How death doulas help people and families with the dying process

UNION COUNTY, N.J. - There are times in one's life as a parent that you think about from the moment your babies are born. Sometimes those moments unfold exactly as you expect.

For Lisa Stockman Mauriello of Summit, New Jersey, forming those core memories had to be condensed into a few short months — the time between her ALS diagnosis and the day she passed.

"We had a situation where all of our three sons were graduating," Bob Mauriello said. "That was kind of her goal — to make it to those graduations."

Lisa was the poster woman of the working mom. She was a healthcare public relations veteran, a mom of three sons, a wife of 25 years, a lover of life, a sister, a daughter, an advocate for ALS patients, and so much more.

All these things were taken in the blink of an eye when she was diagnosed with bulbar amyotrophic lateral sclerosis, a rare and aggressive form of ALS. What began as an inability to yell for her dogs spiraled into total paralysis.

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"We got to the point where really the only thing that she could move was slightly moving her right foot and her eyes. So we had this thing where I would hold up this card, and then she would look at me and I would just kind of go across if she wants to say something," Bob said. "So I would go across and if it started with 'C,' she would blink, and then I would say, 'OK, the first letter C,' and then I would go across."

This is the cruelty of an illness that steals your body but leaves your mind — questions are left unanswered and conversations remain unspoken. There is also a growing fear that time is running out. It's why Lisa wanted an end-of-life doula — someone to unburden her family while helping to get her affairs in order. Just as a birth doula helps to bring a new life into the world, a death doula, or end-of-life doula, helps a person peacefully transition out.

"Everyone says, ‘It must be so depressing — how can you do this work? You're talking to people who are dying all the time, you're dealing with death, you're seeing death,'" end-of-life doula Janie Rakow said. "But it's the opposite because you really feel like you are helping the person and their loved ones through this process and educating about it."

Rakow co-founded INELDA, the International End-of-Life Doula Association.

Rakow helped Lisa as she absorbed the weight of her terminal diagnosis and organized her life in preparation for her death.

"What a gift to give your loved ones when they know your wishes," Rakow said. "And they don't have to guess when you can no longer express that."

A lot can go into the process of dying of a terminal diagnosis. Where you will pass away? Who will be there with you? Will it be with the assistance of medication, which is legal in New Jersey, or only with the help of comfort medication? The intention of a death doula is to be an advocate for the patient, especially when their illness denies them the ability to do it for themselves. 

In addition to arranging hospice for Lisa and helping with the mounds of paperwork, Rakow helped prepare something tangible for Lisa's children and husband. Together, Lisa and Rakow worked to fill out 40 to 50 cards each accompanied by a handwritten memory. When ALS robbed Lisa of the ability to do it on her own, she dictated her messages to Rakow.

It was but one part of Lisa's robust legacy aided by the guiding hand of her end-of-life doula.

"We're all heading towards dying at some point in our life so why can't we have open, honest conversations just about that? Rakow said. "The more we normalize it, the more it's not such a frightening and scary thing."

To the very end, Lisa advocated for ALS research and tried to get promising experimental drugs into the hands of patients who need them most. Lisa started an undergraduate journalism certificate at UNC Chapel Hill, her alma mater, and she put down on paper the love in her heart and the joy she experienced in all the small moments that amount to a life well lived.

Lisa Stockman Mauriello died on Aug. 4, 2021. She was 52.

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To learn more about Lisa Stockman Mauriello's legacy through UNC's Health Communication Certificate program, visit Hussman.UNC.edu.

To either hire an end-of-life doula or train to become a doula, visit INDELA.org.