When I was a first-year resident, I admitted a 34-year-old HIV-positive man to my inpatient general medicine service for fevers. On physical exam, I found a large lesion on his right retina near the macula (the retina’s center). I called up an infectious disease specialist, who confirmed what I’d suspected: he had CMV retinitis.
CMV retinitis is an infectious disorder of the eye to which immunocompromised patients (patients with a weakened immune system) are particularly vulnerable. Like most of the secondary infections that afflict HIV patients, CMV retinitis is opportunistic, meaning brought on by infectious agents already present in a patient’s body that begin to run amok when normal immune system function becomes compromised enough that it can no longer hold the infection at bay.
Because of the proximity of my patient’s lesion to his macula, he was a high risk for losing his sight. At the time (the early 90s) two choices for treatment existed: foscarnet or gancyclovir, both of which had to be administered intravenously for extended periods of time. For this reason, one way or another, he’d need an indwelling venous catheter placed.
This was no minor procedure: he’d need to be taken to the operating room, anesthetized, and intubated. A large-bore catheter would then be inserted into one of the large veins in his chest and the line tunneled under his skin and made to exit at a distant site. More likely than not, the line would remain a permanent addition to his body. CMV retinitis tended to recur.
After discussing the options with my infectious disease consultant, we decided IV gancyclovir was the best choice. Both drugs had significant side effects, but at the time we thought the risk/reward ratio tilted more favorably in gancyclovir’s direction. So I went to discuss our recommendations with my patient.
He became indignant that all we could offer him was intravenous medication and alarmed that he’d need to take it for so long that he’d require a tunneled catheter. He became angry that he needed to go to the O.R. to have it placed. He cried when he learned its placement would be permanent.
I told him how sorry I was that we had no better alternatives to offer. “But without treatment,” I said, “there’s a really good chance you could go blind.” And not just in his right eye. He had a smaller, more peripheral lesion in his left eye as well.
“I don’t care,” he told me, and ordered me out of his room without committing to a decision one way or the other.
Dutifully, I came back an hour later to talk about it again. The conversation started more calmly, but soon escalated into hysterics once more, with him accusing me of wanting to hurt him. I told him I’d come back again in another hour.
In total, I spent six hours that day in discussion with him, neglecting my other patients out of an urgent desire to save his vision. I was convinced that placing the catheter and treating his CMV retinits was the only real option and employed all my powers of persuasion to get him to agree.
Finally, around 4 o’clock in the afternoon, reluctantly, he did. Worried that he might change his mind at any moment, I quickly contacted the surgeons, who jumped at the opportunity and brought him into the O.R. 45 minutes later.
When I came to see him the following morning, however, he greeted me with open hostility. “How could you have talked me into this?” he demanded. “I should never have agreed to it.”
Though taken aback, I secretly remained pleased. Now he would get the therapy he needed. I stayed to talk through his regret anyway, spending another full hour but accomplishing little.
Other specialists came to talk to him, but he remained sullen and withdrawn. Eventually, though, he agreed to start the gancyclovir treatment. I went to see him just before he left the hospital, hoping we could make peace. But he wouldn’t forgive me. “It’s all your fault,” he said, and I had the distinct sense he didn’t just mean the catheter, but the CMV retinitis, and even his HIV disease as well. He’d acted, quite frankly, like a petulant child during his entire hospitalization, but all I could think about was how awful his circumstances were, so I said nothing.
I spent several days reflecting on the experience, unable to shake the feeling I’d done the wrong thing. I’d helped save his vision, sure, but somehow to him that seemed almost unimportant.
And wasn’t what he thought—what he wanted—of paramount importance? Who was I to say having a catheter tunneled under the skin of his chest was worth doing in order to save his vision? In my view, he’d been operating under a childishly limited perspective, seemingly unable to focus on any facts but the ones immediately in front of him, namely, the risk and discomfort involved in having the catheter placed. But what if the discomfort simply wasn’t worth it to him? Of course, had we not placed the catheter and he’d gone blind, he almost certainly would have turned around and cursed us for allowing that to happen. I strongly suspect that no matter what we did and what happened to him as a result, he would have been unhappy and unhappy with us. And really, I’m not sure I can blame him.
My experience with him taught me two important things. First, no matter how wise I may believe a particular course of action to be, if I wield all my persuasive power to convince a patient to take it when they don’t really want to, I put them at great risk for regret and myself at great risk for being blamed when things go wrong, as they sometimes do. As a result, my posture has changed. I no longer press my case until I win my patients over. Instead, I present a balanced rationale for doing what I think is best, communicating honestly my concerns about not doing it and my concern about my patient’s well-being—but I now take great care not to imply that I know what’s best for my patient better than he or she does. For me it’s become more about education and partnership than persuasion. Even when my patients make what I believe is a foolish choice, I let them know how I feel, but I exert no pressure on them to change it.
Because the second lesson my experience taught me was this: I may think I know what’s best (after all, who wouldn’t choose to tolerate a permanent indwelling catheter to save their sight?), but any judgments I make about what’s best are, by definition, based on my own values. If more than sixteen years of medical practice have taught me anything, it’s that people have different priorities. I must always help patients sort through their fears to arrive at what seems like a good decision, but it must always be a good decision for them, not for me.
Because, of course, neither the patient nor the doctor really knows what choice will prove best. We only know statistical likelihoods. And sometimes we all get a surprise. Case in point: three weeks after my patient went home, his vision preserved, he developed bone marrow failure from the gancyclovir and died.
Next Week: The Whimsy Of Serendipity