Proceedings of the Special Senate Committee on Aging
Issue 11 - Evidence - June 18, 2007
OTTAWA, Monday, June 18, 2007
The Special Senate Committee on Aging met this day at 12:32 p.m. to examine and report upon the implications of an aging society in Canada.
Senator Sharon Carstairs (Chairman) in the chair.
[English]
The Chairman: Good afternoon, everyone, and welcome to the Special Senate Committee on Aging. This committee is continuing to examine the implications of an aging society in Canada. Today's meeting will focus on palliative care, home care and care giving. It will come as no surprise to the members of the Senate that this is an area in which I have a particular interest.
We will begin with Ms. Nadine Henningsen, Executive Director of the Canadian Home Care Association. CHCA is a national, not-for-profit membership association dedicated to ensuring the availability of accessible, responsive home care and community supports that enable people to stay in their homes. Through ongoing dialogue, publications and position papers, CHCA promotes excellence in home care through leadership, awareness and knowledge.
From the Canadian Hospice Palliative Care Association, we have with us today Ms. Sharon Baxter, Executive Director, and Dr. Lawrence Librach, Vice-President. CHPCA offers leadership in the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened. It strives to achieve its mission through, among others, increased awareness, knowledge and skills related to hospice palliative care, and advocacy for improved hospice palliative care policy, resource allocation and supports for caregivers. Dr. Librach is one of the leading palliative care physicians in Canada.
We also have, from the Pallium Project, Mr. Michael Aherne, Director of Initiative Development. The Pallium Project is a collective of interested people who collaborate in developing tools, resources and strategic initiatives for hospice palliative care. It facilitates opportunities for individuals and organizations from various sectors in Canada's provinces and territories to work together to improve the quality of living and dying. The Pallium Project is located in Edmonton, Alberta, but, as my notes say, services everyone across Canada.
To all of you, welcome to the Senate of Canada.
Before we begin, I should like to inform my colleagues that VON Canada has sent its apologies for not being able to be here today. It hopes to have the opportunity to appear later.
We will begin opening remarks and then follow with questions.
Nadine Henningsen, Executive Director, Canadian Home Care Association: Thank you for inviting me to speak to you today. I wish to begin by sharing the Canadian Home Care Association's definition of home care. We define home care as an array of services for people of all ages, provided in the home and community setting, that encompass health promotion and teaching, curative intervention, end-of-life care, rehabilitation, support and maintenance, social adaptation and integration, and support for the family caregiver. It is important to note that this definition differs from the one developed in 1990 through the working group of a federal-provincial-territorial group. That group described home as a substitute for institutionalization. They looked at a substitute for either acute care or long-term care. In our definition, and it is important to begin the grounding with this, home care reflects home care as an essential part of an integrated health system that provides quality care for Canadians of all ages.
As honourable senators know, home care lies outside the Canada Health Act and, as such, is a provincial and territorial responsibility, with the federal government directly involved in federally funding home care for veterans, First Nations and Inuit people, and the Royal Canadian Mounted Police.
Home care is a relatively new component of health care, with the first publicly funded home care program having started only 37 years ago in Ontario. By 1988, all provinces and territories had initiated some form of home care services that reflected the unique characteristics and needs of communities.
Because of the regional development of home care programs across Canada, there is currently an absence of common terminology, definitions and data related to home care. While this diversity poses a number of challenges when looking at access to home care services and human resources across the country, the benefits of a flexible home care program that addresses unique community needs, we believe, through the Canadian Home Care Association, outweigh the lack of national uniformity. Based on past recent experience, the association believes that the development of a national home care program or a standard basket of services will not be useful or practical because the scope of such an effort will result either in the reduction of advances that have already been achieved in provinces and territories or expectations that exceed the scope and resources of jurisdictions.
We saw this effect in the recent provincial-territorial commitment to home care services in the 10-year health plan, which shifted the resources and funding to specific services focussed on acute home care, acute mental health and palliative home care, and limited valuable resources for health promotion and long-term chronic care. Instead of a uniform set of services, the CHCA believes that each jurisdiction should develop its home care program based on community needs, from the community up, and that the federal leadership should be in the development of common access standards. These access standards should include home care's role in chronic disease management, long-term care and preventive care, in addition to acute care and palliative home care. These standards would also reinforce and establish the importance of home care within an integrated health system and reflect the philosophy of providing the right care at the right time in the right setting.
Within home care, ages 65, 75 and 85 are simply numbers used to separate data amongst senior population, with 65 being the generally accepted threshold that defines the seniors group. There is no home care-specific legislation that ties to any particular age in adulthood. However, funding for medication, assisted devices and some in-home services are often tied to age, with seniors being the largest recipients. Home care allows Canadians of all ages the opportunity to recover or manage their health issues and age in place, surrounded by family, friends and a community that is familiar to them and to which they can continue to make a meaningful contribution. According to Statistics Canada, in 2003, 15 per cent of seniors reported having received home care services in the preceding 12 months, and of the population over 70 years of age, an estimated 38 per cent received home care.
The nature of the home and/or various living arrangements can impact an individual's quality of life. Most Canadians prefer to live independently at home for as long as possible. Recent Canadian and international research suggest that community-based services that are integrated and coordinated across the health care system can be a cost-effective way to maintain people's independence and that it can prevent admissions to hospitals and long-term care facilities. Integrated services for older adults really include these key features: a single entry point to the system, case management, geriatric assessment and a multidisciplinary team, a focus on providing the right services in the right setting to meet the person's and his or her family's needs, the ability to move resources to meet needs, and a focus on helping people remain in their homes and communities.
Home care programs across Canada currently have many of these features in place, such as a single entry point, case management and client-centered services. The challenge we face today and tomorrow is realizing a truly integrated system to meet the senior's needs, and our challenges are in accessing human resources, working in multidisciplinary partnerships with geriatric specialists and other team members, and restrictive home care legislation that limits flexibility in service location and provision.
Currently in Canada, there is an imbalance of resources invested between home and community care and long-term care facilities, with the majority of financial and human resources targeted towards long-term care facilities.
Research into the balance of care in the United Kingdom has led to a decision-making framework by which the appropriate balance of institutional- and community-based care for frail seniors can be determined. In Canada, currently, many jurisdictions are reviewing their parameters for home care and exploring care options that consider total cost and quality of life, not setting of care.
Applying the balance-of-care model in Canada could be instructive to resource allocation decisions with a goal to provide flexible care options based on individual need and community resources, with a goal of supporting individuals to age at home.
A particular challenge to home care service delivery and aging at home are mental health issues, including dementia and depression, which increase with age and can often result in premature institutionalization.
Providing home care services to individuals with behavioural and cognitive challenges is often difficult because of the overall lack of specialized training for home care workers, limitations on community resources and lack of respite programs for the family caregiver.
While there was a commitment to mental health home care in the 10-year plan, the provision was targeted at acute mental health and overlooked the immediate and future need of most jurisdictions to address the long-term mental health needs of clients in an effort to enable individuals to age at home.
The CHCA believes in a need for more dialogue on seniors' mental health and a greater understanding of how these needs relate to the provision of community-based services and the necessary supports to age at home.
Because of physical weaknesses or hazards in their environment, older people are often at risk of injuries from falls. It is estimated that one in three persons over the age of 65 is likely to fall at least once every year. Injuries from falls have a disastrous effect on the health and autonomy of seniors. Falls are directly accountable for 40 per cent of all elderly admissions to nursing homes or long-term care facilities. Falls among seniors can cause long-term disability, chronic pain and lingering fear of falling again. The aftermath of pain or fear from a fall can lead seniors to restrict their activities, which in turn can increase the risk of falling because of muscle weakness, stiffness or loss of coordination or balance. It is interesting that 50 per cent of people with hip fractures never regain their previous level of functioning.
While the health care system typically responds to falls after the fact through treatment of injuries, the Vancouver Island Health Authority home care program is using a primary health care team approach — including home care — that proactively identifies high-risk clients. They provide support for clients who are on multiple medications, which is often a cause for falls, and follow-up with clients to ensure that the goals of aging are in place.
When looking at the supply challenges in home care, we must address both the family caregiver and the formal or paid caregiver. In home care, it is assumed and in fact expected that the family or friends will provide care to supplement the formal service provision.
The family caregiver is indeed the backbone of the home care system, with an estimated 26 per cent of Canadians and 30 per cent of Atlantic Canadians having cared for a family member or close friend with a serious health problem in 2006.
Family caregivers provide a range of tasks, which include looking after family members, providing medications, paying bills, driving to destinations such as doctor's visits, and assisting with lifting and moving. A number of caregivers also provide support with daily assistance to family members in terms of basic hygiene, dressing, bathing, walking, feeding and assistance with the toilet.
Most rely on the home care system to address the needs that are more medical in nature, with only a small percentage of caregivers providing daily assistance such as caring for wounds or providing injections.
While a majority of caregivers say they are looking after family members because they see it as a family responsibility or because they simply choose to do so, there are a significant number who indicate they have taken on this role because there is no one else available or because there is a lack of home care services.
Technology is important for the family caregiver and the paid caregiver. We believe technology can and will play an increasing role in resourcing formal and family caregivers by distant learning, coaching forums and access to professional experts. The senior of the future will be techno-savvy and demand access to information. Many communications companies have identified the home care sector as a growth area, and we believe the federal government can take a leadership in this role.
We also believe that our aging population must play a key role in helping save for their future needs and costs. Canadians are encouraged to plan for their senior years, which are increasingly long, through the Retired Registered Savings Plan. This plan, as you know, shares responsibility with the government and pension plans in order to finance needs for seniors.
We believe that a registered chronic care savings plan with tax benefits and cost-sharing considerations similar to the RRSP would supplement the publicly funded home care systems and allow individuals to share their future needs and contribute to the quality of life.
Approaching an aging population offers many different policy approaches. We believe that an emphasis on health promotion, community housing and community-based services can ensure that seniors will be able to stay and age in the home.
While many of the necessary challenges to support our society to aging placements take place at provincial and local levels, the federal government plays a key role in this exciting future. We recommend that the federal government work with provinces and territories to articulate targets to measure access to home care services.
We believe the federal government should support investment and implementation of technology and innovation; establish a registered chronic care savings plan that will encourage Canadians to plan and save for their future; acknowledge home care contribution through a research body dedicated to home care within an integrated health system; adopt and promote a pan-Canadian caregiver strategy that supports and recognizes the family caregiver; enhance federally funded programs for veterans, RCMP, First Nations and Inuit people to allow them to age in place; and continue to develop policies that address social determinants of health, specifically, promote social cohesion for the senior population in Canada.
Building the health system from the community up coupled with federal leadership demonstrates the value of seniors is essential to preparing for the Canada of the future. Canada must build on its history of respecting and valuing seniors, as the balance tips to a greater concentration of older adults across the country.
Whether young or old, Canadians have the right to life, liberty and security of person. The ability to age in place with a strong care program is essential to supporting these fundamental Canadian rights.
Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association: We have prepared a brief that we will leave behind. Our brief provides further details of today's presentation today, as well as references we hope you will find useful. Our oral presentation highlights from this brief and will include recommendations.
The Canadian Hospice Palliative Care Association, CHPCA, is grateful for the opportunity to present to you today. The CHPCA would also like to take the opportunity to express its appreciation to Senator Carstairs and Senator Keon, who have already completed exceptional work in this area in moving forward the field of hospice palliative care in Canada.
In any discussion related to aging, the issue of health generally, and hospice palliative care specifically, must be addressed, as care at the end of life is a key issue for our society. It is also a key issue for the federal government as it cross-cuts many government departments, such as health, human resources, housing and taxation.
As noted in the Special Senate Committee on Aging's interim report, it is projected that by 2031, about one in four Canadians will be over the age of 65. Natural effects of aging combined with an increase in chronic diseases mean that the majority of Canadian seniors will need access to hospice palliative care programs and services.
The CHPCA is the secretariat of the Quality End-of-Life Care Coalition of Canada, a network of 30 organizations, including the two at the table with us, who support the belief that all Canadians have the right to quality end-of-life care that would allow them to die with dignity, free of pain and surrounded by their loved ones in a setting of their choice. The QELCCC believes that achieving quality end-of-life care for all Canadians requires a well-balanced, sustainable and national approach to palliative and end-of-life care.
More than 259,000 Canadians will die this year. Statistics Canada has projected that the rate of death in Canada will increase by the year 2020 to more than 330,000 deaths, an increase of 33 per cent over 2004. These figures are highly illustrative of the growing need for hospice palliative care programs and services for all Canadians.
For seniors, hospice palliative care programs and services are essentially vital. Considerable evidence exists that older people suffer unnecessarily due to widespread under-assessment and under-treatment of their problems as well as lack of access to hospice palliative care. For example, more than half of all cancers strike people 65 years or older, with over two thirds of cancer deaths in the same age group, yet the largest risk factor for inadequate pain relief is being over the age of 70. Among Canadians 65 or older, approximately 80 per cent have one chronic disease and of those about 70 per cent suffer from two or more chronic diseases.
There is also a higher incidence of complicating factors in the elderly, including prevalence of arthritis, which is limiting function, negative and social economic factors and the lack of advance care planning. Seniors are therefore more likely to have highly complex problems and disabilities necessitating packages of care that require partnership and collaboration between different groups across different settings.
The CHPCA estimates that each death in Canada affects the immediate well-being of five other people, to more than 1.25 million Canadians every year. This includes disruption of living arrangements, loss of income, grief and an increased incidence of illness. An investment in hospice palliative care for one patient pays dividends in protecting the health of those in their circle of friends and family.
Dr. Lawrence Librach, Vice-President, Canadian Hospice Palliative Care Association: In the last century, the advances made in medical care and technology have made living easier but dying harder, and the reality of being elderly is that it is the elderly who die mostly. The system we have now needs to change in order to make end-of-life care a quality time for these patients. Most Canadians with life-threatening illnesses, as we have heard, would prefer to die at home. Nevertheless, 75 per cent continue to die in hospitals and long-term care facilities, and too many patients are dying in intensive care units because of lack of advance care planning. There are many things that can be done to help them. In fact, with some of the premier palliative care programs in Canada, 70 per cent of patients can die at home.
There are many disparities in trying to deliver palliative care across Canada. There are the inequities of access due to remote and rural areas; there are people living with disabilities; there are the home-bound elderly who are poorly housed often, who have difficulty making any access to palliative care; and certainly there are the cultural groups, the elderly who are within certain cultural groups that have a great deal of difficulty accessing hospice palliative care.
The elderly, if they are admitted to long-term care facilities, generally will not receive good quality end-of-life care. Patients who are admitted to long-term care facilities are there to die; they are just giant palliative units.
In 2004, the 10-year plan to strengthen health care talked about the need for home care services, case-management nursing, palliative-specific pharmaceuticals and personal care at the end of life. It is hard today to determine whether we have made significant advances in these areas. I could speak as a home-based palliative care physician, but will not at the moment, but the reality is very different out there.
I should mention that in strengthening health care there is a need for better psycho-social-spiritual care for patients in the community and within hospitals. That does not seem to be the priority, but it should be a priority, because physical care is only one aspect of the care.
Education for future physicians is on its way. We have a project called Educating Future Physicians in Palliative and End-of-Life Care that I direct. It is a joint project of the Association of Faculties of Medicine of Canada. We have all 17 medical schools with local teams and curriculum in undergraduate medicine, and we have developed curriculum and competencies for post-graduate medicine as well. However, in a short four-year project, there is a need to extend the project to evaluate the efficacy of what we have done so far. Also, we have spoken to Health Canada about the possibility of expanding the project to include other health care professions and develop inter-professional education opportunities that will help bring together the teams that will provide the best care.
Michael Aherne will talk about the Pallium Project. That has been a signature project that has developed a wonderful model for inter-professional education. It helps primary care providers — nurses or physicians — learn to do palliative care and learn to be effective in that delivery of palliative care. The Pallium Project has developed a range of educational interventions, but I have to say that education alone will not change physician or nursing behaviour. If the system is not accepting of what will be out there for quality end-of-life care and there are no standards then, in fact, the education becomes unused and will not make the changes that are needed.
There is a need for increased research in end-of-life care. It has not been an area that has been extensively studied. The CIHR has provided funding since 2004, but that funding is due to expire in 2009. We have had some wonderful projects and wonderful network grants, but one of the background issues is that palliative care is not well developed academically and the need to develop that academic piece is needed before we move on to getting effective research. The research has to be broad and go from not only physical needs but to health services delivery.
Many Canadians are not aware of hospice palliative care. Death is still a taboo subject in many areas. The CHPCA and hospice palliative care programs continue to work to increase the level of awareness through things like the Hike for Hospice and National Palliative Care Week, which this year had a theme of advance care planning. There has to be an awareness at the time of illness. Most cancer centres do not have brochures on advance care planning or palliative care, and cancer care continues to be an issue for elderly Canadians. Two thirds of them will die of their disease once it is diagnosed.
Caregiver issues continue to be of concern for the CHPCA, although we do have some employment insurance. The Compassionate Care Benefit was introduced in 2004. It does have limitations. We are asking our informal caregivers to take on a larger burden of care. People are being discharged from hospital very quickly. The home care services are stretched to provide even the acute care that is needed. Elderly spouses, particularly, are having extreme difficulty in meeting the care needs. In our city, we have had actually a decrease in the personal support worker help that is available to elderly clients of the home care services. We need to be able to look at some way of supporting the elderly and the elderly spouses. The Compassionate Care Benefit does not help anyone who is not employed, and therefore there are many exceptions there.
Ms. Baxter: In summary, we have 10 recommendations that you will find in our brief. In the essence of time, I will summarize those recommendations.
We feel that a crucial leadership role exists for the federal government to guide and oversee activities so that quality end-of-life care services are integrated into the health care system, are coordinated with other health systems, are comprehensive in nature and are an effective use of health care dollars. A funded national partnership would provide leadership and vision, standards, best practices and awareness necessary to ensure the provision of quality end-of-life care for all Canadians.
Hospice palliative care issues extend far beyond the arena of health care. They are cross-cutting with many government departments, including health, public health, the Privy Council, HRSDC, Aboriginal affairs, international development and many more. As such, it warrants the national leadership.
The "siloing" effect of the national strategies to date, including chronic disease, cancer, heart health, diabetes, Aboriginal, and they go on, may be counterbalanced with a broadly based strategy or partnership for hospice palliative care. It is one of the areas of commonality between them all; right now, they tend to act alone.
Hospice palliative care can exist as an integrated comprehensive and coordinated system within a funded home- and community health-based system. Effective care reaches into hospitals, patients' homes, nursing homes and residential care homes within the community. The Canadian Hospice Palliative Care Association envisions a scenario where tertiary or specialist care programs and teams will be present in areas where the population warrants and supports it. There is a need for a continued pan-Canadian leadership to ensure continuous training for health care professionals as well as other shared investment-based capacity building. There is a need for continuing interdisciplinary education at the clinical level, including volunteers. There is a need to disseminate and encourage knowledge translation of current funding on hospice palliative care through the CIHR and the need to continue the CHIR funding program into this important area once the funding ends in 2009. There is a need to inform the public on hospice palliative and end-of-life services and programs and to continue awareness of advanced care planning in order to have an open and continued dialogue on death and dying to better serve all Canadians.
Last, dying makes no distinction among social economic strata or employment status. Consequently, caregivers are from all realms of Canada's population. The limited supports available to Canadian caregivers must be extended to include a roster of programs and services that addresses multiple caregiver issues, including the expansion of the Employment Insurance Compassionate Family Care Leave Benefit to allow more Canadians to qualify outside the current EI restrictions, the extension of the current length of the compassionate benefit to be a minimum of 13 weeks and the creation of a national respite program so that caregivers can get the physical and emotional rest they need to care for their dying loved ones, because compassionate leave does not benefit aging seniors unless they are still in the workforce.
We hope this presentation provides you with some new information and that it encourages continued open dialogue. Thank you for allowing us to present today.
The Chairman: Thank you. Mr. Aherne, please proceed.
Michael Aherne, Director, Initiative Development, Pallium Project: Thank you, committee members and Madam Chairman. I appear today not only as a witness, but as one who has borne witness to good, early progress that has been made coast to coast to coast at the community level with federal leadership. Reference to this work is made in the aforementioned CHPCA's brief to the committee. However, I wish to acknowledge the role of the 1995 report of the Special Senate Committee on Euthanasia and Assisted Suicide, entitled Of Life and Death, and its 2000 report, entitled Update of Life and Death, as important Senate work that has informed and guided several programmatic innovations throughout the country. To senators and Senate staff, I want to say that there are those of us who in reading and understanding the focal point in the locus ask how we can do something with that information and what we are doing with it.
I also wish to acknowledge the recent federal investment made by the Primary Health Care Transition Fund in Pallium Project, Phase II. The issue framing of those two Senate reports, in particular, and the catalytic investment in hospice palliative care capacity-building through Health Canada's one-time investment from the PHCTF have been essential building blocks in advancing better care of those with progressive chronic illnesses leading to death and the dying.
In the context of this special committee's work, I will focus this afternoon on the federal role as the fourth area of focus arising out of your Phase I work, with some brief emphasis on the issues of housing and transportation, abuse and neglect, health promotion and prevention, and health care needs. Thematically and rhetorically, I pose the question to the committee: Where is the active management of decline, to assure that Canadians live as well as possible until death, reflected in today's public policy agenda? Clearly, this question is of interest to all Canadians due to the universality and the irreversibility of death as part of the human condition — that is, we are all going to die.
Over the last 100 years or so, we have gone from relatively short lives and short deaths, by way of farming or industrial accidents or infectious diseases such as tuberculosis or polio, to much longer lives and longer deaths, with periods of difficult decline in many instances.
Since 2002 in Canada, we have had a national consensus model of hospice palliative care, which suggests that hospice palliative care is appropriate for any patient or family living with or at risk of developing a life-threatening illness due to any diagnosis, with any prognosis, regardless of age and at any time they have unmet expectations and/or needs and are prepared to accept care.
We also have had in this country a public policy approach to health that, at some times, seems to be underutilized — it is called Population Health — which is generally understood as one which seeks to maintain and improve the health status of the entire population and reduce inequalities in the health status between groups and sub-groups.
Co-locating these general ideas of the active management of decline, Population Health policy tenets and the idea of this model of hospice palliative care as an approach leads me to some specific comments. This is a very broad area — one that we could spend weeks, even months, talking about it.
I will speak to two specific areas of the long death — that is, medically-at-risk driving, for those who have a progressive chronic illness, and health risks for family caregivers, many of whom are seniors but are also adult children of seniors.
Perhaps the most surprising and disconcerting issue that emerged from the 72 strategic initiatives and programming activities within Pallium Project, Phase II, has been the presentation of medically-at-risk driving associated with progressive dementias. The emerging reality is that we have older drivers who are driving more and longer into later life with significantly heightened risk that medical conditions will impair driving. The number of older drivers in Canada will more than double by 2030, with some 25 per cent of those drivers being 65 years of age or older. Transport Canada has projected that casualty rates of drivers aged 65 and over will increase by 200 per cent by 2026. Drivers with cognitive impairment have the greatest risk of an at-fault crash.
I have some data for Ontario put together by colleagues at the University of Alberta for public policy. They are illustrative in part because Ontario is certainly our largest province. In Ontario, in 2000, there were some 1.5 million persons over the age of 65. Just over 1 million of those persons were licensed by the province to drive. The best estimate of the number of those drivers with cognitive impairment was 138,775. Extrapolating from the best peer-reviewed work to date, by 2028 in Ontario it is estimated that there will be 3.2 million persons over the age of 65, with 2.4 million licensed to drive and nearly 346,000 estimated to have a dementia.
Clinicians and provincial driving administrators are currently very poorly equipped to deal with persons and families impacted by cognitively impaired driving associated with a progressive dementia, in particular. The perception rather than the reality is that patients and families often see the primary care physician as the person who has "taken my licence away." Why is this important? This is very important because the clinician-patient and/or clinician-family care relationship is often interrupted over the driving issue at a time when it is most needed to support that family unit toward the decline in death. I certainly cannot begin to share with you the number of tragic stories of intractable family conflict around having to take mom or dad's keys away that I have heard in the last two years in particular. It seems that anywhere I talk about this subject people come up afterwards and we are engaged around it.
This driving issue is the first major public loss on a journey of progressive decline. It is also one that is a useful, practical starting point for focusing other policy and programming issues, including profound implications for housing and caregiving in a society built around the passenger motor vehicle. While I appreciate that the specific administration of licensing drivers is a provincial responsibility, it makes very little sense to have a Canadian Motor Vehicle Safety Act where increasingly the most unsafe element in the equation may be the driver.
I want to briefly note a link to other public safety concerns in hospice palliative care and suggest that there is a federal leadership role to work on these things. I expect that you have heard from experts and studied other referents as well as received briefs about the impact that family caregiving has on the health status of family members. Those are also alluded to in the CHPCA brief.
I would simply like to highlight before the committee that these longer periods of decline are played out in homes and communities. Clearly, there is increased risk of elder abuse and neglect, either deliberately or negligently as linked to caregiver burnout.
I would like to recommend continued federal leadership in national approaches to health care provider training in the areas that I have mentioned. It would also be useful to see, to the extent possible in the current climate, F/P/T initiatives to address public safety and retirement from driving in a way that is dignified. We must recognize that we are entering an age of retirement from driving. It would also be helpful for the RCMP, in their capacity as the major contract policing agency to provinces and territories, to take a leadership role in education and enforcement around the medically-at-risk driver in partnership with other agencies.
Given that the Canadian Home Care Association is also on this panel, I wish to also say that I would like to extend that recommendation around the RCMP to include better education and support for prescription opioid and drug safety in the home, which is becoming a huge issue for both the palliative care and home care communities. If there are questions on this issue, I can address them later.
In light of who is at this panel, I also wish to suggest that the RCMP also has a significant role to provide some leadership at the community level in elder abuse education and enforcement.
Clearly, the issues generated by phase one of the committee's work, namely, in defining "senior" and seniors' diversity and the interface with the progressive decline leading to death warrant continued federal leadership in the area of research, including more cross-disciplinary research and better linkages between researchers in life sciences and the humanities and social sciences. There is a linkage here to what Dr. Librach had to say about that with respect to the psychosocial agenda. I can see opportunities for joint agency initiatives, for example, between the CIHR and the Social Sciences and Humanities Research Council.
In closing, I would like to thank you for the opportunity to come and share these views with you. We are quickly moving beyond first generation of palliation in this country, which is focused on end-stage, end-of-life care issues — that is, the last few days and weeks. Increasingly, with the introduction of the hospice palliative care model of 2002, there is a second generation of palliation that is characterized by the long death and progressive decline, an area that demands federal attention in the context of public health and sustainable public health care delivery.
The Chairman: Thank you very much. If I appear to be a little distracted, I just got an email indicating that my daughter is cancer-free.
Let us begin with some questions. I know there will be a number of them.
Senator Keon: It has been wonderful to see the rapid evolution of palliative care. You alluded to the initial committee that Senator Carstairs and I sat on a number of years ago. At that time, there was almost nothing in the way of palliative care. Ottawa had some, but many cities had none.
It is also wonderful that the evolution has directed palliative care to the community. Initially, certainly most of us in our early careers were unable to think beyond the institutional level for health care of any kind. That was a terrible mistake. It meant that we lagged behind in getting community resources in place. You represent a very nice cross-section of what can be done to integrate a community and provide a support that is necessary for palliative care, which I think is an excellent focal point.
Let me bring you now to the Achilles heel of the situation. I invite all of you to comment on it.
You have your pockets of expertise, and so forth, and you have remarkable integration and continuity of your programs. It seems to me that there still is no focal point at the community level to plan, particularly the development of personnel. It is true, thanks to Senator Carstairs and palliative care physicians across the country, that we put this on the curriculum of the medical schools and with nursing, and so on.
There is no question that someone even as far removed from it all as I am can see that we really do not have the numbers at all in the way of primary care physicians, palliative care specialists, palliative care nurses, and allied health professionals, who can provide the person power at a more reasonable cost. We just do not have the teams of people that are really necessary to do the job that you all know you can do.
Let us start with you, Ms. Henningsen, since you went first, and go across and talk about what is necessary. Forget about facilities for the time being. What is necessary in the way of personnel development, educational programs and recruitment? Do not think about what governments can afford for now because, whether they like it or not, they will have to provide about twice as many primary care people as are in the system now. Just go across and talk about what is needed to put these teams together.
Ms. Henningsen: There has been a lot of development in palliative care from a community base right across Canada. In particular for human resources, we find that there have been a lot of training programs and initiatives but they have been applied in silos. We have trained nurses as a group of nurses. We have trained home support workers in palliative care, but as a group of home support workers.
One of the areas where we certainly see opportunity, and there are some models currently happening, is training groups together — training the home support worker, the palliative care physician, the family caregiver and the nurse all together, training them not necessarily on the hand-on duties of how to provide good palliative care but training them in how to work together, how to ensure that they do not duplicate services, providing opportunities for communication so you start to build a strong partnership with all the health human resources.
We have found, under the chronic disease management portfolio, some very good progress we did not apply to palliative care, but it is a good application that you could apply. Stop training in silos. Look at partnerships and real team work to reduce duplication.
Senator Keon: Are you referring to the Public Health Agency of Canada's Chronic Disease initiative, or another one?
Ms. Henningsen: It was funded through the Primary Health Care Transition Fund, where home care groups aligned with family physicians and started to understand. At first, they did not speak with each other. At the end of the project, they did joint decision making, which was exciting. They started to see the value of all the resources and worked together as team. It is getting people together and understanding each other.
Senator Keon: What have you to say about the continuation of the Primary Health Care Transition Fund? They have had some progress, but obviously the kind of developments we need at the community level have not begun to occur, even though they have done good work and things are happening. What do you see that is needed at the community level? Let us just talk about keeping this fund alive and building it to where it should be.
Ms. Henningsen: We were involved in this partnership project, and one area we focused on is sustainability. When we started the project, we had 16 family physicians, and now there are 161 family physicians in the Southern Ontario area all working in this partnership. There is a mirror image in the Calgary region, too. Sustainability, if you integrate it into the system, can happen, because the people in the system see the value.
Our biggest disappointment with the project was that it was such a basic approach, but we cannot share it with anyone else because there is no more funding. The ability to be able to have some federal support to take those principles and share them with, say, Edmonton or B.C., and show them the tools that were developed would be good sustainability for momentum in building partnerships.
Ms. Baxter: The EFPPEC project Dr. Librach referred to was funded by the Health Transition Fund at Health Canada. It got funded because it was a way of looking at education in an interdisciplinary manner, with the hope that eventually practitioners and clinicians would work in an interdisciplinary manner. The hospice palliative care came from that model. We work in an interdisciplinary practice mode, and education was following up. We went to visit them recently, and they are looking at how you educate health care providers in this manner. We have been saying that hospice palliative care is an example of how you could do it. We have been advocating for that.
We have tertiary model teams, like the one that Dr. Librach works at, in Toronto, and they are in most of the big centres. How do we help Canadians die in place and get the right services? Obviously we need to look at a primary health care model.
One thing we said was that a physician coming out of school always delivered a baby but never saw anybody die. Why is death the ultimate failure? It should not be. We need to start looking at our thinking around some of these pieces.
We are lacking some vision, some continual funding and some emphasis on these things. The project that Mr. Aherne worked on from the Primary Health Care Transition Fund was phenomenal, but it is gone and finished. How do you provide legacy for those pieces of work? Ms. Henningsen talked about one of Mr. Aherne's projects that actually went across the country, predominantly in the western provinces but right across, and looked at health care providers and trained them in an interdisciplinary model. If you look at the saturation point, we hardly even touched health care providers, and the money is finished. Mr. Aherne will have to speak to that marvellous training program. It hardly even got out there.
We actually know what needs to be done. We need some funding and some commitment to get out there. We need to talk to all those health care providers that are not working in end-of-life care, because they are key to assessing and referring. They will be providing those services in rural and remote areas because we will not have specialists in every city and town.
Dr. Librach: There are many issues around the shortage of personnel. That is well documented. There are a number of issues within the community setting, and I will speak to that because the program that I come from has 600 patients in the community on a daily basis, so we understand the issues. There is a shortage of nurses in the community. That is partly because nurses in the community generally are paid often a third to a quarter less than nurses in the hospital. I do not think there would be any difficulty in recruiting nurses to do better palliative care in the community — but, for instance, in Ontario, with the RFP way that nursing is hired, and the agencies, the nurses recently were told they had to do 14 to 15 home visits a day. In a palliative care patient, that means you have time to go, do blood pressure and pulse, and leave. I do not think there would be any shortages if we had an appropriate health services delivery model that would support that.
Advance practice nurses are not paid for in the community to the extent they should be. In the American system, they have 10 times the number of advance practice nurses compared to what we have in Canada per nursing population. Very few schools offer certificate or master's courses in palliative care or advance practice nurses courses. We have just hired two in Toronto Central, and they are being assigned desk jobs. The reality is that they need to be out there in the community.
There is dissonance around talking about team work and actually supporting that in the community. Home care agencies in Ontario, and recently I spoke to people in Saskatchewan, have decided that every health care provider in the community shall be a palliative care provider, so they have dismantled palliative care teams and we are left hanging. There is a dissonance there.
With respect to psycho-social issues, the government is saying that any physician or nurse can deal with the psycho-social issues at end of life, and I am saying nonsense. We are not prepared or educated to do that. There are very few social workers, psychologists or spiritual care workers available to support patients in the community. That is another issue of a shortage of personnel, which is a matter of dollars. The health care dollars for home care in the province of Ontario have not changed at all in 10 years. Dollars have gone up, but it is still less than 4 per cent of the overall health care budget. The number of home care clients has gone up by 30 to 40 percent in the last two years alone. We just cannot continue in that way.
Finally, just a word about the Primary Health Care Transition Fund. I was a recipient of a grant that went a year and a half and was around tele-home care. The problem with those grants is that we were just getting started when we had to finish, and there was no sustainability. Now I have a quarter of a million dollars worth of equipment that is going out of date very quickly and will never be used because there was never any integration into the system and no money for continuation. That was lacking. It was wonderful, but most of the projects in Toronto and the areas have just stopped because there has been no sense of continuing them on.
Senator Keon: Were you able to get some federal-provincial conversion from your grant to get the province to pick up the operating costs?
Dr. Librach: No, and part of the reason is the technology. The technological promise is not yet there. We cannot do it. Although it could be done in rural areas in Prince Edward Island, because they have good telephone lines, when we went into Toronto we had all sorts of problems and ended up putting DSL lines in every patient's home. It was cost-effective, and we have shown that, but there has been no uptake provincially despite the emphasis on technology.
Senator Keon: I want to move to the training of personnel. I was 32 years old when I started to draw a paycheque. Thank God my wife was a teacher, so I did not starve. It seems to me that we are overdoing it, and I used to preach this at the Royal College, in which I was very active throughout my career. We have to get the young people to decide what they want to be and get them into their training early. We have to cut the clinical training programs, because it does not make sense.
This is true not only in the medical profession where some people spend 10 years training. Nurses graduate with a B.Sc. from a university or from a community college with four years training. Some of them then decide they want to do a master's degree or a Ph.D. That is fine and necessary. We need that for research, et cetera, but it seems to me that for the people in the trenches there has not been enough thought given to the kind of person you want upfront in the trenches and to trying to train them early so that they are not wasting years of their life to gain the necessary knowledge to deal with people appropriately.
How can that be addressed and turned around? We are still nailing it onto the back end.
Dr. Librach: I will speak to medicine and then to the other professions. In medicine, we have identified the competencies that we would like, so every physician needs to be educated to a certain level. Becoming a microbiologist with no clinical responsibilities will not be helpful to that person, but everyone in clinical practice will encounter dying patients. The idea is to have both undergraduate and post-graduate training, and they need to go into an environment that values quality end-of-life care. We are starting to see the results of that. Things have changed.
The same is true with other professionals. The issue of the 91 nursing schools comes into the extension of EFPPEC. How can that be brought in? Ms. Henningsen spoke about team work. We do not educate people together. We have a one-week inter-professional pain education program at the University of Toronto that involves 800 students of physical therapy, occupational therapy, social work, dentistry and pharmacy. That is the only opportunity for inter-professional education that the students will have in four years.
When we were developing our undergraduate curriculum for EFPPEC, we developed a nation-wide consensus. Ninety-five per cent of the responders said that almost all of competences should be taught in some form in an inter-professional manner. We now have the opportunity to move that ahead.
Palliative care is a relatively small and well-defined area. I think we can do that. I am optimistic that we can move things ahead, but it will not help if there is no system to support that. This is something that CHPCA, through its advocacy, has to help with. As well, we need more partnerships with cancer groups, Alzheimer's groups and others, as well as the home care agencies, in order to put that together. I have been in palliative care for 30 years. In the last 10 years, I have seen major changes, and I believe that we are on the cusp of some major changes educationally. I am optimistic.
Senator Keon: The old saying about pilot projects is that when the pilot dies, the plane crashes. What recommendation can we make to avoid this?
Mr. Aherne: I will make a couple of contextual statements around leadership and capacity and then make a specific comment about the Primary Health Care Transition Fund.
In terms of personnel issues, I believe there are still many people in significant decision-making roles in the health delivery systems who do not understand what quality end-of-life care and hospice palliative care is about. I also believe many of them have the perception that palliative care is for only the last few days of life. They have little appreciation that we have powerful painkilling drugs in the tool kit. They have little appreciation for the fact that there are very well-defined palliative assessment processes that must be done to do this work well. That is why we hear comments such as, "It's palliative care; anybody can do it." With my apologies to the homecare community, they believe that they can ship these patients off to any home care nurse, and that is simply not the case, although it is the case if there is proper front-end work done with good assessments and if there is a good management plan.
We have two big problems that we have yet to crack. One is continuity of care across four or five settings of care. Those are home, hospice, hospital, long-term continuing care and settings of marginalization such as street shelters. In the federal sense, I would even suggest First Nations reserves.
The second part of that is case coordination. How do you manage this? It is more than the personnel training issue; it is a capacity management issue.
I really do believe it is rooted in the leadership issue. In this country, our system evolved — it evolved to treat the farmer who got his leg chopped off in a combine or an auger. It reacts to emergency and deals with trauma and episodic care.
We are now trying to determine how to transform the legacy delivery systems to deal with the new reality of an aging population and people living longer with chronic illness. There is that leadership imperative.
We need to do more with regard to capacity. A physician leader from Saskatchewan said that the Primary Health Care Transition Fund was set up in the summer fallow model. Fields used to be planted and then taken out of production for a while. We now live in the age of continuous crop rotation. Bringing that metaphor over to health care professionals, we have foreign trained nurses and physicians regularly rotating through rural and urban settings, and there is not a lot of continuity. To provide the kind of care we are talking about requires a fair amount of stability in terms of some local champions. Those local champions can be and often are registered nurses who are in the community for a long time.
The best example of that may be in Manitoba where, since 1999, the province has designated funding for a regional palliative care coordinator who organizes the work and deals with all the issues we have talked about.
We do need to do more. Ontario and Alberta have the family health team model and the emerging primary health care network, and some of the community infrastructure at the primary care level can be helpful with that.
We went into the Primary Health Care Transition Fund as the only nationally funded palliative care-related project with our eyes wide open and a sincere commitment to deal with that as a one-time investment.
We have built a system of personnel to embed leaders throughout the four Western provinces, the Yukon Territory in particular, with a different model in Nunavut. We created a suite of resources with a model being distributed through the CHPCA that went beyond the life of the PHCTF.
With respect to the idea of continuous crop, we need to do this kind of work on a continuous basis. It is important to note that Dr. Librach talked about the personnel-shortage issues. In some regions, we are seeing senior leaders who are starting to realize the value of this work. Now they want to send staff for training, and they are finding they cannot get relief for staff. We now need to think about innovations that allow us to support workplace learning. How do we create opportunities for shorter quality learning to happen in the workplace, which supports not only the licensed or regulated health care professionals but the entire range of personnel?
At the community level, we need to do a better job of integrating the voluntary sector or the non-governmental organizations with the health care team. A colleague, Mary Lou Kelley from Lakehead University, uses the metaphor of this is the tail end-of-life version of what we went through with midwifery. I have personally seen this, and I think we are contributing to it in part. We run the risk of medicallizing dying if we continue without community and medical supports.
Dr. Librach alluded to that around psycho-social supports, but it is not just about more training for health care professionals. It requires a better balanced capacity in the community to deal not just with how we work through the formal health care delivery system, but how we actually celebrate living and dying as a community experience. When we need good pain-and-symptom management in place, do we know we have that as part of an entire package of supports we can develop in our community?
The Chairman: Before turning to Senator Cordy, I was struck because I received an email 10 days ago from a friend whose father-in-law died. Several weeks before he died, she asked about palliative care for him and was informed by the physician that he did not give up on his patients. This is in a city where, quite frankly, we have high-quality delivery of palliative care at several of our hospitals, but in another one of those hospitals they do not apparently believe in palliative care.
Senator Cordy: Ms. Henningsen, I know you had to rush a bit toward the end of your presentation. You spoke about having to look into the field of technology with tele-home care, telemedicine, et cetera. I see good aspects to that because we do not have enough medical personnel. There is a shortage in all fields of medicine.
However, I see also see some of the downsides, particularly dealing with seniors, in that many times the person who knocks on the door is the only contact they have with an outsider during the week. Could you expand on that?
Ms. Henningsen: We believe that technology can help seniors be more independent in their homes. For example, there is one technology system looking to roll out right now where it started as a security system. They are wireless security indicators. If someone broke into your home, it would go off. Instead of someone breaking into your home, they could set up security sensors in strategic locations to ensure the senior who wants to be independent and live on their own opens their bedroom door every morning. If that does not happen, a home care service provider will be alerted to get someone there ASAP.
Therefore, it can help increase independence, but I do not think it can take the place of the people interaction. It will help to expand resources. It will certainly allow a senior to decide in his or her home rather than having to go into a long-term care facility just because the individual is on his or her own. I think the home and community care programs have to surround that technology.
Just to pick up on Mr. Aherne's comment about it not being necessarily the formal home care programs that need to be there, we need to start to integrate and look at the community and the community resources, whether it be the neighbour, the community centre or some sort of resource that can surround that independent senior in their home,
There is neat application of technology that we can use. It is now in development.
Senator Cordy: I certainly understand that. It would certainly create independence for a longer period of time.
I should like to have more information about the Pallium Project and how it was initiated. I know you talked about some of the things you are doing in your project, but I am not sure how it got started.
Mr. Aherne: Back in 1999-00, a physician colleague of ours, Dr. José Perreira, who has since left the country for Switzerland, was a foreign trained doctor from South Africa. He had an experience while practising in rural Manitoba that left him completely without the tool kit in the early 1990s to deal with these issues with a young gentleman in his 40s. He had terminal cancer and was in extreme pain. Through a variety of events, he ended up going into a palliative care medicine as an academic discipline and became a respected colleague in the country doing that.
In 2000, I was working at the University of Alberta in professional development, he was working at the University of Alberta in palliative medicine, and we recognized a need for rural and remote primary care professionals to have access to tools that they otherwise would not have to support dying in the community. It ended up being opportunistic in terms of a contribution agreement application to what at that time was another one-time investment, the rural and remote health innovations initiatives.
That was the demonstration or the pilot. With the PHCTF investment, we ramped up from that initial proof of concept. That is how it started.
In that instance, one foreign-trained doctor took something he was concerned about and linked with other people who could help him further develop that.
Senator Cordy: Does it work as a focus point for all people in the western provinces and in the North who are working in the field of palliative care?
Mr. Aherne: In the literature, it is called a community of practice. It is based on the idea that many hands make light work. We know there is a range of needs out there, and we know that people have regular operational or program accountabilities paid for generally by the provinces or the territories. They know there would be benefit in doing these other things — building resources, building tools and building standards-based or consensus-based curricula — but it is too much to do on their own.
They feel that, with resources, investment and coordination, together they can do it. That is the overarching idea. In the last phase, there were 72 identifiable initiatives. For example, one of those 72 initiatives was a regional weekend course program where we went to the integrated health authorities throughout Western Canada and did a three-day training with rural doctors, nurses and pharmacists using this Learning Essential Approaches to Palliative & End-of-Life Care, LEAP, course, which has since been carried over to the 17 medical schools for use as they see fit. What is remedial for today's practising primary care professional, in a lot of cases, is foundational for tomorrow's.
Senator Cordy: I see that the voluntary sector is also involved, in addition to medical personnel, health authorities and the university sector. From the voluntary sector, do you find out what the gaps are within the voluntary sector? Is that part of it?
Mr. Aherne: Typically, you have in some provinces and in the country parallel systems of delivery, where you have the voluntary sector — through the hospice movement — who have licensed physicians and other health care professionals working with them as a model of delivery.
Senator Cordy: Have other areas, such as the Atlantic region, Ontario and Quebec, looked at your model?
Mr. Aherne: We work with them but it is mostly a bottom-up model.
Ms. Baxter: The LEAP model has had limited play in Atlantic Canada at the end of the project. The primary health care funded project was predominantly in the West and North, although we did do some work outside. We hope to roll it out across the country; we are looking for funders and looking at how to do that.
I think it is a marvellous program. We have valuable information from the first one, the Pallium piece. It is part of our legacy, the piece for the Pallium Project, which the CHPCA is distributing and selling, trying to get it out there and get some uptake. It is a slow process when you do not have the funding in the plan. We are working on that now.
All of the 72 projects that Pallium did are marvellous. However, the LEAP project has some real legs to get out there and do some great training across the country, and we would like to do that.
Dr. Librach: Ontario is the only province that has separated hospice and palliative care, where hospice is community volunteer hospices, perhaps with some beds but often without medical or nursing support to any great extent. Palliative care programs are the professional programs, very few of which have volunteers associated with them. Therefore, there is a disconnect in our community.
There is also concern among the palliative care community in Ontario, as well as within the community volunteer hospices, that the Ontario government may be looking on volunteers as substitutes for professional care providers. There is a risk there. We love working with volunteers — they are additive and complementary to what we do. However, the minister announced 19 residential hospices it would fund and it is only funding one third of the costs of a residential hospice, which means you still have to raise money. Also, they do not fund any palliative care units, although there are now 28 of them in Ontario. Therefore, the reality is very different.
We have to be careful around seeing the volunteers as substitutes for health care professionals. They are both needed and they both need to be educated together and understand each other's role and work in a complementary fashion.
Ms. Baxter: I would like to add something that has come up in the last few months that is of concern. Some of the provincial governments have attributed a dollar to the caregivers — that they are a free part of the health care system but that they are a part of it. We have to be careful about what we attribute to family and friend caregivers in a coordinated way.
If people have family around them to help them out at this time, that is great; but if we attribute it to part of the health care system, then people who do not have it fall back. We are assuming they are a key part of the health care system that may not actually be there if they are seniors living in isolation or whatnot. In talking about volunteers as part of the health care system, actually the provinces and territories are moving toward counting on families and caregivers to be a key contributor.
A lot of times they want to be and they are, but I really worry if we make them a formal part of the health care system. Then they take on roles, but if they are not available, what happens? We need to take a look at how we are going to do that with the senior population in the next 20 years.
Ms. Henningsen: In rural and remote communities, often the young have gone to the urban centres. Therefore, it is either seniors looking after seniors or seniors there with no one. To count on a family caregiver is a precarious plan for future health care.
Ms. Baxter: I was in the U.K. last week talking about a number of things, one of which was the aging population in the U.K. Their demographics are a little older than Canada's, but not much.
They have a lot of council flats and seniors' housing. They have young seniors — 65 to 75 or 80 — who are fairly healthy seniors living with some seniors in declining health. We talked to them about looking at a housing model where you can get the young, healthier seniors helping to care for the older ones, especially in areas where the seniors might be isolated from their families. There are all sorts of different models that we need to think about in the next 20 years because it is the only way to make some of these things happen for these senior citizens.
Mr. Aherne: I did not want to skirt your question about Atlantic Canada and Ontario and Quebec, but I will say that one of the things that played out in the first five years of the Pallium Project is that people in Western Canada really understood. There was almost a cultural ethos around if you want to build a barn, you have to get together and do it. People did that — not to say that has not happened elsewhere; we have a strong history of community development in Atlantic Canada.
I am still reflecting on the dynamics of what some of these things are, but I think there were some things where the resources and timing was right; people were ready to mobilize. I do not know that the Pallium Project in that community-of-practice model is necessarily the way I would continue it, but there are certainly things that we need to do to work together across the country.
I would suggest that there are opportunities for federal leadership in continuing innovation and investing in innovation. I do not know that I have completely answered Senator Keon's question about the Primary Health Care Transition Fund. The one thing about one-time investments is that it makes you focus and get things done. The downside is if you are dealing with this area where there are a lot of health care delivery components to it, then how do you affect the transfer to the provinces and territories effectively? Otherwise, things just run out.
I do not know the answers. People at pay grades well above mine do not understand those things either, but we need to continue working on them. It would be beneficial, as we have this changing society, to have continued investment in innovation — and have it recognize that with pieces that support the diffusion and adoption of that so it informs and transforms program and service delivery.
Senator Cordy: We talked a lot about caregivers and I would like to turn now to the compassionate care benefit. I was on the Standing Senate Committee on Social Affairs, Science and Technology and that was one of our recommendations, which came from one of our colleagues, Senator Carstairs, who had appeared before our committee. It was one thing that was very much requested from the palliative care community.
I thought at the time, and I still believe, that it is a wonderful wedge so that people start realizing we have to do things like having the care benefit. However, the reality is that the uptake on that program has not been as high as I would have predicted at the time. I wonder what changes we should make to that program so that more people are involved in it.
I look at it from a personal perspective, which is that you have to admit that the person that you are caring for is dying. My father had leukemia and was in and out of the hospitals many times. I would never have written down on paper that my father, at that point in time, was going to die so that I could receive the compassionate care benefit. I wonder if there are a lot of people like me, which might be one of the reasons for the low uptake? How we should work with that program so that it becomes better utilized by Canadians?
Ms. Baxter: We are on our third research evaluative project on this issue, and I sit as a principal investigator. It was disappointing that fewer than 5,000 people took advantage of the program in its first year. It was incredibly badly marketed by HRSDC, such that no one knew about it even though the hospice palliative care community talked about it and we wrote articles about it to try to engage the community. We were only a small component of it and that was part of the initial frustration. There were three big problems with the program, but I must say we are highly appreciative that we even have the program. I do not want to sound hyper-critical. The first problem was its narrow focus on parent, child or spouse. In April 2006, that was altered with the additional category of anyone that you deemed to be family. That was a marvellous change and we are thankful for it. We had written numerous letters on that issue before the change.
The other two problems are that the program is EI-based. When HRSDC and others looked at how many Canadians would take advantage of it, it was based on inaccurate estimates of the numbers. I believe they said that possibly 168,000 Canadians would take advantage of the program. They miscalculated because of the number of Canadians that no longer pay into EI benefits. At one time, HRSDC said that 85 per cent of adult Canadians pay EI premiums, but I am sure it is not even close to that number because of the many who are self-employed, which opts them out of that program.
As well, the time frame of six weeks is an issue, although the program is eight weeks in length. As you said, senator, the big question is when a person should take advantage of the program. Some of it comes down to the dialogue between patients, families and health care providers to let them know the best time to take advantage of it. None of us ever knows when death will come. If you have that open dialogue with the health care provider, you might have a better idea when to take advantage of the program. Systemic issues with the program could be corrected. We need to look at it as more of a CPP-type program or open it up so that it is non-EI based.
The other problem with the program is that we need to market it. Government has produced a pamphlet, and we have sent thousands and thousands of them across the country. We are hopeful to get the information to people about the program because we are aware that, if the program is not used, we might lose it.
Having said that, the Compassionate Care Benefit is not the be all and end all. Canadian families are diverse in the way they look at these things. Both the $10,000 tax credit and the compassionate leave program would benefit Canadians who work and have income. What about seniors who no longer work? We are talking about a roster of programs for caregivers, knowing that some families will take advantage of one or two. We need at least something to provide support, and that is where this national respite program would benefit seniors. We have not identified what they might look like and we have not done much consulting, but we are hearing from Canadian families that we need to look at a number of things and that one program will never be it for all Canadian families but it does meet the needs of Canadian families.
I am surprised. I was in New Brunswick giving a talk about two months ago in a room of almost 100 people, and two thirds of them had never heard of the compassionate leave program. I was stunned. We need to do a better job of marketing.
Senator Cordy: You have given this a little thought.
Senator Murray: With regard to the federal role, in both home care and palliative care, your presentations spoke to such things as leadership, developing common access standards, guiding and overseeing and integrating palliative care into the national health care system. I understand then that you are not suggesting the federal government do this by bringing down the hammer, by imposing standards or by amending the Canada Health Act.
One of the briefs refers to current national strategies, by which you mean federal-provincial-territorial strategies with respect to chronic disease — cancer, heart health, diabetes, et cetera, Am I correct in concluding from this that there is no such strategy, either with regard to home care or palliative care?
Ms. Baxter: We had a program called the National Strategy.
Senator Murray: Excuse me, I am talking about a federal-provincial-territorial government level of strategy.
Ms. Baxter: It did not engage the provinces and territories well and we are not using it because it is over. We need to think of it in terms of a government partnership of all levels, and the cancer partnership is a good example. As you will see in the brief, there is an FPTC, including a community response to the issue which I think is key.
We are hoping for, and would like to see, multiple partnerships. The community can do only so much and the federal government can do only so much. We need to work together on this because the issue crosses all ages, diseases, professions — every Canadian will die — even though we think we will not die. The only unknown is when we will die. We need to engage all four levels of government. We are committed to trying to make that happen over time because it will take a big commitment.
Senator Murray: Ms. Henningsen, has anyone designed the registered chronic care savings plan mentioned in your brief?
Ms. Henningsen: No, they have not designed it.
Senator Murray: It is just a gleam in your eye.
Ms. Henningsen: Baby boomers feel strongly about aging and taking on more responsibility for their health. If the government could come in as a partner with us, not through the Registered Retirement Savings Plan, because that is for my home and day-to-day living — I do not consider an RRSP for my health. As we age, we do not realize that the services are not in place. We tend to think that when we need the services they will be in place. From the home care point of view, the first thing to be cut is support services, the homemaking services, and the services you need to be able to age in place or at home, to make the difference. They are not big expenditures but those services are not in place. If we can start, in partnership with the government, to save early and for our health care, Canadians would buy into that.
Senator Murray: You should ask tax experts to design the program. It would be interesting to see what they come up with. As you know, with the RRSP, there is a tax incentive to contribute to your own RSP but it is taxable when you begin to withdraw. I do not know whether that could work in the case of a chronic care savings plan.
Dr. Librach: There are insurance policies because the insurers have begun to look into policies for chronic care. After-tax income is used to pay for them and they will support a certain amount of caregiving in the home, in hospital or in long-term care facilities. It is relatively expensive now. Certainly, having some kind of federal initiative might support a private-public kind of partnership in this way. It is selling reasonably well, but usually to people who can afford it.
Ms. Baxter: In the last budget, the Conservatives put out the savings plan for parents of disabled children. We had had some dialogue with the government around whether this would be a good vehicle for care giving. At first look at it, we said possibly, but our concern was around equitable access. You can maybe tell I am a social worker by training, but when the middle class can afford to save for this and the working class and the lower-income earners cannot save for those programs, do they get the same service at the end of the day? My grandmother is 92 and living with Alzheimer's in a nursing home, and we pay for her care because we can afford to, and that is not a problem. I take great satisfaction in knowing that the room next door to her is a subsidized room for someone who cannot afford it. Some of these innovative programs are likely the way to go over the long term, but we need to have our eyes open so we do not create a system of inequitable access for those who cannot afford it at the end of the day. That is the only caution. A lot of creative thought can put be into some of this.
Senator Murray: Ms. Henningsen, what are the shortcomings in the present federally funded home care programs for veterans, RCMP employees, First Nations and Inuit people that need to be enhanced?
Ms. Henningsen: The veterans program is quite rich and enhanced. It is probably a model that we should look at for all provincial and territorial programs.
For First Nations and Inuit, we have had a chance to work more closely with them over the last two years. Their funding has not changed in 10 years, although their increase in demand has changed. The need for more chronic care management in the home and community has changed. Their program started as an acute care home care program, and that is not what they are doing. They are doing palliative care and respite now. The services provided on reserves and in the northern territories are minimal. That is something in which I think the federal government could show leadership, looking at aging in place or at home with their own programs. Look at the veterans program, and roll it out to the First Nations and Inuit.
Ms. Baxter: The CHPCA and the Canadian Home Care Association put out gold standards in palliative home care about six months ago. Our first look was at provincial-territorial governments, because that is where we were going to roll it out. In retrospect, after we rolled it out, we thought the federal government, particularly around the provision of service for Aboriginal people, needs to look at it and try to meet the standards. One thing our associations are looking for in the next while is to say, "Here, we have set out national gold standards on palliative home care for the provincial and territorial governments, but the federal government has people they are responsible for too so they need to look at meeting that standard, or getting as close to it as possible. They are not right now in many of the reserves and for many Aboriginal people." That is something on which we are working with the government.
Senator Murray: That reminds me that when Mr. Aherne was talking about programs in various places he said there was a different program for Nunavut. Was that a cultural aspect or jurisdictional issue?
Mr. Aherne: It was related to delivery. The way we work with primary health care teams is to involve physicians in the mix. In Nunavut, there are very few, comparatively speaking, physicians in the 25 or so remote communities, and they have a territorial home care program with fairly highly skilled home care RNs. We work directly with the home care RNs from those various remote communities through a hub in Iqaluit to provide support and training and so forth. It has more to do with the availability of how they deliver care.
Since you opened the floor to Nunavut, let me speak to that. It is hard to provide quality end-of-life care to somebody in a home when they do not have the kinds of housing conditions they need to support that.
The Chairman: I do not want to put anybody on the spot, but I suspect I might be. My question has to do with what is happening with the end-of-life care secretariat in the Department of Health. What is happening with the working groups? What is happening with the strategy that supposedly was to be engaged in with the provinces and the territories?
Ms. Baxter: As the last and past co-chair of the working groups, I will answer that question. The actual strategy ended at the end of March, although we are not calling it a strategy per se. The working groups have all been thanked and let go and dismissed, so that infrastructure of working groups is gone.
Having said that, the people that worked in Health Canada under the Secretariat on Palliative and End-of-Life Care are still there, and they are in a period of evaluation. I am paraphrasing what they have been telling me. They are looking at what has happened over the last five years, which I think is a good thing. In that time, all of us who work in the Quality End-of-Life Care Coalition of Canada and any of our groups are trying to reformulate what we could see as the future plan, which is looking at a partnership in a new creative way.
Looking back, there were three pillars of the strategy. One was a community component, and that is one I was engaged in. I think we did a good job, and there is still work to be done. You could argue whether we could give you another work plan for another three to five years. I think there has been phenomenal work done.
Of the other so-called pillars of the strategy, one was to engage interdepartmentally across the federal government. The question is best asked to Health Canada, but my observation is that they did not engage cross-departmentally as they could have. They have in Veterans Affairs. I met recently with the Veterans Affairs Canada, and they are doing great work, but I think we could debate Corrections and Privy Council being cross-governmental. There is a lot more work to be done.
The third pillar was the federal-provincial-territorial piece. As far as I am concerned, that is a non-starter under the strategy. There were one or two meetings over the five years where they tried to engage the provinces and territories. Having said that, when we had our national meetings once a year, some provinces presented on what they were doing, so there is a willingness on the provincial and territorial part to work together on some of these issues. We saw it in the 2004 health accord, where we got a federal-provincial-territorial commitment. There is an excitement over the issue and a commitment to try to work together on it. Unfortunately, I do not think it got to where it could have under the strategy.
We are not using that word any more, and we are looking to the future to say, "How do we engage the provincial, territorial, community and federal government to do something on this issue?" It crosses diseases, ages and professions in all those strategies and those things that the federal, provincial and territorial governments are trying to do. We need to try to figure it out and have a go-forward plan.
The Quality End-of-Life Care Coalition of Canada is in the process of signing off on a framework document that we will happily provide to your committee in the next two weeks.
The Chairman: I know, Dr. Librach, you want to get into this, but I would like to know what happened to the work of the working groups. I know the education working group was getting ready to do a major public relations piece in terms of palliative care and end-of-life directives and that type of thing. What has happened to that work?
Ms. Baxter: I co-chaired the PIA. The work on public information awareness has just died.
We funded a $150,000 national framework to do a public awareness campaign. My organization is using it to look at it, but we are searching out private funding sources to do that. We have not been successful to date, but are hopeful for the future. The work of that committee is pretty well finished. Some of the other committees have a bit more of a legacy and, Dr. Librach, why do you not talk about professional education?
Dr. Librach: I should take off my CHPCA hat and talk as a member of the education working group. I am very angry about the fact that our work was cut short. The only legacy is EFPPEC and now this effort to try to find a way to extend. Our work was beyond professional education. It looked at how policemen and firemen needed to be educated, how the public needed to be educated.
We have done some ground-breaking work that has been totally, over the last two years in particular, just stifled. There were good people in the secretariat, but no money. You go to a meeting and they say they cannot offer coffee any more. The fact that I was taking five to 10 days out of my busy practice to come to meetings as well as doing hundreds of hours of working on this for nothing and see it all suddenly cut short is very distressing. Some of us will pick up on some of this — but there was a unity of approach there. I do a fair bit of consulting work in the States on education and they were in awe that we were doing things, but they will take some of the work and pull it forward as the Americans have that sort of "just do it" philosophy.
I am sorry it stopped. There were amazing things that could have been done in education and to have it removed the way it was — I got a very nice plaque, and I actually got dinner, which I was told was not in the cards but they were going to give us dinner anyway. The reality is that those of us on the committee were just feeling that we had something under our belts that we could work further — and unless they come up with something else it will be five years' worth of work that will not bear fruit except for projects like EFPPEC and Pallium. It was an inter-professional working group including volunteers and some great stuff. It stopped.
The Chairman: Was that the same for the surveillance committee and the same for the other committees as well?
Ms. Baxter: For surveillance, I think that it likely lost what little steam it had. To do good surveillance you need a fair amount of money, and there was only $40,000 to $50,000 a year. They got together and tried to look at integrating it in other ways, but it has pretty well stopped.
In regard to the research committee, because they have the CIHR-funded projects for two more years, it is motoring away, and we are hopeful that by the fall we will get some interim knowledge translation results. Again, though, without direction and feedback, what happens two years from now when that CIHR fund is finished? They are still working and finding the ways.
We will speak a little bit around the best practices, although I did not sit on that committee. There was some phenomenal work done on that committee. They took the bulk of the funding, looked at best practices and did some phenomenal work, but not all the work was finished.
With the volunteer training program standards, they got to a certain point and now it is done.
We keep on talking about legacy. How do we pick it up? So my little organization — and I say little; under $1 million a year and we are trying to be focussed — will see what we can do about it, but without having the commitment, the funding, the leadership and so forth, as a community, we are concerned about legacy on all this stuff. We take that seriously, but are struggling to figure out how to get through those.
A few are still ongoing, but the bulk of the work has stopped without a lot of plan on sustainability for the future. In regard to the Primary Health Care Transition Fund, there was a lot of work done around sustaining the work external to this fund. We did not have that at the strategy so we are trying to figure out how to continue the work because we are too committed to this issue to have it dropped.
The Chairman: As someone who put together the working groups, I am extremely disappointed. I did, however, have some idea that that was exactly what I was going to hear from the panel today.
I want to thank the four of you. I do not think you will be surprised to hear that there was nothing much new that I heard this afternoon, but I think that other members of the committee heard a lot that was new. There is still progress being made. As Dr. Librach said, it is a lot better than it was 10 years ago, but not where we expected it to be in 2007, and it is not where we hope it will be in 2008.
Thank you for all of your hard work at all levels of the delivery because you are all part of the delivery. Dr. Librach is perhaps more directly associated with the patients than the other three of you, but certainly not with the contributions that you make to quality of care in this country, to the care workers and to palliative care as a concept.
I should now like to discuss the conference in St. Gallen. I would like, from the committee, approval to send two members. I will not put names to it at this time, although I have had two senators who made application, but if we make it for two senators and one has to back out we can find a replacement among the committee. Is that approved?
Hon. Senators: Agreed.
The Chairman: Agreed. Thank you.
The committee adjourned.