The truism “The only certainty after we are born is that we will die” is life’s most somber adage. Given life’s finiteness, it is a tragedy that so many people in the U.S. experience their last days in ways that they do not want and would not wish. Fewer than half of Americans have specified their wishes concerning the last days of their life. In our community, only 10 percent of patient records at Martha’s Vineyard Hospital contain “advance care directives” to guide healthcare professionals when they care for patients who cannot make their own decisions. We have witnessed tragedies when patients did not consider how they wanted to live their last days.
In those instances, doctors were forced to pose difficult questions to families who were unprepared to answer them. Patients who have avoided discussing their wishes with their family often leave their family conflicted, with feelings of confusion and guilt. Families then must grapple with how best to care for a person they love in the midst of the emotional upheaval that the serious illness of a family member brings.
Underneath the stark message that life is limited is the implicit admonition to live one’s life well. The certainty of our future death, placed in a proper perspective, can be liberating. The finality of life, as we know it, speaks to our present priorities as well as our future plans. Atul Gawande, the Harvard surgeon and best-selling author of “Being Mortal,” said, “You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.” Ironically, in considering how we want to live our last days, we can learn much about how we want to live today.
Healthy Aging Martha’s Vineyard (HAMV) sponsors Advance Care Planning workshops designed to help Vineyarders discern their desires about the end of their life. HAMV uses a model developed by the Conversation Project, a national nonprofit based in Massachusetts whose goal is “to have every person’s wishes for end-of-life care expressed and respected.” The method is simple — having conversations with those you love about what you would like done if you cannot make your own decisions.The impact of such conversations is transformative. La Crosse, Wis., a city of 51,000, sponsored a program similar to tThe Conversation Project. In that community, 96 percent of people who die have an advance care directive.
Having the conversation with one’s family or friends about one’s wishes is not simply completing a form to be filed in a lawyer’s office. Rather, in such a conversation, we learn about ourselves, about others, and about our relationships. The legalities of an advance directive, while important, are the least significant aspect of the process. Meaningful conversations about end-of-life wishes require thought and time. The payoff for such an investment of effort is enormous. In addition to one finding peace of mind, families draw closer together, and friendships reveal their depth.
Several well-known approaches to guide advance care planning exist. They include the Conversation Project, Five Wishes, and Honoring Choices. All travel the same path, however their approaches differ in nuance. Healthy Aging workshops discuss them all and provide contact information for each. The best format is the one that feels most comfortable. None is superior to the others. Conversation forms the essential core of all.
Finally, all ages benefit from advance care planning. A little-known fact is that when a child turns 18, a parent no longer has the right to their daughter or son’s medical information. For a young person without an advance directive, the tragedy of a devastating illness can be compounded by legal barriers. Advance care planning eliminates them.
Advance care planning sets out the parameters of what we value in life at any age. We learn what is vitally important to us. And in doing that, we can learn how we want to live not only in the future, but today.
This essay is the sixth in a series written by Leon L. Haley, Ph.D., and Robert Laskowski, M.D., on the aging phenomenon on Martha’s Vineyard. Haley is a Professor Emeritus of Public Policy at the University of Pittsburgh. Dr. Laskowski is a retired geriatrician and healthcare executive. Both writers are active members of Healthy Aging M.V.