Woman with degenerative, chronic illness eligible for MAID, says government expert
VANCOUVER, B.C. – Today, Julia Lamb and the British Columbia Civil Liberties Association announce that they have adjourned their medical assistance in dying case.
Ms. Lamb and the British Columbia Civil Liberties Association (BCCLA), Canada’s leading civil rights watchdog, filed the lawsuit against the government of Canada in 2016. The lawsuit challenges the government’s restrictive law on assisted dying. Specifically, that medical assistance in dying is only available to Canadians whose natural death has become “reasonably foreseeable.”
Ms. Lamb and the BCCLA requested the adjournment after the government of Canada’s expert witness admitted that Ms. Lamb would now qualify for an assisted death if she requests medical assistance in dying (MAID). According to the uncontradicted government expert, medical practitioners who help patients end their lives have reached a clear understanding that the law does not require a person to be near death. According to their expert, there is a medical consensus that a patient’s natural death will become reasonably foreseeable if they refuse care that will lead to death (for example, care that prevents infection). The law does not force Ms. Lamb to suffer from a protracted, painful dying process.
Ms. Lamb suffers from spinal muscular atrophy, a genetic, neurodegenerative disease. The wheelchair-bound 28-year-old relies on assistance for all of her daily living activities. She fears her disease will condemn her to years of unbearable suffering, unable to use her hands, eat without a feeding tube or breathe without a ventilator.
In Ms. Lamb’s case, the federal government filed the expert report from Dr. Madeline Li, a physician, MAID provider and the lead for the MAID program at the University Health Network in Toronto, a top medical research and healthcare institution. Dr. Li’s opinion, which is based on her knowledge of current MAID practice among many providers, is that initially after the law was enacted, many people faced barriers to access. Medical practitioners were on a steep learning curve. They only felt permitted to provide MAID when they were confident a patient had a very short life expectancy. On this interpretation of the law, Julia Lamb would not qualify. However, Dr. Li stated that if Ms. Lamb requested MAID now, she would be eligible because she is at risk for developing a chest infection. If Ms. Lamb states that she will stop using her BiPaP machine (a ventilator that helps her breathe at night) and then refuses treatment for the inevitable chest infection, she would meet the requirement under Canada’s law that “her natural death has become reasonably foreseeable.”
No other expert in the case challenged Dr. Li’s evidence on this matter. Dr. Li admitted that the government’s MAID law allows medical practitioners flexibility to interpret the law to provide MAID to people like Ms. Lamb whose illnesses are not terminal, who are not near the end of life, who are not “dying,” and whose path to death only becomes predictable and short because of a refusal of preventive care.
The government enacted the restrictive MAID law in response to the landmark 2015 ruling by the Supreme Court of Canada in Carter v. Canada. The top court struck down the prohibition on assisted dying as a violation of an individual’s right to life, liberty and security of the person. The court unanimously ruled that consenting, competent adults who are suffering intolerably from a “grievous and irremediable” medical condition have the right to seek a compassionate death with the assistance of a doctor.
However, the law is much more restrictive than what the top court envisioned and was immediately criticized by human rights groups and medical practitioners. The Supreme Court did not require that the condition be terminal or that a person be near death or dying.
Last week, the Quebec Superior Court released its decision in Truchon and Gladu v. Canada, on September 11, 2019, declaring the restrictive law unconstitutional. The Court held that Canada and Quebec’s assisted dying laws, which restrict medical assistance in dying to individuals whose deaths are “reasonably foreseeable” are unconstitutional. The Court explained that Canada’s law violates s. 7 and 15 of Charter, and Quebec’s law violates s. 15 of the Charter, because they do not permit assistance in dying for Canadians who are suffering with no immediate or specifically predictable end in sight. Justice Baudouin suspended the declaration of invalidity for six months. The Attorney General of Canada has until October 11, 2019 to decide whether to appeal the court’s decision. If the government does not appeal the decision, reasonable foreseeability will no longer be a barrier to eligibility in Quebec after March 11, 2020.
Julia Lamb, plaintiff in the case, states: “I am so relieved to know that the government’s evidence in my case is that I am eligible for an assisted death when and if I request one. For years, I have lived in fear that there may come a time when I become trapped in pain and suffering – like not being able to breathe properly, not being able to write, unable to use my hands. My disease could force me to suffer for years – without killing me. The government’s evidence in my case is that I could ask MAID today, tomorrow or in ten years, and I will have the right to end my pain and suffering with the assistance of a doctor or nurse practitioner. I feel like a shadow has been lifted now that I don’t have to live in fear of the future. I sincerely hope that the evidence that the government filed will provide comfort to doctors who are asked to provide MAID to people who are trapped in intolerable suffering with no end in sight.”
Grace Pastine, BCCLA Litigation Director, states: “The government’s uncontested evidence in the case is that Julia qualifies for MAID if she requests it. This is a huge victory for our client and for the many Canadians like her who might find themselves suffering unbearably with no end in sight. We are relieved that Julia will have the option of a painless and compassionate dying process when she believes that her suffering has become intolerable. She will be empowered to chart her own end-of-life journey.
The government’s expert evidence provides new clarity to health care providers. It confirms that Canadians who are seriously ill and face enduring and intolerable suffering have the right to die with dignity, even if they are not at or near the end of life and their deaths are not considered “forseeable.” The government’s evidence will improve care and provide comfort to many suffering Canadians. If you have a grievous and irremediable illness that causes you enduring and intolerable suffering, you have the right to choose MAID without having to hasten your own death.
The federal MAID law provides layers of safeguards to ensure that an adult is competent, protected against any coercion and capable of consent. You have to have a serious and incurable illness, be in a state of irreversible decline in capability, and be experiencing enduring and intolerable suffering. Canada’s experience shows that the laws have been safely and responsibly carried out by medical practitioners.
Our client is reassured and thankful that she is eligible for MAID if she requests it, so there is no reason to go to trial right now. But make no mistake – we will continue to sue the government if we learn that other Canadians like Julia are being denied their fundamental constitutional right to a compassionate and peaceful dying process.”
Dr. Stefanie Green, President of Canadian Association of MAID Assessors and Providers, states: “This is good news for all Canadians – the government’s evidence suggests that anyone requiring personal care, such as regular turning in bed, being fed, requiring regular dressing changes or in-dwelling catheters, would meet the eligibility requirement for a reasonably foreseeable death if they decide to refuse that care. And mercifully, they are not required to actually do so in order to qualify.
There is trust in our health care practitioners, in our application of the rigorous process as outlined in our legislation, and in our experienced, clinical interpretations. This may now allow clinicians who have been understandably more cautious, to stand alongside the majority of experienced providers who agree with this determination.
Kelsey Goforth, Dying with Dignity Canada’s Support Program Manager, states: “Making a request for MAID can be difficult and confusing at the best of times. Dying With Dignity Canada is here to help suffering people and their loved ones understand their legal end-of-life rights and options and how to navigate them.”
People facing barriers to MAID may wish to contact the national human-rights charity Dying With Dignity Canada (DWDC). In addition to advocating for MAID rules that respect the constitution, DWDC provides information and personal support to adults suffering greatly from a grievous and irremediable condition who wish die on their own terms.
Julia Lamb and the BCCLA are represented by Joseph J. Arvay, OC, OBC, QC of Arvay Finlay LLP.
Grace Pastine, BCCLA Litigation Director: [email protected] or 778-241-7183