Intended for healthcare professionals

Opinion

Disclosure programmes in the US—an inadequate response to medical error

BMJ 2024; 385 doi: https://doi.org/10.1136/bmj.q1318 (Published 14 June 2024) Cite this as: BMJ 2024;385:q1318
  1. Gail Mazur Handley, patient advocate12
  1. 1The Collaborative for Accountability and Improvement, Seattle, Washington, USA
  2. 2Patient author

It’s widely accepted that communicating openly with patients after a medical error is a moral imperative, but its practice has been elusive—partly because the mechanics of the process are far from intuitive.1 In the US, an important step toward creating a systematic process for disclosing errors has been the development of communication and resolution programmes (CRPs). These disclosure programmes are now widely promoted to medical facilities, primarily hospitals, as an ethical and transparent way to respond to medical errors.

CRPs “strive to ensure that patients and families injured by medical care receive prompt attention, honest and empathic explanations, sincere expressions of reconciliation including financial and non-financial restitution, and reassurance from efforts to prevent future harm to others.”2 The goal is to promote healing, restore trust between patient and provider, and bring learning from tragedy.3 Yet after my experience with CRPs, I have serious doubts as to whether their design sufficiently motivates healthcare organisations to wholeheartedly commit to full disclosure.4

Stories of harm and non-disclosure

A medical error permanently changed my life. It resulted in debilitating hormonal deficits and brain damage that caused both cognitive deficits and movement disorders. Yet the hospital involved did not disclose the error, or that it had a disclosure programme. It was only years later, when a friend sent me an article about CRPs, that I discovered the hospital had one.

In retrospect, I believe it was largely the hospital’s lack of transparency and accountability that prevented me from being able to move on, eventually leading me to tell my story online and invite other harmed patients to share theirs. I wanted to know whether my experience with a CRP was an outlier, or if it was part of a wider pattern of failings. Dozens of patients responded with stories of being stonewalled when asking questions about an unexpected or distressing outcome, or of pages missing from their medical records. The most common problem, however, was hospitals failing to disclose that an error had even occurred.

Among the stories, I also noticed that no one knew if their hospital had a CRP. I found this so incredible that I called their hospitals and asked them directly if they had a disclosure-type programme. I was told that they were unsure, they didn’t have time to talk, they felt uncomfortable talking about it, or that they weren’t authorised to answer. Some hung up on me. And when I contacted the Joint Commission, the major accreditor of US hospitals, they confirmed that a hospital’s decision to implement a disclosure programme is voluntary and can be kept confidential.

Dissatisfied, I hunted through dozens of newspaper articles about disclosure programmes and found that, while hospitals often fail to tell patients about their CRP, they tend to be forthright with journalists. This enabled me to identify 33 hospitals with documented CRPs. But when I checked their websites, I discovered that information about their programme, if provided, was difficult to find: patients searching the website would need to know specific key words or acronyms (CRP being one). In effect, to learn about the programme, patients would have to already know that it exists.

During the admissions process, hospitals commonly provide each patient and their family with a booklet of important information—but these typically omit any mention of the hospital’s CRP. Instead, many hospitals inform patients about their programme using a two-step procedure: firstly, an error is flagged by hospital staff; and, secondly, the patient is told about the error and that the hospital has a CRP in place.

While this two-step procedure may be effective when an error is flagged, it’s inadequate as a general approach because even hospitals with the best of intentions cannot detect all errors. When a hospital fails to note an error, the patient who has been harmed is not told that a CRP exists. But if hospitals were fully transparent about their CRP, all patients would have the opportunity to turn to the programme to get the answers and information they deserve. For example, if a patient is aware of their hospital’s CRP and begins to notice symptoms potentially caused by their medical care, the programme could serve as an information pipeline enabling the patient to alert the hospital of a potential error, while also facilitating the hospital in providing the patient with the benefits and support these programmes promise. Conversely, when harmed patients remain in the dark about CRPs, they are unlikely to inform the hospital of their first-hand experiences—often crucial to revealing undetected errors—and the opportunity to learn from these errors is impaired or lost entirely.

A straightforward solution is to provide all patients and their families with an information booklet as before, but add a brief introduction to the hospital’s CRP and a link to their website page with further details. It is not enough to share CRP information only with individual patients, and only after determining a medical error has occurred.

Disclosure can’t be done by halves

I always assumed that the hospital’s failure to inform me about its disclosure programme was an anomaly—yet it’s been a common theme among the patients I’ve spoken to since starting my advocacy work. I see it as part of a critical flaw in the programme’s design: hospitals are free to cherry pick which errors they will disclose—and which they will not. The practice of selective disclosure allows errors that are likely to trigger lawsuits or be especially costly (for example, those involving clear negligence or the most serious harms) to be hidden.5

If hospitals are to fulfil their mission of healing after harm, they cannot achieve it by half measures. The very existence of CRPs holds out the promise of a system that will embody the values of fairness and transparency. But in an equitable system, all patients and families would know if their hospital had a CRP and the mechanisms that are available to deal with patient harm. If CRPs are truly intended to benefit patients and families, their existence must be disclosed long before an adverse event occurs. The question is, are hospitals prepared to live up to their stated values—or will they regress into business as usual?

Acknowledgments

Many thanks to Helen Haskell for her guidance, insight, and support.

Footnotes

  • Competing interests: none disclosed.

  • Provenance and peer review: not commissioned; not externally peer reviewed.

References