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This study evaluated the implementation of Disease Specific Advance Care Planning (DS-ACP) for heart failure patients in a large health care system. The DS-ACP model uses a trained facilitator to guide communication between patient and proxy regarding patient values and goals for treatment in worst-case scenarios, develop a disease specific documentation plan, and identify needed resources. A chart audit was completed on a sample of patients to examine differences in advance care planning documentation between participants and nonparticipants. Nearly one third (31.8%) of the 1,894 heart failure patients referred to DS-ACP participated. Referral method was associated with participation. A chart audit revealed 94.3% of those completing the DS-ACP process, had a health directive compared to 24.8% of noncompleters (p<0.001). Of the patients who died by the end of the study period (n=286), DS-ACP participants were more likely to have used hospice compared to nonparticipants (56% versus 37%, p=0.002).These initial evaluation results indicate the DS-ACP model, previously tested in randomized trials, can be successfully implemented among heart failure patients in a large health care system. Results demonstrate the importance of referral method and show initial positive results for participation, improved documentation, and hospice use.

Small pilot study supporting the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). A randomized controlled trial was conducted at 6 US urban hospitals where adolescent/family member dyads were randomized to receive the 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention or active comparator. Enrollees consisted of 53% of eligible participants with 97 adolescent/family dyads. Satisfaction Questionnaires were administered at each session. Conclusion: FACE enabled worthwhile conversations, while simultaneously eliciting.

This randomized controlled trial in a pediatric oncology program focused on the needs of 60 adolescent oncology patients for participation in Advance Care Planning to examine the efficacy of family-centered ACP. The goal was to test a model of ACP that anticipates these issues, fully empowers the family and adolescent, and keeps the key role of health care professionals central. Participants aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study in 2011/12. Intervention dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information. This study found that family-centered advance care planning enabled families to understand and honor their terminally-ill adolescents’ wishes and to lessen suffering and improve quality of life. Family-centered ACP facilitated access to ACP for adolescents and African American families, may potentially decrease health disparities. This study suggests that family-centered ACP may be a model for a system change to implement to existing American Academy of Pediatrics and Institute of Medicine recommendations.

A randomized controlled trial was conductedwith 313 individuals from two centers in Wisconsin with congestive heart failure or end-stage renal disease and their surrogates who were randomized to receive patient-centered advance care planning (PC-ACP) or usual care (standard AD counseling). PC-ACP interviews were conducted by trained facilitators. 110 individuals died before the end of the study. Days from entry into the study until death ranged from 19 to 997 (control) and 5 to 1,010 (intervention). Concordance of documented patient preferences and care received at the end of life was evaluated through surrogate interviews or medical charts. 74% of patients continued to make their own decisions about care to the end. Care received matched initial choices for 46 of the 62 intervention patients (74.1%) and for 30 of 48 control patients (62%). This study demonstrated that when disease-specific planning is done, the patient and surrogate are being helped to face future decisions in a more informed and prepared way.