Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care.

Journal Article (Journal Article)

The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.

Full Text

Duke Authors

Cited Authors

  • Koch, A; Grier, K

Published Date

  • August 2020

Published In

Volume / Issue

  • 22 / 4

Start / End Page

  • 270 - 275

PubMed ID

  • 32412925

Electronic International Standard Serial Number (EISSN)

  • 1539-0705

International Standard Serial Number (ISSN)

  • 1522-2179

Digital Object Identifier (DOI)

  • 10.1097/njh.0000000000000654


  • eng