What is an End-of-Life Doula?

What is an end-of-life doula or death doula? Are there any in Chicago? Most everyone has heard of birthing doulas, but end-of-life doulas are rather new. When someone receives a terminal diagnosis, they often don’t know what to do first. There are many practical decisions to be made but emotions can be overwhelming.

Too many people feel lost and alone. They don’t realize that there is an entire network of support available to them. A way to die peacefully surrounded by loved ones. And in a way that keeps their family supported as well.

Others want to plan for their end-of-life before a diagnosis happens. They just need assistance with advance care directives, obituaries, care coordination, and other details.

A properly trained death doula can help families at either stage.

My history and training

I come from a large Irish Catholic family and attended my first Last Rites when I was five years old. Viewing death as a part of life, the way my culture conceived of it, always seemed healthy and natural. I converted to Judaism as an adult and found a different set of rituals, but a similar comfort in 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, high school teacher, and newspaper columnist for both The Tampa Tribune and Creative Loafing. I also raised two boys who are now in college.

As a volunteer for Hospice, I recently felt a calling to do more than volunteer. To use my empathy, writing skills, and advocacy background to help serve people at end-of-life.

I learned about the End-of-Life Doula Program at the University of Vermont. Since there is no state 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 important to join a professional alliance promoting only the best practices.

I graduated from the UVM program and joined NEDA (National End-of-Life Doula Alliance.)

What is a death doula?

We service in a variety of ways. In Tampa at first and now in Chicago, I’m working with elder care attorneys, home health care agencies, and funeral homes. I serve those in our community dealing with a serious diagnosis or those who want to plan ahead for their end-of-life needs.

Some of what I do includes:

Writing obituaries.

Everyone has a story to tell, but not everyone can, or wants to, write it down. As a former columnist, with legacy training from UVM to make it easier for clients to talk about their lives, I’m honored to write obituaries for anyone who might need one. I write about the client’s accomplishments and adventures for public announcements, but also for future generations to enjoy. Shortened versions can be used for eulogies, memorials, and social media posts.

Drafting advance care directives.

Families sometimes resist tender or uncomfortable conversations. The idea of 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, hospice volunteer, and now 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.

Planning funerals or memorial services.

As a family services/pre-need counselor, I’m happy to help clients and loved ones plan a service that’s right for them. This includes music, prayers, and rituals from many different faiths.

Connect clients and families with a wide variety of pre and post-death services.

I 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.

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 for visitors who want to be helpful and say the right things. Comfortable surroundings help facilitate a 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 can easily coordinate visits so the client can concentrate on enjoying friends and loved ones instead.  

Work on legacy projects.

I help clients create recipe books, life stories either written or recorded and other legacy projects that can be handed down to future generations. These are cherished gifts for grieving loved ones in the weeks, months, and years ahead.

Companion.

My clients don’t want to die alone. At the same time, they want their families to be able to live their lives without feeling burdened or overwhelmed. I’m happy to sit with clients and just listen. Some talk to me about their adventures in the military or when they were working. Others like to share family stories. Still, others just want me there to silently hold their hands.

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. I help make that happen. I’ve also had clients who want to reach out to estranged loved ones to make amends or reconnect. I help make that happen, too.

“I can’t afford that.”

Yes, you can.

Prices depend on the services you need, the time you require, and your ability to pay – I operate on a sliding scale. No one is turned away.

Good deaths are similar to good lives. 

Many of us have the ability to own our own lives. We can also own our own deaths. Being true to who we are can mean a life free from regret and death that is joyful.

What is an end-of-life doula? Someone who’s proud to support those who want such an ending. Someone like me. If you need a death doula in Chicago, please click here to get in touch today.

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