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Doctors seek clarity on who gets medical help in dying

A group of doctors wants to clarify who qualifies for medical assistance in dying to help practitioners who work in isolated areas. Dr.
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A group of doctors wants to clarify who qualifies for medical assistance in dying to help practitioners who work in isolated areas.

Dr. Jonathan Reggler, the Comox Valley-based family doctor who led a committee that created a new guideline for practitioners this month, said the language used in assisted-dying legislation puts doctors in a difficult position.

The law, which came into effect almost a year ago on June 17, 2016, limits the right to assisted death to individuals whose natural death is “reasonably foreseeable.”

While some areas, such as Victoria, have multiple doctors offering medical assistance in dying, the Canadian Association of MAiD Assessors and Providers has some members who are the only doctor in their region providing the procedure, Reggler said.

The association has a confidential communication system for doctors, where they can discuss anonymized cases and seek support from colleagues, he said.

“Judging by the number of cases discussed and the fact that ‘reasonably foreseeable’ is the single-most concerning part of almost all of the cases, I would say it has been very difficult for doctors,” Reggler said.

Reasonably foreseeable is not a clinical term, leaving its interpretation up to medical staff, he said. “There’s enormous confusion about exactly what it does and doesn’t mean that’s leading to unevenness in the approach to [assisted dying] across the country. And we do believe it’s probably leading to patients who are eligible being found ineligible,” Reggler said.

The association released its clinical-practice guideline this month. It says “reasonably foreseeable” can be considered to mean “reasonably predictable.”

“Some people would say those two terms are completely synonymous. I think there is a difference. Doctors are quite used to the idea of predictability in medicine,” he said.

The guideline draws from the law itself to remind practitioners that natural death could be predicted based on a combination of factors, rather than a single condition, including age and frailty. It also points out that a rigid time frame related to prognosis should not be used — in some U.S. states, for example, a six-month prognosis is used as the cut-off for eligibility.

According to the guideline, the death of a 30-year-old man who is diagnosed with Huntington’s disease could be considered reasonably predictable. The relentlessly progressive disease leads to severe movement disorder, dementia and death. The prognosis at diagnosis is 10 to 20 years. If the man is suffering intolerably and in an advanced state of decline, with all treatments failing, the patient should be considered eligible, it says.

“The prognosis becomes unimportant if all the other factors of eligibility are there,” Reggler said.

On the other hand, a 60-year-old man diagnosed with multiple sclerosis who has relatively minor symptoms and no other chronic illness should be denied if he is seeking assistance based solely on the diagnosis, it says.

The guideline draws from the law, legislative background material and legal definitions.

Dr. Jeff Blackmer, the Canadian Medical Association’s vice-president for medical professionalism, said some people would disagree with the interpretation used in the association’s examples. And while thinking about death as “predictable” might be helpful, it doesn’t solve the problem of creating a crystal-clear definition.

“I think there will always be individual cases that will be challenging. There’s no language that will resolve every single case,” he said.

Blackmer said the guideline is a positive step, although the true test will be whether working physicians find it helpful.

He also said general-practice guidelines are typically developed with more vetting, with an expert panel collecting input from various organizations, then providing a clear clinical pathway or steps to follow. The association’s guideline focuses on the clinical application without full input from other bodies, such as medical regulators and policy experts, he said.

“The clinical exposure is important, but there are other aspects to consider, as well. That’s why I think this is part of a bigger picture.”

Ten days after assisted-dying legislation passed last year, the B.C. Civil Liberties Association launched a court challenge of the “reasonably foreseeable” death requirement, alongside 25-year-old Julia Lamb, who suffers from spinal muscular atrophy, a severe neurodegenerative disease.

The BCCLA argues that Lamb’s illness is “grievous and irremediable” — wording that was used in the Supreme Court of Canada’s decision in Carter v. Canada, the basis of the new legislation. When the legislation was crafted, that wording was excluded, making Lamb ineligible for assisted death.

The Lamb court challenge is expected to go to trial in 2018.