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New Survey Shows People Who Express End-of-Life Care Wishes More Likely to Receive Care They Want

New research on end-of-life care from the Massachusetts Coalition for Serious Illness Care. Visit here.

BOSTON, Mass. (May 15, 2018) – Massachusetts Coalition for Serious Illness Care (The Coalition) shared the results of the first ever survey to track change over time on improving end-of-life care in Massachusetts. The survey, a representative sample of 1,500 Massachusetts adults, found that compared to 2016, significantly more Massachusetts residents reported that care for a dying loved very much honored and followed their wishes.

The survey also confirmed the importance of communication in improving end-of-life care. For example, 92 percent of families who said their loved one talked to their care team many times about their wishes said those wishes were very much honored, with 73 percent of them also rating their loved one’s care quality as excellent or very good. That figure dropped to 55 percent of wishes being honored for those whose loved ones had fewer such conversations with their care team, with only 50 percent of those families highly rating their loved one’s quality of care.

Quality, and Quantity of Care

“With these survey results, we see the first signs of positive change,” says Atul Gawande, M.D., M.P.H., co-chair of The Coalition, executive director of Ariadne Labs, a joint center of Brigham and Women’s Hospital and Harvard T.H. Chan School of Public Health, and author of the New York Times bestseller, Being Mortal. “It’s encouraging to hear that more people’s wishes are being honored by their clinicians at the end of life. This suggests we’re changing the culture of caring in Massachusetts for those with serious illness. We believe this is happening in part because of the heightened expectations of patients and the responsiveness of clinicians. But, there is much more to be done. We should be providing cutting edge care for quality of life as well as quantity of life, and too many people who are dealing with a serious illness are reporting that we are not.”

The Coalition, an umbrella organization representing more than 90 organizations working to ensure that everyone in Massachusetts receives health care that honors their goals, values, and preferences, released the results of the survey today at its third-annual summit. The research, conducted through random-digital dial telephone interviews, was done in partnership with UMass Medical School.

While experiences at the end-of-life seem to be improving, the survey also revealed that several key underlying indicators have remained flat. It’s still the case that less than half the population has a health care proxy. Only 27 percent of those with a serious health condition have talked to their doctor about their wishes for care near the end-of-life, and only about 15 percent overall are talking with their doctors about their wishes for care should they become seriously ill.

We should be providing cutting edge care for quality of life as well as quantity of life, and too many people who are dealing with a serious illness are reporting that we are not

The survey also found that people in Massachusetts are more likely than people in the nation as a whole to talk to doctors about health care proxies. However, people in Massachusetts are less likely than the national average to talk to doctors about their wishes for care or about where they want to receive care, and are also less likely to talk to loved ones about their care wishes.

Change Requires Time

“We know from other major public health successes – from tobacco to seatbelts – that it takes time to bring about significant change,” says Maureen Bisognano, co-chair of The Coalition and president emerita and senior fellow at the Institute for Healthcare Improvement. “And sometimes the biggest changes start small: the efforts of one nurse, one pastor, and one hospital department. The good news is that there is amazing work on serious illness care going on in every corner of the Commonwealth, work that feels increasingly connected. That is the foundation we’ll need to continue making progress toward the change we all want to see.”

The Coalition helps promote health system change by working in areas, such as education and training, health care information technology, quality improvement, and communications. Current initiatives to improve care for serious illness include: working with the four Massachusetts medical schools, as well as nursing and theological schools to teach communications skills involving patients and families dealing with serious illness; collaborating with the Massachusetts eHealth Institute, Executive Office of Elder Affairs, and Department of Public Health to promote electronic sharing of advance care planning materials.

To receive a copy of the comprehensive survey results, please contact Deborah Halperin Colbert at 617-269-7171. You can find the results online at www.maseriouscare.org/2018-consumer-survey-full-results.

 

 

 

About the Massachusetts Coalition for Serious Illness Care
The Massachusetts Coalition for Serious Illness Care includes a diverse set of organizations committed to ensuring that health care for everyone in the Commonwealth reflects their goals, values, and preferences. Each member organization commits to tangible initiatives to help advance this collective mission. These groups include physicians, nurses, hospice workers, counselors, clergy, hospital and health plan administrators, social workers, attorneys, policymakers, researchers, and other health professionals. The Coalition is funded by Blue Cross Blue Shield of Massachusetts, the Rx Foundation, and a variety of sponsoring organizations. To learn more, visit maseriouscare.org.

 

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