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Supportive and palliative care of children with metabolic and neurological diseases

Julie M Hauer1, Joanne Wolfe

  • 1aDivision of General Pediatrics bDivision of Oncology, Boston Children's Hospital cDepartment of Psychosocial Oncology and Palliative Care, Division of Pediatric Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Current Opinion in Supportive and Palliative Care
|July 9, 2014
PubMed

Insights

Pediatric palliative care (PPC) offers significant benefits for children with metabolic and neurological diseases, improving communication, decision-making, and quality of life. PPC programs address physical discomfort and enhance family certainty throughout the illness trajectory and bereavement.

Area of Science:

  • Pediatrics
  • Palliative Care
  • Neurology
  • Metabolic Disorders

Background:

  • Pediatric palliative care (PPC) literature is expanding but remains limited for children with complex metabolic and neurological conditions.
  • Existing evidence highlights the benefits of PPC in improving care for these vulnerable populations.

Purpose of the Study:

  • To review the current literature on the role and impact of pediatric palliative care (PPC) for children diagnosed with metabolic and neurological diseases.
  • To provide a framework for addressing the specific palliative care needs of this patient group.

Main Methods:

  • Literature review of existing studies and evidence on pediatric palliative care.
  • Analysis of the benefits and challenges associated with PPC utilization in pediatric metabolic and neurological diseases.

Main Results:

  • PPC programs enhance family communication, decision-making certainty, and emotional well-being.
  • Utilization of PPC can lead to fewer invasive end-of-life interventions and influence the location of death.
  • Barriers to PPC include concerns about diminishing hope and prognostic uncertainty, particularly challenging in metabolic and neurological conditions.

Conclusions:

  • Pediatric palliative care effectively reduces physical discomfort in children with metabolic and neurological diseases.
  • PPC enhances parental certainty in decision-making and addresses needs across the illness trajectory, including bereavement.
  • The increasing availability of PPC programs is improving comprehensive care for these children and their families.
Abstract

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