Unfortunate Paradox: Most in Massachusetts are more comfortable writing wills for after our deaths than controlling how we want to spend the end of our lives
People think end-of-life conversations will be challenging, but 76% of respondents said speaking to their physicians was not at all difficult
BOSTON, May 9, 2017—Nearly everybody in Massachusetts—96%—believes that discussing end-of-life care plans with both our loved ones and our health care providers is important, but hardly anyone does it, according to a new survey released today by the Massachusetts Coalition for Serious Illness Care.
The survey shows there is a vexing gap between what we think and what we do. Only 10% of respondents reported speaking about their wishes to both a health-care provider and a health-care agent—someone designated to make health care decisions on their behalf. And, more than one-third of participants (35%) had not spoken to anyone about their end-of-life wishes.
Part of the problem may be that for many, advance care planning seems daunting. Nearly three-quarters of survey respondents said they think advance care planning, to live the end of their lives on their own terms, is more difficult than planning how to divide their estates after they die.
“Significant work remains to achieve our goal to ensure that everyone in Massachusetts receives health care that honors their goals and priorities for their quality of life as well as quantity of life,” said Ariadne Labs Executive Director Atul Gawande, M.D., M.P.H., co-chair of the Coalition, and author of the New York Times bestseller, Being Mortal: Medicine and What Matters in the End.
“But the data shows hopeful signs as well,” Gawande continued. “Nearly everybody in Massachusetts now views discussing plans for their serious illness care as important. And, our survey found that almost 30% of respondents heard more about advance care planning in the last year than before. All of this indicates momentum toward making sure we have these important conversations.”
The survey showed that 80% of respondents said they didn’t want lifesaving medical care if it reduces their quality of life below levels they are willing to accept. And 14% percent said they want caregivers to do “whatever it takes” to keep them alive. The Coalition’s goal is to make sure all such wishes are known and honored.
The survey also found that, among people who had end-of-life care discussions with their clinicians, most (65%) initiated the conversations themselves. But when physicians did broach the conversation, the vast majority of respondents either considered it normal or were happy that their physicians brought it up.
“Physicians are still placing the onus on patients to bring up this important topic. The physician community has made great strides, but we need to do better. And, as our survey found, patients welcome these conversations,” Gawande said.
Physicians are a very important part of the advance care planning puzzle—but even a discussion with a physician isn’t enough to be certain one’s wishes will be upheld. That job often falls to a health care agent.
In Massachusetts, the health proxy form designates a single person to speak on an individual’s behalf, if they are not able to speak for themselves. While people can list alternates, the form’s intent is to empower a single responsible person. Many survey respondents seemingly did not have a firm grasp of the health-care proxy concept, responding that several different people were their agent.
“I’m encouraged to see the Coalition raising awareness about important medical conversations we all need to have,” said Massachusetts Governor Charlie Baker, whose administration is an active Coalition member. “My administration looks forward to working with the Coalition to explore how improvements in technology can simplify and facilitate the process used for individuals to relay their own wishes for end-of-life care.”
While process and policy may be roadblocks to advance care planning, personal experiences are spurring people into action.
For respondents who initiated their conversations—either with loved ones or physicians—recent experiences with the death of a family member or friend was one of the major reasons they broached the subject.
“Once somebody close to you has faced a serious illness, a conversation that once seemed abstract becomes far more real,” said Maureen Bisognano, co-chair of the Coalition and president emerita and senior fellow at the Institute for Healthcare Improvement. “But, people cannot wait for a loved one to have a difficult death before they consider their own wishes for care. And, as our survey found, the discussions aren’t that hard: 76% those who have had conversations with physicians said the conversations were not at all difficult. The same is true for 66% of those who spoke to their loved ones. The findings show there’s no reason end-of-life care discussions can’t be a normal part of life.”
The Coalition will unveil the complete survey results at a summit May 9 at the John F. Kennedy Library in Boston.. The summit also will be available to view via livestream here. Participate in the conversation about the summit by following #WriteYourScript on Twitter.
To receive a copy of the comprehensive survey results, contact Brenna Fitzgerald at firstname.lastname@example.org.
|How important is it to have conversations in advance with loved ones and healthcare providers about wishes for care if seriously ill or near the end of life?||96%- very important||4%- not/somewhat important|
|With whom have you had end-of-life conversations?||Only 10% of respondents reported speaking about their wishes to both a health-care provider and a health-care agent|
|30% had spoken to someone who was not a health-care provider or their health-care agent|
|35% had not spoken to anybody about their wishes|
|Which is harder: planning for end-of-life care treatments or planning for distribution of money after death?||71% of survey respondents said they think advance care planning is more difficult|
|Have you heard more or less about advance care planning in the last year?||Almost 30% of respondents heard more about advance care planning in the last year than before|
|Which comes closer to describing your own views on end-of-life care?||80% don’t want care that reduces quality of life below what they are willing to accept to be kept alive||14% want caregivers to do whatever it takes to be kept alive|
|Who initiated the conversation about your wishes for care if you were seriously ill or near the end of life?||65% of respondents said they initiated a conversation about their end-of-life care wishes|
|How difficult was it for you to have a conversation with a doctor or other healthcare provider about your wishes for care?||76% of those who had conversations with physicians said the conversations were not at all difficult||66% of those who spoke to their loved ones said the conversations were not at all difficult|
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 and the Rx Foundation. To learn more, visit maseriouscare.org.