It’s universal. We lose people we love, and we will die, too. But there are qualitative differences in how we die and how we grieve. Over the past three decades, Holly G. Prigerson, Medicine at Weill Cornell Medicine, has studied how to improve the quality of end-of-life care and to diagnose and ease grief in its most intense and debilitating form. These are some of the main aims of Weill Cornell Medicine’s Center for Research on End-of-Life Care, which Prigerson codirects with collaborator Paul K. Maciejewski, Radiology.
“As a graduate student, I never imagined that our research would resonate with so many, but it’s because it matters to people,” Prigerson says. “Everyone dies and everyone’s family members die. This isn’t a rare event. Everyone is going to face these life and death issues, and viewing it with the blinders off benefits patients and their loved ones.”
By applying the methods and insights of social science to death and grief, Prigerson has discovered that improvements in communication can make the difference between a good and bad death and between normal bereavement and prolonged disabling grief.
Conversations: Doctors, Families, and Dying Patients
The communication between a doctor and a terminally ill patient can have profound effects on how the patient dies. Prigerson’s research shows that doctors often don’t share and patients often don’t hear the information they need in order to make informed decisions about their care.
In a 2016 study, Prigerson and her team found that just five percent of 178 terminally ill patients fully understood the extent of their illness. Close to 40 percent of patients, all who had an estimated six months to live or less, had not discussed their prognosis or life expectancy with their oncologists. The possible reasons for this are many. One may be that doctors worry that a bad prognosis could lead to depression or hopelessness. Prigerson has found this not to be true.
“Does it make patients significantly more depressed, hopeless, or anxious? The answer is no,” she says. “It actually helps patients plan more effectively and get better end-of-life care and that leads to better bereavement adjustment for their loved ones.”
Another reason doctors may not discuss life expectancy with very ill patients is that more treatment options are always available, even if not life-saving. Doctors may be eager to offer options that extend life at any cost, while others may be enticed by financial incentives to offer more care. In most cases, Prigerson has found that end-stage, anticancer treatment causes more harm than good.
Prigerson’s group looked at the effect of palliative chemotherapy—chemotherapy offered to improve quality of life and extend life expectancy in terminal cancer patients. She found that patients who underwent these therapies had lower quality-of-death, as observed by caretakers and family members in the final week of life.
These studies have spawned ongoing projects, investigating the role of race, ethnicity, religion, and even citizenship status in end-of-life communications between doctor and patient. Funded by prior and current multi-site, longitudinal research grants and a seven-year Outstanding Investigator Award from the National Cancer Institute, Prigerson and her team are finding that effective conversations need to include oncologists and be tailored to the patient’s background and belief system.
“Our hope is that the research can help identify ways for clinicians to communicate more effectively so that patients and their families better understand their options and can make informed choices,” Prigerson says. “If patients want more aggressive care, they should know that their last few months are going to be very hard. I see the end-of-life studies as leveling what economists call an information asymmetry between patients and doctors. The research encourages the patients and family caregivers to know and make medical decisions based on realities and not fiction.”
Prolonged Grief Disorder (PGD)
Another branch of Prigerson’s research has focused on the experience of family members and caregivers who survive the loss of a loved one. Early on, after completing her PhD in Sociology at Stanford University, Prigerson worked at the University of Pittsburgh’s Western Psychiatric Institute and Clinic, where she made an observation that would eventually revolutionize the approach to grief.
“I noticed that the grief symptoms weren’t the same as the depressive symptoms,” Prigerson says. “And I asked why are we focused on only symptoms of depression when grief symptoms appear high and aren’t going down with antidepressants?” During her subsequent postdoctoral work at Yale University, Prigerson and her collaborators designed the Yale Bereavement Study, funded by the National Institute of Mental Health, which defined diagnostic criteria for a new disorder based on her observations called prolonged grief disorder (PGD).
“I noticed that the grief symptoms weren’t the same as the depressive symptoms.”
After years of studies by Prigerson and others to refine and validate the criteria, PGD is now included in the newest edition of the International Classification of Diseases and in the appendix of the Diagnostic and Statistical Manual of Mental Disorders. The disorder affects between seven and 10 percent of the bereaved and is characterized by persistent and debilitating grief that endures six months, post-loss and beyond. “Some might say, isn’t it normal to pine for someone every day and yearn for them for six months? We showed that it’s really not the norm and that those who are significantly high on the list of symptoms at six months post-loss endure years of distress or disability, suicidal ideation, drinking and smoking more, job loss, divorce, etcetera.”
A diagnosis of PGD predicts these negative outcomes over and above diagnoses such as depression or post-traumatic stress disorder, Prigerson continues. “There’s something about being in this chronic, intense state of yearning and wishing this had never happened that prevents people from moving on and engaging in a rewarding life.”
For those with PGD, having a diagnosis in and of itself can help. “I get a lot of people calling to thank us for identifying PGD because no one has understood what they’re going through,” Prigerson says. “They’re getting treated for depression, and no one understands why they’re not able to move on. Identifying the problem in a way that helps people who are grieving and helps those around them understand—that’s rewarding.”
At the Center for Research on End-of-Life Care’s website, members of the public can take a “Grief Intensity Scale” survey and based on their answers, receive a recommendation for next steps. Prigerson is now seeking foundation support for a standalone website, “Finding Your Way Through Grief,” that will provide the grief intensity survey as well as a free online intervention to help people who are grieving. “It might not be adequate for severe cases, but for the vast majority of people, it will help them adjust better to their loss,” Prigerson says. “We’ve published the data on PGD. Now we want to use it to help people.”
Prigerson has also developed tools to help practitioners diagnose PGD and is working on other intervention strategies to help loved ones cope with loss. One intervention that’s becoming popular, called EMPOWER, helps the loved ones of patients dying in the Intensive Care Unit. These patients are often sedated, disoriented, or intubated, unable to communicate what their wishes are for end-of-life care. “That puts intense pressure on the family member who may be overwhelmed or confused about what is happening. We’ve published data showing that when a person is in a state of shock and disbelief, he or she can’t process information and make good decisions,” Prigerson says.
EMPOWER consists of 15-minute sessions with family members that include mindfulness exercises, education about end-of-life care, and role plays, where loved ones can think through the difficult decisions they may have to make. Prigerson and her team are working to tailor the program to different demographics.
Prigerson came to Weill Cornell Medicine in 2014, lured in part by the diversity of New York City and the prospect of directing a Cornell-wide center dedicated to end-of-life care. “Weill Cornell Medicine has embraced end-of-life research, without concern for what big pharma might say. They recruited me to do the exact kind of research that I want to do in the city I was born in and love,” Prigerson says. “I love the richness, diversity, and freedom of thought and expression that seems to be in the spirit of Cornell. That open-mindedness makes me feel at home.”