It began as a gentle way to unwind, a reward after a long day at work.
Jackie Brafford, a registered nurse, would arrive home, kick off her shoes and pour herself a glass of chardonnay as she prepared dinner for herself and Steven, her husband of 40 years. After the pair ate at their home in Mineral, Virginia, Jackie would settle on the couch with a book, glancing at the evening news while idly scratching Crystal, the family's chow, between the eyes.
Often that first glass of wine would turn into a second, and then another.
At some point, on Jackie’s days off, “she might not make it to lunchtime before she started drinking,” Steven says.
By early last year, Jackie, 62, was about five years into habitual alcohol use. Family members had confronted her with their worries around Christmastime, and Jackie quit drinking, cold turkey. But by then, Steven says, she was lethargic and unmotivated, her appetite low.
“I’d been after her to get those things checked out,” he says, “but nurses are the worst patients, and she didn’t think anything was wrong enough to warrant a visit to the doctor.”
On vacation in Florida with Steven and friends in March, Jackie began to feel acutely ill, tired and weak. The couple headed north, stopping at their daughter’s home in Virginia Beach for a grandson’s birthday party. But right before the festivities began, Jackie told her husband to take her home. Once in the car, that request changed, Steven says, to “just take me to the hospital.”
Within days, doctors suspected alcoholic liver disease (ALD), a spectrum of damage caused by excess alcohol intake. To survive it, Jackie was told, she would need a new liver.
Many Americans die every year of complications of ALD – more than 21,000 in 2015, according to the Centers for Disease Control and Prevention. Some might have been saved by a liver transplant. However, many ALD patients are unable to get on a list for a donor organ because an informal policy at nearly all of the nation's 140 or so transplant centers requires that ALD patients demonstrate six months of sobriety before they are allowed to register.
The rationale is twofold, says Todd Stravitz, medical director of liver transplantation at Virginia Commonwealth University Medical Center in Richmond, which observes the six-month rule. “First, we want to see if the patient's liver restores function in the absence of alcohol. And, we want to ensure that the recipient will cherish the gift of a liver by not abusing it.”
And a gift it is. The decision is complicated because there aren't enough livers to go around. In 2015, 7,127 people received new livers nationwide, according to Anne Paschke of the nonprofit United Network for Organ Sharing. But the demand for livers far exceeds the supply: More than twice as many sick patients have been cleared for the national liver transplant waiting list – an ever-changing registry of candidates that contained 14,799 names in mid-January – that is maintained by UNOS.
Jackie Brafford needed a spot on that list – and fast. “We went through the evaluation, very worried that she was too sick to last for the six-month wait,” Steven says. “Finally, they told us she was denied due to alcoholism. They said they didn’t want to waste a liver. I can’t even tell you how sad my wife was, knowing she was going to die.”
Five weeks later, she did. She’d been sober for four months.
At transplant programs around the country, selection committees labour to ensure that each patient placed on the national registry is a practical choice. The committees – panels of 20 to 30 professionals such as surgeons, hepatologists, pharmacists, nutritionists, psychologists and social workers – weigh physical symptoms, psychosocial and family health characteristics, and substance-abuse history.
Alcoholic liver disease can be a controversial indicator for transplant, with an often unarticulated observation of conventional moral codes.
“We try really hard to not make decisions based on personal feelings,” says Sander Florman, director of the Recanati/Miller Transplantation Institute at Mount Sinai Hospital in New York. “Having said that, we are doctors – humans – and we take care of our individual patients – humans – case by case, and we try to balance organ shortage with always opting to save lives.”
He adds: “The six-month practice has been generally accepted but is not based on hard data, and I believe should be seen as more of a guideline than a policy – because life and death is at stake. As a result, it is hard to draw a firm line in the sand. If someone has been sober, is in a program, committed to remain in a program and has social supports, it is very hard to justify six months as an absolute and any different from 5 1/2 months – or other amount of time – if they will die without transplant.”
Although ALD is the second-most-common form of chronic liver disease – hepatitis C is the most common liver disease leading to transplant – researchers from the American Association for the Study of Liver Diseases report that most patients with end-stage ALD are never formally evaluated for transplantation. The group attributes that to “perceptions that ALD is self-induced (and to) the possibility of recidivism or noncompliance” as well as to the shortage of organs. About 21 per cent of the people on the waiting list have alcoholic cirrhosis, a severe manifestation of ALD, according to Paschke.
But practice guidelines from the liver-diseases association assert that “only a small fraction” of ALD transplant patients revert to heavy alcohol use or abuse and that “overall survival rates are generally similar between alcohol-related and non-alcohol-related liver transplant recipients.”
Patients with active substance-abuse issues aren't flat-out denied transplants when they apply, Stravitz says. Instead, “they're deferred while the social workers and psychologists consult with them to try to get them to where they're acceptable candidates. Unfortunately, that marker isn't written in stone, particularly when trying to predict who will return to abusive alcohol consumption.”
Getting a slot on the list “doesn’t mean you'll survive” given how many on the list never get transplants, Steven Brafford says. “But my wife might have.”
Brafford says that his wife had stopped drinking for about three months – without benefit of addiction treatment – before her ALD diagnosis. “But there was still that six-month rule,” he says. “In my opinion, the committee members hid behind it so they could go home and sleep at night. I’m still angry, alone and asking myself what I could have done differently so my wife would be alive today.”
Will Reves, a 40-year-old IT specialist in Richmond, hadn’t been a problem drinker, says Sarah Reves of her husband. He had been “just the typical ‘have a few drinks on the weekend’ type of guy,” she says, but he lapsed into heavy alcohol use following the death of a family member. Last January, after about four or five weeks of downing a fifth of bourbon daily, “his eyes turned yellow, and we knew something was really wrong,” Reves says.
Will Reves was swiftly diagnosed with ALD. “They told us that he needed to hang out for six months, that maybe he’d perk up,” says Sarah Reves, a nurse practitioner. He had consumed no alcohol – “nothing – not mouthwash or cough medicine, not a sip of beer” – after that.
Still, his markers of liver disease worsened, and in March he required admission to an intensive care unit.
Doctors told the family that he had alcoholic hepatitis and that it probably was irreversible and fatal. Reves assured his care team that he would never touch alcohol again, his wife says, and she didn’t doubt him. “My husband was stubborn and loyal and a person who did not make promises he couldn’t keep.”
The transplant committee at the hospital agreed that he could move forward with the physical workup required for liver allocation. He underwent a colonoscopy, a stress test and cardiac catheterisation, his wife says, and he was in a great mood every time he cleared a hurdle.
But within days, committee members informed the family that they would not list Will.
“They wanted him to have some inpatient counselling (at a substance abuse center) for alcohol,” she says, “but Will couldn't be released to do that because he was too sick. His response was: ‘They don’t believe me, and they don’t think I’m worth saving.’” In early April, just eight days after the committee’s decision and 11 weeks after the first symptom, Sarah says, her husband developed sepsis, a common complication of liver failure, and died.
In patients with severe alcoholic hepatitis, “the six-month rule can be a death sentence because there simply isn’t time for patients to undergo counselling and demonstrate their resolve to remain sober,” Stravitz says. “But how else can the transplant community test a patient’s potential to stay alcohol-free and safeguard their new liver?”
Even family members sometimes will say that ALD is a self-inflicted problem, he continues. “But some understand the rationale behind the rule – especially those who’ve watched their loved ones abuse themselves for years, and they understand that we’re not being punitive. But the decisions can seem subjective.”
Marilyn Bullock received her liver transplant in July 2015, six months after being diagnosed with cirrhosis of the liver. The 63-year-old bank employee, who characterises herself as a former social drinker, says she believes that “if I’d had to wait even one week more I wouldn’t be here now.” When her transplant finally came through, she was weak, exhausted and ready to give up.
While she understands that organs are in short supply, she is not convinced that a six-month wait is fair. “It shouldn’t be a hard-and-fast rule,” she says. “I think it should be situational.”
Calling herself “more than lucky” to have qualified for a transplant, Bullock says: “I appreciate everything 100 per cent more. I view things differently now. I take care of myself. And I’m not going to mess things up by drinking again.”
For her part, Sarah Reves says she understands the decision to be skeptical of transplants for ALD patients. “But I'm angry for the mental anguish my husband had to go through” as he tried to clear hurdle after hurdle to get onto the list. “There has to be a better way than the doctors saying, ‘Prove to me that I should let you live’ and the patient saying, ‘I made a mistake – do I have to keep paying for it?’”
© Washington Post
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