I let my father starve to death. It wasn't easy — I could have called for nourishment at any time — but I held firm because I was absolutely sure I was doing what he wanted.
How did I know? He had an end-of-life directive that explicitly stated he did not want assistance in eating or breathing — ever, under any circumstances.
But more important than the documentation were the many brief conversations I had with him about his end-of-life wishes. His wife — my mother — languished in a nursing home for 15 years after suffering brain damage from a cardiac arrest, and he was adamant he didn't want anything like that to happen to him.
And it didn't, because when he stopped eating I made sure his wishes were honored, but I'm not sure I could have had the nerve to go along with his wishes, despite all the legal documents, if I hadn't heard him express his wishes to me clearly and forcefully so many times.
Communication, and not just legal documentation, is essential for people to get the type of treatment they want for themselves at the end of life, according to Bernard J. Hammes, the editor of Having Your Own Say: Getting the Right Care When It Matters Most.
"But this is the type of conversation almost no one is comfortable having," said Hammes, director of Medical Humanities and Respecting Choices for the Gundersen Health System in La Crosse, Wis. "People seem to have the feeling that they don't know how to do this."
Besides, finding the right person to have the conversation with can be tricky. The person closest to you — the logical choice — may be precisely the wrong person, according to Hammes, because the people who love you the most may not be able to order treatment withheld from you.
"I was called into a case where it was clear from the documents and other information what the patient wanted, but the spouse who was appointed said, I think we'd better continue with treatment," Hammes said.
"The children argued with her. They said, 'Dad doesn't want this treatment.' It was a terrible situation. It's possible to go to court and get the person (with power of attorney for health care) dismissed, but that's a horrible road to take. So we continued with treatment that didn't make any sense, treatment that the patient would not have wanted."
To make sure their wishes regarding end-of-life treatment are honored, some people go outside the family and ask their pastor or their best friend. Some appoint an attorney.
But most people would rather choose a close family member, which makes discussing end-of-life treatment essential, according to Hammes.
"You need to say to the people involved, if I get this sick, this is what you need to do," Hammes said. "You need to say, this is really important to me, and I hope you will have courage to take care of me in this way. This isn't about patient rights or patient autonomy; this is about how families care for each other in times of crisis. When the decision is guided by how we care for each other, families have the courage to honor the patient's wishes. Talking about this is so important. Seeing the patient's wishes in a document can be very reinforcing, but it helps if, when we pull out the document, the family can say, yes, we talked to him about this; we know this is what he would want. This is hard for us, but this is what Dad would want."
Tom Valeo writes frequently about health matters. He can be reached at [email protected]