The New York Times, as part of its series profiling the top causes of death in the U.S., last weekend featured cancer. The article makes the point that cancer care is not standardized and that if one doctor says you have six months to live, the next may give you two years and you may surprise them all by lasting five years.
I particularly noticed this quote from Karen Pasqualetto, a cancer patient near Seattle:
“It’s patchwork, and frustrating that there’s not one person taking
care of me who I can look to as my champion.... I don’t
feel I have a doctor who is looking out for my care. My oncologist is
terrific, but he’s an oncologist. The surgeon seems terrific, but I
found him through my own diligence. I have no confidence in the system.”
Pasqualetto is a smart and savvy consumer, able to research her own case and seek out alternate treatment when her first oncologist seemed insufficiently willing to fight the disease. She had just given birth when the cancer was discovered, and has been using all the tools at her disposal to try to extend the time she has with daughter Isabel. She credits her new medical team with giving her precious months of life that have let her watch Isabel take her first steps.
More than ever, it seems, patients are responsible for being their own best advocates, often at times when they're also sick or scared or in pain. Those of us who have Internet and critical thinking skills, who can sort through the mess of spam and misinformation online, have an advantage, and frequently find ourselves becoming resources in our own communities. (I'm sure I'm not the only one who's helped an older relative choose a Medicare prescription plan!)
That's why we're focusing on health "wisdom" -- the intelligence of ordinary people who deal with health care issues and systems every day. We can't change the system that leaves patients feeling like they don't have a "champion," as Pasqualetto puts it. What we can do is help them help themselves.
