PM2022: Preparation for Posthumous Surrogate End-of-life Decision-making

Introduction: We present a pediatric palliative case that required ethical and legal consultation to support special circumstance end-of-life surrogate decision-making.

Case Description: This is a 17 year old female with severe hypoxic ischemic encephalopathy at birth, epilepsy, cerebral palsy, respiratory failure requiring tracheostomy and ventilator, gastrostomy tube for dysphagia, and neurogenic bladder. She is nonverbal and does not have decision-making capacity. Her mother has full custody and is her legal guardian and surrogate decision-maker. Her mother has shared, “This is my culture. We just want them alive. Even if they stay in the hospital with all the tubes, and they don't know what is going on, most [people in my country] want to keep alive…They focus on survival and life."

This patient’s goals of care are focused on life prolonging treatment as long as her mother can support her daughter’s quality of life. In the event of her own untimely death or incapacity, her mother expressed concern about an absence of a caregiver who could provide the level of care she would desire for her daughter and the subsequent detriment to her daughter’s quality of life. She shared, “I don't want her to be here by herself with someone I don't know. If I can let her sleep and be at peace and not be in pain, then it gives me comfort. If I cannot take care of her anymore, I can [still] decide what is the best for her and what is the quality of life and quality of death.”

Discussion: This unprecedented case at our institution led to an approach that involved bioethical and legal consultation. Our hospital legal team advised that a living will is unlikely to be sufficient to support the goals for a patient's compassionate decannulation in the hospital setting if her sole decision-maker died unexpectedly. Because our patient has never had capacity for decision-making, she does not meet the criteria for an Advanced Directive or Power of Attorney. The hospital ethics committee and legal team recommended that she have a living legal surrogate decision-maker (i.e. legal guardian before age 18 and conservator upon reaching 18 years of age) for end-of-life medical treatment. For this unique case, we recommended naming a co-conservator who could initiate compassionate decannulation if her mother lost capacity or cannot be available due to death.

Conclusion: A multi-disciplinary strategy including bioethical and legal consultation helped to determine the most appropriate approach in this case. This mother selected a trusted family friend as a co-conservator. Completing this documentation has provided her with comfort knowing that the goals of care for her daughter will be honored even in the event of her own incapacity or untimely death.