FAmily-CEntered (FACE) Advance Care Planning

FAmily-CEntered (FACE) Advance Care Planning facilitates courageous conversations about treatment preferences for future medical conditions through a series of 60-minute structured weekly sessions. Conversations are facilitated with the help of a trained, certified facilitator. Adolescents and adults living with a serious medical condition participate with their chosen surrogate decision-maker (or their legal guardian if they are under 18 years old). First, dyads complete the Lyon Advance Care Planning Survey to determine the patient's palliative care needs and to determine if the surrogate knows the needs of the patient. Second, dyads come together for a facilitated conversation about shared decision-making. This conversation provides an opportunity to express fears, values, spiritual and other beliefs, and goals with regards to death and dying. Lastly, the patient completes The Five Wishes, a legal document that helps a person express how she wants to be treated if she were seriously ill and unable to speak for herself.

The goal of FACE-ACP is to give adolescents and adults living with a serious medical condition a voice by facilitating conversations between patients and their caregivers so they can achieve their goals and match medical treatment to their goals.

A randomized controlled trial of patients in a pediatric oncology program who participated in FACE-ACP showed that adolescents and young adults are capable of participating in and understanding the consequences of their decision(s), value autonomous decision making without excluding loved ones, and want to participate in shared decision making. Patients who received FACE-ACP counseling expressed higher congruence in decision-making with their families and were more likely to limit treatments with marginal outcomes. Program participation enabled families to honor their loved one's wishes regarding resuscitation, the place of their loved one's death, and pain control. These findings suggest a potential for avoiding conflict during a medical crisis.