03 Nov Family-Centered Advanced Care Planning for Adolescents With HIV
MedicalResearch.com Interview with:
Maureen E. Lyon PhD
Division of Adolescent and Young Adult Medicine,
Center for Translational Science/Children’s Research Institute, Children’s National
The George Washington University School of Medicine and Health Sciences
Washington, District of Columbia
MedicalResearch.com: What is the background for this study?
Response: Despite policy recommendations to include adolescents with chronic and life-limiting conditions in decision-making about their own end-of-life care, barriers continue in clinical practice, including fear of distressing vulnerable adolescents and providers’ beliefs that these conversations are potentially harmful.
MedicalResearch.com: What are the main findings?
Response: Adolescents and families who participated in the highly structured Family Centered (FACE) Advance Care Planning program experienced intense emotions compared to controls and found the experience acceptable, worthwhile, and helpful with 99 percent attendance at all three sessions.
MedicalResearch.com: What should readers take away from your report?
Response: Structured, facilitated pediatric advance care planning is feasible, and safe for teens who want a voice in their own end-of-life care and for their families who want to know what their children desire, if there were to be a bad outcome.
MedicalResearch.com: What recommendations do you have for future research as a result of this study?
Response: Future research should identify ways to include adolescents in foster care and “unsupported” young adults who could not identify anyone they trusted enough to make decisions for them if they could not speak for themselves, an issue for HIV positive adolescents living with a stigmatized disease.
Implementation research or demonstration projects are needed to integrate advance care planning as standard of care from the time of diagnosis in pediatric hospitals for adolescents and youth with serious illnesses who want a voice in their future medical care, if they could not speak for themselves.
Access to advance care planning and completion of goals of care should be a quality indicator for patient-centered and family-supported care.
Payors should provide reimbursement for the time to conduct these conversations in pediatric hospital-based clinics and in-patient settings, as is the case for adults on Medicare.
MedicalResearch.com: Is there anything else you would like to add?
Response: The methods of this study may extend to other chronic illnesses (e.g., cancer, cystic fibrosis). Although patients report they prefer to have their physician initiate advance care planning conversations, adolescents and their families were willing to meet with trained/certified facilitators who then communicated the patients’ wishes to their treating physicians.
MedicalResearch.com: Thank you for your contribution to the MedicalResearch.com community.
Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV
Ronald H. Dallas, Allison Kimmel, Megan L. Wilkins, Sohail Rana, Ana Garcia, Yao I. Cheng, Jichuan Wang, Maureen E. Lyon, for the Adolescent Palliative Care Consortium.
Pediatrics November 2016
Note: Content is Not intended as medical advice. Please consult your health care provider regarding your specific medical condition and questions.
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