I Need to Live Until I Die: The Inner Lives of Adolescents and Young Adults LWLTC (FR415)

Objectives 1. Identify pediatric-specific considerations regarding palliative sedation (PS). 2. Present an algorithm for when and how to implement PS for children. 3. Explore family reactions to the options and experience of PS. Much has been written on the topic of PS, including endorsements by AAHPM and the National Hospice and Palliative Care Organization of PS as an intervention of ‘‘last resort.’’ The use of PS for children, however, has gone largely unaddressed. As is the case with much of pediatric practice, algorithms and medications have been instituted ‘‘off-label’’ based on adult studies and analyses. In fact, the only relevant position statement of the American Academy of Pediatrics refers to ‘‘terminal sedation’’ (an outdated term) with exclusive reference to articles in the adult literature. Under-recognized are the unique aspects of pediatrics that directly impact both the decision to initiate PS and the manner in which it is implemented. These include the presumption toward aggressive treatment, the application of the best interests standard rather than substituted judgment, and the greater latitude afforded parents compared to the surrogates of adult patients without decisional capacity. This session will begin with an overview by a pediatrician/ethicist of the ethicolegal landscape surrounding PS with specific reference to its application to pediatric practice. Additional considerations beyond those typically incorporated into adult treatment algorithms will be considered. Next, a pediatric anesthesiologist will review the practical aspects of implementing PS, including indications for pediatric palliative sedation and a symptom-based approach to the pharmacologic management. This will explore the use, mechanism of action, and side effects of both opioids and benzodiazepines as well as the unique uses of ketamine, dexmedetomidine, and propofol. A brief discussion of techniques for terminal extubation will be included. Finally, the parent of a child who received PS will share her experiences. Specifically, she will describe the manner in which the option of PS was presented to her. After identifying the primary considerations in deciding whether to pursue this intervention, she will describe the experience of watching her child be sedated in order to control his symptoms while at the same time knowing that he would not survive nor be able to interact meaningfully with his loved ones again.