Justin Baker
St. Jude Children's Research Hospital, USA
Title: Walking the line: Ethical decision-making with families at the fringes
Biography
Biography: Justin Baker
Abstract
Over the past 100 years medical decision-making in the United States shifted from a paternalistic physician-driven process to a patient-driven autonomy-based standard. Over the past 10-years the pendulum shifted to a balanced meet-in-the-middle approach commonly defined as shared decision-making. Families who listen to all the medical options and select the recommended (standard) option are often perceived to be equal partners. Families that refuse medical recommendations or demand medically inappropriate interventions exist outside of the norm, challenge the communication and shared decision-making skills of clinicians, and may reveal our biases. In this interactive workshop participants will learn the principles of ethical reasoning used when evaluating possible medical neglect or demands for futile or medically inappropriate care. The workshop will provide participants with strategies for communicating with families perceived to be “unreasonable” or at the fringe as well as provide suggestions for reducing the moral distress inherent in these ethically challenging cases. Objectives: 1. Differentiate when parental refusal of a recommended therapy does and does not constitute medical neglect. 2. Recognize when familial requests are demands for futile or medically inappropriate care. 3. Negotiate a treatment plan for families at either extreme using the principles of ethical-reasoning and shared decision-making.