Advance Care Planning

Abstract

Advance care planning is the process by which a patient and family, in consultation with healthcare providers, make decisions about current and future health care [2]. It is regarded as the gold standard for all patients facing serious illness, including the pediatric population [5]. While historically advance care planning programs and research efforts centered on adult patients, and a predominantly geriatric population [5], these efforts have expanded to incorporate children and young adults, in concordance with the growth of pediatric palliative care programs [6]. Similarly, the model for advance care planning, which in its conception focused largely on completion of advance directives, now involves discussion of goals of care, patient and family values, systems of belief, and patient prognosis as they inform patient care and medical intervention [7]. The process of advance care planning occurs as an ongoing conversation, rather than a discrete or finite decision, and adapts alongside the trajectory of illness, in synchrony with patient and family goals. The American Academy of Pediatrics (AAP) Policy Statement on Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations states that the palliative care clinician should “facilitate clear, compassionate, and forthright discussions with patients and families about therapeutic goals and concerns, the benefits and burdens of specific therapies, and the value of advance care planning [8].” The policy statement emphasizes the importance of engaging in advance care planning over time, as an illness and treatment course evolves, and at least annually in the care of a child with a chronic, complex illness [8]. Advance care planning should begin early in the course of illness; should be shared among the patient, family, and healthcare provider; and should occur as a structured process [9, 10].