Beyond the Diagnosis: A Deep Dive Into the End Stage Liver Disease Experience From the Patient Perspective

Authors

Sheza Malik, Rochester Regional HealthFollow
Venkat Arutla, Rochester Regional HealthFollow
Tariq Alamin, Rochester Regional HealthFollow
Fatima Warraich, Rochester Regional HealthFollow
Tausif A. Syed, Rochester Regional HealthFollow
Mahesh Nepal, Rochester Regional HealthFollow
Muhammad Farhan Ashraf, Rochester Regional HealthFollow
Karin J. Dunnigan, Rochester Regional HealthFollow

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