Pediatric Palliative Care: Where Are We Now?

Tina M. Schwartz; Stephanie Chalupka

Disclosures

Pediatr Nurs. 2019;45(5):224-230. 

In This Article

Abstract and Introduction

Abstract

The death of a child is a life-changing and tragic experience for not only families, but also caregivers involved in the final moments of the child's life. Although there have been numerous advances in medical technology, thousands of children continue to die annually. The first year of life has the most substantial number of death rates. Children and youth with special needs include those who have or are at increased risk for chronic physical, developmental, or emotional conditions. These children require health-related and other services beyond those generally required, and one such service might be pediatric palliative care (PPC). The purpose of PPC is to deliver competent, compassionate, and consistent care to the child facing a life-limiting illness. The current state of delivery of PPC is researched with documented outcomes. There is still much work to be done concerning standardization of PPC. This article reviews best practice surrounding PPC and barriers to implementation. The medical ethics of PPC, improving patient outcomes, and the defining traits of a successful PPC program are discussed.

Introduction

Palliative care focuses on the prevention and relief of pain and suffering while supporting the best quality of life (QOL) for patients with life-threatening illnesses (Centers for Disease Control and Prevention, 2018). Pediatric palliative care (PPC) is intended to comfort and support both the child and family. Therapies should include assisting children and families in fulfilling their physical, psychological, developmental, and spiritual beliefs and practices (National Hospice and Palliative Care Organization, 2009). Despite well-documented benefits, including improved symptom management, QOL, and less depression and symptom burden, PPC continues to be underutilized, leaving many children and families without the care they desire (Hsu et al., 2017; Stanton & Rutherford, 2005).

The death of a child is a devastating and unnatural event as no parent ever expects to have to bury their child. Although there have been numerous advances in medical technology, thousands of children continue to die annually (Stayer, 2012). The first year of life has the most substantial number of deaths. There was a rate of 5.79 deaths per 1,000 births in 2017 (Kochanek, Murphy, Xu, & Arias, 2019). One out of every 270 infants in the United States died before his or her first birthday, and one out of every 1,438 Americans aged 15 to 24 years died (Leyenaar & Bogetz, 2018).

Children and youth with special needs include those who have or are at increased risk for chronic physical, developmental, or emotional conditions. These children also require health-related and other services beyond those required by otherwise healthy children. In 2010, the National Survey of Children with Special Health Care Needs (NS-CSHCN) determined that nationally, 11.2 million children have a special care need. Of those children, approximately 5.6 million receive an average of 5.1 hours of family-provided health care per week for a yearly total of 1.5 billion hours of care. (Romley et al., 2017). CSHCN have three times the health expenditures of other children, and this can take an emotional, physical, psychological, and financial toll on their family caregivers. This has been associated with increased caregiver stress, morbidity, and mortality (Romley et al., 2017).

The current state of delivery of PPC has been researched more extensively over the last 10 years. Multiple studies have shown that despite strides in the treatment of pediatric patients with different illnesses, a lack of attention of the psychosocial aspects of illness typically results in inadequate care for both patients and families within our current health care system (O'Shea & Kanarek, 2013). There is a desperate need to improve palliative care for pediatric patients and families to support physical, emotional, cultural, and psychosocial needs both during illness and at the end-of-life, should that become the case (O'Shea & Kanarek, 2013).

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