Last Medical Wishes

When I first met Penny* she was a 46-year-old lady admitted to our teaching service because of dyspnea, leg edema, and abdominal distension that evolved over two weeks. She had admitted to significant alcohol use until eight months before, as well as a history of intravenous drug use as a teenager. She had tested positive for hepatitis C (no cirrhosis then) nearly two years prior, but had neither received treatment nor entered primary care. During this hospital stay Penny was found to have cirrhosis and ascites, for which she responded to diuresis and paracentesis, and she was discharged to resume care in our resident continuity clinic. I monitored her clinical trajectory with a resident (an intern when we first met Penny), and alone when she walked into our faculty practice a little over two years later.

By this time she was in the care of our lead gastroenterologist; biopsy had confirmed cirrhosis, and she had failed antiviral therapy. She had remained abstinent from alcohol. She soon was making biannual visits to a liver transplant team over 100 miles away from home. She was interested in transplantation for the promise of relief of edema, ascites, and abdominal discomfort, but wondered if chronic immunosuppression would impinge on her quality of life or result in a significant increase in life expectancy.

Penny often spoke freely about her life experiences and concerns during her primary care visits, which were frequent over several months. After one visit she gave the nurse who wheeled her to her car her lighter and pack of cigarettes with intent to quit—and succeeded with this. She expressed two regrets:

• “I wish I was tested sooner (for hepatitis C).” (She recalled the indication for testing to be elevated liver enzymes, which she had been made aware of by a previous treating physician who was watching the trends in her numbers.)

• “I wouldn't have drank so much (alcohol) if I knew I had liver disease.”

Unfortunately, on subsequent testing she developed alpha-fetoprotein elevation; this was followed nine months later by detection of multiple hepatic lesions that appeared to be malignant on magnetic resonance imaging. She elected hospice care and died within four months.

Penny had been born between 1945 and 1965, an age bracket that includes 81% of all persons with chronic hepatitis C virus infection in the United States, ¹ many of whom are unaware of such infection. ² Reflecting on her Last Medical Wishes described above is helping me perform more indicated viral hepatitis screenings than I used to. Among patients with hepatitis C, a history of heavy alcohol use is common (more so in persons with a history of intravenous drug use), and such alcohol use appears to be responsible for progression to cirrhosis a third of the time. ³

I intend that my trainees, colleagues, and I continue to look for ways to emphasize appropriate screenings in our patient populations. Not just because guidelines say so, but because life stories may be positively altered. And thus Penny's Last Medical Wishes can be honored in patients coming to care after her.