The ethical issues that arise in patients with ESLD are particularly challenging based on the demographics of the patient population. Patients with alcoholism or viral hepatitis, major etiologies for cirrhosis with ESLD, are generally populations with a high proportion of individuals from racial minorities and/or lower socioeconomic status, with substance abuse, or diverse religious and cultural preferences, not indigenous to the areas to which they have immigrated. In addition, the aging cohort of patients with viral hepatitis B and C, particularly in North America and Europe, is resulting in an aging population of patients with ESLD with other comorbidities. This demography makes it difficult for us to conduct our four topics assessment. We have to consider quality of life or contextual features that might include homelessness, single-parent families, and very limited finances, as part of “normal” life, or patient preferences in the setting of foreign cultural standards and unfamiliar religious beliefs.

The ethical issues assessment and plan are further complicated by the frequent presence of hepatic encephalopathy (HE). The complex relationship between HE, cognitive function, and even socioeconomic status [5] makes the patient with ESLD particularly difficult to assess. The impact of HE on higher cognitive functioning involving insight and abstract thinking may make it impossible to engage the patient in discussions of patient preferences, to establish a respect for autonomy. Here, the initial question should be “is the patient competent, meeting both ethical and legal standards of capacity”? Similar to evaluating testamentary capacity, consideration should be given to ensure that the patient understands exactly what implications arise from their preferences for treatment (analogous to an understanding of the extent and value of property for a will). This may be difficult even for a patient with minimal HE. Furthermore, the fluctuating nature of HE potentially creates a changing platform of the patient’s wishes—at one time expressing a need to do nothing, the next time requesting a need to do everything. This reinforces the importance of early advance directives formulated at a time before any HE supervenes (preferably before the onset of any non-HE complication). Unfortunately, this is rarely done and the need for identifying a surrogate medical decision maker, based on local legal requirements, is often executed during an acute crisis. That this occurs frequently and is associated with adverse effects, is suggested by some data indicating that the surrogate may express preferences that do not align with what the patient would have preferred in over one third of cases [6].

The nature of liver disease also interferes with “the quality-of-life box” for patients with ESLD. Patients with ESLD historically have been perceived to have a poor outcome, surrounded by “therapeutic pessimism” [7]. Although it is something every hepatologist has encountered, there is little discussion about the prejudice that may be encountered when transferring a patient to the intensive care unit (ICU) or requesting an advanced therapeutic procedure. While arguably justified in the past, significant advances in the critical care of patients with ESLD have been made and must be incorporated into our four topics ethics discussions [7]. These advances, particularly LT, do create some other problems, however. The opportunity for LT, and the hope springing eternally for its possibility in an individual case, have led to little thought being given to palliative care and end-of-life (EOL) planning in patients with ESLD [8]. Compared to other disease states, patients with ESLD receive more aggressive care towards the EOL when LT is available [9]. It is not clear whether this is appropriate in all cases; there may be futile treatment continuing when transplantation is available but not a realistic possibility. Accordingly, palliative care and EOL planning, an important component of patient autonomy, is overlooked. In contrast to the hope springing eternally when transplant remains a possibility, it appears to be quickly abandoned when a patient is removed from the waiting list—in one study only 10 % of patients removed from the wait list were referred for palliative care and EOL planning [10]. Palliative care planning, and often its provision, should be an early part of the care of patients with ESLD, even while they are on the transplant waiting list and certainly when they are not [11, 12]. EOL planning should be discussed at the first complication of ESLD in view of the fact that survival estimates after the first complication are generally in the 6–24 months range [13].

A key component of the information required for optimal clinical ethical case analysis is the ability to provide reliable prognostic information; prognosis touches every one of the four boxes. This information is crucial to allowing the patient to make a decision about treatment preferences (autonomy) and planning for quality of life ; it is a cornerstone for a discussion of medical indications (beneficence, nonmaleficence) and has major implications for resource allocations and finances, important components of contextual features (loyalty and fairness). While prognostic models are available, the fluctuating severity of ESLD makes prognostication especially difficult for those patients who are critically ill. In addition to its medical importance, we must improve our ability to “…define the archetypical illness trajectory of ESLD…” [12] to facilitate ethical analysis. Critical analysis of various prognostic scores suggests that that the Child-Pugh-Turcotte score is not adequate, the model for end-stage liver disease (MELD) score is marginally better, and that a liver disease-specific modification of the sequential organ failure assessment (SOFA) score, the chronic liver failure SOFA (CLIF-SOFA) score is the best currently available prognostic score [7, 14] . Reevaluating prognosis after 48 hours of initial intensive care treatment may improve prognostic accuracy [7] and should prompt another discussion with the patient, or usually a surrogate decision maker, at this time. Prognostication, avoiding the tendency to unrealistically overemphasize the possibility of LT, is crucial for discussions of futility and the withdrawal of care. Limited guidelines exist and suggest that the first 48–72 h in the ICU is the time period after which a review for futility and the withdrawal of care should be considered in certain patients [15]. Full transparency and regular communications between all health-care providers, particularly the critical care staff and the hepatology team, is of paramount importance to see that all clinical information relevant to prognosis is discussed and entered into a regularly updated four topics analysis.

While it is not clear how often significant ethical issues actually arise during the care of patients with ESLD, or the planning of policies surrounding the delivery of their health care, there have been some particularly challenging specific issues. These include possible bias against ESLD patients with alcoholism and drug abuse, LT for alcoholic hepatitis, legal medical and nonmedical marijuana use in the patient with ESLD and the challenge of developing an equitable efficient system of organ allocation for LT.