposition.
Full Circle’s end-of-life doulas are volunteers, but Full Circle charges a modest fee on a sliding scale for end-of-life planning advice. Full Circle also suggests a donation of $500-$2,000 for the presence of a doula at a home funeral, but that truly is a suggested donation, not a fee. No one will be turned away from Full Circle because they cannot pay.
The Family Plaintiffs
Akhila and Donna are not alone in this legal challenge. They are joined by Nevada County residents who want their advice and assistance during their own home funerals.
With Akhila’s assistance, Pamela Yazell held a home funeral for her beloved husband Bob two years ago after he died at home with cancer. Bob’s closest family and friends undressed him, gently washed his remains, and dressed him in his favorite golf attire. Pamela describes this ritual as a profound, life-changing experience for all present. “None of us would have known how to care for Bob after he passed away without Akhila’s help,” Pamela said. When Pamela, who is now 75, told her mother that Bob had passed away and would be honored with a home funeral, her mother remarked “that is how they use to do it in my day.”
Janaia Donaldson and Robin Malgren live on 120 acres of woodlands where they pioneered telecommuting in the 1980s before the advent of widespread internet (Robin is a PhD computer-science engineer and Janaia was a graphic designer). Now in their 70s, Robin has been diagnosed with mild dementia, which may be a precursor to Alzheimer’s. She would like to plan a home funeral while she is still of sound mind.
Kay Hogan is a 78-year-old private caregiver who discovered home funerals two years ago when Akhila helped with the passing of her longtime friend Robert. She too would like to learn more from Akhila about end-of-life options and holding a home-funeral.
Pamela, Kay, Janaia and Robin are intelligent, accomplished adults who want to speak with Akhila and Donna to plan their home funerals and one day invite them into their private homes to assist with their families’ home funerals. But California is determined to “protect” these senior citizens from Akhila and Donna until the end-of-life doulas obtain funeral-director licenses that they do not want and do not need.
The Bureau at the Center of the Bureaucratic Effort to Shut Akhila and Donna Down
On November 19, 2019, the California Cemetery and Funeral Bureau decided that Akhila and Donna—and their caring, invaluable advice and assistance—must be stopped. Following an investigation prompted by an anonymous complaint, the Bureau issued a formal notice that Full Circle was breaking the law: advertising and acting as a funeral establishment without a license from the Bureau.
The notice contained no evidence or any statement indicating what specifically Full Circle was doing wrong. Akhila and Donna were baffled, frightened by the accusation of lawbreaking, and upset that Full Circle’s end-of-life doulas would have to stop helping families. Akhila and Donna requested an informal conference with Bureau staff to straighten things out.
Akhila and Donna arrived at the informal conference to find Bureau staff sitting across from them in deliberate silence with their arms folded. The Bureau staff refused to let Akhila and Donna record the conference. Things became even more bizarre when Akhila and Donna asked the Bureau staff to explain what, exactly, Full Circle is doing wrong. The Bureau told them to hire a lawyer to explain it to them.
Eventually, it became clear that what the Bureau really wanted was for Full Circle to become a licensed funeral establishment and for the end-of-life doulas to become licensed funeral directors. But there is no practical possibility of that happening.
First, as noted, end-of-life doulas are not funeral directors, Akhila and Donna do not want to become funeral directors, and they certainly do not want to build a funeral home. Starting with the funeral home, Full Circle—a nonprofit with an annual budget of only $11,000 dollars—would have to build (or rent) a physical structure and outfit it with a room for storing or embalming bodies.
Next, funeral homes need funeral directors. Akhila, Donna, or one of the other end-of-life doulas at Full Circle would have to obtain funeral-director license to manage their non-existent funeral home. This would require passing an examination testing subjects irrelevant to home funerals, such as identifying signs of death and the laws governing embalming. Is it reasonable to expect Donna—who is 80 years old and has a nursing degree, a master’s degree in counseling, and a law degree from Berkeley—to acquire unnecessary training as a funeral director to help families with home funeral planning and assistance that is well within an ordinary layperson’s abilities?
All of this is bureaucracy and licensing for its own sake—not for protecting the public against any actual health or consumer-protection risk. There is not a shred of evidence that subjecting the home-funeral movement to the full panoply of funeral-industry regulation serves any purpose except the one that the Bureau staff acknowledged during the informal conference: “the funeral industry doesn’t appreciate competition.”
Akhila and Donna Join IJ to Fight Back
Akhila and Donna are determined to remain end-of-life doulas, ensure that others like them can pursue this calling, and protect the right of families to incorporate doulas into their end-of-life planning and home funerals. That is why they teamed up with the Institute for Justice to bring a constitutional challenge in federal court in Sacramento.
The First Amendment protects more than the right to express an opinion to the public. The Supreme Court has also recognized two important free-speech rights at stake here. First, the end-of-life doulas have the right to provide individualized home-funeral planning advice and the Family Plaintiffs like Pamela, Robin, and Janaia have a right to hear that advice. The Institute for Justice spearheaded the occupational-speech movement and has won cases in federal courts across the country, including most recently a case in Charleston, N.C. vindicating the rights of tour guides to talk about the city without a government-issued license, as well as a vocational school teacher’s right to teach students of all abilities—not just those who’ve passed a government-mandated test.
Second, people have a right to advertise lawful activities. If the Bureau cannot stop Akhila and Donna from helping families, then it cannot stop Full Circle from truthfully stating on its website that its end-of-life doulas are available to help families.
Just as the Bureau cannot stop Akhila and Donna from giving advice to families (or advertising that they do), it also cannot prevent them from being present in a private home to help families conduct their home funerals. The government needs a legitimate reason to interfere with the right to earn an honest living and with the sanctity of a funeral in a private home. Here, there is no such reason. If laypeople can conduct their own funerals, they can ask other laypeople to help. And it makes no sense to prevent a layperson from helping with a funeral occurring entirely in a private home until they build a physical establishment outside the home.
The only plausible reason for the Bureau’s action is pointless bureaucracy for its own sake and protecting funeral directors from competition. But bureaucracy is not a goal in itself. It is something we tolerate if it achieves a valid public purpose, which does not exist here. And the U.S. Court of Appeals for the Ninth Circuit, which covers California and other western states, has already ruled that private economic protectionism is not a legitimate government objective.
The Litigation Team
This case is being litigated by IJ Senior Attorney Jeff Rowes and IJ Constitutional Law Fellow Adam Griffin.