Managing Competing Interests Between Appointed Surrogates and Extended Family in End-of-Life Care

Area of Science:

• Medical Ethics
• Pediatric Care
• Clinical Decision-Making

Background:

• Case study involving a terminally ill, incapacitated young adult patient.
• Disagreement among health care proxy, extended family, and medical team regarding treatment withdrawal.
• Challenges in decision-making for young adults at the intersection of pediatric and adult medicine.

Purpose of the Study:

• To discuss the concept of the 'marginalized decision-maker'.
• To explore blending pediatric 'best interests' with adult 'substituted judgment' standards.
• To identify strategies for managing moral distress and promoting shared decision-making in complex cases.

Main Methods:

• Ethical analysis of a clinical case involving a young adult patient.
• Review of decision-making frameworks for incapacitated patients.
• Exploration of clinical strategies for family and team meetings.

Main Results:

• The 'marginalized decision-maker' concept is crucial when family dynamics impede proxy decisions.
• Integrating pediatric and adult decision-making standards is necessary for young adults.
• Effective communication, ethical training, and reflective skills can reduce moral distress and improve care.

Conclusions:

• Shared decision-making requires sensitivity to family dynamics, culture, values, and past experiences.
• Physician training in clinical ethics and reflective practice is vital for quality patient care.
• Addressing moral distress among healthcare teams enhances the work environment and patient outcomes.