Despite the dramatic improvements in disease management and treatment options for individuals with hepatitis C there remains an increasing incidence globally of individuals suffering from end stage liver disease (ESLD). While liver transplantation is a potential option for some individuals, many die waiting for organ availability while others are deemed not a viable candidate for various reasons. End stage liver disease patients have multiple symptoms such as ascites, pain, fatigue, confusion and gastrointestinal bleeds which impact their health related quality of life and require intensive medical management. Mortality rates are 50% at 5 years and often require frequent clinic visits and hospitalizations. There is little to no guidance in the liver disease management guidelines for palliative care and end of life care for these individuals.
Heart failure guidelines were first published in 1994. In the following decades significant therapy options such as the emergence of left ventricular assist devices (LVADs) offered advanced therapy for end stage patients. Many of the guidelines have seen a steady increase in end of life and palliative care content concurrent with medical advances. Liver disease management has been focused on early identification and therapy intervention to reduce the impact on the functioning of the organ; however, late stage end organ damage remains common, especially in the setting of non-alcoholic fatty liver disease (NAFLD/NASH) with prevalence rates skyrocketing across the world. The nursing professional is a key provider of care to these patients and families and is in a vital position to make a difference in the quality of life.
The purpose of the study was to trace the development of palliative care content in heart failure guidelines during a period of remarkable progress in treatment with a focus on development of palliative care content in end stage liver disease guidelines.
Sixteen major North American and European heart failure guidelines published between 1994 and 2016 were examined for palliative content and compared to end stage liver disease guidelines as published by the American Association for the Study of Liver Diseases (AASLD) and the European Association of Liver Diseases (EASL). Keywords and content domains were determined from the guidelines. Characteristics of end stage heart failure and end stage liver disease were also compared in order to determine which content domains in the heart failure guidelines concerning end of life and palliative care apply to end stage liver disease.
Content domains addressed in the health failure guidelines include prognosis, provider/patient/family communication, advance directives, identification of end stage therapies, symptom palliation, device deactivation, family/caregiver support, hospice/palliative care and advance therapies. The majority of these content domains are applicable to the end stage liver disease individual. However, most of the liver related guidelines do not address these content domains for the end stage individual.
The study allows for the assessment of models for possible integration of palliative care used in heart failure to inform the management of the end stage liver disease individual. Further palliative guideline development in the ESLD patient will require research to build an evidence base, to foster translation into practice, and to help ensure this need in the setting of ESLD is met.