The way Judi Johnson remembers it, the first time they met, Brenda Hartman was in bad shape.
Johnson, nursing director of the oncology program at North Memorial Medical Center, was leading a support group for people with cancer and their families. Hartman, then 32, came to the group with her husband. She’d been recently diagnosed with ovarian cancer.
“Brenda was at Stage IV,” Hartman said. “She was a very sick woman.” Hartman’s treatment regime (surgery plus heavy-duty chemotherapy) was harsh, Johnson recalls.
“They had to put her in the hospital every time she had a treatment. The chemotherapy was very difficult.” Hartman was too sick to complete the 12 rounds of treatment.
That was 30 years ago. Somehow, despite the odds stacked against her (a 95 percent chance that she would die within two years), Hartman survived, and with Johnson’s encouragement decided to devote her professional life to supporting other people through their cancer journeys.
Hartman already had a degree in social work and was working on two Ph.D.s when her cancer struck; after undergoing treatment and giving herself ample time to heal, she abandoned the doctorates and went back to counseling, establishing a practice as a psychotherapist and as a public speaker. Through her practice, Hartman counsels individuals, couples, families and groups. She also gives public talks and leads workshops on a wide range of related subjects, including living with cancer, the healing journey, living beyond the cancer experience and sexuality after cancer. She is also the author of two books, “Tell ‘em Charlie Sent Ya; Nine Stories of Healing and Death” and “The Golden Thread: Based on a True Story About Death, Grief and Healing.”
Johnson was a big supporter of this career move.
“That was Brenda’s skill to begin with,” she said. “She was a social worker by trade. She is very good at counseling. It was the right niche for her. With all of her experiences and knowledge, she has so much that she could give to the world.”
Hartman believes that Johnson’s encouragement helped her feel that she could rebuild her professional life after her cancer experience. As one cancer-free year followed another, she felt grateful and emboldened to take on bigger things. Johnson encouraged her every step of the way.
“Judy is an amazing force in my life, a key mentor,” Hartman said. “My life has been so much richer just for knowing her.”
A ‘legacy piece’
Last year, Johnson, encouraged Hartman to take one more bold step when she suggested that she apply for a Bush fellowship, a selective program run by the St. Paul-based Bush Foundation that annually awards up to 24 individuals a flexible grant of as much as $100,000 to strengthen their leadership skills.
Hartman had recently led a workshop on the importance of training medical professionals to talk with their patients about important end-of-life decisions; Johnson, herself a former Bush Fellow, felt that within the talk was the seed of a larger project, one that could be eligible for Bush Foundation support.
“Judi said I should apply for this fellowship,” Hartman recalled. “She said I was in a place with the knowledge that I have accumulated on end-of-life decision-making to start compiling it and handing it off to the larger world. It was her encouragement that inspired me to apply. I hadn’t ever thought about working on that level.”
What Hartman dreamed about doing was writing a curriculum for health care professionals that focused on culturally appropriate ways to help patients and their families through the dying process. Because so much of the American health care system is focused on extending life as long as possible no matter the cost, training programs for health care professionals tend to avoid the topic of death completely, Hartman said. She wanted to create specifically focused training programs that would help health care professionals rethink the way they looked at end-of-life discussions.
“I want to write curriculums for the health care professionals most likely to work with patients as they are dying,” Hartman said. “These are nurses, nurse practitioners, physicians, physician assistants and social workers with a health care or gerontology focus.”
Hartman wrote the fellowship proposal, and, to her surprise, she was named a 2017 Bush Fellow. She chose to work on her project over 24 months.
“This first year I am interviewing elders from different cultural, religious and spiritual traditions and learning what’s important to them at end-of-life,” Hartman said. “Next year my goal will be to talk to the different health care training programs and learn about what they are doing to address end-of-life issues with their students. The next step will be to produce a curriculum that will fit in with the individual training programs.”
The opportunity to focus on this issue and to develop a program that can help health care professionals learn how to communicate with patients about death and dying is a dream come true for Hartman, something that feels like a well-earned achievement after a long career.
“This is a legacy piece for me,” she said. “I finally can hand off to other professionals all of this knowledge I have gained through personal and professional experience, so it can be used to create a system that will help people die with dignity. This feels important and full of potential.”
Reframe the discussion
Over her decades of work with clients living with cancer, Hartman has seen too many situations where length of life is prioritized over quality of life. She hopes that her curriculum will help health care professionals and the people they serve understand that death does not have to be a defeat.
“Our priorities sometimes seem so confused,” Hartman said. “I’ve worked with clients who underwent cancer treatment on the day they died. That wasn’t helpful to them or to their loved ones.”
It’s too easy to say that Western health care professionals are shortsighted or blind to the needs of their patients, Hartman said. The truth is that many have told her that they’d like to make the end-of-life easier for their patients. They just don’t know how.
“In recent surveys, physicians were interviewed about what barriers they had to having end-of-life conversations,” Hartman said. “They said they didn’t feel prepared. They said they felt threatened by the discussion. They’re scared that they will cause more pain to the patient. Medical training makes people view death as a defeat.”
That attitude permeates our culture, Hartman said.
“We see it in obituaries all the time where people have written, ‘So-and-so lost their battle with cancer.’ Does that phrase mean that people who die are losers? That makes me crazy. These people didn’t lose. They completed their life. They did a beautiful thing. I want everyone to have a beautiful ending. I want as many people as possible to have time to say goodbye consciously.”
Well-trained health care professionals can help people say goodbye consciously when they understand that death is part of life, Hartman said, that it doesn’t have to be a failure when a patient dies, but rather a victory when their death is understood, accepted and sometimes even embraced.
“For me a good death is to be able to have time to talk to my loved ones before I die,” Hartman said. “In my practice, I have helped people as they are dying be able to consciously talk about their lives with their loved ones, to be able to say, ‘I love you. Forgive me. I forgive you,’ to be able to thank them for everything that they’ve received.”
Sometimes, health care workers just need to understand when it is best to step away, Hartman said. “I can tell you I would much rather spend the last three months of my life never seeing a health care professional and just saying goodbye. I’d rather have palliative care and hospice than chemotherapy and radiation.”
Johnson said she thinks of end-of-life discussions as the “elephant in the room” in many health care settings: “People, even doctors and nurses, can’t talk about it.
But everyone is going to die sometime. If we can make death a more positive experience, everyone will benefit.”
When it is completed, Hartman’s end-of-life curriculum for health care providers will be a great gift to the community, Johnson said. She sees opportunity and potential in her mentee’s project, something she’s certain the Bush Foundation saw when they read her application.
“Brenda’s experience is so uniquely different than anyone else’s,” Johnson said. “With this project, she is taking on something that other people can’t even imagine doing, and I know that with it she will touch the world in a tremendous way.”