Commentary: Advance directives let patients keep control

It was Mother’s Day 2005, a beautiful spring day with a high blue sky. Our family had gathered in Charlottesville for the weekend, and we had a restaurant reservation for dinner that evening.  I remember that my dad and mom, ages 82 and 81 respectively, went for a walk around the neighborhood before dinner. They held hands. Dinner was wonderful. Three hours later we were in the Emergency Room at UVA Medical Center, and my mother was inches from death.

Even at 81, my mother was still working, almost full time. She still got her hair done every other Saturday and a manicure on alternating Wednesdays. When she got dressed for church on Sundays, she still wore three-inch heels. She’d had diabetes for many years, and it had damaged her vision. A few times a year, she would get a urinary tract infection (UTI). But she was still an active and independent person. What we didn’t know that beautiful day was that she had one of those UTIs. Apparently without symptoms; it was raging through her body. Back home after dinner, she went from feeling slightly unwell to unconsciousness. It took minutes. A few more minutes, and she was in the Emergency Department. When they told us to leave her bedside, she was surrounded by machines. Every one of them had an alarm, and every alarm seemed to be screaming. My mother was crashing.

One of the doctors came to us in the waiting area and said Mom was having trouble breathing on her own. The doctor asked if she would want to be intubated. We had no idea. Did we want them to intubate her? They needed an answer. We sat frozen.

As a social worker, I had an understanding of the question in front of us. If we said no, then that person who had been talking and laughing with us just a short time ago, would likely die.  If we said yes, she might survive, but perhaps not as the woman we knew. She might have permanent damage to her brain, or kidneys, or other organs. We might be condemning her to a life of dependency and limitations. Would she want that? Would she forgive us for that?

My father, brother, and I agreed in that moment that she should be intubated, and the doctors proceeded. We were very lucky. Mom survived, and she lived another five years. Within a month, her thought processes were clearly confused. It was the start of Alzheimer’s disease. She had a couple of years of generally pleasant confusion, a couple of years of difficulty mixed with some fear, and then one horrible last year.

But I still remember that time in 2005, sitting in the ICU room, and waiting for her to open her eyes. Eyes of recognition? Eyes of sadness and reproach? I would not wish that kind of vigil on anyone.

But our family learned from that experience. By the time that last year came for my mom, we had taken the time to think through how we would make the important decisions. And three years after that, when my father died, we were prepared for him too. It has been a great blessing for all of us to be prepared.