A Descriptive Analysis of Access to Assistive Technology in Children With Acquired Brain Injury: The Right to Assistive Devices.

OBJECTIVE: Pediatric clinicians caring for children with acquired brain injury have noted that many individuals requiring assistive technology (AT) go unserved or face delays until devices are obtained, with potential adverse implications for recovery and development. In this article we map the pathways by which AT is prescribed and assess delays and barriers to access. METHODS: We conducted a retrospective chart review of patients with moderate to severe brain injury admitted to Blythedale Children's Hospital over a 2-year period using a database drawn from the medical record. RESULTS: We identified 72 children diagnosed with brain injury requiring at least 1 device. Devices were used to improve mobility and positioning, self-care, safety, and communication, and enable access to other technologies and foster social integration. We found that 55% of devices were delivered, with most deliveries to home or the hospital's outpatient department for fitting, training, and instruction. Time to delivery ranged from 12 to 250 days with an average of 69.4 days. Twenty percent of nondeliveries were attributable to change in medical status, transfer to a skilled nursing facility, or continued inpatient status, while 31% were canceled by the family. Other nondeliveries were attributed to insurance coverage. We also found that the medical record is not designed for the longitudinal tracking of devices, indicating the need for a prospective process to document the AT trajectory. CONCLUSION: Instead of tolerating delays and denials, there should be a normative expectation that children have a right to medically necessary devices, consistent with disability law. This analysis was undertaken as a step toward formulating a prospective means of tracking AT recommendations, approvals, denials, and/or deliveries. Our findings should be understood as a promissory note toward structural reforms that are reflective of society's responsibility to better meet the needs of vulnerable children and their families.

Phases of a Pandemic Surge: The Experience of an Ethics Service in New York City during COVID-19.

When the COVID-19 surge hit New York City hospitals, the Division of Medical Ethics at Weill Cornell Medical College, and our affiliated ethics consultation services, faced waves of ethical issues sweeping forward with intensity and urgency. In this article, we describe our experience over an eight-week period (16 March through 10 May 2020), and describe three types of services: clinical ethics consultation (CEC); service practice communications/interventions (SPCI); and organizational ethics advisement (OEA). We tell this narrative through the prism of time, describing the evolution of ethical issues and trends as the pandemic unfolded. We delineate three phases: anticipation and preparation, crisis management, and reflection and adjustment. The first phase focused predominantly on ways to address impending resource shortages and to plan for remote ethics consultation, and CECs focused on code status discussions with surrogates. The second phase was characterized by the dramatic convergence of a rapid increase in the number of critically ill patients, a growing scarcity of resources, and the reassignment/redeployment of staff outside their specialty areas. The third phase was characterized by the recognition that while the worst of the crisis was waning, its medium- and long-term consequences continued to pose immense challenges. We note that there were times during the crisis that serving in the role of clinical ethics consultant created a sense of dis-ease as novel as the coronavirus itself. In retrospect we learned that our activities far exceeded the familiar terrain of clinical ethics consultation and extended into other spheres of organizational life in novel ways that were unanticipated before this pandemic. To that end, we defined and categorized a middle level of ethics consultation, which we have termed service practice communication intervention (SPCI). This is an underappreciated dimension of the work that ethics consult services are capable of in times of crisis. We believe that the pandemic has revealed the many enduring ways that ethics consultation services can more robustly contribute to the ethical life of their institutions moving forward.

Improving Communication With Surrogate Decision-Makers: A Pilot Initiative.

BACKGROUND: Difficult conversations in medical care often occur between physicians and patients' surrogates, individuals entrusted with medical decisions for patients who lack the capacity to make them. Poor communication between patients' surrogates and physicians may exacerbate anxiety and guilt for surrogates, and may contribute to physician stress and burnout. OBJECTIVE: This pilot study assesses the effectiveness of an experiential learning workshop that was conducted in a clinical setting, and aimed at improving resident physician communication skills with a focus on surrogate decision-making. METHODS: From April through June 2016, we assessed internal medicine residents' baseline communication skills through an objective structured clinical examination (OSCE) with actors representing standardized surrogates. After an intensive, 6-hour communication skills workshop, residents were reassessed via an OSCE on the same day. A faculty facilitator and the surrogate evaluated participants' communication skills via the expanded Gap Kalamazoo Consensus Statement Assessment Form. Wilcoxon signed rank tests (α of .05) compared mean pre- and postworkshop scores. RESULTS: Of 44 residents, 33 (75%) participated. Participants' average preworkshop OSCE scores (M = 3.3, SD = 0.9) were significantly lower than postworkshop scores (M = 4.3; SD = 0.8; Z = 4.193; P < .001; effect size r = 0.52). After the workshop, the majority of participants self-reported feeling "more confident." CONCLUSIONS: Residents' communication skills specific to surrogate decision-making benefit from focused interventions. Our pilot assessment of a workshop showed promise, and additionally demonstrated the feasibility of bringing OSCEs and simulated encounters into a busy clinical practice.