Introduction:
Moral distress is a phenomenon that often occurs in intensive care settings and is defined as “when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action” (1). The concept has been described most comprehensively in the pediatric nursing literature, as initial work suggested nurses experienced high levels of moral distress due to their proximity to patients and the hierarchy of decision-making leading limited control of care decisions (2-6). However, recent data suggests that moral distress also affects physicians and advanced practice providers (APPs) caring for critically ill patients, indicating that it is a broader issue than initially theorized (7-10).
While moral distress in critical care situations has been studied, there is comparably scant information about the degree of moral distress providers experience when caring for patients with chronic diseases requiring long term care. Anecdotally, providers caring for children requiring long term ventilatory support with tracheostomy dependence express some degree of moral distress. It is known that families caring for these children report some degree of distress (11), but little is known about the impact on providers caring for this population. To this end, we surveyed providers in an inpatient unit that specializes in the long-term care of patients with tracheostomy and ventilator dependence to determine the degree to which moral distress exists among these providers.