Deborah Lee talks about the joys, challenges, and rewards of her 30-year career in Hospice: A Memoir of Life Among the Dying

By Stephen Leon

The song playing in Deborah Lee’s head wasn’t just a temporary annoyance, like a tune that gets lodged in your brain after you hear it over the supermarket sound system.

It was a sign that she had found her calling.

The story of “Graciela Hernandez” is such an important milestone in Lee’s 30-year career as a hospice worker that she decided to tell it in the first chapter of her 2020 book Hospice: A Memoir of Life Among the Dying.

The chapter, titled “There’s a Lot They Don’t Teach You in Graduate School,” recounts how Lee, then a relative newcomer to social work, had been assigned to the Hernandez family because they were not feeling a positive connection with the nurse who had been visiting from Lee’s hospice team. Graciela, 15, was dying of cancer; as Lee prepared to ring the doorbell of the Hernandez family on a February day in 1991, she worried that she, too, would fail to connect.

For one thing, she was afraid there might be a cultural barrier with Graciela’s parents, who were Mexican-American. And while the parents were losing their only daughter just as Graciela was coming of age, Lee was eight months pregnant, visibly ready to experience the joy of bringing a new child into the world.

Mr. and Mrs. Hernandez were polite but cool; the girl lay comatose on her bed. Lee stayed by Mrs. Hernandez’s side while she administered a feeding tube, and as Lee sensed a slight warming from the woman, she found herself quietly shifting from an intellectual approach to a more intuitive one. Back at the kitchen table, Lee began to notice a song that was running through her head.

“I was relatively new to hospice, and relatively new to social work,” Lee recalled in a recent interview. “I was not accustomed to trusting my gut in my work. I was still pretty concerned with doing things ‘right’ [here Lee, sitting across from me, raises her fingers in quotation marks]—So when I first started hearing that song in my mind, it was more a distraction than anything else. I didn’t initially perceive it as having any clinical relevance.”

But the song would not go away, and Lee couldn’t ignore it any longer.

“I started to feel like I was supposed to say something about this to the family. And that feeling just kept getting stronger … to the point that it almost felt like screaming in my mind: Say it! Say it! So I did.”

“Never in a million years could I have anticipated what that unleashed.”

Lee told Graciela’s parents about the song in her head—“You Are My Sunshine”—and added that she must sound crazy, but felt for some reason that she needed to share it. As Lee waited for a reaction, first Mrs. Hernandez, then Mr. Hernandez, burst into tears. The song, they explained, was their daughter’s favorite as a young girl. Then Lee burst into tears as well.

Suddenly, the family’s experience with the previous nurse made sense; “the Hernandezes,” Lee wrote in Hospice, “felt that she did not truly understand what they were going through. They needed someone to see past their controlled, critical presentation to the agony within. When I ‘heard’ their daughter’s song—despite the disease, despite the passage of many years—they knew I could hear them.”

“As my hospice work continued,” Lee says, “I came to recognize this experience as what I call a ‘God moment.’ Hospice is full of God moments if you listen for them.”

***

Deborah Lee was born in Chicago and raised there until she was 14, when she moved with her mother and stepfather to the Milwaukee area. Her parents had divorced when she was 2, and her father also remarried. Her complicated family life as a youth fed her restlessness as a young woman; in her college years, Lee “wandered around a bit” and attended three of them, “but the piece of paper says Northwestern.”

Next, she fulfilled a dream to move to California, where she lived from 1978 to 1983. “And that was a very significant awakening to the real world,” Lee says. “My California fantasy was that that was where all the hippies lived. And I was going to go out there and be a hippie.”

However, she says, “absolutely nothing that happened in California worked out the way I hoped it would. The whole hippie ship had sailed by that time. In retrospect, it was a good experience. Let’s just say I got a lot out of my system. At the end of five years, I slunk back to Chicago with my tail between my legs.”

Lee returned to her hometown “feeling like I needed to get serious about what I was going to do when I grew up.” She worked for two years as a legal secretary for a divorce attorney in downtown Chicago; she liked her boss and enjoyed the job. But the wheels in her head were turning.

“I had two insights during the two years I worked for him,” she says. “The first was that the most enjoyable part of the job for me was listening to his clients pour out their hearts about what they had been through. I encouraged them to get this off their chests with me, because unlike my boss, I wasn’t charging by the hour.”

“The second thing I realized is that I was not going to want to be doing that same job when I was 50.” At that point Lee decided it was time to go to graduate school “and have a career and not just a job.” She applied to Loyola University in Chicago, where she earned a master’s in social work.

The idea of social work had been bubbling under the surface for some time. As a teen, Lee had enjoyed hanging out at a drop-in center staffed by students doing graduate study in social work. Also, “my stepmother was a social worker. And I admired her tremendously. So you put all that together with the fact that I enjoyed listening to my [lawyer] boss’ clients and trying to help and support them.”

There was one more piece to the puzzle, and her therapist helped her figure it out.

“I essentially grew up with four parents,” Lee explains. “They were all good people, but they were not perfect. I was certainly not abused or deprived in any way, but I wasn’t particularly happy.”

After her return from California, she went into therapy for about a year. “Toward the end of that time, I told my therapist that I was planning to go to social work graduate school. He asked me, ‘What is it in yourself that you’re trying to fix?’”

“I came to the realization that I was still trying to sort out the many mixed and conflicting messages I had gotten while growing up. And that was basically it; he gave me the insight that there was something I was trying to figure out by going to graduate school.”

***

About a decade into her hospice career, Lee got to thinking that she was having experiences, through her patients, that the average person didn’t have. “And I started writing about them,” she says, “just to process my own thoughts and feelings about them.”

Twenty years later, at the end of her 30-year career in hospice, Lee had about 20 pages’ worth of stories. “When something happened that I felt was worthy of writing down, I wrote it down. But I still was not thinking ‘Oh, I’m going to write a book.’”

After the pandemic hit, and it became apparent that it was going to go on for a while, the now-retired Lee was looking for something constructive to do with her time. And she started thinking seriously about turning those 20 pages of stories into a memoir. But she was unsure which direction to take; some of the stories (like Graciela’s) were interesting case studies, while others were more like educational essays. She could take a pragmatic approach and write an educational book for hospices to buy in quantity and give to families, or she could write more of a memoir.

At that point, Lee enlisted the services of a freelance editor, Elizabeth Judd, for what was called a developmental assessment. “She had done a lot of editing on books related to health care and to spirituality; she was the perfect person to guide me,” Lee says.

“She was a tremendous encouragement to me. She told me that she really enjoyed the excerpts that I sent her, and that it was one of the more gratifying things she had edited recently because she actually felt I was a good writer.”

And Judd nudged her toward memoir: “Write more stories. Write more stories.”

Hospice is a testament to the complex, poignant, rewarding, and often spiritual nature of hospice work. It also is eye-opening for anyone who might wonder why people like Lee do such “depressing” work.

“First of all, it’s not depressing. We, the hospice team, walk in and find some miserably sick person lying in a bed, and there’s lot we can do to make them better. When the family looks at their dying loved one, they see what I call ‘ghosts.’ They see not just the person in front of them at that moment, but all the people that he or she used to be. We, the hospice team, don’t know all those people. … We only know the person who is there now. That gives us a different perspective than what the family has, and a greater degree of objectivity.”

“For me, and probably the majority of hospice workers, there is a strong spiritual component to our work. Hospices themselves are not religious organizations. … But the majority of hospice workers that I have known bring some sort of spiritual perspective with them. They may or may not be religious, but the majority of them are highly spiritual. For me personally, I have a very strong sense that hospice work was my ministry.”

While some theories of human development end with physiological maturity, the psychologist Erik Erikson postulated eight stages of development through life, the last being “ego integrity vs. despair,” in which people attempt to reconcile their life successes and failures. Lee says she used the Eriksonian eighth stage a lot in her work with hospice patients.

“All of us want to think that our lives have some kind of meaning,” Lee says. “And as the hospice patient tells me about himself, I can help them see what some of that meaning might be and I can validate that for them.”

“Sometimes they have regrets. I try to help each person sort out those things that they felt good about, and help them come to a place where they can feel that their life overall had a positive effect. Some people, sadly, are truly in despair. There were those few that truly felt they had wasted their lives and messed up their opportunities. And that’s not something you can fix on somebody’s deathbed. What I could give them was the opportunity to be heard and accepted by me, without judgment.”

And then there are the crazy spiritual moments that sometimes accompany the last hours of a person’s life—or maybe even the hours just afterward. These are Lee’s “God moments”: improbable situations that invite us to consider mystical explanations over rational ones. A group of robins gathering in a tree outside a hospital window in the middle of a snowstorm. A red balloon that hovers around an apartment entryway on a windy day, never blowing away, as if waiting for someone inside. An experienced Air Force pilot who dies a few hours before a living pilot engineers a miracle Hudson River landing of his distressed plane, carrying all passengers to safety.

While the paranormal explanations for these stories (especially the one involving “Sully” Sullenberger) can seem farfetched, still, one has to wonder: On that winter day back in 1991, by what passageway did “You Are My Sunshine” enter Deborah Lee’s brain?

The day she “met” Graciela, Lee began to better understand hospice work as her calling, and hospice patients and their families as people whose lives and connections with loved ones can be improved under the empathetic care of hospice workers.

“I learned a tremendous amount, over the course of 30 years, about how different people face their own mortality,” Lee concludes. “And that has been helpful to me in thinking about my own eventual death. I hope that when my own time comes that I can bear up as gracefully as some of the people that I met.”

Hospice: A Memoir of Life Among the Dying, by Deborah Lee, was published in 2020 by BookLocker (BookLocker.com) of Saint Petersburg, Florida.

Deborah Lee is a colleague and associate of Patricia Fennell of Albany Health Management Associates, Inc., on whose website this story also appears.