More than words: Patients’ views on apology and disclosure when things go wrong in cancer care

Abstract

Objective

Guidelines on apology and disclosure after adverse events and errors have been in place for over 5 years. This study examines whether patients consider recommended responses to be appropriate and desirable, and whether clinicians’ actions after adverse events are consistent with recommendations.

Methods

Patients who believed that something had gone wrong during their cancer care were identified. During in-depth interviews, patients described the event, clinicians’ responses, and their reactions.

Results

78 patients were interviewed. Patients’ valued apology and expressions of remorse, empathy and caring, explanation, acknowledgement of responsibility, and efforts to prevent recurrences, but these key elements were often missing. For many patients, actions and evidence of clinician learning were most important.

Conclusion

Patients’ reports of apology and disclosure when they believe something has gone wrong in their care suggest that clinicians’ responses continue to fall short of expectations.

Practice implications

Clinicians preparing to talk with patients after an adverse event or medical error should be aware that patients expect their actions to be congruent with their words of apology and caring. Healthcare systems need to support clinicians throughout the disclosure process, and facilitate both system and individual learning to prevent recurrences.

Introduction

The last decade has witnessed a concerted effort by healthcare organizations and clinicians to communicate more effectively with patients following adverse events and errors [1]. Hospital accreditation standards and some state laws require that patients be informed about all outcomes of care, including “unanticipated outcomes” [2], [3]. Institutions, healthcare systems, states and countries have developed and implemented policies on disclosure of adverse events and medical errors, and emphasize the importance of both sharing information about the event and offering an empathic apology. One influential disclosure policy is the Harvard Consensus statement, “When Things Go Wrong” [4]; similar recommendations by other national organizations exist [5], [6]. Policies vary, but most call for an explanation of what occurred, a statement of responsibility, an apology with an expression of regret, and a statement that efforts will be made to prevent recurrences. Some organizations are also developing mechanisms for making rapid and fair offers of compensation following harmful errors [7].

Policies, consensus statements and opinion pieces reference research findings, but may not add to an evidence base. Further, such documents usually reflect the perspectives of clinicians and healthcare leaders, rather than of patients and family members. There has been relatively little empirical research into patients’ perspectives on disclosure. Studies of lay people asked to imagine themselves in hypothetical situations involving medical errors have found that lay people respond more favorably when clinicians are forthcoming about what happened, accept responsibility, apologize, and refer to efforts to prevent recurrences [8], [9], [10], [11]. Further research into patients’ actual experiences with errors are needed to understand patients’ preferences for disclosure and apology, as well as their actual experiences. Despite the widespread dissemination of disclosure guidelines, clinician surveys suggest a persistent gap between recommendations for apology and disclosure and current practice [12], [13], and physicians’ responses to hypothetical errors reveal numerous shortcomings [9], [14]. One study of patients who had participated in disclosure conversations under a new policy revealed mixed results, and suggested apologies and changes in practice were not communicated [15]. Our study of parents who believed their child had experienced a medical error also identified deficits in clinicians’ responses; most parents reported no one had explained what went wrong, and felt that no one involved understood the full impact of the event [16]. Failed disclosures can disrupt patient–clinician relationships, and may increase the chances of malpractice litigation [17]. These studies indicate a continuing need to examine patients’ perspectives on the specific components of an effective response.

Cancer care, with its attendant communication tensions and challenges, is inherently stressful for patients. It is complex, usually involving multiple clinicians, toxic therapies, uncertain outcomes, and severely ill patients, and the potential for adverse events and medical errors is great. Patients with cancer are physically and emotionally vulnerable, and rely on their clinicians for information and emotional support as well as for medical care [18]. Communication breakdowns during cancer care may damage the patient–clinician relationship, negatively impact care, and result in worse outcomes [19], [20]. The consequences of adverse events and errors can be devastating for patients with cancer, making effective communication after such events crucial.

We explored patients’ perspectives on problematic events and on clinicians’ responses to these events. We sought to identify the key elements of apology and disclosure, to compare how these key elements matched current recommendations, and to determine the extent to which clinicians’ responses were consistent with recommended practices.