Triaging Suffering: Facilitating Peace in a No-win Situation

Introduction: Permanent life prolonging technology in the setting of severe neurological injury remains controversial. As a large center north of the Mexican-American border, our institution handles transfers where medical care plans are challenging secondary to immigrant status. Due to severe disease and social barriers, Josie’s case highlighted values around patient and family suffering for our own institution.

Case Description: Josie is an 11-year-old previously healthy girl who presented to an outside hospital acutely altered. A large intraparenchymal hemorrhage secondary to a ruptured AVM was found; an emergency craniotomy was performed. Day 3, she was transferred to our center for further management. Despite no sedation, Josie remained unresponsive. The palliative team was consulted to elicit goals of care. Numerous family meetings were held where the medical team expressed concern for poor prognosis. The family agreed to DNR but asked the medical team to continue current medical care, including intubation and ventilation. Josie’s mom is a single parent, but the maternal aunt was involved in decision making. Josie’s aunt stated Josie is alive “as long as she has a heartbeat.” Of note, Josie is not a citizen, was unfunded and there was no clear path to healthcare coverage. The medical team was concerned that even if a tracheostomy and gastrostomy tube were placed, the family lacked resources to care for Josie at home. One month after initial presentation, an ethics consult was placed for inappropriate medical care in the setting of severe neurological injury without recovery. In a subsequent provider meeting, the physician team chose not to pursue a legal process of medical futility. Ultimately a tracheostomy and gastrostomy tube were placed. The hospital agreed to provide some durable medical equipment, supplies and outpatient care so Josie could be discharged home with her family.

Discussion: In this case, the medical team attempted to disentangle confounding factors. Just as one treats a whole person though, the team had to recognize the interplay of ethical and social issues. Our medical team was forced to identify our core values. Our institution’s culture does not support physician driven withdrawal of care despite state laws. Of competing values, the physician team highest triaged the family’s wishes. It was imperative to our team that the family have the peace of knowing “everything was done.” This case has served as an example and helped the medical team move through similar subsequent situations in a more timely and less emotionally compromising manner.

Conclusion: In devastating medical cases where there is no good outcome it is helpful for the medical team to identify and triage their own values. When they occur, pivotal cases such as the one described can serve as models for a specific institution and may help inform conversations and recommendations in future cases.