Discussion:
This novel study evaluated moral distress among providers caring for long term tracheostomy and ventilator dependent patients in a non-ICU setting. Our results suggest that moral distress scores for providers are similar in an inpatient unit caring for children with tracheostomy and ventilator dependence compared to pediatric and neonatal ICUs (4-6,8-9,12). There are similarities between ICU patients and non-ICU tracheostomy dependent patients that may explain this. For example, it is well known that caring for tracheostomy and ventilator dependent children is expensive for both families and health care systems, have high rates of readmission, are complicated by invasive procedures, can entail discussions around goals of care or complex treatment plans, and navigating the limited resources related to home healthcare (often limiting discharge planning) (13-15). These complexities lead to long hospital stays, and this may exacerbate moral distress in settings not designed for long term acute care. Unlike non-hospital based long term acute care facilities (LTAC), there are limitations to providing long term care in the hospital setting. Often these patients are very medically complex, limiting options that would normally mitigate distress, such as planned outings, group activities, and predictable schedules. In addition, patients with lengthy hospital stays of 1 year or more can disrupt or cause bottlenecks in patient flow, placing chronic systemic pressure on staff with respect to space and bed availability.
One particularly novel finding in our study is the high rate of moral distress experienced by APPs. This is likely attributable to a variety of reasons. First, in the TCC, APPs do not rotate off service as often as physicians (physicians cover between 2-6 weeks a year in the unit). The APP’s are also responsible for a larger number of patients in the unit than the RN/RTs, which each APP covering 6-10 patients each shift. APPs thus provide a high degree of continuity for all patients in the TCC, and are subjected to the stressors for every patient in the unit for an extended period of time. This is contrasted to attending physicians, who are subjected to stressors for every patient in the TCC, but who rotate off service on a regular basis. RN/RTs, by contrast, are subjected to stressors for extended periods, but care for a discrete number of patients. While all groups surveyed experience moral distress, our hypothesis is that both the amount of patient exposure and the constancy of this exposure plays a role in the degree of moral distress that is experienced by APPs (5,6, 16). Second, APPs are responsible for much of the day-to-day care of patients with the premise of practice autonomy, however, this impacted by inconsistencies in professional equity from attending physician to attending physician.  The tension between a high degree of responsibility accompanied by a lack of, or inconsistency in, professional equity may lead to moral distress and burnout. (16-19).
Understanding moral distress is important due to the significant impact it has on burnout and staff turnover (3,8-9, 20-26). In addition, burnout is associated with poorer quality of care, and significant expenses due to decreased clinical productivity and early retirement (24-26). Anecdotally, this has been seen in the TCC, with low rates of engagement among providers for leadership activity outside of clinical work. Understanding factors that are associated with moral distress is important to provide options to decrease distress. Current strategies recommended by the literature focus on mitigating the intensity of stressors, and include education programs, reflective writing, debriefing meetings, and moral empowerment programs (27-28). While some early results are promising, the evidence is unfortunately mixed on the durability of such interventions, and more research is necessary. Our results suggest that along with decreasing the intensity of stressors, decreasing the time of exposure (rotating off service) to distressing situations and better balancing provider authority and responsibility may also be necessary.
Our study has limitations consistent with any survey research. First, a survey is a single snapshot in time, and recent patient interactions may have influenced providers with salient distressing situations to fill out the survey at a higher rate than those who had lower levels of distress (non-responder bias). Second, this study was carried out before the COVID-19 pandemic, and this may skew results, as recent data suggests that the worldwide pandemic may change the degree of moral distress felt by providers (29). Third, about a year prior to this study, a clinical psychologist (APB) was embedded within the unit to deliver evidence-based psychological interventions to patients and families to promote coping and functioning as well as to help support staff with feelings of distress. Due to this, our rates of moral distress may be lower than similar units without this support in place. Despite these limitations, our study remains the first quantitative examination of moral distress in a non-ICU caring for long term tracheostomy/ventilator dependent patients.