Morality, Grief and Unwritten Rules

I had a patient had Calciphylaxis, a rare and often fatal disorder. He was mentally competent, had many probing questions and wretched symptoms.

He was in the hospital recovering from a surgery to temporarily alleviate some of the symptoms of the disorder.

The doctor wouldn't answer the patient's questions or describe the terrible morbidity and high mortality associated with Calciphylaxis.

The staff nurses couldn't answer the patient's questions due to lack of knowledge of this uncommon pathology.

The patient was both frustrated and terrified.

I faced a dilemma: What were the institutional rules, both written and unwritten, about who tells the patient about a poor diagnosis and prognosis? What happens when communication between doctor and patient fails?

More specifically, could I tell this patient about his diagnosis and disease process?

I wanted to ask my clinical instructor for guidance, but I had a foreboding feeling that she might issue a "gag order" with this patient. I could not have abided by this, I am a staunch believer patient's rights.

Putting my education on the line, I went into the patients room with printouts about his condition. I answered all his questions, even the hard ones.

He had been talking about going on a vacation with his girlfriend, and he asked, "So, you think this stuff will be better in a few years so I can go on that vacation?"

"Maybe sooner would be better than later for that vacation," I said.

His eyes, which had been moving smoothly from the door to the window, caught sharply like a fishes mouth on a hook.

He swallowed conspicuously, rearranged the covers over his ulcerated legs, and sat up a little straighter.

"Oh," he whispered. We both started crying.

He understood.