Bioethics Forum Essay

“You Can Refuse This”

I recently landed in a New York City hospital due to complications from diverticulitis coupled with a severe allergic reaction to an antibiotic that I was taking to treat the condition. Fortunately, all turned out well and a month later I’m feeling fine. But I remain troubled by aspects of the experience that left me questioning how well the conceptually well-trodden concept of patient autonomy is playing out in the trenches.

As a long-time medical journalist with a bioethics background, I consider myself a reasonably savvy patient. But I ran up against the limits of both my medical and bioethical expertise in my hospital stay. “You can refuse this” — a line delivered by two different nurses at two different times — epitomized this barrier.

The first occurrence was in the emergency room. I was in serious pain from diverticulitis, but also was having serious anxiety because
of angioedema — the allergic reaction that was swelling my body, including my larynx and, I feared, my airway. A nurse brought morphine. I know from experience that this opiate makes me very disoriented and zoned out. “I’m not sure I want to take this,” I told her. “I’m worried because it might make me too groggy to pay attention to my symptoms.”

“You can refuse this,” she said, and started to walk away. I suppose this was, theoretically, a nod to my autonomy. But in practice it was
an easy way out of addressing my concerns. Ok, I can refuse this, but if I do, what is the likely course of the pain? As an “n of 1,” it’s not like I’m an expert in diverticulitis or angioedema, and I wasn’t quite up to Googling on my iPhone. I was counting on the medical personnel for that analysis. But an opportunity for meaningful dialogue didn’t happen.

Sure enough, the pain intensified. I told a different nurse that I was reconsidering the morphine. “Ok, we’ll get it,” she said. I repeated, “I amconsideringit, and want to talk about the side effects.” I suggested that maybe I could take a half dose. She looked at me and said, “Take the whole thing; you won’t conk out.”

I felt enormous relief. Someone who knew more than I did was calling the (almost literal) shots. I was unequipped to make a rational decision at that moment, and she mercifully took it out of my hands. I took the morphine, the pain subsided, and I still remained awake enough to call for emergency help when the angioedema worsened.

Calling the shots came up again, in the middle of the night after I was admitted. During one of the numerous wake-up calls that happen in the hospital, when someone comes in to draw blood, or change the IV, a nurse started swabbing my upper arm. “What are you doing,” I asked.

“I’m giving you a shot of heparin,” he said.

“What for?”

“It’s to prevent blood clots, because you’re lying in bed.” (At this point, I’d been lying in bed for all of 12 hours — no more than one does for a bad cold or flu).

“Really?” I said. “Am I really at the point where I need that?”

The magic words again. “You can refuse this,” he said.

I asked the nurse what the odds were that I would  develop a pulmonary embolism. He didn’t really have an answer, and I didn’t have the energy to pursue it. So I didn’t refuse, despite my preference to take the least amount of medication possible (and my subsequent Googling a week later, which showed I didn’t need it).

Fortunately in my case, the “appeals” to my autonomy were not life-threatening. But they can be, as Rebecca Dresser describes in an essay
inMalignant, the moving and marvelous collection she edited about bioethicists facing cancer. In her case, exerting her autonomy to refuse a feeding tube to maintain her nutrition while she was undergoing very tough treatment for cancer had dangerous and potentially life-threatening implications. Fortunately, she eventually relented and is glad she did. But she questions whether she was well served by her
autonomous appeal.

“Respect for patient autonomy is a major, if not the major, theme in bioethics,” Dresser writes. But this autonomy is a goal that entails a tool — shared decision-making. As Dresser notes, “Shared decision-making has become an axiom of contemporary medical education and practice.” However, “the practice of shared decision-making doesn’t always live up to the idea.”

In another essay inMalignant, Dan Brock, recounting his experiences as a patient for both prostate cancer and multiple sclerosis, raises similar questions. “In the new model of shared decision-making, there is more openness about medical uncertainty. . . . [but] this doesn’t mean that doctors must refrain from expression an opinion on the best option for a patient.”

As Dresser concludes: “Respect for patient autonomy does not require outright acceptance of every patient choice, but not all clinicians
realize this. Some clinicians confuse shared decision-making with a no-questions-asked approach to patient choice (an approach Norm Fost calls ‘autonomy run wild’).”

In my case, autonomy-run-wild was mildly disconcerting. In Dresser’s and Brock’s, it was downright dangerous. But the lesson of these experiences, to me, is that autonomy can too often be a bludgeon. If it is a sort of knee-jerk default that bypasses the means — shared decision-making –it can miss the ends — patient self-determination. You shouldn’t refuse that.

Mary Crowley is the director of public affairs and communications at The Hastings Center.

Posted by Susan Gilbert at 06/02/2012 09:37:35 AM |

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Hastings Bioethics Forum essays are the opinions of the authors, not of The Hastings Center.