What doctors tell patients does not always land. Sometimes that’s okay and sometimes it isn’t.
Twenty years ago today, I went to the operating room for bilateral groin hernia repair. This is not uncommon. Around 25% of men and 2% of women will experience something similar, and hundreds of thousands of surgical repairs occur each year to correct these problems.
My surgery occurred a few years before I started medical school, but one thing in particular stayed with me: the way my doctor described how I’d feel. The whole thing had been billed to me as “no big deal,” but I was a little wary. I asked the surgeon what to expect and whether I would feel pain after the operation.
The downplaying was real. They would do the surgery with fiberoptic cameras. They’d put some mesh in there to hold everything in place, and that would be it. My scars would be like grains of rice. I’d go home the same day as the surgery with some pain killers and recover over a few days. To my recollection, here’s what my surgeon said to me: “Yeah, it’ll feel kind of like someone punched you in the stomach.”
That didn’t sound too bad, I thought. I’d endured some reasonably hard hits to the abdomen as a boy—be it from rough housing with other kids or playing sports. I could handle that.
I had the surgery. I woke up. My parents drove me home. I slept a lot. But when I finally really woke up, the pain was substantial. If I didn’t move, it was basically fine. If I so much as laughed or even took a deep breath, it felt like—well, like someone was punching me in the stomach.
The pain was far worse than I’d anticipated. For a second, I felt indignant. “She lied to me!” I thought, remembering my surgeon’s prediction about my pain. “She said it would feel like someone punched me in the stomach.”
That’s when I realized that she had not lied to me at all. She had told me exactly what it would feel like! It felt like someone punched me in the stomach. Except for one thing I had not thought of. It felt like someone punched me in the stomach non-stop, over-and-over, continuously for a couple of days.
So, she had technically told me the truth, and was not far off in terms of the qualitative feeling. (It really did feel like getting socked in the belly). But I had not thought about the fact that the pain would not be like someone hitting me just once. I had selectively heard what she said.
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In hindsight, it makes total sense. If she had meant that the post-operative course would feel like getting hit once, she’d have said something like, “It will hurt for a few minutes when you wake up.” But that’s not what she said. My brain simply did not want to ponder the fact that things would be bad for a couple of days.
I’ve noticed this happens a lot in medicine. Clinicians often tell patients the “truth.” But we also don’t prod to really make sure that patients know the whole truth. If my surgeon had doubled down to make sure I completely understood what she really meant—that I’d feel like I was getting beat up for 48 hours straight—what would that have achieved? Not much, other than to have scared me. I needed the operation. And she needed to tell me it would hurt. She needed me to know that I could not work for a few days, nor do any heavy lifting for a week or two (and she told me all of that too). But she didn’t need me to verbalize to her that I truly computed that this was really going to suck for a few days.
Of course, there are many, many examples where a fuller and more comprehensive setting of expectations (i.e., giving patients the whole unabridged truth) is absolutely necessary. Chemotherapy is a good example of this. When patients are weighing their options, phrases like, “You can expect to feel nausea and fatigue” do not really encapsulate the misery that they’re likely going to experience as a result of what amounts to controlled doses of poison. So, I often think we do our patients a disservice by downplaying the expected side effects of our treatments and interventions. I’m careful with that in my own practice now.
Twenty years after my surgery (and as a doctor myself now), I’m not mad at my surgeon for “artfully omitting” the scope of the short-term pain I was in for. I think she read me right and told me what I needed to hear to proceed. But every situation is different. When I am at work, I try to remember this, and give my patients my honest appraisal of what they can expect. Mostly, I try to give them a range of reasonable possibilities. I don’t want them to feel unwarned, nor do I want them to feel undue fear. Getting it right is never easy, but I think my experience as a patient helps me in this regard.
Been there, done that - hernias, chemo, tooth implants, etc. I've learned to simply expect pain to be much more severe than suggested: "discomfort" = "pain"; "pain" = "really bad pain". Your approach is a good one, still not widely followed.
Dr. Faust & JL & Richard K,
I agree completely and suggest this additional advice. Do some research aside from your attending physician so you will not be surprised and angry. When I was planning to have a CABG5, I asked some friends how they felt after the surgery and how long was their rehab, then I filtered the responses into my own expectations.
I’m a groaner, and I believe that any pain is going to kill me, so I assumed correctly that this surgery was going to be extremely painful and the recovery would be too. But, my cardiologist and surgeon were honest about what to expect, and they told me that if I chose not to have the surgery I needed to “get my affairs in order because it was their opinion that I had postponed the inevitable and long as possible.”
I had the surgery at MGB. The surgeon did a perfect job. He had been doing the operation for twenty years. The surgery and my recovery at the Shapiro Cardiovascular Center intensive care facility was first rate, and the at home rehab was long, painful and required twice as long as I had been told it would take. But, I knew what to expect from others who have had by-pass surgery. It was a painful - very painful - both recovery and rehab, but, I’m alive and I thank the MGB docs for that everyday.