Joel Frader

Background: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer. Methods: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant. English- and Spanish-speaking parents completed surveys within 7 days of PICU admission and at discharge. Some parents participated in an optional interview. Results: Twenty-four parents of 18 patients completed both surveys, and six parents were interviewed. Of the survey respondents, 66.7% and 75% interacted with SWs or chaplains, respectively. Most parents described SW/chaplain interactions as helpful (81.3% and 72.2%, respectively), but few reported their help with decision making (18.8% and 12.4%, respectively). Parents described SW/chaplain roles related to emotional, spiritual, instrumental, and holistic support. Few parents expressed awareness about SW/chaplain interactions with other healthcare team members. Conclusions: Future work is needed to determine SWs’/chaplains’ contributions to and impact on parental decision making, improve parent awareness about SW/chaplain roles and engagement with the healthcare team, and understand why some PICU parents do not interact with SWs/chaplains.

(2020). Beyond the Apnea Test: An Argument to Broaden the Requirement for Consent to the Entire Brain Death Evaluation. The American Journal of Bioethics: Vol. 20, No. 6, pp. 17-19.

Rereading Renée C. Fox's “A Sociological Perspective on Organ Transplantation and Hemodialysis,” published in 1970, one is likely to be struck more by continuity than by change. The most pressing of the social, policy, and ethical concerns that Fox raised remain problematic fifty years later. We still struggle with scientific and clinical uncertainty, with the boundary between experimentation and therapy, and with the cost of organ replacement therapies and disparities in how they are allocated. We still have an imperfect understanding of transplant immune responses. We still debate when a potential donor “actually” dies, and we still seem to think better empirical criteria could harmonize the diverse religious, cultural, and socioeconomic values of patients, providers, third‐party payers, and policy‐makers. Organ transplantation was for Fox both a particular case unfolding in time and an entryway for discussing the difficult moral questions presented by many new medical technologies in a context of high demand and limited resources.

(2019). The Case of Seth: To Treat or Not to Treat. The American Journal of Bioethics: Vol. 19, No. 7, pp. 69-71.

Background: Little is known about how decision-making conversations occur during pediatric intensive care unit (PICU) family conferences (FCs).Objective: Describe the decision-making process and implementation of shared decision making (SDM) during PICU FCs.Design: Observational study.Setting/Subjects: University-based tertiary care PICU, including 31 parents and 94 PICU healthcare professionals involved in FCs.Measurements: We recorded, transcribed, and analyzed 14 PICU FCs involving decision-making discussions. We used a modified grounded theory and content analysis approach to explore the use of traditionally described stages of decision making (DM) (information exchange, deliberation, and determining a plan). We also identified the presence or absence of predefined SDM elements.Results: DM involved the following modified stages: information exchange; information-oriented deliberation; plan-oriented deliberation; and determining a plan. Conversations progressed through stages in a nonlinear manner. For the main decision discussed, all conferences included a presentation of the clinical issues, treatment alternatives, and uncertainty. A minority of FCs included assessing the family's understanding (21%), assessing the family's need for input from others (28%), exploring the family's desired decision-making role (35%), and eliciting the family's opinion (42%).Conclusions: In the FCs studied, we found that DM is a nonlinear process. We also found that several SDM elements that could provide information about parents' perspectives and needs did not always occur, identifying areas for process improvement.

Much of the journalism, some of the legal opinions, and some of the testimony and statements by clinicians about Alfie Evans and Charlie Gard have contained statements like “the patient should …