Primary pediatric palliative care: psychological and social support for children and families.

Abstract

1. Cassandra D. Hirsh, DO* 2. Sarah Friebert, MD* 1. *Haslinger Family Pediatric Palliative Care Center, Akron Children’s Hospital, Akron, OH Families of children with complex, chronic, and/or life-limiting conditions experience unmet psychological, emotional, practical, and spiritual needs. Primary care pediatricians may lack sufficient knowledge, training, and/or resources to address these needs; pediatric palliative care teams can offer additional support services to families. After completing this article, readers should be able to: 1. Recognize when a pediatric palliative care consultation would be appropriate to help the patient and family deal with psychosocial stressors related to diagnosis or illness. 2. Describe the roles of the various members of the palliative care interdisciplinary team in providing psychosocial and social support to a patient or family with a child who has a complex, chronic, or potentially life-limiting condition. 3. Understand the role overlap among various clinicians on a palliative care interdisciplinary team. Imagine 2 parents, Amy and Todd, sitting in a room in the pediatric intensive care unit. Their formerly healthy 2-month-old son, Jack, was recently diagnosed as having spinal muscular atrophy (SMA) type 1 during an admission for respiratory failure secondary to respiratory syncytial virus. He is now extubated and pain free, and his parents have met with the intensivist, neurologist, and pulmonologist regarding what SMA is and how Jack’s life will be affected. For the parents, many questions remain: How will we cope with the changes that are happening in our life? How will we afford the specialized care Jack will require? How will we be able to juggle work and other responsibilities to go to multiple medical appointments? Will this affect our marriage? Will this exacerbate our own medical conditions? How will we obtain the supplies we need to care for all of Jack’s …