6 months of probation: Taking care of someone with alcohol-related liver disease

“Are you my doctor?” Mary* asked me, as I, a resident physician, approached her bed.

“Yes, I am one of the primary medical doctors taking care of you here,” I confirmed with my standard, pre-scripted introduction — with little appreciation of the implications of these words.

Mary was a 30-something-year-old woman who transferred to our hospital due to worsening alcohol-related liver disease. She had struggled with anxiety and depression since her teenage years. Her parents separated when she was just a child. Through her father’s absence, Mary grew close with her mother, her grandparents, and, ultimately, her partner. And she was determined to take care of them, even when she was unable to care for herself.

As Mary got older, so did her physical and emotional distress. She developed body pains that impeded her ability to work and financial difficulties that impeded her ability to provide for her family. Her anxiety and depression abounded.

Throughout this time, Mary became increasingly dependent on alcohol. While she was able to maintain sobriety for months at a time, she always relapsed due to significant hardships — whether another job rejection or death of a relative. Her addiction became so debilitating that she was hospitalized multiple times within the past year with rapidly progressive liver disease. The only cure would be liver transplant — but she was ineligible.

Despite her qualification for transplant by any other measure, Mary was condemned to six-months of sobriety before she could be evaluated for transplant listing. She had only been sober for three.

As she waited, Mary’s liver quickly deteriorated. It was unable to synthesize protein, so she put on water weight; it was unable to remove toxins from her body, so her mental status waned.

Mary sought treatment at another hospital, where their objectives were straight-forward – remove the excess fluid, and improve her symptoms, remove the toxins, and regain her cognition.

But these processes require a fine balance — pull too little fluid off, and risk persistent discomfort, pull too much off, and risk kidney damage, potentially precipitating hepatorenal syndrome (HRS). Most patients with HRS die within weeks of diagnosis unless their liver failure is reversed.

It is this condition that Mary developed before I met her.

Day by day, we tracked the functioning of her kidney and her mind, tediously titrating medications that would hopefully buy her time. Until one day, when she stopped responding to us altogether.

We were losing Mary — and I, one of her “primary doctors,” was losing faith, caught between powerlessness and indignation. We are taught to see alcohol use disorder as a disease — caused in part by personal responsibility, but more so by a wave of genetic, molecular, and psychosocial determinants. Is it fair that when we do not treat the determinants, we refuse to treat the consequences? But even if we accept this “rule” — what if we robbed her of those three precious months she had left to prove sobriety, by hastening a deadly complication of her disease (HRS)? Surely, exceptions should be made for emergencies, particularly if medical miscalculation played a role.

Experts around the world have denounced the six-month sobriety rule as not evidence-based and detrimental to patient outcomes. Indeed, 70 percent of transplant centers in the U.S., including ours, have begun to make exceptions to the six-month rule in patients with alcoholic hepatitis (rarely end-stage liver disease, as in Mary’s case), so long as they have adequate social supports and commitment to abstinence.

But what does this mean, exactly — adequate social supports and commitment to abstinence?

Was Mary sufficiently “committed to abstinence?” In most of her providers’ views, the answer was no.

Yet to me, Mary’s record told a different story. That she was committed to abstinence; that she found adequate social support in her family. But that she also faced psychological and emotional burdens that exacerbated her underlying psychiatric conditions. That most recently, Mary was working hard to fight her addiction, allowing herself to receive instead of provide care.

When Mary arrived at our hospital, we asked whether she would meet our addictions specialists, to support her sobriety until transplant evaluation.

“I think that would be helpful,” she hesitated, “but I don’t think that would be helpful now…when I probably won’t have a long-term.” Mary recognized that what we had to offer was limited. She would not survive her disease, but more pressingly, she would not survive this hospitalization. Was it fair that she would be sentenced to death based on historical and systemic factors outside of her control?

As I tinkered with medications that would neither save her nor increase her comfort, I felt myself relinquish my role as her “primary doctor.” Mary was suffering now, but she had been suffering for much of her life — shunned by a health system ill-equipped to deal with psychiatric illness, substance use, and financial instability. Yet, armed with evidence — of scientific literature, medical missteps, and Mary’s life story — I had no say. She had no say.

As we finally wheeled her off to the ICU, I heard one physician reassure her family, “She is very sick; we’ll do everything we can,” But that wasn’t true, was it?

I would later learn that Mary’s liver created a domino effect of multiorgan failure that no medical intervention could overcome. Almost six months sober, she remained ineligible for transplant — the time she had spent in the hospital did not count. But what other options did she have?

I combed through every note written during her hospitalization, engulfed by a wave of powerlessness and remorse. Had I done enough? Had we all done enough? By never truly treating her comorbidities at any stage in her life, were we — her medical teams, the health care system, and society at large — not complicit in, if not responsible for, her ultimate death, days later?

* Patient identifying information changed.

Pooja Yerramilli is an internal medicine physician.

Image credit: Shutterstock.com

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