Doctors and patients in Massachusetts are not prepared for end-of-life care, and one-third of those who had a relative who died recently were disappointed in their care, according to a recent survey conducted by UMass Medical School and SSRS, and organized by Blue Cross Blue Shield of Massachusetts (BCBSMA).
In the survey of 1,851 Massachusetts residents, one-third of those who had a relative who had died recently said their loved one’s wishes were not fulfilled, according to an article in The Boston Globe May 12. One in five said their relative’s end-of-life care was fair or poor.
The key findings of the survey are:
- Eighty-five percent of those surveyed believed doctors should discuss end-of-life care with patients.
- Only 15 percent had ever had an end-of-life discussion with a medical provider, and only 25 percent of those with a serious illness had discussed their wishes with a medical provider.
- Fifty-five percent had not named a representative to make health care decisions for them, but 86 percent of those who had named a proxy had discussed their preferences with that person.
Melissa Clark, PhD, director of Research and Evaluation, a unit within UMass Medical School’s Commonwealth Medicine division, designed the survey in collaboration with the Massachusetts Coalition for Serious Illness Care. The survey research firm SSRS conducted the survey by telephone between March 8 and April 3. Clark and Stephen Kurtz, MS, a Research and Evaluation biostatistician, analyzed the data and prepared the report.
The results of the survey were released May 12 at the coalition’s inaugural summit at the Kennedy Library. Speakers included Gov. Charlie Baker, Pulitzer Prize-winning columnist and Conversation Project founder Ellen Goodman, and Atul Gawande, MD, MPH, co-chair of the Coalition, executive director of Ariadne Labs, and author of The New York Times bestseller, “Being Mortal: Medicine and What Matters in the End.” The coalition is a consortium of 54 health care organizations formed by BCBSMA and others to ensure the state’s residents get the end-of-life care they desire.
The survey highlighted the reasons end-of-life preferences aren’t discussed. Many of those surveyed said they weren’t sick and didn’t believe it was necessary to talk to their doctor or someone else about their end-of-life wishes, or choose a health proxy.