Advance Care Planning in Liver Transplant—Preparing for Both Life and Death

Patients with a diagnosis of decompensated cirrhosis experience high morbidity and have a median life expectancy of approximately 2 years in the absence of a liver transplant.¹ Although thousands of patients receive a life-saving liver transplant every year, many thousands more die from complications of liver failure. Despite their poor prognosis, patients with decompensated cirrhosis are more likely to receive intensive and costly care during their last months of life compared with patients with other chronic life-limiting conditions.² This finding suggests that patients with decompensated cirrhosis may have unique experiences within the health care system that make them particularly vulnerable to receiving high-intensity care at the end of life. Advance care planning (ACP), the process by which patients and their families prepare for decision-making for future medical care that is consistent with their goals, values, and preferences, has been associated with reduced emotional distress and health care use at the end of life for patients with serious illnesses.³ However, previous work has shown that hepatology clinicians rarely engage patients with decompensated cirrhosis in ACP.^4,5

In this issue of JAMA Internal Medicine, Patel and colleagues⁶ report the results of a qualitative study of the experience of ACP that was conducted through interviews with 42 patients with decompensated cirrhosis and 46 clinicians across 3 liver transplant centers. Several key findings emerged from these interviews. First, patients with decompensated cirrhosis were open to engaging in discussions regarding end-of-life care, but these discussions were rarely initiated by their transplant center clinicians and primarily occurred during acute illness. Second, when clinicians initiated prognostic discussions with patients, these conversations centered on promoting behavioral change to maintain the hope for a liver transplant rather than exploring patients’ goals and values to guide their decision-making if a transplant was no longer an option. Third, clinicians frequently reinforced the need for patients to be full code (or to allow all resuscitation efforts to be kept alive) to pursue a liver transplant. Fourth, surrogate decision makers were underprepared for their critical role in choosing options for medical care for patients who were approaching the end of life.

A central point that emerged from these findings was that the current process of ACP for patients with decompensated cirrhosis has 1 goal, a liver transplant, that is at the expense of preparing patients for complex medical decision-making over the course of their illness, including at the end of life. This singular focus on a liver transplant by transplant center clinicians may be associated with the unique clinical characteristics of patients with decompensated cirrhosis. Unlike the availability of left ventricular assist devices for patients with advanced heart failure or dialysis for patients with chronic kidney disease, patients with decompensated cirrhosis have no well-accepted bridge to a transplant. In turn, clinicians may believe that patients with decompensated cirrhosis have only 1 of 2 options, either to undergo a curative liver transplant or die from complications of liver failure. This false dichotomy of life or death is reflected in the common requirement for patients on the liver transplant waiting list to remain full code at most transplant centers, which necessarily precludes ACP discussions to assess patient goals for end-of-life care.⁵ In addition, the central focus on liver transplant may delay clinicians from proactively assessing the treatment preferences of patients with decompensated cirrhosis outside of the surgery itself, leaving patients and their families ill-equipped to make future medical decisions.

The study by Patel and colleagues⁶ has several methodological strengths that merit discussion. The authors captured the rich perspectives of both patients and clinicians by using a qualitative approach, expanding on previous survey-based quantitative research that explored barriers to ACP in decompensated cirrhosis.⁵ Using rigorous qualitative methodologies to identify barriers and facilitators to ACP in this population, as the investigators have done in this study, is critical to developing interventions that support patients with decompensated cirrhosis in their planning for future medical care. This work by Patel and colleagues⁶ is particularly novel because it captured the voices of patients at various stages of the transplant spectrum as well as clinicians from multiple disciplines, including hepatology, transplant surgery, social work, and critical care. In doing so, the authors highlighted 2 challenges to ACP in this population that will need to be addressed in future investigations. First, patients with decompensated cirrhosis have varying needs that depend on where they are in their illness trajectory; thus, approaches to ACP cannot be one size fits all and instead must be flexible and tailored to different phases of their illness. Second, the team-based approach of liver transplant means that patients with decompensated cirrhosis interface with many clinicians who may have differing perspectives on ACP, which has the potential to lead to inconsistent messaging to patients and families.

The foundational work of Patel and colleagues⁶ serves as a call to action for the field of hepatology to invest in developing patient-centered approaches to address current deficits in ACP for patients with decompensated cirrhosis. Future areas of investigation should include the lived experiences of primary caregivers of patients with decompensated cirrhosis, who must often serve as surrogate decision makers early in the disease trajectory when the patient has developed hepatic encephalopathy, experiences that are not unlike those of caregivers of persons with dementia. In this study, nearly half of the recruited patients were from racial/ethnic minority groups; more work is needed to explore the perspectives of diverse populations to create culturally relevant approaches to ACP. Future work in ACP must shift the limited scope of the liver transplant procedure itself to prepare patients with decompensated cirrhosis and their families in the many medical decisions they will face over the course of their illness. Because patients with decompensated cirrhosis face unique challenges that are associated with their unpredictable clinical trajectory, supporting their medical decision-making requires iterative and adaptive approaches to ACP. The often-unanticipated clinical decompensations of patients with decompensated cirrhosis underscore an additional need for dynamic approaches to not only ACP but also acute care planning in this population. For example, an acute clinical deterioration could render a patient who was previously active on the transplant waiting list to suddenly become too sick for transplant. A hospitalization for acute kidney injury may require proactive reassessment of a patient’s values and goals of care, which may shift when considering the initiation of dialysis in the face of limited life expectancy. The possibility of acute variceal hemorrhage as a terminal event for an imminently dying patient may shift patient and family preferences for location of death away from the home to a clinical setting that could provide additional support at the end of life. These scenarios underscore the importance of developing interventions that enhance clinician communication with patients with decompensated cirrhosis and their families to support both anticipatory and in-the-moment medical decision-making in the acute care setting.

Future interventions should build on the results of the study by Patel and colleagues⁶ to enhance the illness and prognostic understanding of patients with decompensated cirrhosis and their primary caregivers. Such understanding can ensure that patients receive care that is consistent with their goals, values, and preferences over the spectrum of their illness experience and that improves their quality of life and end-of-life care.