Social Conflict 3: Timely Treatment and Confident Consent
Synopsis: All women with ovarian cancer deserve timely treatment. But because of the urgency of a cancer diagnosis, many women feel rushed into treatment, often feeling as if they have not even fully accepted the fact of being a cancer patient before treatment begins. Though their providers may have met the legal definition of informed consent, many women feel as if they were not in control of the initial decisions in their course of treatment.
Patient voices: “I wish I could have had options from the time I was told about my diagnosis. Instead, it was like, you’re going to do this, you’re going to do that, we’re going to start chemo and this is how you are going to live. … But they had been like you do chemo, you follow this regimen, or you will be dead — and I did not appreciate that. I mean, it’s your first time having cancer. How do you know what questions to ask? You’re terrified.”
“The only time I felt like I really made the decision was with my third recurrence of cancer. My oncologist started giving me a list of chemos and I went, wait a minute, I’m supposed to pick? She’s like, well, there’s no set protocol for your situation. I decided to contact the Clearity Foundation, to send my tissue to them to find out what chemo I should get. I got a lot of resistance to that — she said, ‘How can you leave here not knowing what chemo you’re going to get? Most women would be panicked.’ But that was the one time I felt like I had been the one who made the decision. I figured there would be a lot of decisions coming.”
Group analysis: Our oncology nurses discussion group used the conceptual model of an “acceptance clock” to explain this conflict. They said that with a strong, empathetic care team, this “clock” can be started well before the factual confirmation of a diagnosis, but in fact it usually starts after an initial surgery. They recommended the development of resources to start the “clock” sooner. The group of ovarian cancer advocates and leaders we convened also affirmed this idea, arguing for the creation of resources that help patients and their network create conditions of not just of “informed consent” (the minimum legal standard) but “confident consent” (the set of conditions are which patients make decisions in the healthiest way possible).
Design principle: Any new resource for ovarian cancer must take the “acceptance clock” into account, respecting that women will come to terms with their disease on their own schedule, not the health care system’s. It must also enshrine “confident consent” as something every patient deserves.