THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY

EVIDENCE


OTTAWA, Thursday, October 6, 2011

The Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:30 a.m. to examine the progress in implementing the 2004, 10-Year Plan to Strengthen Health Care.

Senator Kelvin Kenneth Ogilvie (Chair) in the chair.

[English]

The Chair: Honourable senators, I wish to inform the group of witnesses that there is a small bit of business that the senators must deal with initially before we formally go to the full televised session. I will come back at the end of the budget aspect to bring us into the session with our witnesses and the other introductions.

With that, honourable senators, you have a budget before you dealing with the publication of the post-secondary education report, with a total amount of $21,500. Do I have a mover for the adoption of this budget?

Senator Eggleton: So moved.

The Chair: Thank you, Senator Eggleton. It has been moved. All in favour?

Hon. Senators: Agreed.

The Chair: Carried.

Thank you. We have approved the budget of $21,500 to go to the committee with regard to the PSE report. Thank you very much.

I wish to inform senators that following the discussion at the other meeting, it will be for roughly 1,500 copies as opposed to the numbers we heard the last time.

I will now formally call us into our session dealing with our examination of the progress in implementing the 2004, 10-Year Plan to Strengthen Health Care. Today's theme is home care.

[Translation]

Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.

[English]

My name is Kelvin Ogilvie, a senator from Nova Scotia. I would like to have my colleagues introduce themselves, starting on my right.

Senator Braley: David Braley, from Ontario.

Senator Seidman: Judith Seidman, from Montreal, Quebec.

Senator Champagne: Andrée Champagne, from Quebec as well.

Senator Demers: Jacques Demers, from Quebec. Good morning.

Senator Verner: Josée Verner, from Quebec.

Senator Dyck: Lillian Dyck, Saskatchewan.

Senator Merchant: Pana Merchant, Regina, Saskatchewan.

Senator Callbeck: Catherine Callbeck, from Prince Edward Island.

Senator Eggleton: Art Eggleton, Toronto, and deputy chair of the committee.

The Chair: Thank you, honourable senators.

We have four groups presenting to us today, one representative of each. Having no other instruction, I will proceed through as you are listed on the agenda. If that meets with your approval, then I will introduce you each as I call you to present.

In that case, the first on the agenda is the Canadian Healthcare Association. I would invite Pamela Fralick, President and CEO, to present to us now.

[Translation]

Pamela Fralick, President and Chief Executive Officer, Canadian Healthcare Association: Thank you, Mr. Chair. I am going to speak in English, but I am always ready to try to answer questions in French.

[English]

Thank you so much for this opportunity. It is always an intimidating process to speak to you because of the wealth of backgrounds that you bring to this table. We are very much looking forward to this exchange of ideas.

CHA is Canada's only federation of provincial and territorial health associations and organizations, which are directly responsible for allocating billions of dollars of health system funding and the delivery of a continuum of health services. We appreciate having been invited here today to address home care in Canada, but we also emphasize that CHA addresses health systems issues through the prism of a continuum of care. I will therefore be speaking of home care as just one pillar of continuing care, which is interconnected with long-term care, palliative care and respite care.

In advance of the session, we did submit a synthesis brief, which identifies key issues we feel are common to all four pillars of continuing care and which require our attention.

While recognizing that the purpose of the committee's business is to review the 2004 10-year plan in its whole, I would be remiss if I did not dedicate at least a few comments to the broader dimensions of this plan. CHA's board of directors is in the process of fully developing its assessment of progress and needed next steps, but there are several observations that can be made at this particular time.

First, CHA is indeed convinced that great good has come from the 10-year plan. While it may be possible to criticize the plan for those things that have not yet come to fruition — notice I say "not yet" — fully or in part, on the ground, pockets of excellence and accomplishment have emerged, thanks to predictable and escalating funding over the first seven years of the plan.

Second, however, there are, unfortunately, pockets of inattention and/or mediocrity as well, areas where we must do better.

Six areas, in fact, were identified by CHA's board of directors in June 2010. We strongly believe that if they are addressed, the health of the nation will benefit greatly. They include funding matters; health human resources; pharmacare; wellness, identified as health promotion and illness and disease prevention; continuing care; and leadership at the political, governance and executive levels.

We would be pleased to meet with you at another time to discuss these in more detail or respond to your questions today.

One of the most challenging aspects of the work that you are undertaking, and which so many of us in the field are trying to address, is how exactly to move forward. I believe that we do know what to do; the question is how to do it.

For instance, last year I undertook an informal and, admittedly, non-scientific assessment of 10 prescriptions for health, reports that were circulating in the public domain. My review included everything from the 2010 Canada report of the OECD, through reports from the Canadian Medical Association and the Canadian Nurses Association, to those from the TD Bank and journalist André Picard. I identified 21 issues that had been surfaced by these many reports. Interestingly, all 10 reports identified five issues in common. I conclude that we do know what to do. How do we proceed?

The focus of this 10-year plan has been on access. CHA would posit that it is at this juncture, the focus must be on quality and accountability. Access would remain a domain within or under quality, but all funding would be held accountable to show evidence of quality, and cost-effectiveness, of course.

There are several methods of quantifying quality, through the use of domains such as safety, effectiveness, efficiency, appropriateness, and so on. It would not be too difficult to establish a pan-Canadian framework for quality, and to hold all parts of the system, including home care, accountable for achieving standards. In fact, a major initiative involving 11 of our largest academic health science centres is about to release its first findings using common, comparable indicators. A quality approach is, indeed, within our grasp, as are metrics to which we can all be held accountable.

CHA has a recommended focus. Canada does an excellent job in providing world-class acute care services, and we should; hospitals and physicians have been the core of our systems for decades. Now is the time to ensure sufficient resources are allocated to other elements of the continuum, including wellness and continuing care.

On the wellness front, making health promotion and disease or illness prevention a priority has the potential to improve the health of Canadians and thereby decrease demand on several parts of the system. Home care is one readily available yet underused avenue for delivering health promotion and illness prevention initiatives and programs.

CHA has six recommendations in this area that we feel would be greatly helpful to the health of the nation. We would be pleased to share this position statement with the committee.

Second is continuing care, which I have already addressed as being broader for us than home care itself. We did the synthesis report, which you have in your possession, and identified four critically important themes: dignity and respect, support for caregivers, funding and health human resources, and quality of care. Might I take an additional three seconds of my time to repeat: dignity and respect.

Our paper, which you have, synthesizes all our major policy recommendations. We have a seminal report on home care, From the Margins to the Mainstream, to provide additional details.

In conclusion, and with regard to this session about home care — and might I add the other pillars of continuing care — there are many reasons why we collectively might discuss this topic as a priority. The scientific and popular press is replete with dire warnings about insufficient funds, the grey tsunami, and so on. One can find evidence both supporting and refuting the commentary, and increasingly refuting that this is in fact the issue. However, beyond the dollars — not that they can be forgotten — is the value system on which Canada is built and which drives our policy decision making. Addressing Canada's need for appropriate attention on continuing care is, quite simply, the right thing to do; and if we do it right, we can also afford it.

I thank you again for the opportunity to speak and welcome your thoughts and questions.

The Chair: Thank you very much.

[Translation]

The Chair: Now we are going to hear from Daniel Demers, from the Canadian Cancer Society, on a matter of public interest.

[English]

Daniel Demers, Director, National Public Issues, Canadian Cancer Society: First, let me apologize for only being able to speak English. I wish my French was as good as my name was.

Senator Demers: He is my son.

Mr. Demers: First let me say thank you to the committee for this opportunity to speak to you on this critical issue for us.

The Canadian Cancer Society is a national community-based organization of volunteers whose mission is the eradication of cancer and the enhancement of quality of life of people living with cancer.

First, a few facts: About 177,000 new cases of cancer will occur this year. Between 2006 and 2011, new cancer cases will increase from 160,000 a year to over 280,000 a year. Deaths from cancer will increase over that period from 68,000 a year to 107,000 a year. In all, two out of five Canadians will develop some form of cancer in their lifetime. That means this affects all of us.

When the First Ministers agreed on the long-term health accord almost 10 years ago, they made a commitment to improve health care for all Canadians. While there have been investments and progress in some areas — for example, wait times — there continue to be important gaps and disparities amongst Canadians in their access to quality and affordable care. My fellow presenters will make remarks on home care and palliative care, and we strongly support their comments. However, in order to make the most of your time, I want to focus my comments specifically on drug access as a critical component of home care.

Health care is now increasingly delivered in the home and in communities, and Canadians are being treated for longer periods of time. Too often, the cost of this care, previously paid for from public funds, is now assumed, in whole or in part, by patients and their families, often placing a significant financial burden on those already facing difficult medical and social challenges.

In 2004, First Ministers agreed that no Canadian should have to assume an excessive financial burden to access the drugs they need. However, this commitment has not been met, and patients are paying the price for this failure.

We know that when patients have access to the medications they need, their health outcomes are better and they are less likely to require very expensive institutional care. In other words, access to drugs improves the health of Canadians and reduces the burden on the health care system. It just makes sense.

Today, Canadians spend more of their own money on prescription drugs than on any other direct cost related to health care. We know that three quarters of cancer drugs taken at home cost over $20,000 a year. We also know that an increasingly large number of Canadians do not fill their prescriptions or do not take them as prescribed because of the costs. The financial burden facing patients is exacerbated by another problem that, quite frankly, is eating away at the very core of our health care system.

Canadians' support for health care is based on the principle that we will all be treated equally, which is why Canadians are shocked to discover, when they get sick, that this is increasingly simply a myth. Instead, their ability to access the drugs they need is increasingly determined by where they live and how much money they have.

We saw the most recent example of this growing inequity just this week. On Monday, the Quebec government accepted recommendations not to cover eight cancer drugs under the province's medicare program. Some of these drugs are fully paid for in other provinces, such as British Columbia and Alberta. One patient, whose drug was prescribed by his doctor to treat his cancer, faces charges of over $48,000 per year for his treatment, whereas if he lived in a different province it would be paid for by the government. This is unfair and unacceptable.

The Canadian Cancer Society, and many other organizations, calls upon all governments to keep their promise made to Canadians in the first health accord and establish a national catastrophic drug program. Continuing to fail to do so is not merely an academic exercise; this impacts on the real lives of real Canadians.

I would also be remiss if I did not mention one other issue, and that is prevention and health promotion. The 2004 accord recognized the importance of promoting healthy Canadians as a critical component of health care in Canada. Specifically, it directed health ministers to continue working on the development of healthy living strategies and other initiatives. While there have been investments made and measurable steps taken, much more remains to be done. As you know, preventing diseases is often as important as treating them.

The Canadian Cancer Society applauds the committee for undertaking this important review, but we also remind you that this review must not merely be looking back. It must inform our approach to the next health accord. We must address the failures of the last accord and build on its strengths.

In summary, we strongly support increased access to home care and palliative care, and we support the call for more initiatives related to prevention. However, we must call attention to the abject failure of governments to meet their commitment to establish a national catastrophic drug program. This must be addressed.

I will leave you with one other point, and that is that governments and institutions such as yours must continue to hear the voice of patients. Health care renewal is not about governments arguing with governments about dollars, policies, and jurisdiction. It is about the values that unify us as a country, including equality; and most important, it is about the health and quality of life of all Canadians.

The Chair: Thank you very much. I will now move to the Canadian Home Care Association and invite Nadine Henningsen, Executive Director, to present to us.

Nadine Henningsen, Executive Director, Canadian Home Care Association: Thank you so much for inviting me to present today. The Canadian Home Care Association represents stakeholders from governments, service providers and researchers involved in home care across Canada.

Most provinces use the definition of "home care," and I will share this with you:

. . . an array of services for people of all ages, provided in the home and community setting, that encompasses health promotion and teaching, curative intervention, end-of-life care, rehabilitation, support and maintenance, social adaptation and integration and support for the informal (family) caregiver.

It is important to note that within home care programs, they are designed to complement and supplement, but not replace, the efforts of individuals to care for themselves, with the assistance of family, friends and the community. As a matter of fact, family caregivers often provide more than 80 per cent of the care required for individuals with long-term conditions.

Today, an estimated 1.8 million Canadians receive publicly funded home care services annually, at an estimated cost of $5.8 billion. This actually only equates to about 4.3 per cent of our total public health care funding.

There are a number of initiatives within the home care sector that need to be addressed. Establishing a set of harmonized principles across Canada, accelerating the adoption of technology, optimizing health human resources, and integrated service delivery models all merit comment. During our discussion, or at a later date, I would be happy to expand on any or all of them with you.

However, today I would like to focus my remarks on what we have learned through the implementation of the home care services articulated in the 2004 10-Year Plan to Strengthen Health Care and on what we believe, as an association of stakeholders, is a natural progression to build on and leverage the investments that have been made.

In March of this year, my association convened a meeting of stakeholders from governments and service providers across Canada to share observations and lessons learned from implementing the home care services within the 10-year plan.

For short-term, acute home care services, there was a marked increase in the volume of services and the individuals served. There was also another benefit, namely, improved integration between home care and the acute care sector.

Unfortunately, there were two unintended negative consequences that resulted from the focus on acute home care. One was a reduction in chronic care services for the elderly and, as my colleague Mr. Demers mentioned, a shift in the burden of costs for drugs and medical supplies to individual and families. This was due to early discharge and the fact that often a number of provinces do not cover the drugs and supplies under their publicly funded program.

Stakeholders across Canada generally agreed that the end-of-life expectations within the plan were largely met, but there are still a number of challenges, two of which are access to services and awareness and advance care planning. I will let my colleague from the Canadian Hospice Palliative Care Association go into more detail on that.

The short-term acute community mental health home care services for individuals with mental health diagnoses are not currently included in the mandate of most home care programs. What ended up happening is that most jurisdictions flowed the funding to ministries or other government departments that provided services through established mental health organizations. There were few provinces — as a matter of fact, Saskatchewan being one of the unique ones — that actually flowed the services through home care.

The home care sector has experienced benefits from the 10-Year Plan, and it is important to build on this momentum. We believe that clarifying expectations, removing barriers to integration, funding outcomes in quality care and measuring results are the way forward.

I would look to share three specific areas that we feel will have a significant impact.

First are integrated services, that is, the right service at the right time and place. Every day, 7,500, or 14 per cent, of acute care hospital beds are inappropriately used across Canada. Over a single year, the use of acute care beds for alternative level of care, or ALC patients, exceeds 2.4 million days. These are patients who do not require the heavy intensity of needing to be in a hospital.

ALC is a complex, serious system issue that impacts patient care, safety and quality of life, and it costs a lot of money. While not absolute numbers, I would like to share some estimates of the average per diem cost, which is approximately $850 in a hospital, $126 per diem in a long-term care facility, and $42 in home care.

Across Canada, an estimated 30 to 50 per cent of ALC patients could and should benefit from home care services and be discharged from the hospital.

Shifting funding and designing new funding models so that home care programs can be maximized must be part of the future discussions. Also, avoiding the admissions to hospitals that so often result in an ALC designation needs to be part of the plan. Frail seniors need supportive chronic care to stay safely and independently in their home. As Mr. Demers mentioned, sometimes it is as simple as medication management, which is not a costly service.

Second, adopt a Canadian caregiver strategy. Providing care in the home is dependent upon the active involvement of the family caregiver. While most caregivers assume the responsibility willingly, there are situations that create extraordinary financial and health challenges.

The good news is that a number of jurisdictions and provinces have initiated policy and practices to support family caregivers. The challenge is that these programs vary widely across the country and are not well shared. The next step for the accord could be the establishment or the support of a national body to accelerate action in order to achieve and adopt a Canadian caregiver strategy.

Third, support accountability and evidence-informed decision making. A lack of comprehensive data tracking, reporting and monitoring has been identified as a major challenge by every home care stakeholder across Canada. A national resource with expertise in health data management and analysis to support jurisdictions to collect and interpret information at a clinical program and systems level is needed to support accountability and decision making. Knowledge transfer and sharing of best practices could also be an outcome of this particular entity.

Securing Canada's system of universal health care involves embracing a paradigm shift. The integrated approaches to care between home care and acute care provide a strong foundation for strategies to address our ALC challenge across Canada. The return on investment for every dollar for home care is exponentially enhanced by the in-kind contribution of family caregivers. Access to expertise and utilization of technology to support data collection, analysis and reporting will support accountability. Home care stakeholders want to be accountable; they do not have the tools and information to be able to do this.

In conclusion, in 2004 First Ministers identified home care as an essential part of modern, integrated, patient-centred health care. We believe that these recommendations will make a significant contribution to make this so.

The Chair: Thank you very much. I will now turn to the Canadian Hospice Palliative Care Association and Sharon Baxter, Executive Director.

Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association: Good morning. Thank you for the invitation to come and speak to you today. I congratulate the committee on this important work of reviewing the progress and uptake of the 2004 10-Year Plan to Strengthen Health Care. It is my understanding that you would be interested in hearing from the Canadian Hospice Palliative Care Association around the palliative home care component, so we will speak specifically to that.

In June 2004, the Quality End-of-Life Care Coalition of Canada — which, I must add, every one of the members here are members of; there are 35 national associations, but CHPCA acts as the coalition secretariat — released a report called Dying for Care. It was a status report on hospice, palliative and end-of-life care in Canada at that time. It was released about six weeks before the accord was signed.

We identified a number of areas that needed to be worked on, which included the definition of hospice palliative care funding issues; inconsistent access to hospice palliative care services generally and also to respite care services; access to non-prescribed therapies, as well as prescription drug coverage, which we have heard from everyone here; palliative care research; and access to best practices across Canada. Those were the areas that we laid out.

This report also announced the federal initiative around the Canadian Strategy on Palliative and End-of-Life Care. This, by the way, was terminated by the federal government in March of 2008. It also mentioned a $7-million investment in CIHR-funded palliative care research. That research initiative subsequently grew to $16.5 million. It also ended in March 2009.

The report also highlighted the announcement of the compassionate care benefit, which provided eight weeks' leave, of which six weeks was paid through the EI benefit rate. If you were caring for a terminally ill parent, child or spouse, that was subsequently expanded to include others that the patient may feel are family, which was a good initiative. It still stands at six weeks’ paid support, and of course it only applies to Canadians who qualify for EI. Of course, you need to be working to do that, so a lot of the seniors do not qualify for some of these initiatives.

The report made a number of recommendations at that time. We saw some of them incorporated in the 2004 accord in the Palliative Home Care Program. It laid out services for case management, nursing care, palliative-specific pharmaceuticals and personal care workers.

We reviewed the announcements of the four areas of home care and we saw that as a good start. Subsequent to the 2004 accord announcement, the Canadian Hospice Palliative Care Association and the Canadian Home Care Association embarked on what we called the Gold Standards Project, where we actually set the gold standards for those four areas. We shared those gold standards with the provincial and territorial governments, and also the federal government. They were also involved in helping us set the gold standards.

We then pledged that we would measure the uptake from the federal, provincial and territorial governments two years forward, and we did do that. In 2008, the Quality End-of-Life Care Coalition released a progress report on how the federal, provincial and territorial governments were doing on initiating the gold standards.

All these reports were given to you. It is a lot of reading, but I encourage you to take a look at them. Clearly, progress was made in 2008, from the 2004 accord.

For example, in 2005, only five provinces had a palliative pharmaceutical plan that would cover your drugs in the home for the last six months of life. Effective last Monday, September 26, the last province, Nova Scotia, announced a province-wide palliative pharmaceutical plan.

We have gone from five provinces to the full coverage. It is certainly not without its dilemmas. Not all the drugs that we feel are covered in the hospital are covered in the home-based plan, and the plan is not always easy to get access to, but it is a good start.

We are also concerned about the siloing of end-of-life care services across settings. I endorse Ms. Henningsen's comments around the barriers of home care from the acute care setting and the ALC dilemma that we all face. We have much to do, and we believe that Canadians should have the right to choose the settings of their choice. We need to look for a more seamless transition between settings.

In 2010, the Quality End-of-Life Care Coalition of Canada released its 10-year plan. I encourage you all to reference it if you can. We have four main areas that we proposed in the original accord. We have been measuring in the accord what we need to pay special attention to in the next accord.

One of the four areas is to ensure that all Canadians have access to high-quality end-of-life care. Seventy per cent of Canadians at this point in time do not have access to hospice palliative care, so about 30 per cent do. Obviously, we can do much better than that.

One of the reasons for that is that we have created an acute care system that we could argue is one of the best in the world. As we are all aging, we need more of a chronic care system, and we do not really have that. How do we go from having a terrific acute care system to having maybe a slightly smaller acute care system but obviously look toward a chronic care system? Truthfully, as a 55-year-old, I think we will all need some of these programs and services, and they are not necessarily available right now.

One quick piece is that last summer, The Economist released a document that looked at palliative services across 40 countries. Canada came ninth in the world. It could do better, but that is not bad. What we did do poorly on is that we came 27th out of 40 countries on the cost of the last year of life, which is passed along to the patient and family. The reason that is so high is because we pay a large percentage of our home care costs. Canadians are choosing not to die in an acute care setting or have a lot of their services given to them in an acute care setting, and they actually want to be served in their own communities. Those costs, which are coming out of their pockets, are increasing. That might be all right, but it leads me to the question of how 26 other countries did better than we did, and we need to look at some of that.

The second area in the blueprint for action is the support for family caregivers. We need to figure that out. More and more services are being taken up by all of us. I took care of my grandmother for a number of years. It is difficult to balance all of that. We need to look at some of those initiatives, and we have some ideas in the blueprint.

We need to improve the quality and consistency of hospice palliative care in Canada. We need to invest in more research. We need to do better than 30 per cent coverage. There are some issues around all of that.

The last area is to encourage Canadians to discuss and plan for their end of life. We have launched a campaign called "Speak Up: Start the conversation about end-of-life care."

We need to talk about advance care planning, and Ms. Henningsen alluded to it. We have good research that says that if you talk to loved ones about your end-of-life wishes, you still die, but the outcomes in that stressful time are usually better.

In summary, gains have been made, but our population is aging. The increasing need for home-based care requires us to step up and strive for a comprehensive, coordinated and integrated approach to hospice palliative care and health care. We need to see it across all settings of care, not just home care: all diseases, all health care professions and all ages. Much more needs to be done.

In planning the 2014 accord, however that might look and take shape, we need you to pay attention, and we need to all pay attention to hospice, palliative and end-of-life care across all those settings. Integration of hospice palliative care within the health care system is the only way to proceed, but we have much to do to do that.

In closing, we just wanted to say that all the reports that I have mentioned are in a package that we have arranged for you to have.

The Chair: Thank you all very much.

I will turn to my colleagues to pose questions. I would remind them that they set a new standard for effectiveness in asking questions yesterday, and I hope that will carry forward.

Senator Callbeck: Good morning, and thank you all for coming. Mr. Demers, you talked about the catastrophic drug plan, and that is something that certainly concerns me, and I think all Canadians. You mentioned someone paying $48,000 for drugs in a province, and if they had been in another province that province would have paid for them. Where do you see the federal government in this? Should they have a leadership role in a catastrophic drug plan?

Mr. Demers: We feel the federal government should be playing a leadership role, and we know that provinces have asked the federal government to convene a table to discuss this issue.

If we look at what we all understand to be the role of the federal government, it is to try to ensure the equality of Canadians under the programs that, collectively, governments provide. We are not going to prescribe that the federal government should play a specific role as the funder of last resort or the adjudicator of which provincial program works the best. However, Canadians expect the federal government to work with the provinces to ensure that, when they get sick, there is roughly equitable care available, and that the cost to the individual, the family and community is roughly equal.

The provinces have certainly gotten together. If we look at something like pCODR, the pan-Canadian Oncology Drug Review, which is the new process to decide on cancer drugs, the provinces are working together to make that system more effective. That is a great success story, and the federal government is playing a role. Provinces and organizations such as ours expect the federal government to convene a table to sit down and say what the best practices are across this country, what are the gaps, where are Canadians falling through those gaps and what could the role of the federal government be in ensuring those gaps are taken care of.

If we wanted to say that we could bring everybody to the lowest common denominator, that would not be what we want. There are enough best practices, enough interesting examples of catastrophic programs throughout the country. Our problem is they are not equal, and therefore Canadians are not all equal. That is the responsibility of the federal government. They have not taken up that role, and that is a problem.

Senator Callbeck: Would anyone else care to comment?

Ms. Fralick: To support the comments Mr. Demers made — I almost hesitate to bring it up — the Canada Health Act is there. One of the tenets of that is universality. From the membership of the Canadian Healthcare Association as well, this is an absolute need, that Canadians are not treated in an inequitable fashion. How exactly it happens, I support the comments from Mr. Demers. That needs to be worked out, but there is an expectation that that happen, and that the federal government should be flexing its fiscal spending power in a way that allows that and leads that to happen, while respecting the provincial delivery priorities and responsibilities.

Ms. Henningsen: It goes even beyond the fiscal spending power. As Mr. Demers mentioned, the federal government has a unique opportunity to see Canada as a whole. Where every province is working within their province, the federal government can bring the provinces together. There are a lot of innovative approaches to drug management, whether it is therapy management, access to drugs, ensuring that individuals fill their drug prescriptions. There are a lot of ways to manage costs of drugs, and it is access to drugs that has nothing to do with the actual funding of them. That could also be a key role the federal government could play, is sharing some of these unique initiatives that are happening across the country.

Ms. Baxter: At end-of-life, the medication costs can actually be very high. We have found that people were going into hospital because they were not able to afford their drugs in their home-based program. The short-sightedness of some of these things is outstanding when you think about what we pay for an acute care hospital bed over a home-based bed. We really need to look at that.

There is a clear role for the federal government. Right now we have 13 — 14, including the federal government — different types of drug coverage in this country between the federal, territorial and provincial governments. Some of this, particularly around catastrophic drugs, would be great if we were all on the same page and it did not matter where you lived in this country.

Senator Callbeck: That leads me into the other area I wanted to talk about, and that is alternative level of care. We hear stories all the time of people staying in hospital because they cannot pay for their drugs if they go home.

In the Canadian Home Care Association brief you mentioned a national body should be established to facilitate action in order to achieve the adoption of the Canadian caregiver strategy. On the Canadian Hospice Palliative Care Association, it was mentioned here about six different areas to look at. Are there committees working on those? Is palliative care one?

Ms. Baxter: Within the federal government, is that what you are asking, if there is a committee working on palliative care specifically?

Senator Callbeck: It was in the brief from the Canadian Healthcare Association; there are six areas mentioned here. Is there a committee set up on each of those areas and working on them?

Ms. Fralick: No, there is not. That is why we are identifying them for some action, hopefully coordinated.

Senator Callbeck: Ms. Henningsen, the brief you have is for a national body. Do you see the federal government taking the role there?

Ms. Henningsen: To support family caregiving?

Senator Callbeck: Who will set up that national body? Is it the responsibility of federal government?

Ms. Henningsen: Yes, I would definitely see that as the role of the federal government. What is interesting is that there is no committee now working on family caregiving. However, what happened is family caregiving is such a big issue right across all the health care sectors that there has been a strong grassroots movement. The Canadian Caregiver Coalition has embraced a wide variety of organizations that have moved forward with this Canadian caregiver strategy. They have been working federally and provincially to get interest and governments going.

What I see happening from a federal point of view or federal funding for an entity is in Manitoba they have made great strides and done a lot of consideration and a lot of work on supporting family caregivers.

In New Brunswick they have done some great things in support of family caregivers. Ontario is looking at it now. What if we had someone to share the results, the thoughts, the programs Canadian-wise, so that you do not always start from ground zero, that you build on each other.

It is all the same common problem, and this grassroots organization has identified this common problem and some very concrete solutions. It could happen. We could accelerate a Canadian caregiver strategy and support that vital role of caregivers easily. It does not have to be just the government. It can be private industry, in fact it must be. One of the key elements of the strategy is providing flexible work environments. You have to be able to know you can take some time off work.

Senator Merchant: Good morning, and thank you for your presentations. I have read what I take to be very reliable statistics that 25 per cent of the health-care needs of a person occur in the last year of life. I have also seen a statistic that says that a person's health-care needs in the last two years of life can be as high as 75 per cent.

Do you have a number that you could share with us? Apart from the shock value of these statistics, what do you really want us to draw from this?

Ms. Baxter: Interestingly, 25 years ago people died within about two years of having a heart attack or a stroke in this country. Now we are living, on average, 12 years after, and I always say that is a good thing. Canada has one of the highest age levels in seniors, and we have more and more people becoming seniors. This whole chronic care area, on average your last 10 to 12 years, will increase. We will have draws on the health care system like we have never seen before, but it is manageable if we get ahead of it.

When talking about the cost in the last year of life, indeed, when dying of a disease like cancer or ALS, or any of those, truly the biggest costs are in the last year.

On the other side of that debate, we have to start to think about the use of advanced technology when there is very little outcome that will be had. I work in hospice palliative care, and we are always struggling with whether to recommend someone go through a fourth line of chemo when it will give them six more weeks of life when we can manage their pain and comfort in a different way.

It is something that we, as health care providers and as a society, need to put our heads around. There are both sides to that. We need to really think about that and leave that decision up to patients and families. We need to be honest with them and have these conversations. Often we are not having them. It is like the Energizer bunny, we keep on treating, keep on treating, and we need to balance our systems between a curative system and a system that will actually give comfort to someone moving toward the end of their life.

Ms. Fralick: I would like to add to the theme of what is at the table now. I made reference in my comments to the increasing data coming out and that the costs are really not about the end of life, not to take away from the dignity and the need to address them. Both the Canadian Institute for Health Information and the Canadian Health Services Research Foundation have produced reports this year saying it is chronic disease management that needs our attention as we live longer, because of advantaged technologies, et cetera, yet we still have this very ill population.

When we are talking about home care, which is at the table today, but looking at the full breadth of the health system, which I know is your broader interest, I think that cannot be forgotten, and looking at the data that is emerging and talking about the costs, both dollars and in a personal sense, of chronic disease management as opposed to that last year or two of life.

Ms. Baxter: To go back to the ALC issue. A friend of mine has an 82-year-old husband who spent 18 months in the Civic Hospital waiting for a long-term care bed in this city. He has dementia. He was on ALC. The costs that she needed to pay, the cost to the health care system, is hugely outweighed. However, if we had a better system where we looked at all settings of care and had a seamless transition, more home care and long-term care in balance and in seamless transition, we would not have those problems. Right now the wastage of that and the cost is huge.

Mr. Demers: I want to add that, besides the statistics, I think a really important issue is who those costs are being transferred to. Unless we come up with solutions such as having people make their desires known, unless there are options to take, they will increasingly either end up in expensive institutional care or they will, to a considerable degree, transfer those burdens to the individuals and the families.

When we look at the renewal of health care, we have to accept that the days of institutional care being the focus of our health care system have passed, and that there is now a third leg of the stool. That is community and home care. Unless we find ways to ensure that individuals can provide the care, the love and support they want to provide without huge costs to them, psychologically, financially, socially — and those are particularly women. Over 70 per cent of caregivers in Canada are women. They willingly take on this burden because they are good people; it is what they want to do. The patient wants to be in that setting, and it is better for them. However, if we do not find the instruments to make that happen, we will find that the people are not getting the care they need and deserve, and the system cannot afford the costs.

I agree that the costs are very important, but we have to focus on ensuring we are not transferring those costs through inaction down to individuals and their families.

Ms. Henningsen: I will build on Mr. Demers' comment. It is not just a system shift or a cost shift. I will give you a great example. There was a program run in one area of Ontario for ALC and shifting to the home and community. They had invested in a lot of community supports. There was respite and increased home care. There was a whole menu. Sure enough, the hospital ALC rate never went down, and they could not understand why, because they had invested all this money, the supports were there.

What they realized is it was a mind shift of the health professionals in the hospital. They had to embrace and accept that the right place for an individual was to go home first, then make that decision of where they want to go for long-term care. Do not make that social decision in the hospital. Go home first. That whole concept and mind shift that home is safe, home is where you want to be, with supports, then make the decision. They have seen incredible results now, as soon as they made that mind shift, which was fascinating.

Senator Merchant: The Romanow report in 2002 suggested that $89.3 million be committed annually to palliative home care. Do you have any idea what has happened since then?

Ms. Baxter: As one of the people who testified before the Romanow commission, we had great hope and expectation of some of the recommendations that came out of that. Indeed, that never happened.

What happened was a federal strategy on palliative and end-of-life care was announced in 2004, ran for five years and was terminated. At best it was never funded for more than $1.7 million. When you look at this as one of the only things that will ever happen in our lives that we can all attest to, it was woefully underfunded.

I was actually the co-chair of it, and we did some phenomenal work. Not to appear all doom and gloom — I think we have made some great gains — but that never really happened.

One of the issues, to have a truly integrated program, we will need to have a federal, provincial, territorial and community engagement process. It will be important that community and business, and us as family members, all take part. It is not just a federal government thing, but obviously we have a long way to go.

Senator Seidman: I have many questions, but right now I would like to perhaps put forward two: one to Ms. Fralick and one to Ms. Henningsen.

Ms. Fralick, I would like to discuss the big issue of integration of care. In fact, we all hear stories of backup in the ERs and lack of hospital beds because acute care beds are filled for chronic care purposes. This forces us to think about what you referred to as continuing care and the integration of home care services with primary health, acute and long-term care.

Could you address this in relation to what the barriers are to a better continuum of care, as you see them? Perhaps you could give us examples of best practices across the country in relation to this.

Ms. Fralick: I wish I had the silver-bullet answers to those two excellent questions. The most important thing is we do not have the best answers to those. That is part of the process that we are all involved with, not just at this table but outside.

In terms of barriers, the list is very long. Ms. Henningsen mentioned one already that would appear to be the mindset. We are so conditioned in this country to focus on acute care. Our Canada Health Act, which CHA is a strong supporter of, we do not want to see that go away, but it unfolded over a series of decades, frankly. The culmination in 1984 was of many pieces of the development of the health system, but totally focused on acute and physician care. The world has changed, but we have not necessarily done so.

The lack, I would say, as well, just of basic infrastructure. Because our publicly funded focus has been on hospitals and one provider — physicians, for the most part — we have not considered how to bring the other pieces into the equation.

Just as one example, in the recent recession where there was special infrastructure funding available to stimulate the economy, the health system was not allowed to avail itself of that. We tried. We advocated diligently, but we simply were excluded from that. Just the barrier of infrastructure would be a big piece.

Standards we mention as another piece. Again, the focus of this country is on the acute care, so we do not look outside. Many issues have been mentioned in terms of just quality of care, the support for caregivers, all of these pieces that we have laid out in our own paper.

The barriers, again, I could take up all the time of the committee. I am looking at the chair, and I know at some point I will be cut off. I will refer you to our paper, which does identify quite a few of them, and leave it there.

In terms of best practices, I am probably not the best person to speak to some of them. Ms. Henningsen and Ms. Baxter have mentioned some there as well. What I can tell you is that there is a real concern amongst my members regarding the disconnect. We do not do well in this country at integrating and sharing our information. It is not that we are bad individuals. Everyone wants to do that, but we are set up in isolation, in silos, and we have 14 systems, not one. People sometimes ask why we cannot be like the national health system in the U.K. or Sweden or France or something. We do not have the system that allows us to do that.

There are pockets of excellence. I do have another paper that is not quite completed, but it identifies quite a few of those pockets of excellence right across the country. Most of the provinces are reflected in there, and that will give you the details. I will be happy to bring that to your attention as soon as it is available.

Senator Seidman: Yes, please. Thank you.

As part of the 10-year plan, first ministers agreed to provide first dollar coverage for certain home-care services, based on assessed need, by 2006. The specific services included short-term acute home care, short-term community mental health care and end-of-life care.

It appears that health ministers were to report to first ministers on the implementation of that by 2006, but they never did. That could feed into our whole accountability issue here.

Ms. Henningsen, does the Canadian Home Care Association have a vision for enhanced integration of mental health services within the broader health care system?

Ms. Henningsen: That is interesting. I will back up, if you do not mind, before I actually address that question.

Around the table we have been talking about where the federal role is and how the federal government can make a big difference. When you talk about integration, I have to share a fantastic best practice that has caught on right across Canada. The primary health care transition fund was a direct, federally funded program, and it rolled out across Canada. What it really looked at was integration models.

One of the ones we were involved in was integrating home care and primary health care. That model started in Ontario and has now rolled out through all of B.C. They are looking at an integrated model of home care, primary health care, palliative care, social care, and they are starting to bring in mental health care. It has gone through four different regional health authorities in B.C. It was exciting to see from a concept, to a pilot project, to reality. I just had to back up on that one.

One of the challenges we find with the integration of mental health services is the past, where home care came from. A lot of eligibility rules are built on physical assessment. It is a physical assessed need. Very often a mental health diagnosis is overlooked, or when it is identified the home care providers do not have the skills and expertise to be able to manage it, hence it moves then over to the community mental health program.

In some strong provinces, like Ontario — in Saskatchewan it is a little more integrated with the home care services — you do see some integration, but really it is kind of like they are very strong silos and we have not seen a lot of integration.

Do we believe that our experience with integrating primary health care and integrating with acute care — our next big challenge will be mental health. We know that because of an aging population and dementia challenges. The number one reason why an individual is admitted to a long-term care facility is because of behavioural problems in the community. We have to move there. Have we? No.

Senator Martin: I found all of your presentations extremely compelling. All of us around the table, I am sure, have been touched by this issue, whether it is cancer or mental illness or having to care of an ailing mother, father or grandparent.

First of all, just a comment about what you were saying about the system shift, the cost shift, the mind shift. I think what could or should happen is a cultural shift. In some cultures there is that responsibility, there is a shared responsibility with the government, in that the government as an entity is federal, but on the ground, in the home, the families have this shared responsibility. I do not even think about it as a responsibility, I think of it as just what we do as families. I put that out there, as we need a cultural shift where we look at the best practices of other cultures to use in Canada.

My question goes back to the health accord, because I think, from all the presentations that we are hearing, each of these silos or associations or specialized groups are doing some amazing things. You are achieving success in your respective areas, with the challenges we have with the overall demand of the system.

With the health accord it is very critical that it is a tool that can be used to bring the stakeholders together to facilitate the provincial-federal relationship.

Could you speak to specifically what you have mentioned just in terms of the success of the last health accord? What has really worked well and what should we be articulating, including and recommending to the minister in the next health accord that will be up for renewal? It is focusing on the health accord as the tool.

I think ideally we would love to have the national strategies and programs, but just like with anything in Canada we are limited by the sheer geography, the rural-urban vast differences in need, and the specialized areas which have, in and of themselves, such intricate systems as well. The national picture is the ideal vision, but not always the most practical. The health accord is a tool that is there.

I would love to hear from you what should be articulated in the health accord. A few key points from each of you would be helpful.

The Chair: Each of you will want to want to weigh in on this. Please be focused and do not re-emphasize points already made.

Ms. Baxter: I think that in end-of-life care the big issue for us in the next 10 years will be how to integrate it. One of the things we have been having a lot of conversation about is that not every person who is dying needs a tertiary care model, or needs the full, hospice palliative care experience. People have died in this country and have not needed it. If you are dying of dementia and old age, you may not need that.

We need to find the best program at the right level and invest in primary health care. We may not need the tertiary care. We need to think about this model that we are calling the palliative approach. That means the tertiary model where necessary, a secondary model, which is a consult type of thing, and then primary health care. Investing in our primary health care is a big deal for us.

This is trying to figure out how to integrate between settings in the hospice palliative care, end-of-life experience, but also to incorporate that into our health care system. We have been sort of bandaged on province by province. We need to really look at that.

In the last federal budget we got a small amount of money that we have not started working with yet, it is just going to Treasury Board, it is $3 million. It is to actually look at how we integrate hospice palliative care into the health care system across all these domains. It is just a little bit of money to start the dialogue, but I think it is in the right direction for us to do that. All of our members here will be engaged in that, and we are quite excited about that. The next 10-year plan is about integration, integration, integration.

Ms. Henningsen: Building on that integration, what we experienced from the 10-year plan is the integration and understanding of home care and acute care. What needs to go forward is a focus on the chronic care and services, to be able to continue that integration of home care and acute care. We also need to target ALCs with numbers, strategies and sharing.

Lastly, one of the biggest challenges in home care is when you talk about accountability; we have a hard time measuring anything. Did you notice every time I said a number it was an estimate? We do not have the systems there. We need the systems and the knowledge to be able to measure so that we can be accountable.

Mr. Demers: Going into the next health accord, the key points we would focus on is to look for best practices and share them and remain flexible; do not necessarily be prescriptive to those providing services. There should be common principles that should be well-known and you should be held accountable to them. You have provincial governments that can barely afford the increasing costs coming for health care. There is an appetite for best practices and to learn from each other. That is what we can do as a country; we can share those amongst each other.

Look for information, but let us also ensure that we do not leave this to governments to talk about best practices because they will too often fall to, "How do we do cost containment?" You have to find a way to include the voices of patients and those people who, at the end of the day, are the consumers of our health care system.

To repeat, best practices and flexibility in their application and ensure that you are hearing the voices of the people who, at the end of the day, are those we are trying to help.

Ms. Fralick: I have a paper from CHA that I will send to you that outlines the exact answer to your question in terms of where we are right now.

For the context of the meeting, there are six important items: funding, including incentives, public-private and getting the funding model right; health human resources, coordination across the country, the right mix and scope; pharmacare, catastrophic; wellness, look at the Naylor report; continuing care, which we have been talking about; and the sixth item is leadership, be it political, the boards of directors, the governance side and the executive.

I would like to reassure that many of us are trying to come up with succinct advice to the bodies that are addressing this question. I have been working since January 2011, almost a year now, and I have drawn together a group of people that intersect with all of the different groups out there. I was trying to make a quick list as we were we speaking: the Canadian Patient Safety Institute, the Health Council of Canada, the Canadian Health Leadership Network, the health sciences centres, the Association of Canadian Academic Healthcare Organizations, the Canadian College of Health Leaders, the Canadian Medical Association, the Canadian Nurses Association, the Canadian Public Health Association, the Canadian Agency for Drugs and Technologies in Health and Accreditation Canada.

We are all meeting on a regular basis to try to come up with our take on what the system needs to do next. We look forward to sharing that with you and others when it is ready.

Senator Eggleton: I want to focus on the informal caregiver and the supports for those people who are family or friends, people who are attempting to deal with their illness at home. It is logical we should want to get more people into their homes because the spread and the costs are enormous. As Ms. Henningsen pointed out, one set of figures indicates $842 for a hospital bed, $126 for long-term care and $42 for home care. As we found out in other surveys, most people want to be cared for at home, yet another statistic in your documents indicates that 75 per cent of them end up dying in hospitals or long-term care facilities, which is not in accordance with their wishes.

One thing I have learned today that perhaps feeds into that is this unfortunate situation that you have to go to the hospital to get the drugs you need; you cannot always get them at home because they do not qualify under the system. Something must be done about that because it is counterproductive to what I think the provinces and the health care system want to accomplish.

With respect to the informal caregiver, are we providing sufficient support for those people? There are federal programs and tax incentives. There is the Family Caregiver Tax Credit, which was implemented in the federal budget this year. How much of a difference are they making, or are they just scratching the surface?

There is also a compassionate care benefit that goes with Employment Insurance. Ms. Baxter, you commented in your document of how you thought it should be improved. Right now, it will pay for 58 per cent of the caregiver's salary, but we are talking about a maximum of only six weeks. Also, you have to go through the hurdles of getting physician and employer statements and you have to certify the person will die within six months, those kinds of things. There are a lot of hurdles there.

You suggest some changes to it. Have you done any costing or savings? Obviously, more home care means more savings to the system. Have you done anything on that? If anyone has any comments to make on that particular program or the federal tax credits, please go ahead.

There is also the question of labour legislation and how it relates to people taking time off work that might lose their jobs. Talking about best practices, are there any best practices amongst the jurisdictions and provinces in the country that seem to meet that need fairly well that we might try to see spread to others?

The Chair: These are important questions, and they will probably cover a number of issues. If you could highlight an important answer to Senator Eggleton's questions, and then if there are additional issues, you can follow up with additional material. I would like to give everyone a chance on this, starting with Ms. Baxter.

Ms. Baxter: I will talk about caregiving at the end of life and know that my colleagues have done a lot of work around caregiving issues broader than that.

Canadian families do not all look the same, and the needs of the patient are not the same either; it depends on what someone is dying of and where they are dying. All those things need to be factored in. There is not one thing that the government and society needs to do to support family caregivers.

If you look at the Blueprint for Action, we provide a number of things. In my speaking notes, I highlighted the CCB, the compassionate care benefit. We can do a better job with it. It has been underprescribed for a number of reasons, first that it is poorly marketed but, second, it is only for six weeks. We hear from families who say, "Because it was only six weeks, I waited and waited" and then, lo and behold, the family member passed away.

The draw in our society for people leaving the workforce to care for dying loved ones is profound. We have not measured all of that yet. We need to think about that. The investment that Canadian families willingly take on to care for their dying loved ones, they want to do this, but we need to give them some support in doing so. There is not one plan. I look at us being creative. I know that the $500 tax benefit is a good start, and I presented to the Finance Committee yesterday in Montreal saying the same thing. With some of these things, we are going in the right direction.

To give you an example, a company that has done more than anyone else is GlaxoSmithKline out of Toronto. Two years before the federal plan, in 2002, they instituted their own compassionate care benefit for their employees and gave them 13 weeks off work with full pay. They have had 200 employees take advantage of the plan; it is marvellous. They put that on top of the government plan. I think there are some best practices out there, and we need to think about them. It did not cost what you think it would have cost. It was really great.

You talked about labour and regulatory aspects. When the compassionate care benefit was introduced in 2004, every province but Alberta changed their labour codes to allow for job security for eight weeks. Here we are talking about GSK and other companies and asking them to do more, but their labour codes do not allow for them to save their jobs over eight weeks. In Alberta, they never did change their labour code, so there is no job security. We really need to think about those things when we go forward and increase the amount of time of the compassionate care benefit. There is not one cookie-cutter approach; we will need to do a few things.

Ms. Henningsen: The impetus of why we need to do this is if all family caregivers 45 years of age and older looking after individuals over the age of 65 were to stop caregiving today, it would cost our system $25 billion to replace them with actual health care workers. Therefore, they provide $25 billion into the system.

Ms. Baxter suggested we look at a broad plan. I will give you five ideas that have been bantered around: safeguarding the health and wellness of caregivers; minimizing excessive financial burden with compassionate care benefits and other tax incentives; having access to user-friendly information, as that is what caregivers need; flexible work environments; and research to ensure the first four ideas are effective. That is what caregivers told us they want.

Mr. Demers: Knowing your instructions, I will not reiterate the points already made except to say this one thing: In the last federal election, every political party had something for caregivers. We should be congratulated for putting this issue front and centre. These solutions will be complex, but I want to address one issue about the compassionate care benefit. If you have a dying child and you can only get six weeks off work to take care of that dying child, that is not only not compassionate, it just does not work. As a parent, you have to be present to provide the medical authorities needed to take action. You are actually forcing people to leave work, whether or not they want to. What do I do? Do I not go with my child to the hospital? There must be solutions tailored to the exact needs or situations of the patients and their families.

I want to point out one thing in particular. We need to look at the important role that parents play with dying children. As a first step, that is a great place to start. If we want to signal something as a society, why not let parents take the time off work they need with the protection they need to be there with their children?

Ms. Fralick: The pressure is on to say something different, so I will speak to tax credits, which you mentioned. This concerns us deeply as being the default position on many cases; let us throw out a tax credit. It looks like we are doing something and, frankly, for those who can take advantage, it is something. However, the people we are talking about do not have the ability to take advantage of tax credits.

There is something going on in Ontario right now — I apologize as I do not have all the details — but I believe there is up to a $2,000 tax credit to retrofit your home in order to be more safe. That is a great thing; we want that. However, you have to spend $15,000 to take advantage of that, and how many of the folks we are talking about have $15,000 to do that? I would put forward a serious caution around tax credits and to get out of that mind set as a good default.

Senator Dyck: My questions were pretty well related to what Senator Eggleton asked. I was wondering about family caregivers. You mentioned the huge $25-billion benefit. Is there any kind of integration between the benefits to family caregivers who stay home for someone who is dying of cancer versus someone who may be frail and there is no specific expected date of death or someone who has Alzheimer's disease? They likely require daily care, yet we do not have a specific prognosis as to how long the person may live. Can those types of family members get the same kind of benefits?

Ms. Baxter: With regard to dementia and death, it usually occurs over four, six or eight years. Those family members really do not qualify for the compassionate care benefit because it must be for the last six months of life. You will find little uptake for family members caring for someone with dementia, which means they have to look at a different care situation for their loved one. Often it is too much to do home care and people have to look into long-term care facilities.

My view on the compassionate care benefit, as it is set out today, is that it is set up for an acute death situation; someone will die in the next six months and they need that care. It is a good question as to how we go about it for the longer term. The stress on families can be quite high, and we have not taken that into consideration.

Ms. Henningsen: You have provided three different examples where there are very different stresses on the caregiver. From a home care point of view, we would say if you are a caregiver of an individual dying of cancer, you tend to get quite a lot of support. It is a good wraparound type of support with information, education and respite care.

If you are a caregiver looking after a frail elderly person, more often than not you are a frail elderly person yourself. More often than not, when we go into a home care situation, we do not know who the client is and who the caregiver is because they are both 95 years old and they are looking after each other. That in itself is a stressful situation, and they do not receive those wraparound supports.

With Alzheimer's or dementia, that is a unique challenge because there is a focus on respite care and giving the caregiver a break from the emotional aspect. That is very different. Once again, we are probably failing in supporting caregivers for people with Alzheimer's and dementia.

Mr. Demers: When coming up with solutions, I encourage you to remember flexibility. Often what happens with chronic diseases, you need some time off, but it is in snippets of time. Someone may be good, then they have chemotherapy and need six weeks of support, and then they are good for another six months.

Whatever solution comes up — we obviously think there should be one — let us make sure it is flexible. People want to work, but they also want to take care of family members. Let us make sure they have an instrument that is flexible enough for them to do both.

[Translation]

Senator Champagne: Ms. Fralick, the first topic you mentioned, which you told us is the most important, is having access to good care. Access to family doctors today is appalling, in Quebec at any rate. We know why: each year, for a period of five or six years, the government reduced the number of students accepted into medical schools. So those people did not graduate and are no longer available. We also make life extremely difficult for GOFMS, the graduates of foreign medical schools, before they can get certified.

Mr. Demers, you mentioned access to medication. Yes, everyone was upset when they learned that there are eight cancer drugs that Quebec has refused to fund. The other problem is drugs that suddenly become unavailable. Hospitals and pharmacies just cannot get them anymore. The isotopes used in nuclear medicine were one example. When a drug is approved by our department, should there not be a clause attached to the approval of the drug that requires the laboratory to make sure that it is available?

I have something else to talk about right after this, but can I ask you what you suggest we do to make sure that drugs are available?

[English]

Mr. Demers: On the availability of drugs once they have been approved — I will go back and my policy people will correct me if I am wrong — but I think, in general, once it has been approved, the industry is good about planning ahead to ensure it is available.

The issues we run into, and we ran into this recently, is when there is a technological or a regulatory issue that result in those drugs not being available. We are working right now with the pharmacists, et cetera, to implement an early warning system so that if there is a hiccup in supply, doctors in institutions are aware of that and can plan and prioritize people.

If we look back at isotopes, it was a terrible situation, but we have to give strong congratulations to the health care sector for coming together and determining how to prioritize who should get it and ensure the supply is managed and shared across the provinces as best as possible.

I will look into whether or not there should be a clause requiring that if once it is approved, it should be available. Sometimes the unforeseen happens. In those cases, let us get an early warning system in place to ensure we have the measures in order to share available medicines with the people that need it most across provinces. That is part of the system that we need to continue to work on.

[Translation]

Ms. Fralick: If I can make an observation and add a comment about human resources in the area of health.

[English]

One of the big problems that contributes to the question you have raised is that lack of integration. We have a pan-Canadian health/human resource strategy in this country, and there is a federal-provincial-territorial committee that oversees this. However, it is insufficient, despite the good work that they do.

People are not widgets; people are moving in every direction. Until we can better collaborate on a pan-Canadian level on our human resources to efficiently look at the right mix and scope and make sure that we contain costs plus give the best possible provider services and health outcomes right across the country, we will have problems.

You also raised the issue of internationally trained. There was a specific question attached to that. I will not attempt to answer it.

Senator Champagne: I put it on the table so that you may want to answer it.

Ms. Fralick: Of course, it still speaks for this need for an integrated approach to health human resources, at which we have not been successful. People go across borders; we cannot contain our view to one jurisdiction alone.

The balance with our internationally educated is maintaining standards for delivery of services. We cannot ever step outside that system of standardization, yet there are things that can be done to assist the internationally educated, all health professionals, not just physicians, to integrate. That is another discussion, so I will not go into it, but I acknowledge it as part of the broader health care issue.

[Translation]

Senator Champagne: The other point that I want to touch on is this: a very sick patient is in hospital with an immune system that makes the case even more difficult. After a short time, he is ambulatory and is sent home with a catheter and a 42-day supply of vancomycin IV. The catheter gets blocked and so on, but he is no longer in hospital, where the vancomycin was paid for at $200 a dose. At home, the patient has to fend for himself and, if he has no insurance, he is in trouble. But would he not be sicker if he got one of those hospital-acquired infections? It may not always be C. difficile; it could be MSRA. Whatever, we do not want it to happen again.

[English]

The Chair: Ms. Fralick, would you like to respond? Others can respond subsequently, if you think about this one. It is a complex issue, and perhaps you can follow up with more thoughts.

Ms. Fralick: We were the Canadian hospital association for 75 or 65 of our 80 years, so it is an issue that we deal with even now.

I think everyone is very aware of this question. I do not have any specific answers to give you. They range from the most simplistic of hand washing, and we still know from our research that this is not happening effectively.

Part of that problem is infrastructure. We have not as a country invested in hospital infrastructure, since we are talking about acute care settings, since the late 1960s. Admittedly, we are moving away from acute care centres into community and home care, but we still need our hospitals. You do not want to go to a hospital to get sick, but we need them.

Infrastructure is a huge issue for this country. If we still acknowledge we need hospitals, we need to invest some funds in those from a safety and health standard.

[Translation]

Senator Champagne: Patients have to be made ambulatory as quickly as possible so that they can get home and make their own decisions. That is all well and good, but when you are discharged from hospital like that, some really important care is needed with the catheter. Vancomycin comes to mind because I am very familiar with the problem. But in a family situation, it can cause problems.

Senator Verner: You are certainly very good ambassadors. I would like to look at a question in perhaps a different way. You are right; it is true that the aging population can sometimes be in good health. But is it not the case that, in terms of human resources, the people who are often called on first are family members? For any number of reasons, and you can look at the question from a number of angles — the work environment and tax credits and what have you — at the end of the day, the human resources those people are going to need will be health professionals.

I would like to know whether, in your opinion, we are heading for a desperate shortage of human resources in that area. Are there already disparities, outside the big cities, I would assume, more than in them? How do you see that?

[English]

The Chair: Ms. Henningsen, would you like to start?

Ms. Henningsen: Human resources is a major challenge; it is getting bigger. When someone makes a decision to hire 3,000 nurses for hospitals, they are getting nurses out of the home care system. What happens is that because we keep looking at systems in silos, we keep taking from different sectors. That has a huge negative impact on us.

One of the challenges is with the early discharge of patients from the hospital. They are more complex. The care is more complex. We need to train our home support workers and our nurses to a higher level. There are many initiatives happening now to try to get some national training standards, particularly in the area of home support workers.

We have also been looking at the use of technology, particularly to help in rural areas. One of the biggest challenges is wound management in the home, and there is some neat technology out there where you do not need the actual specialist in the home. The nurse goes in, takes a photo, the specialist immediately sees that photo and makes a judgment, and that is how the care plan moves forward. There is some low-cost impact technology that will help manage the human resource challenge.

Ms. Baxter: With regard to end-of-life care, we are quite aware that we do not need to have a tertiary care model where we have the specialist and interdisciplinary team and what not. We are having conversations about investing in primary health care and community nursing to be able to do more; we have telehealth, et cetera. We need to invest in it. There have been some investments and movement on that angle, though.

One of the issues we have is the opposite. When someone is getting close to the end of life and is at home and the family hits a snag, it is usually three o'clock in the morning and it is dark and scary outside. The point of reference then is an emergency room placement. People die on gurneys in emergency wards. That is a failure in our system.

If the placement into acute care is planned, that is fine; that may be the best care plan. However, a placement in the middle of the night — and it happens all the time. We need to find the ways to support and plan and some of the things that fall between the cracks, which is this ongoing assessment and looking at the patient, family and the caregiving needs. We tend not to do that, and then all of a sudden we are into this situation where someone is placed into acute care, which is the most expensive part of the home care system. At end-of-life care, we need to look at how we invest in caregiving and how we invest in primary health care so that they are seeing the patient more often than, say, the palliative care physician who might see them only every few weeks. How do we support the family? We need to look at it as a global piece; it is not just the physician or nurse.

Mr. Demers: One of the critical pieces that is missing, and my colleagues have referred to it, is information. We are entering uncharted waters, and in many cases, we do not have the information or we do not share it with others in similar situations and develop best practices.

If I look back at the government support for the national cancer strategy, one of its great successes is it is providing better information about the system and how to change the system. We have to look across the health care system, particularly in home care, and ask whether we have the information we need to make informed decisions. Are we sharing that with the people involved in those decisions? Before we are prescriptive, we have the information to make smart decisions.

Senator Braley: Pretty well all my questions have been answered, and Senator Eggleton asked the most important one. However, there are two things. You say the silos, namely, the family doctors, the specialists and the hospitals, are keeping the patients. Is there an education program happening to move them out to family and day care internally?

Second, when I had to look after my mother, there was no place to go. I had to bash into various doctors' offices and bash into various places to try to educate myself to try to deal with her situation. There is an education program needed on both sides of the line, and I do not understand it clearly. It has been a very good discussion and meeting, and a lot of questions I have had have been answered. However, on that one I think there is a hole in the system.

Ms. Fralick: On the educational program, there is not one per se, but the language around acknowledging this need is strong. We have one hospital association left in this country in Ontario, OHA. Their CEO will constantly talk about how the best thing hospitals can do for themselves is keep people out of hospitals through prevention promotion or getting them appropriately to the next place they should be. Jack Kitts, who runs the Ottawa Hospital, and any of the CEOs who run hospitals understand one hundred per cent that the best thing they can do for Canadians and for their institutions is keep people out of them. That is a lot of the language.

It is not an unknown piece. Right now, it is how do we do it. Where are the supports for caregivers? Where are the facilities that we get people to? Where is the information for people like yourself who know how to navigate these uncharted waters? Those are the pieces we have been talking about.

Ms. Baxter: Regarding navigators, in the 2004 health accord, we talked about case managers, which is an important part. A lot of areas in palliative care started to look at case managers, but we also look at the flip side in which the case manager manages the patient in their care but the other side is navigating the system. It is an important that we invest. It is not a high-cost thing.

You had a single point of assessment when you looked after your mom. You could phone this one number and they would figure it out with you, where to refer you. We do not do that very well. When my grandmother had to go into long-term care here in Ottawa, we did 11 phone calls and six site visits. Some things can be helped by having navigation. That is something for us to think about in the next accord.

Ms. Henningsen: You hit the nail on the head. For individual Canadians, the first point of contact is the family physician. That is the comfort point, and rightly so. In a number of different provinces, what we have done with home care is link the home care programs with the family physicians through the case management function that was mentioned. It was fascinating doing this program in that, first, family physicians did not understand the home care program probably because they were not directly involved. When they got to know the case manager, they saw all the options open for their patients and the patient's family caregivers. It worked so well that we had family physicians calling us wanting a case manager. We have seen it roll across the country, particularly in Ontario, and, as I mentioned earlier, in B.C. There has to be that linkage because we know the family physician is the first point of contact for the majority of Canadians, and we have to have that integration with the home and community care with family care physicians.

Mr. Demers: One of the issues is how to do it. We need more information, but one of the hows is to work with the charities. This year we passed the one-millionth mark as far as inquiries with the Cancer Society for people asking for help as to how to navigate the system. For example, if you have a form of cancer, we will put you in touch with someone who is six to 10 months ahead of you in a similar situation, so they can tell you about what you can expect and the services you might avail yourself of. Get the information but then work with the charities and community-based groups. We want to help provide the information so patients and families are making informed decisions, but the first step is to make sure we have the information. Often people say, "Put the information online." I can say most people want to talk to a human being when they are dealing with something like their own illness or the illness of someone in their family. We have the volunteers, so get us the information, and we will work with you to make sure the people have it.

Senator Demers: In Ms. Fralick’s memo, there were six areas identified by the CHA board of governors. It is says that the health of the nation would benefit greatly. Funding is one, health, human resources are two, and leadership is six. They are all very important.

If you do not have any leader, you do not have anything going. I love your passion. You should be a hockey player.

You say, Mr. Demers, you say you have no information. That is lack of leadership. I am not accusing anybody of not being leaders because you came up with a great presentation. Leaders have to give direction, have to have a game plan. We had doctors here the other day who were extremely well prepared and honest, and they talked about leadership. You could have the best team — I am not talking about your team — and people working, but if there is no direction, no game plan and no given responsibility, we will be back here next year and we will talk about the same thing. We all have the desire. I am sure you have a great team but up top, if they do not plan, give information, give responsibility — because false leaders want to take every responsibility under their care because they are concerned about good people doing a better job than they do.

Real leadership comes from designated different people knowing what other people can do for the team. If you do not get information, people in a hospital that are lying down there, who should not be there, it is costing millions and maybe billions, eventually. Who tells them in a very respectful way, "Get out of here. You are costing us money"? Leadership has to take decisions. Leadership cannot be afraid to hurt people at times: "Oh, I do not want to hurt Susan because she is my friend." I do not care, Susan. If you are not doing the right thing, I will tell you.

I appreciate what you are saying here, and all the senators had great questions. You can see they are concerned, along with the chair, to make sure this works and eventually gets better, but if you do not get your leadership, there is nothing we can do about it.

The Chair: Stickhandle this one back, Ms. Henningsen.

Ms. Henningsen: It is so right, and we have seen so many examples things happening when you have an innovative leader in a regional health authority or in a community access centre. One of the things I will tell you that is a glimmer of hope for us is coming out of the 10-year health plan. With the focus on acute care home care services, a lot of home care leaders were required to go knock on the door and start to work with acute care hospital workers. In the past, we never talked and that is why the individual was in the hospital. There is a lot of understanding and starting to realize we both had the same problem and working together we had the solution. I feel positive about leadership. Are we there to really make these big kinds of changes we are talking about? I would challenge us to say there is a lot of work to be done.

Ms. Fralick: First, I want to say I would not want there to be any misunderstanding that by putting the six items and having leadership the last one, they are not rank ordered, purposely, but one might look at leadership as being the foundation for everything else, and that may be why it is down there. I absolutely agree and have two comments on it.

We do not invest in our health leaders. I do not have the data in front of me, but if you look at what the private sector invests in building their leadership versus what we do with the health sector, it is embarrassing. We stick people into positions, such as physicians going into physician-in-chief positions, and we think that, just because they are physician, they know how to be leaders. They themselves will acknowledge this is not necessarily the case, although they might make great leaders. The fact is that physicians are not generally employees of the health system. They are independent contractors. How do we engage them in the system and help them take advantage of the ascribed leadership role, because that is the first stop and the centre? How do we enhance the leadership? There is an initiative called the Canadian Health Leadership Network that is devoted to cultivating leadership within the health system. I can show more information on that if you are interested.

Ms. Baxter: In regard to the end-of-life piece of the health care sphere, we have 35 national groups that are involved in the Quality End-of-Life Care Coalition, and we came together and clearly have a 10-year plan and targets and requests and whatnot. It speaks to the health professional groups and the disease groups and the home care groups and the faith-based groups. There are a number of different areas.

We work nationally, and we have been encouraging provinces to create these voices where they can have patient groups and whatnot so we can have a unified voice, going to talk to business and government and NGOs. There is now a quality end-of-life coalition in B.C., Alberta, Nova Scotia and Ontario, and they are getting up and running and they are getting excited. This whole area of the health care debate is personal to many people and is getting a little bit more organized. Hopefully we will have some great leadership coming out of it. We are optimistic. It is a really good point, because there is so much to do.

Mr. Demers: I have two quick points on leadership. First of all, challenge us. On the issue of caregiver, over the last three years, we all came around the table and said we all want different things. The government said to us, "Please come to with us with something that everybody can agree on," and we did. I think that caused a great deal of effectiveness into the system. Challenge all of us to provide leadership in our communities and to provide concrete and hopefully widely accepted solutions to what is going happen. We have to provide that leadership. We hope you give us the opportunity. We need to know where to go in order to provide that leadership.

Second, I will go back to the role of federal government, particularly on catastrophic drugs. There is a reluctance to come to the table I think in part because there is a fear of having to pay the bill. If they do not come to the table, it is patients who pay the bill. Someone will pay those costs. It is critically important that we take the failure of the first health accord to move forward on catastrophic drugs and have everyone come around the table, not because anyone should be left stuck with the bill but because it takes the leader to say we need to have this dialogue and come up with solutions that meet everybody's needs. That is the type of leadership we are hoping from the federal government.

The Chair: Thank you, on the important aspect of a question that has come up during the course of this meeting. I would like to come back and try to focus in on this aspect: We are really dealing overall with home care, but that is tied into care in whatever facility is required to deliver the care at the time of life we are talking about today. You have all talked about the need for a timely, coordinated and effective care system in this area. That does not mean it should not be in every other area, but we are talking about this area specifically.

During the course of your answers, you have referred to issues that I will lump under the term "the silo effect." I will ask you to think about this further after you leave here today and to give us additional further input on your observations here with regard to identifying some of those silos a little more clearly for us. If you are able to, be as frank as you can about those, and indicate the kinds of things that you see that block the dialogue among the caregivers that are required to come together to deliver this home care.

You have given examples of where, if this were to happen, substantial benefit would occur, and almost certainly savings to the overall system. When you are improving the health and happiness of the individual and reducing money at the same time, that is a good thing, obviously; we have heard this in a number of categories, and we want those examples.

In the end, this ties in to the topic that has come up again in several of the questions, and that is the leadership issue. That means different things to different people in different circumstances, but we have a very complex system here. We talk about federal government leadership versus provincial government leadership, and that is at one level. They can deal with things on a large kind of scale. You have identified some of the ways they can talk together about providing leadership in critical areas. However, down at the level of care delivery, we have additional fragmentation. We have a big part of the delivery system that does not report to any of the same people that many of you do and the people you work with, and that is the physicians in terms of who provides the leadership. Senator Demers, Senator Braley and others are used to taking the leadership and making it happen, but we hear that there are certain sectors that do not answer to anyone directly within that system. That does not mean they should not.

If we are going to bring about an effective system and be able to provide recommendations forward, we need you. We had very frank input at our last session. We were pleased with the degree of frankness that the witness had put forward. You have been very forthcoming with regard to the issues you face. Be frank with us about the barriers you see that are probably historical, probably artificial, but that interfere with the way you move forward.

I want to come to one specific example that occurred as part of I believe your answer, Ms. Henningsen, in terms of in-home care delivery. I have been following closely these new developments with regard to having that video direct link to a centre that is set up deliberately to be able to interface with caregivers on site with individual patients in the home. I think that this is an issue, and we talked about this with regard to the answer to Senator Braley's question about getting information on how the family responds in general ways where they can help and how they can help identify the kind of response that is needed. Those two are linked in terms of providing information just in time. Business today operates on a just-in-time delivery. We need to coordinate the health care delivery so it is just in time but, in order for it to be just in time, someone has to know what is needed. You all mentioned the savings that could occur and the psychological benefit that occurs to patients in their home, especially in the categories you are talking about.

If you can incorporate that concept of technology, helping the on-site care deliverer interface with a backup system that delivers the information needed right now, those are the kinds of examples you could add to the issues I have raised.

I would now like to turn to Senator Eggleton, who said he had one quick question. We might be able to get that in if it is still timely.

Senator Eggleton: We have been talking about home care and a few other related issues today in the context of what is happening in Canada, but what can we learn from what is happening in other parts of the world? Are there one or two good international examples that we should perhaps follow? That is a kind of question that maybe gets a one- or two-word answer. Are there any particular countries we should look at that have home care down pat or pretty close to it or are much ahead of us?

Ms. Fralick: I would put a vote in for Australia. We considered that in great depth when coming up with our own policy discussions. We have an in-depth brief that details a lot of what is happening in Australia, and I can make that available to you.

Ms. Henningsen: I would suggest that it is a potentially slippery slope to compare to international models, because often the context is very different. The flip side is that a lot of provincial home care programs are starting to use a standard assessment of clients, and then they assess what care they need. It is called an interRAI assessment, and the interRAI assessment is worldwide.

There is actually data that can compare the complexity and care needs of a Canadian in B.C. versus someone in Spain and what the systems develop and how the systems support it. There is the ability to be able to compare. We will pick up your challenge and try to find some models, but it is challenging because a lot of the context is very different.

The Chair: I will now come to wrap up the session. If you have those best practices examples, regardless of where they occurred, if you could incorporate that into your additional responses to us, we would find that most helpful.

At this stage, it is obvious that the subject that you have helped inform us on today is on the minds of all the senators. With some clear exceptions, we fall into the category Ms. Fralick mentioned at the opening of her comments. We are not disinterested parties for a number of reasons in this circumstance. Nevertheless, it is critical to Canadians. You have touched on many important aspects of it. If you can help us get an integrated, thoughtful observation out of this in the manner that I reviewed a moment ago, we would be most grateful.

If you also think of additional aspects of the issue that you want to provide to us subsequently, we would welcome that. I would hope that if we have questions that occur to us later, that we could put them to you and you would be willing to respond to us.

With that, I would like to thank my colleagues for being perhaps not as efficient with their preambles this time as yesterday, but thank you for allowing us to get through all of our senators for questions and bringing forward issues that are absolutely essential for us to learn about. Thank you, witnesses, for the wonderful way you responded to us today.

With that, I declare this meeting adjourned.

(The committee adjourned.)