Opinion: Why I support the End of Life Options Act

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By LUCY KARL

Published: 02-01-2024 6:20 AM

Lucy Karl is a devoted mother and retired attorney in Hopkinton.

A bipartisan group of New Hampshire legislators has introduced end-of-life legislation, which gives true meaning to our state’s motto: “Live Free or Die.” The New Hampshire End of Life Options Act (HB 1283) will provide terminally ill adults the option to gently alleviate their pain and suffering at the end of life through medical aid in dying. This option is already available in 10 states and the District of Columbia, and bills are pending in 17 other state legislatures this session.

I share our family’s story because we experienced firsthand how vitally important it is for patients to have the right to die comfortably and peacefully in their own homes, surrounded by their loved ones.

On the day before Thanksgiving in 2019, my beautiful, strong, courageous 34-year-old son died in his home state of Oregon, five years and 11 days after being diagnosed with advanced pancreatic cancer. Alexander (we call him Xan) lived his life fully until the final weeks of his life despite enduring more than 60 rounds of chemotherapy, and numerous surgeries and radiation treatments. Despite his will to live and all the agonizing, debilitating treatments, the cancer continued to invade his body and Xan made the decision to enter hospice in late October 2019.

Tragically, Xan was bedbound within days. Having lived his life intentionally since the moment of his diagnosis, he was now committed to living his life intentionally to the end. This included his decision to pursue his options under Oregon’s Death with Dignity Act.

Xan and his wife had fulsome discussions about his decision to pursue his right to a peaceful death at home, surrounded by people he loved and who loved him. Xan had seen friends die of brain metastases and witnessed how ugly and painful the dying days could be. He did not want that for himself, and he adamantly did not want his loved ones to witness his agonizing death. He was also deeply comforted knowing that obtaining the prescribed medication did not mean he had to use it. He retained a sense of being in charge over his last days. Cancer was no longer in charge.

The relief my son expressed, and we observed, after he met with the prescribing physician was palpable. He said, “Mom, I can die on my own terms.” Knowing the prescription was in his home, and that he could take them when/if he was ready, gave Xan tremendous solace in his last week of life. As it came to pass, Xan ultimately decided not take to the medication; but he exercised his legal right and freedom to have that option. This decision is not unusual. About one-third of terminally ill adults who get a prescription for medical aid in dying don’t take it, but they get great comfort and peace of mind from having it in hand if they need or want to take it.

While hospice and palliative care provided some relief to my son, medical aid in dying provided him peace of mind, critical to him in his last days. His peace of mind as he lay dying was and continues to be a tremendous comfort to his wife and our family.

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Watching my son die was heartbreaking beyond words. What gives me solace as I continue to navigate the tremendous void in my being is that my son was lucky enough to live in a state that recognized his personal autonomy, his self-determination, and his right to die peacefully, privately, preserving his personal autonomy until his last breath. Here in New Hampshire, we proudly proclaim that we are the ‘Live Free or Die’ state. These words are not only a motto on a license plate. They are aspirational in formation and purpose. Death will come to all of us.

In his final days, my son exercised the freedom to confront death on his own terms. Those who love him dearly and bore witness to his last days found sustaining comfort in his decisions. For the terminally ill, without the right to a peaceful and purposeful death, can we truly say we “live free?”

I promised my son as he was dying that I would fight for this legislation as fiercely as he fought the cancer that killed him. The vast majority of Granite Staters want this option: seven out of 10 New Hampshire residents support medical-aid-in-dying legislation, while only one in six oppose it, according to an October 2023 UNH Survey Center poll.

I fervently believe that New Hampshire citizens should have the option to alleviate their suffering when they are dying as my son had. Whether they choose that option is the freedom in “live free or die.”