I'll always wonder: Could I have done more?

The author wasn't there when his patient faced her most important medical decision.

By Joseph F. Cohan, MD
General Practice/Santa Maria, CA

I had my own name for Mrs. Johnson. I called her Mrs. I'm-going-to-do-things-my-way. She was in her 80s, intelligent and knowledgeable, and wanted nothing more than to be left alone by her caregivers. But I was her friend, and I wanted to make medically sound decisions at every turn. She taught me how profoundly a doctor can regret those decisions. Her wants should be the ones that count. Looking back, I may have done too much for her—and yet clearly I did not do enough.

Here's a sampling of Mrs. Johnson: Several years ago, she'd had free air under the diaphragm, but refused surgery saying she wanted only to die in comfort. Antibiotics pulled her through.

She was diabetic, and had peripheral neuropathy absent DP and PT pulses. But she wouldn't let us evaluate the source and extent of the vascular problem. She put up with her insulin regimen, but occasionally refused to be stuck to have her blood sugar measured. Over the years, as the pain in her legs increased, she refused all pain medicine except at night. But she'd swear and strike out at the staff when they did anything that was painful to her, like trying to move her.

She'd had bilateral mastectomies in her 60s that left her both disfigured and uncomfortable, with lingering tenderness in her chest wall. But she cared about her appearance; she spent an hour or more grooming herself every morning. As her legs progressively worsened, she spent her days in a wheelchair. Since she'd alienated most of her family, she had only an occasional visitor. She and I played bridge twice a week, but otherwise she seemed comfortable being by herself.

On several occasions, I had a psychiatrist come by the extended care facility to verify my sense of Mrs. Johnson. She was indeed competent to make decisions about her health or anything else, he said. I seldom thought her choices—particularly medical ones—were the best, but she chose to make them.

Finally, the time came when Mrs. Johnson's pain grew so intense that she agreed to Doppler and intravascular studies, so she could at least understand her choices—pain medication, revascularization, or amputation. I went to the hospital to be with her, and she was touched by that. But I knew things didn't look good. The Doppler looked terrible.

Thanksgiving was upon us, and I had travel plans. So I arranged for the vascular surgeon to apprise Mrs. Johnson of the test results and outline possible treatment plans. I told her that I'd be back in a week, and we'd discuss her course of action then.

Two days later, I phoned her care facility and was shocked to hear that she'd been admitted to the hospital for surgery. Since she and I had grown so close over the years, I'd expected that she would have waited for me before making such an enormous decision. But since I couldn't do anything useful from a distance, I finished the week with my family, as planned.

By the time I returned, she'd had bilateral above-the-knee amputations. I was very upset, though not totally surprised. I visited her several times at the hospital, but she was usually too groggy to communicate. Within a week, she was back at the extended care facility. She was still rather confused because of the pain meds, but her leg pain was going away and the stumps were healing nicely.

On one visit, I glanced briefly into her room, but didn't see her. "Where is she?" I asked. "She's in her room," was the reply. Ohmygosh. With that quick glance, I'd seen only the lower portion of the bed, where the covers lay flat. I'd expected to see bumps there, her feet. How could I have allowed myself to forget what she'd just been through?

Thinking back, I didn't realize the immensity of what was going on. It got me wondering what she must have thought when she woke up to find half of her body stolen. Even though her physical pain had been torture, she at least knew she was a whole person. Now she wasn't, and she quickly let us know what that felt like. Morose, no smile, no spark. And except for the occasional pain pill, she refused all intake.

Somehow, she had tolerated the disfiguration of a bilateral mastectomy years ago. But the amputations were too much. They made her give up, lose her will to continue. She was my living lesson that physical pain may not be the worst agony a person can endure.

Mrs. Johnson died within a week of being returned to the extended care facility.

Retrospect can be a good tool for evaluating your treatment. But it's also a good way to beat yourself up. Why did I leave for that Thanksgiving vacation, rather than staying, helping her with this crucial decision, and supporting her? Or why, after all those years, couldn't I have gotten through to this lady before her condition got so far out of hand. And so on, and so on.

In any case, I will think very hard before I allow any limb or other significant part of me to be removed. Mrs. Johnson taught me that there's more to life than theoretically correct medical judgments. Perhaps in the future, proper informed consent will require that we provide photos that give people a better sense of how destructive some "necessary" operations can be.

I don't know why, at the height of her pain, she didn't opt for morphine. Perhaps she knew that surgery would be the one way to make us "leave her alone." Regardless, I choose to hide by accepting that she was competent to make her final decision. It's too painful to think of it any other way.

 

Joseph Cohan. I'll always wonder: Could I have done more?. Medical Economics 2002;8:43.