This year, I once again gave the lecture on truth-telling, or as I have started to call it, "disclosure dilemmas." I try to cover the waterfront and review all the situations in which doctors have information they might choose not to share. We talk about whether students should introduce themselves as "doctor," whether any doctor should tell the patient it is their first time doing something, whether informed consent should include general outcome statistics, or those of the institution, or those of the individual doctor. We get into mandatory reporting requirements and the tensions they place on confidentiality. And, of course, we talk about delivering bad news, about giving bleak prognoses. Each area has zones in which things seem relatively black and white, and zones in which there are shades of gray.
During this winter quarter, I was also attending on the wards. When I came on service, one of the patients was an eight-month-old who was unable to eat by mouth. An ex-preemie, she'd had some birth asphyxia and a moderate intraventricular hemorrhage. Each month, the doctors tried to convince her mother that she would need a G-tube--a feeding tube inserted into her stomach through the stomach wall. At each discussion, the mother adamantly refused. So the baby had a nasogastric tube in place instead. She got all her nutrition, but it didn't seem like the best long-term solution. I arranged to meet with the baby's mother.
I started the discussion by asking her what she understood about her baby's condition. She looked at me suspiciously, like she'd been down this road before, and like she wished I'd cut to the chase. But she was experienced enough, too, to know that she was going to have to humor me a little bit.
"My baby was a preemie and had some brain damage. They told me she might never see, hear, walk or talk. But she's been doing better, much better."
"That's great," I said, "Babies are always surprising us. What have you noticed, in particular, as signs of progress?"
"Well, she's more alert, she smiles a lot more when she sees me, she's breathing more off the vent...."
"That's fabulous. I think we're up to eight hours per day off the vent now. If we keep that up, we should be have her home on just nighttime ventilation. That would make life a lot easier during the day."
"What about her eating by mouth?"
"Well, she's doing okay with that."
Our speech therapists had recently evaluated her. They said her suck and swallow reflexes were totally uncoordinated. Since she wasn't aspirating what she had in her mouth, they were continuing to work with her, but they thought there was no chance that she would ever be able to eat by mouth.
"One of the things I wanted to talk about," I said, "is getting a G-tube. Our speech therapists think it'll be months or years before she is able to eat by mouth. They're worried that the NG-tube will just cause problems during that time. It is uncomfortable, it may increase her chance of getting pneumonia, and she is starting to learn how to pull it out. Have you thought anymore about a G-tube?"
Mom stared at the floor, and her body was tense. It felt as if the temperature was rising in the room.
"Look," she finally said, her voice now trembling with emotion, "After my baby was born, I thought she was going to die. When she was in the NICU, I took six months off work and I never left her bedside. I've been through everything with her. She had lines, she had chest tubes, she had surgery...." She paused. She seemed to be on the verge of tears. "And now, she's doing fine. And I just went back to work. I just don't want anybody cuttin' on my baby anymore. She's doing fine."
Back in ethics class, I described this interaction as an example of a situation where it was difficult to deliver bad news. A student raised his hand.
"But you didn't tell her the truth. Your speech therapists told you the baby would never eat. You told the mom it would take a while till she could eat. I thought you were encouraging us to tell the truth."
He was right. As so often happens when we go back and forth between practice and theory, the cases undermine the principles. We don't practice what we preach. Our behavior indicts our teaching.
As a teacher, I was happy that the student had noticed this and spoken up to point it out. As a role model, I was a little sheepish. I thought I could defend my conversation, but it would have been complicated, circuitous, casuistical. And after all, I wasn't completely sure whether it was my behavior or my theories that needed to change.
The next day, on rounds, the baby's mother was sitting beside the crib. She had a mysterious look on her face. She triumphantly informed me that her baby had taken five ccs by mouth the day before, more than she'd ever taken before. I was thrilled.
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|Title Annotation:||in practice|
|Publication:||The Hastings Center Report|
|Date:||May 1, 2005|
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