Ethical principles stand behind healthcare providers who withhold medical treatments that are “futile or pointless.” But withholding treatment can be controversial. For example, the family of a gravely ill patient might not agree with professionals that an unproven treatment is futile.
Even when scientific evidence in favor of a treatment accumulates, medical practitioners can be slow to embrace it. In Ontario, Canada, Debra Selkirk combined scientific reports with her powerful personal story, seeking to overturn the rule that individuals with advanced alcoholic liver disease must demonstrate six months of abstinence from alcohol to be eligible for a liver transplant.
Debra shares her account of that process below.
Mark Selkirk died on November 24, 2010 from liver failure caused by alcohol use disorder. He was never assessed for a liver transplant because he had not been alcohol-free for 6 months, a restriction placed on alcoholic liver disease patients (ALD) around the world.
The 6-month wait remains the most controversial policy in liver transplantation. Liver transplant pioneer surgeon Dr. Thomas Starzl began writing about its injustice as early as 1988, saying “…the imposition of an arbitrary period of abstinence before going forward with transplantation would seem medically unsound or even inhumane.”
Subsequent research concluded that the post-transplant rate of return to heavy drinking is extremely low. Organ loss due to drinking is even more rare. In 2008, a comprehensive analysis of international data by a University of Pittsburgh team established the return to heavy drinking at 2.5 percent in any given year. The study concluded, “The average rates of all outcomes we examined suggest that during any given year of observation, most transplant recipients with substance use histories will neither use substances nor become nonadherent to components of the medical regimen.”
Additional studies support similar conclusions, yet most transplant centers continue to deny transplants to ALD patients until they reach the 6-month benchmark. The policy remains intact, based largely on stigma against patients with alcohol use disorder, fueled by a fear that the public will be less likely to donate their organs if they think livers are being wasted by transplanting them into individuals with alcohol use disorder.
Some large transplant centers in the United States, including Johns Hopkins, New York Presbyterian, and University of Maryland—more in keeping with the evidence that the standard policy is out of date—have transitioned to a more compassionate approach, often incorporating addiction treatment into their transplant programs.
On October 28, 2015, I filed a constitutional challenge against the 6-month wait in the Ontario Superior Court of Justice in Toronto, Canada. My goal was to end the 6-month waiting period that killed my husband in the hope that other families would not suffer a similar devastating loss. Alone, I studied legal cases and medical research, finally filing the court documents without the assistance of a lawyer.
In May 2016, University Health Network and Ontario’s Trillium Gift of Life Network asked me to put the court process on hold, and they went right to work on the review process they believed the court would have ordered in my case.
In August 2018, Ontario will become the first jurisdiction in North America to universally assess all patients with liver failure caused by alcohol use disorder for liver transplant without any period of sobriety. Each patient will be assigned to a specialized services team comprised of hepatologists, psychiatrists, addictions specialists, nurse coordinators, and social workers.
The initial length of the program is estimated to be three years. However, my expectation is that as the program produces results matching past low rates of return to drinking, the 6-month wait will be permanently suspended.
A Canadian news story on Debra and Mark Selkirk has photos of them both.
Ms. Selkirk's frustration and loss inspired her successful campaign in Ontario to suspend the "6-month rule." In the United States, where decision-making by transplant teams is not standardized, there has been longstanding recognition that the 6-month rule for liver transplants in alcoholic liver disease is based on inconclusive evidence and that more conprehensive criteria are needed. Nevertheless, a 2011 study of 63 meetings of liver transplant selection committees, at four transplant centers in different parts of the country, observed that members routinely started out considering "rule-based reasoning" such as "the 6-month rule for substance abuse." Final decisions, however, were more often determined by "judgment-based reasoning."
In the article, "Towards Standardizing the Alcoholism Evaluation of Potential Liver Transplant Recipients" (Alcohol and Alcoholism, Special Issue on Alcohol and Liver Transplant, in press), Beresford and Lucey point out that transplanted livers can fail not only due to drinking, but also due to missed doses of medicines that prevent rejection of the transplant. They discount the relevance of the duration of recent substance abstinence while advocating careful assessment of other characteristics of potential recipients, including cognitive state, experiences with alcohol and other substances, collateral history, social supports, and ambivalence toward recovery.
Watch for additional NCADD Addiction Medicine Updates that highlight how subtle prejudice and stigma compromise the quality of medical care provided to individuals with addiction.
The NCADD Addiction Medicine Update provides NCADD Affiliates and the public with authoritative information and commentary on specific medical and scientific topics pertaining to addiction and recovery.