Social Conflict 2: Diagnosis
Synopsis: All women with ovarian cancer deserve a reliable, timely diagnosis. But the disease is also difficult to detect. This difficulty is compounded by inadequacies in the system of care, which may delay diagnosis or cause women to feel as if no one will ever tell them what is wrong with them. After diagnosis, many women reflect upon their experience and say they felt as if they needed to “fight” for a proper diagnosis.
Patient voices: “I think you need perseverance. If you went to one type of doctor, try going to another type of doctor, because hopefully somewhere along the line, someone will see something or perform a test or something that would indicate that there is something wrong. Part of the problem is complacency. There’s more to it than just missing the diagnosis.”
“I think a lot of people just put so much faith in doctors and say, ‘Oh, well. I already said something, so, you know, it must be OK.’ But I don't think that's good enough. I think that you have to listen to your body, and I think that you have to follow your gut, and get the answers you need, and I think that's really important, because -- especially with the signs of ovarian cancer, because they're so subtle. … I think that's OK, if you research and talk to people, and go for consults, as long as, again, you are your best advocate, and you try every avenue there is.”
Group analysis: Our discussion groups highlighted the hopelessness and confusion that women experience in the diagnosis period. Patients and nurses agreed that a critical difference in patient outcomes is whether the patient, her support network, and her medical team can come together to create a spirit of hope in which women absorb information and make decisions. Clinicians and patients confirmed that they can tell the difference between situations where this hope has been created and where it has not. Experienced ovarian cancer advocates suggested the develop of model “scripts” that lead patients, supporters, and the care team toward this outcome.
Design principle: Any new resource for ovarian cancer must be grounded in the kind of hope that has led to the most successful patient outcomes. Hope is not blithe optimism or a pleasant feeling, but a tangible set of conditions that anyone can perceive and that all patients deserve. Any new resource must treat hope as a “mission critical” condition.