Judith Schwarz, clinical director of End of Life Choices New York and a pioneer in helping people retain control — and dignity — through their last moments in life, challenges us to consider details nobody wants to think about.
Everything gets more complicated when someone has dementia and can’t speak for himself — particularly when he hasn’t made arrangements in advance. Schwarz explains why.
The following New York Times article includes a link to a health directive that will prompt thoughtful answers to questions related to how long you would want to live with severe dementia. Use it. Share it. Talk with people who love you.
Despite my good health and (relative) youth, I scheduled a half-hour conference call with my loved ones on a Sunday afternoon (because you can’t expect to get everyone in the same place), and am following up with a personal letter to accompany the legal documents. I’m forever grateful that my father wrote a similar letter for my sister and me many years before he became ill, so I’m doing it too — just in case.
Excerpts from the article, written by Jane E. Brody:
“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue — they’re not done when dementia is terminal. Instead, a caregiver will stand patiently at the bedside and spoon food into your mouth as long as you open it. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.”
While trying to provide nourishment for a terminally ill person nearing death is commonly done in the name of comfort and caring, if that person cannot benefit from food or drink, it can become quite the opposite. When patients can no longer swallow what they are fed, they may choke and aspirate food or drink into the lungs, resulting in pneumonia that adds to their misery and hastens their death.