Proceedings of the Special Senate Committee on Aging
Issue 5 - Evidence, April 7, 2008
OTTAWA, Monday, April 7, 2008
The Special Senate Committee on Aging met this day at 12:34 p.m. to examine and report upon the implications of an aging society in Canada.
Senator Sharon Carstairs (Chair) in the chair.
[English]
The Chair: Good afternoon and welcome to the Special Senate Committee on Aging. Today's meeting will focus on the options raised in Chapter 4 and Chapter 5 of the committee's Second Interim Report entitled, Issues and Options for an Aging Population, which was tabled in the Senate on March 11, 2008. These chapters list options to facilitate healthy aging and aging in the place of choice.
To help us to understand the issues around these topics, we have before us, from the University of Montreal, Dr. François Béland; from the Health Council of Canada, Mr. Donald Juzwishin; from the Canadian Hospice Palliative Care Association, Ms. Sharon Baxter; from the Canadian Institutes of Health Research, Ms. Anne Martin-Matthews; and from the Alzheimer Society of Canada, Ms. Patricia Wilkinson and Ms. Betty Brousse. Appearing by videoconference is Mr. Marcus Hollander. Welcome to the Senate of Canada.
Marcus J. Hollander, President, Hollander Analytical Services Ltd., as an individual: Thank you for the opportunity to appear before the Special Senate Committee on Aging to comment on the committee's Second Interim Report. In my view, this is an excellent report. I have a few comments to make that, hopefully, will be of interest to the committee.
The committee might wish to expand recommendation 68 with regard to integrated care in the Social Union Framework to incorporate a broader domain of activities, including social care, respite care and supportive housing/ assisted living. These services would generally be included in a comprehensive model of integrated care. Alternatively, these services could be added as bullet points under the current recommendation. It could be helpful as well to add bullet points to indicate clearly that integrated care includes case management, home and community services, and residential care services. The committee might also wish to consider adding the comment that an integrated system, with a full range of services, allows for cost-effective trade-offs between lower-cost home and community care and residential care, while maintaining the same, or better, quality of care. Certainly, I recognize that that point has been made in the report in some other sections.
The task of developing province-wide integrated systems of care might seem daunting; however, it has been done before in Canada. The British Columbia continuing care system in the early 1990s was a well-developed integrated system. Other provinces also had such systems prior to regionalization. In fact, the four western provinces and Prince Edward Island had systems that had many commonalities and were relatively similar. Senator Carstairs might remember that the late Betty Havens was the assistant deputy minister responsible for continuing care in Manitoba in 1992-93. Unfortunately, the success stories of the early 1990s provincial systems seem to have been forgotten and have not been well documented. Thus, I asked a colleague, Paul Pallan, Executive Director, Continuing Care Division of the B.C. Ministry of Health, in the early 1990s, to comment on that system. We are fortunate to have Mr. Pallan working with us at this time. After a distinguished public service career, he retired recently as Children's Commissioner at the deputy minister rank. I am not trying to single out British Columbia because a number of other provinces have excellent systems as well.
The following is an excerpt from a note that Mr. Pallan sent me:
I am pleased to confirm that British Columbia's Continuing Care Program of the early 1990s was highly regarded not only in Canada but also in the U.S.A. and internationally. As you will recall, I was the Executive Director of the program in the late 1980s and early 1990s. In this capacity, I was invited by representatives of other jurisdictions to present on the organization and delivery of continuing care services in British Columbia and identify possible lessons that might be applied in these other jurisdictions. I was invited to give such a presentation in the U.S. in Washington, D.C. to a committee that was examining the possibility of developing a more publicly funded system in the United States. I also made similar presentations in Columbus, Ohio and Washington State. At an international level, B.C. was frequently visited by representatives from other countries to learn more about our continuing care system. One of these delegations was from Italy as this country was beginning to realize the impact of the aging population in their country. After listening to our presentations, I was invited to present an overview of the B.C. system on three different occasions in Italy in 1991 and 1992. I believe that while the system was not perfect, it was recognized by leading authorities as being a leader, particularly from the standpoint of assessment, coordination and responding to the unique needs of each client. While, of course, any new system of care needs to consider its own unique culture, history and circumstances, there is no doubt that many lessons may still be drawn from B.C.'s experience with continuing care in the early 1990s.
The main point is that comprehensive, integrated provincial systems of care, whether run directly or through health regions, can be and have been developed previously in Canada. Certainly it is a challenge, but that challenge has been met previously.
It is important to note that when we had such systems, they constituted the third largest component of our health care system in public expenditures. There is little data on this topic and we do not collect it in this manner now.
I have data from the B.C. Ministry of Finance for 1992-93. This was the last year for which British Columbia financial data were presented for continuing care per se. These are budget numbers: continuing care was $1.05 million which included $400,000 for chronic care; hospital care was $2.29 million, excluding the $400,000 for chronic care; medical services were $1.5 million; drugs were $0.33 million; and all other services, including public health and mental health, were $0.65 million; that totals $5.83 million.
Thus, care of the elderly and people with disabilities constitutes a major component of our publicly-funded health care system. The size and scope of care services does not currently appear to be fully recognized or documented and, therefore, integrated care delivery systems for the elderly are deserving of a renewed policy focus at the national level.
Patricia Wilkinson, Manager, Media and Government Relations, Alzheimer Society of Canada: In May 2007, we spoke to you about the devastating effects of dementia on an aging Canadian population. Today, I am pleased to report that many of our concerns and issues regarding dementia and dementia care have been recognized in your latest report. I bring congratulations for the outstanding work you have completed to date on behalf of all aging Canadians.
Your interest in promoting healthy aging is of particular interest to our society. Adopting a healthy diet and exercising are excellent ways to help reduce the risk of developing dementia. For people already living with the disease, maintaining a brain-healthy lifestyle can help slow its progression.
The society is also pleased to support your recommendation for a national, comprehensive, publicly-insured prescription plan. We know that dementia researchers are on the cusp of developing the first disease modifying treatments. However, these medications are only useful to people if they are both accessible and affordable.
Treatment of any kind can only begin once the disease itself has been identified. A combination of stigma as well as a shortage of geriatric and other specialists continues to cause barriers for people seeking a diagnosis. We believe that your recommendation to support capacity-building programs for training in geriatrics, as well as developing tools for the early diagnosis of mental health conditions, would be of great help in alleviating these concerns.
As the disease itself progresses, family caregivers face an extraordinary challenge to provide the often around-the- clock care that is required. In fact, caregiver burnout and exhaustion is the leading cause of admission to facility-based care. While there is currently a mix of programs aimed at supporting family caregivers, your option of introducing a national health care program would allow for consistent and equitable access to services. This would help make home- based care an affordable and viable option for everyone.
I will turn it over to Ms. Brousse, who at 60 years of age, is a family caregiver for her husband who was diagnosed with vascular dementia in 2003.
Betty Brousse, Volunteer, Alzheimer Society of Canada: I would like to provide a personal glimpse into some of the issues of aging in place of choice. My husband and I are fortunate to have had home care support. We have attended education sessions offered by the Alzheimer Society. We made use of respite care. Fortunately, we have been financially-supported by Veterans Affairs through the Veterans Independence Program, which is a model for seniors to remain in their own homes.
We used home care initially to provide a companion for my husband to allow me to have a free afternoon each week for three hours. That allowed me to leave the home to be by myself or to have a coffee with a friend. These are things I could not do otherwise. Next, we had assistance with bathing and dressing every morning which was too physically demanding for me. Can you imagine having to bathe and dress your spouse? Without home care, I would not have been able to care for my husband at home as long as I did.
For me, the scariest part of my husband's disease was the year we waited for a diagnosis. Once a diagnosis was made, my husband and I were able to take part in a pilot program called First Link offered by the Alzheimer Society, which offered training and education concerning Alzheimer's and related dementias. Understanding the disease allowed us to face the future knowing what was in store for us.
Initially, my husband had insight into his disease and after the education sessions, he understood his prognosis. He then told me he would not want me to look after him when he could no longer care for his own personal needs. You have no idea how many times I have reminded myself of what he said in the past six months since he has been in private care.
It is through education that you come to realize that it is not uncooperative behaviour being exhibited. It is not his fault; it is the disease. It is something you must remember every moment of every day when living and caring with someone with dementia.
As caregivers of loved ones with dementia, husbands suddenly find themselves cooking, cleaning, doing laundry, shopping. Wives find themselves calling plumbers, looking after the finances and doing the driving. Simply, it is overwhelming mentally and physically. Respite allows us to recharge.
One of the most disconcerting issues for those who suffer from dementia is wandering. In this region, at the time my husband was using respite, there were only two public respite facilities that were secure. One of those could not guarantee the services in English that my husband needed. That left one facility where my husband could have respite care and he spent five weeks in respite last year over the course of the year.
There are no respite guidelines for those who use it in terms of either frequency or cost. In some cases, spouses feel they must care for their loved ones in sickness and in health; however, with guidelines for respite, some of the guilt of putting your loved one in respite may be removed.
Until you become a primary caregiver, you have no idea of the financial impact on your life. All of a sudden, you are faced with additional medical costs, costs for day programs, costs for sitters and adaptations for your home such as railings, bathtub safety bars and additional locks.
As a caregiver for someone with dementia, just continuing to manage your own home becomes overwhelming. Suddenly, there is no time to clean, to look after the yard or garden. You are doing well just to manage laundry, get to the grocery store and put food on the table.
As I mentioned, we receive support from Veterans Affairs that allows me to manage our home without undue financial hardship. The Veterans Independence Program is aimed at allowing seniors to continue to live in their own homes, and it works.
Ms. Wilkinson: The scope of your committee's perspective is impressive, but also causes concern regarding how many of your options are translated into policy and how many will necessarily be abandoned as government focuses on what is achievable. From our perspective, we see immense value in the options that promote healthy and vital aging, those that fight ageism and stigma and the ones that would help seniors and their caregivers obtain equity and access to the supports they need in pursuing healthy aging goals.
Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association: I am pleased to appear before this committee on behalf of the Canadian Hospice Palliative Care Association and thank the Special Senate Committee on Aging for inviting us back following our appearance last June. I would also like to recognize the ongoing work of Senator Carstairs and Senator Keon for bringing attention to the issues of aging in hospice palliative care in Canada.
Following the direction from the 2000 Senate report entitled Quality End-of-Life Care: The Right of Every Canadian, the Quality End-of-Life Care Coalition of Canada has established the following mission: The Quality End-of-Life Coalition of Canada believes that all Canadians have the right to die with dignity, free of pain and surrounded by a loved one in the setting of their choice.'' It is the ``setting of their'' choice where the health care system often fails us.
I appreciate the attention given to hospice palliative care in your second interim report. On page 33, you made four specific recommendations that are extremely important to us; they are timely and we support them wholeheartedly.
I will not spend a lot of time on the recommendations that you have already made because I think they are terrific and we clearly support them. In the last of the four recommendations, however, you referred to the hospice palliative care program for veterans, First Nations and Inuit, and federal inmates. Of these three groups, the veterans receive hospice palliative care services through the Department of Veterans Affairs, which is far better than the hospice palliative care services offered to other Canadians by the federal jurisdiction.
I am pleased to hear that Ms. Brousse was able to take advantage of our veterans' program. It is one of the gold standards, but we cannot lose sight of the fact that the federal government is responsible for providing care for Inuit, First Nations, inmates and others. I wanted to call to your attention the fact that for Aboriginal people, there is no allowance for hospice palliative care in the First Nation and Inuit health budget envelope.
We have a system where the model of care used by Veterans Affairs would be a marked improvement from some of the other groups. It should be considered best practice, and these other groups are not receiving the same standard of care from our federal government. I think you are right on track with the Veterans Affairs program, but we would love to see it given equitably to all people within their jurisdiction.
Why is hospice palliative care important? As I mentioned last June, in any discussion related to aging and health, you must talk about hospice palliative care. According to Statistics Canada, in the next 20 years, fully one quarter of all Canadians will be 65 years or older. Life expectancy is increasing, but it is also expected that 7 out of 10 Canadians over the age of 65 will be living with more than two chronic diseases. Today, two thirds of all cancer deaths are in people 65 years or older. This is a segment of the population that will require better quality hospice palliative care and more amounts of it.
Complicating factors with regard to the elderly include negative social and economic factors and the lack of advanced care planning. It rapidly becomes apparent that when these factors are combined with more of these chronic diseases, caring for elderly Canadians can become complex, necessitating packages of care that require partnerships and collaborations between different health care groups across many settings. We will have to do things differently.
In many cases, single elderly Canadians with no family and/or friends to care for them often end up in hospitals or in long-term care facilities. As well, many elderly with limited incomes cannot afford to pay for the extra help they need that will enable them to stay at home as long as possible, or to die at home if that is what they want. The Canadian health care system could be more innovative in providing caregiver support or respite for these Canadians.
We will have to become more creative in doing that because the fallback position when someone is at the end of life is an acute care hospital bed at close to $1,000 a day. The economics and the quality of life arguments are not there. We need to do better. Often the level of support needed is not terribly great and this can eliminate or postpone hospitalization. Our national respite program could provide some of this support.
Most literature regarding respite talks about a break for the caregiver. In fact, at the very end of life, families and friends do not necessarily always want time away, but want the ability to spend more time with their dying family member without the constant pulls of the regular duties of life. A national respite program would need to be flexible to allow for the various types of supportive measures needed during the disease trajectory. Programs such as Meals on Wheels could be considered a type of respite program, and these programs are not always terribly costly.
The Quality End-of-Life Coalition of Canada came out with Dying for Care report, which said that to do end-of-life well, we need six main components. Some of them are in your recommendations, but they are access 24/7 to hospice and palliative care professionals; home care and home support; care for the caregivers, often referred to as respite care; compassionate leave packages, a caregiver financial package; prescription medications; and non-prescribed therapies. The coalition has come up with a series of economic based recommendations around caregiver packages; I will leave copies with the committee.
Since 2004, when the health accord was signed, only five jurisdictions in Canada paid for pharmaceutical medications at home. As of yesterday, every province and territory in this country has announced they are paying for medication. We can do it; it is not as costly as we think.
I know that you will hear testimony on home care, so I will spend a little bit of time on long-term care. CHPCA has been referring lately to our long-term care settings as the next mountain to climb. Long-term care facilities in Canada are often under-resourced and have inadequately trained staff when it comes to competencies and standards in hospice palliative care. Patients residing in long-term care facilities often present with chronic, very diverse and complex needs, and people working in these facilities need training around end-of-life. Many Canadians die in these settings; in fact, 33 per cent of long-term care residents will die in any given year. However, we feel we can successfully argue that they are doing death and not necessarily doing good hospice palliative care.
It is clear the health care system can improve acute-care patient wait times by increasing the number of long-term care beds in the system, which will reduce the use of acute-care beds for long-term care patients. It speaks to having the settings of their choice, and some sort of continuity between these settings for aging Canadians, so there is choice and they get the best place for them at the best time. I also wanted to note that the Canadian Health Care Association is currently working on updating its report on long-term care in Canada.
In closing, I would like to address three further recommendations that the Canadian health care system could pay some attention to. First, I think they need to increase training, education and implementation of the national norms of practice for hospice palliative care in all settings of care, including acute care, long-term care and complex continuing care in residential hospices and home.
Second, we should be researching other types of caring communities for the aged that have implemented supportive and respite programs. I was recently in the United Kingdom, where they have care homes in which the younger seniors are helping care for the older seniors. It is quite innovative; it is handy, does not cost a lot of money and defers these older seniors from going into acute and long-term care facilities prematurely. I think we need to look at some of these models.
Third, I think we need to increase the usage and implementation of the Canadian Council on Health Services Accreditation palliative care standards in all accredited health settings — they are not there yet — so all these settings are held accountable to accredited levels of care.
Donald Juzwishin, Chief Executive Officer, Health Council of Canada: Thank you for the invitation to speak to you on behalf of the Health Council of Canada. This is our first appearance and we were asked to provide comment in respect to Chapters 4, 5 and 6.
Although the Health Council of Canada had not undertaken any specific work on the topic of healthy aging and aging in place of choice, we did find resonance with the work we did on chronic diseases within the Canadian population, which I think will help support many of the recommendations you are putting forward and identify some gaps that you may want to give some thought to.
The Health Council of Canada is the result of the 2003-04 health accords, and has the responsibility of monitoring health care renewal and reform across the country. It is within the spirit of looking for opportunities to shine a light on positive efforts taking place in the country that we are doing much of our work. We wish to encourage improved standards of the delivery of health care for the aging and quality aging in a place of choice.
The report that I referred to has been made available to you; it is entitled Why Health Care Renewal Matters: Learning from Canadians with Chronic Health Conditions. The report is supported by two supplements, one of which is a cross-sectional telephone survey of Canadians conducted in January and February 2007. The second contains data collected in 2005 by Statistics Canada, which includes information from approximately 133,000 Canadians suffering from chronic conditions.
Ms. Baxter has touched on the take-home message in the mosaic of chronic care in Canada by referring to the 7 and 10. Seventy-five per cent of seniors 65-plus reported having at least one select chronic health condition.
You must to be well off to be a diabetic. Diabetes is an exclusive club and the membership price is high. The working poor need not apply. This was feedback we received through one of our consultations in 2007.
To give you an appreciation for that plus-60 age group and the incidence of chronic diseases within that population, our report in figure 1 shows that 9 million Canadians — or one-third of youth and adults — have one of the long-term health conditions such as arthritis, diabetes, cancer and heart disease. If you focus on the left-hand side of the graph, you see that in the 60 to 79 age range, 36 per cent experience one chronic condition and 35 per cent experience two or more chronic conditions. That is a total of 71 per cent; as Ms. Baxter said: 7 and 10. The number is even higher once you are in the 80-plus range: 34 per cent have one chronic condition and 48 per cent have two or more chronic conditions; that is over 80 per cent.
We feel the characteristics of chronic diseases and their characterization in our report as similar to a tsunami that will influence our Canadian social health infrastructure and create a major challenge. Many of the people who have presented to your committee have underlined this challenge. I encourage the excellent work you are doing.
Those who experience chronic conditions experience a poorer quality of life. Half of the adults with two or more chronic conditions report moderate or severe disability in daily living. Responses that would facilitate an improvement in their quality of life because of that disability will be very important. Not surprisingly, this population group also uses a large share of the health care resources. One-third of Canadians with one or more of the seven high-impact, high-prevalence chronic conditions in our survey were found to use 67 per cent of all visits to community nurses, 51 per cent of all visits to family doctors, 55 per cent of all visits to specialists and 72 per cent of nights spent in hospitals. I am setting the stage. When I get to the recommendations that the Health Council of Canada has put in its report, you will see it is in support and response to this; it is confluent with the recommendations that you are putting forward.
It is important to stay focused on your implementation of the recommendations within the policy environments down the road because there are huge gaps within the accessibility and quality of ongoing care. Ms. Baxter mentions the necessity for Canadian Council on Health Services Accreditation (CCHSA) standards to be promulgated in hospice/palliative care. We are recommending that mandatory standards be extended to all health care services in the country. At the moment, it is voluntary accreditation.
We also call for action for patient-centred care. We want to assess how Canada is doing to ensure that all Canadians have access to needed care, patients are engaged in their care, care is coordinated and health care teams deliver integrated and comprehensive care. The latter is something that we already heard from our representative from Victoria. Also, information about health care needs to be widely available to Canadians.
What is our advice? Our advice to governments is to invest in success by ramping up initiatives proven to prevent chronic health conditions and their complications. A simple matter such as reducing the intake of salt by one less teaspoon a day would result in a 30 per cent decrease in the cases of high blood pressure, one of the most prevalent health conditions. That preventative initiative would result in 1 million fewer Canadians with this condition and direct cost savings from reduced physician visits, lab tests and medications is estimated to be over $430 million per year. Governments would need to be prepared to work in a multi-sectoral context to raise citizen awareness, work with the food processing industry and the salt producers.
Our advice to government health care policy-makers, managers and providers is to invest in proven strategies that improve the quality of care and engage people in managing their own chronic conditions. What are some of these proven strategies? We have identified and highlighted several of these in our report.
Currently, there is great inefficiency with scheduling systems; they underlie long waits for appointments for primary care providers. We can learn much from other countries, which Ms. Baxter mentioned with some examples. Self- booking of primary-care physicians or general practitioners has begun to appear in some Canadian settings but it is not common yet. People are Internet savvy and capable of using those kinds of technologies to book their own appointments. Reminders or referrals to health promotion activities and programs are another effective way of trying to avoid the onset of chronic diseases.
In our report, we identify several successful, country-wide initiatives. It is a pity they tend to be isolated within those regional settings. We would encourage their spread.
The financial barrier to care is also an issue. The access to pharmaceuticals is one that is a major concern, and it is good to see some of the progress that has been made. In our survey, we found that 10 per cent of Canadians with chronic diseases reported they did not fill a prescription or they skipped a medication due to the associated costs.
Patients with chronic conditions generally feel primary health care providers communicate well with them. However, 60 per cent to 90 per cent felt their values and their health care providers did not necessarily take traditions into account. In some cases — 34 per cent — people did not feel their goals were taken into account and, in 50 per cent of cases, nor were the patients actually involved in the care decisions recommended for their compliance. We feel there is much more that can be done to improve the delivery of care that would involve Canadians suffering from chronic diseases in managing their own care.
Finally, without proper data, those responsible for health care renewal — political leaders like you, health care policy-makers, managers and providers — are working in the dark. Canada lags way behind in the implementation of the Electronic Health Record, and Canadians are unaware of the difficult decisions that need to be made. Without data and information, it is very difficult for that to be done.
We would encourage integrated health information; surveillance on information tracking strategies and integrating that information about risks to poor health; the environment Canadians live in; the availability to get the care they need; the quality care they receive; and, finally, the results of that care. Where is it working well? Where is it not working?
Variation across the country is fairly significant. You serve as a pan-Canadian voice. This is an opportunity to be looking at standardizing high quality of care in respect to chronic diseases so that those aging in places of choice are able to do so with good quality of life.
Some provinces have made great strides in the informatics side. The Public Health Agency of Canada has made great strides in developing a coherent and integrated national surveillance system. However, each province will still have to do much on its own.
I have tried to provide you with a fairly broad perspective of what the Health Council of Canada would identify for action. In a matter of closing, ramping up prevention strategies to prevent chronic health conditions is important; continuing to support public investments in healthy living is important; investing in proven strategies that improve quality of care, and engaging people in managing their own chronic conditions is important. Let us speed up the development of health care teams that can work in a redesigned system rather than having individual practitioners attempting to do everything on their own. Let us build a team around them so we can bring in the kind of expertise that can facilitate care delivery to those who need it. Increasing the awareness of Canadians to expect more from the Canadian health care system is encouraged. Citizens are likewise encouraged to take ownership in managing their health and that of their family with the proper kinds of supports that are needed in order for them to be able to be capable in doing it.
Finally, it is important to develop those appropriate information systems for us to be able to provide the information for good policy-making to take place.
I thank you for the opportunity to appear in front of you, and I am delighted to participate in any discussion.
[Translation]
Dr. François Béland, Full Professor, Université de Montréal: Madam Chair, my presentation will have focus on three areas, namely health, services and innovation. You can follow along more easily with the table, charts and figures included in my submission. These three focal points correspond to three excerpts from your committee's interim report. The quotes are included in the notes that I have submitted to you.
First of all, I want to focus on frail seniors, as they are referred to today in the field of geriatrics. They are a unique group of seniors. Frail seniors exhibit a range of physical, mental, cognitive and social characteristics which are deeply interwoven. I cannot stress this too strongly.
Secondly, the social and health services required by this group of individuals are complex and difficult to navigate through, especially at a time when these seniors have the least amount of energy to devote to obtaining these services — as we saw with Ms. Brousses's testimony — and at a time when principal caregivers have a great deal on their plate. Not only must principal caregivers care for their loved ones, they are called upon to navigate their way through an extremely complex system.
Thirdly, the best models, as you said, call for the integration of social and health services. The word ``integration'' is often overused and, depending on the context, it may not always mean the same thing. At times, it may imply coordination or cooperation, while at other times, it simply means the referral of a patient by one professional to another.
To illustrate how complex the health of this group is, you can refer to the first column in my notes which describes the various conditions that seniors exhibit. These include a host of chronic illnesses, cognitive problems and functional limitations. What kind of functional limitations do they have? Well, problems such as doing small things like picking up a cup with arthritic hands or climbing stairs. A person with arthritic hands will eventually manage to pick up a cup, but only after making a considerable effort. Seniors' activities are also restricted by their health. They may have problems communicating with others and may be unable to do household chores or go about their daily activities.
All of these factors combine to make a person frail. In the table accompanying my notes, I have drawn three profiles of fragile seniors taken from a sample of seniors. Today I will focus solely on the third profile, namely seniors requiring highly complex services because they exhibit all of the above-mentioned conditions. From this profile, we see that chronic illnesses can be distinguished from cognitive problems and disabilities.
Individuals who are in serious need of integrated services exhibit all of these conditions either at the same time or in sequence, so that at a given point in time, a range of services must be mobilized. The problems associated with mobilizing these services are what characterize our health system.
I would like to relate to you the story of one individual who we have called Mr. Pilon. That is not his real name, but his situation is very real. Initially, Mr. Pilon suffered from bladder cancer, heart disease and osteoarthritis and was mildly depressed. He lived in a residence for independent seniors in Montreal. Subsequently, Mr. Pilon had a fall. Often when a person with many health problems has a fall, it can have a snowball effect. Mr. Pilon was hospitalized and suffered some complications. His colon was resectioned. In other words, he had a colostomy because of his cancer. As a general rule, when a frail senior is discharged from hospital, he will have acquired more problems, such as other functional limitations. That is what happened to Mr. Pilon. He was ultimately discharged from the hospital, but was not longer able to live on his own. He exhibited signs of dementia, even though he had regained his mobility. He was sent back to live in a residence for independent seniors. However, as is often the case, the residence was not equipped to provide the services he needed. Mr. Pilon was readmitted to the hospital two weeks later and remained there for six months while awaiting placement.
Obviously, this type of situation happens only in Quebec. I am convinced the same thing does not happen elsewhere in Canada. However, Mr. Pilon's case is typical. It is extremely difficult to single out the different kinds of care and the different requirements a person may have because these conditions need to be addressed and negotiated all at the same time.
How are seniors impacted by the unique situation that you so aptly describe in your report? I am not talking about the impact on the health care system, or on health minister or officials, whether senior or junior. According to your report, there is no distinction between health services and social services, between treating persons and providing services at home. Seniors do not distinguish between the need for care and the need for services close to home. There is no administrative or financial requirement for integrating services — as we can see from current government policies. The need to integrate services is linked to the actual circumstances of seniors. We must look at integrating services from the standpoint of meeting the needs of frail seniors, not in terms of the needs of departments, regional organizations, hospitals, CLSCs or home care services.
Despite the efforts made and the reforms undertaken — Mr. Hollander spoke eloquently about what happened in the 1990s — we are losing ground a little at this point in time. The transition between facilities and between health care providers is extremely difficult. Take, for example, a person who goes from his residence to a hospital and from the hospital to heaven knows where. I experienced this very situation with my father who passed away about two years ago. There was some confusion as to where to put my father after he was discharged from the hospital. There was no place for him anywhere in the system. He required a very high level of care, but the hospital could no longer meet his needs. He found himself in limbo. My father's situation was not unique. Seniors everywhere find themselves in the same situation.
Today, seniors and their families are still largely responsible for the overall planning of the services they require. We hear a lot about case managers, but I have some concerns about case managers in the context of provincial health care systems. There is a danger of viewing the case manager's job as being of an administrative, not clinical nature. People tend to look at case managers as persons who ensure that the services prescribed to seniors satisfy accessibility rules, whereas they forget that a case manager has a clinical role to play. He must work with the patient and, naturally, with his family. Finally, various types of financing, payments and eligibility criteria for health and social services further complicate the process of managing cases and ensuring access to needed services.
Ms. Brousse was very fortunate to benefit from the services of the Department of Veterans Affairs. Veterans are virtually the only group that have access to services of this nature. I will have more to say about that later.
What is an integrated system? In the past ten years, we developed and implemented in Montreal a program jointly funded by the federal and Quebec governments. The program was based on universal principles that can be adapted to all environments.
SIPA, or the integrated services program for seniors, was based on the concept of providing needed front-line social and health services to frail seniors, regardless of where they happened to be. If they were in the hospital, the local SIPA service would assume responsibility for the individual and ensure follow-up action. If the person was in emergency, the unit would call the case manager who would then go to emergency and arrange a care plan.
It is impossible to separate health services from social services. Hospital services cannot be separated from home care services because for the people on the front line, there simply is no distinction between them.
Someone must be responsible for health care and service delivery in a given area. Service integration is impossible if there is no vision of care focussed on the public.
Local integrated services must assume responsibility for public health care services. This responsibility must not be limited to customers of these services, as they are called. I happen to hate the word customer when used in the context of health services. For me, a customer is someone who comes to a store to purchase a television, not someone who comes to a hospital or someone in need of home care.
Also, integrating health services means managing cases with the help of a multidisciplinary team available on site. Integrating services means mobilizing a range of resources quickly to meet needs as they arise, thus avoiding using available resources inappropriately.
A case manager who merely manages waiting lists is not doing much good. We would be better off putting the salary he is paid into services. A case manager must be able to mobilize resources quickly.
System integration occurs when resources are both mobilized and controlled, that is when effective funding is in place. It is crucial that these services be well funded. Integrated services must also be compatible with the universal services provided and with Canada's public health insurance.
SIPA, an experimental program which has now ended, was based on these principles. A number of scientific articles about this program were also published.
What results were noted and did the program prove to be costly? For starters, the costs were similar to those incurred for providing the usual services to frail seniors. I would like to use the small chart in my notes to illustrate this point and compare the costs of short-term hospital stays for persons in the SIPA program to those incurred for persons receiving the usual services; in the case of SIPA program participants, the cost of short-term hospital stays over a 22- month period were from $4,000 to $6,000 lower than for non-participants, depending on the limitations in daily activities.
When you multiply $6,000 by the number of frail seniors in Canada, a group that accounts for between 7 per cent and 9 per cent of persons aged 65 and over, you can see appreciate the program's potential for significant savings.
The integrated service approach does not target all seniors, but rather the group composed of frail seniors.
Summing up, what role can the federal government play? A number of ideas are developed in your report and I subscribe to some of them. I would like to suggest another, or rather, another idea and a half.
My first suggestion targets specific sectors. As you noted in your report, the federal government is responsible for certain population groups. I would like to focus primarily on veterans. I have been a member of VAC's Gerontological Advisory Council (GAC) since its formation about 10 years ago.
As you also noted, the council tabled a report entitled ``Keeping the Promise'' in which it called for an integrated health services system based on experiences in Quebec, in other Canadian provinces and in other world countries.
However, the Minister of Veterans Affairs recently dismissed this recommendation, to my deep disappointment. This was an opportunity for him to develop a system that would have demonstrated Canada's ability to be innovative and to meet the real needs of veterans as well as the equally real needs of Canada's aging and frail population.
Regrettably, once again the Minister of Veterans Affairs dismissed this recommendation for reasons unbeknownst to me. If the cost of the council's proposal was a factor, then the reasons were poor indeed.
If VAC's internal financial evaluations found that the costs associated with the system were high, then I would dispute these findings. In the past, the Minister of Veterans Affairs has wrongly estimated the real costs of planned reforms. For example, the PACC, originally estimated to cost $282 million, ultimately cost $100 million. The minister was way off base on that one. In the case of the integrated services program recommended by the Council, if the minister rejected the idea on the basis of cost estimates, then again, VAC must have been working with the wrong figures.
Another very important consideration, one that you stress in your report, but not strongly enough, is the funding of health care services in Canada. Obviously, if we consider what has happened since the year 2000, we see that the federal government has started once again to guarantee a certain level of funding for health care. However, in this case, we need to look back in time, to the birth of the health care system.
With all due respect, the federal government has failed to ensure adequate funding and continuity of health care services. It is absolutely critical that the federal government provide long-term stable funding, otherwise, the measures that we are proposing and that you are proposing, including for example, calls to extend Canadian health insurance coverage of home care and prescription drugs, will simply not be implemented, the reason being that the provinces will have no confidence in the stability of federal funding. For its part, this committee could call upon the federal government to provide assurances of stable funding.
And finally, while the provinces have indeed adopted some innovative solutions, I do not believe that these are an integral part of the system.
One pilot project launched in Canada was the HTF, or Health Transition Fund. Unfortunately, the program did not last very long. It should have become a permanent program benefiting from substantial funding to cover the cost of additional innovative services and serious evaluations. And believe me, serious evaluations are a very costly proposition. We will not see any ongoing innovative initiatives within our system without real federal government financial assistance. Without question, this is one of the roles that the federal government must take on. As I see it, the federal government could easily, without running into constitutional problems, take on the role of developing innovative health care measures.
[English]
Anne Martin-Matthews, Scientific Director, Institute of Aging, Canadian Institutes of Health Research: I thank the committee for the opportunity to speak to you today. This is my second appearance before the committee. It is gratifying to come back and speak to some of your recommendations.
I am here today in three capacities, the first of which is as the Scientific Director of the Canadian Institutes of Health Research's Institute of Aging, which, as many of you know, supports research that promotes healthy aging and addresses causes, prevention, diagnosis, treatment and palliation for a wide range of conditions associated with aging. I also, like Dr. Béland, am a researcher who has been involved in the field of aging research for 30 years. Third, as some of my colleagues around the table have noted, I have just spent several years caring for a parent through his death. Many of the issues contained in your report resonate for me on personal and professional levels.
In terms of the areas that you have identified in the report, I will speak to several that were particularly prominent for me and I hope that in the subsequent discussion we can identify several more.
What is central to the range of recommendations that you have in Chapters 4 and 5, and what I will speak to, is the need for an evidence-based approach to policy and to reform. We understand that this really is the best way to support the health of our aging Canadians.
I will give you a couple of examples in which some of the research funded by the Canadian Institutes of Health Research, CIHR, is working to move forward a number of the recommendations from your report.
It is important to applaud you for your range of recommendations. When I met almost a year and a half ago with this committee, I spoke of a two-year consultation process that the Institute of Aging has engaged in across Canada with 250 to 400 seniors and their representatives across all five regions of Canada. I believe that we tabled the summary report of that consultation with you.
The issues they identified are central to many of your recommendations. The most prominent ones in our report were health promotion, health care and health services, and then the issue of the transition from independent living to living with assistance or some type of care which, in our reports, have been called the housing care continuum, which is central to your focus in Chapter 5.
As some of you may be aware, the Canadian Institutes of Health Research is Canada's premier agency for health research. Through CIHR, in 2006-07 the government invested $85.4 million for research in aging. I will give a couple of examples of areas in which this research has addressed specific recommendations in your report.
In the chapter on healthy aging, you identify a range of recommendations for improved nutrition, prevention of obesity, mental health/dementia, housing, barrier-free design, issues related to mobility, and the building of a capacity in gerontological and geriatric specialization. These are all areas in which we have research and know what needs to be done. For most of these areas, a solid evidence base exists. It is important for that to be acknowledged as this committee moves forward with its recommendations.
Several of my colleagues have identified falling as a real and dangerous risk for seniors leading to broken bones, for many, signalling the end of independent living. One of the causes of falls, as we know, is the loss of sensation in people's feet as they age, making it difficult for them to stay balanced. One of the recent success stories in terms of taking an area from exploration through to research that is then tested in terms of the proof of principle, the workability of the concept, and then through to commercialization, is something called the Sole Sensor developed by a colleague, Stephen Perry, at Wilfrid Laurier University. It is a simple, inexpensive insole with a ridge inside it. When a person is about to lose his or her balance, he or she receives a sensation and a signal is sent to the brain, which alerts the person to the need to rectify his or her balance. This product became available in Canada in 2007 and is an inexpensive solution to a large problem; I want to emphasize that.
CIHR recently gave a Knowledge Translation Award to Vicky Scott of the University of Victoria for her work in training home support workers in falls risk assessments when they are in people's homes. Her work resulted in a remarkable 50 per cent reduction in falls over an 18-month period compared to homes where the workers did not have that training.
That is an example of where some of the recommendations in your report relating to training and qualifications of home support workers can be carried over to other areas and recommendations in your report; in this case, related to falls prevention.
You made a number of recommendations related to nutrition. Recently a screening tool called SCREEN, Seniors in the Community Risk Evaluation for Eating and Nutrition, was celebrated by CIHR through the Betty Havens Award for Knowledge Translation in Aging for use by practitioners when elderly clients come in for treatment and assessment.
You also talked about issues of barrier-free design and design standards. Here in Ottawa, CIHR-funded researchers have been working with the Canadian design standard council in recommending enhanced designs for handrails and housing design in Canada. This past year the institute that I lead funded a number of demonstration projects specifically on issues related to mobility and aging, because we know that we need to take the knowledge we have gained from research and move it into products and services. Many of the recommendations in your report address areas in which we are gaining this evidence base.
You had a discussion earlier today on issues of dementia. The report focuses very much on issues of diagnosis of dementia, but I would also talk about issues of delay and prevention of onset of dementia.
Data from the United States suggests that if we could effect a five-year delay in the onset of Alzheimer's disease, we would cut its prevalence in the population by 50 per cent, and we are attempting now, with the Alzheimer Society of Canada, to generate equivalent data for the Canadian situation. The Institute of Aging has recently launched an initiative called RAPID, Research to Action Program in Dementia, where we are working with practitioners on issues of delay of onset.
I applaud a number of your recommendations in building capacity in training in the area of geriatrics and gerontology. There will be challenges in achieving that objective, as you will know, in terms of cooperation of medical schools, university programs and the developers of curriculum. However, we must move forward on that initiative. Some of your recommendations in that area relate very much to recommendations elsewhere in the report on accepting qualifications of immigrant health workers, for example. There might be top-ups in training or some kind of incentive related to that; we do not have to train everyone from scratch.
Because I knew Mr. Hollander and Dr. Béland would be speaking today on the issues in Chapter 5, I have not specifically addressed them in these remarks, but I note the importance of your recommendations on the qualifications of home care staff and support to caregivers. We have a strong evidence base in Canada in these areas. In fact, some of my own research focuses on the issues of training needs and immigrant workers caring for older people.
I have tried to highlight a couple of areas where the recommendations you have made are very consistent with an evidence base that we have developed through research in Canada. We can be proud of the work that Canadian researchers are doing in relation to issues of aging, but we must also note, as I indicated when I met with you some months ago, that much of the research we have done is short-term, small studies, local projects without a longitudinal focus.
The Canadian Longitudinal Study on Aging, which proposes to track upwards of 20,000 Canadians from the age of 45 onward for a 20-year period, will be commencing this fall in cooperation with Statistics Canada. That kind of initiative will be vital to our establishment of a rigorous evidence base for a number of the policy developments you are addressing here.
I am sitting beside a very successful example of CIHR-funded research. The SIPA project and many of the recommendations that came out of that initiative were funded through CIHR.
I have noted a number of specific recommendations and I look forward to discussing others with you this afternoon. Again, thank you for the opportunity.
The Chair: I wish to thank all of the presenters. The positive news is that no one indicated they did not like our recommendations, so presumably you did.
I will make a brief summation of what the committee heard today. We have heard from witnesses that there is a need for even greater emphasis on integrated care and that this type of care worked well in the past. We heard that we need respite guidelines with flexibility and that we need to ensure that the same services are available in hospice palliative care to Inuit and Aboriginal people in other areas of federal jurisdiction. We heard from witnesses that we need to place more emphasis on the six main components of palliative care.
The committee heard of the need for hospice and palliative care training in long-term personal care homes. The need to address chronic diseases and the high cost of diabetes was identified. The need for accreditation standards seems to be a theme. We heard of the need for prevention strategies and the need to get on with electronic health records. We heard of the needs of the frail elderly and the concept that case management must be a broader mandate to include such things as mobilization and control of services. There is a need for the Veterans Affairs program to recognize its need to become more integrated in terms of its delivery. We heard of the need for stable funding and health transition funding to be made permanent as well as the need to ensure that the research is evidence-based.
What I got out of the last presentation was that we should not be reinventing the wheel. We should acknowledge that good things are being done, and perhaps we should point out some of those good things so that those who look at this report do not think they have to go back to square one. Last, but not least, and something we perhaps unintentionally missed, was the need to support the longitudinal study. I would recommend that.
That is my summary. You are the experts. We do not pretend to be experts in this field, but we are trying to provide a report to the Canadian public indicating a pathway to better delivery of care for the aged in our communities.
Senator Keon: Thank you for your excellent critiques and presentations. I will not address my question or remarks to anyone specifically. I would like to hear all of your comments. As our chair said, there are a tremendous number of good things happening out there, all the way from research and development to application. The exploitation of these good things for the benefit of the patients remains a huge problem. The navigation of the system is huge for people who find themselves in this predicament. I recall that from my own days as a health professional.
For example, a 92-year-old gentleman is bruised because he has collapsed and has fallen; he needs a pacemaker. We give him the pacemaker, but that does not cure him. He is 92 years of age and has come to the moment of truth in life. He does not know where to go and neither does his family. The acute care facility is anxious to find somewhere else for the man in order to free up the bed for someone else.
My own feeling, having lived with this for about 35 years in the system, is that we were never able to integrate what we had at the community level. Getting into the definition of community can be a very complex undertaking. Whether you consider Ottawa a community or whether there should be 20 communities within Ottawa becomes the question. Many of the services and much of the knowledge that must be translated is way up there at 30,000 feet.
It seems we have many good things happening at an elevated level, but we have not been able to find a way of integrating health and social services at the community level the way they should be so that the health professionals, social service professionals and others involved can act as navigators. The aging person and his or her family are not navigators. Currently, they are frantically trying to be navigators.
I think you get the gist of the question. Maybe you could start, Dr. Béland. I would like all of you to comment on how we can say something useful in our report about the ideal way to integrate properly what we have here today, and things will get better tomorrow. If people knew how to access and navigate the services, they would be so much better off.
[Translation]
Dr. Béland: Recently, I presented the results of the SIPA program in Ontario. I told my listening audience that the one lesson it was important to remember from this experience was that these initiatives could be applied to their community, based on available resources. In terms of applying these integrated models, I do not think there is only one possible approach, but rather various approaches adapted to local conditions. It is important to remember a few of the broad principles underlying these integration models. But here again, when real situations arise, compromises must be made.
When we developed the SIPA model, we felt it was important to integrate all social and health services. The key to any health care system is money, just as money plays a role in all human activities. We felt that all budgets and financial resources should be controlled by SIPA in order to ensure that all frail seniors in a given region receive the services they need. Hospital budgets, drugs, home services, housing and so forth would all come under SIPA's umbrella. Budgetary oversight would allow the program to strike a balance between the needs of each frail senior and available resources.
Take, for example the special insole mentioned by Ms. Martin-Matthews a few minutes ago. With a highly centralized system, it would be very difficult to ensure that seniors are outfitted with this insole. However, if health care budgets were under local SIPA control, the scenario would be quite a different. The thinking would go something like this: 1) some frail senior are prone to falling; 2) each time a senior has a fall, it results in hospitalization costs in the order of ``X,'' a far from insignificant amount; 3) if 50 per cent of all falls could be prevented with the help of this insole, then it is worth supplying this insole to persons at risk of falling; therefore 4) persons at risk will be outfitted with this insole under the terms of a health care protocol. This ideal funding system is tied to individual needs and local officials have decision-making powers.
Consider the example of home care. Virtually all home care services will maintain that home care costs $10,000 or $15,000 per year, and that the impact on their budgets is significant.
However, a publicly-funded spot in a long-term care facility in Quebec costs about $50,000 a year. A reasonable person would argue that if it costs $50,000 a year to house someone in an institution, then up to $49,000 could be spent on home care and there would still be savings of one dollar a year. And yet, virtually no one in Canada's public health services sector seems capable of comprehending this fact.
Admittedly, if home care costs total $15,000 per year, then the person in question likely has so many functional problems that he qualifies for placement in a long-term care facility. Thus, we prefer to spend $50,000 a year for long- term care than $15,000 for home care.
And while home care service providers find this logic to be quite sound, the implications for the overall system are catastrophic. Clearly, the problem is to find a way to implement a policy based on a sound reasoning and financial incentives. As matters now stand, I do not believe that any one provincial government would be in a position to implement a policy of this kind.
Implementing an integrated system with financial provisions and positive incentives can only be done gradually. One of the first steps would be to adopt a case management approach, supported by a multidisciplinary team with responsibility for providing a range of services to the public. These steps can be taken virtually everywhere. However, to say that a case management approach will be taken to allow people to navigate through the system on their own will only give the kind of results noted in the major United States inquiry Channeling. This inquiry found that a single case manager cannot truly mobilize all of the services required. Of course, we can fool ourselves into thinking that these things only happen in the United States and never in Canada.
There are a number of steps in the process of implementing an integrated system. However, one step does present some very real problems — and the experiences of seniors involved in SIPA highlighted this very clearly. It must be remembered that the seniors participating in the SIPA program had a range of disabilities and health problems. One of the problems encountered was integrating front-line doctors. When a front-line doctor's next patient is a frail senior, the timing of the appointment becomes problematic. For starters, because of mobility issues, it takes the frail senior much longer to settle down in the office. The doctor must then communicate with the senior or with the person accompanying him. The appointment might end up lasting 45 minutes. These doctors who are paid according to the number of patients they see cannot afford to spend this amount of time on the seniors. The system in place governing the remuneration of doctors is totally incomprehensible. It cannot work.
Geriatric nurses could be called upon to play a key role in managing access to medical services. They could be in contact with the case manager and multidisciplinary team and could even be a member of this team. This relationship would ensure real continuity in terms of medical needs and ongoing monitoring by medical and social services.
So many things can be done. Some initiatives are more modest in scale, while others require considerable effort. However, actions must be taken in proper sequence. One system cannot be applied across Canada. For instance, one system cannot be applied in Montreal where there are several hospitals and where there is no territorialisation of hospital service sectors or long-term care facilities, unlike the situation in a community such as Arthabaska where relations between facilities and care providers are much simpler.
It is not possible to have a single integrated services model. However, several principles could be followed: people could consider a sequence of steps to implement and then perhaps put these to the test using scientific evaluation protocols. A pilot project could be carried out under the HTF, and could go further than what was done under the SIPA or PRISMA programs in Quebec, or under the CHOICE program in Alberta. An HTF pilot project could also be carried out in close cooperation with, for example, the Canadian Health Services Research Foundation.
There are so many things that we can do!
[English]
Mr. Juzwishin: I think it is an intriguing question. I would like to respond within a historical context because I believe it is a great example of where the successes of our forefathers have actually come to be the reason why we are struggling with these issues.
In 1948, we saw the establishment of the hospital grants and in 1958, Parliament passed the Hospital Insurance and Diagnostic Services Act. In 1968, physician services became accessible to all Canadians across the country. In the 1970s along with comprehensive continuing care, we had tremendous success in being able to develop a medical and institutionalized orientation to health care within society. In the 1980s, with the retrenchment of the ability to be able to sustain those kinds of costs, we reverted to a regionalization program across this country which then began to fragment everything. We hear the cry for navigators to help patients find their way through the system. Our parents and grandparents need navigators to help them navigate their way through the silos and islands of the system.
You have identified the kinds of best practices there are across the country. We can shine a light on these best practices to spread them out throughout the country while providing encouragement and inducement incentives. The word ``innovative'' was used earlier. We are not very good at rewarding innovation within our settings primarily because they do not fit within the columns of accounting that we are using.
There are all kinds of financial incentives — and you have already spoken to many of them — that actually keep people from doing the right thing or encouraging people to stop doing many things that may not necessarily, based on evidence, be all that effective. In fact, because they are the way I make my living, I am really not going to change the way I deliver care.
To achieve the kind of integrated community setting we would like to have, I think it is necessary to take a hard look at the disincentives found in the system. If you put the incentives in place, the other will follow. People will generally follow the money and that will be a fairly strong incentive for you to be able to put into operation.
Ms. Baxter: I have a 94-year-old grandmother who has dementia and about two years ago, we had to put her in a long-term care facility because we could not keep her safe any more. My mother had to retire because of her efforts to figure out the system; the phone calls, the site visits, et cetera. We all have those stories to tell and I am thrilled that you have spoken about patient navigators. I think such navigators will be key to the proper running of the system.
However, you can look at it in different ways. We have talked about case managers. In the 2004 health accord as it pertained to palliative home care, they moved towards instituting case managers in the areas of pharmaceutical medications, nursing care, personal care and case managers. Someone had some insight back in 2004. It was patient and family centred. For those jurisdictions across the country — and we are just getting our progress report ready now and we have done a survey across the jurisdictions — that have done good case management. I think we have seen better family supports and possibly better integration and services so people are going into the right service at the right time. I believe that is key.
When the system collapses, particularly around end of life and the family is left to waver in the wind and try to figure out what to do, often having someone there to help you manage the system is what is important. For end of life, it is one of the most important things.
I encourage you to look at that. As much as the system's approach is important, it is quite incredible that the acute care system does not work well with the long-term care system that does not work well with the home care system, and people become stagnated in certain places because we have not figured out the long-term care bed system because they are in acute care. Those types of systems approaches are very important.
I also want us to bring back to the whole patient and family navigator thing. We need to keep in mind a parent- centred approach. We can talk about these big systems, and in the end the patients and the families become lost. We need to look at case management in both ways: How to get the systems better integrated, but also how to support the patient and the families during these stressful times.
Mr. Hollander: What is important is to bring together the range of services that seniors need and to help them navigate through the system. What would be helpful is a system of care designed for the needs of seniors that allows clinicians to do their work in the most effective manner.
There are some misunderstandings about larger systems; that they somehow take over and so on. Appropriate larger systems of care, whether local or more broadly based are ones that start with the patient first and the notion of supporting the clinician, the notion of allowing people to go through the system in a way where their needs are met most appropriately by the kinds of responses that can be provided by the system.
Let us call it a ``system'' for purposes of discussion. What you need is a system that has a broad range of services, which includes the things that seniors need: Community services, home-support services, nursing services and linkages to primary-care services. They also may go to facilities, so it would be useful if they are in that system, and even specialized assessment centres and hospitals and so on.
If you have a broad range of services all under one umbrella, then you can make policies so that they are designed to assist the person to go through the components of that system. If they are separated into departments for home care, residential care and home support and so on, you continue to have barriers based on eligibility and a range of other things. In fact, I would argue that kind of system is not particularly efficient or cost-effective, and it is not good for the patient. Clients find roadblocks as they try to go from one type of service to another or to get a range of services. In terms of budgets, each of those areas is trying to increase its own budget rather than looking for best value for money in the system as a whole.
First, you need a broad range of services. Once you have that, you need very good system-level case management that provides a number of things, not just navigation although navigation is an important aspect. Coordination is another aspect that includes linkages with areas outside the system to try to obtain the best care. It includes the ability to authorize service so that as a case manager — whether working individually or in a multidisciplinary team where the team itself might be a case manager — one looks at the real needs of that individual and authorizes the services that the person needs.
Those are some of the key aspects. What is interesting is if you look at the literature, many of these elements and characteristics are common, whether dealing with local or more broadly based systems. Certainly, in Canada, the SIPA system and the PRISMA system in Quebec share many of the same kinds of things I am talking about. The system we had in British Columbia is also similar in many of those issues. A lot of it has to do with having a broad range of services, a single administrative authority, a single budget, and the ability to have someone advocate on behalf of the client and help them go through that system. The person needs someone to advocate not just navigate because then you might be dealing with different organizations saying they will look after this person or they cannot because of this reason, and so on. They must be able to authorize services.
If you have those things in place, you are a fair way to reaching the goal. I think Senator Keon has expressed the problem. This type of systemic approach is the solution to that problem. We have had it on a broader provincial-based system in the past in Canada. I think we have good examples of it now, where they are more developed locally and for people with higher care needs with SIPA and PRISMA.
I supplied documents to the staff of the committee. The first is a paper we had published in Healthcare Quarterly, where there are three briefing notes: One on the importance of integrated models of care; one on the importance of long-term home care and home support services; and one on the importance of providing appropriate support to informal family caregivers.
The second paper is what we call a best-practices framework for organizing care-delivery systems for people with ongoing care needs. There are 10 best practices. I may have alluded to this in my previous presentation, so I will not go over it again. There is a blueprint 10 specific best practices. If you set up a system with these best practices and have people who are competent to manage that system, there is a very good chance that most of the issues Senator Keon expressed would be significantly reduced or mitigated.
It is a framework because we recognize one needs to adapt things locally. It also applies to broader issues like children with special needs and so on. It is basically a higher-level blueprint. If you are thinking about what we can do to provide better care, then it is a good starting point for anyone who wants to develop a well-functioning system of care for the elderly in their area, region, or province. I have made those papers available.
I agree with Dr. Béland that administrative and fiscal control will be key. Let me give you one example of why because sometimes, when I discuss these things, they get abstract. I can tell you that when I think about them, I think about the client, the clinician and how the system can support those people and that is essentially the fundamental basis on which it should be developed.
In British Columbia, we had a system where we had residential care and community care, et cetera. One of the conditions was that people had to buy into the provincial policies that applied to the whole system of care to be in the system. What would happen on occasion is there might be a facility that might be reluctant to take a particular client; it might have preferred the third person down on the list because that person would be easier to care for and so on. One would have to meet with the person and point out that there are policies that must be followed whether agreeable or not. Not in a heavy-handed way; obviously we had discussions.
The point of this is that you need to be able to look at things from this broader systems perspective in terms of what is best for the client and to have administrative and financial levers that allow you to take the steps necessary to ensure that the kinds of services you think are best for the client can actually be provided.
[Translation]
Senator Chaput: Thank you for your very interesting presentations. My first question will be directed to Dr. Béland, but all of you can respond.
You told us the story of a fictional person by the name of Mr. Pilon. Had this person had access to an integrated health services system such as SIPA, would he have been able to continue living in an independent seniors residence?
Dr. Béland: This person was suffering from bladder cancer, heart disease, depression and osteoarthritis. A range of health care protocols apply to persons with a complex medical history and few functional limitations. Specifically, there is a protocol in place for treating persons suffering from depression, and another for persons with heart disease. These protocols would have been applied in this case and we would have made sure that this person received the care he needed. Since he was suffering from four chronic illnesses, there would possibly have been integration problems from the standpoint of patient medication and monitoring.
We would have made sure that this individual had a family doctor and the case manager would have contacted the family doctor.
Specifically, SIPA had a protocol for falls. That protocol would have gone into operation. Then the person might well not have fallen in the first place, and gone to hospital. The sequence of events would have been broken at the outset. But let us just assume that the person did fall — not everything can be prevented. At that point, the person would have been brought to hospital. There was an agreement between SIPA and the hospital: when a SIPA patient was admitted, the hospital would inform SIPA. The case manager would come to the hospital and begin negotiations on treatment and discharge date. The discharge was planned: where, when and how it was going to take place, plus the range of care and services that would be necessary after discharge, like medications, home care, nursing care and so on.
There was a series of planned steps to take and protocols to follow. This happened whether a SIPA patient showed up at Emergency or just came to the hospital. There was always a case manager backed by a multidisciplinary team that would swing into action and, as Mr. Hollander said, the case manager could mobilize resources from the members of the multidisciplinary team as needed.
That was what Mr. Hollander called the ability to call upon services and make sure that they are available. In particular, especially with time, people in the hospital began to say, ``this is a SIPA patient; we are going to be able to do some planning.'' The entire approach changed, in fact.
Clearly, given that SIPA did not have access to the entire social service and health budget, it was not able to mobilize all the resources that it would have liked, even though they wanted to test it as a demonstration project. But a commitment along those lines would have required a lot of money, whereas the HTF only had limited funds available. In the first five or six months of the project, case managers had this reality to face up to and would tell us, ``I cannot provide home care because it will be so expensive.'' We had to tell them: ``Go ahead as if you had all the money and, hopefully, the amount you spend on home care will be saved as other services are used less.''
With SIPA, we were able to show that costs really were transferred from institutional services to home services to the tune of about $5,000 per person over 22 months — I can get you the exact figure.
That is what you have to keep in mind: when you have an integrated system, the entire sequence of service delivery changes.
Senator Chaput: For a system like SIPA, what were the most difficult things to set up? Then, if this is a system that you would like to suggest as a model, which responsibilities would be provincial and which would be federal?
Dr. Béland: The hardest things to set up, well, it must be said that it was a demonstration project. In one sense, we were incredibly lucky. We developed SIPA with a team of university people, physicians, specialists in geriatrics, representatives from the Quebec ministry and representatives from a wide range of institutions. The SIPA model was designed, and then proposed in a report prepared for the ministère de la Santé et des Services sociaux du Québec and in an article published in the Canadian Medical Association Journal.
Then, the Montreal regional health board — it was still a board at the time — came to us and said: ``We are interested in testing the model.'' But there was not enough money to fund the setting up and the evaluation of the model. The Ministère de la Santé et des Services sociaux was not able to free up the funding necessary to set it up. It became locked into a process of transferring funds from regular services to SIPA before the potential effect of SIPA on health care funding had the time to become clear. That is when the federal government set up the HTF. The HFT had the money. It made all the difference in the world; it became possible to put a demonstration project together. Having that money was very important in getting the project off the ground. So we really were very lucky to be able to coordinate it all. We had a stroke of luck without which we would not have been able to test SIPA.
The demonstration project lasted for 22 months; I thought that a year and a half was not enough and I feel I was right. For all kinds of reasons, people wanted to expand SIPA much too soon. The HTF money dried up, provincial funding could not take its place. From that point, there were very tough negotiations between regional representatives and the ministry. In the end, SIPA could not sustain itself; it really was in a demonstration phase and it should have been continued. But there was nothing to guarantee on-going funding, and so SIPA fell between the cracks.
You asked what are the federal, provincial, regional and even local responsibilities in the development of integrated services. Personally, in Montreal's case, I think that, if Montreal had no regional agency responsible for planning, programming and management, it would be impossible to run things from Quebec City. So I do not think that it is possible to run things from Ottawa either. However, the federal government certainly has a role; I have said so here and I believe it.
When you look at the history of the health insurance system in Canada, it is still quite remarkable. We adopted basic little criteria for our health insurance system. Five criteria plus federal money. Look what we have done with those five criteria. Of course, on the one hand, there are some challenges and so on, it is not moving forward very quickly, people view it very negatively. But on the other hand, we can see what the effect of those five criteria has been. One of the effects was that the provinces had to invest in areas other than the medical and hospital services that the act stipulates. We know that the Canada Health Act applies only to medical and hospital services and that the provinces had to invest in home care, in long-term care facilities, in physiotherapy, in occupational therapy and so on, to complete the system. Of course, there were negotiations about the Established Progams Financing (EPF) and so on, that resulted in an absolutely incredible stimulus to the development of social health services. Five little criteria!
What I am saying is that the federal government has this ability to innovate and to develop, with regulatory means that are few in number but very well chosen. By putting in the money as well, of course, it can get things moving. I believe in that ability.
But I have a really hard time understanding wanting to use national criteria for very specific practices. A national standard for home care, for example. I will tell you this upfront, it will be a complete failure. But if they said that home care was now going to be considered just as essential as medical and hospital services, that the five criteria of the health insurance system were going to apply, and federal money made available, you would have home care services across Canada right away. They could well be different from province to province, and that is to be expected.
What we need is for things to start moving, from Newfoundland to British Columbia. The policy of innovation, and the sharing of innovations that one or other province might come up with, can perhaps be the federal role. But they should also accept that there will inevitable differences that are probably necessary.
[English]
Senator Mercer: Ms. Brousse, many of us have walked a few steps in your shoes but, fortunately, not a mile in your shoes, yet. You have our thanks and our respect for your efforts.
Mr. Hollander, in respect of the committee's recommendation 68, you said in your presentation:
The committee might also wish to consider adding the comment that an integrated system, with a full range of services, allows for cost-effective trade-offs between lower-cost home and community care and residential care, while maintaining the same, or better, quality of care.
You then provided the British Columbia example that you know best. You gave us a breakdown of what was in the budget in 1992-93. With respect to your recommendation, how many people were served by this budget? What savings were realized in British Columbia because of the integration of the service? Were the savings measurable at the time?
Mr. Hollander: We have some data, but I do not have it with me and I do not have it memorized. I believe I provided it to the staff of the committee. If they do not have it, I would be happy to provide it again.
We have conducted several studies where we looked at the comparative costs of home care, community care and residential care for the elderly. We looked at the care received based on equivalent care need, that is, we did apples-to- apples comparisons. For example, if you have persons with level A needs, we looked at the cost for that person with those needs in communities and facilities. While there are exceptions, we have done this a few times and it consistently indicates that the costs for providing care in the home and the community is considerably less compared to a long-term care facility. Depending on needs, the cost may be reduced by up to one-third or one-half. Although not for every person, on average, we have lower costs in communities. There is now documented evidence. There are a limited number of studies, but it seems clear and consistent in all the work we have done. The weight of the evidence has now shifted so that if people argue the point, they would have to prove it is not the case in further research.
The second point is that we had a very difficult economic time in British Columbia in the early 1980s that were close to the Great Depression. There was 14 per cent unemployment in some areas and budgets were very tight. We decided to hold off on new facility construction to try and weather that period, which we did.
When funds became more available, we developed the planning and resource allocation model in which we took funds from Treasury Board allocated for growth in population and care needs. Through the budget process, we developed this planning model and tabled it with our annual budget. As administrators, we wanted to make a choice to take whatever funds Treasury Board gave us to supplement care at home and in the community and limit care in facilities. We did that for a number of years.
Getting to your point, I have a chart. I cannot remember exactly, but I think the overall utilization rate from 1985 to 1995 for people in the system of care, both community and residential, was 163.7 per 1,000 aged 65 years and over. These proactive policy choices enabled us to move the proportion of people in facilities from about 70 per 1,000 at age 65 or over to about 50 or 55 per 1,000 for those aged 65 and over during that period. We reduced the number of people in facilities and we increased the number of people being cared for in the community. That is a major shift from residential care to community care.
I think you can use those figures to argue savings generally or you can also use those figures to argue for efficiency in that even if there had there not been less money, we would have been able to care for considerably more people in the community. Overall, that change over the 10-year period was significant as we were able to make that substitution.
Senator Mercer: I have a question for Ms. Wilkinson and the Alzheimer Society. However, others may comment. We have not talked about the role of volunteers and charities such as the Alzheimer Society. Ms. Baxter used the words ``the need for patient navigators.'' Is there a role that volunteers and charities can play in their support capacity to help facilitate this integration that we have been talking about today?
Ms. Wilkinson: Absolutely. We run a pilot program in Ontario, Saskatchewan and B.C. called First Link, which creates collaboration between family physicians and the Alzheimer Society. When a person is diagnosed with dementia, he or she is not only given education about the disease, but also referred to the local Alzheimer Society. The idea behind this project is exactly as you mention. The volunteers and staff at the Alzheimer Society step in to educate both the person with the disease and the caregivers. Information is provided on the services they need such as support and counselling. However, they can also act as navigators as the disease progresses and people have questions about home care, respite care and end-of-life care as well.
Senator Mercer: You are only in Saskatchewan, Ontario, and British Columbia. What are the limitations?
Ms. Wilkinson: The limitations come back to the Alzheimer Society itself. We are only at the pilot stage because before you can implement a project like this, you need to ensure that you have the support services within the society itself to be able to accommodate the people being referred. We are starting slowly. Ottawa was one of the first communities in which First Link was piloted. We want to expand to the rest of the country.
Senator Mercer: Does most of your money come from donations from the public?
Ms. Wilkinson: Yes, that is correct.
Senator Mercer: Do you have a volunteer board of directors?
Ms. Wilkinson: We have a volunteer board of directors. The society has a strong volunteer base. There are financial limitations in what we can do. Unfortunately, some of the smaller communities in Eastern Canada do not have the same support that larger centres like Toronto, Ottawa or Victoria have.
Ms. Martin-Matthews: In looking at the report generally and not only in regard to the chapters we are discussing today, we need to emphasize the notion that we have two generations over the age of 65.
I tried to make that a dramatic statement in some of my presentations by showing a picture of an 87-year-old man. It is our representation of the typical senior. In the photograph, his son, who in this case is Mick Jagger, who will turn 65 years old this summer, joins him. That is a dramatic example.
Senator Mercer: He looked old 20 years ago.
Ms. Martin-Matthews: That is true. Some people are astonished that he is only turning 65-years-old.
However, I try to make the point that we do have two generations when we talk about aging and who is entering that threshold of 65 years. Statistics Canada and other institutions are conducting interesting studies to demonstrate the unpaid work performed particularly by the younger generation within old age.
Dr. Béland commented that his focus on the needs of the system emphasized that he was referring to the frail population. When we talk about projecting what these kinds of systems will cost, and we talk about the large number of people that are aging and will cross that threshold of 65 years, it is not as though every one of them will need that level of care. We are talking about a process that will go on for 40 or 50 years in some cases for some people. There is a community of volunteers and others who are prepared to give their unpaid labour to be facilitative within that process. I think that is where you are likely recruiting a lot of your volunteers, and that it is a point worth mentioning.
Senator Cordy: Sixty-five does not seem as old to me today as it did 20 years ago.
I would like to get back to the idea of the case manager, although I love the term ``patient navigator.'' When you use that term, there is no doubt as to who is the important person in the whole picture. I really like that.
A number of you have given us the wonderful things that a patient navigator or a case manager would do to mobilize the services. I think we all recognize how important that person would be to someone trying to navigate our system.
Dr. Béland, I gather from the information you gave us that you are using that within the SIPA system in Montreal. We are having challenges in some of the smaller provinces in some of the rural areas in trying to ensure that nurse practitioners are utilized to their best advantage. Are you having challenges from within the system for case managers?
There is no point in having a case manager or a patient navigator who is working outside the circle; as my mother would have said, there is no point of whistling in the wind. If no one is listening to you and you are not within the circle to make things happen, we could have 1,000 patient navigators but if the system is not willing to let them in, all is for naught.
Are the case managers in Montreal within the system? If they are, how did you make them part of the system? I do not think there is anyone around the table who would not suggest this is a wonderful practice to follow. However, if this is one of our recommendations, how would we also ensure that they are allowed to do what they should be doing?
[Translation]
Dr. Béland: I have to repeat that SIPA was a demonstration project funded for a specific period. Discussions took place with a view to implementing it, but, for reasons that I am not fully aware of, the decision not to continue the experiment was made at a higher level. Other experiments at integration are under way. In Quebec, the Couillard reform to integrate facilities, for example. Presently, there are 95 health and social service centres in Quebec; more or less all of them have a hospital, a reception centre, a home care centre, a CLSC. Some integration is being done; it remains to be seen how that will translate into front-line clinical services to the public.
As for case management, I think the term is somewhat unfortunate because talking about the management of a case seems to play up the administrative role of the case managers when we should not be talking about administration but clinical work. If someone can find a better term, that is fine by me. The problem is that terms like ``case manager, case management, care manager'' and so on, are extremely common these days. They started in the United States and are also used in Europe.
In SIPA, case managers were nurses or social workers, depending on each patient's major problems. If a case involved mostly social issues from the outset, the case manager was a social worker. If it was mostly a health problem, it would be a nurse. However, when nurses were managing cases, they had very little time left for nursing work. The same thing applied to the social workers. To start with, we thought that a case manager could handle a caseload of 50 patients. We had to bring that down to 40. Once again, these patients are extremely delicate. Case management is a full-time job and is becoming a clinical specialty. We did not want case management to become isolated, if only because we had read major studies like Channeling in the United States. Other studies also show that, when the case manager's work is done in isolation, it has almost no effect. We wanted the case manager to be part of a multidisciplinary team built around immediately available services, essentially home care services, but with a complete range.
The SIPA team also had a pharmacist, family physicians, consulting physicians, and also a consultant specializing in geriatrics. The case manager was a member of the team and could mobilize resources directly. There were also regular multidisciplinary meetings where cases were reviewed systematically and where the manager would get the team working in a certain way. He could point out specific details about a patient to the nurses and suggest changes to services according to his knowledge of the patient's condition.
You are right; a case manager cannot act in isolation. If he does, he becomes a kind of ``broker'' and that is not the kind of work that a case manager should be doing.
In rural areas, of course, service integration has to be organized differently. The situation is nowhere near the same as in big urban areas. But it is easier in rural areas because people know each other and you can have case managers who are able to bring teams together. It can be easier to work with front-line physicians in rural areas. One of the biggest difficulties with SIPA was getting family physicians on board.
Of course, a case manager cannot be perceived as isolated. He must always have the support of a multidisciplinary team and the ability to mobilize resources and services. In rural areas, the danger of isolation exists, but it is equally possible to have easier access to resources because people know each other. But we also need incentives so that people run after the money to maximize the integration of services.
[English]
Mr. Hollander: I thank you for that excellent question. Certainly, the SIPA program has an excellent process of case management and care coordination, as Dr. Béland has outlined. That program also deals with people at the higher levels of care need.
In the British Columbia model that I have been talking about, we were dealing with people who had needs that you might describe first as preventive home care and substitutive home care. In this system, I refer to these people as system level case managers.
One of the distinctions we had in B.C. that was not the case in similar systems in other provinces was that the case manager stayed with the individual regardless of where they went. Often in other systems, the case manager will look after community services but, once the person goes into a facility, he or she hands over case management to the facility.
In my view, the best-case scenario is a system-level case manager that stays with the individual. The manager advocates for the person and assists the person, whether he or she is going into hospital, long-term care, or changing services within the community.
The characteristics I think would be important and certainly were in British Columbia include seeing these people as the client's advocate. They are people that explain the system and do their best to ensure the client receives the kind of service he or she needs from the system. Second, they are navigators. In British Columbia, we had a wide range of services, as I have discussed and these people could navigate within the system. They went out to community agencies to see what additional services could be provided. Third, they were care authorizers; they had the ability to authorize services and order them up. Essentially, they could make those kinds of financial decisions.
There is a danger if one moves to this kind of a model with the authorizer role. I did not realize this danger until someone asked me if the case managers face financial constraints, do they not become fiscal police on behalf of the organization and restrict service. That is an important danger to recognize.
Intuitively, we tried our best to allow the case manager to continue to be the advocate for the client as well as the authorizer. If there were issues of financing, we took those on ourselves. We found ways of saving money by being more efficient and all of those other things. We obviously had to let people know there were financial constraints and that they needed to do their job within those constraints and do the best they could. However, we took responsibility for dealing with the overall financial issues at a management level so that case managers could continue to be advocates. In any future system, it is very subtle but it is very important that, if the case managers are care authorizers, there is a clear mandate for the predominance of clinical need over financial constraint. That is a very subtle and difficult kind of thing to do. That is a danger. While we did not do it perfectly, we were aware of the distinction and tried to find ways of obtaining additional money so we would not turn the case managers into fiscal policemen.
Senator Cordy: Thank you. That was helpful.
Ms. Brousse, you talked about guidelines for respite care. Anyone who is caring for someone who is ill knows that guilt can also kick in. You made reference to it. What types of guidelines do you mean?
Ms. Brousse: I mean how often and for how long. In addition, it is just something to tell the caregiver that they need to make use of the respite service. That is the biggest thing; they should be using it.
I provided peer support for a lady who had not been to any Alzheimer's meetings and had no education on the disease. She was my age and her husband was a bit older. He had Alzheimer's. Never mind using the respite care service, she did not even know what it was. Finally, she got him into respite care, but by that time, the social worker stepped in and told her he had to be placed into long-term care. I guess that we should provide more information to people so they know it is there, what it is for and how to use the education portion.
Senator Cordy: I would like to point out that respite care is beneficial for both the client and the caregiver.
Senator Chaput: Do you think we are open to that knowledge even if we are not there yet, or, as a rule, do we wait until it hits us in the face and then we ask for the information?
Ms. Brousse: I think it would be good if we knew ahead of time. I know our case manager from Veterans Affairs Canada also sees my next-door neighbours who are 87 and 89 years of age. They are so reluctant to accept anything. Therefore, education about help for people and knowing that it is not a sign of weakness is important.
The Chair: I want to thank all of our presenters today. It was extremely valuable to take our options to you and to get your feedback to know we are on the right track. Obviously, in some areas we need to do some infill and make them broader and more representative of the kinds of ideas you presented this afternoon.
Honourable senators, you will remember we go in camera now because we want to discuss we have heard. I will ask permission from senators that our staff remain.
Hon. Senators: Agreed.
The Chair: Thank you.
The committee continued in camera.