Importance Patient failure to disclose medically relevant information to clinicians can undermine patient care or even lead to patient harm.
Objective To examine the frequency of patients failing to disclose to their clinicians information that is relevant to their care and their reasons for doing so.
Design, Setting, and Participants Two national nonprobability samples were recruited to participate in an online survey, one using Amazon’s Mechanical Turk (MTurk) from March 16 to 30, 2015 (2096 respondents), followed by one using Survey Sampling International (SSI) from November 6 to 17, 2015 (3011 respondents). Data analysis was conducted from September 28 to October 8, 2018. After dropping respondents meeting the exclusion criteria, the final sample sizes were 2011 (MTurk) and 2499 (SSI).
Main Outcomes and Measures The primary outcome measures were self-reported nondisclosure of 7 types of information to their clinician (eg, did not understand instructions, medication use) and reasons for nondisclosure (eg, embarrassment, not wanting to be judged).
Results There was a total of 4510 overall respondents. Of 2096 respondents, 2013 completed the MTurk survey (96.0% completion rate) and 2011 were included in the analysis. Of 3011 respondents, 2685 completed the SSI survey (89.2% completion rate) and 2499 were included in the analysis. The mean (SD) age of the participants was 36 (12.4) years for MTurk and 61 (7.59) years for SSI. Both samples were predominantly white (MTurk: 1696 [84.3%]; SSI: 1968 [78.8%]). A total of 1630 MTurk participants (81.1%) and 1535 SSI participants (61.4%) avoided disclosing at least 1 type of information. Disagreeing with the clinician’s recommendation (MTurk: 918 of 2010 respondents [45.7%]; SSI: 785 of 2497 respondents [31.4%]) and not understanding the clinician’s instructions (MTurk: 638 of 2009 respondents [31.8%]; SSI: 607 of 2497 respondents [24.3%]) were the most common occurrences. The most commonly reported reasons for nondisclosure included not wanting to be judged or lectured (MTurk: 81.8% [95% CI, 79.8%-83.9%]; SSI: 64.1% [95% CI, 61.5%-66.7%]), not wanting to hear how harmful the behavior is (MTurk: 75.7% [95% CI, 73.5%-78.0%]; SSI: 61.1% [95% CI, 58.5%-63.8%]), and being embarrassed (MTurk: 60.9% [95% CI, 58.9%-62.9%]; SSI: 49.9% [95% CI, 47.8%-52.1%]). In both samples, participants who were women (MTurk: odds ratio [OR], 1.88 [95% CI, 1.49-2.37]; SSI: OR, 1.38 [95% CI, 1.17-1.64]), younger (MTurk: OR, 0.98 [95% CI, 0.97-0.99]; SSI: OR, 0.98 [95% CI, 0.97-0.99]), and with worse self-rated health (MTurk: OR, 0.87 [95% CI, 0.76-0.99]; SSI: OR, 0.80 [95% CI, 0.72-0.88]) were more likely to report withholding information.
Conclusions and Relevance Many respondents in these surveys intentionally withhold important information from their clinicians and were most likely to do so when they disagreed with or misunderstood their clinician’s instructions. A better understanding of how to increase patients’ comfort with reporting this information may improve the clinician-patient relationship and patient care.
At only one point in the body of the entire paper is the word “doctor” used, which is in the methods section where the authors described the survey instrument:
The survey defined “health care provider” as “any medical care giver, such as a doctor, physician's assistant, or nurse.”
Nevertheless Ron Harman King, writing a piece for Medpage Today, says the findings of this study “jolted” him into the idea that we should drop the title “doctor.” The piece is wrong on so many levels I don’t know where to start. Here’s my attempt to triage my reactions into a reasonably coherent post.
King starts with theatrical language to introduce his premise:
A recent study published in JAMA1 has jolted me into considering a crazy, radical idea. The article's title is, and I quote, "Prevalence of and Factors Associated With Patient Nondisclosure of Medically Relevant Information to Clinicians." Whew, can't wait to see the TV mini-series…
Even more chilling were the common reasons respondents gave for keeping secrets, in descending order: Patients didn't want to be judged or lectured. They didn't want to hear how harmful their behavior is. They feared embarrassment. They didn't want the clinician to think they're difficult patients. And they didn't want to take up more of the clinician's time.
No one I know of who is in touch with real medicine would feel jolted or regard as chilling the findings of this paper. It’s been well known throughout the history of medicine that patients lie, withhold information and withhold their feelings.
Then comes the non sequitur:
Which provoked my crazy, radical idea. Maybe it's time to take a long-standing healthcare tradition, wrap it up into a 40-gallon contractor-grade trash bag, and cart it out to the dumpster in the alley. That is, perhaps it's time patients stop addressing physicians as "Dr. So-and-So."
What does it mean if you drop the title “doctor”? It’s a pretense. It means pretending you don’t have superior knowledge and judgment that might help the patient. It’s part of a broader movement in medicine which was driven for years mainly by consumerism but is more recently gaining traction within the profession itself. It seeks to abandon all notions of expertise and completely democratize the transactions among patients, families and all members of the healthcare team. Is this a good thing?