It was June 1983, and our 57-year-old mother looked pregnant. Although she had been watching her "figure" for years, she was gaining weight. She was also "spotting," though she hadn't had a period in years. Eventually, she was referred to a doctor who ordered tests -- and found Stage 4 ovarian cancer. She went through surgery and chemotherapy. Though we were all frightened, we were repeatedly reassured she would be "okay," which she, and we, believed. She died on Jan. 5, 1985.
In 1983, the "patient voice" was a passive voice and women, especially those of our mother's generation, were encouraged to do as they were told -- by a male medical establishment. She went where her doctor was on staff -- where she was told to go. Her chemotherapy and surgery were, literally, what the doctor ordered. Neither she nor we as her family had any way of knowing if it was the "best" or "latest" kind of care.
Today there is a significant movement toward shared medical decision making. Patients are often asked (like it or not) to be partners in the choices related to their own care. Even those patients who do wish to make those choices are generally basing them on their own inexpert research and frequently misleading medical advertising.
If the Internet and social media had existed back in 1983, seeking medical information on the Internet probably would have been our first step. According to the Pew Internet and American Life Project, 113 million Americans a year search online for answers to their health questions; however, three-fourths rarely, if ever, check the sources of the material they find. We can certainly get information, but the information is unfiltered, unfettered and often of questionable value. The Internet has made it easier than ever before for charlatans and quacks to spread fear and misinformation. Mark Twain wrote: "Beware of health books. You might die of a misprint." The same can now be said of the Web.
The accuracy of medical information varies dramatically based on its source. There is a large gap from government websites and websites of national organizations, which have the highest level of accuracy (80.9 percent and 72.5 percent in one study, respectively) to those of product review retail websites which have the lowest level of medical accuracy (8.5 percent).
All this begs the question: Is unchecked knowledge really power? The Internet is a library without a librarian. It is agnostic to truth, accuracy, and spelling. We could have looked for information to try to help our mom, but how helpful, truly, would it have been? Might we have steered her in the wrong direction by "playing doctor"?
Not only might we find questionable information on our own, hospitals now aggressively market their cancer treatment programs, especially those for women, through strategic communications based on the same techniques used to sell any other product or service. Ads for medicines are required to support any claims with substantial evidence from rigorous clinical studies. Ad claims made by medical centers about their care, even if they are anecdotal and unrepresentative, are not similarly regulated. It can be nearly impossible to sort out commercial from scientific information. Is the hospital beautiful or does it produces great results or does it simply have a superior marketing department?
Quality and outcomes are not what "sells" on the Internet. In fact, when searching "abdominal pain," on the Internet, which our mother almost certainly would have done, the first boxed ad is for Cancer Treatment Centers of America, with another for a laser treatment institute and the third for a gastroenterology practice. Placing information from reputable medical sources in close proximity with ads for other services seems to lend the patina of respectability and success to those advertisements. As it happens, Cancer Treatment Centers of America, nationally advertised on television as being especially well-suited for late stage cancer treatment, is also cited on Quackwatch.com -- a website that exposes what it considers to be questionable medical practices.
Cancer Treatment Centers of America proudly advertises it has been recognized for Patient Experience by WomenCertified. But, when it comes to cancer care, what does a women-friendly patient experience mean -- and is it important? This honor is not recognizing medical skill or survival rates. It's marketing consumer satisfaction. It would be very surprising if there were a similar satisfaction-only measure for men.
Cancer treatment for women has become another example of a "product" that can be "marketed" to women based not on a presentation of scientific data, but on "softer" points such as "concierge service" and even hospital landscaping. Women receiving cancer treatment are being "sold" on the necessity of services such as massage, acupuncture, makeup classes, and wig styling classes. When searching "men's cancer treatment," there is no corresponding emphasis or demand.
Today, a woman diagnosed with cancer faces a variety of influences on her care, which are very different from those faced by women even in the recent past. Our mother faced her cancer with only her family, friends and physician to guide her (and her family was a very limited guide). Today, a cursory Google search for "ovarian cancer support groups" delivers 2,270,000 results in 0.16 seconds. Though this would seem to be a bounty of care and support, it is certainly a mixed bag.
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