The Best End-of-Life Care Begins With TRUTH

Area of Science:

• Healthcare Research
• Qualitative Psychology
• Family Studies

Background:

• Decades of research advocate for truth and transparency in end-of-life care discussions.
• Family-centered care is crucial, as a patient's individuality is inseparable from their family connections.
• Current practices often fail to align with recommended patient and family-centered care approaches.

Purpose of the Study:

• To explore the lived experiences of families navigating end-of-life care.
• To identify discrepancies between recommended practices and actual implementation in end-of-life care.
• To understand the impact of care practices on family trauma and decision-making.

Main Methods:

• Qualitative descriptive design utilizing snowball sampling for participant recruitment.
• Semi-structured interviews (approx. 90 minutes) with community members experienced in end-of-life care.
• Line-by-line analysis of transcribed interviews to identify themes and subthemes, supported by literature review.

Main Results:

• Families undergoing end-of-life care frequently experience acute trauma, significantly impairing information processing and decision-making.
• The psychological impact of trauma prevents individuals from making sound decisions during critical end-of-life periods.
• Effective end-of-life care necessitates a family-centered approach, recognizing that patient well-being is intrinsically linked to family care.

Conclusions:

• Despite recommendations for truth and transparency, these principles are often not implemented in practice during end-of-life care.
• The gap between recommended and actual practices contributes to the traumatization of families at the end of life.
• Further research is essential to understand this practice gap and develop strategies to improve end-of-life care delivery for families.