The ability to shape one’s own story, author and physician Atul Gawande writes, “is essential to sustaining meaning in life.” A chosen life empowers people at any age, but is particularly important when time grows short, when that story nears its end.
“Our most cruel failure,” Gawande writes in his extraordinary best-seller “Being Mortal,” lies in not understanding that people who are sick and dying “have priorities beyond merely being safe and living longer …. We have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.”
Two years ago, an extraordinary Northampton woman helped bring this message to our community. The late Lee Hawkins spoke out first in a news story, then in a forum organized by the Gazette, about her desire to have her final chapters, when they arrived, tell the story of a mentally strong and independent woman. Then came Hawkins’ resolve: she would cease eating and drinking when she felt advancing infirmity was about to rewrite that.
She put her plan into motion in the summer of 2014 and died that September at home at the age of 90, surrounded by her adult children.
Hawkins shaped her story, as Gawande says people should, and in doing so got many others thinking about their own.
This year, a dream team is inviting people throughout the Valley to do the same.
The Forbes Library in Northampton is working with Cooley Dickinson Hospital and two dozen Valley libraries to explore Gawande’s message. Through April 20, they are providing supportive sessions about end-of-life decisions at which people can pose the many, many questions that need answers.
Libraries are all about books, so Forbes’ leadership in this “community read” isn’t unusual. But make no mistake. The two-month program that began Saturday in Ashfield and continued Wednesday in Northampton is no simple book group. The institutions are performing a vital community service by helping people understand a difficult and contentious issue.
Two Cooley Dickinson representatives are attending presentations to provide medical insights. They are Dr. Jeffrey Zesiger, a palliative care expert who helped advise Hawkins, and Leslie Kelly, a nurse practitioner. In addition to sessions at 11 libraries, the hospital is holding events, including a March 18 talk in its Watson Room at 1 p.m. and a presentation March 19 in its Community Room at 2 p.m. on the use of advanced directives, such as the Medical Orders for Life Sustaining Treatment, a document known by the acronym MOLST.
More than a dozen local librarians are opening their facilities for discussions. They include Katherine Hand in Sunderland, Barbara Goldin in Southampton, Julie Cavacco in Deerfield, Raymah Hutchinson, Patti Shaw and Nora Blake in Easthampton, Jodi Levine in Pelham, Christie Quigley in South Hadley, Sheila McCormick in Belchertown, Lisa Downing and Molly Moss in Northampton, Lynn Gringas in Westhampton and Linda Wentworth in Amherst.
The next sessions will be held March 19 in Amherst, March 22 in Westhampton, March 24 in South Hadley, March 26 in Sunderland and March 29 in Southampton. For a full schedule, visit forbeslibrary.org or cooley-dickinson.org and search for “Being Mortal.”
Downing, the Forbes assistant director who is a key organizer, says librarians have long believed in the power of books to get people talking about things that are important to them. To make sure enough books are available, the program is using $3,000 donated to the cause to provide copies, including versions in large print and in electronic formats.
Zesiger, who directs CDH’s Palliative Care program, says people will come away from these events knowing more about steps they can take to live their last years on their terms. A lot conspires against that understanding, he notes. “Our society is neither comfortable with nor used to discussing serious illness or dying.”.
The subtitle of Gawande’s book is “Medicine and What Matters in the End.”
It’s a question worth sitting down — with family, neighbors and experts — and really thinking about. Before we’re mortal, we can be sensible. Act before circumstances conspire to write a different story.