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Children's Psychologist Leads Study on Advance Care Planning Conversations With Teens

Washington, DC – A new study led by Maureen Lyon, PhD, ABPP, Clinical Health Psychologist at Children’s National Health System, shows that the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention is "extremely effective" in navigating sensitive conversations about future medical treatment and end-of-life care.

The study, published in this month’s issue of Journal of Adolescent Health explored teens’ acceptance of advance care planning conversations; their emotional reactions in discussing death and dying; and the impact of these conversations on their quality of life and spiritual well-being three months after participation. FACE-TC is the first randomized controlled clinical trial of pediatric advance care planning involving teens with cancer.

Advance care planning conversations with their families not only demonstrated the completion of 100 percent of advance directives, but also demonstrated that both teens and their families found the experience worthwhile. These conversations did not raise symptoms of anxiety or depression in teens or their families, suggesting that having these conversations are safe and do not cause psychological harm. The adolescents’ experience in reflecting on death and dying resulted in high levels of peace and spirituality.

Advance care planning is a process of planning for future medical care in the event the patient is unable to make his or her own decisions. This dynamic process involves exploration of the patient’s understanding of their illness, reflections on their goals and values for their future medical care, and discussion of future treatment preferences. The collaborative communication builds a sense of trust between the patient, the physician and their families.

The advance care planning conversations and decisions with adolescents living with a life-threatening illness have often been avoided, postponed or thought of as "taboo." FACE-TC outlines a method of how facilitators and physicians alike can effectively bridge the communication gap to give teens a voice in their medical treatment at such a sensitive time.

Dr. Lyon’s study recruited adolescents ages 14 to 20 who were aware of their cancer diagnosis. The participating teens were in active or long-term care at Children’s National.

"Our results have important research as well as public health implications," Lyon and other researchers said. "Teens and their families accepted an approach which balanced the hope for a cure with a plan for the worse. FACE-TC overcomes many of the obstacles to (advanced-care planning), so that conflict may not emerge in the midst of a medical crisis."

A parent who participated with her son in the study expressed the value of their experience stating, "The questions asked were important questions, [I] had not thought about, and [I] can now discuss with [my] son."

Advance care planning is a dimension of palliative care, an approach to patient care that has been growing in importance in the context of a changing healthcare delivery system. Four in 5 children with complex chronic conditions in the U.S. die in the hospital. Among children with cancer, 72 percent of those without palliative care died in the Intensive Care Unit, versus 21 percent of those with palliative care.

The FACE-TC researchers note that facilitating advance care planning conversations with teens with cancer is important. Families often did not know what their teens wanted.

Contact: Emily Hartman or Joe Cantlupe at 202-476-4500.

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