Inside the Patient Experience—Elizabeth’s Journey #4

Posted by Kristin Baird on May 6th, 2011 • No Comments »

This is the fourth entry in my in-depth interview with a patient undergoing cancer treatment.

Pain management is widely accepted as one of the most important elements in the patient experience. But one of the most important elements of pain management is helping the patient to know what to expect about pain. A trusting relationship between the patient and provider hinges on open, honest communication. Elizabeth  shared her insights on this subject.


I was drained yesterday, after the first chemo treatment. I tried to stay still in bed to avoid the burning that increased with any movement. It makes me nervous that I reacted so much during the first chemo treatment, and I worry about how I’ll handle future chemo treatments if they really get worse as you go along.  Fortunately, I have an appointment with my doctor next week and can ask him about this.

I’ve commented on this before, but I want to bring it up again; the fact is, medical professionals constantly minimize pain.  I should know by now that if I’m told a procedure may be “uncomfortable” it is likely to hurt like hell.  It feels manipulative to me – like trickery.  Is it that they think you’ll be better off psychologically if you don’t know the truth (like some kind of placebo effect)?  Are they trained to minimize?  I have to wonder about this because it happens so often.  I used to think that I was probably me, that maybe I was more sensitive than other people. Then I read a few web sites where people talked about their experience with stents.  One person after another talked about how painful stents are, and several commented that their doctors minimized this.  I can tell you that if this is a psychological strategy it doesn’t work. In fact it has the opposite effect on me and apparently on others as well.

The emotional charge I’m feeling about this now is because I was told that the chemo “might burn a little.”  And, as I said, it was much worse.

When I asked Elizabeth how these feelings affected her level of trust she said, “It destroys my trust. I feel like I’m constantly being misled when it comes to pain estimates. As I said, I wonder if health care professionals are taught to minimize as some sort of psychological ploy.”

This situation is a difficult one for caregivers. Although you want to manage expectations realistically, it is difficult to tell patients that they will experience pain. You wonder if it will just create more anxiety and thus make the experience even more difficult. I asked Elizabeth what would have made this situation better for her. She replied, “I just want the truth. If they would have just said, ‘This is going to be tough, but I have confidence that you can manage it. We’ll give you something to control the pain and we’ll be right here for you.’ That would have made it feel more honest and realistic. I don’t like feeling like I’ve been duped.”

The truth, no matter how difficult, is the best way to build patient trust.

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