Almost 20 years ago four cancer patients were interviewed for the Voices from the Lived World of Illness video, which we produced at the Center for Communication in Medicine. Sitting side by side, the patients were asked for their suggestions about what would be helpful in educating doctors about the experience of patients.
Without hesitation Adrienne Barnes said, “Be sick. Make them sick. There’s nothing like it.”
Her blunt comment led George Lewis to say, “It’s like when I had a colonoscopy and the doctor said, “Now this isn’t going to hurt.” And I said to him, “Have you ever had one?” And he said, no.”George then asked, “Has anyone had bone marrow tests?”
He confided, “I’ve had five of them. And the first time I could be lied to. The second I fooled myself that it wasn’t so bad. It was the last three that was ten seconds of something that you can’t even describe.”
This prompted a discussion about how doctors often minimize pain associated with medical procedures.
Adrienne explained, “I had a liver biopsy and they said it’s just a little prick. Well, it was not. It was very painful. So, if you don’t know what it feels like, say I don’t know what it feels like. Patients have told me that it hurts like bloody hell.”
Pat Barr added, “I had an experience with an ER procedure that I had to have and was going to have repeatedly. Well, the first time it was so horrific for me that finally someone said, ‘Well, we could drug you first.’ It wasn’t bad anymore. You know, the idea of being able to say I want premeds or are there premeds or is this a good procedure to have premeds. So, that’s what it could be.”
With obvious frustration Adrienne noted, “Well, the other thing as a nurse, I know there is pain medication available. They don’t always offer it.”
These many years later it’s still disappointing to hear how pain may not be fully acknowledged or properly managed, especially for those in treatment for serious illnesses. I certainly understand concerns about addiction to narcotics but pain should not be dismissed. Yet, as George, Adrienne and Pat emphasized, patients must play a key role in educating healthcare providers about their experience with pain and its connection to unnecessary suffering. I believe that concerns about managing pain should be discussed sooner in the course of illness, when medical procedures may be necessary for determining an accurate diagnosis and appropriate treatment plan. These conversations should be noted in the medical chart and shared with other providers in the healthcare organization, not as a complaint but as a way of recognizing the patient’s lived experience. Any way that suffering can be minimized is humane care.
Mary Ann Carlson
Oh Celia, Having been my sister’s caregiver following chemo and radiation, I was crying inside when I read your blog. Fortunately her oncologist was knowledgeable about her extreme discomfort and did everything possible to mitigate the pain and suffering.
Thank you for the work you and Bernie do.
Stay Well, Love, Mary Ann
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