Beyond the Diagnosis: A Deep Dive Into the End Stage Liver Disease Experience From the Patient Perspective
Department
Internal Medicine
Additional Department
Gastroenterology
Document Type
Article
Publication Title
The American Journal of Hospice & Palliative Care
Abstract
Introduction: End-stage liver disease (ESLD) presents a multifaceted challenge that encompasses not only physical but also emotional, psychological, and social dimensions. This study aims to explore the experiences of ESLD patients within the United States healthcare system.
Methods: Utilizing a convenience sampling methodology, 15 ESLD patients from a tertiary care hospital in the USA participated in semi-structured interviews between April 2023 and January 2024. Data analysis was conducted using MAXQDA 2023, employing a phenomenological approach to identify common themes.
Results: The study identified six primary themes: the significance of communication style in diagnosis delivery, the crucial role of family and social support, varied understanding and preferences for palliative care, diverse attitudes towards advanced care planning, preferences for coordinated healthcare experiences, and the emotional and psychological impact of ESLD.
Conclusion: Our study underscores the complexity of ESLD patient care beyond medical treatment, highlighting the importance of clear communication, empathetic care, and the integration of family and palliative care services.
First Page
389
Last Page
395
DOI
10.1177/10499091241256629
Volume
42
Issue
4
Publication Date
4-1-2025
Medical Subject Headings
Humans; Male; Palliative Care (psychology); Female; Middle Aged; Aged; Communication; End Stage Liver Disease (psychology); Social Support; Interviews as Topic; Adult; Qualitative Research; United States; Family (psychology); Aged, 80 and over
PubMed ID
38780457
Recommended Citation
Malik, S., Arutla, V., Alamin, T., Warraich, F., Syed, T. A., Nepal, M., Ashraf, M. F., & Dunnigan, K. J. (2025). Beyond the Diagnosis: A Deep Dive Into the End Stage Liver Disease Experience From the Patient Perspective. The American Journal of Hospice & Palliative Care, 42 (4), 389-395. https://doi.org/10.1177/10499091241256629