Melissa Thompson on Preparing Patients for the Reality of Cancer Treatment

Hospitals don't always adequately prepare patients for the reality of cancer treatment and all the ways it might affect someone's life, explained Melissa Thompson, MBA, healthcare strategist, patient, and self-advocate.

As you went through treatment for cancer, what did your care team do right and what could have been done differently?
When I was diagnosed I realized, well I didn't realize this until later, when one is diagnosed, it's really a trauamatic sitaution. You don't have the freedom of time or luxury of clear mind to make decisions, and you're prescribed into a program very quickly. And I got lucky. I live near an urban center where there are excellent hospitals, but I know a lot of people don't get that lucky. So I think having enough educators around a patient is crucial, because I didn't have enough time to research my options. My options were given to me and I was lucky that those options were valuable and efficient and effective. But some people aren't that lucky. So to be in a great hospital system is something I highly valued.

We've been talking about financial toxicity today [at the PAN Foundation Cost-Sharing Roundtable], and costs and out-of-pocket costs, and cancer is obviously a high-cost disease. Hospitals, I don't know if they place enough value on the high barrier that out-of-pocket costs have on patients and a patient's care and adherence medications. And so if I was to redesign my care, or any patient's care, more value and more conversations would be had earlier on about how much this would affect my life, could possbly affect my life. Because when I walked into my hospital on the first day for my first appointment with the surgeon, I would have had no idea that I would an inpatient for 11 weeks, that I would not be able to work, that I couldn't hold my daughter for 8 weeks after each surgery, of which I had 2. And those nuances in somebody my age, in particular where I should be in the prime of my career and working, those things took a large toll on me and continue to.

I hope to be able to make a change for the cohort of people who will unfortunately go thorugh high-cost disease and chronic diseases after me. I think by getting a better idea of one's out-of-pocket costs in the beginning, you'll have a better idea of how to plan for it.
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