Right to Die in Peace, or Not?

We’re introducing a story that illustrates with perhaps painful clarity why the right to choice and personal autonomy in dying is needed in our “Live Free or Die” state.

The story contrasts a Vermont man, now deceased, and a New Hampshire man who is very much alive, but facing a terminal cancer.

Al and Susan Gillotti were married for 56  years. They lived all over the world – he was a banker and she a psychotherapist. They retired to Vermont in 2007. Four years later Al was diagnosed with brain cancer. He had surgery and radiation, and seemed to be in the clear. But in 2017, the tumor was back.

Frank Liva atop Mt. Willard on October 4, 2018, what he calls his “last normal day.” Fifteen hours later he was on his way to the emergency room.

In addition to being very successful in business, Al was a  creative storyteller and novelist, a talented landscape photographer, and a first-rate chef. As his disease progressed, he lost his ability to do all of these things. The things in life that meant the most to him, which gave him his identity, his purpose, and his joy, were being taken away – except for his wife, Susan, who stood with him through all of it.

At a certain point, Al’s doctors told him he didn’t have much time left, maybe 3 – 6 months, for they’d done everything they could. In Vermont, medical aid in dying is legal. Al decided that September 14, 2018, would be his last day. In the company of Susan, two dear friends, their minister, and a hospice nurse, he died.

“It was completely gentle and absolutely beautiful,” Susan says.  “Every one of us was awed. It was a great gift for all of us: Peace of mind.”

You can see a video of Al, Susan, and their minister discussing his death here: https://www.youtube.com/watch?v=qIY_6PB7GxI&t=2s

You can learn more about medical aid in dying in Vermont here https://www.patientchoices.org.

Contrast Al’s story with Frank’s. Frank Liva lives in Portsmouth, N.H. He and his wife, Bonnie, live in a beautiful house they rebuilt right on a back channel of the Piscataqua River. In his early 60s, Frank retired from a successful engineering career in Boston, and he and Bonnie were traveling, sailing, and doing the things that they always wanted to do.  But one evening about three years ago, only six months after he retired, Frank woke up with an odd sensation in his head and face. He feared he was having a stroke. He wasn’t. It turns out he has brain cancer, just like Al.  Just like John McCain and Ted Kennedy. Frank is in a clinical trial at Mass General and things are looking pretty good right now, but he knows the tumor will eventually kill him.  

Frank wants the option that when that brain cancer becomes too debilitating, he can choose his time and place of death with his loved ones with him. But he fears that medical aid in dying won’t be legal in New Hampshire in time for him. Instead, Frank told me when we first spoke, he imagines driving himself into a tree.

This is what people think about when they don't qualify for medical aid in dying even in the states where it's legal, let alone in states like ours where it's not. Why? Because they want to spare their loved ones the suspicion of complicity in their deaths. That our laws make them feel this is their only choice is unconscionable and immoral. Everyone should have the right to arrange their death as much as they can, with the people around them they want.

Frank is committed to working in every way he can to make it an option for others, even if not for himself. He has offered to share his story going forward. We are humbled and honored by his commitment, generosity, and spirit.