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Hurt by Medicine: Patients Talk

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Hurt by Medicine: Patients Talk

By Tom A. Augello, CRICO

Related to: Communication, Diagnosis, Disclosure + Apology, Emergency Medicine, Primary Care, Informed Consent, Nursing, Obstetrics, Other Specialties, Surgery


Commentators

  • Tom Delbanco, MD; Beth Israel Deaconess Medical Center; Boston, MA

Transcript

[male voice] “The institution that I depended on failed me, and in my opinion, failed our family.”

Is there a voice missing in discussions about safer health care? If so much of patient safety is all about systems, then what about people?

[room noise] Dr. Thomas Delbanco of Beth Israel Deaconess Medical Center and Harvard Medical School in Boston has blazed a trail in primary care and patient-centered care for more than three decades. He helped found The Picker Institute, which pioneered the surveying of patients to measure the quality of a patient’s clinical care experience, not just satisfaction. Dr. Delbanco brought some patients with him to the patient safety conference. The patients told their stories through a film that he is developing with conference co-sponsor CRICO.

“I want to give you some sense of how we might sort out the experience of patients who’ve had things go wrong for them. And then I am really going to invite you, to what I consider an open rehearsal of a work in progress where patients and their families will talk to us. Thirteen patients out of about 30 whom we have interviewed now and, many more in my practice who have given me some insight.”

[child voice from video] “I was very scared, because I knew that any second I could stop breathing, and I could die.”

[female voice] “I didn’t know how to react. I felt anxious; I felt scared, I felt lonesome, lonely.”

[next female voice] “I was confused, I was angry, I was stunned…”

[next female voice] “I felt helpless; I felt like I was fighting against these people, where we could have worked together.”

Through these videotaped in-depth interviews with patients and families, Dr. Delbanco reported some emerging themes.

“The first thing they feel is a lot of emotion, and they feel that throughout all the dimensions of what we talk about. One of the emotions that we touch on in the film but is very prominent, is guilt, and for me that was to some degree a new insight. We feel guilty when things go wrong. We feel awful. We all want to fix it, but the guilt on the patient, and particularly the patient family side is something to be reckoned with, and at least for me that was a new insight.”

Other themes from patients and family members talking about being harmed by medical error include: fear of retribution for complaining, the need for acknowledgement of the error and apology, and the link between honesty, openness, sharing information, and trust. Patients reported that a lack of information and contact from their doctors undermined recovery.

[female voice] “Who’s here for me? Who’s here for my husband? Maybe they’re talking about it and maybe they’re worried, but why aren’t they talking to us?”

[next female voice] “It was like it never happened; it was like it never happened.”

[next female voice] “One doctor told me, I had a 50% chance of living. That scared me…and then he walked away.”

[male voice] “It was really the lack of response, the feeling of isolation, dependency and realization that I was being penalized in terms of my medical care because I had experienced a medical error for which they were responsible.”

Dr. Delbanco suggested that medicine can use these insights to understand how to provide better care to a patient, after medical error.

“When you go to people, as we have—I viewed it as kind of a rolling focus group—another very striking insight that we’ve gained from this, is the sense of isolation that patients feel, when something has happened to them. Now, it’s conventional wisdom for us, that when patients have cancer, or are very sick or are dying, we health professionals have to work very hard not to run too fast past their rooms; Often we do. And patients report very often feeling isolated toward the end of their life or when terribly sick. But, what I had not realized until my patients began telling me, and the patients in the film began telling me that, is how isolated patients who’ve been harmed or have had bad things happen to them, feel. I would urge you to look at that seriously as we go along.”

On the videotape, patients and their families shared more insights into what they valued after an adverse event.

[male voice] “Some measure of action to say, ‘and here’s what we’re going to try to do to make sure it never happens again to you or to anyone else,’ would have been wonderful.”

[female voice] “I wanted to sue the hospital at that time. Not because I wanted the money. It’s just that I wanted them to be aware of the trauma that they had put me through.”

[next female voice] “I don’t blame this nurse, I know she didn’t mean to hurt my husband, and I know that it was very traumatic for her to have done it. But the three of us shared an experience that isn’t over until the three of us can sit down and kind of relive part of it and say what we need to say to each other. I’d like to say to her, we don’t blame you. We understand. We forgive you. I’d like her to say, I am sorry for what I did. I know it caused you suffering.”

[next female voice] Inevitably, caregivers protect their hearts, and sometimes, opening up their hearts helps a patient a lot.


March 1, 2006
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