The recent Ebola outbreak has led me think about how America can truly be an exceptional place for health care. As evidenced by nurse Nina Pham of Dallas, Texas (recently declared Ebola-free), we "do" heroic care better than anyone. But let's say that you're seriously ill with an equally serious but less dramatic illness, e.g., you just had a heart attack. Then, things get strangely complicated because you're also expected to be your best (expert) advocate on what is likely one of the worst days of your life. Suddenly and while gravely ill, you -- the consumer of care -- are supposed to know just as much as a doctor -- the provider of care -- so that you can self-direct your own recovery.
Depending on your perspective, that's either Pollyannaish or delusional. Would you represent yourself in a lawsuit? Would you undergo an IRS audit without the help of an accountant? Assuming that the answer to both is "no," it's logical to question why simply being sick qualifies you to best advocate for your own recovery.
At this point, the typical riposte is that information technology and easy access to information is supposed to democratize self-advocacy. But in the real world, these bromides fall disastrously short of reality. Exhibit one: My parents, both techno-savvy professionals, had to hire a consultant to help them navigate the dreaded Medicare prescription donut hole. They are hardly alone in this struggle. Exhibit two comes via a study conducted by the Human Factors and Ergonomics Society (HFES) titled "Younger, College-Educated Consumers More Likely To Use Potentially Unreliable Online Health-Care Information." It established that smart, well-educated adults researching serious health issues with the intention of treating themselves had the tendency to ignore experts and facts in favor of anecdotal content written by the average individual. The greater the complexity, the less likely it was that the sample group would seek out medically substantiated content.
Technology and access to information do not magically confer gravely ill individuals with medical expertise. Moreover, a collective desire for self-directed care does not displace the requirement for expert, compassionate guidance made available to every patient -- whether requested or not. Simply put, seriously ill patients should be treated better than average consumers.
There is a role for technology, but even more fundamentally there is a need for medical experts and institutions to engage -- proactively and reliably -- in patients' recovery, thereby speeding recovery. For some, presumably the same people that choose to defend themselves, that smacks of the nanny state. Others will rightly complain that this kind of engagement is expensive and difficult, but that doesn't change the reality that it's both effective at improving health, and effective at reducing overall cost of care.
Life would be a dream if every consumer could foresee the unanticipated, make adequate preparation, and be ready to call all the shots the day after a serious health reversal. But that's fantasy, which is hardly the basis of a compassionate, cost-effective approach to better healthcare.