Woman, 36, dies after she was denied liver transplant over alcohol use

Article content

An Ontario woman has died of liver disease after doctors denied her a life-saving liver transplant because she failed to abstain from the alcohol that made her sick in the first place.

The case cuts to the heart of a perennial issue in Canadian legal bioethics — whether and how personal behaviour should affect a person’s eligibility for specialized medical care.

Article content

In this case, the woman’s partner even volunteered to donate some of his own liver, so as not to use a scarce cadaver organ, but that operation was also denied on similar grounds.

Advocates say stigma against alcoholism has led the organ transplant system to unfair and discriminatory practices that end up costing lives. But they have had only limited success in courts, which have found clinical decisions about complex surgery are not bound by the Charter of Rights and Freedoms, and cannot be challenged under it.

Amanda Huska, 36, died last month, after months in an Oakville, Ont., hospital. Health reporter Avis Favaro, who covered the case for CTV News, described documents showing the decision turned on Huska’s “minimal abstinence outside of hospital.”

Being ineligible for the cadaver organ also made Huska ineligible for transplanting her partner’s organ, which has led her partner Nathan Allan and other advocates to contemplate a court challenge on behalf of future patients.

It does feel like a slap in the face to be told you’re ineligible

“It does feel like a slap in the face to be told you’re ineligible,” said Maxwell Smith, a professor at Western University’s School of Health Studies with a chair in public health ethics.

Article content

This ethical question about personal behaviour and its relation to eligibility for medical care sometimes arises with health problems associated with tobacco or drugs. But it is in the case of alcoholic liver damage that the link to lifesaving transplant surgery becomes the most stark. And sometimes, when patients die, it can flare up into what looks like a moral outrage, as if trying to save someone’s life would be a waste.

“We often rely on physicians and the science to try to adjudicate these cases, and evidence can give us more clarity about how to optimize outcomes, but it won’t tell us what’s fair,” Smith said.

Making rules to govern this process requires stepping back from the details to take the eagle’s eye view, Smith said. It is a familiar issue in the courts, which have lately sided with hospitals, which have in turn updated their eligibility protocols.

When Debra Selkirk’s husband Mark was in this same position, in need of a liver transplant before his death from alcohol related damage in 2010, the rule in Ontario was hard and fast. He could not be put on the waitlist for a cadaver liver until he had abstained from alcohol for six months. Many people were excluded by this rule.

Article content

Article content

Debra Selkirk’s advocacy on his behalf continued through the Ontario courts as that criterion was dropped in 2020 in favour of a more nuanced professional judgment, still based on a checklist that takes abstinence into account, but with a more holistic view of the patient and his prognosis.

Her court challenge ended last year when the Supreme Court of Canada declined to hear it. The six month rule was moot. The new clinical criteria are immune to Charter challenge, and cannot be overturned on the grounds that they are arbitrary or grossly disproportionate to their purpose.

Smith, the academic bioethicist, said the basic weakness of a hard and fast eligibility rule is partly solved by taking a more nuanced approach that relies on multiple criteria and professional judgment.

Being told you are lower on a priority list, which is “not snuffing out hope altogether,” is psychologically and emotionally different than firm denial, Smith said, even if the practical consequence ends up being the same.

It’s easier to accept that other people might be higher in priority for access to scarce resources, Smith suggested, than to accept that your own behaviour has made you ineligible according to a coldly rigid rule.

Article content

Another problem is the notion that alcoholism is a disease and a disability, which can put this medical effort to discriminate among potential liver transplant patients in a new and different light.

This effort to avoid unfair discrimination is partly why protocols have shifted from taking a hard line on abstinence to evaluating each candidate individually.

Selkirk said in an interview that alcoholic liver disease seems like the only place in health care where a patient’s culpability actually determines the kind of care he receives. Not reckless driving, not other risky behaviours, just alcohol addiction. As she put it, it makes health care conditional.

She thinks stigma “absolutely governs” the clinical decision-making for these patients. She recalls in her husband’s case a doctor yelling at him in front of other people that he knew he had to stop drinking, and that she would help him, “but if you ever drink again I will not treat you.”

The living donor issue is different than a cadaver organ. Typically, this is a loved one who is willing to donate only to one specific patient, so there is no issue of scarce public resources.

Article content

Selkirk said Huska’s partner Nathan Allan was prepared to save her life, but was denied that chance. She dismissed the risk of a failed operation as low, and said that even on a coldly financial analysis, it costs more to keep a liver failure patient alive for the last months of her life than to transplant, which could save her life.

In denying her that organ, in denying her that transplant, she died, and we wasted $350,000

“In denying her that organ, in denying her that transplant, she died, and we wasted $350,000,” Selkirk said.

That denial is partly because the criteria for eligibility for living donor transplant still mirror those for cadaver organs.

“My understanding is the protocol of applying exact same criteria to living donors is due to the fact those transplants can fail,” Smith said. Suddenly, in that case, a patient with a diseased liver has effectively no liver.

“You want there to be some alignment between the lists,” Smith said. So, in the case of the living donor, “you would need to accept that if this living donation fails, you will die immediately.”

That might be a risk some patients and even some hospitals would take, but the courts have found this is not a government function and therefore cannot be compelled by the Charter as a remedy for discriminating against people with the disability of alcoholism.

Article content

A key problem, Smith said, is that clinical decisions that end in a patient’s death, as in the case of Amanda Huska, are never seen by the wider world as simply medical decisions. They are human choices, with social and political contexts.

Hard and fast rules may be blunt instruments, but professional judgment is sensitive to clinical bias, clinician perspective, family advocacy, and all sorts of other factors, Smith said.

He pointed to similar problems with COVID vaccination and organ transplant. Sheila Annette Lewis of Alberta, for example, died last year aged 58 after she was denied an organ transplant because she refused to be vaccinated against COVID, which doctors regarded as crucial due to the suppression of the immune system that is a key step in organ transplantation to prevent rejection of the new organ. Her court challenge failed.

“There’s a lot of attitudes, dispositions, histories, that go into that, and if someone’s against being vaxxed against COVID, and that makes them ineligible, some might say it’s a choice, but also there is the background of that person,” Smith said.

Article content

Since long before COVID, some communities in Canada have had legitimate reasons to be suspicious of public health requirements and doctors in general. So hard and fast rules “will tend to disadvantage certain populations, and it will be the same populations that get disadvantaged,” Smith said.

“These aren’t just clinical decisions,” said Smith. These matters are crucial for public trust in health care, he said, and they need to be at least transparent. The way people understand these protocols can affect their willingness to donate organs, which in turn affects the future supply for future sick people.

Last year, the Supreme Court of Canada finally declined to hear the appeal of Selkirk. So things are where that Ontario Court of Appeal left it. The Charter does not bind the clinical decisions of organ transplant teams. Courts cannot order hospitals to perform operations to correct perceived unfairness or stigmatization, or to prevent discrimination against people with disabilities like alcoholism.

The living donor criteria remain unsettled, though. The legal door is open to a challenge. All it needs is the right pairing of patient and donor. It could have been Huska and Allan, and might yet. In Selkirk’s case, Justice James MacPherson, writing on behalf of the Ontario Court of Appeal, ruled that “it would only be appropriate to consider it in a case where there is a living donor and a living recipient and a legal challenge arises in a context that, at the moment, I cannot envision.”

Selkirk said she is preparing a new legal challenge, involving Huska’s case and also another deceased patient, and expects it to proceed in the near future.

“I’m going back at it,” she said.

Our website is the place for the latest breaking news, exclusive scoops, longreads and provocative commentary. Please bookmark nationalpost.com and sign up for our daily newsletter, Posted, here.

Article content