The FACE intervention is the first structured and individualized model for adolescents living with HIV to meet AAP1
guidelines as well as clinical recommendations.31–36
FACE was conducted when the patient was medically stable; respected individual differences, acknowledging those who prefer to have their doctor or family make these decisions for them, or who are interested but not ready; promoted shared decision-making; and was conducted by certified/trained facilitators utilizing a structured curriculum.
A contribution of this study is the involvement of the targeted consumers, adolescents with HIV/AIDS and their families, at an informative stage prior to intervention development. This process of community consultation, combined with attending to core characteristics of successful interventions, yielded remarkably high rates of retention, overcoming previously noted barriers to palliative care research.37
FACE demonstrated feasibility, enrolling the targeted sample size and yielding a high rate of satisfaction for African American families, who generally have been underrepresented in EOL research (NIH State of the Science Conference Statement on Improving End-of-Life Care, December 6–8, 2004). The adaptation of the sessions to be culturally sensitive through a process of community review38–43
was successful. African Americans historically have experienced discrimination by health care institutions44
and may interpret discussion of do-not-resuscitate (DNR) orders as euthanasia or an attempt to deny beneficial care,45
which may account for the low levels of hospice care or use of DNRs among the 41 children who died during Pediatric AIDS Clinical Trials.46
By involving consumers, key stakeholders, and experts, FACE overcame the barriers that have been identified in adult African Americans who want more life-sustaining treatments, yet are less likely to have discussed life-sustaining treatments with their physicians and families.18,47
Communication and decision making are key factors affecting dying children and their families.48
Research in this area has been inhibited by the anxiety-provoking and sad nature of the topic.49
Consistent with previous research, the results of this study demonstrate the positive contribution of conversations about EOL care, providing a model for therapeutic benefit to families who want help with ACP.50,51
Contrary to our hypotheses, controls had higher negative ratings than intervention adolescents. Qualitative feedback suggests conflict emerged for controls, e.g., one youth revealed he had a housekeeper while attending college; his mother objected. Another did not realize how much education becoming an architect required.
This study had limitations. Focus group results were not formally analyzed. Only those families ready to discuss ACP agreed to participate potentially creating selection bias; however, our intention was to respect families' choices by working only with those who expressed interest and readiness. Sustainability of FACE is unknown, as is the value of these earlier conversations for respecting choices when dying. FACE took place in clinics that serve a predominantly African American population residing in urban areas and may not generalize. We do not know anything about families who declined participation or those who could not identify a surrogate. Research subjects, interviewers, and research assistants were not blinded to condition, potentially introducing bias.
As with adult studies,18–22
future research should explore the adaptation of the FACE intervention with adolescents suffering from other life-limiting conditions and from other cultural groups. The World Health Organization52
advocates palliative care as an essential component of HIV from the point of diagnosis to the end of life and into bereavement. Our findings provide support for the continued development of an ongoing process, initiated early and maintained throughout an illness, to help adolescents and their families face EOL decision-making together.