‘Dying Healthy Can Be a Worthy Public Health Goal’
From anti-aging beauty regimens to strict diets and medical screenings, Western culture places an immense value on the quality and preservation of life. Death, however, is a subject largely absent from daily conversation, and evokes fear and anxiety when raised.
But talking about death—and the policies and attitudes that shape it—is a healthy practice, a panel of speakers concluded yesterday during a School of Public Health Dean’s Symposium titled “Death and Dying: A Population Health Perspective.” More than 150 people attended the daylong event, which gathered authors, scholars, professors, physicians, storytellers, and public health experts for an honest conversation about an inevitable part of the human experience.
“The data is clear that 100 percent of us will die,” Sandro Galea, dean and Robert A. Knox Professor, said to a chuckling audience at the start of the program.
“And that’s okay,” he continued. “Our goal should be to think about how we approach death and dying at the population level, so we can live the healthiest, fullest, richest lives we can until such time.”
The notion of a “good death”—what it constitutes and if it even exists—was a central component of the day’s conversation.
“Death and dying is an issue that is characterized by a great disconnect between the universal experience we all share witnessing the deaths of our loved ones, and a reluctance to discuss honestly and publicly the policies and attitudes that have gotten in the way of ensuring the good deaths that we all no doubt seek,” said Jon Sawyer, executive director of the Pulitzer Center, which cohosted the event along with the College of Communication, the Center for the Humanities, and the Program for Global Health Storytelling.
Sallie Tisdale, a nurse at Providence ElderPlace, pushed back against the concept of a good death. She said the National Academy of Science, Engineering and Medicine’s definition of a good death—one that is “free from avoidable pain and suffering and in general accord with patients’ and families’ wishes”—is a fantasy.
“Death is a solitary experience,” Tisdale said. “How can we as a group decide what avoidable distress and suffering is? Only the person in the deathbed knows what that means.” Instead, she said, there is such a thing as a “mastered death,” in which people are able to “express themselves as long as possible.”
Many of the speakers’ analyses were informed by personal experience. Michael Hebb, author and founder of the Death Over Dinner movement, described how his initiative was borne from a communication breakdown within his family after the death of his father when Hebb was 13. Unable to talk about the devastating loss, his family members ate meals alone and mourned in silence.
But repression creates the perfect environment for disease, Hebb said, while talking about death “makes you funnier, improves intimate relationships, and increases your capacity to love.”
Jamila Michener, assistant professor of government at Cornell University, recounted how her mother’s battle with stage 3 pancreatic cancer was initially misdiagnosed years prior as acid reflux by doctors in her low-income Queens neighborhood. Her cancer wasn’t discovered until she saw a doctor in a predominantly white neighborhood in Ithaca. (Michener’s mother survived her cancer and is still alive.)
“My brother jokes that she lived because she fled where black people were,” Michener said. “The experience of dying wasn’t something she wanted to do in her own neighborhood.”
Other speakers explored ways in which people can exercise some control over their own dying experience.
“Spirituality is a primary strategy for integrating death into the human identity,” said Tracy Balboni, associate professor of radiation oncology at Harvard Medical School. Citing oncology studies conducted at four academic centers in Boston, Balboni explained that 78 percent of participating cancer patients claimed that religion was an important factor in dealing with their illness, and that it provided coping skills and a way to understand their illness and their life.
“We need a creative reintegration of spirituality into medicine in order to care for dying patients well,” she said.
Journalist Christopher de Bellaigue discussed the practice of physician-assisted death in the Netherlands, dubbed the “euthanasia capital of the world,” and where the practice is now widely supported after it became legalized in 2002 for patients experiencing “unbearable suffering with no prospect of improvement.”
De Bellaigue noted that the majority of the Dutch population opposed euthanasia when it was first enacted into law: “What interests me is where legislation leads to a change in dynamic in character and narrative. Public attitudes follow legislation.”
George Annas, William Fairfield Warren Distinguished Professor of Health Law, Ethics & Human Rights, challenged the American cultural approach that humans have to do everything they can to live as long as possible.
“Avoiding death is the goal of modern medicine,” Annas said. He argued that people should instead consider prioritizing quality of life over quantity of years lived, and suggested that it would be valuable to shift a portion of research funding into “things that make life worth living, such as decent housing and public transportation.”
“There is such a thing as dying healthy, and it can be a worthy public health goal,” Annas said.
Scheduled panelist Barbara Ehrenreich, author of Natural Causes, was unable to attend, so moderator Sharon Begley read a portion of Ehrenreich’s prepared statements to the audience: “I’m 77 years old and I love cheeseburgers and Popeye’s Fried Chicken. I exercise when I feel like it, and I refuse to submit to medical tests and screenings recommended to all people over 50.”
This approach to her health, Ehrenreich explained, makes her an “outlier in our culture … where death is seen as some kind of failure.”
Panelists also discussed dealing with grief after a loved one dies, and the lack of resources available to properly treat mourning family members and friends. Katherine Keyes, associate professor of epidemiology and codirector of the Psychiatric Epidemiology Training Program at Columbia University Mailman School of Public Health, detailed how unexpected loss can lead to symptoms such as depression and post-traumatic stress disorder.
“There’s something very specific to the loss experience itself,” said Keyes, who herself lost her ex-husband to suicide. “Losing someone close to us is very destabilizing.”
Moderator Diane Gray, chief innovation & advocacy office for Acclivity Health Solutions and a board member of the Elisabeth Kübler-Ross Foundation, urged the audience to “become more engaged in the community of healing [filled with] empathetic, compassionate, caring individuals.
“There is no reason in our country for us to continue the legacy of shame and stigma that surrounds grief.”