FIVE THINGS TO KNOW ABOUT DEATH DOULAS

Death Doulas may seem like a new or progressive idea, but they are as old as death itself. In many cultures throughout history, mental, spiritual, physical and emotional support have been a fundamental part of the transition to death. Today, such support is rare, especially in Western cultural settings which tend to avoid discussions about death. A survey by The Conversation Project concluded that 90% of people say that talking with loved ones about end of life is important, yet only 27% have actually done so.
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In April, Ashley Johnson led a Crucial Conversation about death doulas as part of The Art and Science of Cremation: Crucial Conversation Series in April 2021. Because the topic is so intriguing, we wanted to follow up and share her experience and insight in the blog.

FIRST, TELL US ABOUT YOURSELF.

My death care career was inspired by growing up in a low socio-economic neighborhood that lacked advocacy on how to deal with end-of-life practices. When death happened, families were not mentally, emotionally, and financially prepared. As a result, they were not healing from this trauma.

My interest in funeral service started as a child, I would read the Sunday obituaries instead of the comics. I was motivated to become an end-of-life doula when my childhood friend was diagnosed with stage 4 colon cancer at the age of 27. I was doing the task of an end-of-life doula for her without knowing it. Once she transitioned, I saw fit to provide others in need of education, service, and companionship and continue this journey. Everyone deserves “good death” and families need proper closure.

After more than a decade in the death care industry, I launched Loyal Hands, an End-of-Life consulting agency I founded to provide death doula services in Orlando, Florida. I joined CANA in 2018 and began working with the Membership Advisory Group to build my network of deathcare professionals.

​1. WHAT IS THE VALUE OF A DEATH DOULA?

End of Life Doulas, or EOLDs also called Death Doulas or Death Midwives, enrich the dying experience for patients, family members and friends, while strengthening the relationship between medical (the doctors, nurses, social workers) and non-medical support (the family or caretakers). We are trained professionals who provide assistance and guidance with holistic services to individuals and their families during transformative life changes.

Doula-client relationships engage the difficult and complex emotions while navigating the signs and symptoms of the dying process. An end of life care team is made up of multiple different professionals ranging from doctors, nurses, social workers, and End of Life Doulas to foster a culture of equity in order to facilitate a good death. We strive to be a support system for those who are terminally ill, elderly, or healthy and their families as they plan for their transition. A death doula's work ranges from logistical planning for the time before, during and after of death; conducting rituals or comforting practices; helping the dying person reflect on their life and values; and explaining the bodily functions of dying to caregivers.

Doulas are an active part of the Death Positive movement, a social and philosophical movement that encourages people to speak openly about death, dying, and everything in between. Death Positive seeks to eliminate the silence around death-related topics, decrease anxiety surrounding death, and dismantle the foundation of inequality, racism, and social marginalization at end of life.

​2. WHAT TRAINING/LICENSURE/CERTIFICATION DOES A DEATH DOULA NEED?

Although there is no federally mandated certification to become an end-of-life doula, there are many private organizations that offer education or certification programs. It is strongly recommended to take end of life training classes, obtain volunteer experience at a hospice, and become National End of Life Alliance (NEDA)-proficient following training and an exam on the Core Competencies:

1. Communications and Interpersonal Skills
2. Professionalism
3. Technical Knowledge
4. Values and Ethics

NEDA is a great organization because it helps inspire positive, creative end of life practices for the dying, their loved ones, and the agencies involved which includes funeral homes, hospice and palliative care.

Consumers and deathcare-related businesses can find an end-of-life doula at the National End of Life Alliance website. Because the industry is currently unregulated, it is recommended that people interview an end of life doula before hiring them, just as they likely would a birth doula.

3. HOW ARE DEATH DOULAS DIFFERENT FROM FUNERAL DIRECTORS OR HOSPICE WORKERS?

Death doulas are NOT competitors with funeral service but rather complement the death care industry by providing additional support and community resources for deceased and their families. There are laws governing what death doulas can and cannot do just as with traditional death care. Funeral directors interact with families post death while end of life doulas are present with families before, during, and after death occurs.

In my own work with funeral homes, I have provided respite care to the families immediately after the death and provide periodic follow ups and aftercare. It’s the customer service that keeps families coming back. As we all know, people will not remember what you said but they will remember how you made them feel.

The difference between hospice and death doulas is that death doulas do not provide medical care. Instead, death doulas work in conjunction with hospice programs to provide interpersonal, social, logistical, and spiritual guidance that complements the care they receive in hospice.

Hospice care is regulated by Medicare rules, limiting the time staff is allowed to spend with patients and families. The National Hospice and Palliative Care Organization (NHPCO) has just put together an End-of-Life Doula Council to share with hospices and families the ways in which Professional End of Life Doulas can assist their work. NHPCO is encouraging hospices to hire doulas to complete the hospice team by filling in “the gaps in care” and allowing for the best end of life experience.
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Death doulas also step into other areas where hospice and funeral homes may need help, such as:

• Advance Health Care Planning
• Practical Training for Family Caregivers
• Creating a Plan for Support at the Patient’s Time of Death
• Help with Planning Funeral and Memorial Services
• Companionship to Patients
• Needed Relief for Family Caregivers
• Grief Support
• Vigil presence for Actively Dying Patients

4. who hires death doulas? 

Death Doulas are here to serve humanity. We serve anyone ranging from young, elderly, terminally ill, healthy, caretakers and even pets. End of life doulas complement the care from hospitals, hospices, and funeral homes by filling in the gaps that occur during the dying process.

Every doula is different. Some assist only the healthy, some assist only the dying. This is why it is best to interview doula to see what their specialty is. Doulas may also be celebrants, hospice staff, or even massage therapists. Keep in mind each doula has their own specialty. Some may prefer to work only with advance directives while others may prefer legacy projects, but all are dedicated to supporting their client and community in this transition.

5. HOW CAN DEATH DOULAS BENEFIT MY DEATH CARE BUSINESS? HOW CAN I CONNECT WITH MY LOCAL DEATH DOULAS?

End of Life Doulas are not simply a trend or a fad. Roughly 10,000 people turn 65 each day in the US, so more and more elders—as well as those with life-limiting illness—will need our services. Families are bringing new values, preferences, and opinions that are changing the world of funeral service. They are thinking differently about how they want to honor their loved ones and have new perceptions of the funeral service profession.

Death care is changing rapidly, with ongoing expansion of the industry. There is a demand for change in the way we care for the deceased, both physically and emotionally. Death doulas help bridge the gap between families and death care businesses. Having a death doula is helpful when a family has little experience with death or when they are afraid of confronting death. The death doula can act as a liaison between the family and the funeral home, helping to educate families about the options available to them and easing what can often be a difficult or painful arrangement process.

We offer a variety of services that include helping a person write their own obituary; assisting with legal paperwork, including advance directives, health care proxies, and wills; creating a peaceful, loving atmosphere at death; and, most importantly, providing grief care before, during, and after death of a loved one. Death doulas can help families reduce confusion and mistrust when interacting with death care professionals. Doulas also educate people to know that they have choices. Funeral professionals, including doulas, want loved ones to be able to honor those who have died as much as they were honored in life. We all encourage creating a ceremony and a final resting place that reflects who the deceased was and what they cared for. We ultimately want to bring families and communities into the death space and normalize it.

There are so many benefits that death doulas can provide death care business. We can help obtain earlier referrals and connect the dying to a funeral business. Doula services increase satisfaction which leads to more referrals and reduced intake stress. Connecting with local death doulas can be as simple as a google search because most end-of-life doulas offer a free consultation to help people find the right match. You can also browse through the National End Of Life Doulas Alliance (NEDA) directory to find an End of Life Doula in your area. 

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Ashley Johnson holds an anthropology degree from the University of Florida, and completed her EOLD training at A Sacred Passing. She is a licensed Direct Disposer. Ashley has earned a NEDA proficiency badge, belongs to the Cremation Association of North America (CANA), the National Funeral Home Alliance (NHFA), and the International Cemetery, Cremation and Funeral Association (ICCFA). Additionally, she holds certifications in Emotional CPR, and counseling grief clients. She has more than a decade in the death care industry. Very involved in her community, she volunteers at several local hospices and non-profits, and serves as the “Get Your Rear in Gear” 5k run/walk event director for the Colon Cancer Coalition.