The following is a rare first-person account of an adverse event told by the patient and her anesthesiologist; a story of pain and conflict followed by healing and reconciliation. A narrative of this event was published in the previous issue of the APSF Newsletter and is available online at www.apsf.org.
Linda (LK): On November 18, 1999, I entered the hospital to have an ankle replacement. I was born with congenital club feet, and this was my nineteenth surgery. I was an otherwise healthy 37-year-old woman, married, and a mother of 3, and for me this type of surgery had become routine. I met with Dr. van Pelt, the anesthesiologist, and we agreed to combine a nerve block with a general anesthetic for this procedure. I encouraged my husband to go to work; after all, we had been down this road may times. I don’t remember anything else from the day of my surgery.
I awoke a couple of days later with a large incision down my chest, tubes coming from every which way, and not able to fully appreciate what had transpired. It was only after I was transferred out of the ICU that I was told that I had had a reaction to the anesthesia. I worried about my husband and children and used humor to lighten the atmosphere and remove myself from the event. Although the nurses were compassionate and visibly sympathetic, no one spoke about what had happened. My husband did not receive any counseling or emotional support while I was in the hospital, and when I was discharged home, I was only given wound care instructions and was told that I would have a visiting nurse.
About a week after I was discharged home, I received a letter from Dr. van Pelt. My first thought was that he was doing damage control, and I filed the letter away. I had more pressing immediate concerns, like my physical recovery and my family’s emotions around the event. I was just happy to be alive, and I found myself being strong for them emotionally while keeping my own feelings on autopilot. It wasn’t until several months had passed and my family and friends were moving on with their lives that I started to truly appreciate the emotional impact to myself. I began feeling survivor’s guilt; I survived while others are not as fortunate. I realized that I needed support and called the hospital for services, only to have the calls go unreturned.
By April I decided that I was not going to sue Dr. van Pelt. This decision was based on not wanting to be responsible for ruining his career. And, more importantly, I wanted to get my life back to normal and not drag my family through years of litigation. When I saw how deeply this event had impacted my surgeon, who was not even involved, I realized that this event must have had an impact on Dr. van Pelt. I decided to talk to him, and let him know I didn’t harbor any bad feelings. I wanted to forgive him so that I could move on with my life, and I did not want to be responsible for another person living with the burden of almost killing someone without any closure.
I had a burning desire to see what types of support services might be available. As I expanded my search I realized, much to my dismay, that very little support existed for those having been through medical trauma. The need to ensure that other patients and families did not feel unsupported after these types of events became somewhat of an obsession. After the 1-year anniversary, I wrote a letter to the hospital administration sharing my concerns about their lack of support; letting them know it was no longer about me, but the patients/families that followed. I did receive responses to my letters, but they only managed to make me angry. Today I am so grateful for those responses, because they only served to fuel my passion. I was a woman on a mission—I just didn’t know it yet!
I received a second letter from Dr. van Pelt around the second anniversary of “the event” letting me know he was back in the area, and to see if I was still interested a face-to-face meeting. The letter was a complete surprise. I never expected to hear from him again. I picked up the phone almost immediately. He had been part of one of the most traumatic and transforming events in my life, yet I had no idea what he even looked like.
van Pelt (RvP): On November 18, 1999, I was involved in an adverse medical event that transformed my life. Linda Kenney, an otherwise healthy, 37-year-old woman with congenital club feet, presented for an ankle replacement. After reviewing the medical record and discussing the anesthetic options with the patient, we decided to proceed with a general anesthetic and a popliteal fossa block for postoperative pain relief.
We performed the popliteal fossa block in the preoperative holding area using the standard precautions: full hemodynamic monitors, O2 face mask, and light sedation. When we had identified the nerves using a nerve stimulator, we incrementally injected a total of 30 ml of 0.5% bupivicaine without difficulty. At the completion of the block, as we were positioning her supine, the patient suddenly became confused and disoriented, and rapidly progressed to having a grand mal seizure. Recognizing that the bupivicaine had gone intravascular, I immediately called for support, and we watched over the next minute as the patient progressed into hemodynamic collapse by ventricular fibrillation. CPR/ACLS algorithms were immediately started without any success in restoring cardiac function. We realized that given the absent response to resuscitation and the pharmacology of bupivicaine that our best chance of saving the patient would have to involve a more aggressive approach. By good fortune, a cardiac operating room with its complement surgical team was completely set up in expectation of another patient. We took the patient emergently into the room and within 35 minutes of the event she had had a sternotomy and was successfully connected to the bypass machine. Within 2 minutes of being on the pump, the patient’s cardiac rhythm was restored and after another hour she was successfully weaned off bypass and taken to the cardiac ICU for recovery.
The impact of what had happened did not really sink in until the patient had been successful weaned off bypass. I felt accountable for the event, and with the surgeon went to talk to the patient’s husband, whom we found alone in a small conference room within our Family Liaison area. He had not been given any details about what had happened other than that there had been “a complication with the anesthesia,” and he was pacing, frantic and panicked, as we entered. “What have you done to my beautiful wife?” he cried out as he came towards us. This is when the full impact of what I had done sank in, and I realized that I had had no training to deal with this emotional situation, in spite of best intentions. Saddened and stunned, I felt that I had no alternative in the moment, but to leave the husband.
I was given the rest of the afternoon off, but returned to work the next day as though nothing had happened. No one acknowledged the event directly, and there was no conversation about what had happened. Linda had a largely unremarkable recovery and was hospitalized for 10 days. I was told not to initiate any contact with the patient, but I felt committed to being accountable and to establishing a dialogue with the patient. In spite of multiple attempts over the course of her hospital admission, I was summarily prevented from seeing the patient. This was due to the combination of a protective husband, a clinician barrier (“she isn’t physically strong enough to have this conversation; we’ll take care of it”), and the administration’s medical-legal concerns. When the patient was discharged home in good physical condition 10 days later, I
felt as though any opportunity for communication had been lost.
Although the system was telling me that I was better off in not having communicated directly with the patient, I refused to accept that such an abrupt end to a patient care relationship was the correct path to take. I felt very strongly that my integrity was being compromised by the silence, and I felt compelled to find a way to reach out and establish contact. The only available option that I saw was to write a letter to the patient. I resolved that I was going to follow my values of integrity and compassion, regardless of the litigious fallout that might ensue. In the letter I acknowledged the pain and suffering that I had put the patient through, and I apologized for what I had done. I shared the impact that the event had had on me and finished by offering to communicate with the patient at any time should she so desire.
I received no response to my letter from the patient in the 6 months following the event and assumed that there would be no further communication. In May 2000 I was living in Seattle when I received a phone message that the patient had been trying to get in touch with me. Although I was apprehensive, this was the moment that I had tried so hard to achieve. So I went ahead and made the call. The conversation that followed was one of the most uplifting in my life. After clarifying the details about what happened during the event and sharing the emotional impact that this medical trauma had had on both of us, Linda offered me forgiveness for what I had done, explaining that she needed to do this for her own well-being. In an instant it was as though a great weight had been lifted off of my shoulders, and I was free to live my life fully again. We finished by committing to meet in person when we were again in closer geographic proximity.
RvP/LK: We had our first in-person meeting in November 2001 at a local café in Linda’s hometown of Mansfield. In addition to further reconciliation and healing at a personal level, Linda shared her frustration and anger about the lack of emotional support that the hospital had offered her in the 2 years since the event, in spite of repeated requests. In looking for national organizations that focused on providing emotional support services around medical events, Linda began to realize that the health care industry’s appreciation of the magnitude and the need for these services was largely absent. Realizing that Linda’s experience was not an isolated local event and that action had to be taken, Linda and I committed to creating awareness about the challenges and to developing support services for all individuals involved including patients, families, and care providers.
According to the IOM Report “To Err is Human” up to 98,000 deaths occur in United States hospitals due to medical error. If one considers the number of clinicians participating in these patients’ care and the immediate family members of these patients, the number of individuals impacted emotionally by these events is greater than 500,000. This number does not include those patients, families, and care providers affected by severe non-fatal adverse events. The IOM report estimates that more than 1 million patients are harmed by medical error each year. The health care industry aspires to emulate the safety culture and processes that the airline industry has successfully implemented to reduce the risk of a passenger fatality to less than 1:10,000,000. Even with this incredible safety achievement, the airline industry recognizes that passenger fatalities will always occur and has an organized and regularly-simulated support response in place for this eventuality. Based on the IOM report, the risk of an error-induced patient fatality is greater than 1:1,000, and yet the vast majority of the health care industry provides no organized support response for affected individuals.
There are a number of barriers that impede our response to adverse events. The Hippocratic Oath that physicians take to “first do no harm,” combined with the clinician culture of being emotionally “super human,” by necessity precludes the open acknowledgment of adverse events and their emotional toll. A blame-based review process and the fear of litigation when an adverse event occurs further limit disclosure, apology, support, and, as importantly, determining what actually happened during the event. Finally, the emotionally charged nature of these events, which usually involves anger, limits the care providerÕs desire to engage in conversation with the affected patients and families. The result is an angry health care consumer, traumatized and demoralized care providers, and a health care system that cannot fully implement interventions to correct the care process failure.
Medically Induced Trauma Support Services (MITSS) was incorporated in May 2002 with the mission to “promote healing and restore hope” to all affected by adverse medical events. MITSS offers patient and family support groups, nursing support groups, professional outreach, education, a 24-hour hotline, and a web site (www.mitss.org) to this affected community. The response to MITSS has been extremely positive, and the interest in the support model continues to grow.
The Brigham and Women’s Hospital (BWH) has recognized the need to provide an organized response to adverse events for its patients, families, and care providers and has taken active measures to promote full disclosure, apology, and support. In addition to an increased willingness to bring closure to adverse events with open mediation and by referring patients and family members to MITSS via the existing patient and family support services, BWH has created a task force that is developing an education and support program for care providers. The task force will launch a pilot program (SuppORt) in the operating room environment this September, which will serve as a platform for expanded service throughout the rest of the hospital.
As MITSS and BWH continue to expand their leadership roles in the support process around adverse medical events, the challenges remain significant. Education of care providers and visible support by executive hospital leadership are critical if health care’s current response to adverse medical events is to be transformed. A patient safety curriculum has been introduced at Harvard Medical School, which includes the MITSS and BWH focus on disclosure, apology, and support around adverse medical events. Education must also be effectively offered to trained clinicians so that the newly implemented support services will be actively utilized. Teaching communication skills around adverse medical events is also critical to an effective and compassionate response. This is likely to be facilitated by open support of senior leadership for such services and through the use of clinicians trained in peer support.
Dr. van Pelt is Director, Out-of-OR Anesthesia, Department of Anesthesia, Perioperative and Pain Medicine at Brigham and Women’s Hospital, Boston, MA.
Ms. Kenney is President of Medically Induced Trauma Support Services, Chestnut Hill, MA.