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

Title

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

Creator

Koch A; Grier K

Publisher

Journal of Hospice & Palliative Nursing

Date

2020

Subject

communication; community-based palliative care; culture sensitivity; ethics; family planning; implicit bias; life-limiting diseases; moral distress; nurse; vulnerable populations

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

July 2020 List

Collection

Citation

Koch A; Grier K, “Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care,” Pediatric Palliative Care Library, accessed January 25, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17144.

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