The Curse of Knowledge Can Lead to Unnecessary Suffering

"What is this woman doing on my schedule?" I asked my office staff. I had been looking through the medical records of people I would see in the office to prepare myself, and I found one I did not like. It was the chart for an elderly woman with metastatic breast cancer whose reason for seeing me was "PEG tube request."  

Now, I am a big fan of the percutaneous endoscopic gastrostomy (PEG) tube as a means of providing reliable nutrition to people who are unable to eat. There are many good reasons to give people feeding tubes like this. They are great for patients who suffer a temporary inability to swallow safely or who have difficulty eating but are expected to live like that for a long time. In those settings, a feeding tube can improve survival and quality of life.

Where I object to the use of the PEG is at the end of life. When a patient is dying, they don't need a feeding tube. In that setting, any feeding tube is not going to improve survival or quality of life. However, other physicians do refer me patients for a feeding tube in this setting as a 'Hail Mary' that better nutrition will produce a miracle cure. It won't. What it might do is add an unnecessary procedure and unnecessary risk that could shorten the patient's life. In this setting, placing a feeding tube is a procedure with potential danger and no upside.

As a general rule of thumb, I ask myself if the patient will still be alive six weeks after I place the feeding tube. If the answer is yes, then I'm in favor of doing it. If the answer is no, then I think the family needs to have a more realistic expectation of what the future holds. In this case, it was the latter.

When I entered the examination room, the patient reclined in a nursing home wheelchair covered by a heavy blanket that looked at risk to suffocate her frail form. Her skin was sallow, cheeks sunken, body wasted and eyes vacant. The only indication she was alive was the rasping breath sounds she made as she laboriously drew oxygen from a green cylinder. One glance was all I needed to confirm my assessment that this woman would not be alive in six weeks.

I turned my attention to the woman sitting in the chair next to the patient. That woman turned out to be the patient's daughter. We exchanged a few pleasantries, and then I confirmed what I had read in the chart. I asked the daughter how I could help.  

“I think my Mom needs a feeding tube,” she said.

“Why do you think that will help?” I asked.

"Well…she keeps getting pneumonia, and one nurse said it might be because she can't swallow, and a feeding tube would help."

I had looked at the report from the patient's most recent chest X-ray. The reason this patient kept getting pneumonia was that her lungs were full of cancer, leading to blockage of the air passage. Pneumonia was an expected problem in this setting. Pneumonia is how I expected this patient to die. A feeding tube was not going to change that.  

I sensed a disconnect between what I was thinking and where the daughter was coming from. So I decided to ask another question to clarify.

“How did you expect your mother to die?” I asked.

"Well," she paused, unsure how to answer, "from the cancer."

“And how did you think that would happen?” I pressed.

After a moment of thought, she replied, "I'm not sure, but I don't want to see her keep getting pneumonia. It is so hard on her, and she ends up weaker after each trip to the hospital."

I let that thought hang for a moment, and then I gently pointed out, "Pneumonia is how people with cancer die."

I waited a moment for that to sink in and then followed with, "The pneumonia is not a problem; it is the natural end to this process."

Before the widespread use of antibiotics, doctors referred to pneumonia as "the old man's friend." This was the euphemistic way of saying that pneumonia came like an old friend to take the sick and elderly away from their suffering. In the "old days," they understood that pneumonia was a natural end to life. In many cases, a welcome end. Today, we seem to see the death of patients as a failure of medicine to save them. As if we would all live forever if doctors just got it right. But death is a natural and inevitable part of life, and pneumonia remains one of death's most trusted allies.

The tears were coming now. I handed the daughter a box of tissue and gave her time.

“I… I didn’t know that,” she said.

I gave her my best sad and apologetic look, but on the inside, I was marveling at how it is possible that with all this patient's doctor visits and hospitalization, no one had told them this already. It seemed such a fundamental piece of knowledge. Surely every doctor they had recently encountered knew it, but no one had thought to explain it to the patient or her daughter.

That can be a problem with being a highly trained professional. We know so much, and we tend to assume others grasp things that seem basic to us. This tendency to think that others know things that we know is called the curse of knowledge. It is a common cognitive bias that can lead to misunderstanding, and in this case, unnecessary suffering for this patient and her family.  

This experience reminds me that we need to explain things to patients that may seem obvious to us. When discussions are not going well, our first step needs to be to back up and check the patient's assumptions to make sure they match our own. Simple, open questions like, "What do you think?" or "What do you know about ______?" or "Have you thought about what you would like to happen?" can help us find a common starting point for discussion. We need to remember that it is our responsibility to meet the patient where they are and bring them to our level of understanding. To meet them where they are, we need to ask them questions and find out where that is. Only after we meet them, can we take them where they need to go.

I never discussed a feeding tube with this patient or her daughter. Once I met the daughter where she was in her understanding and guided her to what she needed to understand, the discussion moved to issues of comfort care and what to do the next time pneumonia set in. The daughter thanked me for my time as she wheeled her mother out of my office.

I did not see either of them again. The patient did not return to the hospital. The next contact I received was a card from the daughter informing me that her mother had passed away peacefully in hospice and thanking me for all I had done. It seemed to me I had done very little, but what little I did made a big difference in the life and death of these two women.

Charles Black, MD, has two decades in practice as a community-based general surgeon caring for neonate, nonagenarians, and everyone in between. He lives in the mountains of Colorado where his primary avocation is photography and where he can also be found hiking, skiing, trail running, and generally enjoying nature. Dr. Black is a 2019-2020 Doximity Fellow.

Illustration by April Brust

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