What happens when elderly parents tell one child that they want their end of life to be handled one way, yet a sibling wants to do something else? What happens in blended family situations when there is a second (or third) spouse and kids from one or more previous marriages involved?
I once had two of these situations in the space of a single week.
In one case, a woman called me about her mother, who had fallen unconscious after a severe stroke. “So what’s the problem?” I asked. “You know what her wishes are. She has an advance directive.”
“I do know what her wishes are,” she agreed. “Mom wouldn’t want to be hooked up to any machine for any reason. But my brother wants to have a feeding tube inserted because if we don’t he’s afraid she will suffer and end up starving to death. He’s worried that it’s cruel not to give her nourishment.”
It’s a common scenario. Everyone knows what the parent wants yet one sibling wants to override those wishes (often motivated by guilt) or has a different way of interpreting those wishes.
In this case, I knew that a little client education might break the stalemate. Not everyone understands how body systems gradually power down as a person prepares to die and that tube feeding can interfere with that natural process. It’s not the kind of thing that people talk about at a cocktail party.
“Does anyone in your family work in the healthcare profession?” I asked. She told me that the brother who wanted Mom to have the feeding tube had a godson who was an EMT. “Ask the godson to explain to your brother what happens to the body when a feeding tube is inserted,” I said. “I think your brother will come around.”
And he did. Situations like these can be very delicate. Emotions run high and everyone wants to do the right thing. Sometimes it takes a little time and information for the whole family to agree on what that right thing is.
In another case, a man in a nursing home had Pick’s disease, a rare type of dementia that causes progressive destruction of nerve cells in the brain and can lead to paranoia, violence and loss of speech.
The man was having difficulty swallowing food and the nursing facility wanted his wife to consent to the surgical insertion of a feeding tube. That’s when she called me.
“Well, are you confident you know what your husband’s wishes would be,” I said, remembering that I had done a living will for him awhile back and that she had been appointed his healthcare representative. I remembered that the man didn’t want a feeding tube.
I also remembered that she was his second wife. “Does he have any family from previous marriages?” I asked. She said that he did—a brother and a sister in-law who both agreed with her decision to forego the feeding tube.
A little more digging revealed the root of the problem. Staff members at the nursing home were pressuring the family to have the feeding tube inserted.
“If you’re confident that you know what he wanted, and you’re the healthcare representative, the nursing home staff is obligated to follow your wishes,” I said. “And if they won’t, they’re legally obligated to find someone who will follow your wishes.”
My client held her ground and the nursing home looked for other ways to feed him. They ended up pureeing his food and found he could take it by mouth without choking. It worked and the man ended up living another 18 months without a feeding tube.
What’s the lesson? If you get your affairs in order before you’re incapacitated and make sure your family knows what your end-of-life preferences are, it’s easier for them to be your advocate. It’s important to be clear about the kind of care you do—and don’t—want. You also want to make it as easy as possible for the family to act as one. Even if just one member of the family is authorized to act as the healthcare representative, the goal is unity. You want everyone in the family to be confident that things were done according to your wishes. What you don’t want—or need—at a time like this is ill will from those who think things should have been done differently.
