As access to euthanasia gets easier, proper end-of-life care remains elusive, say advocates

The cry for more palliative care continues to grow louder in Canada.

While protesting the introduction of legislation expected to expand access to assisted suicide next  month, Canada’s bishops joined many advocates in decrying stalled plans to give Canadians the alternative of palliative care.

“As citizens, we see all levels of government, abetted by regulatory bodies and the media, give priority to those who want to choose euthanasia and assisted suicide while providing minimal funding and support for palliative care, home care and hospices,” said the bishops’ Jan. 31 letter to Prime Minister Justin Trudeau, signed by Canadian Conference of Catholic Bishops (CCCB) president Archbishop Richard Gagnon.

A guaranteed right to doctor-assisted death in Canada has still not been matched with a right to palliative care as the vast majority of Canadians continue to die among strangers in institutions,  either without palliative care or with too little palliative care delivered too late in their disease trajectory, palliative care experts told The Catholic Register. 

Of Canadians who died at home in 2016-17, even though two-thirds (66 per cent) received home care during their last year, less than one-in-six (15 per cent) received palliative care at home, according to a 2018 Canadian Institutes of Health Information (CIHI) report. Only six per cent of people in long-term care, and just 22 per cent of long-term care residents with less than six months to live, received palliative care. 

Only 15 per cent of Canadians die at home, even though 75 per cent say they would prefer to spend their final hours with family at home. In contrast, over 40 per cent of Medical Aid in Dying procedures provide death at home.

“Before you can even start looking at the data for MAiD, you have to make palliative care a consistent and equal access for everybody,” said palliative care specialist Dr. Sheri Bergeron. “Because if you don’t, then are people making this choice because there isn’t any other choice?”

Canada’s Catholic bishops and other opponents of MAiD aren’t wrong to suggest greater access to palliative care might keep voluntary euthanasia down to a dull roar, according to Bergeron.

“Are people still going to choose MAiD, even if they have access to palliative care? Probably,” she said. “But the bigger shame would be people choosing MAiD because of lack of access.”

“Experience has shown that patients are more likely to request euthanasia/assisted suicide when their pain is not properly managed by palliative care,” said the CCCB letter. 

"We know that MAiD is law. It’s now a right bestowed on all Canadians. I’m not sure the same can be said about the availability of palliative care as a viable option of care for all Canadians."

“Health care practitioners, elected officials and policy makers must not have recourse to euthanasia/assisted suicide as an answer to pressures and deficiencies in the current health care system given that an alternative already exists, namely palliative care.”

Governments have been talking about alternatives to medicalized and institutionalized dying for at least 25 years, points out Sr. Nuala Kenny, a doctor, retired professor of medicine and bioethicist. 

The first major report on the availability of palliative care, tabled in the Senate in 1995 by Senator Sharon Carstairs, was called “Of Life and Death.” In June 2000, Carstairs tried again with an even bigger, more detailed report called “Quality End-of-Life Care: The Right of Every Canadian.” 

The courts, however, have not ruled Canadians have a right to palliative care.

“We know that MAiD is law. It’s now a right bestowed on all Canadians. I’m not sure the same can be said about the availability of palliative care as a viable option of care for all Canadians,” Pallium Canada CEO Jeff Moat told The Register. “Fundamentally, Canadians now have a legal right to die, but they also have a right to live.”

Pallium Canada provides palliative care training to a broad range of health care professionals and has been working with the CCCB to produce education kits aimed at helping parishes ensure Catholics understand what palliative care is and how they can access it. The kits will be available in 2021.

“These (government) promises (to boost palliative care) go way, way, way back,” said Kenny. “We then legalized and decriminalized (voluntary euthanasia) first, before we delivered on the promise of hospice palliative care.”

The country’s largest provider of home care is seeing small, gradual increases in funding and access to palliative care at home, said St. Elizabeth Health Care chief clinical executive and senior vice president Nancy Lefebre. 

Ottawa’s Action Plan on Palliative Care is making some progress in making health care professionals and patients more aware of the scope and benefits of palliative care, she said.

“They’re overall trying to increase awareness and understanding. I think there’s a lot of work being done in that area,” she said.

In 2017 Parliament passed the Framework on Palliative Care in Canada Act, then spent 2018 negotiating with the provinces and territories who have responsibility for delivering health care. Funding agreements signed with provinces and territories in 2019 covered some aspects of palliative care.

In the 2017 budget the federal government committed to spend $6 billion over five years building up palliative care capacity across Canada. Health Minister Patty Hadju must report progress on the Framework on Palliative Care to Parliament in 2023.

“Some activities have already begun, while others are at the concept stage and will be developed further and rolled out over the coming years,” Health Canada spokesperson Natalie Mohamed told The Catholic Register in an e-mail.

Kenny sees very little happening to expand access to palliative care, despite the 2017 budget commitment and the 2019 Action Plan. 

“I still get all the medical correspondence. I’ve never seen anything since this announcement, and I’m involved in the area,” she said.

Whatever procedural safeguards result from the recent two-week, online consultation on MAiD regulation, palliative care is still in the shadows, according to Kenny.

“Medically-assisted death has become normalized so rapidly,” she said. 

Glen Horlock lost his son, fell on hard times, ended up homeless and sick with cancer. The Journey Home Hospice in Toronto is his new oasis of comfort and care

Sitting in his lounger with a flat screen TV hanging off the wall opposite and a drink in his hand, Glen Horlock is a happy guy. He kibbitzes with the nurses, needles the doctor and welcomes the opportunity to talk with a stranger.

At this point, Horlock, 63, has been in the Journey Home Hospice just east of downtown Toronto for about a month. The stroke is behind him but the cancer isn’t going anywhere. He eats as often as he likes and he’s never far from the kitchen in the centre of the four-bed hospice. He’s safe and warm and can’t believe his luck.

“It was weird coming here. They get you everything,” he said. “You’re pampered. You feel guilty.”

Not bad for a guy who has been living on the street for years, consumed with bitterness and rage over the 2006 murder of his 21-year-old son, drinking his way through every dollar that came his way. “Money don’t last long when you’re drinking,” he said.

At first glance the Journey Home Hospice doesn’t look like the lap of luxury. It’s four patient rooms, kitchen and tiny, crowded nursing office have been carved out of the sixth floor of a public housing apartment building. The walls all have tell-tale public housing paint jobs, haunted by all the other paint jobs that went before. It’s filled with furniture rescued from places that couldn’t wait to be rid of it. Scented candles and throw cushions make it cozy.

Managed and staffed by St. Elizabeth Health Care, Journey Home was set up in 2018 specifically for people like Horlock. In its first year it was home to 19 homeless men and women facing death. As it approaches its second birthday in May, work has begun on remodeling the apartment next door to expand Journey Home into a 10-bed facility.

"Journey Home is not like other hospices. Patients stay a bit longer. Often their health stabilizes and even improves simply because they’re eating regularly and sleeping in a warm bed."

“A unique population that wasn’t getting very much by way of palliative care services, even just health care services in general,” is how Dr. Sheri Bergeron describes Journey Home’s mission. “It’s a population that kind of gets forgotten, because traditional medicine is the way it is. … This is a vulnerable group.”

Journey Home is not like other hospices. Patients stay a bit longer. Often their health stabilizes and even improves simply because they’re eating regularly and sleeping in a warm bed. Sometimes their condition improves to such an extent that hospice staff has to find another home for them.

“That was a new skill for me,” said nurse Felicia Kontopidis, who is the Journey Home director of care. “Like a social work skill.”

Kontopidis spent seven years as a St. Elizabeth nurse making home visits in all the downtown Toronto shelters. She got a sense of why a hospice for the homeless might be necessary when she met with one of her patients in St. Michael’s Hospital. The patient had been diagnosed with lung cancer. As he was absorbing the diagnosis the doctor had to tell him that unless he could find stable housing, a normal course of IV chemotherapy was not a treatment option. If he was living on the street, getting sick from the chemotherapy on the street, there was simply no chance he would benefit from chemo.

“That was just sort of an eye-opener,” Konopidis said. “It’s unfortunate that (medical) decisions get made based on your housing situation and your economic status and other factors that have nothing to do with your disease.”

The idea of going to a hospice to get better doesn’t seem strange to Bergeron. The palliative specialist and adjunct professor at Western University’s faculty of medicine thinks optimal health is the goal of all medicine, including palliative care.

“Sometimes they actually get better, and that’s a good thing,” she said. “What looked like they were very close to end-of-life, now they’re living longer. Which is fantastic. Which is really the goal — living longer and living better.”

Not all the healing is physical. For Horlock, Journey Home has been a place to rediscover his humanity and let go of the grief and anger that has consumed him since his son’s murder. He never felt the courts gave his son justice and at one point crossed the country with every intention of killing the young man who was convicted in the death of his son.

When that plan failed he found himself back in Toronto, on the street, coughing up his lungs. The prospect of death and the time and space afforded by Journey Home has led Horlock to rethink his dedication to vengeance.

“I just gave it up, let it go — the hate,” he said. “I had to get over it.”

Horlock was born in this Cabbagetown neighbourhood, almost next door to the hospice. He wasn’t always homeless. He has run a couple of successful businesses, installing interlocking brick and doing landscaping and then a furniture finishing and repair business. 

“Except for my son, I’ve had a great life,” he said. “Two cars, a house — who can complain?”