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Communicating with patients about diagnostic errors in breast cancer care: Providers’ attitudes, experiences, and advice
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Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Communicating with patients about diagnostic errors in breast cancer care: Providers’ attitudes, experiences, and advice Lisa M. Reischa , Carolyn D. Proutyb , Joann G. Elmorec,* , Thomas H. Gallaghera a b c
Department of Medicine, University of Washington, Seattle, WA, USA The Evergreen State College, Olympia, WA, USA David Geffen School of Medicine at UCLA, Los Angeles, CA, USA
A R T I C L E I N F O
A B S T R A C T
Article history: Received 25 April 2019 Received in revised form 24 October 2019 Accepted 21 November 2019
Objective: To gain understanding of breast cancer care providers’ attitudes regarding communicating with patients about diagnostic errors, to inform interventions to improve patient- provider discussions. Methods: Focus groups were held in three U.S. states involving 41 breast cancer care providers from a variety of specialties. Discussions focused on providers’ experiences with potential errors in breast cancer diagnosis, communication with patients following three hypothetical diagnostic vignettes, and suggestions for how and why diagnostic errors in breast cancer care should be communicated. Transcripts were qualitatively analyzed. Results: Providers were more willing to inform breast cancer patients of a diagnostic error when they felt it would be helpful, when they felt responsible for the error, when they were less concerned about litigation, and when the patient asked directly. Conclusions: Breast cancer care providers experience several challenges when considering whether to inform a patient about diagnostic errors. A better understanding of patients’ preferences for open communication, combined with customized tools and training, could increase clinicians’ comfort with these difficult discussions. Practice implications: Providers gave suggestions to facilitate discussions about diagnostic errors when these events occur, including themes of education, honesty, and optimism. © 2019 Published by Elsevier B.V.
Keywords: Physician-patient communication Breast cancer Cancer care Medical errors Qualitative methods Focus groups
1. Introduction The importance of transparent and timely communication with patients following breakdowns in care is widely recognized [1].The recent National Academy of Medicine report Improving Diagnosis in Health Care drew special attention to the need for effective communication with patients following diagnostic errors. [2]. Open communication with patients about diagnostic errors has proven especially hard in cancer care [3,4]. Since most patients diagnosed with breast cancer have had multiple prior mammograms, it is natural for patients and providers to look back at these older films and wonder whether the cancer could have been diagnosed earlier. Delayed diagnosis of cancer is a common and costly source of malpractice litigation, which can make it difficult for providers to know what to say to patients when a breakdown in the diagnostic process occurs [5]. Cancer is a complex and
* Corresponding author at: University of California, Los Angeles 1100 Glendon Ave., Suite 900, Los Angeles, CA, 90024, USA. E-mail address: [email protected] (J.G. Elmore).
challenging disease to treat, and patients may feel exceptionally vulnerable, making communication tenuous, especially when care has gone wrong [6]. One survey of nearly 300 primary care physicians highlighted the challenges of communicating with cancer patients about diagnostic errors [7]. When responding to a hypothetical case involving a delayed diagnosis of cancer, over half reported they would not mention the delay to the patient unless she specifically inquired. There are multiple reasons why a gap between expectations for disclosure and current practice has persisted, ranging from provider fear and embarrassment to inadequate institutional support [8]. Breakdowns in the disclosure process exacerbate patients’ suffering and inhibit the ability of healthcare institutions to learn from what happened and improve quality [9,10]. While such surveys can provide helpful quantitative information regarding how providers might respond to such challenging situations, they offer limited insights into what providers would say to patients and as well as the why, namely the factors motivating providers’ responses. In addition, few prior studies have included the full range of providers who care for breast cancer patients, nor focused on the issue of communicating with patients
https://doi.org/10.1016/j.pec.2019.11.022 0738-3991/© 2019 Published by Elsevier B.V.
Please cite this article in press as: L.M. Reisch, et al., Communicating with patients about diagnostic errors in breast cancer care: Providers’ attitudes, experiences, and advice, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.11.022
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about diagnostic errors, information that will be important for interventions to improve communication [11]. Therefore, we conducted a series of focus groups with cancer care providers across a variety of clinical sub-specialties and professions to explore how the specific setting of breast cancer diagnosis influences the nature of medical errors, as well as whether and how these errors are communicated to patients. 2. Methods 2.1. Recruitment and participation Participants were recruited by email from five healthcare organizations in Washington, California, and Oregon. All invitees were involved in the screening, diagnosis, treatment or survivorship of breast cancer. One-hour audiotaped focus groups were held between 2008 and 2011. Participants signed informed consent forms prior to the discussion and received $150 for their participation. All procedures were HIPAA compliant, and approval was obtained from University of Washington and University of California San Francisco Institutional Review Boards.
Table 1 Demographics of Focus Group Participants. Providers
N
Valid %
Total Sex (female) Age Years since licensure Provider type Primary care physician Radiologist Medical/radiation oncologist Surgeon Pathologist Other, non-MD (RN, NP, genetic counselor)
41 29
100 70.7
Years (mean)
51.0 24.6 6 11 10 10 1 3
14.6 26.8 24.4 24.4 2.4 7.3
the meaning of specific passages. Next, two investigators (LR, YM) re-read the transcripts to code the frequency of themes and identify quotations exemplifying themes that had emerged. Frequently occurring themes that recurred in at least three of the five groups are presented herein. Evaluation of the transcripts revealed thematic saturation had been achieved by the fourth group.
2.2. Discussion guide 3. Results Two investigators (TG, LR) co-facilitated each of the five groups using a discussion guide developed by the authors. Discussions began with an explanation of the difference between an adverse event (“any harm that is caused by medical management and that results in measurable disability”) and a medical error (“the failure of a planned action to be completed as intended, or the use of a wrong plan to achieve an aim”) [12]. Next, participants discussed three hypothetical vignettes designed to represent standardized situations of: A. Appropriate care; B. Adverse event with no error; and C. Diagnostic error (see Box 1 for full vignettes). The focus groups concluded by discussing barriers to communicating with patients about potential errors in breast cancer diagnosis and suggestions for improvement. 2.3. Analysis Audio-recordings were transcribed verbatim for qualitative analysis. We conducted iterative rounds of analysis using immersion-crystallization techniques to come to joint agreement on key themes [13]. Initially, two investigators (LR, CP) independently reviewed the transcripts to develop a list of key themes from the discussions and then met to resolve differences of opinion about
3.1. Participants Each group consisted of 5–11 participants, including both men and women, with diverse medical backgrounds related to breast care (total N = 41; see Table 1). Specialty fields included internal medicine/primary care, radiology, medical oncology, radiation oncology, surgery, pathology, and other related fields such as genetic counseling and nursing. 3.1.1. Challenges related to breast cancer diagnosis and the patient population Participants expressed that medical errors related to breast cancer diagnosis posed unique communication challenges. These disease-specific issues began with the gender of the majority of their patients. “The patients are more challenging. Women take care of everything, right? They take care of their entire family, they work, they do everything. They’re multi- taskers. So they handle their health care the same way. That complexity then adds many more little points in the event line of the woman’s care to have errors, to have adverse outcomes or to have side effects.”
Box 1. Vignettes
A. Appropriate Care
Vignette A patient has been recently diagnosed with cancer. There is a lesion visible on prior film, but the quality of her care has been good. The patient wants to know whether there was a delay in the diagnosis of her cancer.
B. Adverse event with no error
A patient comes in with a lump you think is associated with her menstrual cycle. You recommend she come back for a recheck. She does not do that, but comes in 3 months later for another reason. She neglects to mention the lump and you forget to recheck the lump. She is diagnosed with breast cancer 12 months later.
C. Diagnostic error
You are a radiologist reviewing a diagnostic mammogram for a new palpable lump. The films show an obvious malignant lesion. You realize a mistake was made in your prior interpretation of this woman’s last screening mammogram. Prior films had apparently been put up in reverse order, and you mistakenly concluded that the calcifications were decreasing in number when they were actually increasing. Your prior incorrect interpretation has resulted in a delayed diagnosis.
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Participants noted that there was considerable “hype” in breast cancer, which they attributed to media “bling factor” surrounding breast cancer and early detection. “We’ve got the Race for the Cure, you’ve got pink hats, you’ve got pink stuff. I mean, nobody’s wearing their ‘I have colon cancer’ t-shirts and tennis shoes and bracelets and all that. And Ralph Lauren’s now got his purse for breast cancer. And we never even get the colon cancer purse. And it’s crazy. What you’ve done now is you’ve increased anxiety to a whole new level in these patients.” Due to patient anxiety and media-induced “hysteria”, breast patients were described as being more challenging to communicate with. Participants believed that the prospect of broaching a sensitive topic such as a delayed cancer diagnosis with a highly anxious patient population was a challenging conundrum. 3.2. Adverse events and medical errors Participants believed that an additional challenge in breast cancer diagnosis was determining what constituted a “true” error. Due to the nature of cancer growth, participants noted it is often impossible to tell in retrospect if the cancer could have been diagnosed earlier. Also, if a cancer was diagnosed within a 6-month follow-up period, participants did not consider this delayed diagnosis to be a medical error but rather within the standard of practice. “I would say that missing a lesion is an adverse event, but it is not a medical error. If you fail to appreciate that you missed the target, that becomes a medical error. And if, in fact, you miss a diagnosis of a cancer, now you have a preventable adverse event, meaning delay of the diagnosis of breast cancer.” A definitive “clear-cut” delay in diagnosis, such as a missed cancer which should have been seen prospectively (not just in retrospect), was considered by participants to be a true medical error (rather than an adverse event). Yet some participants argued that missing a cancer on a film did not even fit the criteria for an adverse event, described as “that’s biology.” Given this back-drop of the complexities involved with this patient population, focus group participants considered two questions (noted below), and several themes emerged: 3.3. What do physicians consider when deciding whether to disclose potential diagnostic errors in breast cancer care to their patients? 3.3.1. Disclosure as helpful vs. harmful Participants expressed the belief that health care providers cannot predict whether patients are happier learning of a medical error, or happier being sheltered from this information. Participants were concerned that disclosing this sensitive information may “heap more suffering” on the patients, stating beliefs such as “I don’t want to make them feel any worse than they do.” “When you’re initially hitting this person with, you’ve got an abnormality that may be a breast cancer and we need to biopsy it, I just don’t understand why you would say to somebody, ‘and by the way, it was there last year and we should have done this last year.’” A few participants went so far as to assert that patients do not require honesty. “Should we go to a Perry Mason absolute truth? The answer is no.” One physician stated, in response to the “clear-cut” diagnostic error hypothetical vignette,
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“I don’t think you do it with anybody. I think all you say is “this represents a change since the prior exam.” Others, however, believed disclosure was contingent upon the level of physical and psychological harm disclosure might cause to the patient. If the error did not cause harm to the patient, many participants believed they could leave well enough alone. “Do you have the right to inflict pain on her potentially, unsolicited? I still think that’s wrong.” “I just don’t understand why you would say to somebody, ‘and by the way it was there last year and we should have done this last year.’ I just think it’s information that they’re on overload at this point.” 3.3.2. Fear of litigation To complicate matters, participants agreed that breast care practices are strongly influenced by the high cost of litigation. Concern about litigation made some participants more comfortable with disclosure and other participants less comfortable. Those who supported disclosing diagnostic errors in breast cancer care felt patients were less likely to be angry and sue if their doctor carefully and truthfully disclosed an error. They believed emphatically that patients who are “blown off” and then discover the truth on their own are the most angry. “You need to be as transparent as possible, because the patients during this time, they’re hyper aware in terms of whether you’re trying to hide something. If you’re just completely open, right away you’ve established a good rapport, which is what pushes the malpractice issue often completely off the table.” Other participants believed disclosure of a clear-cut error would invite a lawsuit. “What we’re trying to do is prevent a lawsuit, by only dictating the current report. And the buzzword that’s used is there is ‘an evolving density’.” 3.3.3. Patient inquisitiveness Many participants believed they would reserve disclosure for cases where the patient was specifically inquiring. “I think the patient can ask, if she wants to know.” “The patient will choose to either know that information or not.” Some participants felt strongly that their job was not to “stir the pot” by volunteering information. “You can absolutely kick a hornet’s nest.” “And when you way causing harm to the patient, what one patient might really want to know the other has no interest in. And you need to be really sensitive to what it is, where they are, and bringing them along.” Others would disclose if they felt the patient would ultimately discover the medical error on their own, creating a much more volatile situation. “They’re likely to be unhappy if they discover it on their own. And patients read every note nowadays, and it’s likely they’re going to be ticked off.” “What people understand are human error. What they don’t understand is lying.” 3.3.4. Clinician responsible for the error Many members of the breast cancer team felt it was much easier to own up to the error if they were personally responsible, but did not view it their place, nor fair, to judge another clinician who may have made an error.
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“What I know absolutely is I was not there. I cannot comment on an exam that I didn’t do that was done by another physician the previous year.” “I think I would be less likely to reveal someone else’s error. And maybe . . . I don’t know . . . but I just feel like because it’s not fair to them.” Participants noted that many medical errors are caused by system breakdowns, rather than due to one person’s negligence. Mammography exam images can be placed in the wrong chronological order, scheduling desks can fail to make follow-up appointment visits, and medications can be given in the wrong dose. It can be challenging to convey these system errors to patients without it sounded like no one is taking responsibility for what happened. “This is where we end up with miscommunications and patients are unhappy, because they feel like we dropped the ball globally.” 3.4. How do breast cancer care teams communicate pertinent information to the patient regarding diagnostic errors? The participants in our groups were thirsty for guidance on how to communicate diagnostic errors to their patients. “I’m hoping that this kind of research leads to more recommendations that are very specific about how do we train and what are the answers here.”
Our participants ranged in their comfort level on disclosing errors to patients, with some completely uncomfortable, to others wanting more guidance to increase their confidence, to a minority entirely confident with these sensitive discussions. Participants offered multiple suggestions for communicating with patients (Table 2), which clustered into the following: Suggestion 1) Educate the patient about the complexities of breast cancer diagnosis Many physicians preferred taking a preventive approach, educating their asymptomatic patients prospectively on the nuances of breast cancer screening and detection, effectively priming patients in case a new or recurrent cancer was to develop down the road. Some participants report they explicitly tell patients that “mammography is not perfect,” and that “a negative mammogram doesn’t mean you’re off the hook.” “I try to use the time I have before we know they have breast cancer to explain to them the limitations and the possibilities of mammography.” “‘This really didn’t stand out very much from everything else. But now it stands out more because it’s pulling on the tissue, or it’s gotten larger, or it’s distorting tissue, or there are new calcifications. And try to explain it along those lines.” In situations where a delayed diagnosis had occurred, participants were in agreement that disclosure should include patient education. Many physicians preferred to display the mammography examination images as a visual aid on a computer screen.
Table 2 Participant recommendations on communicating medical errors to patients. Recommendation
Participant Quote
1. Educate the patient
“That’s part of what I was saying about explaining the limitations of mammography because we’ve got moving targets here. There’s a spectrum on which cancer becomes identifiable. So when you’re trying to explain that kind of nuance, you only have so many hours in your day. And that’s why I like to take advantage to prospectively, when I have time to talk to patients, kind of say, ‘I’m happy to talk to you if you have questions.’” “I think it takes a fair amount of talking to somebody for them to understand how something can be there in the past and you don’t see it . . . . But now it stands out more because it’s pulling the tissue in or it’s gotten larger or it’s distorting tissue or there are new calcifications, and try to explain it along those lines. But it’s a fairly lengthy conversation once you embark on that.” “I tell every breast cancer patient I see when they say, ‘How long has this been here?’ And I say, ‘It’s been here for longer than it’s shown up on your mammogram. It could be there one year, two years, three years, four years, even before it showed up on your mammogram.’” “ . . . so you just have to take your lead from them. I think if they really are focused on that, then you have to try to kind of educate them without confusing the issue any more . . . sometimes it’s not only what you say but how you say it and try to put it . . . acknowledging their issue but not fanning the fires . . . ” “Certainly the best approach . . . and I hope that I would have the courage to do this . . . would be to say, ‘It was me, and I probably should have recommended a biopsy for you last year, but didn’t. I’m recommending one now and we should move forward with trying to get this treated. And if you want, I can show you the films.’” “You have to be honest. You cannot be reassuring. You cannot minimize what has happened. Because you only bring yourself into the realm of misinformation for that particular patient . . . if it was obviously there, you have to tell the patient it was obviously there.” “It’s a situation where you can honestly say, ‘In retrospect, yes, I can see your cancer.’ I try to reassure patients that most cancers in the breast don’t change very rapidly. So even if it were detected six months or a year earlier, probably their status would not be changed . . . .if that’s the truth, you have to just leave that with the patient.” “I will definitely say, ‘I made a mistake.’ Patients appreciate that, you know. ‘I made a mistake.’” “I don’t want them to feel any worse than they do. And they’re soul-searching. What did I do wrong to get this cancer? And I certainly don’t want to put that on them, so there is absolutely no value.” “When a surgeon gets a primary cancer to deal with, you don’t get a sad look on your face and communicate to the patient, ‘Well you’re going to die.’ What you do is, you be matter-of-fact, you explain that this looks like a curable cancer, we’re going to set up a plan for cure. And most people don’t die of breast cancer. There are other diseases, which you don’t have, like diabetes and heart disease that are worse, that you aren’t going to be cured of. And so you give them an optimistic note, and I think that makes a heck of a big difference.” “I am very positive and say, ‘Great that you came here to the radiology department breast center. And you’re in the right place, and we’re going to take really good care of you going forward.’ So I try to be brief about the assessment of the previous mammogram and then bring them to the present and the future and give them some positive reinforcement on actually being in the breast center.”
2. Be honest, with no concealment, and acknowledge feelings
3. Focus on the positive, the present and future, not the past
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“And then we’ll put up both films and we’ll look at them. And I’ll talk about how the radiologist looks at the films, and the difficulty of figuring out . . . what’s real, and how much easier it is to see once you know that something is there. And most of the time patients are both reassured and less anxious when you tell them about that. And we also talk about how long it takes for breast cancers to grow, and how long it takes for them to actually become visible.” Suggestion 2) Be honest, with no concealment, and acknowledge patient’s feelings To participants confident in disclosing errors, they believe “honesty is the best policy.” “I would absolutely tell them you made a mistake. And I think the upside of that is two things. One is credibility. Two is they know you make mistakes.” Participants felt strongly that honesty was first and foremost, and apologizing or demonstrating emotion was secondary. A few expressed the importance of “acknowledging the feeling.” “There’s an emotional component and you have to acknowledge that. ‘Hey, you’re angry, and there’s good reason to be angry.’ I think we have to acknowledge those feelings before they can get on with the logical issues as well.” Suggestion 3) Focus on the positive, the present and future, not the past Many participants felt it was important to take an optimistic slant, even congratulating the patients on their vigilance and selfadvocacy. “Yes, we can see it in the past. But then I focus on the future. I say ‘I’m really glad that you’re here, that you came in.’ I sort of give them credit for whatever event brought them in, whether they noticed a lump or came in for their screening mammogram. I am very positive and say ‘You’re in the right place, and we’re going to take really good care of you going forward.’ 4. Discussion and conclusion 4.1. Discussion Disclosing harmful medical errors to patients is a recognized ethical imperative that is patient-centered and contributes to the quality and safety of subsequent care [14]. In this study, the need to communicate with a patient about a potential error in the diagnosis of breast cancer posed barriers that experienced clinicians considered to be unique and complex. Some of these barriers related to the nature of breast cancer, with clinicians perceiving a heightened emotional tone and level of patient engagement relative to other cancers. Similarly, additional challenges were attributed to the difficulties in diagnosing breast cancer, which often makes it hard to know whether an error actually occurred and if so, who was responsible. Other barriers reflected the challenges of team-based cancer care with multiple specialists involved on the team. While some of these disclosure barriers have been identified in studies of other specialists’ attitudes [3,15,16], breast cancer diagnosis represents a “perfect storm” where the ultimate challenge stemmed from the fact that multiple disclosure barriers frequently occurred together. The challenges of navigating discussions with breast cancer patients about diagnostic errors prompted clinicians to adopt a variety of communication strategies, some of which aligned with current best practices more so than others. One especially promising suggestion involved conducting anticipatory discussions with patients about the
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limitations of current breast cancer diagnostic technologies. It is not known how best to balance enhanced informed consent with maintaining patients’ appreciation for the importance of screening and confidence in the quality of medical care. However, while some clinicians might prefer to “move on,” pushing patients to do so prematurely may strike patients as not fully acknowledging their distress. A truly patient-centered approach to communicating about diagnostic errors in breast cancer will follow the patient’s lead [17–19]. Another communication strategy endorsed by some focus group participants that is not aligned with current recommendations was potentially withholding information about a diagnostic error for the patient’s benefit. The use of “benevolent deception” in healthcare, similar to therapeutic privilege as a basis for withholding information about potential risks from patients during informed consent discussions, has been severely criticized by bioethicists and the courts [20]. Limited disclosure of harmful errors is also not aligned with current disclosure guidelines or what is known about patients’ disclosure preferences [4,21]. Many commentators have suggested that limited disclosure in these cases reflects clinicians projecting their own discomfort from a challenging discussion onto the preferences of the patients [22]. Yet the fact that these experienced, thoughtful breast cancer clinicians considered limited disclosure to be a viable option should prompt more research to understand the actual preferences of patients who have experienced a diagnostic error. Breast cancer patient-specific research could clarify patient expectations when a diagnostic error occurs, and inform clinicians on the actual amount of disclosure desired by patients. 4.2. This study has limitations Although these focus group participants were drawn from five different health care settings, the study design risks encouraging socially desirable responses to a potentially greater extent than individual interviews. In addition, professional hierarchies can inhibit contributions in inter-professional groups, and individuals may be reluctant to criticize colleagues or speak in front of supervisors. Further, each focus group was comprised of providers from a single organization, and participants may have sought to show loyalty to their organization. For these reasons, our findings may underestimate the challenges breast cancer providers experience communicating with patients about diagnostic errors. In addition, while the focus groups were conducted several years ago, there is no evidence to suggest that major changes in providers’ disclosure attitudes and experiences have occurred since the data was collected. 4.3. Conclusions Talking with patients about harmful errors is difficult under the best of circumstances. These breast cancer care providers felt that disclosing errors was uniquely challenging, and struggled with effective strategies. Additional research into the preferences of patients who have actually experienced errors in the diagnosis of breast cancer will be an important next step in designing and implementing training programs to ensure clinicians are meeting patients’ needs after these difficult events. Future research on effective strategies to help clinicians communicate more openly with patients about diagnostic errors is needed, including strategies aimed at tailoring the message to the preferences of the patient. 4.4. Practice implications Clinicians thirsty for suggestions on facilitating discussions about diagnostic errors may benefit from the themes provided
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herein. Providers have offered guidance surrounding educating the patient about the complexities of breast cancer diagnosis, honesty and acknowledgement of patients’ feelings, and optimistically focusing on the positive going forward with care. Declaration of Competing Interest The authors have no conflicts of interest to disclose. Role of Funding and Conflict of Interest This research was supported by a supplement to Award Number R01 CA107623-08 from the National Cancer Institute (JGE) and K05 CA104699 (JGE). The funding sources had no involvement in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the paper for publication. Acknowledgements The authors would like to thank Yasman Moshiri for her assistance with the qualitative analysis, Jim Brenner, MD for his assistance with recruitment, and Lauren Lipira for her assistance with manuscript preparation. References [1] R. Truog, D. Browning, J. Johnson, TH G, Talking With Patients and Families About Medical Error: a Guide for Education and Practice, Johns Hopkins University Press, Baltimore, 2010. [2] National Academies of Sciences E, and Medicine - Committee on Diagnostic Error in Health Care, Improving Diagnosis in Health Care, The National Academies Press, Washington, DC, 2015. [3] T.H. Gallagher, A.J. Cook, R.J. Brenner, et al., Disclosing harmful mammography errors to patients, Radiology 253 (2) (2009) 443–452. [4] K.M. Mazor, S.M. Greene, D. Roblin, et al., More than words: patients’ views on apology and disclosure when things go wrong in cancer care, Patient Educ. Couns. 90 (3) (2013) 341–346. [5] A.S. Saber Tehrani, H. Lee, S.C. Mathews, et al., 25-Year summary of US malpractice claims for diagnostic errors 1986-2010: an analysis from the National Practitioner Data Bank, BMJ Qual. Saf. 22 (8) (2013) 672–680.
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Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Communicating with patients about diagnostic errors in breast cancer care: Providers’ attitudes, experiences, and advice Lisa M. Reischa , Carolyn D. Proutyb , Joann G. Elmorec,* , Thomas H. Gallaghera a b c
Department of Medicine, University of Washington, Seattle, WA, USA The Evergreen State College, Olympia, WA, USA David Geffen School of Medicine at UCLA, Los Angeles, CA, USA
A R T I C L E I N F O
A B S T R A C T
Article history: Received 25 April 2019 Received in revised form 24 October 2019 Accepted 21 November 2019
Objective: To gain understanding of breast cancer care providers’ attitudes regarding communicating with patients about diagnostic errors, to inform interventions to improve patient- provider discussions. Methods: Focus groups were held in three U.S. states involving 41 breast cancer care providers from a variety of specialties. Discussions focused on providers’ experiences with potential errors in breast cancer diagnosis, communication with patients following three hypothetical diagnostic vignettes, and suggestions for how and why diagnostic errors in breast cancer care should be communicated. Transcripts were qualitatively analyzed. Results: Providers were more willing to inform breast cancer patients of a diagnostic error when they felt it would be helpful, when they felt responsible for the error, when they were less concerned about litigation, and when the patient asked directly. Conclusions: Breast cancer care providers experience several challenges when considering whether to inform a patient about diagnostic errors. A better understanding of patients’ preferences for open communication, combined with customized tools and training, could increase clinicians’ comfort with these difficult discussions. Practice implications: Providers gave suggestions to facilitate discussions about diagnostic errors when these events occur, including themes of education, honesty, and optimism. © 2019 Published by Elsevier B.V.
Keywords: Physician-patient communication Breast cancer Cancer care Medical errors Qualitative methods Focus groups
1. Introduction The importance of transparent and timely communication with patients following breakdowns in care is widely recognized [1].The recent National Academy of Medicine report Improving Diagnosis in Health Care drew special attention to the need for effective communication with patients following diagnostic errors. [2]. Open communication with patients about diagnostic errors has proven especially hard in cancer care [3,4]. Since most patients diagnosed with breast cancer have had multiple prior mammograms, it is natural for patients and providers to look back at these older films and wonder whether the cancer could have been diagnosed earlier. Delayed diagnosis of cancer is a common and costly source of malpractice litigation, which can make it difficult for providers to know what to say to patients when a breakdown in the diagnostic process occurs [5]. Cancer is a complex and
* Corresponding author at: University of California, Los Angeles 1100 Glendon Ave., Suite 900, Los Angeles, CA, 90024, USA. E-mail address: [email protected] (J.G. Elmore).
challenging disease to treat, and patients may feel exceptionally vulnerable, making communication tenuous, especially when care has gone wrong [6]. One survey of nearly 300 primary care physicians highlighted the challenges of communicating with cancer patients about diagnostic errors [7]. When responding to a hypothetical case involving a delayed diagnosis of cancer, over half reported they would not mention the delay to the patient unless she specifically inquired. There are multiple reasons why a gap between expectations for disclosure and current practice has persisted, ranging from provider fear and embarrassment to inadequate institutional support [8]. Breakdowns in the disclosure process exacerbate patients’ suffering and inhibit the ability of healthcare institutions to learn from what happened and improve quality [9,10]. While such surveys can provide helpful quantitative information regarding how providers might respond to such challenging situations, they offer limited insights into what providers would say to patients and as well as the why, namely the factors motivating providers’ responses. In addition, few prior studies have included the full range of providers who care for breast cancer patients, nor focused on the issue of communicating with patients
https://doi.org/10.1016/j.pec.2019.11.022 0738-3991/© 2019 Published by Elsevier B.V.
Please cite this article in press as: L.M. Reisch, et al., Communicating with patients about diagnostic errors in breast cancer care: Providers’ attitudes, experiences, and advice, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.11.022
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about diagnostic errors, information that will be important for interventions to improve communication [11]. Therefore, we conducted a series of focus groups with cancer care providers across a variety of clinical sub-specialties and professions to explore how the specific setting of breast cancer diagnosis influences the nature of medical errors, as well as whether and how these errors are communicated to patients. 2. Methods 2.1. Recruitment and participation Participants were recruited by email from five healthcare organizations in Washington, California, and Oregon. All invitees were involved in the screening, diagnosis, treatment or survivorship of breast cancer. One-hour audiotaped focus groups were held between 2008 and 2011. Participants signed informed consent forms prior to the discussion and received $150 for their participation. All procedures were HIPAA compliant, and approval was obtained from University of Washington and University of California San Francisco Institutional Review Boards.
Table 1 Demographics of Focus Group Participants. Providers
N
Valid %
Total Sex (female) Age Years since licensure Provider type Primary care physician Radiologist Medical/radiation oncologist Surgeon Pathologist Other, non-MD (RN, NP, genetic counselor)
41 29
100 70.7
Years (mean)
51.0 24.6 6 11 10 10 1 3
14.6 26.8 24.4 24.4 2.4 7.3
the meaning of specific passages. Next, two investigators (LR, YM) re-read the transcripts to code the frequency of themes and identify quotations exemplifying themes that had emerged. Frequently occurring themes that recurred in at least three of the five groups are presented herein. Evaluation of the transcripts revealed thematic saturation had been achieved by the fourth group.
2.2. Discussion guide 3. Results Two investigators (TG, LR) co-facilitated each of the five groups using a discussion guide developed by the authors. Discussions began with an explanation of the difference between an adverse event (“any harm that is caused by medical management and that results in measurable disability”) and a medical error (“the failure of a planned action to be completed as intended, or the use of a wrong plan to achieve an aim”) [12]. Next, participants discussed three hypothetical vignettes designed to represent standardized situations of: A. Appropriate care; B. Adverse event with no error; and C. Diagnostic error (see Box 1 for full vignettes). The focus groups concluded by discussing barriers to communicating with patients about potential errors in breast cancer diagnosis and suggestions for improvement. 2.3. Analysis Audio-recordings were transcribed verbatim for qualitative analysis. We conducted iterative rounds of analysis using immersion-crystallization techniques to come to joint agreement on key themes [13]. Initially, two investigators (LR, CP) independently reviewed the transcripts to develop a list of key themes from the discussions and then met to resolve differences of opinion about
3.1. Participants Each group consisted of 5–11 participants, including both men and women, with diverse medical backgrounds related to breast care (total N = 41; see Table 1). Specialty fields included internal medicine/primary care, radiology, medical oncology, radiation oncology, surgery, pathology, and other related fields such as genetic counseling and nursing. 3.1.1. Challenges related to breast cancer diagnosis and the patient population Participants expressed that medical errors related to breast cancer diagnosis posed unique communication challenges. These disease-specific issues began with the gender of the majority of their patients. “The patients are more challenging. Women take care of everything, right? They take care of their entire family, they work, they do everything. They’re multi- taskers. So they handle their health care the same way. That complexity then adds many more little points in the event line of the woman’s care to have errors, to have adverse outcomes or to have side effects.”
Box 1. Vignettes
A. Appropriate Care
Vignette A patient has been recently diagnosed with cancer. There is a lesion visible on prior film, but the quality of her care has been good. The patient wants to know whether there was a delay in the diagnosis of her cancer.
B. Adverse event with no error
A patient comes in with a lump you think is associated with her menstrual cycle. You recommend she come back for a recheck. She does not do that, but comes in 3 months later for another reason. She neglects to mention the lump and you forget to recheck the lump. She is diagnosed with breast cancer 12 months later.
C. Diagnostic error
You are a radiologist reviewing a diagnostic mammogram for a new palpable lump. The films show an obvious malignant lesion. You realize a mistake was made in your prior interpretation of this woman’s last screening mammogram. Prior films had apparently been put up in reverse order, and you mistakenly concluded that the calcifications were decreasing in number when they were actually increasing. Your prior incorrect interpretation has resulted in a delayed diagnosis.
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Participants noted that there was considerable “hype” in breast cancer, which they attributed to media “bling factor” surrounding breast cancer and early detection. “We’ve got the Race for the Cure, you’ve got pink hats, you’ve got pink stuff. I mean, nobody’s wearing their ‘I have colon cancer’ t-shirts and tennis shoes and bracelets and all that. And Ralph Lauren’s now got his purse for breast cancer. And we never even get the colon cancer purse. And it’s crazy. What you’ve done now is you’ve increased anxiety to a whole new level in these patients.” Due to patient anxiety and media-induced “hysteria”, breast patients were described as being more challenging to communicate with. Participants believed that the prospect of broaching a sensitive topic such as a delayed cancer diagnosis with a highly anxious patient population was a challenging conundrum. 3.2. Adverse events and medical errors Participants believed that an additional challenge in breast cancer diagnosis was determining what constituted a “true” error. Due to the nature of cancer growth, participants noted it is often impossible to tell in retrospect if the cancer could have been diagnosed earlier. Also, if a cancer was diagnosed within a 6-month follow-up period, participants did not consider this delayed diagnosis to be a medical error but rather within the standard of practice. “I would say that missing a lesion is an adverse event, but it is not a medical error. If you fail to appreciate that you missed the target, that becomes a medical error. And if, in fact, you miss a diagnosis of a cancer, now you have a preventable adverse event, meaning delay of the diagnosis of breast cancer.” A definitive “clear-cut” delay in diagnosis, such as a missed cancer which should have been seen prospectively (not just in retrospect), was considered by participants to be a true medical error (rather than an adverse event). Yet some participants argued that missing a cancer on a film did not even fit the criteria for an adverse event, described as “that’s biology.” Given this back-drop of the complexities involved with this patient population, focus group participants considered two questions (noted below), and several themes emerged: 3.3. What do physicians consider when deciding whether to disclose potential diagnostic errors in breast cancer care to their patients? 3.3.1. Disclosure as helpful vs. harmful Participants expressed the belief that health care providers cannot predict whether patients are happier learning of a medical error, or happier being sheltered from this information. Participants were concerned that disclosing this sensitive information may “heap more suffering” on the patients, stating beliefs such as “I don’t want to make them feel any worse than they do.” “When you’re initially hitting this person with, you’ve got an abnormality that may be a breast cancer and we need to biopsy it, I just don’t understand why you would say to somebody, ‘and by the way, it was there last year and we should have done this last year.’” A few participants went so far as to assert that patients do not require honesty. “Should we go to a Perry Mason absolute truth? The answer is no.” One physician stated, in response to the “clear-cut” diagnostic error hypothetical vignette,
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“I don’t think you do it with anybody. I think all you say is “this represents a change since the prior exam.” Others, however, believed disclosure was contingent upon the level of physical and psychological harm disclosure might cause to the patient. If the error did not cause harm to the patient, many participants believed they could leave well enough alone. “Do you have the right to inflict pain on her potentially, unsolicited? I still think that’s wrong.” “I just don’t understand why you would say to somebody, ‘and by the way it was there last year and we should have done this last year.’ I just think it’s information that they’re on overload at this point.” 3.3.2. Fear of litigation To complicate matters, participants agreed that breast care practices are strongly influenced by the high cost of litigation. Concern about litigation made some participants more comfortable with disclosure and other participants less comfortable. Those who supported disclosing diagnostic errors in breast cancer care felt patients were less likely to be angry and sue if their doctor carefully and truthfully disclosed an error. They believed emphatically that patients who are “blown off” and then discover the truth on their own are the most angry. “You need to be as transparent as possible, because the patients during this time, they’re hyper aware in terms of whether you’re trying to hide something. If you’re just completely open, right away you’ve established a good rapport, which is what pushes the malpractice issue often completely off the table.” Other participants believed disclosure of a clear-cut error would invite a lawsuit. “What we’re trying to do is prevent a lawsuit, by only dictating the current report. And the buzzword that’s used is there is ‘an evolving density’.” 3.3.3. Patient inquisitiveness Many participants believed they would reserve disclosure for cases where the patient was specifically inquiring. “I think the patient can ask, if she wants to know.” “The patient will choose to either know that information or not.” Some participants felt strongly that their job was not to “stir the pot” by volunteering information. “You can absolutely kick a hornet’s nest.” “And when you way causing harm to the patient, what one patient might really want to know the other has no interest in. And you need to be really sensitive to what it is, where they are, and bringing them along.” Others would disclose if they felt the patient would ultimately discover the medical error on their own, creating a much more volatile situation. “They’re likely to be unhappy if they discover it on their own. And patients read every note nowadays, and it’s likely they’re going to be ticked off.” “What people understand are human error. What they don’t understand is lying.” 3.3.4. Clinician responsible for the error Many members of the breast cancer team felt it was much easier to own up to the error if they were personally responsible, but did not view it their place, nor fair, to judge another clinician who may have made an error.
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“What I know absolutely is I was not there. I cannot comment on an exam that I didn’t do that was done by another physician the previous year.” “I think I would be less likely to reveal someone else’s error. And maybe . . . I don’t know . . . but I just feel like because it’s not fair to them.” Participants noted that many medical errors are caused by system breakdowns, rather than due to one person’s negligence. Mammography exam images can be placed in the wrong chronological order, scheduling desks can fail to make follow-up appointment visits, and medications can be given in the wrong dose. It can be challenging to convey these system errors to patients without it sounded like no one is taking responsibility for what happened. “This is where we end up with miscommunications and patients are unhappy, because they feel like we dropped the ball globally.” 3.4. How do breast cancer care teams communicate pertinent information to the patient regarding diagnostic errors? The participants in our groups were thirsty for guidance on how to communicate diagnostic errors to their patients. “I’m hoping that this kind of research leads to more recommendations that are very specific about how do we train and what are the answers here.”
Our participants ranged in their comfort level on disclosing errors to patients, with some completely uncomfortable, to others wanting more guidance to increase their confidence, to a minority entirely confident with these sensitive discussions. Participants offered multiple suggestions for communicating with patients (Table 2), which clustered into the following: Suggestion 1) Educate the patient about the complexities of breast cancer diagnosis Many physicians preferred taking a preventive approach, educating their asymptomatic patients prospectively on the nuances of breast cancer screening and detection, effectively priming patients in case a new or recurrent cancer was to develop down the road. Some participants report they explicitly tell patients that “mammography is not perfect,” and that “a negative mammogram doesn’t mean you’re off the hook.” “I try to use the time I have before we know they have breast cancer to explain to them the limitations and the possibilities of mammography.” “‘This really didn’t stand out very much from everything else. But now it stands out more because it’s pulling on the tissue, or it’s gotten larger, or it’s distorting tissue, or there are new calcifications. And try to explain it along those lines.” In situations where a delayed diagnosis had occurred, participants were in agreement that disclosure should include patient education. Many physicians preferred to display the mammography examination images as a visual aid on a computer screen.
Table 2 Participant recommendations on communicating medical errors to patients. Recommendation
Participant Quote
1. Educate the patient
“That’s part of what I was saying about explaining the limitations of mammography because we’ve got moving targets here. There’s a spectrum on which cancer becomes identifiable. So when you’re trying to explain that kind of nuance, you only have so many hours in your day. And that’s why I like to take advantage to prospectively, when I have time to talk to patients, kind of say, ‘I’m happy to talk to you if you have questions.’” “I think it takes a fair amount of talking to somebody for them to understand how something can be there in the past and you don’t see it . . . . But now it stands out more because it’s pulling the tissue in or it’s gotten larger or it’s distorting tissue or there are new calcifications, and try to explain it along those lines. But it’s a fairly lengthy conversation once you embark on that.” “I tell every breast cancer patient I see when they say, ‘How long has this been here?’ And I say, ‘It’s been here for longer than it’s shown up on your mammogram. It could be there one year, two years, three years, four years, even before it showed up on your mammogram.’” “ . . . so you just have to take your lead from them. I think if they really are focused on that, then you have to try to kind of educate them without confusing the issue any more . . . sometimes it’s not only what you say but how you say it and try to put it . . . acknowledging their issue but not fanning the fires . . . ” “Certainly the best approach . . . and I hope that I would have the courage to do this . . . would be to say, ‘It was me, and I probably should have recommended a biopsy for you last year, but didn’t. I’m recommending one now and we should move forward with trying to get this treated. And if you want, I can show you the films.’” “You have to be honest. You cannot be reassuring. You cannot minimize what has happened. Because you only bring yourself into the realm of misinformation for that particular patient . . . if it was obviously there, you have to tell the patient it was obviously there.” “It’s a situation where you can honestly say, ‘In retrospect, yes, I can see your cancer.’ I try to reassure patients that most cancers in the breast don’t change very rapidly. So even if it were detected six months or a year earlier, probably their status would not be changed . . . .if that’s the truth, you have to just leave that with the patient.” “I will definitely say, ‘I made a mistake.’ Patients appreciate that, you know. ‘I made a mistake.’” “I don’t want them to feel any worse than they do. And they’re soul-searching. What did I do wrong to get this cancer? And I certainly don’t want to put that on them, so there is absolutely no value.” “When a surgeon gets a primary cancer to deal with, you don’t get a sad look on your face and communicate to the patient, ‘Well you’re going to die.’ What you do is, you be matter-of-fact, you explain that this looks like a curable cancer, we’re going to set up a plan for cure. And most people don’t die of breast cancer. There are other diseases, which you don’t have, like diabetes and heart disease that are worse, that you aren’t going to be cured of. And so you give them an optimistic note, and I think that makes a heck of a big difference.” “I am very positive and say, ‘Great that you came here to the radiology department breast center. And you’re in the right place, and we’re going to take really good care of you going forward.’ So I try to be brief about the assessment of the previous mammogram and then bring them to the present and the future and give them some positive reinforcement on actually being in the breast center.”
2. Be honest, with no concealment, and acknowledge feelings
3. Focus on the positive, the present and future, not the past
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“And then we’ll put up both films and we’ll look at them. And I’ll talk about how the radiologist looks at the films, and the difficulty of figuring out . . . what’s real, and how much easier it is to see once you know that something is there. And most of the time patients are both reassured and less anxious when you tell them about that. And we also talk about how long it takes for breast cancers to grow, and how long it takes for them to actually become visible.” Suggestion 2) Be honest, with no concealment, and acknowledge patient’s feelings To participants confident in disclosing errors, they believe “honesty is the best policy.” “I would absolutely tell them you made a mistake. And I think the upside of that is two things. One is credibility. Two is they know you make mistakes.” Participants felt strongly that honesty was first and foremost, and apologizing or demonstrating emotion was secondary. A few expressed the importance of “acknowledging the feeling.” “There’s an emotional component and you have to acknowledge that. ‘Hey, you’re angry, and there’s good reason to be angry.’ I think we have to acknowledge those feelings before they can get on with the logical issues as well.” Suggestion 3) Focus on the positive, the present and future, not the past Many participants felt it was important to take an optimistic slant, even congratulating the patients on their vigilance and selfadvocacy. “Yes, we can see it in the past. But then I focus on the future. I say ‘I’m really glad that you’re here, that you came in.’ I sort of give them credit for whatever event brought them in, whether they noticed a lump or came in for their screening mammogram. I am very positive and say ‘You’re in the right place, and we’re going to take really good care of you going forward.’ 4. Discussion and conclusion 4.1. Discussion Disclosing harmful medical errors to patients is a recognized ethical imperative that is patient-centered and contributes to the quality and safety of subsequent care [14]. In this study, the need to communicate with a patient about a potential error in the diagnosis of breast cancer posed barriers that experienced clinicians considered to be unique and complex. Some of these barriers related to the nature of breast cancer, with clinicians perceiving a heightened emotional tone and level of patient engagement relative to other cancers. Similarly, additional challenges were attributed to the difficulties in diagnosing breast cancer, which often makes it hard to know whether an error actually occurred and if so, who was responsible. Other barriers reflected the challenges of team-based cancer care with multiple specialists involved on the team. While some of these disclosure barriers have been identified in studies of other specialists’ attitudes [3,15,16], breast cancer diagnosis represents a “perfect storm” where the ultimate challenge stemmed from the fact that multiple disclosure barriers frequently occurred together. The challenges of navigating discussions with breast cancer patients about diagnostic errors prompted clinicians to adopt a variety of communication strategies, some of which aligned with current best practices more so than others. One especially promising suggestion involved conducting anticipatory discussions with patients about the
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limitations of current breast cancer diagnostic technologies. It is not known how best to balance enhanced informed consent with maintaining patients’ appreciation for the importance of screening and confidence in the quality of medical care. However, while some clinicians might prefer to “move on,” pushing patients to do so prematurely may strike patients as not fully acknowledging their distress. A truly patient-centered approach to communicating about diagnostic errors in breast cancer will follow the patient’s lead [17–19]. Another communication strategy endorsed by some focus group participants that is not aligned with current recommendations was potentially withholding information about a diagnostic error for the patient’s benefit. The use of “benevolent deception” in healthcare, similar to therapeutic privilege as a basis for withholding information about potential risks from patients during informed consent discussions, has been severely criticized by bioethicists and the courts [20]. Limited disclosure of harmful errors is also not aligned with current disclosure guidelines or what is known about patients’ disclosure preferences [4,21]. Many commentators have suggested that limited disclosure in these cases reflects clinicians projecting their own discomfort from a challenging discussion onto the preferences of the patients [22]. Yet the fact that these experienced, thoughtful breast cancer clinicians considered limited disclosure to be a viable option should prompt more research to understand the actual preferences of patients who have experienced a diagnostic error. Breast cancer patient-specific research could clarify patient expectations when a diagnostic error occurs, and inform clinicians on the actual amount of disclosure desired by patients. 4.2. This study has limitations Although these focus group participants were drawn from five different health care settings, the study design risks encouraging socially desirable responses to a potentially greater extent than individual interviews. In addition, professional hierarchies can inhibit contributions in inter-professional groups, and individuals may be reluctant to criticize colleagues or speak in front of supervisors. Further, each focus group was comprised of providers from a single organization, and participants may have sought to show loyalty to their organization. For these reasons, our findings may underestimate the challenges breast cancer providers experience communicating with patients about diagnostic errors. In addition, while the focus groups were conducted several years ago, there is no evidence to suggest that major changes in providers’ disclosure attitudes and experiences have occurred since the data was collected. 4.3. Conclusions Talking with patients about harmful errors is difficult under the best of circumstances. These breast cancer care providers felt that disclosing errors was uniquely challenging, and struggled with effective strategies. Additional research into the preferences of patients who have actually experienced errors in the diagnosis of breast cancer will be an important next step in designing and implementing training programs to ensure clinicians are meeting patients’ needs after these difficult events. Future research on effective strategies to help clinicians communicate more openly with patients about diagnostic errors is needed, including strategies aimed at tailoring the message to the preferences of the patient. 4.4. Practice implications Clinicians thirsty for suggestions on facilitating discussions about diagnostic errors may benefit from the themes provided
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herein. Providers have offered guidance surrounding educating the patient about the complexities of breast cancer diagnosis, honesty and acknowledgement of patients’ feelings, and optimistically focusing on the positive going forward with care. Declaration of Competing Interest The authors have no conflicts of interest to disclose. Role of Funding and Conflict of Interest This research was supported by a supplement to Award Number R01 CA107623-08 from the National Cancer Institute (JGE) and K05 CA104699 (JGE). The funding sources had no involvement in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the paper for publication. Acknowledgements The authors would like to thank Yasman Moshiri for her assistance with the qualitative analysis, Jim Brenner, MD for his assistance with recruitment, and Lauren Lipira for her assistance with manuscript preparation. References [1] R. Truog, D. Browning, J. Johnson, TH G, Talking With Patients and Families About Medical Error: a Guide for Education and Practice, Johns Hopkins University Press, Baltimore, 2010. [2] National Academies of Sciences E, and Medicine - Committee on Diagnostic Error in Health Care, Improving Diagnosis in Health Care, The National Academies Press, Washington, DC, 2015. [3] T.H. Gallagher, A.J. Cook, R.J. Brenner, et al., Disclosing harmful mammography errors to patients, Radiology 253 (2) (2009) 443–452. [4] K.M. Mazor, S.M. Greene, D. Roblin, et al., More than words: patients’ views on apology and disclosure when things go wrong in cancer care, Patient Educ. Couns. 90 (3) (2013) 341–346. [5] A.S. Saber Tehrani, H. Lee, S.C. Mathews, et al., 25-Year summary of US malpractice claims for diagnostic errors 1986-2010: an analysis from the National Practitioner Data Bank, BMJ Qual. Saf. 22 (8) (2013) 672–680.
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Please cite this article in press as: L.M. Reisch, et al., Communicating with patients about diagnostic errors in breast cancer care: Providers’ attitudes, experiences, and advice, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.11.022