Unspoken Wishes

“In the quiet heart is hidden sorrow that the eye can’t see.” – Susan Evans McCloud (from “Lord, I Would Follow Thee“)

I learned an old piece of wisdom when I was in medical school: “When all else fails, talk to the patient.” The first day I heard this saying I laughed, appreciating its cynical and sardonic humor, but I did not foresee how much this simple maxim would one day help me.

About halfway through my medical internship I had to spend a month working on the nephrology service, taking care of patients with severe kidney diseases. Most of them were in the hospital due to some complication related to hemodialysis. At the start of the month I looked over the list of patients on the service, and one of these was an elderly woman who had a serious infection in her dialysis catheter. This infection was recurrent despite powerful antibiotics and multiple attempts to replace her catheter. This poor woman had a very long and complicated medical history, including a major stroke, and we were informed that she had severe dementia so that she could not meaningfully interact with people. It was pitiful to see her, lying in bed looking ill and unable to talk. Sometimes she would look at me as if she wanted to say something, but no words would come out of her mouth. Once she even grabbed my hand, but I couldn’t tell what she wanted and I didn’t have time to find out, so I had to just walk away.

My senior resident and I worked diligently to treat her infections, and after many days all of her blood cultures were clear. She was ready to receive a more permanent dialysis catheter, which was a procedure done in the Interventional Radiology department, and as soon as this was done she would be ready to leave the hospital. But that afternoon I received a phone call from Interventional Radiology informing me that she had refused the procedure.

Refused the procedure? Why would she do that? And how? Aside from her occasional imploring looks, she never seemed capable of communicating anything. I was the intern on the service, so it was my job to execute the team’s plan, but our plan had just fallen flat on its face. This news felt like a punch in the gut.

I went to find my senior resident. “What do you mean she refused?” he exclaimed. “She can’t refuse!” The patient was already being transported back to her room, so he ordered me to meet her there and send her back down to Interventional Radiology. This was easier said than done, as the patient had already forfeited her slot on the procedure schedule, but I dutifully walked to her room while stewing over what I was going to do when I got there. All of my days on the nephrology service were insanely busy; extra work was the last thing I needed.

When I entered the room the patient looked me in the eyes and said, “No!” I tried to speak, but she interrupted me with the same emphatic, “No!” This was the first time I had heard her speak, and she clearly meant what she said. What shocked me even more was my distinct impression that she also understood what I was saying. Almost in disbelief I asked, “Are you able to understand me?” She nodded yes, and her answer was unmistakable. I began to realize that this woman did not have dementia, but a language problem caused by her previous stroke. Damage to the posterior frontal lobe of the dominant hemisphere of the brain causes impairment in a person’s ability to form language but preserves their ability to understand language, a condition called expressive aphasia. Earlier in her hospital stay she had been too sick with bloodstream infections to put forth much effort to communicate, thus our mistaken impression that she was demented.

With this new understanding of my patient, I began to talk with her. She was still resistant, and fought with me until I was able to persuade her that I wanted to understand her and that I wasn’t going to do anything without her permission. “I’m not going to hurt you,” I promised. “I want to help you, and I need to understand what you want.” When she had calmed down I explained the situation: that she needed dialysis in order to live and that in order to get dialysis she needed a new dialysis catheter. Again she made it clear that she did not want the procedure. I said, “You will die without dialysis.” She nodded yes. Satisfied that she understood the situation, I asked, “Are you okay with that? Are you ready to die?” With perfect eye contact she again nodded affirmative.

I left the room and called my senior resident, who said, “She’s demented. She doesn’t know what she wants. Give her Haldol and send her back down to Interventional Radiology.” (Haldol is an antipsychotic medication which is very sedating, and has often been used to calm agitated and confused patients).

“But I don’t think she’s demented,” I countered. “I think she has expressive aphasia. I think she can understand everything I say.” After a pause I added, “Forcing this procedure against her will would be inhumane.” The patient clearly and consistently expressed her wishes to me, and later to my attending physician, and to the Palliative Medicine consult team. She never did have that catheter placed. We respected her wishes, and let her go home to die in peace.

The day I discovered my patient’s aphasia was the day I became a hero in her eyes, but I felt disappointed in myself. I wish that I had tried harder to communicate with her before that day. How many times had I walked out of her room while she was trying to tell me something, and I had not known how to listen? Those memories now stung me.

But my consolation came the next day, a few minutes before she left the hospital. I came to her room with the discharge instructions, and when she saw me she smiled. Then she spoke the only sentence I ever heard her say: “I love you.”

Alan B. Sanderson, MD is a member of The Church of Jesus Christ of Latter-day Saints and is a practicing neurologist.

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