Children of assisted-death advocate Kay Carter urge amendments to Liberal bill

Lee Carter, daughter of Kay Carter, speaks about doctor-assisted death legislation, in Ottawa, on Thursday, April 21, 2016.

OTTAWA -- Parliamentarians are being urged to amend a proposed new law on medically assisted dying by the children of the woman whose suffering was central to the Supreme Court's decision to strike down the ban on assisted death.

Lee and Price Carter say their late mother would not have qualified for medical help to end her life under the restrictive provisions of the bill introduced last week by the Trudeau government in response to the top court's ruling.

Instead, they say their mother and people like her would be forced to endure unbearable suffering, potentially for years.

"I'm shocked that this government's proposal would exclude the very case this issue was tried on," Lee Carter told a news conference Thursday on Parliament Hill.

"We fought for a half a decade and won our case at the highest court in the land and this bill would erase the victory that we achieved for people like my mom. We ask ourselves, what was the point?"

Kay Carter suffered from spinal stenosis, a painful condition that left her bedridden, unable to move or even feed herself. She found the loss of autonomy and dignity intolerable but was not, according to her children, facing imminent death.

The 89-year-old travelled secretly to Switzerland in 2010, where she legally obtained medical help to die. Her children, with the help of the British Columbia Civil Liberties Association and several other plaintiffs, carried on the court battle to legalize the practice in Canada.

The proposed federal law would allow assisted death only for consenting adults, at least 18 years of age, who are in "an advanced stage of irreversible decline" from a serious and incurable disease, illness or disability and for whom a natural death is "reasonably foreseeable."

The bill is more restrictive than the conditions prescribed by the Supreme Court, which ruled in the Carter case that medical help in dying should be available to clearly consenting adults with "grievous and irremediable" medical conditions who are enduring physical or mental suffering that they find intolerable.

"Canadians should be angry that this legislation restricts the definition for who dies and who suffers," said Price Carter.

"It is unacceptable for this new law to say that some people must simply endure suffering because their illness isn't terminal. It is not for the government to tell them that they must be forced to go on living."

BCCLA executive director Josh Paterson said the government has invented additional restrictions, "seemingly out of thin air," that the top court never contemplated and which make the proposed law unconstitutional. At a minimum, he said the government must delete the requirements that a person's medical condition must be advanced, irreversible and incurable and that natural death must be reasonably foreseeable.

If it does not, Paterson said grievously ill people will be left with "the very cruel choice" that the Supreme Court explicitly said they have the right to avoid: "to take their lives prematurely while they're still physically able; or having to ask the help of their family members, who might potentially have to commit a crime to assist someone to die; or else they will just have to suffer intolerably, trapped potentially for agonizing years and years into the future."

Justice Minister Jody Wilson-Raybould and her department's officials have insisted the bill is consistent with the top court's ruling. They've also maintained Kay Carter and the other plaintiffs in the case were close to death and therefore would have been eligible for an assisted death under the proposed law.

"With great respect, government lawyers have been wrong on assisted dying for the last six years and they're wrong today when they say that," Paterson countered.

"When the minister says Kay Carter's death was coming, she's not relying on the death ... that would come from her spinal stenosis. She's just saying, 'She's old and she's going to die at some point."'

The BCCLA is also critical of the bill's omissions. It does not extend the right to assisted dying to mature minors or those suffering only from mental illnesses. Nor does it allow for people with competence-eroding conditions like dementia to make advance requests for an assisted death.

The government is promising further study on those issues but Paterson said the bill should be amended to at least put a strict time limit on that study.