I think we should adopt the method of investigation that we’d use if, lacking keen eyesight, we were told to read small letters from a distance and then noticed that the same letters existed elsewhere in a larger size and on a larger surface. We’d consider it a godsend, I think, to be allowed to read the larger ones first and then to examine the smaller ones, to see whether they really are the same.
(Socrates in Plato, Republic, 368d, Grube trans.)
A significant proportion of the U.S. population exhibits low health literacy. Evidence suggests that low health literacy is correlated with higher medical costs and poorer health outcomes. Even more concerning, evidence suggests that low health literacy threatens patients’ and families’ autonomy and exacerbates injustices in patients who are already vulnerable to difficulties navigating the health care system. There is also, however, increasing evidence that health literacy interventions—including initiatives such as plain language practices and teach-back—improve comprehension and usefulness of health care information. I show how health literacy best practices can enhance the work of clinical ethicists in their primary roles of policy, consultation, and education. In the final section, I suggest ways health literacy initiatives may be enhanced with insights from clinical ethicists.
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Definitions vary slightly, but this is one of the most widely cited.
Note that this is not evidence that members of these groups face inherent obstacles to health literacy. According to a recent study by Wu et al. (2017), low health literacy in China is correlated with low economic status and education level, but not with ethnicity or advanced age. See Guidry-Grimes and Victor (2012) for more on how cultural factors compound or alleviate vulnerabilities.
Whether all these studies track the same phenomenon identified as “health literacy,” whether health literacy is measured the same across experiments, and just how “low” health literacy must be to suggest these effects is unclear. However, research on strategies purporting to address low health literacy has demonstrated promising results for reducing the problems associated with low health literacy.
There is growing empirical evidence that any given social structure can have exclusionary effects that can contribute to certain types of injustices even absent conscious intent to construct those obstacles. See, for example, the special issue of Cambridge Quarterly of Healthcare Ethics on “Bioethics and Health Disparities” (Stone and Dula 2012). For more on how communication structures in particular create these obstacles, see Katz et al.(2007), O’Connor et al. (2010), and Marshall et al. (2011).
Again, the point here is not to accuse anyone of nefarious intent. Structures can exclude a population by default.
See Willerton (2015) for other historical examples from Geoffrey Chaucer and Robert Cawdrey.
Tamariz et al.(2013) found that, irrespective of readability, large numbers of participants did not understand key elements of their study after the informed consent process.
The U.S. Department of Health & Human Services warns health care providers and educators to be cautious of readability formulas for this and other reasons (Agency for Healthcare Research and Quality 2015a).
It is also important to note that physicians also suffer significant deficiencies in numeracy (Wegworth and Gigerenzer 2002), and therefore, the burden of patient education cannot be expected to fall solely on their shoulders.
This may also contribute to the increasingly visible problem of epistemic injustice. Epistemic injustice is a type of “wrong done to someone specifically in their capacity as a knower” (Fricker 2007, p. 1). This wrong can take different forms, but a common one is “testimonial injustice,” which occurs when biases and prejudices cause a hearer to discredit or deflate the credibility of someone’s testimony. In health care, this occurs when vulnerable patients (whether because of advanced age, ethnicity, socio-economic status, educational background, pregnancy, etc.) are regarded as lacking credibility or authority to speak about their experience of their illness or their preferences and interests when making medical decisions (See, for example, Carel and Kidd 2014).
While these sample sizes are small, they are comparable to other sample sizes in the field, and the authors note in both studies that there is no known optimal size for Q-sort studies.
Though closed-ended questions can sometimes help facilitate comprehension when structuring meetings. See American Society for Bioethics and Humanities (2017, pp. 15–19).
I have left “addressing” intentionally vague. This is because there are two ways of conceptualizing health literacy. The first is as a set of skills on the part of patients. Addressing health literacy as a skills problem would mean interventions that “raise” or “improve” or “enhance” health literacy skills. The second is as a set of tools to help people with low health literacy by rewriting health information at the level of their competency. Addressing health literacy as a demands/expectations problem would mean developing or revising content so that it meets the needs of people with low health literacy where they are. This distinction is important for the theory and organization of health literacy interventions. In practice, however, it is difficult to tease these apart—our primary indicators are whether health behavior/outcomes “improve” according to some meaningful standard of improvement.
Such studies are clearly subject to self-selection bias, but they are suggestive of how clarity can reduce obstacles to usefulness. See Thaler and Sunstein (2009, pp. 164–167) for an example of how lack of clarity—in addition to the sheer volume of choices—caused problems for Medicare Part D. See Jereb (1991) for other examples of how plain language can reduce negative feedback from clients.
In Oregon, the state that first initiated this type of order in 1990, the “P” stands for “portable.” Many other states, including mine (Arkansas), use “Physician,” to explicitly limit who has the authority to write this type of order. States who wish to broaden the authority to other medical providers, such as nurse practitioners, commonly use “M” (MOLST), for “Medical Orders for Life Sustaining Treatment.”
See Tom Gilovich (1991, pp. 90–94) on “sharpening and leveling.”
Thaler and Sunstein coined this phrase to describe how we organize the context in which people make decisions (2009, p. 3).
Whether this actually counts as a nudge has been challenged by Saghai (2013). Gorin et al.(2013) conclude that most of these patients had no settled views of these matters to manipulate, and thus, no authentic beliefs about the decisions, so therefore, nudges are justified. Saghai argues that, if choice architecture creates a belief de novo rather than changing a belief, it is not technically a nudge.
See Douglas and Proudfoot (2013) for an argument along these lines with respect to cancer treatments.
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Thanks to Kristie Hadden, D. Micah Hester, Laura Guidry-Grimes, and three anonymous reviewers at HEC Forum for comments on earlier versions of this paper.
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Watson, J.C. Talking the Talk: Enhancing Clinical Ethics with Health Literacy Best Practices. HEC Forum 31, 177–199 (2019). https://doi.org/10.1007/s10730-019-09369-5
- Health literacy
- Plain language