This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health Endowment Fund.
The relatively new discipline of palliative care optimizes quality of life and reduces suffering for people with serious or complex illnesses. Usually provided by an interdisciplinary team of doctors, nurses, and other specialists, it provides an extra layer of support based on the patient’s needs rather than on their prognosis. Springing up across Michigan, palliative care programs support patients of all ages and in all stages of illness — and can coincide with traditional curative treatment.
“We’re trying to create a shift in attitudes in how we talk about death or becoming seriously ill," says Jim Gerhart, director of the
Central Michigan University (CMU) College of Medicine Department of Psychology's
Pain, Stress and Symptom Management Lab. "Part of what goes on is the cultural avoidance that all of us do. People who are sick, aging, and their families, caregivers, and loved ones avoid talking about it — even health care professionals. The idea that illness and dying are normal, and it’s okay to talk about it, puts clarity on things. By being role models [of palliative care], we bring this up, talk about it calmly and confidently, and show it’s okay.”
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Jim Gerhart.
While often confused with hospice care, palliative care can begin at the time of diagnosis — and even when hope for recovery remains. Hospice care is usually prescribed when a patient is believed to have six months or less to live, but Gerhart says palliative care has been proven to extend the time that patients live. For example, a
Tulane University study of patients with advanced cancer found that those receiving palliative care survived more than four and a half months longer on average than those who did not.
“Palliative care is not a technique. It is a framework for thinking about health care," Gerhart says. "We palliate stuff all the time. You don’t cure the flu, you palliate the symptoms by taking Tylenol to feel better."
Gerhart’s studies at the Pain, Stress and Symptom Management Lab have found that strong emotional reactions can prevent patients in pain from receiving effective care.
“The emotions often include sadness, depression, or anxiety,” Gerhart says. “The other big emotion in the room is anger. We've seen that patients with cancer tend to have more conflict when they are angry. Not a big surprise there, but they also report more pain and physical discomfort. Anger-prone folks are also more likely to feel that there is a misunderstanding with their physician about their prognosis.”
These findings inspired him to engage the CMU College of Medicine in an upcoming pilot of an online palliative care training program for doctors, nurses, psychologists, and social workers.
“Our data suggest a few things,” Gerhart says. “People may not even pursue palliative care. It seems that they may be afraid of sharing these emotions, and may be too focused on the here and now to think about how palliative care may help down the road. I think it’s very human to want to avoid a conversation if we think it will upset us, even if it can benefit us later.”
The program will create a community where health care professionals can learn and share how to relieve patients' and caregivers' stress; support them with counseling, advice, and encouragement; and connect them to other helpful end-of-life resources.
“It’s a chance to pepper these ideas out in community,” Gerhart says. “What we find is that although palliative care seems like a dark and difficult profession, it is so useful for knowing how to be helpful. We need to talk about it more. Palliative care is not just doom and gloom.”
“For a child with complex medical needs, care can feel fragile”
At the
University of Michigan C.S. Mott Children’s Hospital, the
Stepping Stones Pediatric Palliative Care Program connects seriously ill children’s parents and families with nurses, social workers, and spiritual care providers.
“When we first meet children and their families, we spend time to get to know their perspectives on what the current situation is, how the path has led to this, and what is most important [to them],” says team member and nurse practitioner Jennifer Wright. “Once we gather this information, we are thoughtful about what medical interventions are most aligned with those goals.”
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Jennifer Wright.
In addition to symptom management, the program facilitates difficult discussions or decisions, suggests coping skills, and introduces resources that help families celebrate life – for example, having pets visit hospitalized children, decorating a child's hospital room, or connecting families to programs like the
Make-A-Wish Foundation.
“Palliative care, by definition, is the ‘relief of suffering,’" Wright says. "As suffering can take many forms — physical, emotional, psychological, social — part of our work is identifying those things which are interfering most with living the life most hoped for despite difficult circumstances. Everything we do is with the aim of supporting families and children to reach goals that are possible.”
End-of-life doula Toula Saratsis volunteers as a consultant to the Stepping Stones team. She dove into the world of palliative care after her daughter Angelica was diagnosed with a rare and terminal genetic disorder when she was three days old. With no palliative care team available at that time, Saratsis researched the best ways to create the highest quality of life for Angelica, who lived to age 7. Saratsis’ experience of her daughter’s passing inspired her to work with others anticipating the death of a child.
“For a child with complex medical needs, care can feel fragile and difficult to coordinate. If a family does not have access to a palliative care team, it is overwhelming and all-consuming just to meet the needs of the child,” Saratsis says. “Palliative care considers the family as a holistic unit. It acknowledges and validates their needs.”
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Toula Saratsis.
In her doula role, Saratsis has helped a mother arrange a home vigil and funeral for her 10-month-old baby and supported parents anticipating a child who would die within minutes of birth.
“Working with adults or in elder care during an acute crisis illness, you roll up your sleeves, come in, and help. Pediatrics is different," Saratsis says. "There are a lot more complex dynamics going on when anticipating the passing of a sick child. What I find in the perinatal world is the isolation, the sense of a taboo to talk about things like, ‘My baby might die. What condition will the body be in?’ All those conversations sometimes don’t happen and families don’t know how to bring it up. When I companion [with parents], it’s about creating memories and them controlling their narratives.”
Death as a part of life
End-of-life doula Merilynne Rush has served as a member of many palliative care teams. She says her goal is to help patients focus on what is important to them and how they want to spend the remaining days of their lives, rather than blindly signing up for every test, drug, and procedure to extend a life full of pain and devoid of meaning.
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Merilynne Rush.
“Palliative care is whole-person care," Rush says. "It’s looking at every aspect, not just the patient’s physical health but looking at emotional aspects, spiritual aspects, and also cultural aspects. Palliative care is more well-rounded care, with longer appointments with more than one specialty — for example, the chaplain, social worker, and nurse practitioner as well as the doctor.”
As part of the palliative care team, end-of-life doulas perform a wide range of supportive tasks. They can connect patients to community resources like Meals on Wheels, medical transportation, or hospice services. They might help with cleaning, sorting, or simply giving family caregivers a break. They give patients an attentive friend who is comfortable listening to any story from their lives or how they are feeling about death.
“It is a universal need to talk about all the things they did, their legacy. When a doula comes in, there’s a fresh set of eyes and ears to honor this person for who they are,” Rush says. “People have studied
what people need at end of life — information, preparation, and choices — to be able to choose where to die, how to die, and who is going to be there.”
Rush also facilitates the
Ann Arbor Death Café, a monthly conversation for anyone who wants a more open, informative, and honest conversation about death and dying.
“Be aware that there is help out there,” Rush says. “You have to be willing to accept that you’re dying. That is a big hurdle. Talking about it and preparing for it won’t make death sooner, but it will make your life better.”
Gerhart concurs.
“There are positive consequences of getting comfortable with it. If you can talk about death, it’s a useful way to help you figure out what’s important about life. It clarifies what quality of life is,” he says. “We want medicine to make us healthy and live a long time, but we also want medicine to make us feel good and help us live the lives we want.”
A freelance writer and editor, Estelle Slootmaker is happiest writing about social justice, wellness, and the arts. She is development news editor for Rapid Growth Media and chairs The Tree Amigos, City of Wyoming Tree Commission. Her finest accomplishment is her five amazing adult children. You can contact Estelle at [email protected] or www.constellations.biz.
All photos by Doug Coombe except Jim Gerhart photo courtesy of Jim Gerhart.