If you’re an older adult with a chronic or terminal illness, it is vitally important to tell your children or other loved ones what decisions you would want them to make about your care if you can’t make those decisions yourself. It’s also important to document those decisions in the form of a living will.
I often hear stories about families burdened with decisions that their elderly loved ones failed to make. Those stories are powerful cautionary tales that typically end with guilt and regret.
Stories about people who have communicated their wishes to loved ones can be just as dramatic but the outcomes are often very different.
One story in particular stands out.
A woman with a terminal illness called me and asked if I would draft a living trust. I agreed and we had our consultation in her hospital room. “My husband died six months ago and I’m ready to go be with him,” she told me in a matter-of-fact way. This was a woman who had made peace with the fact that she was dying.
“I know you’re hiring me to do the living trust so you can avoid probate,” I said. “Will you let me do a living will for you?” I explained the purpose of a living will, how it outlines a person’s preferences about the kind of care they receive at the end of life, and how it identifies the healthcare representative who is authorized to make healthcare decisions for an individual when he or she is incapacitated.
The woman agreed. I drew up the medical directives and she signed them along with her living trust.
After she died, her daughter came to see me. “I just wanted to thank you for taking the time to suggest that my mom fill out a living will,” said the daughter. Your visit made a tremendous difference.”
Then she proceeded to fill me on what had happened after my visit.
“Mom didn’t leave the hospital after that day you saw her,” she told me. “One day after work I came in to visit and two doctors were standing next to Mom’s bed as she slept. They didn’t notice me as I slipped into the room and sat down.”
“Even though they were speaking in low tones, it was clear that they were arguing,” she said. “Gangrene had set in to one of her legs and one of the doctors, an orthopedic surgeon, thought that the amputation should be done first. The other doctor, a thoracic surgeon, thought that cancer should be removed from the lung first.”
“And then I remembered the living will in my purse. I had been carrying it around for quite a while, not knowing when I might need it. And now the time had come.”
“My heart was pounding as I stood up. ‘Doctors, here’s a copy of my mom’s living will,’ I said as I pulled the document from my handbag. ‘I’m her healthcare representative and I have a few questions.’”
“And so I started asking. ‘Will these surgeries cure my mom?’ I asked. ‘No,’ both doctors said.
“’Will these procedures improve her condition?’ I asked. ‘No,” said the thoracic surgeon. ‘The cancer has spread and there is no way to cure it.’”
“’Will either of these procedures improve Mom’s quality of life so she can come home and spend time with the family?’ I asked. ‘No,” they both said. ‘Your mom needs a lot of care. She won’t ever be able to go home.’”
“Their candid responses, coupled with what I knew about Mom’s preferences for how her life should end, made it very clear to me how to advocate on her behalf. “’One more question,’ I said. ‘If neither of these procedures is going to cure her and nothing you’re proposing will increase her quality of life, then why are you talking about doing any of these surgeries? We’re talking about sawing off her leg and breaking her ribs to operate on her lungs when it won’t make her any better. I won’t consent to any of this.”
Had it not been for the mother empowering the daughter with a living will, the doctors in this situation would have gone ahead with both surgeries. This loving daughter was able to advocate for her mother’s wishes because she knew what they were.
This story underscores the importance of appointing a healthcare representative to advocate on your behalf. If you wait until you’re incapacitated, you’re putting family members in the difficult position of guessing what you would have wanted and not being authorized to act on your behalf. When that happens, there’s a good chance that your exit from this life won’t happen in the way you would prefer.
