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The victims of medical error reach far beyond the patient. The aftermath forever changes the lives of the patient’s family and physician alike. We explore the life and death of nineteen-year-old Matt, a stellar athlete and better son, and the cognitive bias that led to an unfortunate and consequential medical misdiagnosis. This story is one of family heartbreak, the harsh reality of second victim phe- nomenon, and ultimately lessons learned in compassion, vigilance, and candidness for the health care industry. We share this tragedy with the medical community in hopes that we improve the use of post-mortems, transparency and disclosure to heal the wounds of our patients’ families. Key words: adverse events, medical errors, human factors, patient-provider communication/information, ethics ‘Not a day passes when I don’t think of Matt, his giddy, upbeat atti- would impact everyone involved from family to physician (Fig. 1). This tude and the relentless work ethic that was admired and revered by story is one of family heartbreak, the harsh reality of second victim friends and teammates alike. I always wish he were still here with phenomenon, and ultimately lessons learned in compassion, vigilance me enjoying his sophomore year of college. All of my memories that and transparency for the health care industry. day before he collapsed provide me with something tangible, some- thing realtoholddear to myheart… But in an agonizing instant, as the basketball ricocheted off the rim and Matt helplessly fell to the Case presentation asphalt, I knew my life would never be the same.’ Spence Miller Immediately following the syncopal event (loss of consciousness), Matt underwent cardiac, pulmonary and neurologic exams by para- One year later, a best friend’s tribute to Matt ’02, The Daily medics. His vital signs were normal and no abnormalities were Princetonian found. Etiologies proposed included stress, exhaustion, hypogly- cemia, dehydration as well as neurologic or electrolyte abnormal- ities. Matt had not experienced an episode like this before except Introduction may be when he ‘dosed off’ unexpectedly in the passenger seat of a Nineteen-year-old Matt, a Princeton freshman, had just swum a dis- car years earlier. Matt’s father discussed the event with a family tance race at the Ivy League Championship meet at Harvard, the physician. The physician agreed that it was not essential to visit an school his twin sister attended. Shortly thereafter, he lost con- emergency facility in Boston but to return home. sciousness in the cool down pool while doing a gentle backstroke. Two weeks after the initial incident, Matt was seen by a cardi- He was pulled from the pool, regained consciousness and denied ologist/electrophysiologist and underwent an electrocardiogram any memory of the event. He was diagnosed with neurocardiogenic (EKG), echocardiogram (ECHO), stress test and tilt table test. The syncope and told to resume all activities without restriction. Two weeks cardiologist determined that Matt had a ‘normal athlete’s heart’ and later, Matt would die suddenly from ventricular arrhythmia, a serious diagnosed him with neurocardiogenic syncope, a temporary loss of cardiac rhythm disturbance that could have been prevented. A search consciousness associated with a drop in arterial blood pressure, for the truth and legal review would create a rippling aftermath that quickly followed by a slowed heart rate. He was advised to increase Published by Oxford University Press in association with the International Society for Quality in Health Care 2018. This work is written by (a) US Government employee(s) and is in the public domain in the US. 654 Downloaded from https://academic.oup.com/intqhc/article/30/8/654/4978114 by DeepDyve user on 13 July 2022 Matt’s story � Patient-centred care 655 Family Matt Cardiologist Neuro cardiogenic Syncope EKG, ECHO, stress test, tilt table test, Case Normal heart; no restrictions “neurocardiogenic” Presentation Cardiac Arrest Death Matt’s twin sister and brother evaluated Medical Examiner: Postmortem Review at Penn Diagnosis: cause of death was ventricular Postmortem arrythmia resulting from substrate of Events dilated cardiomyopathy Lawyer recommended medical error, Death Certificate negligence, and medical malpractice Litigation In the search for the “truth,” the legal Deny and Defend process was the only option Seeking disclosure of facts and Feelings of grief, shame, embarrassment, accountability and isolation Legal 3 Years Relocation, financial failure, and debt New normal: depositions, meetings Proceedings Unnatural process: feelings of isolation, Distress shame, embarrassment, and anger Acceptance Legal Settlement (no medical settlement) Acceptance No closure therefore questions remained The Second Request meeting with cardiologist Death Victim Figure 1. Flowchart outlining events as experienced by Matt, his family, and his cardiologist. his salt intake and water consumption and was prescribed Fluorinef recommendation for follow-up evaluation or appointment. Matt’s tablets, a corticosteroid used to regulate blood pressure and blood father repeatedly asked if he should restrict activity and if his son’s salt level (with the potential side effect of arrhythmia). There was no condition was life-threatening but the physician assured him there Downloaded from https://academic.oup.com/intqhc/article/30/8/654/4978114 by DeepDyve user on 13 July 2022 656 Miller and Dastoli was no signs of a serious underlying medical condition. Aware that Legal proceedings Matt was an elite athlete, the doctor advised Matt to resume all The family was advised by the consulting cardiologist to contact an activities without restriction. attorney and proceed with litigation. Matt’s parents became plain- Matt returned to school that day, attended class and participated tiffs and entered into their new world of medical malpractice as in his normal athletic training and swimming activities. That same active participants in the suit. They spoke to and through their attor- afternoon, while playing basketball with fellow swim teammates, he neys, fragmenting and compartmentalizing their lives. The legal pro- ‘dropped’ forward, without apparent warning and with enough ceedings were long, arduous and tedious as Matt’s parents focused force to break his teeth in the fall. Resuscitation efforts were started all of their energy and attention into the search for the truth of at the scene and continued En route to the hospital, a short distance Matt’s death. The journey to ﬁnd justice for their son lasted 3 years from the Princeton campus. Matt’s parents and cardiologist were and tested their patience and loyalty. The time devoted to legal notiﬁed. The cardiologist spoke with the treating Emergency activity and trial preparations resulted in physical and mental Department physician, recommending the immediate administration exhaustion, with their ‘legal lives’ playing a prominent role in their of beta blockers, altering his initial diagnosis from a neurologic new normal lives. The process was draining. Fairness, understand- benign condition to a life-threatening cardiac one. All efforts to save ing, acceptance and forgiveness were core family values, therefore Matt were unsuccessful. There was an overwhelming feeling of dis- the need to maintain anger, necessary to provide fuel and maintain belief as nobody knew exactly why or how his death occurred. The focus in the case, was exhausting and unnatural for them. The eco- Princeton campus was overcome of grief. Students reﬂected on their nomic value and sympathetic nature of the case provided a clear memories with Matt and honored his life and individuality in the incentive for the legal proceedings, but the goals and desired out- Princetonian 25 March 1999. comes were not well aligned. They trusted that in the end, full dis- closure of facts and accountability would be established, providing them closure and the answers they so desperately deserved. Matt’s parents were required to work with attorneys while all Post-mortem events continued to believe Matt was harmed by his physician. The silence Matt’s family had many questions but no answers. The initial diag- of the physician and his failure to contact the parents was inter- nosis, neurologic in nature, did not match the fatal cardiac event preted as ‘a failure to care’ or possibly as an attempt to hide his that had just occurred. Based on the circumstances, sudden unex- error. The physician’s life and his relocated practice seemed to indi- pected death, the medical examiner was called for independent cate success and happiness. They were disappointed by the physician evaluation. The post-mortem examination is the systematic examin- and were forced to ask themselves: ‘why had he not contacted ation of the dead for medical and legal purposes. It is the gold stand- them?’; ‘did he care?’; ‘did he suffer?’; ‘was he a bad doctor?’; ‘was ard for establishing the cause of death. And the cause of death is he impaired?’; ‘were they wrong to have trusted him?’; ‘had they deﬁned as the primary disease or injury responsible for the death. failed their son?’ The signiﬁcance is crucial as without a post-mortem, a death certiﬁ- Despite unanswered questions and lingering uncertainty, Matt’s cate will only reﬂect and repeat pre-mortem thoughts. Physicians are family accepted a conﬁdential, legal settlement; but there was no often at a loss why a patient they have cared for has died. They medical settlement to provide resolution. The legal system may have would like to establish what went wrong, hence the need for an served the family with ‘settlement’, but the medical system clearly audit, and a post-mortem is a powerful audit tool. failed. This was compounded by the failure to communicate harm The post-mortem review revealed a massive cardiac enlarge- caused by diagnostic medical error. Matt’s family believed that there ment (cardiomegaly). The cause of death was determined to be should have been a promise of ongoing communication, an early ventricular arrhythmia, resulting from the substrate of dilated car- disclosure of the facts as known and an apology with expression of diomyopathy, a disease of the heart muscle. Since the condition is sympathy should have been offered. congenital, Matt’s parents were warned about the possibility of a similar event in their surviving children, both competitive endur- ance swimmers. Matt’s younger brother and twin sister underwent Investigating the medical error cardiology evaluations to assess their risk for cardiac complica- tions and the risk of sudden death. Fortunately, both had normal The EKG, ECHO, stress test and tilt table test were reviewed retro- cardiology evaluations, neither displaying signs nor symptoms of spectively and all the ﬁndings were considered grossly abnormal. cardiomyopathy. The results should have led a reasonable cardiologist, acting within Results of the post-mortem were communicated to Matt’s cardi- the standard of care, to make the correct diagnosis. The cardiologist ologist indicating a clear error in the original diagnosis of neurocar- should have advised the patient and his parents about the signiﬁ- diogenic syncope. Consulting cardiologists considered the failure of cance of the diagnosis and recommended appropriate management the cardiologist to establish the correct diagnosis of the cause of the to avoid harm and death. Matt’s physician misinterpreted the syncopal episode and the failure to correctly interpret medical stud- ECHO and attributed chamber enlargement to be consistent with ies a breach of medical standard of care. Those physicians believed ﬁndings in an athlete’s heart. The discrepancies noted on the initial that failure to establish the correct diagnosis and make appropriate EKG were ‘normalized’ during the stress test. Unfortunately, a posi- recommendations led to Matt’s death. Matt’s cardiologist was tive tilt table is consistent with neurologic syncope, but also consist- shocked, distraught and overwhelmed with grief. He never con- ent with cardiomyopathy. It was the strongly positive and dramatic tacted the family directly. Following no communication with any tilt table test results that created his anchoring bias, an over-reliance colleagues, he left his medical practice to relocate to Florida. When that led to an incorrect diagnosis. applying for malpractice insurance in the state of Florida, the cardi- This highly regarded, caring, exceptionally well-trained and com- ologist reported that there were no outstanding lawsuits against his petent cardiologist made a fatal error. He failed to diagnose cardio- license. myopathy in his patient who had suffered a syncopal event Downloaded from https://academic.oup.com/intqhc/article/30/8/654/4978114 by DeepDyve user on 13 July 2022 Matt’s story � Patient-centred care 657 following exercise. This error led to the incorrect diagnosis and the Medical mistakes that can lead to death range from surgical failure to make appropriate recommendations for treatment and complications that go unrecognized to mix-ups with the doses or activity restrictions. If Matt had received aggressive treatment, types of medications patients receive. An extensive body of research appropriate follow-up, and had accepted the required limitations of indicates that diagnostic error accounts for a large percentage of activity, it was likely that his death could have been prevented. preventable error. Furthermore, subtle cognitive bias in the clini- Furthermore, had Matt known the true diagnosis and informed his cians’ thought process plays a role in many diagnostic errors, includ- classmates, they may have responded differently during the tragic ing those associated with failures in perception, failed heuristics and event. bias in decision making. The tendency to frame a diagnosis around a single piece of information, explaining away other diagnoses, is common, demonstrating the fallibility of being human. It relates to The second victim the much-discussed concept of anchoring, a cognitive predisposition that explains the willingness to accept a patient’s diagnosis without Matt’s father needed to meet with his son’s cardiologist face to face. further thought. Minimizing cognitive errors, speciﬁcally the biases He was seeking accountability and wanted only to know that he did that underlie them, are critical in preventing such errors. not hurt his son. His father was not seeking explanations, details or The ﬁrst misstep was the dismissal of the lethal diagnosis of car- facts. He did not want excuses, punishment or apology. Matt’s diomyopathy, closely followed by the anchoring of a syncope diag- father had trusted the physician and believed the doctor’s words nosis. After harm occurs, secondary to medical error, full disclosure that Matt’s heart was normal, and he had no restrictions on activ- is essential. The disclosure of medical error is a professional and eth- ities. At the time, he was relieved and grateful for the diagnosis. ical responsibility with the duty imposed on all physicians. Medical Before Matt’s father could ﬁnally meet with the cardiologist, a meet- error which results in death demands that the physician reports the ing he so desperately needed, an announcement was made: Matt’s facts known in a timely manner. In addition to early disclosure, cardiologist committed suicide. His obituary stated that he died communication resolution must be a goal. The failure to disclose ‘suddenly and unexpectedly’ at home and was survived by his two Matt’s medical error was fatal and unforgivable. Matt’s life and children. Matt’s parents wept upon receiving the news. It is more death became ‘the case’, and the cause of action was medical mal- likely than not that the sorrow was shared by all who had truly practice. While they arrived at a legal settlement the case concluded, loved and cared for Matt. Matt’s family has no resolution and no deﬁnitive end to their ques- tions about Matt’s death. Matt’s parents lost the title of plaintiffs. Their son’s doctor lost the title of defendant. However, they were Discussion still injured parents needing a resolution. There are questions that When a death is likely preventable—as in misdiagnosis, suicide and may be raised as to why doctors are not communicating thoroughly industrial accidents—the survivors must deal with special challenges with patients and the patients’ family. Further studies into cases that impede healing. The challenge is especially difﬁcult when the similar to Matt’s will emphasize the negative effects of cognitive bias death is sudden and unexpected. It challenges our ideas of rightness and the untold harm associated with a failure to disclose. These and wrongness in life. Matt was a son, brother, friend, classmate studies can increase awareness of errors that can lead to medical and teammate. Those that had the privilege of knowing him express malpractice and a negative consequence for the patient, the patient’s how much they will miss the comfort and conﬁdence that Matt pro- family and the physician. vided. The lives of all those who knew Matt had changed forever. The wisdom and cheerfulness that Matt carried with him will no Acknowledgements longer be expressed on the Princeton campus or in his household. ‘A Silent Goodbye,’ written by Matt’s teammate, expresses the emo- The authors would like to thank Matt’s parents for their permission and sup- tional trauma that is felt by all who had known Matt. port in sharing their son’s story.
International Journal for Quality in Health Care – Oxford University Press
Published: Oct 1, 2018
Keywords: medical errors; disclosure; second victim experience; cognitive bias; misdiagnosis; athlete; compassion; transparency; adverse event; human factors engineering; community; ethics
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