The Journey
A newsletter for chapter advisors, chapter officers, and regional officers.

My Mother's Near-Death Experience Taught Me a Lesson in Patient's Rights

I want to tell a story that relates to the issue of patients' rights in a variety of ways. My story has to do with privacy as well as an individual's right to decide about treatment. It also has to do with having enough information to make a medical decision.

The story begins one late afternoon at my college. Someone in my office said the nursing home where my mother was living had been trying to reach me. When I called them to find out what they were calling for, I was quite surprised to hear the nurse say, "Your mother was transported by ambulance to the hospital this afternoon; she's in intensive care."

I was immediately anxious because I had no idea there was anything wrong with her. When I arrived at the hospital, I was even more surprised to find out she had to go through the Emergency Room to Medical Intensive Care.

When I arrived at the Intensive Care Unit, what I found startled me. My mother was seated almost upright in bed. The oxygen was flowing through the tube in her nose. She was breathing very heavily and her rapid breaths were short and strained. I found out only a few things from the nurse; Mother's level of consciousness still precluded me from having access to all I wanted to know. I knew I was her medical proxy, for all that meant. I was also beginning to wonder how persistently the nursing home had tried to reach me. The nurse said quietly, "Your mother is drowning in her own fluids."

Piecing the scenario together as much as I could, I learned Mother had not been feeling well; this was unusual enough for the staff to call her physician. After a short series of tests, he determined she was anemic and dehydrated and would need to be hospitalized for care. I am not sure about what happened, but here is what I think happened.

The standard procedure for patient transport is to administer an intravenous solution. Since her system was dehydrated, the sudden infusion of liquid caused her condition to worsen, so by the time she reached the hospital she was taken to the emergency room. They treated her and administered a unit of blood, relatively quickly in light of her condition.

In the process of treatment she had been given fluids, which her body could not absorb as quickly as it could have if she had not been dehydrated. The fluids began to accumulate in her lungs and as the nurse had indicated, she was drowning. "You had better call her family," she said, "because at this rate she will not last the night." Mother had a Do Not Resuscitate (DNR) order attached to her medical file and I, not knowing any better, was abiding by that. The only thing left to do was to start calling my brother and my children.

That's precisely what I did. I first called my son, a pediatrics resident in Dallas at the time. "We're on our way, Dad," he said. His wife was an internal medicine resident at the same medical center in Dallas. My other daughter-in-law, already a practicing internist in Seattle, said, "Give me the doctor's name so I can call and find out what is happening." I did.

In retrospect, this is where my mother's right to know and my right to know as her medical proxy come into the picture. She did not know the treatment they administered was risky. She may have consented anyway, but I know she had no idea of the risk they were taking.

On my part, I was prepared to let her die because of her DNR order. I learned from my own children what her doctors should have told me. My children made me aware of my rights as her proxy because, by that time, she was incapable of making decisions on her own. My pediatrician son even wrote down the acceptable wording required for the doctor to effect an immediate change in her treatment.

Only when I confronted her primary care physician with the order to remove the DNR did he begin to pay attention to what I needed to know. Later, a pulmonary specialist brought onto the case treated us as though we were incapable of understanding anything but the simplest of concepts. When "my doctors" asked him for more information, he was rude enough to imply he only had one patient and that he was the doctor. He quit my mother's case before I had a chance to fire him.

My mother recovered and she stayed in the hospital for as many days as Medicare would pay the costs. Suddenly she was well enough to leave and return to the nursing home.

I learned a lot from this experience. I learned to question. I learned to be persistent and to ask for explanations and alternatives. I learned the importance of communication even though it was a lesson learned through the back door.

In retrospect I, like a lot of other people I know, let my respect for medical practitioners get in the way of my right to understand everything I needed to know to make an effective decision - in this case, a life or death decision for my mother.

Richard Rouillard is a professor of English at Oklahoma City Community College in Oklahoma. He has been a Phi Theta Kappa advisor for over 15 years and is a member of the Society's Honors Committee. Richard looks forward to serving as a Faculty Scholar at the International Honors Institute in Washington, D.C., June 9-15, 2003.

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This page last modified -- Friday, 14-Nov-2003 11:00:23 CST (pbd)