Susan MacNeil, left, and Kasey March.
Robert F. Smith/The Commons
Susan MacNeil, left, and Kasey March.

Shattering stigma about death and dying

Kasey March, an end-of-life doula, provides companionship, comfort, education, and guidance to people dealing with a terminal illness - theirs, a friend's, or a family member's

BELLOWS FALLS — In our culture, it is common for people to avoid talking about death - our own or that of someone we love. Sometimes people need help starting those conversations.

Kasey March is a death doula - a person who helps guide and console a dying person, and their family and friends, during the end-of-life period.

It is challenging, demanding, and unusual work, but it is nothing new.

Doula is a Greek word that goes back centuries. It historically means “a female helper or a female servant who provides service to someone in need.” In particular, it is a person who provides education, advice and support to a woman during pregnancy, the birthing process, and initial care for a newborn infant - a birth doula.

A death doula - also referred to as an end-of-life coach, death midwife, soul midwife or transition guide - performs the same types of services.

This is not a medical position, nor does a doula give medical advice. An end-of-life doula provides companionship, comfort, education, and guidance to people dealing with a terminal illness, whether it's their own, a friend's, or a family member's.

Though doula is a feminine reference, there are certainly some male doulas, said March, who is trained and certified by the International End of Life Doula Association. She noted that historically and culturally, the vast majority of those who have been helpers at birth, illness, and death have been women. Even today, she said, about 80% of doulas, and those who attend her End of Life Workshops, are women.

“A lot of people don't want to think about or talk about death,” March said. “There is a superstition among some that if we talk about someone dying, we'll make it happen.”

That stigma is what March and other death doulas are working to move beyond.

Through her work with individuals and families, and through a number of workshops around the area, March focuses on several different aspects of the dying process. She summed them up as end-of-life planning, creating a life summary, the end-of-life process, and helping survivors deal with life after the loss of a loved one.

Summing up what's important

March said that when people know they are in the final stage of their life, it can be a time of profound reflection and healing.

She talks with clients about what was important to them, what they feel their legacy will be, and what they would like to leave for others - materially and otherwise.

It can be as simple as helping a person put together a cookbook of favorite recipes to share with children and grandchildren. It can be the more complex process of trying to record and pass on the important events of your life and your life's work.

It can be making the decisions about who gets what in the dying person's estate.

Or it can be as profound as wanting to mend broken relationships, reconnect with old friends, or putting into words for your family what was important to you in your life.

“I try to identify what people are thinking about doing,” March said. “I can then help make that happen.”

Smoothing the way

The second phase where a doula can help is during the actual dying process.

“This is often the bedside vigil where someone is actively dying,” March said. “We try to make that sacred space as smooth a transition as possible.”

In what is normally a highly emotional time, March said it is the doula's job to be “the calm center. To find resources to help.”

Understanding and accepting death as a natural process is a vital part of how a doula educates those involved.

“You're there to be a calm person,” March said. “I've been in helping positions all my life. I've done crisis work at various levels. But this is not a crisis. Death is a natural, if also very emotional, process.”

Helping the dying and their friends and family through the process is rewarding, energizing, and difficult. Those surrounding the dying person often have “competing desires,” March explained.

“Everyone is in a charged emotional state and has different needs,” she said. “There are family dynamics, and the doula needs to understand that.”

The doula - an uninterested third party, as it were, yet one who is intimately familiar with the desires of the dying person and the death decisions they have made - can be a real gift to the family in helping carry out decisions under what are often overwhelmingly emotional circumstances.

Dealing with death and grief

Early grief, processing, and then reprocessing the loss of a loved one are necessary, difficult, and varied events.

“Talking about the person and the actual death, especially for the first several weeks after, is important,” March said. “There's some science there that doing this really helps to integrate what happened.”

It's not the same process for everyone.

“Grief is totally normal,” March said. “There is nothing wrong with you for grieving. We have these conversations. Some days are worse, some are better. Different people have different experiences of grief.”

She said that the doula can help deal with thoughts about the death and help anyone access community resources and get grief counseling.

March explained that a doula's “personal beliefs don't matter. I'm there to support them, to honor what is sacred and important to them. And my beliefs about what is done medically, such as medically assisted death, also don't matter.”

A doula's work with a family may be very limited in time, or they can also be “working with a person for months before they die, and then you are there with them when they pass,” March said. “It can be a real gift to the family.”

March said that communication is key to her work, and that it is “important that people not be afraid to think about death and have these conversations. Overall, it leads to a better death for people and a better situation for those left behind.”

Workshops and training

March has been holding End of Life workshops throughout New England, many of them with writer Susan MacNeil. MacNeil lost her mother in January 2022, and published a memoir about that experience, 18 Minutes: A Daughter's Primer on Life & Death, last year. A profile and an excerpt from MacNeil's memoir were published in the Jan. 4 issue of The Commons.

“When Kasey reached out to me after reading my interview in The Commons,” MacNeil said, “we were strangers who shared an interest about what it means to have a good death.”

MacNeil said she had not heard of a death doula before meeting March but was intrigued by the concept.

“An hour after meeting, we had a plan in place to share our Life, Death & Cake events with the public,” MacNeil said.

She found that listening to March answer questions from attendees at their presentations “has underscored the value of having a compassionate, impartial voice to offer guidance. Our partnership has deepened my own understanding of how to live well in order to die well.”

“Preparing for your death with knowledge and grace is the best gift you can give to your loved ones... and yourself,” she said.

March said she became interested in being a doula after working with a birth doula when her daughter was born. She trained in a doula program at the University of Vermont and spent a year working with practicing doulas.

“This end-of-life training is not easy. You need to practice what to do and say,” she said.

The death doula program has been growing since the early 2000s, March said, “though the idea is an ancient one.”

Doing work as a doula “starts with a conversation about whether this is right for you. It's not a good fit for everyone.”

Insurance usually does not cover the service, so doulas most often are privately paid, and the work ends up being a combination of paid, pro bono, and volunteer work. There are national and international doula organizations that provide training and certifications.

Uncomfortable conversations

The work of a death doula takes considerable skill in communication, and the ability to get people to talk about things that may be uncomfortable.

“Adult children often don't want to hear what their parents want,” March said. “Conversations have to happen with reluctant family members, and not just one conversation.”

That is part of the training of a death doula, which takes place in their hours of classroom work and throughout the year when they work with other doulas in actual practice.

“I have no vested interest in the outcome. I don't care who gets what,” March said. “It is a huge help for the family to be able to talk to someone without a vested interest and who will really listen. I can definitely do that.”

Those conversations also need to include important end-of-life medical decisions about how far to go in sustaining life, and how the dying person wants to personally deal with their death.

March said that saying goodbye to life and loved ones, and the actual medical process of dying, are two very different things.

“Trying to make those hard decisions when your life is emotionally charged is not a good idea,” March said. “That's part of the work of the doula. We get to make the space for dealing with death.”

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