Narrative Inquiry in Bioethics

I was then 63 and, as now, was quadriplegic from severe multiple sclerosis. I had spent 10 weeks in a nursing home against my will to heal a pressure sore. Because of bad nursing home care, I became dehydrated, kidney indicators in my bloodwork were severely abnormal, and I [End Page 212] developed a fever. I was then hospitalized in the local community hospital.

During that hospitalization, three things happened that had a significant bearing on my case. First, my mother arrived from England to visit me. She had wanted to visit while I was in the nursing home, but I'd discouraged her from doing that because transportation between my house (where she'd be staying) and the nursing home wasn't easy. Second, Laura (not her real name), a good friend and my health care proxy, came to visit not just me but also my mother, whom she'd befriended over the years. Third, Simon (again not his real name) had gotten to know of Laura because his mentee was applying to work with her husband as a physician. He also had an association with the hospital I was in as a senior physician.

When my mother arrived, she spent the first night in my house, which she had done many times before, although not alone, and came to visit me the next morning. She appeared her usual self, although perhaps not quite as lively as usual, but that was easily attributable to her transatlantic flight. That night she vomited. I was alarmed but she said it was the "travel bug" which she'd had before.

The following morning she visited again but also Simon came, not only to see me but also to visit my mother because, via Laura, he had become very interested in my mother's World War II survival story. (My mother was a Holocaust survivor. Partly through this connection, Simon and I later became good friends.) Again my mother vomited that night and now I was very concerned. But I was sick in hospital and despite my pleading with her to get medical assistance, I was limited in what I could do. I'd alerted two friends but all they could do was take her to a strip mall urgent care clinic. (My previous experience of such places, not for my own care, is that they're worse than useless.)

Laura arrived the next day by train. Like me, she's also a wheelchair user and doesn't drive. When she met my mother, she saw instantly that she was not well. After another night of vomiting, my mother now recognized that she needed medical intervention, so it was not difficult for Laura to send her to the Emergency Department of the hospital I was in. Laura followed by bus and quickly found that my mother had been taken for an emergency CT scan. Laura then came to my room, told me what had happened, and we both waited anxiously for the radiology report. The physician from the Emergency Department called later with the news: There appeared to be a blockage in her Gastrointestinal Tract, a very serious condition requiring emergency surgery. The surgeon called late that evening and told us that the surgery had gone better than he had expected but that she would still have a long recovery starting in the Intensive Care Unit.

What started with just me in the hospital now turned into my mother and I both in the hospital, one floor apart, Laura shuttling between both of us providing invaluable assistance, and Simon also helping behind the scenes. After a day or two, my mother and I could finally videoconference via the hospital's WiFi network. I almost forgot that not only did I still have to recover, but I also had to organize my homecare from scratch.

I was in dispute with my care organization and particularly my Primary Care Physician (PCP). I was not just quadriplegic: I had absolutely no control of my arms, hands nor legs. I needed assistance with everything: getting out of bed in the morning, toileting, showering, dressing, feeding, etc. I wouldn...