Finding out “not wanting to live hooked up to machines” means; mediation resources; etc.

Susan Weisberg, a wonderful hospice social worker who had a family member with Lewy Body Dementia, forwarded me this recent blog post in the New York Times.

The blog post is about a medical ethics professor who is part of a family that did not adhere to her father’s wishes for “not wanting to live connected to machines.”

The author makes three points:

  • “What I hadn’t considered before my father’s heart attack was the precise meaning of ‘not wanting to live hooked up to machines.’ When people say that, it’s unclear whether they mean that they don’t want to live for the rest of their days in this condition, or that they don’t want to live for even a few weeks like that. The question of “how long?” is one we would all do well to consider.”
  • “The biggest lesson I have learned is that every family should not only discuss end-of-life wishes but should act on them by filling out an advance directive. If my father had completed one, his end might have played out differently. By the time we told the medical staff that he didn’t want to be hooked up to machines, he already was, and we acquiesced in letting things take their course, with the hope that he might improve.”
  • “What I wished we had had…was a conversation with his physicians about end-of-life possibilities right from the beginning.. … Honoring my dad’s wishes meant taking him off the ventilator while we still had that option.  The timing was key, but no one explained this or advised us how to determine when the time would be right. We now shudder that, because of hope, we were slow to see this choice and might so easily have missed it. … [Confronting] the end from the beginning might alleviate some of the inevitable feelings of guilt that arise when people make the decision to end life support.”

You can find the article here:

Hoping for a Good Death
New York Times
By Elizabeth Reis
December 1, 2014 7:05 pm

Note that the POLST form in California ( gives people an opportunity to say that either they want no treatment, they want full treatment, or they want treatment for a limited amount of time.  If “limited amount of time” is selected, the person may state how long that is, whether it be a few days or a few weeks.

Anyone who is frail or who has a serious medical condition should complete a POLST form.  All of us should complete an advance care directive.