The following report highlights patient and family perspectives of adverse events that were presented at the APSF Board of Directors Workshop on October 21, 2005. These unique and important accounts give clinicians a glimpse into how anesthesia complications affect our patients and their families and demonstrate the importance of good communication and disclosure.
Three intensely personal presentations of tragic anesthesia events were the nucleus of the APSF Board of Directors (BOD) workshop, “The Role of Patients in the Mission of the APSF,” at the APSF Annual Meeting October 21, 2005, in Atlanta. The survivor of an anesthesia-related cardiac arrest, the mother of an 11-year-old boy who suffered massive permanent brain damage from an anesthesia accident, and the wife of a 33-year-old marathon runner who eventually was allowed to die after an anesthesia mishap, all told their stories to an empathic audience that was appalled, entranced, and galvanized, in an effort to determine what the APSF can do to help heal their wounds and prevent others from experiencing such trauma.
While the APSF has sought patient input for many years, this was the first time the foundation was able to organize a program reflecting the perspective of patients or “victims” of injuries from accidents solely related to anesthesia care. As the broader concept of patient safety and the efforts at blame-free full disclosure and discussion following medical accidents have been more widely publicized in the U.S., survivors of medical catastrophes (including families of patients who die) appear more willing to publicly share their experiences. As a reflection of this, several survivor support/advocacy groups were recognized at the National Patient Safety Foundation Annual Meeting in May 2005.
Because the October APSF workshop was focused on the profound impact on patients and surviving families of incidents perceived to represent adverse outcomes specifically from anesthesia care, and how the APSF can learn from these stories, the presentations were accepted as offered by the non-medical survivors. There were no “M and M” type reviews, no questioning to search for precise details of the anesthesia care and possible mechanisms of injuries. The outcomes were what they were, even if the presenters in some circumstances may not have fully appreciated relevant aspects of physiology, pharmacology, or anesthesia protocols. Rather, the APSF Board of Directors was primarily interested in the experiences, perceptions, and emotions of the presenters. The goal was to gain new insight from a new source to help establish a role for patients in the APSF and also to guide and energize anesthesia care and patient safety efforts for the future. The stated ultimate objectives were to provoke action that will make the APSF better understand the needs and concerns of patients/families who experience an adverse anesthesia event and to develop methods for patients/families to be more involved in helping insure patient safety.
The workshop was organized and moderated by Jeffrey B. Cooper, PhD, Executive Vice President of the APSF. He stressed that this is the “human side” of the equation of anesthesia care—a balance to the remarkable technologic and behavioral progress in patient safety. A key goal of the program was to inaugurate a new perspective for the APSF that will be driven by the power of patients and the power of stories. Dr. Cooper noted that this program was an attempt to “open up the filters” that physicians often automatically apply to patients’ views and avoid the reflex response of “that’s not how it’s done”/“that can’t be done” so often applied to ideas from patients or their survivors. Further, he commented that one of the reasons it had been difficult to assemble a program of this nature was that (fortunately) anesthesia care catastrophes are exceedingly rare, and also that open public discussion can be inhibited by medical-legal exigencies (there were no pending claims or proceedings involving any of the workshop presenters). One inspiration for Dr. Cooper was the open discussion by both the survivor of an anesthesia-induced cardiac arrest and the involved anesthesiologist of an event that occurred within the Harvard system (Dr. Cooper’s academic affiliation), and that was the basis of the first story. [NOTE: Following are brief summaries of the presentations. First-person detailed accounts authored by the workshop presenters themselves are planned for an upcoming issue of the APSF Newsletter.]
The patient who survived a life-threatening anesthesia complication and her anesthesiologist stood shoulder to shoulder at the lectern to recount their perspectives of an anesthesia nightmare. The assembled APSF Board was spellbound by the gut-wrenching story.
Ms. Linda Kenney, at age 37, was scheduled for one in a long series of foot/ankle surgeries and agreed to a popliteal nerve block as part of the anesthetic. Frederick (Rick) van Pelt, MD, had extensive experience with such blocks. Using a nerve stimulator, he injected 30 ml of bupivacaine in a routine incremental manner, employing classic safeguards. However, subsequent evolving signs of bupivacaine toxicity were followed by grand-mal seizure and cardiac arrest. After 10 minutes of ACLS protocol without any impact, a fortuitous set of coincidences led to the resuscitation of the patient. Directly across the hall from the OR in which the arrest occurred was an open-heart surgery OR, cardiopulmonary bypass (CPB) pump primed and ready, waiting for a patient to arrive. CPR in progress, Ms. Kenney was wheeled across the hall and “crashed” on to CPB via an emergency sternotomy. Within a few minutes and approximately 30 minutes after the injection, sinus rhythm returned. After an hour on CPB, she was weaned. The incision was closed and she was taken to ICU, where she recovered without neurological damage over the following days.
The parallel perspectives on the events following the arrest and resuscitation were fascinating. Dr. van Pelt was told that he had done the block correctly, that even the best physicians get sued, and not to talk to anyone about the event. Ms. Kenney’s husband was called to the hospital, sequestered alone in a small conference room for an extended period, and was offered no immediate or long-term support for his distress, panic, and anger. Ms. Kenney recalls awakening in the ICU and later being told she had “an allergic reaction to the anesthesia,” which she found hard to believe, and that made her distrustful. There was no other discussion of the cause of the incident with her. She was most concerned about the emotional well-being of her 3 young children. After experiencing some minor but annoying complications, she was discharged 10 days after the arrest with wound care instructions for her chest and a follow-up appointment for that, but no counseling of any type. Dr. van Pelt wanted very much to speak with the patient while she was in the hospital, but was strongly discouraged from doing so by the hospital administration and, fearing the negative emotional impact to the patient, also by her caregivers. He was expected to go back to work the next morning as if nothing had happened, even though he was very emotional and distracted.
Ms. Kenney knew she was lucky to be alive and knew if she had been at a different hospital, she likely would have died. Against advice, Dr. van Pelt wrote her a letter about 10 days after her discharge acknowledging the suffering she and her family had experienced, apologizing for what he had done, and expressing a desire for open and honest communication. He stated in his presentation that if the letter provoked her to sue, “so be it.” He did not believe he made an error, but he did feel responsible. Ms. Kenney at the time believed this letter was just “damage control” and ignored it. She experienced “survivor guilt” and eventually devolved into significant post-traumatic stress disorder. The event was reviewed in the hospital QA system and in the debate over whether this was a reportable “sentinel event,” Dr. van Pelt felt “hung out to dry.” For a number of reasons, he left that hospital and relocated to Seattle 4 months later. Ms. Kenney was depressed. Her multiple calls to the hospital for help and support yielded nothing but uncompassionate form letters. She asked for the names of the people on the team that had saved her life so she could thank them and was refused. She grew very tired of being asked by everyone she knew whether or not she was going to sue, and if she saw the white light. She ultimately decided not to sue because she saw the incident as a complication, not an error, and also because she wanted to move on with her life. She decided there would be benefit from finally responding to Dr. van Pelt’s letter. Six months after the event she contacted him in Seattle and they had an uplifting phone conversation that was the start of healing for them both. He told her all the clinical details, and she had understanding and forgiveness. Dr. van Pelt eventually returned to his former hospital in Boston, and 2 years following the event, they met in a coffee shop to talk further.
Constructive interaction between the survivor of an anesthesia catastrophe and the involved anesthesiologist yielded a resolve to “do something” about the appalling lack of support and care revealed by the aftermath of this event. Ms. Kenney founded the Medically-Induced Trauma Support Services (MITSS – website), an organization dedicated to helping patients, families, and care providers involved in adverse medical events. MITSS focuses on the need for 1) full disclosure in real time; 2) an apology or acknowledgment of responsibility and recognition of the traumatic impact; 3) concrete efforts to prevent similar occurrences in the future; and 4) support that is flexible and patient directed—emotional, logistical, financial, or whatever is needed (excepting legal). To its credit, the hospital that just wanted Ms. Kenney to go away after her event, now 6 years later, embraces MITSS in its efforts to correct the glaring deficiencies exposed by her experiences. Dr. van Pelt reiterated that the “wall of silence” operative in his case just pushes patients and their families to sue. It also takes a huge toll on the involved caregivers. He was not supported at all by his colleagues after the event (even though he felt some wanted to reach out to him, but they did not). He had no way to express and deal with his feelings, which, he stated, is typical in the medical care system. Even though the idea that this case “was a phenomenal save” was universally discussed, no one really considered the enormous impact it had on him. Consequently, Dr. van Pelt has assembled a task force at his hospital to develop an OR pilot program to implement after an event that will provide flexible peer-based, emotional support (including group and individual stress debriefing), and access to other resources. He believes the core concept of “integrity and compassion” will have a major beneficial impact.
Uncharacteristically, the APSF Board was virtually speechless after this presentation. There was unanimous acknowledgment that there is a great deal the APSF specifically, and the medical care establishment in general, can learn from thoughtful patient input. An obvious key element was the “disconnect” of the starkly different perspectives and priorities of the patient/family versus the medical care establishment, and the potential damage this disconnect can cause. Overcoming this clearly can have helpful risk management implications, but the emphasis is on promoting healing for all involved. Likewise, the final note of the presentation was positive in that it was recognized that everything was done exactly wrong regarding communication and support, but that this fact led to awareness and constructive changes that should help all those involved in any future anesthesia care catastrophe.
“A Parent’s Nightmare”
Ms. Sue Stratman opened with the observation that she had seen both the best and worst of the medical care system. She is the mother of Daniel, who was born with congenital heart disease but had done spectacularly well with 3 open-heart surgeries over the course of his first 11 years and in 1996 was well and vigorously active, successfully playing competitive soccer. He was found to have an inguinal hernia and the repair under general anesthesia was scheduled at the same very well-known large academic medical center where he had his heart repaired. There was a thorough discussion of Daniel’s history, cardiac status, and the anesthesia plan with the attending anesthesiologist prior to what was planned for a quick outpatient procedure. During the anesthetic, Daniel arrested and his heart was resuscitated, but he suffered permanent brain damage such that he today is blind, cannot use his arms, can walk only with the assistance of 2 people, can barely speak, and needs total 24-hour care.
Ms. Stratman stated that she was not aware preoperatively that a student nurse anesthetist would be involved in the anesthetic and would be left alone with Daniel during the case by the attending who was also supervising another room. The anesthesiologist was also distracted due to her own ongoing family issues. Ms. Stratman stated that the records had been altered “to make it look like his heart had given out,” but that eventual analysis of the original records and the printout from the monitor values suggested this scenario: Daniel climbed up on the table himself and was given an inhalation induction with 5% halothane; this induction dose was continued and not reduced to maintenance levels when the attending left the room; the non-invasive blood pressure machine (NIBP) had not been set to cycle at intervals, and the single initial blood pressure value was recorded 3 times on the record over nearly 15 minutes; an LMA was in place, but spontaneous breathing slowed so there was hand-assisted bag ventilation; the surgeon remarked on dark-colored blood upon incision; cycling the NIBP revealed profound hypotension and heart block, then arrest followed.
There was little communication to the family immediately after the event, and there was a delay in allowing them to see Daniel in the PACU, where he was intubated, ventilated, having seizures, and posturing. Beyond the panic, Ms. Stratman was crushed because she had promised Daniel no tubes or ventilator this time. After a week of little improvement and essentially no communication to the family, there was mention of the possibility of discontinuing life support. Daniel’s cardiologist demanded an investigation at the hospital. The attending anesthesiologist visited daily and was emotionally distressed, including about events in her own family, which she discussed with Daniel’s family. Ms. Stratman stated that the attending anesthesiologist communicated to her that she never really understood what had happened. Mrs. Stratman came to believe that the anesthesiologist did know what happened but did not disclose this.
Ms. Stratman stated that they were kept completely in the dark about the incident, and she learned that the hospital staff had been instructed not to talk with anyone (family, friends, coworkers, or other hospital personnel) while the investigation (initiated by the cardiologist) was conducted. She stated they were stunned to learn the truth about the event but, painful as that was, it was critical to know everything. The family did receive an out-of-court financial settlement. They did receive an acknowledgment from the hospital that mistakes had been made, but no acknowledgment from the anesthesiologist. Neither the hospital nor the anesthesiologist ever admitted that the records had been altered. Ms. Stratman stated that, even 9 years later, she would like the opportunity to talk with the anesthesiologist to help bring closure because she suspects that the anesthesiologist is not doing well with the burden of the situation.
Ms. Stratman clearly outlined what she believes should happen with the anesthetic for a surgery such as Daniel’s: 1) take it seriously—as if it is the most complex major surgery imaginable, even though it’s a “minor case”; 2) the attending should never leave the patient [although it appeared that the function of anesthesia trainees in academic medical centers was not fully appreciated]; 3) be sure the equipment works and is used correctly; and 4) tell the truth. As seen in the previous presentation, there was a profound desire by this family to “do something” to help prevent tragedies such as this. The family has started the Daniel Stratman Foundation to help educate about patient safety. They are members of a medical malpractice survivors’ support group. Ms. Stratman stated they had served on a hospital “parents board,” but abandoned that when it was clear to them the hospital was not really interested in discussing substantive patient safety issues with families.
Again, the APSF Board was moved. Note was again taken of the potential disconnect between patient/family understanding of events during medical care, prospectively, and especially retrospectively, and the providers’ realities. The damaging impact of failure of disclosure after the event and overall failure of communication was unmistakable. Finally, as before, the drive by the survivors to “do something,” to “make a difference” so similar catastrophes would not afflict other families in the future, was heartfelt and strong, which is precisely the element sought by the APSF Board in these presentations and, more importantly, as stimulus for future follow-up efforts by the foundation.
“A Question of Competence”
Dr. Julianne Chase, Senior Assistant Dean for Medical Education at NYU School of Medicine, revealed to the APSF Board that this was the first time she had discussed with a professional group of physicians the event her husband experienced in the OR since it happened, in 1986. She then told the powerful story of Danny Delio, 33, an exercise physiologist in superb physical condition as an active marathon runner. He had had previous hemorrhoid surgery and the same surgeon suggested surgical treatment of an anal fistula after draining an abscess in the office. Over Dr. Chase’s objection, Danny scheduled his surgery at a local community hospital rather than an available teaching hospital. An internist friend of theirs told them there were 2 anesthesiologists at that hospital to avoid because of prior complications and incidents, and that he would speak with the surgeon to advise him which anesthesiologists to request and which to avoid. Danny had confusion on the day of the procedure about which was which, but did not want to bother his internist friend early that morning to check. He did ask his surgeon if the procedure could be done without general anesthesia and was advised that was not a good idea. The anesthesiologist who did the preoperative evaluation was not the one who would be administering the anesthetic, and Dr. Chase did not believe this was proper, but Danny was prepared to go ahead and did so. Both believed the internist friend had arranged for one of the “good anesthesiologists” to do the case.
Precise events in the OR were never clear to Dr. Chase. Near the end of the case, with Danny breathing spontaneously, reportedly “with very little assistance,” the anesthesiologist announced that there was a cardiac arrest. Danny’s heart was resuscitated in 5 minutes, but he then suffered intractable grand mal seizures reflecting hypoxic brain damage. After intubation and ventilation in the OR, Danny’s pCO2 was more than 80, and the pH was 7.0, suggesting that there had been unrecognized hypoventilation and consequent respiratory acidosis. He was transferred out of the hospital where the event occurred to the ICU in the larger local county hospital in a persistent vegetative state, where he became the subject of a court case regarding withdrawal of nutrition and hydration. Danny Delio died 13 months after his anesthetic for repair of an anal fistula, and following a landmark court case supporting his right to refuse medical treatment if he were ever in a persistent vegetative state.
Following the catastrophe, the family’s internist friend confirmed that the anesthesiologist involved was one of the two he had said to avoid. Apparently the anesthesiologist requested had been working all weekend and had transferred this case to his senior colleague on the morning of surgery. When the surgeon was later asked why he accepted this personnel change, he replied that he thought it did not matter. In the one conversation Dr. Chase had with the involved anesthesiologist, he had no explanation for the cause of the event, was defensive, and offered no expression of remorse or regret. She never saw or spoke to him again. The surgeon expressed deep regret and sorrow, particularly after Danny’s death, and this revealed to Dr. Chase the profound impact medical misadventure can have on the involved practitioners, recalling some of the points made by Dr. Van Pelt.
Dr. Chase was told that the involved anesthesiologist retired soon after the event under pressure from the hospital. Her malpractice suit was settled out of court.
She, at times, still feels guilty about not having been more insistent on the morning of surgery about being certain that her husband was getting the “good anesthesiologist,” but that revelation provoked her to share persistent questions about the internal regulation of the quality of practice within the medical profession, and the obvious patient safety implications. Why were there anesthesiologists practicing who should be avoided—particularly when other doctors at the hospital knew of their lapses? How does one stop doctors from practicing when they are incompetent? Why is it so difficult for physicians to monitor each other? [Following Dr. Chase’s presentation, intense discussions ensued regarding these questions.]
Again, as with the others, Dr. Chase expressed a strong desire to help implement measures that will prevent similar catastrophes from striking other patients and families. She suggested a monitoring program to detect “near-misses” and physicians who are “slipping repeatedly,” and then a remediation program for them and also alternatives to divert physicians into jobs they could safely perform. The APSF Board continued the thorny and complex discussion of the issues of measuring physician competence, setting criteria for action, and implementing enforcement when a quality problem is documented. Finally, the related extended patient safety concept that injuries would be prevented by implementing such a program was raised but, predictably, there was no agreement.
So Now What?
The high-impact and thought-provoking nature of the 3 presentations was dramatically evident by the length, breadth, and intensity of the discussion among members of the APSF Board and also the presenters. Consistent with the goal of outlining possible action for the APSF, several themes and suggestions emerged. One important item that could immediately and directly help prevent or mitigate patient injuries was again broadcasting a reminder that “Administrative Guidelines for Response to an Adverse Anesthesia Event” have been published and are available on the APSF website: www.apsf.org, “Resource Center,” “Clinical Safety Tools,” then “Adverse Events Protocol.” Another suggestion was the simple idea of surveying patients/families to help determine what type and how much information and communication they really want, both in general and specifically concerning an adverse medical event.
A primary specific initiative is to continue to collect (possibly including through a “hotline” to the APSF) and publicize these potent “stories” of patients/families who have experienced an adverse anesthesia event. Not only will this raise the awareness of all those who read those accounts, it will form a database that can be organized and mined for common elements, much like the model of the ASA Closed Claims study that identified clinical trends (preventable hypoventilation as a cause of injury) and even specific syndromes (cardiac arrest during spinal anesthesia). A related initiative will be the use of the great power of the telling of these stories to develop a curriculum in “the patient side of anesthesia patient safety” for distribution to all anesthesiology residency and nurse anesthesia training programs, as well as to medical schools for incorporation into their clinical teaching. Closely tied would be additions to modules used in anesthesia simulator training that add experience in post-event management of both the patient/family and the involved anesthesia provider. This intense role-playing likely would evoke strong emotions and would be videotaped for the debriefing of the participants in the specific simulation and also for potential inclusion in curriculum modules for anesthesia trainees and medical students. Having these modules available on the web for all anesthesia providers through their respective national professional organizations also would have a significant impact because their direct relevance and inherent drama would provoke widespread interest and attention.
One major recurrent theme was the failure of communication with the patient/family at the time of the catastrophic event and thereafter. The overall concept of trying to shift from a “culture of blame” to a “culture of learning” certainly applies. It was agreed that, in the spirit of “the patient’s bill of rights,” there should be an expectation by the patient/family of open communication and full disclosure (even to the point that the surgical/anesthesia consent forms should specify that after any event, prompt full disclosure will be made). The expected concerns about risk management and the potential legal liability implications of apologies and full disclosure were expressed, but reference was then made to the study from the VA system demonstrating a significant reduction in liability costs associated with prompt full disclosure after an event. Related was the favorably-received suggestion that patient care facilities where anesthetics are administered should have an ombudsman or “patient advocate” always immediately available or on call so that this advocate can immediately interpret, facilitate communications, and organize support of all types for the involved patient/family in the event of an anesthesia accident, or any acute medical adverse event for that matter. This tied in to the projected goal that perioperative services should be “high-empathy organizations” as well as high-reliability organizations. The proposal that patient/family representatives be included on the committee for the peer-review analysis after an adverse event provoked significant discussion, but did not yield a consensus. However, the suggestion that the institution and the practice group involved with an anesthesia accident share with the affected patient/family the details of changes made following the event (whether policy, procedure, behavior, equipment, or organizational) intended to prevent any recurrence of that type of accident met with widespread approval.
Promoting thoughtful, compassionate, and open support for anesthesia providers who have been involved in a catastrophic anesthesia accident (even one with an eventual good outcome) is another unanimously accepted proposal resulting from the APSF Board workshop. Clearly the front line and the bulk of this effort should be at the local level, within the institution and immediate group of the involved anesthesia provider(s). Prospective concrete plans that are widely disseminated to all involved should be in place in order to avoid a confusing scramble of disparate resources at the time of an event. Group leaders and facility administrators should immediately activate the pre-planned response to provide support and counseling, as well as specific advice and encouragement about disclosure to the involved anesthesia personnel. Further, it was suggested that the APSF could establish another type of “hotline” to offer situation-specific suggestions to assist and support the personal needs and concerns of anesthesia providers finding themselves under stress following involvement in an adverse event. The more general question of anesthesia providers under so much personal stress as to be dangerously distracted and a safety risk was also broached. Enhanced vigilance and sympathetic support from coworkers, promoted by articles such as this one, was seen as the best immediate strategy.
Finally, possibly the thorniest issue closed out the discussion. The question of measuring practitioner competence and quality of practice and, then, how precisely this translates into documentable impact on patient safety prompted calls for further discussion and research. A survey of anesthesia providers regarding how they would suggest evaluating practice competency was proposed. Implementation of carefully crafted true “360 evaluations” for anesthesia clinicians was recognized as potentially very valuable, but cumbersome to implement. Soliciting APSF Research Grant applications regarding this specific technique and even a small pilot study conducted by the APSF itself were considered. The APSF Executive Committee will address these ideas in January. Likewise, offered for consideration was possible APSF sponsorship of a larger study that would start with an attempt to define baseline anesthesia competency.
Overall, the APSF Board of Directors Workshop on “The Role of Patients in the Mission of APSF” was a remarkably rich and stimulating experience that appeared to have more impact on the participants than could have been imagined. The APSF has resolved to have more awareness of and input from patients and families, both in general and specifically related to the aftermath of anesthesia catastrophes. Optimum utilization of this untapped resource can only enhance and encourage efforts to further the APSF stated mission that “no patient shall be harmed by anesthesia.”
Dr. Eichhorn, Professor of Anesthesiology at the University of Kentucky, founded the APSF Newsletter in 1985 and was its Editor until 2002. He remains on the Editorial Board and serves as a senior consultant to the APSF Executive Committee.