- To Live Long Enough to Warm the Hearts of Others: Reflections on Informing my Patient about a Peaceful Way to Die*
“Sandra” quickly introduced herself to me after I picked up the phone. Then she urgently described her 92–year–old mother “Helen” as a fiercely determined woman who had just announced that she no longer wanted to live. While she requested Sandra’s help, she would still “do it” if Sandra refused. Helen was not terminally ill, not suffering unbearably, and not depressed. “She will refuse all food and fluids and wants me to stand by and help make her comfortable. So my question, Doctor is: If I help her, could I be prosecuted for elder abuse, or worse?”
I was about to explain that I am not an attorney but a psychiatrist and I do not offer clinical advice to people after two–minute phone conversations, when Sandra added, “Mom has not spoken to my brother Richard—the only other heir to her estate—for two years, so my share will be greater. A prosecutor could allege this was my motivation. Then her tone of voice changed and through sobs, she asked, “Could you try to change Mom’s mind? I really, really don’t want her to die.”
I saw them both the next day for three hours.
Briefly, Helen’s main physical complaint was an unsteady gait. She used a walker until recently, when she fell and broke her arm. Now she was housebound, more dependent, and worried about falling again. She was not clinically depressed and had capacity to make medical decisions about end–of–life treatment. Sandra was not subjecting Helen to undue influence; if fact, just the opposite: She tried to convince her mother to remain alive. When interviewed, they showed mutual warmth and benevolent feelings. Helen was engaging, open, lucid, and clear about everything except she deferred talking about her son.
The ultimate existential question was: Why die now? Helen enjoyed her daughter and a few remaining well friends. She admitted fearing more future disability, pain, indignity, and becoming an emotional burden to her daughter. She cited her own experience of taking care of her husband.
When Helen concluded her explanation with, “But I’m not there yet,” I asked, “How will you determine WHEN?” She admitted harboring the common, “Loss of Capacity Fear”: “If I wait too long, I no longer will be able to die when I want.” This fear was especially common among Alzheimer’s and related dementia patients, for whom it can be referred to as the “Dementia Fear.” In my practice, I often tried to persuade patients to complete diligent, strategic Advance Care Planning so they could feel confident that others would honor their end–of–life wishes by allowing them to die when they wanted. I referred to this approach to Advance Care Planning as “Plan Now, Die Later to Live Longer.” Helen was eager to complete all the forms and make an explanatory video to put this plan into place.
As I mulled over this long session, I felt pleased. I had fulfilled both goals in my professional role: to reduce suffering and to sustain life (if possible). Helen’s choice exemplified one of life’s greatest ironies: Knowing you can control when you will die, can—and often does—lead to choosing to live longer. I expected her to see how fully she could return to her previous level of functioning and to enjoy many more months of life.
Three days later, Sandra called. “Mom refused breakfast this morning. Sometimes that happens. But when she also refused lunch, I asked, ‘What’s up?’ She said she had begun her fast. So I have two questions: Can you bring or send us a Thirst Reduction Aid Kit? And can you try to persuade Mom to postpone her fast?”
On my second visit, I presented my usual arguments that often convince patients to trust their “Ironclad Strategy” so there was no need to die prematurely. But Helen had fears in addition to the [End Page 102] common ones (massive stroke and severe dementia). She pointed out that in October, 2003, then–Governor Jeb...