Sometimes It’s Better Not to Know

This post was originally published on this site

“I don’t know if I’m looking forward to being 98.”

My 97-year-old patient revealed this to me during our first meeting in my clinic examination room. He had just moved to an assisted living facility in Cleveland to be near his son and daughter-in-law, who also sat in the room. They were quiet as they watched us interact.

“What do you mean?” I asked.

He rested both forearms on the high arms of his wheelchair, which caused his shoulders to hunch and gave the impression that he was about to spring into action. He spoke deliberately, choosing his words carefully. His eyes were rheumy but sharply focused, commanding my attention. I got the impression he was used to being in charge.

“I don’t want to end up… you know, blotto,” he said, quickly pantomiming a person slouched to one side of his chair, mouth open. His son and daughter-in-law glanced at each other and then at me as they arched their eyebrows in surprise.

“Why do you think that might happen?” I asked.

“Because of my medical condition, or whatever you’re going to recommend I treat it with,” he answered, matter-of-factly.

He had abnormal blood counts, but no established diagnosis. He was anemic, requiring a blood transfusion every two months, just often enough to be a nuisance for anybody. His platelets were low, but not low enough to put him at risk for bleeding or to require platelet transfusions. And his white blood cell count was decreased, though again, not enough to render him prone to infections.

I had already pulled up his labs on the computer and had walked him through the results. Given his age and these laboratory values, it seemed likely that he had a condition called myelodysplastic syndromes, a group of cancers in which the bone marrow fails to make enough healthy blood cells.

The only way to be sure of the diagnosis was to perform a bone marrow biopsy. For that, we would have to stick a needle into the flat part of his pelvis, just below his spine, and remove a sample of marrow from deep within the bone, to be analyzed by a pathologist.

Bone marrow biopsies have been used to evaluate diseases of the blood for over a century. The contemporary biopsy needle, invented by the Iranian hematologist Dr. Khosrow Jamshidi in 1973, is almost comically long, long enough to reach the bone that is sometimes buried deep beneath the skin. It looks like a prop for a movie mad scientist. A few years ago, I probably forfeited any “parent of the year aspirations I may have had by pulling one out at my son’s elementary school during a lesson to his classmates on how blood was made. Not surprisingly, they recoiled at the sight of it.

Patients can have the same reaction. An alternative to the needle is a drill that was shown in one study to be just as effective at obtaining bone marrow specimens. Though some patients have told me they feel less pain with the drill, others say it gives them even more anxiety, telling me it evokes the sounds they normally hear emanating from the dentist’s office.

I wondered whether I really needed to make my patient go through this procedure just to establish his diagnosis. His blood counts had been low for some time, implying a chronic condition that didn’t appear to be worsening anytime soon. Even if I did diagnose a bone marrow cancer such as myelodysplastic syndromes, I wouldn’t treat it, as the therapies I might suggest would necessitate even more frequent trips to the doctor’s office for him and wouldn’t fix the underlying problem.

More important, he had already told me that he didn’t want to be incapacitated by his disease, or by its treatment. He valued his quality of life. I worried that if we went down this path, I might make that worse.

“To really figure out what’s going on with your blood counts, we would have to put you through a bone marrow biopsy…” I started to say. He waved his hand impatiently, cutting me off.

“I don’t want it,” he said. “I don’t want to go through it.”

I met his gaze for a few seconds and nodded in agreement, as did his son.

“I’m O.K. not knowing if you’re O.K. not knowing,” I told him. This time he nodded.

“See you back in a month,” he replied, finishing the doctor visit. He had put an end to our encounter. On his terms.