I recently attended the Deathcare Superconference and wanted to share some important information I learned with our Equal Deathcare Friends. The experts on the conference panels were law professors, death doulas, advocates, alternative disposition providers (an alternative disposition is when we choose something different for our remains than traditional burial or cremation), and others.
For this post, I will focus on death doula practice in the states, and why this matters to the LGBTQIA+ community.
Tanya Marsh, J.D., a law professor at Wake Forest University, is one of the foremost legal scholars on funeral and cemetery law in the U.S. She has published numerous papers in law journals and elsewhere outlining the rights of our dead bodies and how to navigate the deathcare landscape. Dr. Marsh asserts we need consistency in deathcare law among the states regarding 1) the definition of funeral service, 2) licensing for funeral providers, 3) how to prepare our documents stating our deathcare preferred preferences and body disposition, and 4) regulatory oversight of funeral business.
When I began conducting my research in equitable deathcare many years ago, I was astounded by how many LGBTQIA+ folks were either in mortuary school or employed in the death care industry (funeral directors, funeral home owners, death doulas, community deathcare, pastoral care, end-of-life and palliative care, and more). When I dug deeper into this phenomenon, I found that this work appealed to people in LGBTQIA+ communities because it provides an avenue to help others and provide care, work on a small team where privacy is more certain, and deathcare is lifecare. This last one resonated with me as a social worker. When someone dies, we care for their memory and body, but we also care for their families, friends, and loved ones. So many in the LGBTQIA+ community are natural care providers.
At the conference, I learned that death doula practice isn’t officially defined or recognized by the states and this has caused problems. Unlike other fields in end-of-life and death care, such as medicine, nursing, social work, and funeral service, death doulas operate from a model and code of ethics developed by their membership organizations, such as the National End of Life Doula Alliance (www.nedalliance.org).
Let’s pause for a moment and define what a death doula is and does in case you’re unaware. According to NEDA:
End-of-life doulas (EOLDs) provide non-medical, holistic support and comfort to people preparing for or experiencing end of life by offering education and guidance; emotional, social, and spiritual care; logistical and practical assistance, and more–before, during, and after death. End-of-life doulas complement and supplement the work of family and other caregivers (including hospice providers).
It is clear (to me) from this definition that death doulas are not, nor are they trying to be, funeral directors or funeral professionals. They provide support and counseling. They are knowledgeable in their state laws and can shepherd dying people and their families through the confusing decisions that need to be made, such as how to care for the psychological and emotional needs of someone at the end of life. They can also provide objective information about funeral care because they are not being paid by the funeral industry.
This is an important distinction. The funeral business is for-profit. They need to make sales for their bottom line. Funeral homes must balance the tension between providing family support at the time of death (at need) while trying to make money. Conversely, the primary focus of a death doula is to provide holistic comfort during the dying process. For beautiful storytelling about what a death doula does, I highly recommend the new book Briefly Perfectly Human by death doula and former attorney Alua Arthur. The title of her first chapter is A Friend at the End. This encapsulates the role of a death doula in five words.
Because of the lack of state recognition of death doulas, their services are most often not reimbursed by health plans or insurance companies in the same way hospice services are. Yet, their worth comes in many forms, especially for LGBTQIA+ communities. Death doulas are trained to provide care with a lens of diversity, equity, and inclusion. The NEDA website makes this explicit:
We pledge ourselves to developing and maintaining an environment that recognizes, understands, and appreciates the impact of differences such as race, ethnicity, gender, class, education, age, sexual/affectional orientation, physical ability, language, political affiliation, economic status, immigrant/citizenship status, military experience, and legal position.
Imagine having someone accept you, care for you, believe in you, listen, join, be present, and comfort you as your life is in its final act. Your life story is important, who you love is critical to the care you’re provided, your chosen family is included, and your gender identity is celebrated. All of these things and more are offered with a death doula.
BUT.
Without consistency in state laws regarding the definition of funeral practice, many death doulas get caught in the web of these unclear and inadequate rules.
One such example I learned about at the conference was presented by Ben Field from the Institute for Justice. He is representing two death doulas (in two different states) who have had cases brought against them for conducting funeral practice without appropriate licensing.
I’m no legal scholar, but the differences between death doula and funeral provider services are clear.
I’m going to ruminate a bit about why these cases were brought. In the first case, which has been decided in favor of the death doula, the case was brought by the state funeral board. Why, you ask, would a state funeral board try to decommission a death doula? I have some thoughts.
First, as I mentioned before, death doulas are not beholden to funeral homes. They can educate people about what the state laws are and what they mean, such as you do not have to be embalmed, you can have a home funeral, and there are alternate memorial and body disposition options if you wish to consider them.
We can see here that this might take some business away from funeral homes. Only nine states in the U.S. require that a person use a funeral director to oversee death care logistics. The laws are complicated, and it’s in this confusion that many funeral directors can steer consumers toward options that might not align with their preferences, especially at the end of life when we are most vulnerable.
At the conference, Dr. Marsh shared the preliminary results of a research study she and colleagues conducted about body disposition preferences. This study has not yet been published, so I cannot share specifics other than to say respondents did not overwhelmingly prefer casket burial or embalming. People are beginning to notice that there are disposition choices out there, and when we have death doulas, death educators, and community death care providers offering us more information about these options, it could present a direct threat to the funeral industry who may not offer them.
Also, death doulas may be keenly aware of predatory funeral homes and may guide their clients away from them.
The Federal Trade Commission, the regulatory body that monitors the funeral industry, has caught several, mostly from consumer reports or complaints. Some of these have also been identified through FTC secret shoppers, but with over 18,000 funeral homes in the U.S., it’s a daunting task. Therefore, consumers need someone on their side to aid them in finding a funeral home that operates fairly. For LGBTQIA+ consumers, death care isn’t just about fairness in pricing, it’s also about inclusivity and non-discrimination. Because death doulas have DE&I in their creed, they may also be able to navigate someone to a provider who will honor their identity.
Ben Field from the Institute of Justice told conference-goers that the first case against the death doula was settled in her favor. Under First Amendment freedom of speech, we find a safe haven for death doula work. Much of what death doulas do in their roles as supporters and educators is to talk and listen. This is speech. And it is protected.
The second case, in my home state of Indiana, has yet to be decided. Indiana has some of the most restrictive and arduous funeral laws. You can read more about the case here.
These court cases will showcase that there is a place for death doula work among our death care providers. I hate that these two people have had to endure this while simply trying to provide good care to folks at the end of life, but at the same time, winning these cases will signal to the country that change, it is a comin’ in death care.
What’s interesting to me is that our capitalist society is built on consumer choice. Anti-trust law ensures competition and reduces monopoly. Although many funeral homes are individually owned and operated, the funeral industry has carved out a strong lobby and as we know, there is power in numbers. Winning these court cases is standing up to the bullying of a funeral empire that tries to monopolize death care.
I promise you I’m not trying to cast a dark light on the funeral industry, I’m trying to highlight the wrongs of those who are wrong. Death doulas are an important element of death care, a critical piece of the death care puzzle. There is plenty of work to go around since we all will die. Death doulas do not replace family, friends, or hospice. They complement these other roles, they journey with the dying person, and especially for those who have no one else, they build companionship based on trust and compassionate care.
For those in LGBTQIA+ communities who might be weary of funeral homes due to their inherent traditional values, a death doula may be just what you’re looking for at the end of life. However, you DO NOT have to be at the end of life to meet with or talk to a death doula about your perceived needs at the end.
For death doulas, inclusive funeral providers, and other LGBTQIA+ affirming death care resources in your area, please see our resources page.
