Here’s a wonderful idea: patients and providers working together in shared decision-making, accepting and trusting each other’s input. Isn’t that the goal our health care system should strive for? Not so fast.
The latest survey[*] from Altarum’s Center for Consumer Choice in Health Care (CCCHC) showed something interesting—and a little worrisome. Respondents who are most likely to act like consumers in health care (shop for care, take a leading role in decisions) were generally less trusting of the motives and actions of their providers than those who took a less active role.
Consumers who had doubts about their doctors (felt that providers didn’t have their bests interests in mind, didn’t respect their time and budget, or based treatment decisions on financial motives) were more apt take actions indicating they are “engaged” in their care.
The implication is sobering. Perhaps engagement isn’t about getting patients and doctors on the same team. What if patients actually need to be a little LESS cooperative?
Anyone familiar with trends in health care delivery knows that “patient engagement” stands among the prominent topics in recent years. Many, many articles, meetings, and conference topics are devoted to ways of informing, educating, and motivating patients to play a more significant role in their own care. Strong evidence indicates that greater engagement leads to many desirable effects, from clinical outcomes and recovery time to satisfaction with choices. More than a few studies suggest that patients can protect themselves from medical mistakes or unnecessary treatments by taking an active role in their care.
Under the widespread interest in patient/consumer engagement lurks a troublesome implication: What if one of the most significant health threats is an unquestioning trust in medicine?
Which Comes First: Distrust or Engagement?
Correlations don’t indicate the direction of causation, nor do they rule out a completely separate influence. What does it mean that those who want to play a leading role in decisions are the least trusting?
Does that mean that trust leads to an indiscriminant reliance on providers? Or does that mean self-reliant people are inherently distrusting? Or, does it mean that when we have negative experiences that make us wary, we become both less trusting and more inclined to take a greater role? We can’t know for certain.
We found one hint in our 2011 survey: Individuals who had experienced a medical error wanted to play a greater role in upcoming medical decisions, regardless of age and gender, compared with those who had not experienced an error. This suggests that a bad experience may shift our role preferences leading us to be more actively engaged. Further, those with poor health and those with the lowest incomes have lower levels of trust than those with good health and high incomes, which may mean that those who are disenfranchised worry more about the motives of providers.
Interestingly, older consumers had a higher level of trust than younger consumers, going against the theory that experience generates caution. However, this may also reflect generational differences; those who grew up after the era of “Marcus Welby MD” and “doctor knows best” may not perceive white coats having the same authority as those who came of age during that time.
Does Health Care Need Warning Labels?
Regardless of why the relationship exists, it does lead me to wonder whether the pathway to high engagement requires a journey through at least skepticism and doubt, if not disbelief and distrust. How that learning should happen is the challenge.
In recent focus groups about choosing doctors, I was often surprised by the level of general acceptance that “all doctors have a medical degree, so what difference is there?” or “they know medical science.” The few who expressed caution in their choices (aka, “those who were engaged”) invariably reported having had an experience that taught them to ask questions and take a more active role.
So, do we require that something “bad” happen to us or someone we love before we become active participants? I hope not. For one thing that means consumers will be too late to avert that first bad experience. Plus, it puts consumers into a primarily defensive—although certainly active—position, which may not be ideal either.
Ideally, consumers would learn early in life that:
- there are inherent risks and uncertainty in all aspects of medicine;
- different doctors will often have different perspectives (meaning there may not be one right treatment or one right answer); and
- their own behaviors and choices will probably play a bigger role in health over their lifetime than anything that the health care system can do.
What concerns me is what, in the absence of those realizations, if we don’t want to wait for a harmful event. Do those of us promoting engagement need to resort to fear tactics that encourage mistrust? Does it suggest some form of doctor-bashing or dire warnings about one’s risk of injury at the hands of medical providers? I hope not.
However, at the moment it seems medicine is perceived at either end of the spectrum: the knight in shining armor (most often) or the dastardly villain. At the extremes, one is trusted in blind faith and the other suspected of ulterior motives. The task for all of us is how to create a more realistic image of medicine as a business, inhabited mostly by trained, well-intended professionals who are nonetheless fallible and subject to personal, ethical, and economic pressures. Each patient/consumer needs a healthy dose of skepticism, caution, and, yes, active involvement in care.
Lynch W, Ciucci C, Slover M. Altarum Institute Survey of Consumer Health Care Opinions - Spring/Summer 2013