Academic journal article The Hastings Center Report

How Do Patients Know?

Academic journal article The Hastings Center Report

How Do Patients Know?

Article excerpt

The way patients make health care decisions is much more complicated than is often recognized. Patient autonomy allows both that patients will sometimes defer to clinicians and that they should sometimes be active inquirers, ready to question their clinicians and do some independent research. At the same time, patients' active inquiry requires clinicians' support.


Bioethicists typically understand patient autonomy as having an explicit epistemic component: they equate patient autonomy with informed free choice in the management of one's own health care. According to a traditional picture, the epistemic component of patient autonomy is a necessary condition for autonomy, but no more than that: patients cannot choose autonomously unless they are well informed, but they can exercise their autonomy only through the act of choosing once they are already informed. In their classic work on informed consent, Ruth Faden and Tom Beauchamp claim, "So long as the understanding is substantial, it makes no difference whether this understanding is self-taught, reflects prior experiences and history, is derived from a videotape, or finds its inspiration in divine reflection." (1) However, this essay argues that laypeople's practices of inquiry and information collection play a more integral and complex role in autonomy than this. In order to understand the relationship between autonomy and knowledge in the domain of health care, we need to see how laypeople's autonomy can be enhanced or compromised in the course of their attempts to collect, understand, and reason about medical information. (2)

Patients as Active Inquirers

We have recently witnessed a radical proliferation of sources of medical information for laypeople, as well as a major transformation in the methods available for gathering and assessing it. Most of us in developed countries now have easy access round-the-clock to health programming on television, (3) a huge selection of health magazines and guidebooks, and, most importantly, a vast array of medical and health resources on the Internet. These resources include sites produced by professional health associations; online, peer-reviewed journals; commercial sites; sites produced by advocacy groups, both radical and mainstream; and layperson-run, participatory sites like message boards and chat rooms. We are also bombarded by advertisements from pharmaceutical companies, messages from advocacy groups, medical stories in the media, and public health campaigns. The sources of medical information available to laypeople are not hierarchically ordered or centrally organized and packaged for consumption. Rather, the information available to us forms an organic, multilayered array through which we must negotiate a path. This space of information is complicated, unregulated, and fraught with the potential for deception and conflicts of interest. We rarely, if ever, encounter "pure" information uninflected by voice and cultural context, and the skills we need to read, interpret, and assess all the information available to us are sophisticated indeed.

The impact of these changed opportunities on laypeople's actual practice of medical inquiry has been profound. By 2005, over two-thirds of North American adults were regular Internet users, (4) and 80 percent of users sought health information online. (5) Seeking online health information is the single most popular use of the Internet after e-mail. (6) Researchers with the Pew Internet and American Life Project have found that on an average day, more Americans look for health information online than see a doctor, (7) and those with limited access to the traditional health care system are particularly likely to use online sources in lieu of doctors. Most North Americans have managed to develop a level of skill in searching and sorting for relevance and reliability that was unimaginable a few years ago. Aided by staggering advances in search engine technology, average users now navigate with reasonable competence through millions of search hits on any given health topic. …

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