A year ago, Parliament passed Bill C-14 allowing medical aid in dying (MAID). Since then, more than 1300 Canadians have been helped to die, yet controversies about the law remain. New guidelines aimed at ending the confusion were released last week.
Bill C-14 permits Canadians to receive a dignified, medically assisted death if they are suffering intolerably from a grievous and irremediable condition and their natural death is 'reasonably foreseeable'. In other words, if death is not reasonably foreseeable, then you're not eligible for medical aid in dying. Doctors who perform MAID and those who might want to do it but are reluctant say this part of the law is problematic because of differences of opinion on how to interpret the phrase reasonably foreseeable. Interpretations may vary from hospital to hospital and from province to province, which means not every Canadian has equal access.
The Canadian Association of MAID Assessors and Providers (CAMAP) believes the resulting confusion means that some patients who are eligible made be denied access to medically assisted death. They hope their new guidelines wil improve access to MAID by providing clarity to health care providers
The first thing the guidelines recommend is to replace the term reasonably foreseeable with reasonably predictable. The authors of the guidelines argue that reasonably foreseeable is never used in medicine – and perplexes many physicians. They also argue that the word foreseeable suggests a timeframe in which the death should occur, whereas the word predictable suggests that the likely cause of death is known but leaves out the time frame.
The other reason for the word substitution is that the phrase reasonably foreseeable means you're also certain about the cause of death. Reasonably predictable means the health care provider is not absolutely certain about the cause or timeframe, yet is willing to state that it is reasonable to predict both.
The guidelines state that medical aid in dying should be permitted when two conditions are met. First, it must be reasonable to predict that death will result from the patient's medical conditions and the long-term consequences of those conditions – given the patient's age and other factors. Second, the death cannot be "remote" or in the "too distant future" in the ordinary sense of the words.
The guidelines' authors provide several clarifying examples. A 60-year old man in the early stages of MS who has minor symptoms and is otherwise healthy would not be eligible for MAID because his life expectancy is 20 years which is quite remote and because he is not in an advanced state of irreversible decline. On the other hand, a 95-year old woman with intolerable pain from arthritis and a life expectancy of 3 years would qualify for MAID because her death is reasonably predictable and because her condition is in an advanced state of irreversible decline – provided of course that she doesn't have dementia.
Those scenarios are straightforward. The guidelines also break new ground. They state that patients with Huntington's disease should be eligible for MAID earlier in the process than many people believe.
Huntington's is a progressive condition causing abnormal movement and dementia, and death within 10 to 20 years due to pneumonia, heart disease or suicide. There is no cure and frequently no effective treatment.
Previously on WCBA, we told you the story of Nagui Morcos, a man with Huntington's disease who ended his own life before Bill C-14 was passed. He did so while hoping for a law permitting MAID - something he didn't live to see.
According to the guidelines, people with Huntington's should be eligible for MAID regardless of life expectancy once they are suffering intolerably either physically or psychologically, all treatments acceptable to the patient have failed, and they are in an advanced state of irreversible decline.
The guideline emphasizes that patients with Huntington's should be able to have MAID as soon as they are suffering intolerably and before dementia takes away their capacity to consent according to Bill C-14 – regardless of how long they have to live.
I think the guidelines bring a bit of peace of mind to physicians and nurse practitioners who are worried about operating a legal grey zone. For people with progressive neurodegenerative diseases like Huntington's, it gives patients and the people who provide MAID the comfort that they're not going outside the law.
But it doesn't address the other restrictions to MAID that people are talking about – things like extending MAID to people with mental health conditions and allowing an enduring consent to MAID that is still valid even after a patient is diagnosed with dementia.
New guidelines won't address those. The only thing that will address those issues is a change in the law.
Dr. Brian Goldman is host of White Coat Black Art, which returns with new episodes this fall.