I recently found myself advising a client whose mother had just entered an assisted living facility to read an article written by Michael Wolff called “A Life Worth Ending,” published about a year ago in New York Magazine. Here’s a link: http://nymag.com/news/features/parent-health-care-2012-5/
Pondering my recommendation, I realized that all my clients should read this article. That includes seniors doing the planning work for potential incapacity and children of aging parents. The article poignantly sets out the choices we face either as seniors or as their children.
After setting out the statistics, that by the year 2050 there are projected to be 19 million Americans over the age of 85, and 15 million with dementia, Wolff points out that:
“By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.”
More touchingly, Wolff describes sitting by his mother’s bedside with a crushing sense of guilt for keeping her alive and wondering: “Who can accept such suffering–who can so conscientiously facilitate it?” He describes her noises of “harrowing despair” when her diaper is changed and tells that before his mother lost all language, he could by concentrating discern that she was saying over and over: “It’s a violation. It’s a violation. It’s a violation.”
Years ago, I made the observation to a law partner about an elderly partner who could not find his own office in our single floor office layout, that I wanted someone to “shoot me” if I ever reached that state. “Ah,” he said, “the trick is knowing when.”
Those who are planning for their future need to read Wolff’s article because we can all give clear guidance to are children about “when.” An advance directive can inform those who will be making the decisions for us if we are incapacitated what quality of life would be unacceptable to us or not. Would we want to continue, for example, if we are unable to recognize loved ones or cannot have a clear conversation with them? Would we want to continue if we were permanently unconscious with little chance of waking up? Would we want to live on if we were dependent on others for all activities of daily living or were in the end stages of a disease where no more treatments will be helpful?
Once we identify conditions that would be unacceptable to us, we can then identify the interventions that we do not want if we are in those conditions. We can refuse a ventilator, artificial nutrition and hydration, or even the antibiotic to treat a new condition.
My husband I have an agreement: if we reach one of these unacceptable conditions, we don’t want treatment for the next urinary tract infection. This one instruction could have saved my mother from a long period of permanent confusion from dementia.
Pneumonia used to be called “the old man’s friend.” The medical establishment, trying as it does to cure illness, may or may not be our friend in some circumstances. Unless we take positive steps to plan for incapacity, some of us will find ourselves in Michael Wolff’s “no-exit state” against our will and our desires.