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The Patient's Story

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Ms F is a 55-year-old woman who was first diagnosed as having chronic hepatitis B virus (HBV) infection at the age of 42 years and was told her disease was "dormant." She most likely acquired the virus vertically (at birth).

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Thirteen years later, she underwent laparoscopic cholecystectomy for gallstones. At the time of her cholecystectomy, she was diagnosed as having cirrhosis. The surgery was complicated by hepatic decompensation with ascites, abdominal pain, peripheral edema, weight gain, and worsening liver function. Her prognostic Model for End-stage Liver Disease (MELD) score was 17, suggesting a 3-month mortality of approximately 7%. She began liver transplant evaluation and antiviral therapy with lamivudine. Because the HBV replication was controlled, she had significant improvement in her liver function (MELD score decreased to 11, suggesting a 3-month mortality of approximately 2%)1,2 and no longer required urgent liver transplantation.

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Later that year, Mrs F's HBV strain developed resistance to lamivudine. She was hospitalized with hepatic decompensation (MELD score of 18) from the subsequent hepatitis flare. Her antiviral medication was changed to adefovir, which successfully controlled her disease again. During the hepatitis flare, her serum -fetoprotein level was noted to be 80 ng/mL (reference range, < 8.5 ng/mL). She and her physicians discussed the possibility that she might have hepatocellular carcinoma (HCC) as a complication of HBV and cirrhosis. Imaging studies performed by her primary care physician suggested multiple liver lesions, consistent with HCC. Subsequent abdominal computed tomography (CT) examination confirmed only 3 lesions (3.0, 2.5, and 2.3 cm) consistent with HCC. She had no evidence of metastases, so she was placed on the liver transplantation list for stage II HCC, despite having compensated cirrhosis.

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Perspectives

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MS F: Actually, I didn't know that I had problems with the liver. I went to the doctor for…gallstones. During surgery,…a [liver] biopsy…said it was stage 4, grade 4. I didn't know what that meant…My [health maintenance organization] determined that it is [hepatitis] B cirrhosis. Then they referred me to the university hospital.

DR L: [S]he had chronic hepatitis B with cirrhosis but was really well compensated…She didn't have ascites, encephalopathy, synthetic dysfunction, or any [gastrointestinal] bleeding.

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Like Ms F, most patients with chronic liver disease feel well for decades—often not thinking about the possible outcomes of their disease.3 Symptoms of end-stage liver disease (ESLD) may present abruptly, as they did in this case. Once patients develop the numerous complications of ESLD, they are often frightened, wondering how they reached this point. Discussing end-of-life issues is often difficult and can be particularly challenging when patients are listed for transplantation because they face the risk of early death while often focusing their hope on the potential for a life-saving transplantation. Yet, good-quality palliative care is essential for these patients because of their burden of symptoms and the risk of death from their illness.3 In this chapter, we address the challenges of integrating palliative care into the pretransplantation setting and talking about the issues surrounding the potential need for end-of-life care with these patients and their families.

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Viral Hepatitis and ESLD

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Chronic viral hepatitis is defined as hepatitis that persists for more than 6 months. Hepatitis B and C viruses can cause chronic hepatitis (Table 16-1). Viral hepatitis is characterized by an ...

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