Doctors are taught to fight death—but it’s a losing battle. Some are looking beyond biomedicine to help them better communicate with patients about the end of life.
In January 2015, a man walked into Midway Studios on 60th Street carrying a satchel. In it was a bronze cast of his mother’s head: a death mask.
He was on his way to a public workshop on death and the kinds of artifacts we keep to remember our dead—belongings of the deceased, art made from their hair, albums filled with photos. The workshop was one of four organized as part of the Living Mortal Project, led by Jesse Soodalter, AM’15, a fellow in hospice and palliative medicine at the University of Chicago Medicine. Supported by a grant from the University’s Neubauer Collegium for Culture and Society, the project aimed to understand and influence the ways we think about mortality.
That day’s symposium, “The Imaginary Funeral: Image, Artifact, and the Work of Mourning,” packed the room. In advertisements for the event, attendees were invited to bring objects by which they remembered their own dead, and many did. Most of the items they brought had belonged to their loved ones—clothing, books, several watches.
The death mask stood out. The man set it on a chair and recounted how, when his mother died in Germany in 1967, a sculptor friend hurried to the hospital to make the mask. Once a popular way of remembering the dead, the form is itself a dying art.
Other Living Mortal workshops explored the euphemistic language we use to discuss death; the conscious and unconscious ways that we are drawn to death; and what we feel we owe to our dead. There’s usually “a cultural taboo” around talking about death, Soodalter notes. But the workshops were a breakthrough, says palliative care physician Monica Malec, who works with Soodalter on the project. Everyone present had full permission to talk about what they know and what they think. And they used it.
“We’re in a moment where people are open to the conversation,” Malec says. “There’s a little more realization that if we don’t find a way to talk about this, things can go very wrong.”
It’s a well-cited statistic that, even though the majority of Americans say that they want to die at home, only 25 percent actually do. The rest die in a hospital, nursing home, or long-term care facility.
According to a 2006 Pew Research Center survey, only about one-third of adults have an advance directive expressing their wishes for end-of-life care. When an accident victim enters the hospital in a coma, he no longer has the ability to make important decisions about his life—how long to remain on a ventilator, for example. Family members, along with physicians, then have to make these intensely personal decisions.
But it’s hard to know when to start thinking about it. When death begins is not clearly defined. “Are you dying once you get the diagnosis that we expect you’re going to die from?” says Malec. “Or are you dying when we can say your life expectancy is measured in days?” Most people, she says, think it’s the latter. The reality, says Soodalter, is that “at a very clichéd level, we’re all dying.”
Soodalter and Malec came at the question as physicians who practice within a complex health care system that’s focused on how to extend life. “From a physician’s side,” Soodalter says, “we’re taught to fight and we’re taught that death is the enemy and illness is the enemy. So then, when death eventually wins—as it will every time— then we’re out of tools. We’re out of even concepts to frame how we can keep helping our patients.” In 2012 during the first year of a hematology/oncology fellowship, Soodalter struggled with what she calls “the unspoken proximity of death in the room.” She took on her patients’ suffering—it wasn’t uncommon for her to see her 40-year-old metastatic colon cancer patient’s face when she closed her eyes at night. She felt totally alone.
Then she had an insight. “My undergraduate degree was in classics. I’m a visual artist, so I come from a background that is less scientific and biomedical.” She had put those parts of her life on hold while training to be a doctor. “I was thinking in medicine for 10 years,” Soodalter says. “I suddenly realized that the only way I was going to get through this was to bring all of that other stuff back in.”
“That other stuff” framed the Living Mortal Project. To gain the methodological skills to start thinking differently about death, Soodalter enrolled in the Master of Arts Program in the Humanities in 2013. Also that year, a conversation with Julie Marie Lemon, who ran the University’s Arts and Science Initiative (now the Arts, Science, and Culture Initiative), led to an informal faculty dinner and discussion that brought together social sciences and humanities scholars to talk about death from their disciplinary perspectives, a precursor to the later workshops. Soodalter also applied for the Neubauer Collegium funding that would support the Living Mortal Project.
Soodalter and Malec invited speakers from anthropology, art history, public policy, performing arts, literature, and more to lead the Living Mortal Project workshops. “Maybe we could lift some of the ways that they engage,” Malec says, “and bring them back to medicine and say, ‘Hey, this is a different way of looking at this.’” For “The Imaginary Funeral” Soodalter and Malec started with broad questions: What work do those artifacts help us do? Do they help us let go of people who have died? Do they help us hold on to people who have died?
Three guest panelists presented evidence from their fields without trying to make an argument. One was mortuary archaeologist Maria Cecilia “Nené” Lozada, AM’90, PhD’98, who excavates human remains from pre-Hispanic and colonial cemeteries in South America. Lozada recounted how she was studying a dismembered, mummified trophy head at the same time as her mother was dying. Her research brought Lozada to a medical facility to get a CT scan of the trophy head. Seeing the artifact in that clinical setting, she said, permanently changed the ways that she interacts with what were previously just specimens to her. Now “I always think about the person—who is behind it.”
The Living Mortal symposia explored death as “an existential, philosophical, species-level” experience, Soodalter says, “not just as a biomedical reality.”
Death is a biomedical reality—and a costly one. The Living Mortal Project is in part a response to the modus operandi of the US health care system. “We have been on an incredibly steep curve” of using technology to defer death, says Soodalter. “We’re really heading very rapidly toward a crisis.” Roughly 25 percent of Medicare spending is for patients who are in their final year of life.
The goal of Living Mortal, she adds, is not to save money or convince people to receive less care. Her research, and other studies, suggest that patients might not choose dramatic interventions when their bodies are failing, if given the opportunity to talk—and think—about it earlier. “Part of that,” says Malec, “just has to do with having conversations, being aware of it from outside of a crisis.”
Currently Soodalter and two research associates are interviewing colon cancer patients at the University of Chicago Medicine on their feelings about death, trying to understand what they call “death self-competency”—how well the patients can talk and think about their own mortality. In a companion study, they will interview physicians about the same topics—their patients’ mortality as well as their own. Doctors, Soodalter says, are in the “singular position of confronting both their own eventual death and the much more present prospect of their patients’.”
The questions are open-ended, in order to uncover themes that cross ethnic, socioeconomic, and religious lines. What are the person’s general feelings about death, and how have they changed? What role have religion and spirituality played? Soodalter has invited a philosopher, a religious studies expert, an ethnographer, and others to help analyze the interviews. Out of this she wants to develop a multidisciplinary intervention to improve end-of-life conversations in the clinical setting.
She isn’t sure yet what the intervention will look like, but she’s finding that patients often don’t even know that it’s OK to have these conversations. Health care providers don’t always bring it up if the patient doesn’t ask them. But, Malec says, even those who don’t want to talk about it have opinions about how they want to die.
Ideally, end-of-life care is a truly personalized form of medicine, she says. When the physician and patient sit down to talk about what’s most important, the conversations transcend medical treatment. Maybe the patient wants to pursue a therapy so he can make it to his daughter’s wedding. Or he may be tired and want to stop the pain. Doctors should help patients consider the end of life, says Soodalter, “at a time when they’re able to think about it and make decisions that are consonant with their values.”
So how can doctors better understand patients’ wishes? It’s not just a matter of asking. Doctors “meet people in these snapshots of time,” says Malec, who works in outpatient oncology. “We don’t have enough time to develop rapport and find out what’s most important to patients. ... You have to have a certain relationship” with a patient before you can discover what’s important to her. Soodalter agrees: “You have to earn that.” It takes time, and trust doesn’t develop over the course of one appointment.
In 2014 the Institute of Medicine (now known as the National Academy of Medicine) released a 600-page report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The key takeaway: the US health care system is ill-equipped to care for patients at the end of life. A shortage of doctors with palliative care training—and of those who understand what palliative care really means—is one of the biggest gaps that the report revealed. The report offers recommendations that include increasing financial support for dying patients and having more conversations, early and often, about death. (In October 2015 Medicare approved payment for voluntary end-of-life counseling with patients and their families, similar to what was proposed under the Affordable Care Act.)
As a specialty, palliative medicine is still relatively new in the United States; the American Board of Medical Specialties didn’t recognize it until 2006. It’s most common at large medical centers and is not always available at smaller hospitals. At its most basic level, palliative care is about relieving suffering for patients with serious illnesses, Malec says. “What we’ll often say is that our goal is to help every day be the best one that it can be, regardless of the number.”
It’s a common misconception that patients come to palliative care physicians only when they’re very close to death. Unlike hospice care, in which patients have a life expectancy of six months or less, palliative care can begin at any time.
Daniel Sulmasy, an internist and ethicist at UChicago Medicine with an interest in end-of-life care, believes palliative care should be discussed at the moment a serious illness is diagnosed. “As chances for cure might be diminishing, the need for palliative care might increase,” he says. “But we want to care for patients’ symptoms along the whole way.”
Malec started seeing her patient Martin Dippel more than two years before he died this past August (after being interviewed for this story). He was diagnosed in 2011 with an advanced form of cancer and began taking drugs targeting the cell mutation that triggered the disease. He also participated in two clinical trials. His treatment plan was “doing a good job of arresting the cancer’s growth,” Dippel said, “but we knew that it was not curative.”
Dippel chose to enter palliative care with Malec in 2013, after his oncologist suggested it. “I was having trouble eating and was losing weight,” he said. “I found someone to treat the smaller side effects with the same attention to detail as my larger problems. The side effects really affect your quality of life.” He was sent to Malec for symptom management, but at that point his cancer had already metastasized. She guided him through his decision making process, trying to understand what was most important to him. Dippel appreciated that Malec asked him straight out, “Where do you want to be at the end of your life?”
Malec learned that Dippel wanted to die at home, and when his physical state continued to decline, she suggested that he move into hospice care, “the path that is most likely to keep you at home,” she says. It did for him.
Choosing hospice care wasn’t easy, “but we never doubted Dr. Malec’s role in this decision,” Dippel said. “If we had to start building a relationship with a doctor at the time of choosing hospice, it would have been extremely difficult.”
Malec feels the same way; if she only met her patients right before they died, her job would be even more emotionally challenging, and she wouldn’t have the opportunity to help people live in the face of their illness. Working in outpatient oncology, she often sees her patients longer than, for example, those who are hospitalized for an acute illness or have entered hospice care. “That’s changed over time,” she says. “The longer I’ve been here, I see people earlier and earlier in the course of their illness.”
“I get the question a lot of, ‘How do you do this?’” Malec says. “There are times that are very, very sad.” But when she works with her patients over a longer time, “there are just so many more moments of humanity that aren’t sad.” She might talk with her patients about trips and visits with grandchildren and fun weekends. “Sometimes there’s humor and we joke,” she says. “When you get to actually know a patient you get more of that. Even within the sadness, you’re helping them live with that.”
In the late 1960s, Elisabeth Kübler-Ross led a seminar series at the University of Chicago’s Billings Hospital. Interviews with dying patients of different ages and backgrounds made up the lectures and course material. Out of these interviews, Kübler-Ross published her seminal 1969 book, On Death and Dying (Macmillan).
Her work was revolutionary—and not without its critics. Doctors in the 1950s and ’60s “epitomized the never-say-die stance,” wrote palliative care expert Ira Byock in the foreword to the 2014 edition of On Death and Dying, while “a patient’s values, preferences, and priorities carried little weight.” Kübler-Ross challenged this status quo. “Suddenly,” Byock wrote, “how people died mattered.” Whether she meant to or not, with the book’s publication Kübler-Ross sparked a “cultural movement to improve end-of-life care and restore illness and dying to the proper dominion of people’s personal lives.” She paved the way for the research that physicians like Soodalter and Malec are doing today.
The movement also influenced how physicians are trained. UChicago internist Sulmasy teaches an end-of-life care section of the Pritzker School of Medicine’s doctor-patient relationship course. A former Franciscan friar, he is the associate director of UChicago’s MacLean Center for Clinical Medical Ethics and since 2010 a member of the Presidential Commission for the Study of Bioethical Issues.
The section he teaches ends with “Otherwise,” by poet Jane Kenyon, who died of leukemia in 1995. The poem reflects on mundane, everyday activities with an underlying consciousness that it might not always be that way. “By talking to them in the language of poetry,” Sulmasy hopes to help them understand “the spiritual, if not religious, sensibilities of patients who are dying, the deep meaning that surrounds the process of dying, and the possibility that someone who’s dying could be their teacher.”
“The heart of ethics,” he adds, “is the notion that everybody is a somebody.” This philosophy inspired his research as part of the University of Chicago’s Enhancing Life project, a two-year collaboration with Germany’s Ruhr-University Bochum to understand human beings’ aspirations to make life better. Out of 35 scholars involved, Sulmasy is the only one focusing on death.
“Part of what I brought to the group was recognizing that one of the characteristics of the human ... is that we are finite, and that we can’t understand what life is unless we understand that it comes to an end,” he says. His work for Enhancing Life is designed to reconstruct the ethics of care at life’s end: “The function of medicine is not to relieve the human condition of the human condition.”
That condition is one of not only mortality but also finitude. “Finitude is not just about the fact that we will die, but the fact that we make mistakes, that we become sick, and that we can make moral mistakes too. That we’re finite physically, intellectually, and morally.” He pauses. “It’s a humbler approach to what medicine is.”
In her 1997 memoir, The Wheel of Life: A Memoir of Living and Dying (Scribner), written after a series of strokes, Kübler-Ross reflected, “Dying is nothing to fear. It can be the most wonderful experience of your life. It all depends on how you have lived.”
When patients accept that they are facing death, they often have a sense of peace, says Sulmasy, “a sense of wisdom that they’ve gained from their own suffering, their own lives as they’ve lived them up till now.” It’s what enables a dying patient, who may be in a lot of pain, to see a doctor enter his hospital room and simply say, “You look tired, doc.”
“Their concern for me is a remarkable thing,” Sulmasy says. In facing death, “they’re teaching me something about what it means to be human.”
Ruth E. Kott, AM’07, is a writer and editor in Chicago.
Updated 02.17.2016: Corrected to reflect that Medicare coverage for end-of-life counseling was only similar to what was proposed but later removed from the Affordable Care Act. The rule covering advance planning care that was approved in October 2015 was part of the Centers for Medicare and Medicaid Servicesʼ 2016 Medicare Physician Fee Schedule.