Statement made on 08 June 2010 by Senator Sharon Carstairs (retired)
Hon. Sharon Carstairs:
Honourable senators, earlier today I tabled in this chamber a report entitled Raising the Bar: A Roadmap for the Future of Palliative Care in Canada.
As many honourable senators in this chamber know, this has been a passion of mine for the last 15 years. However, in reality, it goes back longer than that. Due to the way my parents died in 1980, I became engaged in death and dying issues.
Ninety per cent of Canadians who die can benefit from palliative care, yet, at best, just over 30 per cent of Canadians are presently receiving palliative care services in Canada. Palliative care is a whole-person health care that is multi-disciplinary in nature, can or should happen in any care setting, and aims to relieve suffering and improve the quality of both living and dying. It is care which should begin at the diagnosis of a life-threatening condition and continue to the end of the life. It views the patient and family as recipients of care and continues to include bereavement services for families after the death of their loved one.
When I was appointed to the Senate in 1994, I immediately became a member of the Special Senate Committee on Euthanasia and Assisted Suicide, and quickly became convinced of the need for better palliative care services in Canada. That committee tabled its report, entitled Of Life and Death, in June 1995, so it is no coincidence that I am tabling this report also in June, some 15 years later.
There have been significant improvements in providing quality palliative care to Canadians, yet we need to raise the bar much higher because there are still far too many Canadians needlessly dying in pain and unnecessary suffering. As honourable senators know, I have remained a dedicated advocate for the improvement of palliative care services. This is the third report since 1995, and I hope that it will yet again set out a vision for palliative care in the future, with both realistic and attainable goals. Its recommendations are a roadmap, I hope, to achieving those goals.
I would like to first begin by acknowledging the great support I receive from my staff in preparing all of the reports I have done in the past, including this one. I would also like to thank the Library of Parliament for their assistance in preparing this report, as well as the translators who have added their good words to this report.
Material for this report was gathered through a survey to which we received over 740 responses from coast to coast to coast. We had submissions and briefs; we did a media review and a literature review; we had in-person meetings and consultation sessions; we visited hospices and palliative care units; we had one-on-one interviews with key individuals in the field; and, finally, we conducted a series of round tables in all of the provinces in Canada — eight in person with Newfoundland and New Brunswick done via teleconference calls.
We were able to hear directly from over 160 experts — experts such as physicians, nurses, licensed practical nurses, social workers, pharmacists, music therapists, bereavement counsellors, physical therapists, occupational therapists, researchers, administrators, government representatives, spiritual care advisers, volunteers, hospice staff, Aboriginal representatives, home care workers, staff and administrators from long-term care homes and public policy analysts. All of them are involved in the provision of palliative care services. I was one of the few people who was happy that we had a longer prorogation, because I spent the entire month of February travelling from coast to coast to coast to prepare the background work for this report.
Honourable senators, like most countries, Canada is a death-denying society. We rarely discuss death and end of life, let alone accept them as natural stages of our lives. Yet, the inescapable fact remains that the mortality rate for humans is 100 per cent. We are all going to die.
Yes, it is true that Canadians are living longer, but they are living longer with complex conditions. The success of our health care system has created a situation in which we now manage chronic diseases longer and more effectively than we ever have before. It is not unusual for a person to live long enough to develop multiple chronic conditions. Our aging population, with more complex needs, is placing significant pressure on our health care system, our long-term care system and our family caregivers.
Canadians at the end of life and their families need the right interdisciplinary health and social service care, at the right time and in the right setting, based on their needs. Wherever they live in Canada, they should also expect to receive equitable access to the same quality of care. We need to spend smarter.
To realize a society where all Canadians have access to quality palliative care services, we need five things: a culture of care; sufficient capacity; support for caregivers, and I am referring specifically to family caregivers; integrated services; and leadership.
Let me begin by discussing the concept of culture of care. The health care system is being stretched and tested as never before in this country. We need to integrate palliative care services with chronic disease management, in recognition that all chronic conditions eventually have a terminal phase. Responding to the reality that people are living longer with chronic conditions, there needs to be a recognition that necessary supports must be put in place to manage a longer trajectory toward death.
Honourable senators, at one point we lived healthy lives and then we died quickly. Now the trajectory of death is slow. There is a requirement, therefore, for more services.
At least 70 per cent of Canadians do not have access to palliative care. Even when there is access, it is not equitable. We need a culture of care that recognizes death as a natural part of life. We need a system that incorporates palliative care services sooner, with earlier referral of patients to palliative care, so that the services can overlap with treatment and can continue after death to include bereavement services for those left behind.
Building capacity in Canada is essential. There are still Canadians dying in needless pain because health care providers do not know what a good death is. We need to build a capacity through our health care system, with increased research, better knowledge translation, implementation of best practices, better education for our health care providers and a health human resources staffing plan to address future needs.
All 17 medical schools across Canada now educate medical students in palliative care. This progress was made possible by the Educating Future Physicians in Palliative and End-of-Life Care project funded by Health Canada. Similar work is being done in education programs for nurses, social workers, pharmacists and pastoral care providers to ensure that training in palliative care is included in their course work.
Despite progress in many areas, there is no room for complacency. Education and training opportunities need to be ongoing and need to reach out to those in the field on a continuous basis. Programs such as Learning Essential Approaches to Palliative and End of Life Care, LEAP, by the Pallium project in Alberta, are extremely helpful in this manner.
Palliative care is multi-disciplinary by nature. Basic skills in end-of-life care must include core competencies in all health care professions. Volunteers must also be trained consistently with basic core services and skills.
Our health care professionals are also aging, and they are retiring faster than we can replace them with newly trained professionals. Primary physician and nursing shortages are common across the country. We need a strong health human resource sector, including volunteers. Honourable senators, support will never be provided entirely by professionals; there will always be a high component need for volunteers who can support the provision of quality palliative care services to all Canadians, regardless of their location or their financial, cultural or linguistic situation.
Honourable senators, we need support for family caregivers. Caregivers are fundamental in our health care system. The increasing emphasis on health care delivery in the home setting and in the community has meant the family caregiver will continue to shoulder a greater burden of care. We need to provide family caregivers with adequate supports to keep the family unit functioning as members experience their loss.
This support means providing financial support to family caregivers who stay home to provide care. I want to make particular note of what has been done recently in the province of Nova Scotia. We need to have well-resourced home support programs to provide support to family caregivers in the home. In addition, information and resources need to be provided to all family caregivers.
The Compassionate Care Benefit is now too narrow in its application, and changes are needed to ensure those caregivers who can most benefit from this program know about it and can access it.
We also cannot afford to overlook the need for follow-up grief and bereavement support to families. We need to adapt systems and programs to facilitate caregiver support, including financial support, education, training, respite care and bereavement services.
We need, honourable senators, to better integrate services. Our health care system is designed to deal mainly with brief periods of episodic illness. Our system is not well positioned to cope with the rise of chronic illness. In addition, the various health and social service systems are not integrated sufficiently to allow caring professionals and family members to pull together the right basket of services to meet the individual needs of patients nearing the end of life.
Palliative care programs and services need to be integrated into the health care system and not be an add-on program. Programs must be fundamentally integrated. They must not be subject to annual budget adjustments — or, frankly, budget deletions.
Health and social services must not exist in silos, but in partnerships to meet the needs of the population. We need to get serious about the integration of services, and we need to overcome incompatibilities that make it difficult for patients and caregivers to transition from one care to another.
Honourable senators, above all, we need leadership. We are facing a tsunami of aging in the next few years, and we are not prepared to handle the increase in numbers of those who will require palliative care.
To give you a brief glimpse, we now provide palliative care to 30 per cent of Canadians and we have about 250,000 deaths a year. Within 10 years, we will have 400,000 deaths a year. We will deliver fewer services if we do not do something now.
Without leadership, there will continue to be a patchwork of services available to Canadians, as no single province is equipped to provide the necessary national leadership. Leadership must emerge from all quarters. Raising the bar and providing quality palliative care to all Canadians will require a multi-jurisdictional approach. It will require leadership from the federal, provincial and territorial governments, and from the community as a whole, including professional associations, community organizations and health care providers.
Honourable senators, to meet the goals identified for a culture of care, capacity building, caregiver support, integration of services and leadership, this report makes 17 recommendations aimed at the federal, provincial and territorial governments, and the community as a whole, including professional associations, community organizations and health care providers.
This report recommends that the federal government re-establish a Canadian strategy on palliative care as a partnership between the federal, provincial and territorial governments and the community. It also recommends that the federal government recognize and accept its role as a direct provider of health care services and ensure that those populations for which it has a direct responsibility have appropriate programs and services. Further, it recommends that the federal government establish a federal Canada Pension Plan dropout provision for caregivers.
The federal government should make changes to Compassionate Care Benefit under Employment Insurance to improve awareness, to simplify the application process, to lengthen the period of the benefit, to increase the amount of benefit, and to amend the eligibility criteria.
It recommends that the federal government establish a caregiver benefit, similar to the child tax benefit, to assist with caregiver expenses, and create a national strategy for family caregivers.
The federal government should also establish a health and social care transition fund to assist provinces and territories in continuing to realign their health care systems to meet the needs of an aging population.
Also recommended is that the federal government establish a Canadian palliative care capacity-building fund to assist with research, knowledge translation, education and training, and a health human resources workforce plan.
The report recommends that provincial and territorial governments establish common data definitions and technologies and policies to facilitate smoother transitions between care settings; and establish system navigators to assist caregivers and patients in accessing the services they need. It further recommends that they work with the federal government and the community to establish a public awareness campaign on advanced care planning and palliative care.
The governments should collaborate with the federal government to establish a national program for those who lose income by engaging in care giving, but are not covered by the Compassionate Care Benefit under Employment Insurance.
It is recommended that palliative care services be covered under all provincial and territorial health insurance plans and that reciprocal agreements be created to eliminate waiting periods. The report also recommends the creation of a national standard of care to improve portability of services between provinces.
The report recommends to the community that professional organizations, such as the College of Physicians and Surgeons and the Canadian Medical Association, promote an early referral system designed to educate and support physicians in referring patients to palliative care services at the time of diagnosis of a life-threatening illness and that they recognize that palliative care as a specialty.
The report also recommends that professional organizations work together to adopt nationally standardized core competencies in palliative care for all disciplines.
In recent years, I have seen many improvements in palliative care services in Canada. There are few hospices, few long-term facilities and few palliative care hospitals in this country that I have not visited personally. Just last week, I was in Guelph when they opened their brand new hospice. I was in Kirkland, Quebec, for the opening of their hospice, which has now been operating for 10 years.
The reality is that too many Canadians are dying in pain. Too many physicians do not know what they do not know. To realize a society where all Canadians have access to quality palliative care services, we need a culture of care and we need to stop denying death in Canada. We need to have sufficient capacity of services and support for family caregivers. We need integrated services and, above all, we need leadership.
I hope that the 17 recommendations I have just outlined will provide a roadmap for achieving this vision. It is the responsibility of every Canadian to work together at all levels to ensure that the 90 per cent of us who will not die in the direct trajectory will have quality end of life care services.
In closing, I extend my heartfelt thanks to all who work and volunteer in palliative care, who provide care and nurturing and work to alleviate physical and mental suffering at the end of life. In my travels I have been told unanimously by those who work in the field that they have been blessed to be able to provide this gift of care to those who are dying, because they receive in return the gift of sharing in this most human of experiences. It is impossible to express enough gratitude for their contribution to the lives of others during such a serious time of need. There are no words, in any language, that can convey the extent of the gift they give of themselves. They define our most human values and remind us each and every day that the most basic and important value in life is to care for one another. I thank them publicly for all that they do.