Two people, knowledgeable and experienced in end-of-life issues for other people, deal with those terrible questions personally.
Mr. Brenner’s voice had already weakened when I spoke with him briefly a couple of weeks ago. He was only 73, but 18 months of declining health and months spent in hospitals and nursing homes had sapped his strength. Still, when I asked how many people he thought he had helped to die, I could hear a quiet pride in his response. “Oh, thousands,” he said.
For more than 25 years, starting in the late 1970s when the word “hospice” still drew blank looks (and years before hospice became a Medicare benefit), Mr. Brenner led nonprofit hospice organizations. Yet when his health faltered, choosing to become a hospice patient himself proved unexpectedly difficult. That’s what I wanted to talk about.
My father and sister looked to me for my thoughts. In our family, after all, I'm the go-to guy for all things medical. I've been a health care reporter for 15 years: at the The Dallas Morning News, Los Angeles Times and now ProPublica. And since I have a relatively good grasp on America's complex health care system, I was the one to help my parents sign up for their Medicare drug plans, research new diagnoses and question doctors about their recommended treatments.Posted by Jill Fallon at March 18, 2013 12:18 PM | Permalink
In this situation, like so many before, I was expected to have some answers. Yet none of my years of reporting had prepared me for this moment, this decision. In fact, I began to question some of my assumptions about the health care system.
We knew her end-of-life wishes: She had told my dad that she didn't want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery? How did we know if the doctors and nurses were right? In all my reporting, I'd never realized how little the costs to the broader health care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn't get a chance to make it twice.
I asked Fisher: Did he consider what my family did a waste of money?
No, he said. And he wouldn't have found fault with us if we decided to keep my mom on a ventilator for another week or two, although he said my description of her neurological exams and test results sounded pessimistic.
"You never need to rush the decision-making," he told me. "It should always be about making the right decision for the patient and the family. … We have plenty of money in the U.S. health care system to make sure that we're supporting families in coming to a decision that they can all feel good about. I feel very strongly about that."