Despite significant health expenditures, many people are experiencing longer periods of poor health and disability at the end of their lives. The gap, in fact, between life expectancy and healthy active living is estimated to be about 10 years.
“We need to normalize conversations about death and dying,” Julia Kasl-Godley said to an audience this week at the Yale School of Public Health. “When the dialogue turns to death panels and rationing health care, we are not honoring people’s wishes.”
Kasl-Godley was awarded the inaugural Stanislav V. Kasl Memorial Award for Research Excellence in a ceremony and lecture in Winslow Auditorium on Thursday.
A psychologist, Kasl-Godley, PhD, is Kasl’s daughter and a leader in the palliative care movement. Her father, a long-time professor at the school, passed away last year.
Palliative care is not the same as hospice care. Rather than focusing on end of life care when treatment of disease has been stopped, typically in the last months of one’s illness, palliative care coordinates medical care and services for people with chronic diseases, sometimes for years.
Six out of 10 Americans die of chronic diseases such as heart disease, cancer, stroke and diabetes. Under the palliative care model, these patients, who are actively receiving curative treatment, receive coordinated symptom management, support for quality of life issues, care transitions, family support and attention to psychosocial and spiritual needs of both patients and caregivers.
A 2014 Institute of Medicine report demonstrates that palliative care saves on medical costs, by reducing the number of emergency room visits, ICU stays and hospital readmissions due to better patient management.
The number of palliative care programs in U.S. hospitals has nearly tripled since 2000, reaching 61 percent of hospitals with more than 50 beds. Hospice programs have grown steadily since the 1970s and now number 5,500 nationally. Both approaches are expanding their reach through home care programs, yet even within hospitals with the programs, many patients do not receive their services.
So why is palliative care not more widespread? “It’s complicated,” said Kasl-Godley. There are “perverse financial incentives” and fragmented care delivery. Under fee-per-service payment models, there is no reimbursement for end of life conversations, and medical practitioners are trained to cure disease, not manage it. In addition, health care systems are not designed fulfill social service needs for many patients.
“We still focus on death as an outcome of disease.” Acknowledging that death is part of the human continuum, Kasl-Godley suggested that some different research questions should be asked, such as how to measure quality of life. Health care professionals should also be trained in discussion of end of life issues and working in cooperative interdisciplinary teams that can meet patients psychosocial and spiritual needs.
Dean Paul Cleary cited Kasl-Godley for her work with the Stanford Veterans Affairs Hospice and Palliative Care Program as well as her research on mental health and aging. She is co-author of the book, Teamwork in End-of-Life Care, and has worked on a variety of interdisciplinary care teams and is an administrator in the Interprofessional Palliative Care Fellowship program. She received her Ph.D. in psychology from the University of Southern California. Kasl-Godley has conducted research on dementia management and Alzheimer’s caregiving and presents widely on aging and end of life issues.
Stanislav Kasl was a pioneer in the area of psychosocial epidemiology of aging and mental health epidemiolgoy. This annual award and lecture series was established by the Department of Chronic Disease Epidemiology faculty to annually recognize a leader in the field.