Know or No?

I would like to tell you about three new patients I saw back-to-back-to-back last week. All three had the same diagnosis. Each of them also had the same answer to one of my questions.

Patient #1, Mrs. B: A sixty-five-year-old woman with stage four adenocarcinoma of the colon diagnosed from an omental biopsy in late 2022. She is retired, having had a career in finance. She now spends much of her time taking care of her preschool-aged granddaughter. She has cancer growing in her belly cavity and both lungs. She is otherwise well without medical issues.

Patient #2, Mr. D: A seventy-year-old man with stage four adenocarcinoma of the rectum diagnosed on colonoscopy biopsy in late 2022. He has a remote history of prostate cancer for which he received radiation and hormonal treatment but is otherwise well. He is retired, has a roommate, and says he mostly putters around during the day. His liver is packed with spots of cancer spread.

Patient #3, Mrs. A: A sixty-one-year-old woman with stage four adenocarcinoma of the colon. Her cancer is growing in her lungs, liver, and bones. She is on medical leave from her job at her community hospital a few hours away from our tertiary cancer centre. Of interest, she is the cousin of another patient of mine who is about the same age, and who I am treating for the same disease.

After I learned a bit about these people, I discussed treatment options with them. Their tumours had different characteristics allowing for slightly different preferred therapy. We then discussed side effects. Finally, we talked about prognosis.

In each case, I said these words out loud for all in the room to hear: “Your cancer is incurable”. This is an indisputable fact in 2023 for all three of these patients. Two of the three knew their cancer was incurable before their appointment with me. The terminal diagnosis was a surprise for one of them. I think this is an important piece of information to share during first meetings. It is important for me to know I have said these words out loud to my patients. I never want to assume my patients know this. I must be confident they know what the goals of any treatment are. Are we trying to improve cure or are we trying to control the cancer and extend life? It is my usual practice to be as clear as possible with my patients from the beginning of our relationship. I need to ensure my patients won’t be surprised down the line.

Mrs. B, Mr. D, and Mrs. A acknowledged this information – one with an “okay”, one with “I didn’t know that”, one without words using eye contact to tell me they heard what I said.

I started the next part of our conversation asking if they wanted to know how much time they might have left. I made it clear I don’t know for sure how long they have, that no doctor has a crystal ball that tells us how long a patient has, but I could share averages based on thousands of people that have come before them with their type of cancer. Averages are usually derived from clinical trial data. I told them the average I can share is a middle ground – half of patients do better while half do worse.

When I asked each of these people if they wanted to know, on average, what their expected length of life was, all three had the same answer for me:

“No.”

“No, I don’t want to know.”

 “No, I don’t think I want to know that number.”

By the third patient, my mind was blown. All three people said no to knowing on that day. I tried to think of another day in my career when I saw three new patients who all said no. I couldn’t.

Since then, my mind has wandered many times to thinking about what makes someone want to know, and what makes someone say no. I have not yet discovered what sways someone one way or the other in their decision on this. If I had to take a guess, I might say over two-thirds of my patients want to know. This imbalance is, in and of itself, curious. More people want to know. Why is that?

Patients remind me of things every day. On that clinic day, Mrs. B, Mr. D, and Mrs. A reminded me assumptions are dangerous. I should never assume me having information on patient survival rates and timelines means a patient should have, or wants, that information too. Some people don’t want all the information I have for them. This is their choice. Knowing comes with a price for some. Knowledge can be a heavy burden many do not want or can’t handle.

For those patients of mine who don’t want this burden, I suppose it is part of my job to bear it for them. I will hold that information tightly if it will protect them, and with enough gentleness to help them see when their time starts to slip away.

Thank you to Mrs. B, Mr. D, and Mrs. A for reminding me caring for patients requires respecting their knowledge boundaries.

Author Notes:

I’m not going to get asked the same question if I am ever faced with an incurable cancer. Though this might be obvious, I’ve never thought about this fact before I decided to write about Mrs. B, Mr. D, and Mrs. A.

I will already know the answer. I will know my average length of life without someone telling me. I won’t get to decide for myself if I want to hold this knowledge . . . a hazard of my profession.

I told my son, his girlfriend, and my daughter, all teenagers, about my clinic experience while we were all home this week. I asked them the same question: Yes or no, if you knew you were going to die, would you want to know a ballpark of how much time you had left? All three of them answered yes. I asked them why. They had a few answers for me: “so I can plan for my death”, “to make sure I was able to do everything I want to do”, “so I could spend time with the people that matter to me”.

I challenged them a little more saying, “Okay, but you already know your cancer is not curable. Do you really need to know a timeline?” They all said “yes” again.

I asked, “Why?”

“To know how much time I have to pack it all in,” was the clearest answer they could give. “I don’t know, I just would want to know,” was another very interesting response. In trying to tease a more precise answer out I think we landed on knowing would, for them, help prioritize what they wanted to for sure do and who to spend the most time with.

They would be living like they were dying every day. Knowing they are another day closer to the end might make their experiences bigger and brighter. But I think that can be true without knowing an average for many people.

At the end of the day, perhaps it just comes down to preference. If you know you are going to die from a cancer, does it matter if it’s in eighteen months or two years? It does to some people; it doesn’t to others. I wish I knew what it was inside a heart, mind, or soul that makes this decision. But then again, maybe this is one of those mysteries better left unsolved.

I am curious to know, reader, would you want to know, or would you say “no” to the question I have to ask my patients? Whatever your answer, what is the reason behind your response? What is your why?