A mom watched her daughter, 24, die from alcoholism. Now, hospitals are rethinking liver transplants for these patients
By Alexia Elejalde-Ruiz VIA Chicago Tribune
Since losing her daughter five years ago, Terri Oesterle has been speaking out about the challenges she endured. She speaks about her daughter’s alcohol addiction, the bullying she experienced, and the stigma around mental health. Lately, she’s also been speaking about liver transplants.
Chelsea Oesterle was 24 when she died of complications from acute alcoholic hepatitis, a liver inflammation brought on by drinking. During the nearly two months that Chelsea was hospitalized, her mother begged to have her put on the liver transplant waiting list. She never was, and her medical records suggest why.
“Not a transplant candidate due to her recent alcohol use,” the physician notes state.
For decades, it has been standard practice at most transplant centers in the U.S. to require people with alcoholic liver disease to be sober for six months before they can join the liver waiting list, a key reason being not to waste scarce organs on alcoholics who might relapse and ruin them.
Chelsea Oesterle, who didn’t know the toll her drinking was taking until her liver failed, didn’t have that kind of time. Her mother agonizes about what Chelsea could have done with her life had she “just been given that chance.”
Now some transplant centers in Chicago and across the country are giving patients like Chelsea that chance.
University of Chicago Medicine and Northwestern Memorial Hospital, two of the five adult liver transplant centers in Illinois, recently changed their six-month-sober policies so that select people with acute alcoholic hepatitis — a small subset of people with alcoholic liver disease — can be considered for transplants without undergoing a set period of abstinence.
“We are focusing more on other things that we think are equally or more important in determining if patients will have a good outcome,” said Dr. Anjana Pillai, a liver specialist at University of Chicago Medicine, which adopted its new protocol in December.
The principal driver of the changes is a landmark study published in 2011 in the New England Journal of Medicine that found transplanting certain alcoholic patients without six months of sobriety led to good survival outcomes and low alcohol relapse rates. The carefully selected test group included only people who had had no prior warning of liver disease, supportive social networks and other factors likely to help them stay healthy and sober.
Since then, several transplant centers in the U.S. have replicated the findings, and Johns Hopkins School of Medicine in Baltimore last month published what it says is the largest study to date on the issue. It found no significant difference in one-year survival or relapse rates between patients who abstained from alcohol for six months before being transplanted and patients who got transplanted earlier.
The majority of transplant centers continue to require a period of alcohol abstinence before doing liver transplants on alcoholics. But the findings have kicked off a growing movement to be more flexible.
“It’s a big deal because I think the transplant community is realizing we were being too restrictive previously and there are select patients we believe will do well after a very thorough evaluation,” said Dr. Josh Levitsky, a Northwestern University associate professor of medicine and past board member of the American Society of Transplantation.
The shift comes as the number of transplant patients with hepatitis C, historically the No. 1 diagnosis on the liver waitlist, declines thanks to improved treatment, making room for transplant centers to consider other candidates, Levitsky said.
Even so, the change is controversial. Organ shortages persist and thousands of people die while on the waiting list, including many whose liver disease was not caused by drinking.
Nearly 14,000 people are waiting for a liver nationally, but last year only 8,000 people got one, according to the United Network for Organ Sharing, the nonprofit that manages the nation’s organ transplant system. In Illinois as of Friday there were 345 people on the liver waiting list, but last year only 271 people got transplants.
United Network for Organ Sharing years ago opted not to recommend an exact timeframe for alcohol abstinence before liver transplantation, out of concern it would be interpreted as a medical directive, said spokesman Joel Newman. But many individual transplant centers have established six-month-sober rules to help their teams make the difficult choice of who gets a precious organ and who does not. Some insurance companies have similar policies to determine coverage.
“Our medical team reviews the latest scientific data on medical treatments to create medical policies that determine benefit coverage,” Colleen Miller, spokesperson for Blue Cross and Blue Shield of Illinois, said in a written statement. “Our policy does not consider liver transplantation medically necessary in patients with ongoing alcohol/drug abuse, and we follow the abstinence requirements of transplant centers, which may vary.”
The thinking is that liver function might improve in some patients if they stop drinking, eliminating the need for a transplant altogether. The policies are also meant to reduce the likelihood of a drinking relapse that could ruin a new liver — not just because of the booze itself, but also because people might become less responsible about taking necessary medications while drinking. And there is worry that potential organ donors might not sign up if they think their organs aren’t being put to the best use.
But sober policies also are controversial, as some believe they stigmatize people with alcohol addiction and are based on moral judgments rather than facts. Additionally, many people who have never had a previous warning sign of liver disease may not have that long to prove their abstinence.
“You may be signing a death warrant on some patients that may have turned around and stopped drinking if they had the chance,” said Dr. Michael Abecassis, chief of organ transplantation at Northwestern Memorial Hospital.
Fighting rigid sober policies became Debra Selkirk’s life work after her husband, Mark, died in 2010, when he was 52. He had liver cirrhosis and quit drinking for nearly three years, but started up again and soon found himself diagnosed with alcoholic hepatitis, she said.
Selkirk remembers medical staff saying he wouldn’t be considered for a transplant because it had been just three weeks since his last drink. He died 17 days later.
“The cure is right there, but you can’t have it,” said Selkirk, who lives in Ontario, Canada. “It tells the patient themselves that their life is not worth saving.”
Selkirk launched a constitutional challenge against Ontario’s six-month-sober policy for patients with alcoholic liver disease. In response, last year the agency that runs Ontario's organ transplant system said it will launch a three-year pilot program offering earlier liver transplantation for some of those patients. The program is set to begin in August.
Selkirk credits the victory in part to Dr. John Fung, a renowned transplant surgeon who submitted research supporting her challenge.
Fung, who in 2016 was named director of the University of Chicago Medicine’s Transplantation Institute, is among an influx of new faculty at the Chicago center, Pillai said, prompting a fresh review of several policies, including the sober rule.
Just one person has been transplanted under the new policy since it was established three months ago, Pillai said. The selectivity reflects the sensitivity of trying to balance the rights of people with alcoholic liver disease with the uncertain prediction of whether they will take good care of a new liver.
“In order to be successful we will have to say ‘no’ to a lot of people,” Pillai said. “We are always mindful that we are stewards of an organ that is in minimal supply.”
Most patients with alcoholic liver disease are longtime drinkers with cirrhosis, which is scarring of the liver. Those patients often stabilize if they stop drinking, or are more easily assessed for risk of drinking relapse because transplant teams can see how they have reacted to previous health scares, Pillai said.
But patients with acute alcoholic hepatitis, a liver inflammation, are often sick for the first time, and many arrive at the hospital coughing up blood, profoundly jaundiced and suffering from kidney failure.
Just 15 percent of heavy drinkers ever develop liver disease. But if people with severe alcoholic hepatitis don’t respond to medical therapy, they have a 70 percent risk of dying in six months.
Those are the patients University of Chicago and Northwestern are now evaluating on criteria outside of proven sobriety.
A multidisciplinary team including liver experts, social workers and psychologists examines patients’ psychiatric history, prior adherence to care, willingness to attend alcohol rehab services and insight into the ramifications of their actions, said Barrett Gray, a social worker on U. of C. Medicine’s transplant team. It’s important that they have a supportive family or social network that will help them manage complex post-surgical recovery as well as their addictions, he said.
Also critical is whether a patient has had a scare before, as people who have gone back to drinking once despite a life-threatening warning are more prone to doing so again. The goal is to make sure patients will take good care of their new liver and that a transplant would help them live longer, with an improved quality of life, Gray said.
Across town, Northwestern’s transplant center implemented a similar protocol a year ago. It has maintained its six-month sober policy but created a mechanism for deviating from it for selected cases of alcoholic hepatitis. Just one patient has undergone a transplant under the new rules, out of more than 60 patients admitted for alcoholic hepatitis, said Northwestern liver specialist Dr. Haripriya Maddur.
While very few people meet the stringent criteria, sometimes because they’re too sick to transplant, removing the blanket restriction for alcoholics acknowledges they suffer from a disease rather than a moral failing, Maddur said.
Terri Oesterle says her daughter used alcohol to cope with depression and anxiety, which she traces to a traumatic bullying incident when Chelsea was 16.
Tall and athletic, a “natural beauty” and center for the high school basketball team, Chelsea took a turn after the incident, her mom said. At 19 she was admitted to a rehab facility. She battled bulimia.
Chelsea was working as a waitress and living in Germantown Hills, a Peoria suburb, when she started feeling unwell, complaining of shortness of breath, abdominal pain and nosebleeds. When the family went out to dinner to celebrate Chelsea’s 24th birthday, Terri Oesterle was alarmed: her belly looked distended, her eyes had a yellow tint, her arms were so thin.
Chelsea had gone to a gastrologist but was sent home with vitamins, anti-anxiety medicine and a strong warning to stop drinking. Her family hadn’t realized she’d been drinking so much, and later discovered she was mixing vodka with Gatorade, her mom said.
Terri Oesterle went to check on her a few days later, climbing into bed with Chelsea in the darkened room and scratching her back and arms, as she had always loved.
In the morning light, Chelsea’s ankles looked swollen. She was spitting up blood. They went to a local hospital, where they were told that Chelsea’s liver and kidneys were failing.
The next several weeks were harrowing. Chelsea suffered a cardiac arrest and spent 10 days in a coma. Her mom had her transferred to Northwestern Memorial Hospital on June 1 and within days met with a transplant team.
Social workers evaluated Chelsea, who told them she drank vodka daily, according to her medical records. She wanted to go to rehab and said she never wanted to drink again.
But there was no mention of putting her on a transplant list, and as weeks passed, Chelsea’s pain sometimes became unbearable, her mom said.
Terri Oesterle asked for a meeting with the transplant team and remembers shaking when the surgeon asked why Chelsea should get a transplant over anyone on the transplant floor.
“I was so stunned, all I could think was, ‘She’s young and deserves to live,’” Oesterle said. “It was a horrible feeling to feel like I was fighting to convince them.”
Chelsea Oesterle was released to the Rehabilitation Institute of Chicago, but was readmitted to Northwestern three days later after lab tests showed a big drop in hemoglobin.
Soon she got an infection and went into cardiac arrest. Two days later, told Chelsea’s brain might be bleeding, the family made the “unthinkable” decision to remove life support, her mom said. Chelsea took “several final agonal breaths” before she was pronounced dead the night of July 4, 2013, her records show.
An autopsy found she died of septic shock, alcoholic hepatitis and respiratory failure.
Terri Oesterle took a walk that night to be alone with her grief, and remembers watching an SUV pull up to the hospital and seeing a transplant team exit carrying a cooler.
“I felt sicker than I already had that night,” she said. “I took that as an immediate sign that change had to be made to rid this rule.”
Northwestern Memorial Hospital spokeswoman Kasmer Quinn said the hospital does not comment on specific patients.
Dr. Robert Brown, director of the Center for Liver Disease and Transplantation at New York-Presbyterian Hospital, received a message from Terri Oesterle a short time later describing the experience. He said Chelsea’s is the type of case that presents a tremendous ethical dilemma.
“Even if the risk is high, she is so young, there is so much life to be had, the benefit is so high,” said Brown, who has not reviewed her medical records.
New York Presbyterian in 2011 changed its sober policy to consider alcoholic liver disease patients — not just those with acute alcoholic hepatitis — for transplantation if it is their first time learning they have liver disease, Brown said. Selected candidates must have a documented recidivism plan.
The hospital has transplanted only five such patients since then, he said
“I think this approach is more human-driven and more data-driven and will likely improve outcomes,” he said.
In addition to Northwestern and University of Chicago, there are three other adult liver transplant centers in Illinois.
Rush University Medical Center evaluates each patient with alcoholic liver disease individually, and though it adheres to the six-month-sober guideline whenever possible, advanced illness can shorten that time frame, spokesman Charles Jolie said.
University of Illinois Hospital requires six months of sobriety for alcohol-related transplant patients unless a person isn’t expected to survive that long, and in those cases it considers other factors to determine the likelihood that the transplant will be a long-term success, spokeswoman Sharon Parmet said.
Loyola Medicine at minimum requires six months of abstinence as well as completion of a formal alcohol rehabilitation program, plus considers other factors like social support and psychiatric conditions, said Dr. Jamie Berkes, medical director of liver transplantation.
News of the policy shifts at some hospitals has left Terri Oesterle feeling both grateful and sad, wondering what might have been.
The former stay-at-home mom became an addiction case manager after Chelsea’s death and speaks at Peoria-area high schools, as well as some universities, to wake people up to the issues that killed her.
Chelsea had a tattoo over the top of her left foot that read “Live Loud” in Cherokee, Terri Oesterle said. She’s not sure what Chelsea meant by it, but she has found her own meaning.