Relational, Ethical, and Care Challenges in ALS: A Systematic Review and Qualitative Metasynthesis of Nurses’ Perspectives

TL;DR

This study explores the emotional, ethical, and relational challenges nurses face in caring for ALS patients and highlights the need for better palliative care training and support.

Contribution

The study provides a novel qualitative synthesis of nurses’ experiences in ALS care, focusing on relational, ethical, and palliative dimensions.

Findings

Nurses encounter communication barriers and emphasize the importance of relational trust in ALS care.

Palliative care integration and emotional demands are critical aspects of ALS nursing.

Ethical dilemmas around life-sustaining treatments and patient autonomy are prominent in ALS nursing.

Abstract

Background: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that leads to severe functional decline and death, imposing significant physical, emotional, and ethical burdens on patients and healthcare providers. With no curative treatment, ALS care depends on the early and sustained integration of palliative care to address complex and evolving needs. Nurses play a pivotal role in this process, yet their lived experiences remain underexplored. This study aimed to synthesize qualitative evidence on nurses’ experiences in ALS care, with a focus on emotional, ethical, and palliative dimensions. Methods: A meta-synthesis of qualitative studies was conducted using Sandelowski and Barroso’s four-step method. A systematic search across five databases identified eight studies exploring nurses’ experiences with ALS care. Thematic synthesis was applied to extract overarching patterns. Results: Three core themes emerged: (1) Relational Dimension: From challenges to empathy and Trust and mistrust—emphasizing communication barriers and the value of relational trust; (2) Care Dimension: Competence, Palliative care needs, and Rewarding complexity—highlighting the emotional demands of care, the need for timely palliative integration, and the professional meaning derived from ALS care; (3) Ethical Dimension: Medical interventionism and Patient-centered values—exploring dilemmas around life-sustaining treatments, patient autonomy, and end-of-life decisions. Conclusion: Nurses in ALS care face complex emotional and ethical challenges that call for strong institutional support and palliative training. Enhancing palliative care integration from diagnosis, alongside targeted education and psychological support, is crucial to improving care quality and sustaining the well-being of both patients and nurses.

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