Background: Discussing advanced illness and end-of-life with adolescents and young adults (AYAs) is difficult due to complexities of family and medical systems, developmental issues and the challenges of addressing grief of patients, families, and staff. Ethical dilemmas often present as barriers to good palliative communication.
Methods: Dr. Kearney will examine ethical considerations in the care of AYAs at end of life, through the lens of a well-established framework for disentanglement of ethical and psychological factors when conflicts arise between patients, families and/or nursing/healthcare clinicians. Developmentally appropriate, palliative care focused communication skills will be reviewed. Interdisciplinary, collaborative models of palliative care will be considered for a range of healthcare settings.
Dr. Wiener will describe the development and implementation of Voicing My CHOiCES (VMC), an advance care planning (ACP) guide for AYAs. Participants will have opportunities to learn skills for the introduction of ACP and engagement of AYAs and their families. Other complementary clinical tools (e.g. therapeutic games) will be shared. Clinical cases, including those that have been presented to ethics committees, will be systematically explored within this framework.
Results: The development of VMC involved a two-part study with over 90 AYAs living with advanced cancer or HIV who 1) reported that an ACP guide for others their age would be helpful and important, 2) reviewed an adapted ACP guide and suggested changes in content, design, and format, resulting in VMC. A multi-center study (8 institutions) is underway to determine whether VMC is associated with reduced anxiety, improved social support, increased acceptance of illness, and/or improved communication about ACP.
Conclusions: With knowledge of medical ethics and adolescent development, and by first making a “situational diagnosis” to disentangle ethical and psychological issues, participants can learn skills for effective, compassionate, evidence-based palliative communication with AYAs at end of life.
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