Health Committee on March 9th, 2017

[The Chair, Liberal, Bill Casey]

I call the meeting to order.

Thanks very much, everybody, for being here. We're going to continue our study on Bill C-277, an act providing for the development of a framework on palliative care in Canada. I think we're all very interested in this and all very supportive. We welcome the testimony of our witnesses today. We look forward to your presentations.

On the first panel, from the Canadian Hospice Palliative Care Association, we have Sharon Baxter, executive director, accompanied by the Josette Roussel, senior nurse adviser to the Canadian Nurses Association.

If you could keep it tighter, it will give us more time for questions. Thanks very much.

Ms. Baxter.

[Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association]

First, let me thank you for allowing us to present this morning. I want to extend especial thanks MP Marilyn Gladu for putting the motion forward. We're thrilled to be able to present today.

The Canadian Hospice Palliative Care Association is the national association that provides leadership in hospice palliative care in the pursuit of excellence regarding the care of persons approaching death so that the burdens of suffering, loneliness, and grief are lessened. Hospice palliative care is aimed at the relief of suffering and improving the quality of life of persons who are living with, or dying from, an advanced illness or who are bereaved.

I noticed in the motion that there was a question about definitions. There are a number of definitions. If you refer to the brief we've submitted, on the last page we provide definitions for “hospice palliative care”, “palliative approach to care”, and “advance care planning”. These terms tend to get intertwined in people's thinking. Hopefully, that will be helpful for you.

We are pleased that there is a desire to develop and implement a framework designed to guarantee that all Canadians have access to high-quality palliative care. The provision of specialist hospice palliative care in acute care hospitals and residential hospices and the palliative approach to care provided in the community—including home care, long-term care, and other settings—have not received the attention, funding, and support that's needed in light of our aging population. It's going to become a critical issue.

Now, if I may, I'd like to take a little time to highlight some of the existing resources and documentation that could help you in developing and implementing a palliative care framework. To be clear, we are not starting from scratch. We have a lot of information and there have been a lot of reports.

CHPCA, my association, serves as the secretariat for the Quality End-of-Life Care Coalition of Canada. It was formed in 2000, so we've been around for 17 years. I'd like to give a quick shout out to a few of the coalition members who are in the room today. The Canadian Nurses Association, Pallium Canada, the Canadian Cancer Society, and the Canadian Society of Palliative Care Physicians are all in the room today. There are 39 national associations, including all the professional associations and disease-specific groups, and they've been working together for 17 years to try to highlight the issue of hospice palliative care.

At the end of our brief, we've also listed the coalition members just for your information, because, obviously, we don't want to take up the time today.

The Quality End-of-Life Care Coalition produced a guiding document called, “Blueprint for Action 2010 to 2020”, and it identified four priority areas of focus. They have stood the test of time through the last decade. The first one is ensuring all Canadians have access to high-quality hospice, palliative, and end-of-life care. The second is providing more support for family caregivers, including bereavement support through the federal compassionate care benefit and other opportunities. We actually have about six or seven different ideas. The third is improving the quality and consistency of hospice palliative care in Canada, including research, training, and education. The fourth is encouraging Canadians to discuss their wishes for their care in the future, including at end-of-life. We've often referred to this as advance care planning. It's called different things, depending on where you are in Canada. It's so Canadian that in different jurisdictions they call it different things.

Between 2012 and 2015, the Government of Canada provided CHPCA and the Quality End-of-Life Care Coalition funding for a three-year initiative called, “The Way Forward: An Integrated Palliative Approach to Care”. This culminated in the development of a national framework and the dissemination of practical resources and tools to help governments, policy-makers, regional planners, health service organizations, and health care providers on the ground to adopt a palliative approach to care. Indeed, five provinces are using it as a foundational piece of work in trying to push out an integrated model.

“The Way Forward” was intended to be a catalyst for action by raising the awareness and understanding of a palliative approach to care. The initiative also defined “hospice palliative care”, a “palliative approach to care”, and “advance care planning”. I refer you to the lexicon of terms. At the end of our brief, we've put some links to some of these documents and in “The Way Forward” we have a lexicon of terms. Hopefully, that will help you with your deliberations.

Traditionally, the last days or weeks of life are the most common time for referrals to hospice palliative care programs and services, if at all, and these are often reserved for individuals designated as “dying”. Those tend to be the patient who is dying with an end-of-life experience that needs specialist care—cancer patients, or those with HIV or AIDS or some of those diseases—but not necessarily those patients who are not designated as dying, like the dementia patient. Indeed, about 65% of Canadians die of diseases that do not necessarily need specialist palliative care, but do need a palliative approach to care. There is this nuance between the two.

The overarching goal of the initiative was to ensure more Canadians can live well until dying by enhancing their quality of life through the course of illness and through the process of aging, and not just in the last days or weeks of life.

In December 2016, just two months ago, CHPCA undertook an environmental scan of all the provinces and territories, as well as the QELCCC members, to determine where they stood in the implementation of a palliative approach to care. Given that health is a provincial and territorial responsibility, it is absolutely imperative to understand where their priorities lie to best determine how we proceed federally. The surveys provided important information that will drive the adoption of a palliative approach to care. Remember that the initial project was only $3 million and was a catalyst project, so it was just the start of the conversation.

The two surveys offered the following highlights. I'll name a few of them.

While public awareness is one driver of adoption of a palliative approach to care, we need to do more to enhance the understanding of a palliative approach to care and advance care planning with the public and health care providers. I think the issue of public awareness is an interesting piece of work that we really need to do. Most Canadians are confused about what hospice palliative care is, what a palliative approach is, what “do not resuscitate” means, what sedation is, and what your rights are among hydration, nutrition, and treatment. It's all blurry in the minds of Canadians, and we really need to do a much better job of giving them that information.

Next, a national education curriculum and ongoing continuing professional development through enhanced skills and training are needed for all health care providers across all settings of care. As well, conversations about the palliative approach need to be better integrated into usual medical care. This would help to make a palliative approach part of ongoing treatment and not necessarily a separate specialized or referral-based program, so that it becomes part of the care that anybody will receive when they're coming to the end of their life.

Also, ongoing advocacy efforts for a palliative approach to care must continue, particularly in light of the introduction of medical assistance in dying, which has created a need to clarify what hospice palliative care is all about, where it is available, and what more needs to be done to ensure that it is accessible to all Canadians. We've often said that it would be a shame if a Canadian chose MAID when they could have benefited from hospice palliative care, so we need to be able to make sure that they're given that opportunity. In addition, current care pathways need to include a palliative approach, and tools and materials for health care systems and professionals must enable adoption.

Last, we must ensure resources are available and dedicated to hospice palliative care and flexible to meet population health needs, including those Canadians who are members of the indigenous culture or vulnerable groups.

This final report was given to Health Canada just on Tuesday. There are several other great reports, studies, environmental scans, and evidence, such as the recent consensus statement and lay panel recommendations coming out of a November 2016 three-day Palliative Care Matters consensus conference that was held here in Ottawa. You can see that a lot of this is very recent. All the findings are consistent with the “Blueprint for Action” and many of the other reports. They include calls for a national care strategy; a national secretariat, including a national centre for research; a national public awareness campaign regarding the palliative approach to care and advance care planning, for the public and for health care providers; education and training for health care professionals; and caregiver support. As you can see, there is a great consensus among all these studies.

I notice that Bill C-277 references all Canadians. It is imperative that policy-makers remember that not all Canadians have equal access to health care—especially hospice palliative care—in this country. Vulnerable populations, including those who are indigenous, disabled, homeless or vulnerably housed, impoverished, or incarcerated are often forgotten. Innovative models for delivering hospice palliative care are required to meet these populations' unique needs and to address the barriers they face when accessing services.

Barriers to accessing high-quality palliative care include non-malignant diagnoses, geography—we do a much worse job providing services to rural Canada—poverty, lack of supports, comorbidities, mental health, and substance abuse all play into how these people do not receive the care they need at the end of their lives. When you say “all Canadians”, we really need to think about all Canadians.

Another group who are often not considered are children. A recent study from SickKids in Toronto that was finished in 2012 cited that overall only 18.6% of deceased children who might have benefited from palliative care received the care based on their diagnosis, and 25.2% had their care only eight days before they died. We can do much better. Pediatric palliative care has developed as an integrated model of care and can successfully be adapted in the adult population. We can learn from their experience.

In summary, we really don't need to study the situation any further. The studies and reports have all been done. The ample evidence clearly points to one course of action, which is to support and fund the agreed-upon priorities to make hospice palliative care accessible to all Canadians. Governments, health care associations, and organizations have all been partners in this, but corporate Canada has a role to play. The Canadian Hospice Palliative Care Association, my association, has a champion's council that is made up of leaders of industry and commerce. They've just launched a program called Canadian compassionate companies that highlights companies and organizations that accommodate—

[The Chair, Liberal, Bill Casey]

I'm sorry, Ms. Baxter, we have to move along, but thank you.

[Sharon Baxter]

I'll just finish then. It highlights companies and organizations that support the “caregiving at end of life” roles of their employees.

That was it.

[The Chair, Liberal, Bill Casey]

Thank you very much. I'm sorry to end it but we have to move on.

Ms. Roussel.

[Josette Roussel, Senior Nurse Advisor, Canadian Nurses Association]

Thank you, Mr. Chair.

My name is Josette Roussel. I'm a registered nurse and senior nurse adviser for the Canadian Nurses Association, the national professional voice representing nearly 139,000 RNs and nurse practitioners, including almost 1,400 nurses with specialty certification in hospice palliative care.

Nurses are leaders with a fundamental role in developing and implementing a palliative approach to care, and therefore, I am pleased to inform the committee that CNA is supportive of this important bill. I will now turn to the CNA's four suggestions, including several amendments for the committee's consideration. These are outlined in detail in the brief that we will submit to the committee.

First is the need for greater emphasis on a palliative approach to care throughout the bill. CNA advocates for a palliative approach to care enabled by advance care planning. This approach is guided by core tenets of palliative care, such as dignity, hope, comfort, quality of life, and relief of suffering. This care is provided earlier in the course of the illness, in all health settings, by a range of health care professionals. It involves physical, psychological, social, and spiritual care. CNA believes that the proposed bill must speak to the palliative approach to care as opposed to limiting the discussion to a specific service provided in the patient's final days.

We therefore recommend that paragraph 2(1)(a) be as follows:

defines what palliative care and a palliative approach to care is.

Second, we suggest expanding palliative care training and education beyond specialized palliative care providers. Research reveals that our country does not have adequate palliative care training for health care providers. One way to address this gap would be to include education and training in the core curricula for students in all health care disciplines. We, therefore, recommend that paragraph 2(1)(b) be amended as follows:

identifies the palliative care training and education needs of palliative health care providers as well as other health care providers.

Third, CNA encourages the committee to support the development and implementation of national evidence-based standards for integrated palliative care. Currently, there are no nationwide policies and evidence-based standards of care to ensure integration of the palliative approach to care across the continuum. In addition to not having a framework for palliative care, there are no standardized and widely adopted methods to guide health care providers, including nurses, on when and how to implement the palliative approach to care.

The lack of national evidence-based standards for integrated palliative care renders it impossible to collect relevant data and to track and report on key indicators. Therefore, provinces and territories have limited capability to understand whether, where, and how to improve palliative care. Therefore, CNA recommends that paragraph 2(1)(d) be amended as follows:

collects standards from research and data on palliative care.

Finally, I would like to address the provision of funding to develop a framework for palliative care in Canada. CNA supports the recommendations outlined in the 2015 Quality End-of-Life Care Coalition of Canada report titled “The Way Forward”.

The coalition calls for federal funding for the establishment of a national secretariat that would oversee development, implementation, and maintenance of a national palliative care framework. This would set strategic directions and lead to a coordinated, comprehensive, pan-Canadian approach to palliative care. Reinstatement of Health Canada's secretariat on palliative and end-of-life care is a move that CNA would support.

In closing, I emphasize that CNA is a strong advocate for high-quality palliative care that is accessible to all Canadians in settings that best suit their care needs.

I would like to thank the committee for providing CNA with the opportunity to speak on behalf of RNs and NPs in Canada on this important matter, and I look forward to your questions.

[The Chair, Liberal, Bill Casey]

We'd like to thank you both for coming.

We're going to start our first round of seven-minute questions with Mr. Oliver.

[Len Webber, Conservative, Calgary Confederation, AB]

Mr. Chair, I have a question with respect to the questioning. I had a brief conversation with the clerk here. Will there be only one round of seven minutes or are we going with what we usually do—two rounds of seven minutes?

[The Chair, Liberal, Bill Casey]

We'll have two rounds, seven minutes for the first round and five minutes for the second round.

[Len Webber, Conservative, Calgary Confederation, AB]

So it's just normal. Okay.

[The Chair, Liberal, Bill Casey]

Mr. Oliver, go ahead.

[John Oliver, Liberal, Oakville, ON]

Great. Thank you very much.

Thank you very much for coming and providing your testimony today. It's very much appreciated. Speaking for myself, and I'm sure most around this table, there's a real appreciation of the need for a palliative care framework in Canada. In fact, as we've introduced medical assistance in dying, if you want to call that a choice, if there is no other choice, if there isn't a good, robust palliative care system to support people, then are we really providing a choice for them? It's important that Canadians and their families have access to this. I think we all have our own personal stories as well of very difficult end-of-life circumstances that we've had to work through, so thank you for coming.

I'm highly supportive of the bill. I want to thank MP Gladu for her work on this and for bringing it forward to our attention. My comments are only meant to be helpful. We have one shot at this, so let's get it right. Most of my questions will be dealing with paragraphs 2(1)(a) to (f) under the framework on palliative care. The first one is about defining what palliative care is.

Sharon, you had introduced a hospice palliative care definition, and generally I think people turn to the WHO definition of palliative care.

I guess to both of you, will there be any controversy in deciding the definition of palliative care? I'm wondering if you have a different view, because your hospice definition is different from WHO's.

[Sharon Baxter]

The World Health Organization put out a definition based on a worldwide model. In Canada, unlike in the U.S., we've taken a different perspective on specialist palliative care. We don't differentiate between hospice care and palliative care in Canada the way they do in the U.S. Some of that was driven by the U.S. having a hospice benefit. We don't have that in Canada.

When we talk about hospice palliative care—or just palliative care, you can drop the hospice—it's what we refer to as specialist care, the stuff that happens in acute-care hospitals, usually with intense pain and symptom management, that type of thing. This palliative approach to care came out of a movement in Australia, to actually try to.... It's not the specialist palliative care.

You know, my grandmother at 93 had dementia and had been sick for seven years. She never took a pill. She was healthy physically but not mentally, so she needed a palliative approach to care. Even within Canada there's different jargon used. There's advance care planning and so on. I don't think there will be conflict. It will be interesting. The three definitions that we gave you are the ones we used in “The Way Forward” project, which seemed to get a lot of support, so it should be fine.

[Josette Roussel]

I think with the coalition we did agree on the definitions around palliative care and the palliative approach to care. It's important to emphasize the palliative approach to care, as it does mean reaching out to a larger number of individuals earlier in the system so that you have a clearer plan in place for later on. Both are needed. It's just a new concept and a concept that's not well understood, but it's very important in reality because of our contextual piece in the health care system.

[John Oliver, Liberal, Oakville, ON]

To me, palliative care can occur in a hospital, it can occur in a hospice, or it can occur at home.

[Josette Roussel]

Of course.

[John Oliver, Liberal, Oakville, ON]

It's really attempting to be responsive to the needs of the patient and the family around them, as long as you can manage things like other complications and pain management with it.

My second question is sort of around that. It's making sure that we have the words right on health care providers, palliative health care providers, and supporting palliative caregivers. There is no term “palliative health care provider”. We have health care providers who are providing palliation. We have caregivers who are providing palliation.

I'm assuming that we would want to make sure that we've identified the training and the educational needs of both health care providers and caregivers. Even for volunteers there would be palliative care training, right?

[Sharon Baxter]

Right now there are about 35,000 Canadians who are volunteers at hospice palliative care programs in this country. It's a loose number, because there's no one database on that, but it's considerable. They take the training through the hospice palliative care programs.

As we push out this palliative approach to care, we really need to start to talk to all Canadians. It's really important, what you've brought up. We haven't got our heads around what that really means.

[John Oliver, Liberal, Oakville, ON]

Just speaking with the words then and being a bit more focused here, it says, identify “the palliative care training and education needs of”, and I think, Josette, the wording of your proposed amendment was “of palliative health care providers” and “other health care providers”—

[Josette Roussel]

Correct. I wanted—

[John Oliver, Liberal, Oakville, ON]

—which confused me, because there is no palliative health care provider, so we're either training and educating health care providers....

[Josette Roussel]

We were suggesting a broader term to reach other health care providers—

[John Oliver, Liberal, Oakville, ON]

Yes, of all health care....

[Josette Roussel]

—all health care providers who will benefit from training in light of the previous discussion around the palliative approach to care.

[John Oliver, Liberal, Oakville, ON]

For you, is “health care provider” broad enough, or do you think we should be adding “and caregivers” in there?