Q: Now you believe that patients in your position should consider saying no?
A: I think that the whole way these things are structured should be changed, that there’s so much more that has to be told to the patient when the patient is compos mentis, and that the prep time for the surgeon has to be much longer than it is. Because this, after all, is not an emergency procedure, so it’s much more like a chronic condition than it is like an acute condition, but the way in which it’s treated is peremptorily, right? You’re given a peremptory discussion and they say, “Don’t worry about this, it’ll all be fine. I’m a great surgeon, I’ll take care of you.” So you back off. And all of that, it’s deep in the medical education, very, very deeply systemic.
Q: In your book you write that communication, or rather its lack, is a key source of patient frustration, but that health care professionals have a strong disinclination toward it. What did you mean by “pixie dust”?
A: The anxiety that the patient feels is not something that the practitioner or the provider is immune from. Cutting into somebody isn’t easy, you know, and the idea that you could cause infection and all kinds of pain and possibly death is something that you have to inure yourself against. So the pixie dust is the cloud of anxiety that affects everybody in the hospital in different ways, that I think the providers try to make themselves immune to. They harden themselves against it. And it’s a disincentive to communication, creating an aversion to dealing with the emotion of patients and families.
Q: You note that CT technicians did tell you about the infinitesimal chance you might die during the scan, but not about the much higher possibility you would…
A: S–t my pants?
Q: That must have been a horrible low point.
A: Yeah, but it’s not atypical, and it goes together with the pixie dust stuff—it’s what they see and what they ignore.
Q: How did all of this lead to the Patients’ Association of Canada?
A: What I did was get myself onto a hospital patient-centred committee. I got a bunch of other people who had had patient experiences to sit with me, and that was the beginning.
Q: What, realistically, can be changed?
A: There are three different levels where the system has to change. At the individual level, patients have to be made more capable of dealing with the system as individuals with their practitioners. I think that that’s really hard to do. I think that that requires changes in the education of practitioners, as well as helping people take on more responsibility for themselves. That’s tough, really tough. The middle level is designing services, and I think that patients can be more involved. There are examples of this in cancer care where families of kids who’ve had cancer are paid to come into the hospital and help families with new kids who have cancer, to give them a sense of what the system is like. The third level is at the policy-making level. Patient perspective is not part of the policy chain. Patients should be part of it.
Q: Do you see signs of that?
A: It’s beginning to happen. There are patients on boards of hospitals and health care organizations now. But the patients have to be trained up so that they’re not taken over by the system, and they have to have support. That’s why we need a patients’ organization that stands behind them and is a place where they can come to for resources and for help.
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