WBUR: Many reluctant to discuss end-of-life care with loved ones, doctors, UMass Medical School survey finds

May 11, 2017

There is growing awareness that if you want your wishes followed for the medical care you are given – or not given – at the end of your life, you should talk about it in advance with your loved ones and doctor, says a new report co-authored by UMass Medical School for the Massachusetts Coalition of Serious Illness Care.

Yet for a significant number of people, actually having those conservations remains difficult, according to an article on WBUR’s CommonHealth.

The report details the findings of a survey designed by Melissa Clark, PhD, director of Research and Evaluation, a unit within UMass Medical School’s Commonwealth Medicine division. Clark, also a professor in UMass Medical School’s Quantitative Health Sciences, co-authored the report with Quantitative Health Sciences colleagues Julie Flahive, MS, and Sharina Person, PhD.

According to the survey, 96 percent of those who responded agreed with the importance of having those conversations, 35 percent have yet to share with anyone their wishes for the medical care they will be given at the end.

Part of the significance of the survey’s findings is that they were not drawn from a random pool of state residents, but rather from those who responded last year to a similar UMass Medical School survey on end of life issues.

While the results point to progress in terms of a growing awareness of how critical it can be to make end-of-life desires known in advance, it also points to challenges as well.

A majority of the 300 of those re-contacted from the survey last year – 62 percent – had not spoken about their end of care plans with the two most important people with the power to actually enforce their wishes:  their health care agent or proxy, typically a spouse or child, or their medical provider.

Another 28 percent had spoken to either their designated health care proxy or their doctor, but not to both. Just 10 percent followed the recommended course of action and spoke to both.

Most, 71 percent, said it was easier to figure out who they were going to leave their money to - matters typically covered in a will - than to “plan for treatments I do or do not want at the end of life.”

Still, roughly 30 percent of those surveyed said they had heard more about end-of-life care issues over the past year. And 80 percent agreed that they “don’t want care that reduces quality of life below what they are willing to accept to be kept alive.”

By contrast, just 14 percent want their caregivers to do “whatever it takes” to keep them alive.

While many people may feel anxious about discussing their end-of-life wishes, those who have had the talk report afterwards that it wasn’t hard, according to the UMass Medical School survey.

More than three quarters of those who wound up speaking with their doctor about their end of care plans reported the conversation was “not at all difficult.”

The same was true for those who said they had discussed the issue with someone other than their doctor, such as their health care proxy/loved-one, with two thirds saying it was not difficult.

The Massachusetts Coalition of Serious Illness Care released its latest report as it kicks off a “write your own script” campaign aimed at getting Massachusetts residents to make their end of life wishes known.

The campaign is being led by Atul Gawande, MD, MPH, co-chair of the coalition, of The New York Times bestseller, “Being Mortal: Medicine and What Matters in the End.”

The coalition is made up of 54 health care organizations across the state, including UMass Memorial Medical Center.

“Less than half of Massachusetts residents have a health care agent or health care proxy and we haven’t had discussions at all what our goals and wishes are,” Gawande said in a video on the WBUR website. “That is something we can change.”

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