A Day in the Life of a Death Doula

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BY CATHERINE DURKIN ROBINSON

When most people think of doulas, they think of non-medical professionals helping to facilitate the birth of babies. And they’d be right! But there are other kinds of doulas, too.

The term “death doulas,” mostly women caregivers for the dying, who have existed in some capacity since the beginning of time, isn’t as well known.

I started this work as a young person, without knowing the official term. In 2020, I opened up my own practice. Since then, I’ve been called a(n):

  • death doula
  • end-of-life doula
  • transition doula
  • death coach
  • death educator
  • death yenta

The title doesn’t matter nearly as much as the work. While birth doulas get people ready for the very real work that goes into labor and delivery, death doulas are similar. We get people ready for the very real work that goes into dying.

No Two Days, or Deaths, Are Alike

Clients, or their loved ones, reach out to doulas for many different reasons. Sometimes they’re dealing with a terminal diagnosis, a life-limiting illness, or perhaps reaching the end of a long life.

When they are told to “get their affairs in order” or otherwise recognize that death is near, they often don’t know what to do first. Many practical decisions must be made, but emotions can be overwhelming.

People feel lost and alone.

They don’t realize that an entire network of support is available to them. A way to die that’s peaceful, sometimes joyful, and helps grieving loved ones as well.

Death doulas also hear from people nowhere near the end of their lives. They want to plan for their deaths before a diagnosis. They need assistance with living wills, advance care directives, pre-planning funerals, writing life stories and other concerns.

We also support people in different kinds of transition. For example, when someone has lived independently for most of their life and is now moving into an assisted living facility, this is a death of sorts—certainly a death of their independent self.

It brings on complicated grief and other emotions. Those clients call us transition doulas.

Doula Training

Every end-of-life doula is different. We come from varied backgrounds. Let me tell you about my experience and the lens through which I view this work.

I was raised in a large Irish Catholic family and attended my grandpa’s Last Rites when I was five years old. It was my first, but not my last death ritual.

I remember it felt like my whole family and the entire town came to offer support. We prayed, told stories and allowed the dying person to feel our love, laughter and sorrow.

After the death, we would gather again for the wake, funeral and burial.

Many cultures conceive of death as a normal part of life. This always seemed healthy and natural to me. I was much older when I realized that many of my friends did not have this experience. They were mostly shielded from the death of older family members. If they said goodbye at all, it was often in a hospital room with wires and tubes everywhere.

This frightened them. So I became my friends’ death buddy of sorts. I went with them to bedsides, funerals and memorial services.

At 18 years of age, I left Catholicism but kept those Irish sensibilities. As an adult, I converted to Judaism and found more rituals and a similar comfort in communal traditions.

I’m also a student of both Zen and Tibetan Buddhism. This background informs my work and allows me to choose from a variety of rituals that help my clients make meaning of this sacred time.

Before doula work, I built a successful career as a progressive political advocate, teacher and newspaper columnist. When my sons went away to college, I volunteered at two hospice organizations. During the pandemic, I felt a calling to do more than volunteer.

I learned about the End-of-Life Doula Program at the University of Vermont. Since doula work is not regulated, 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.

After I graduated from the UVM program, I looked for a professional alliance promoting best practices. I joined NEDA (National End-of-Life Doula Alliance) and became a credentialed, proficient member.

What Does a Death Doula Do?

I approach this work from an advocate, educator and writer’s point of view. I want my clients to know their agency and feel empowered rather than dependent. Most death doulas do this in a variety of ways.

In general, our services typically include:

Companioning

Clients know we can’t promise them anything except that they’re not alone. No matter what happens, we walk them home without agenda or judgment. As a peer counselor, I provide support without a power differential, which can emotionally and spiritually comfort people at the end of their lives.

Educating

Most clients and their loved ones know very little, if anything, about the dying process. They feel so much anxiety as a result. Death doulas educate so their clients know what to expect and can better prepare themselves. This reduces anxiety.

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.

I also work with staff members at local hospitals and assisted living facilities. Doctors, nurses, care managers or senior living professionals didn’t get into this work to help people die. Quite the opposite. They want to help people live meaningful and healthy lives at any age.

Nonetheless, people will die in hospitals and senior living communities. I help the staff work through their own issues about death to better care for their patients.

Drafting Advance Care Directives

Families sometimes resist uncomfortable conversations. Discussing whether a loved one wants to be kept alive by artificial means and completing “do not resuscitate” orders fills them with dread.

As a parent, a former high school teacher, a hospice volunteer and now a doula – I have decades of experience moderating difficult conversations. Families with advance directives in place feel such gratitude that this “what if” has already been decided, written down and discussed.

Connecting

Doulas do not provide medical care or legal advice. But we know people who do.

Part of our job is networking and getting to know ethical and supportive professionals in our area. Without any attachment, financial or otherwise, we recommend and refer a wide variety of experts who can provide appropriate pre- and post-death services.

Coordinating

Volunteers who run errands as well as doctors, nurses, social workers, care managers, friends and loved ones all make up a care team. Each one is essential.

Most end-of-life clients don’t want to spend their precious time and energy keeping track of appointments or schedules. So, part of a doula’s job is sometimes acting as a project manager.

We easily coordinate visits to and from the care team so our clients can conserve energy and concentrate on enjoying loved ones.

Creating a Warm and Loving Space

Whether clients are in a hospital or at home, they are usually bedbound. Their space must be a haven, personal and peaceful. Doulas typically bring in books, rugs, candles, plants, pillows and anything else that might help make the room more comfortable.

We also provide a listening ear and support when visitors want to be helpful but don’t know what to say or do.

Legacy Projects

Many death doulas help clients create life stories, recipe books, ethical wills 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.

Assisting with Last Wishes

One of the first questions doulas ask a potential client is, “How do you want to live the rest of your life?” Some want to celebrate an early wedding, graduation, or holiday. We help make that happen.

Other clients want to reach out to estranged loved ones to reconnect, apologize or forgive. We help make that happen, too.

A Psychedelic Death Doula

Countless studies from revered institutions like Johns Hopkins, Stanford and NYU have looked at the ways that psychedelics and plant medicine reduce anxiety for terminal patients. People hear about these studies and want to know more.

You don’t need to be at the end of life to be curious. But a diagnosis makes people feel an urgency like it’s “now or never.” Doulas discuss ways to feel more peace about impermanence including therapy, meditation and breathwork.

If my clients are not inclined to pray or meditate or don’t have time for therapy, plant medicine may be an option. This depends on where the client lives and the laws in place. Psychedelics aren’t legal everywhere.

As a psychedelic death doula, I work with licensed therapists or facilitators. They’ll call me to sit with clients during their journey and help with the planning beforehand and integration afterward.

Trip sitting, or being with someone utilizing plant medicine or psychedelics, is a lot like being with someone at end-of-life. In either instance, I’m not a guide. I hold space and make sure they’re not alone.

How Much Does a Death Doula Cost?

Medicare and insurance don’t cover end-of-life doula work. Those struggling to make ends meet might think, “I can’t afford that.”

Yes, they can.

Similar to other death doulas, my prices depend on the services a potential client may need, the time they require and their ability to pay.

I operate on a sliding scale and won’t turn anyone away.

I’m also the recipient of an international doula grant, and many people donate to my organization. This allows me to serve everyone, remotely or in person, even those who cannot pay.

Doulas and Case Managers

In many communities, death doulas coordinate their efforts with case managers and other professionals to offer more services for the dying. Around the world, organizations are beginning to hire death doulas for just this reason.

Such hiring practices and partnerships bring death doula services to more people in need.

Since people are becoming more aware of different options for end-of-life care, death doulas and case managers also help each other in that respect. The more people hear about one kind of work, the more they understand the other.

I get a lot of referrals from case managers who have clients in need of services that hospice can’t provide.

Together, we put control back in the hands of someone who feels like they just lost control of everything. We help clients/patients explore how they want to live and die.

Emotions run high at the end of life. A caring team that includes different kinds of death workers helps dying people better assess their lives. We ensure that clients get consistent answers and superior care.

Good Lives, Good Deaths

If a person feels empowered to own their life, then hopefully they will feel empowered to own their death. What is a good death? The answers are different for everyone. A good death is whatever someone conceives it to be.

And death doulas like me are there to support them through it.

Catherine Durkin Robinson is a death doula and educator with Anitya Doula Services. She lives in Chicago.

 

 

 

Image credit: ISTOCK.COM/XESAI

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