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Karen Wentworth has given us all a gift. A tremendous, heartbreaking, instructive gift.
Through her willingness to share her experience with death, Wentworth has provided a meaningful look at life — its joys, its pains, and its inevitable destination. She not only demonstrated remarkable strength and grace through the ungraceful thievery of terminal cancer, she and her loved ones also showed great generosity in allowing a reporter to chronicle her experience as one of the first people to receive a prescription under Maine’s 2019 death with dignity law, and to share that experience with the rest of us.
Caitlin Andrews, a former BDN and Maine Monitor reporter now with Maine Public, spent over two years following Wentworth’s journey and the decision to end her life.
“Wentworth did not know choosing to live would bring crushing loss and deep joy,” Andrews wrote in the recent profile. “But she always knew two things: She would never be hospitalized again, and she would not suffer in her death.”
The story is both beautiful and brutal all at once. It details the years of health challenges that Wentworth faced, and the undignified way cancer robbed her of so many things she loved (“A lot of indignities for a classy lady,” her longtime partner said). It covers her detailed planning, her deep and complex spirituality, her work at a domestic violence resource center. It explains how she beat an earlier prognosis by over three years and lived to meet her grandson.
Photos from BDN photojournalist Troy Bennett and others provided by family offer glimpses into Wentworth’s life and end-of-life decision. From the unpleasant surgery scars to the radiant smiles of Wentworth and her grandson together, these images capture the pain and joy that surrounded this years-long process.
Wentworth’s careful planning is a consistent theme throughout.
“A plan was detailed in a small green notebook she kept next to a lamp in her South Portland home. It was easy to reach in case the appendix cancer that stole Wentworth’s strength, appetite and many of her organs for over a decade made a final play for her life,” Andrews explained at the beginning of the story. “The book had her do-not-resuscitate directive, plus phone numbers for the funeral home and burial grounds that would take care of her. It was meticulous, like its owner.”
It is unrealistic to think we could all be as meticulous, or as brave, as Wentworth. But we can emulate her preparedness by confronting the unfortunate fact that we too will die at some point, and it is important to have a plan. Unpleasant truths are still truths and we do ourselves no favors pretending otherwise.
It is never too soon to plan and make decisions about wills, do-not-resuscitate orders, organ donation, burial wishes and other end-of-life planning considerations. Hopefully they won’t be needed for a long time, and many of us will not be confronted with the advanced knowledge of death as Wentworth was, but the planning can still make a big difference — particularly for the loved ones left behind.
This chronicle of Wentworth’s own difficult decision also shows that Maine lawmakers and Gov. Janet Mills made the right decision in 2019 when they enacted Maine’s death with dignity law, which nearly 100 people have now used to access a life-ending combination of prescription drugs. According to a document from the Maine Department of Health and Human Services, this option is available to people “who are suffering from an incurable and irreversible disease that would, within reasonable medical judgment, result in death within six months.” The patient must be competent and able to both understand and communicate their decision.
Our lives are precious, and best defined by what we can do for others. But our lives are also our own, and as Karen Wentworth’s story shows, it is right that Maine people are now empowered to make a decision about how to end them when facing a terminal diagnosis. In life and in death, may we all have her grace, courage and kindness.