Table C.1.

FAmily CEntered (FACE) Advance Care Planning Intervention

FOUNDATION:Session     1 Lyon Family Centered Advance Care Planning (ACP) Survey © [15] - Adolescent and Surrogate Versions to increase which engages the participant in EOL questions.	GOALS:    Session 1 To assess the adolescents’ and surrogates’ values, spiritual and other beliefs, and life experiences with illness and EOL care To assess when to initiate EOL discussion and planning.	PROCESS:    Session 1 RA orients family to study and issues Adolescent is surveyed separately from the Surrogate in a private room; Surrogate is surveyed privately with regard to what they believe their adolescent prefers; RA brings family together and prepares family for Session 2.
Session 2 Disease-Specific Advance Care Planning (DS ACP) Interview® [34]	Session 2 To facilitate conversations and shared decision-making between the adolescent and guardian/surrogate about palliative care, providing an opportunity to express fears, values, spiritual and other beliefs and goals with regard to death and dying To prepare the guardian/surrogate to be able to fully represent the adolescent’s wishes	Session 2* Stage 1 assesses the adolescent’s understanding of current medical condition, prognosis, complications; Stage 2 explores adolescent’s philosophy regarding EOL decision-making and their understanding of the facts; Stage 3 reviews rationale for future medical decisions the adolescent would want the surrogate to understand/act on; Stage 4 uses the Statement of Treatment Preferences to describe clinical situations common to AIDS and related treatment choices; Stage 5 summarizes the discussion/ need for future discussions as situations/preferences change. Gaps in information are identified and referrals are made. *This session will be videotaped and/or audio-recorded
Session 3 The Five Wishes® [85] is a legal document that helps a person express how they want to be treated if they are seriously ill and unable to speak for him/herself. Unique among living will and health agent forms - it looks to all of a person's needs: medical, personal, emotional, spiritual. citation	Session 3 Identify which person the teen wants to make health care decisions for him/her; Discuss the kind of medical treatment the teen wants; Discuss how comfortable the teen wants to be; Discuss how the teen wants people to treat him/her. Review what teen wants loved ones to know; Discuss any spiritual or religious concerns teen may have.	Session 3* For adolescents under the age of 18, the Five Wishes © must be signed by their legal guardian. Processes, such as labeling feelings and concerns, as well as finding solutions to any identified problem, are facilitated. Appropriate referrals are made to help resolve disagreements over decision-making (e.g. a hospital ethicist or their doctor) or spiritual issues (e.g. a hospital chaplain or their clergy). *These sessions may include other family members or loved ones.