Jim Lester called Compassion & Choices at the beginning of February 2010. He had several conversations with a member of our End-of-Life Consultation team, first by phone, then as speaking became more difficult, by email. His wife wrote this memoir of his experience in choosing how to spend his final days.
After my husband, Jim Lester, was diagnosed with amyotrophic lateral sclerosis, or ALS, life was not immediately too difficult for us. We made the necessary adaptations, we lived each day as fully as we could, and we spent a lot of time talking, planning and reminiscing. But gradually the disease took its inexorable toll. ALS is capricious and has its own design for each sufferer. In Jim’s case, the debility started in his lower legs, but was misdiagnosed for nearly a year. It wasn’t until his speech began to slur that the true diagnosis was revealed. Luckily, his hands remained mostly unaffected and he continued to type and to feed himself, although his pride would not allow him to continue playing the piano.
When Jim’s end drew in sight, he gathered his family together and talked about his options. He quickly perceived how distressing it would be for me—or for any of us—to have to procure pills or a gun or a canister of helium, (pretending it was for a children’s party), and a leak-proof plastic bag. Without access in Massachusetts to legal physician aid in dying, he was left with one acceptable option: fasting, an option that had been taken by a good friend of his.
In 1963, Jim had been a member of the first American Mount Everest expedition, and had remained close to his fellow team members over the years. The one he most admired was Barry Corbet, whose brilliant mountaineering career was cut short in a helicopter accident that rendered him paraplegic. Many years later, when Barry was diagnosed with terminal cancer, he convened his family and informed them that he was going to fast and refuse all liquids, a decision that his family could agree on.
The fasting option made sense to Jim, and it made sense to the rest of us. When Jim told his professional support network that this was his intention, all those helping him were greatly relieved because there is nothing illegal about fasting and refusing liquids. Jim put his wishes in writing and filled out every conceivable form having to do with his right to die. Once his papers were in order, he felt ready to embark.
Jim chose April 16, 2010, as the day to begin his fast. Once he ceased eating and drinking, his hospice nurse started coming every day, and the nurse’s aide came each morning to bathe him. During the first three days, Jim lived his life relatively normally. He emailed friends, he listened to music, he went outside in his wheelchair and snoozed in the sunshine. Our daughter, Alison, and her fiancé, Andy, flew in from Singapore, and Jim’s sister, Jane, arrived from D.C. They stayed in an apartment close by while our son, Toby, moved in with me in case I needed help with Jim during the night. During the day we all took turns being with Jim. We did no cooking at home so there would be no smell of food to distress him.
The nurse brought in palliative medicine to counteract anxiety and breathing difficulties, medicine that Toby, Alison and I administered via syringes under Jim’s tongue. And she showed us how to keep his mouth and his lips moist by using swabs and lip salve.
By the fourth and fifth days, Jim was visibly weaker, and those were the hardest days; mere existence for him was exhausting.
At the end of the fifth day, he moved into the hospital bed.
We located it in the bay window of our living room, from where he had a magnificent view of the sky and where he could listen to music on his fine hi-fi system. His last intelligible conversation with me went like this:
Me: I’m here, darling.
Jim: (with the flicker of a smile) I’m not.
Me: Are you comfortable?
Jim began to sleep more each day, but his vital signs remained strong. He was a singularly healthy man, and had it not been for ALS, I’m convinced he would have prospered into his nineties. It wasn’t until the tenth day of the fast that his nurse had trouble getting a heart rate.
That evening we recognized he was nearing the end. Alison, Andy, and Jane decided to keep the vigil with Toby and me. We checked Jim several times during the night and found his breathing very shallow. Something disturbed Toby and me at the same moment, 5:45 the following morning, and we went to Jim and put our hands on him. He was warm and beautiful, but there was no breath. He had accomplished his task peacefully and on his own terms, on the eleventh day of his fast.
Jim died in his own home, in a room full of light and flowers and some of the best jazz ever recorded, surrounded by those who loved him dearly and whom he loved with all his heart.
Fasting was the right option for Jim and for our family, and is one that more people should consider because of the comfort and legitimacy it offers. Jim died in his own home, in a room full of light and flowers and some of the best jazz ever recorded, surrounded by those who loved him dearly and whom he loved with all his heart. He was never subjected to trips to the emergency room, or invasive tests, or unpleasant procedures, or risky interventions, or inappropriate drugs. His fasting put him firmly in control and merely hastened death’s natural process, allowing him to outwit ALS and die with his dignity intact.