Accompanying Children Through the Life Journey

Introduction

Childhood palliative care, as defined by the World Health Organization in 1982, involves providing comprehensive assessment and care for a child's physical, emotional, and spiritual well-being from the onset of a life-threatening illness. It also involves the use of integrated, interdisciplinary care to alleviate a child's physical, psychological, and social distress and to strengthen support and assistance for the family. In order to enhance pediatric care, National Taiwan University Children's Hospital established the Pediatric Palliative Care Integrated Care Team in 2010, which provides family-centered care with a focus on the child, assists with optimal symptom management, and provides support to children with life-limiting illnesses and their families. The team also works with families to understand the child's health status, family evaluation, values, and preferences, and collaborates with the child and family to develop a care plan. The core goal is to provide services to children and families in various disease stages, including disease adjustment, caregiver support, sibling communication and care, home medical devices preparation, discharge planning, home care, medical transfer, and grief support. The team provides individualized care activities through interdisciplinary collaboration to help children receive optimal medical care and maximize their quality of life during their illness. The aim is to achieve high-quality pediatric care through palliative care for the whole person, family, and comprehensive care, and to engage in domestic and international education and related training activities for childhood palliative care.

Goals and Tasks

Palliative care emphasizes a holistic approach, focus on the child and together with their family at the center, aiming to assist in optimizing symptom management and providing assistance and support to children with serious illnesses and their family members in the end stages of their disease. The core goal is to provide services for children and families at different stages of illness, including disease adjustment, caregiver and family mental and emotional support, sibling communication and care, assistive device preparation, discharge planning, home care, medical referrals, and grief counseling, etc. This helps children receive the best possible medical care and maintain the highest possible quality of life during the illness process.

Members

The primary care team physician, pediatric palliative care physician, nurses, palliative care shared care nurse, nursing supervisor, case manager nurse, child life specialist, art therapist, music therapist, dance therapist, clown care doctor, social worker, clinical psychologist, clinical bedside teacher, spiritual care provider, nutritionist, physical therapist, and many other professionals.