What is an End-of-Life Doula?
End-of-life doulas, or death midwives, support people who are dying and their loved ones.
Most everyone has heard of birthing doulas, but the title “End-of-Life Doula” is fairly new. Even though we’ve been doing this work for centuries.
Birth doulas get people ready for the very real work that goes into labor and delivery, while death doulas get people ready for the very real work that goes into dying.
When someone receives a terminal diagnosis or otherwise recognizes that death is near, they often don’t know what to do first. Many practical decisions must be made, but emotions overwhelm.
Too many people feel lost and alone. They don’t realize that an entire network of support is available to them. There’s a way to die more peacefully while surrounded by loved ones. And in a way that keeps those loved ones supported as well.
Others might want to plan for their end of life before a diagnosis happens. They just need assistance with advance care directives, pre-planning, care coordination, and other details.
A properly trained death doula helps at either stage.
My History and Training
Every death doula is different. Let me tell you how I came to this work.
I hail from a large Irish Catholic family and attended my first Last Rites when I was five years old. Viewing death as a normal part of life, the way my culture conceived of it, always seemed healthy and natural. I converted to Judaism as an adult and found more rituals and a similar comfort in those communal traditions.
I grew up in Tampa and attended the University of South Florida. Using my political science and history degree, I built a successful career as a political advocate, educator (at both the high school and college level), and newspaper columnist for both The Tampa Tribune and Creative Loafing.
I also raised two boys.
During the pandemic, while volunteering for hospice, I felt a calling to do more than volunteer. I wanted to use my empathy, knowledge, and advocacy background to help serve people at the end of life.
I learned about the End-of-Life Doula Program at the University of Vermont. Since there is no state or federal regulation around doula work, I realized it was up to me to seek out the most rigorous education I could find. To provide my clients with someone fully trained to serve in whatever way they need.
I also knew it was essential to join a professional alliance promoting only the best practices.
I graduated from the UVM program and became a credentialed member of NEDA (National End-of-Life Doula Alliance.)
What is a Death Doula?
Death doulas serve in a variety of ways. In Chicago, I’m working with continuity care networks, elder care attorneys, psychedelic societies, home health care agencies, and funeral directors. Like most doulas, I serve those in our community dealing with a serious diagnosis or those who want to plan for their end-of-life needs.
Some of what we do includes:
Companion
I can’t promise my clients anything except that whatever they go through, they’re not alone. I’m happy to sit with them and just listen. As a peer counselor, I listen to their joys and regrets without judgment.
Educate
My clients and their care teams don’t know much about the dying process. They feel so much anxiety. I developed courses educating anyone about what to expect so they aren’t as scared and can better care for their loved ones.
We go over checklists for the dying, how to support people at the end of life, and how to effectively reduce physical, emotional, and spiritual suffering.
Drafting Advance Care Directives
Families sometimes resist tender talks or uncomfortable conversations. Discussing whether a loved one wants to be kept alive by artificial means fills them with dread.
As a parent, a former special needs teacher, a hospice volunteer, and now a doula, I have years of experience facilitating difficult conversations. When crises happen in families with advance directives in place, they feel overwhelming gratitude that this “what if” has already been decided by the client.
Connecting
Death doulas don’t provide medical care or legal advice. I’m not a grief counselor or music therapist. However, I have a network of ethical and supportive professionals to recommend. I connect clients and families with a wide variety of pre- and post-death services.
Create a Warm and Loving Space
Whether a client is at home or in the hospital, their space can be personal and peaceful. I am happy to bring books, candles, rugs, pillows, and anything else that might help make the room more comfortable.
I also provide guidance and support for visitors who want to be helpful and say the right things. Comfortable surroundings help facilitate a more peaceful death.
Coordinate Care, Visits, and Volunteers
Doctors, nurses, social workers, aides, friends, loved ones, and volunteers who run errands are all so very helpful. However, most clients don’t want to spend precious time and energy scheduling everyone. Doulas are also project managers and easily coordinate visits so the client can concentrate on enjoying friends and loved ones instead.
Legacy Projects
I help clients create recipe books, written or recorded life stories, and other legacy projects handed down to future generations. These are cherished gifts for grieving loved ones in the weeks, months, and years ahead.
Assist with Final Wishes
One of the first things I ask a client is, “How do you want to live the rest of your life?” Some want to celebrate an early birthday, graduation, or anniversary. Others may want to explore their sexuality.
I’ve also had clients who want to reach out to estranged loved ones to make amends or reconnect. Whatever the goal, I help make it happen.
Pricing Plans
Medicare and insurance don’t cover death doula work. That might trigger you to think, “I can’t afford that.”
Yes, you can.
I won’t speak for other doulas, but my prices depend on the services you need, the time you require, and your ability to pay – I operate on a sliding scale. I’m also the recipient of an international doula grant, and many people donate to my organization. This allows me to serve everyone, no matter their ability to pay.
Good deaths are similar to good lives.
If you feel empowered to own your life, then feel empowered to own your death. Being true to yourself means a life free from regret and death that is joyful.
What is an end-of-life doula? Someone proud to support those who want such an ending. Someone like me.
I learned the term death doula when my mom wanted to go through the MAID. I was doing research of Canada MAID and encountered this doula role. It is a great question on how we want to live rest of life when near the end. My mom had dementia for long time, but slowly progressing. When she was near the end, the meaningless and the dignity were two main thoughts in her head. I was the only caregiver, exhausted and wished I had someone like doula to help me. On the other hand, knowledge and compassion were what I built up through this last journey with her. I definitely would hire doula when I am near the end. Who does not want a peaceful mind when leaving this world? So the end of story of my mom, as soon as there was sign of the end, I held her hands everyday for the last 10 day. Peace was both what she and I wanted.