MAiD hearings expose divide in end-of-life care

Seven years after Parliament legalized voluntary euthanasia in Canada, doctors and professors of medicine are still at odds over the definition of palliative care, funding for end-of-life care and the threat Medical Aid in Dying poses to the poor, vulnerable and isolated.

Before a joint committee of the House of Commons and Senate looking at possible expansion of MAiD April 28, experts sparred over whether or not palliative care includes MAiD, whether funding for MAiD is sucking money away from palliative care and whether patients really are making free, rational and autonomous choices when they opt for an early exit at the hands of their doctor.

“If someone is standing on an open balcony in a high-rise apartment, rapidly being engulfed in hot flames, is it reasonable to say that they have a choice whether or not to jump?” Dr. Harvey Chochinov, professor of palliative psychiatry at the University of Manitoba and senior scientist at the CancerCare Manitoba Research Institute, asked senators and MPs at committee hearings April 28. “Exercising autonomy means having real and viable options. If you are dying in the absence of quality and available palliative care, if you are disabled but don’t have access to supports and services, or social housing and employment opportunities; if you have chronic pain or uncontrolled symptoms and don’t have timely access to a specialist; if you are struggling with a mental illness and can’t find a therapist prepared to help you grapple your way toward recovery, can we really say you’re exercising an autonomous choice?”

On the other side of the spectrum of experts, Dr. James Downar, specialist in critical care, palliative care and medical ethics at the University of Ottawa, ruled out the possibility that MAiD is either forcing or tempting people to jump.

“There is absolutely no data suggesting the practice of MAiD at this point is driven to any degree by poor access to palliative care, socio-economic deprivation or any isolation,” Downar declared.

Not so fast, said Toronto General Hospital palliative medicine consultant and University of Toronto Faculty of Medicine professor Dr. Ebru Kaya.

“The data that Dr. Downar refers to and the data that the Health Canada reports refer to is the wrong kind of data,” she said.

Kaya held up a single-sheet form with “yes” and “no” boxes under questions about whether the patient seeking MAiD was informed about palliative care as an option and whether the patient could access palliative care.

“This sort of health-admin data does not do it,” she said.

Retired Laval University professor and palliative care veteran Dr. Pierre Viens insisted that MAiD was just one possibility in the continuum of palliative care.

“It is one volley, one aspect of palliative care, which is destined to answer to the patient’s request — situations where the standard, conventional palliative care provides no succour, no comfort,” he said.

Kaya suggested that Canada is making end-of-life policy with insufficient information.

“When it comes to being able to figure out what we have, who’s doing what in terms of palliative care, we don’t have that information,” she said. “We have no national standards to benchmark palliative care. These do not exist and we need to create these.”

“I’ve never seen so much confusion,” said Montreal palliative and family medicine expert Dr. Marjorie Tremblay.

Tremblay, who does not oppose legal access to MAiD but does not include it in her scope of practice, insisted that MAiD and palliative care must not be confused.

“The thing I hear most often in my practice is, ‘If only I had known what palliative care truly is,’ ” said Tremblay.

Confusing MAiD and palliative care, or throwing the palliative option at patients only in the most advanced stages of a terminal illness, has led patients to believe palliative care doctors will hasten their deaths — leaving Tremblay to try to convince them that good palliative care, delivered sooner rather than later, will improve their overall health.

Dr. Sandy Buchman, MAiD assessor and provider and Freeman Family Chair in Palliative Care at North York General Hospital, argued for MAiD as an expression of compassion.

“I went into this profession to alleviate suffering and ultimately, after years of reflection, came to the feeling that I could do the best in addressing suffering — when I encountered the limitation in modern medicine, including the limitation of palliative care and was unable to address my patients’ suffering — through the provision of MAiD,” he said.

At the same time, Buchman cautioned against formulaic, procedure-based application of end-of-life decision-making.

“I believe that too many clinicians in this world of MAiD will just refer when a patient asks for a hastened death, as opposed to exploring their suffering,” he said.

Over strenuous objection from Downar, Kaya argued that expansion of MAiD was sucking money and resources out of palliative care.

“We definitely need increased funding and resources in palliative care, which needs to be distinct from MAiD. Currently, right now, we have essentially all of us competing for the same resources,” she said. “My community (palliative care doctors and nurse practitioners) is distressed. We are burnt out. We are being asked to do more with less. Some of our community members have retired early. Others have left the field. Really, we need to be able to provide investments, sustained investment, in palliative care.”

Chochinov echoed Kaya’s plea.

“Winnipeg, city of about one million people, has not seen an increase in palliative care funding in the last 20 years,” he said. “We have 16 hospice beds, all located within the perimeter highway — none outside, beyond that in Manitoba. We are woefully lacking.”

The Catholic Health Alliance of Canada is not presenting at the special joint Senate-House of Commons committee on MAiD, but its opposition to MAiD is well-known, said CHAC president and CEO John Ruetz.

“We are strong advocates for the provision of high quality health care, particularly access to palliative care,” Ruetz said in an email to The Catholic Register. “We continue to advocate for issues of social justice and equitable access to health care, particularly for vulnerable patient populations.”

The Canadian Conference of Catholic Bishops is not participating in the committee hearings, but stands by its opposition to legalized euthanasia.

“We continue to consult like-minded organizations in discerning how best to respond to the current legislative process and anticipated changes,” said CCCB spokesperson Jonathan Lesarge.

While Viens insisted that before MAiD was legalized doctors “couldn’t deal with existential suffering, psychic suffering,” Chochinov pointed to medical textbooks, scientific journals and emerging therapies specifically dedicated to alleviating the suffering of people who feel their life has no meaning.

“This notion that MAiD is the only card in our deck I think is really terribly unjustified,” he said.

In defence of MAiD, Downer objected to any implication that paying doctors for MAiD assessments and procedures was taking money out of palliative care.

“MAiD is not the reason palliative care is under-resourced in Canada,” he said. “The reason that palliative care is under-resourced in Canada is because palliative care is under-resourced in Canada.”

As the politicians consider advance directives for people who fear living with dementia and delivering MAiD to people who would choose death to relieve mental illness, Chochinov warned them about the expansion of euthanasia in Belgium and Switzerland.

“If individual autonomy is the driver and we observe what is happening with our European brethren, we will see MAiD expand to include life completion and tiredness of life,” he said.

The committee hearings continue.