The future of pediatric and perinatal palliative care should include accepting parents' need for proximity to the child, combining the strategies of palliative and intensive care physicians, improving healthcare providers' listening skills, and involving multiple disciplines, recommend researchers.
Their report reveals that palliative and end-of-life care for children and their families is underutilized and would benefit from expanding the number of staff with expertise in caring for children near death.
"Attitudes of healthcare providers, researchers, and IRB [institutional review board] members often present a huge barrier to conducting research about children and their families in this area," note Jonne Youngblut and Dorothy Brooten from Florida International University in Miami, USA.
More than 53,000 infant and child deaths occur in the USA annually, with 48% occurring in hospital, 86% of which are in neonatal or pediatric intensive care units (ICUs), notes the research team. Studies show that parents need to be physically close to their child during the dying process. Results disagree over whether parents should see/hold their dead child or baby's body, but are in agreement that parents need understandable information about their child's changing condition and treatment options.
Indeed, Danish research has shown that parents' mental and physical health is affected in bereavement such that mothers are at increased risk for psychiatric hospitalization, cancer, and Type 2 diabetes, while fathers are at increased risk for heavy alcohol use.
Integrating palliative and curative care can also be challenging, say Youngblut and Brooten, with critical-care providers often seeing palliative care as an alternative to aggressive, curative-focused ICU care. "The result is inadequate symptom management for dying children," they write in Nursing Outlook.
They make five recommendations for future research and practice:
- Palliative care should include proximity of parents to the dying child, giving frequent information on the child's condition, and remembering that parents are "ultimately responsible for their children."
- Joint clinical management by critical- and palliative-care teams early in the child's ICU course would decrease their suffering and provide resources to parents and families.
- Communications skills among healthcare professionals are crucial with special attention in the US to parents whose first language is not English.
- Continued education and more studies into resources needed by parents after the child's death and better reimbursement for this care.
- Involving scholars and clinicians from disciplines like anthropology and sociology to provide a richer understanding of pediatric palliative care.
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