Ontarians deserve fully-funded palliative care: Cardinal Collins

A bill that would define how palliative care should be delivered in Ontario is a great first step, but Cardinal Thomas Collins and a parade of palliative care experts who came to testify on the Compassionate Care Act, Bill 3, were insistent they want more.

Their demands include full funding, concrete plans for minimum standards of care and political will to see that all Ontarians have a realistic chance to choose palliative care well before they’re staring death in the face.

“The bill is good. It’s a good start. It’s a framework and we need that,” Toronto’s archbishop told an online hearing of the Standing Committee on General Government Nov. 23. 

Without funding commitments and a pipeline in place to ensure qualified palliative-care specialists among physicians, social workers and nurses, a framework alone won’t actually deliver more palliative care, Collins said.

“It’s the horse, not the harness, that drags the coach along,” said Collins. “The best structure is not going to do anything unless you have actually someone who's going to do it. I’m afraid this is what’s going to happen, that we get a beautiful structure but unless we have people actually willing to keep at it, as the people who are engaged in the work are doing, it just stalls.”

“We all want better access. We all want it to be funded. Yet, it seems like — I guess the archbishop said it best — there is no political will to make this a priority,” said NDP MPP France Gelinas.

While hospitals administering MAiD (Medical Assistance in Dying) are fully funded, hospices that seek to accompany people along the road to a natural and meaningful death have to raise 50 per cent of their operating funds in bake sales and fundraising drives, said Canadian Hospice and Palliative Care Association executive director Sharon Baxter.

Hospice Niagara executive director Carol Nagy said her organization has to raise $1.8 million “every single year” to keep the lights on and pay her staff.

“How do you make sure that that is a sustainable income source as you are providing a way of life to a professional?” Nagy asked the legislators. As much as 60 per cent of some salaries at Hospice Niagara are funded through charitable giving, she added.

More and better home care or community-based palliative care depends on more and better personnel, said Dr. Leonie Herx, chair of palliative medicine at the Queen’s University School of Medicine.

“We don’t pay people well to work in the community. The turnover is very high. We end up with people who don’t have palliative-care skills and don’t know how to respond,” Herx said. “Then people end up in hospital because they can’t stay at home, if that’s where they want to be, or they can’t get into hospice, if that’s where they want to be — because we don’t have the resources. So we need a properly planned workforce that has the skill, and there needs to be funding to get people trained.”

Nagy testified that Hospice Niagara has to turn away between 300 and 400 people every year, sending them on to die in a hospital bed.

“So they end up where they don’t want to go, where it costs the taxpayers three times as much as if we had funded the hospice palliative care. None of this makes too much sense,” said Gelinas.

Collins went beyond the funding question to remind legislators that conscientious objectors to MAiD are not protected under the law.

“Conscience protection is very important,” he said. “We don’t have that in legislative form. We have some regulations. Regulations are not always that permanent or that effective”

Legal protections should shield doctors, nurses and medical students from the pressures of workplace or academic cultures that don’t feel the need to accommodate one person who can’t, in conscience, participate in the delivery of MAiD, he said.

“I am really concerned that people — nurses, doctors, medical students as they’re going through their medical training — are very often put under considerable pressure,” the cardinal said.

Below is Cardinal Thomas Collins presentation to the Standing Committee on General Government re: Bill 3, An Act providing for the development of a provincial framework on hospice palliative care (Compassionate Care Act), 2018:

Good evening and thank you for providing me the opportunity to speak with you about Bill 3, the Compassionate Care Act. I am grateful to MPP (Sam) Oosterhoff for bringing forward this legislation to develop a provincial framework on hospice palliative care in our province. 

As the Archbishop of Toronto, I serve as the spiritual leader for two million Catholics in the Greater Toronto Area. In my allotted time, I would like to focus on three key points:

Point #1 - The need to highlight what palliative care is and how it can foster a culture of compassion 

Palliative care is a great gift and one that desperately needs to be promoted and magnified so that Ontarians can both understand what it is and have access to it. 

Studies show that those in their final days fear two things above all else: loneliness and pain. Palliative care addresses both of these fears with compassion and love. 

I have personally spent a significant amount of time over the past four years speaking of the dangers of euthanasia in this country. While that is not the focus of this committee, it does have relevance. What started out as mercy-killing, turned to euthanasia, then more recently has been referred to as medical assistance in dying. That term is not correct when giving someone a lethal injection. The correct use of the term – medical assistance in dying is actually what palliative care is – assisting a patient compassionately, controlling their pain and surrounding them with love before they die. I witnessed authentic medical assistance in dying – true palliative care, first hand a few years ago as my sister entered into her final days. 

My prayer is that this bill, in addition to requiring the Minister of Health to more formally develop a framework for the various aspects of palliative care available, will also present an opportunity to help educate the public on how palliative care can offer hope and comfort for those who are dying; to help the public understand what is available for those facing a terminal illness. 

While it is not a goal of this bill, I encourage all Members of Provincial Parliament to speak about palliative care, highlight the incredible work being done by those in this field and consider opportunities or campaigns to educate Ontarians on how to access this critical service. This leads to my second point.

Point #2 - The critical need to expand palliative care as quickly as possible 

At present, only 30% of Canadians have access to palliative care. Despite promises from both federal and provincial governments to expand access, there has not been the political will to make this a priority. The development of a provincial framework that is called for in this bill will help push things along – yet we need more than a framework. We need palliative care to be a priority for our elected members of provincial parliament and to assign aggressive timelines, funding and accountability for its expansion. 

The provincial Ministry of Health website on palliative care reads: “Based on the experience of other countries, only a small number of Ontarians will choose to access medical assistance in dying. Patients with life-limiting illnesses will generally choose to access palliative care and other treatments.” 

There is no question that euthanasia has been a priority for the federal government. But if most people will choose palliative care if given the option, why hasn’t it been a priority for us? If the energy and resources given to euthanasia had been devoted to palliative care, I believe every Canadian would have access to palliative services at this time. 

I wonder how many of the 14,000 Canadians who have so far died by euthanasia would have made a different end-of-life decision had palliative care been available? 

We also know that the arrival of euthanasia in our country has impacted palliative care providers – they are increasingly being pressured to provide euthanasia, something that most providers see as completely contrary to their mission. We also see doctors, nurses and other health care professionals being compelled to participate in euthanasia with no conscience rights to protect their desire to do no harm to their patients. I ask that those creating this framework consider the dilemma that these palliative care workers find themselves in. 

Point #3 - The need to draw on the example of proven palliative care providers. 

Throughout our province we have a tremendous gift – palliative care providers that are quietly working each day to journey with people through the most challenging and vulnerable moments of their life. 

I know that many of these groups will participate in these hearings and they should have our gratitude and admiration. In the Archdiocese of Toronto we have the tremendous examples of groups like St. Elizabeth Health Care and Providence Healthcare. These and other groups provide some of the most robust palliative care in the country. 

I am pleased to see that the bill calls on the Minister of Health to consult with these providers. They have been engaged in this work for years – we should listen closely to their advice and ask them to be part of implementing both the framework in this bill and to partner on a path to expanded palliative care in the future.

In closing, I encourage the government to move as quickly as possible, to fast track the action items in this legislation as well as other initiatives to accelerate our palliative care framework, funding, resources and access throughout our province. 

I continue to be troubled knowing that only a third of Canadians have access to palliative care – it is no wonder other, darker alternatives are emerging in the absence of access to loving, personal and compassionate care. I hope that all political parties will support this bill and champion palliative care in any way possible. 

Let Ontario be an example for the rest of the country and demonstrate that compassionate care for our citizens is not only achievable but must be accessible to all.