Closing the Disclosure Gap: Medical Errors in Pediatrics

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Closing the Disclosure Gap: Medical

Errors in Pediatrics

Matthew Lin, MD, Hannah Famiglietti, MD

“Look at her. She doesn’t look right,”a worried mother explained to me. About a week ago, her daughter, Ada, an infant with complex congenital heart disease, had been admitted for evaluation of new-onset seizures. I joined Ada’s care team several days after she had been admitted. Her mother noted that since Ada had arrived at the hospital, her feeding had

become lackluster, she was sleeping less, and she was fussier than usual. Ada squirmed uncomfortably in bed while her mother

untangled the numerous

plastic wires that helped connect her to the electroencephalogram machine.

Although Ada’s preliminary electroencephalogram results revealed seizures, none of them correlated with her episodes of unrest. After pursuing several workups that ultimately led to dead ends, it soon became clear that her deterioration was due to worseningﬂuid overload. The admitting medical team had reordered an old home dose of diuretic that had not been weight-adjusted since her last admission. The dose was appropriately increased, and Ada’s condition improved. I sat down with Ada’s mother and, to the best of my abilities,

explained what had happened. Ada’s mother, although upset, was appreciative of the timely

disclosure and relieved that we had identiﬁed the cause of Ada’s symptoms.

Ada’s medical error is not an uncommon occurrence. Recent data suggests that medical errors may be the third leading cause of death in the United States.1In general, disclosure of errors to patients and their families is considered the standard of care. The American Academy of Pediatrics has afﬁrmed this practice in a recent statement

titled“Disclosure of Adverse Events in Pediatrics,”in which disclosure of preventable adverse events is described as“an ethical obligation.”2Similar recommendations have been put forth by the American

Medical Association and the Joint Commission on Accreditation of Healthcare Organizations.3,4

Given these guidelines, it is no surprise that hospitals have developed multiple channels for internal review of medical errors, including conﬁdential reporting systems, root cause analyses, and morbidity and mortality conferences.5But what about systems for educating trainees on how to communicate errors to patients and their families? For fellows, residents, and medical students, what should these conversations with families ideally look like? To better understand

these questions,ﬁrst consider what is known about

disclosure of medical errors in pediatrics.

Department of Pediatrics, New York University, New York, New York

Drs Famiglietti and Lin conceptualized and drafted the initial manuscript, reviewed and revised the manuscript, and approved theﬁnal manuscript as submitted.

Clinical scenarios and names of patients have been modiﬁed to protect patient conﬁdentiality.

DOI:https://doi.org/10.1542/peds.2019-0221 Accepted for publication Jan 22, 2019

Address correspondence to Hannah Famiglietti, MD, Department of Pediatrics, New York University, 550 1st Ave, New York, NY 10016. E-mail: hannah.famiglietti@

nyulangone.org

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

FINANCIAL DISCLOSURE:The authors have indicated they have noﬁnancial relationships relevant to this article to disclose. FUNDING:No external funding.

POTENTIAL CONFLICT OF INTEREST:The authors have indicated they have no potential conﬂicts of interest to disclose.

To cite:Lin M and Famiglietti H. Closing the Disclosure Gap: Medical Errors in Pediatrics.Pediatrics. 2019;143(4): e20190221

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Limited pediatric research reveals to us that parents want to know when something has gone wrong in their child’s care. Authors of survey-based studies have shown that anywhere between 77% and 99% of parents want to be informed of medical errors, regardless of the severity of harm caused, which is a preference that holds constant across lines of sex, race, and insurance status.6,7 Despite this preference, the attitudes of providers appear to deviate from this expectation. Surveys of

pediatric residents and attending physicians have revealed that only 43% and 53%, respectively, would disclose a hypothetical medical error to a family.8

It is reasonable to argue that 1 component of trainee reluctance to disclose errors to families may stem from a lack of training. In a survey of 37 pediatric residents at the

University of Toronto, 94% were involved at some point with a medical error, but only 41% had received education on error disclosure, and all respondents expressed an interest in receiving disclosure education.9 Similarly, graduates of pediatric hematology-oncology and critical care fellowships across the United States reported both limited and variable error disclosure training: less than half received training through dedicated lectures, and even fewer were trained through simulations, videos, and workshops.8

How, then, do we bridge the gap that exists between the professional duty to disclose errors and a trainee’s ability to do so? One potential next step would be to create a curriculum for pediatric trainees used to address the tenets of medical error disclosure through didactic and simulation training, ideally with feedback from medical supervisors and families. Responses from patient and physician focus groups have suggested that the key components of a disclosure include an explanation of why an error occurred, how the

harm will be minimized, and what will be done in the future to prevent recurrences.10A small body of literature has evaluated the use of simulations with or without didactics as interventions in teaching these components of error disclosure to trainees, primarily medical students, and residents in internal medicine, general surgery, emergency medicine, and obstetrics and gynecology.11–15 To date, the only study used to look at the use of error disclosure

simulations and didactics in pediatric providers was a study conducted at Stanford University with 16 pediatric oncology nurses.3In the study, participants had to disclose an error in 3 different scenarios: a perceived error, a minor error with no adverse effect, and a signiﬁcant error with uncertain long-term effects. The intervention was unique in that it incorporated trained parents recruited through Stanford’s Family Centered Care Program. The primary outcome, self-efﬁcacy, or the nurses’

perceived self-conﬁdence in being able to disclose an error, improved signiﬁcantly postintervention.

This study, although it was limited by its use of a small convenience sample and self-reported data, highlights several interesting concepts. First, because studying error disclosure in a clinical setting would be challenging to execute, incorporating parents into a controlled training simulation may serve as an alternative. Parent participation in simulations has the potential to increase simulation ﬁdelity and thus participant buy in.3 A recent multistakeholder conference on patient harm that included patients, families, clinicians, and researchers proposed that involving patients and families in research design for after–adverse event learning should be a priority. Many hospitals have partnered with the families of patients to collaborate on safety and quality initiatives. Such partnerships may serve as valuable

resources for building error disclosure education.

Second, how should we be measuring outcomes in disclosure training? Authors of existing studies on disclosure simulations have measured participant self-efﬁcacy, various verbal and nonverbal communication scoring systems, and knowledge of institutional

policies.3,11–15These are all

reasonable metrics that ideally should be tracked longitudinally when possible. Missing, however, are outcomes that include the input of patients and families. Because not all errors and families are made the same, perhaps what can best be gleaned from real-time medical errors are family perspectives of what caused the error and what the effect has been on their family. This information may in turn help hospitals and physicians learn how to improve or design new safety-focused interventions.

Errors are inescapable in medicine. Today’s professional standards and parental expectations require transparency from providers regarding medical errors. Disclosure of errors allows patients and their families to make informed choices and ultimately helps preserve and strengthen the doctor-patient relationship. To be able to practice effectively in today’s medical environment, trainees need educational interventions, ideally ones that incorporate the

perspectives of patients and families or the patients and families

themselves, to improve disclosure preparedness.

REFERENCES

1. Makary MA, Daniel M. Medical error-the third leading cause of death in the US.

BMJ. 2016;353:i2139

2. Committee on Medical Liability and Risk Management; Council on Quality Improvement and Patient Safety. Disclosure of adverse events in

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4. Loren DJ, Klein EJ, Garbutt J, et al. Medical error disclosure among pediatricians: choosing carefully what we might say to parents.Arch Pediatr Adolesc Med. 2008;162(10):922–927 5. Bradley CK, Fischer MA, Walsh KE.

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medical error to parents and paediatric patients: assessment of parents’attitudes and inﬂuencing factors.Arch Dis Child. 2010;95(4): 286–290

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9. Coffey M, Thomson K, Tallett S, Matlow A. Pediatric residents’decision-making around disclosing and reporting adverse events: the importance of social context.Acad Med. 2010;85(10): 1619–1625

10. Gallagher TH, Waterman AD, Ebers AG, Fraser VJ, Levinson W. Patients’and physicians’attitudes regarding the disclosure of medical errors.JAMA. 2003;289(8):1001–1007

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a course in speciﬁc communication skills.J Surg Educ. 2014;71(6): e116–e126

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DOI: 10.1542/peds.2019-0221 originally published online March 13, 2019;

2019;143;

Pediatrics

Matthew Lin and Hannah Famiglietti

Closing the Disclosure Gap: Medical Errors in Pediatrics

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DOI: 10.1542/peds.2019-0221 originally published online March 13, 2019;

2019;143;

Pediatrics

Matthew Lin and Hannah Famiglietti

Closing the Disclosure Gap: Medical Errors in Pediatrics

http://pediatrics.aappublications.org/content/143/4/e20190221

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