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The PRISMA Symposium 2: Lessons From Beyond Europe. Reflections on the Evolution of Palliative Care Research and Policy in Canada
Vol. 42 No. 4 October 2011
Journal of Pain and Symptom Management
501
Special Section: The PRISMA Symposium
The PRISMA Symposium 2: Lessons From Beyond Europe. Reflections on the Evolution of Palliative Care Research and Policy in Canada Sharon Carstairs, PC, MAT, BA, and Michelle L. MacDonald, BSS Senator for Manitoba (S.C.), Senate of Canada, Ottawa, Ontario; and Public Policy Consultant (M.L.M.), St. Peters, Prince Edward Island, Canada
Abstract In Canada, the aging population with a rising incidence of chronic diseasesdand thus more complex care needsdis putting significant pressure on the health care system, long-term care system, and family caregivers. Ten years ago, the Government of Canada appointed Canada’s first Minister with Special Responsibility for Palliative Care. During that time, the federal government developed significant public policy goals for palliative care, including the Canadian Strategy on Palliative and End-of-Life Care. This strategy led to many policy improvements, particularly in the areas of research and data collection, education for health care professionals, and support for caregivers. In 2007, the Secretariat within the federal government supporting the Canadian strategy was defunded and disbanded. Four years later, progress in improving palliative care for Canadians has slowed. This article reviews some of the successes of palliative care policy and research in Canada and outlines several lessons to be learned for other jurisdictions developing public policy for palliative care. J Pain Symptom Manage 2011;42:501e504. Ó 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care policy, sustainable leadership, consistent terminology, collaborative networks
Introduction In 1995, it was estimated that about 5% of Canadians had access to quality end-of-life care. Ten years ago, the Government of Canada recognized the need for a federal public policy approach for improving palliative care for
Address correspondence to: Michelle L. MacDonald, BSS, Public Policy Consultant, 5707 St. Peters Road, Box 63, St. Peters, PE C0A 2A0, Canada. E-mail: [email protected] Accepted for publication: June 23, 2011. Ó 2011 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
Canadians and appointed Canada’s first Minister with Special Responsibility for Palliative Care. In 2002, the federal government adopted the Canadian Strategy on Palliative and End-ofLife Care, a policy initiative recognizing the need for a coordinated, collaborative approach to improving services for the dying in Canada. Currently, it is estimated that between 16% and 30% of Canadians have some level of access to palliative care, depending on their location within Canada. The strategy played a significant role in increasing access to palliative care services in Canada, promoting best practices, improving research, supporting caregivers, and 0885-3924/$ - see front matter doi:10.1016/j.jpainsymman.2011.06.009
502
Carstairs and MacDonald
educating health care providers. However, in 2007, the Secretariat within the government department of Health Canada that supported the strategy was defunded and disbanded. Since that time, progress in federal public policy regarding palliative care has slowed. Yet, the Canadian experience offers several lessons for other jurisdictions developing public policy initiatives to improve palliative care services for their citizens. This article examines some of the successes of the Canadian Strategy on Palliative and End-of-Life Care and draws some conclusions about key elements for other jurisdictions to consider when developing public policy approaches for their own citizens.
Successes of the Canadian Strategy on Palliative and End-of-Life Care In Canada, the individual provincial and territorial governments have primary responsibility for the delivery of health care services. The federal government supports the publicly funded system through transfer payments to the provinces and territories, develops health policy, and administers the Canada Health Act. The federal government also has a direct service delivery role for certain populations: First Nations on reserve and Inuit people, the military and veterans, refugee protection claimants, and inmates of federal penitentiaries. Although the delivery of health care is largely a provincial responsibility, the federal government can play an important role in knowledge translation, promoting research, and promoting opportunities for sharing of best practices. In addition, the federal government can play a leadership role by providing coordination and opportunities for collaboration. It was in recognition of these roles that the Canadian Strategy on Palliative and End-of-Life Care was developed. The strategy had three prongs: federal initiatives aimed at improving federal palliative care policy across areas of federal responsibility, an intergovernmental strategy among the federal government and provincial and territorial governments, and a community strategy, which included five federally supported community working groups. Even within areas of federal responsibility, before 2002 there was little attention given to federal interdepartmental cooperation and
Vol. 42 No. 4 October 2011
coordination. The first prong of the strategy addressed this shortcoming by establishing a federal interdepartmental working group. One of the biggest federal policy initiatives emerging under this prong was the establishment of the Compassionate Care Benefit under the Employment Insurance regime to provide income support and job protection for workers who qualify, to enable them to take time off work to care for a loved one who has been diagnosed with a terminal illness. The second prong, related to federal/provincial/territorial coordination, was immediately addressed by getting the issue of palliative care on the agenda for the meeting of Federal/Provincial/Territorial health ministers. Ongoing work in this area led to the inclusion of a commitment to first dollar coverage for palliative home care services in the 2004 Health Accord. The third prong of the strategy was the establishment of five community working groups: Best Practices and Quality Care, Education for Formal Caregivers, Public Information and Awareness, Research, and Surveillance. Health Canada’s final report of the strategy’s coordinating committee outlines numerous achievements for each of the five working groups.1 The strength of the working groups was the ability to bring together experts from across the country to leverage funding and provide opportunities for coordination of activities and collaborative partnerships. Core palliative care and end-of-life care competencies that apply to physicians, nurses, social workers, pharmacists, and pastoral care workers were identified by the Education for Formal Caregivers Working Group, and these competencies have now been included in the curricula for each of these disciplines. An accreditation process was developed under the strategy as a partnership between government and palliative care community. This included the development of national standards and measurement tools, such as national norms of practice for palliative care, gold standards for palliative home care, a model for volunteer best practice, and guiding principles and norms of practice for pediatric hospice palliative care. The Canadian Institutes of Health Research (CIHR) made a five-year investment in palliative and end-of-life care research, totaling 16.5 million dollars. The support of the provincial cancer boards and agencies made it possible to
Vol. 42 No. 4 October 2011
PRISMA 2: Evolution of Palliative Care Research and Policy in Canada
fund research teams across the country, forming the basis of a national network in palliative and end-of-life care research. This initiative was designed to support infrastructure development, enhance interdisciplinary research collaboration, encourage the development of early career researchers, and attract trainees to this emerging area of research. Knowledge translation grants were also available. CIHR also created a peer review committee to review applications for end-of-life research. Peer review by researchers who were knowledgeable about the specific ethical and clinical issues affecting end-of-life research not only improved the scientific rigor of this research, but also increased the number of research proposals that were funded because reviewers had an understanding of the unique needs of this type of research. The Public Education and Awareness Working Group created a glossary of terms to standardize terminology for advance care planning because the various jurisdictions within Canada use different terminology. An interprofessional education module on advance care planning was developed to enhance the education of health care professionals on the importance of advance care directives and the process of advance care planning. As these initiatives demonstrate, the greatest strengths of the Canadian Strategy on Palliative and End-of-Life Care was as a framework for leadership and for financial and administrative support for collaboration, coordination, and partnership between several levels of government, health care professionals of various disciplines, the palliative care community, researchers, and policy makers. Although the strategy has now ended, some of the work begun under the strategy has continued to evolve and collaborative partnerships have continued. However, without leadership, coordination, and targeted investments, policy change has slowed considerably. Despite the successes under the strategy, the aging of the population, the increase in the incidence of chronic disease, and rising health care costs are continuing to put pressure on the health care system. Canadians are still struggling to navigate the health care system and access palliative care services that are dispersed across many different settings and even across various levels of government; 70% of Canadians do not have access to palliative care.
503
Key Considerations for Policy Development Drawing on the experience in Canada, there are several key elements other jurisdictions should consider when developing a public policy approach to palliative care.
Need for Sustainable Leadership At the beginning of the last decade, the federal government played a large leadership role in promoting advances in palliative care policy and programs. Yet, since the termination of the Canadian Strategy, policy change has been much slower and the policy focus has shifted, although the work is not yet completed. Policy change requires sustained leadership and collaborative partnerships between the government and the broad community.
Need for Clear Terminology The lack of a clear, consistent, and commonly understood definition of palliative care has made it difficult to communicate policy priorities effectively with lawmakers, administrators, and the public. Consistency in the use of terminology, so the public, caregivers, health care providers, policy makers, and administrators have a common understanding of the terms and what they mean, is key to moving a policy framework forward.
Need for Collaborative Networks for Sharing Research and Best Practices Investments in palliative care make sense on the basis of economics, compassion, and humanity. Canada has worked hard to build a health care system that is a balance between cost, quality, and access. The challenge of the Canadian health care system is to find ways to be more cost-effective, to provide appropriate care that recognizes the increased need for prevention and management of chronic disease, and to define the appropriate role of governments within our current federal system. Underpinning this must be strong collaborative networks that measure outcomes, foster research, and provide for mechanisms for the transfer of knowledge and best practices. Coordinating approaches to research and the sharing of best practices, standardizing tools for measurement and
504
Carstairs and MacDonald
data collection, and identifying common priorities are key to building effective public policy.
Conclusion The challenges of changing demographics, rising health care costs, and increases in chronic disease are not unique to Canada. In the Canadian experience, concerted policy leadership and targeted funding under the Canadian Strategy on Palliative and End-ofLife Care led to significant successes in improving palliative care for Canadians. Despite significant progress in the past 10 years, there are still many challenges to overcome in providing palliative care to Canadians. Overcoming these barriers will require a multisectoral, cooperative approach. It will require continued research, knowledge translation, and the sharing of best practices for providing cost-effective, quality care at the end of life. Sustained political leadership is critical to supporting the development of policy initiatives, and clear, consistent terminology is required to build a comprehensible policy framework.
Vol. 42 No. 4 October 2011
Disclosures and Acknowledgments Sharon Carstairs is a member of the Senate of Canada, representing the province of Manitoba. She is a former Leader of the Government in the Senate and was Minister with Special Responsibility for Palliative Care from 2001 to 2003. She chaired the Special Senate Committee on Aging from 2006 to 2009. Michelle L. MacDonald is a public policy consultant located in Prince Edward Island. She is a former Chief of Staff to the Leader of the Government in the Senate and Minister with Special Responsibility for Palliative Care from 2001 to 2003 and was Special Advisor to the Special Senate Committee on Aging from 2006 to 2009. This work was presented to the PRISMA Symposium in Brussels, Belgium on March 24, 2011 by Senator Carstairs. There was no funding source or sponsorship for this work.
Reference 1. Health Canada. Canadian Strategy on Palliative and End-of-Life Care: Final report of the Coordinating Committee. December 2002 to March 2007. Ottawa, ON: Government of Canada, 2007.
Journal of Pain and Symptom Management
501
Special Section: The PRISMA Symposium
The PRISMA Symposium 2: Lessons From Beyond Europe. Reflections on the Evolution of Palliative Care Research and Policy in Canada Sharon Carstairs, PC, MAT, BA, and Michelle L. MacDonald, BSS Senator for Manitoba (S.C.), Senate of Canada, Ottawa, Ontario; and Public Policy Consultant (M.L.M.), St. Peters, Prince Edward Island, Canada
Abstract In Canada, the aging population with a rising incidence of chronic diseasesdand thus more complex care needsdis putting significant pressure on the health care system, long-term care system, and family caregivers. Ten years ago, the Government of Canada appointed Canada’s first Minister with Special Responsibility for Palliative Care. During that time, the federal government developed significant public policy goals for palliative care, including the Canadian Strategy on Palliative and End-of-Life Care. This strategy led to many policy improvements, particularly in the areas of research and data collection, education for health care professionals, and support for caregivers. In 2007, the Secretariat within the federal government supporting the Canadian strategy was defunded and disbanded. Four years later, progress in improving palliative care for Canadians has slowed. This article reviews some of the successes of palliative care policy and research in Canada and outlines several lessons to be learned for other jurisdictions developing public policy for palliative care. J Pain Symptom Manage 2011;42:501e504. Ó 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care policy, sustainable leadership, consistent terminology, collaborative networks
Introduction In 1995, it was estimated that about 5% of Canadians had access to quality end-of-life care. Ten years ago, the Government of Canada recognized the need for a federal public policy approach for improving palliative care for
Address correspondence to: Michelle L. MacDonald, BSS, Public Policy Consultant, 5707 St. Peters Road, Box 63, St. Peters, PE C0A 2A0, Canada. E-mail: [email protected] Accepted for publication: June 23, 2011. Ó 2011 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
Canadians and appointed Canada’s first Minister with Special Responsibility for Palliative Care. In 2002, the federal government adopted the Canadian Strategy on Palliative and End-ofLife Care, a policy initiative recognizing the need for a coordinated, collaborative approach to improving services for the dying in Canada. Currently, it is estimated that between 16% and 30% of Canadians have some level of access to palliative care, depending on their location within Canada. The strategy played a significant role in increasing access to palliative care services in Canada, promoting best practices, improving research, supporting caregivers, and 0885-3924/$ - see front matter doi:10.1016/j.jpainsymman.2011.06.009
502
Carstairs and MacDonald
educating health care providers. However, in 2007, the Secretariat within the government department of Health Canada that supported the strategy was defunded and disbanded. Since that time, progress in federal public policy regarding palliative care has slowed. Yet, the Canadian experience offers several lessons for other jurisdictions developing public policy initiatives to improve palliative care services for their citizens. This article examines some of the successes of the Canadian Strategy on Palliative and End-of-Life Care and draws some conclusions about key elements for other jurisdictions to consider when developing public policy approaches for their own citizens.
Successes of the Canadian Strategy on Palliative and End-of-Life Care In Canada, the individual provincial and territorial governments have primary responsibility for the delivery of health care services. The federal government supports the publicly funded system through transfer payments to the provinces and territories, develops health policy, and administers the Canada Health Act. The federal government also has a direct service delivery role for certain populations: First Nations on reserve and Inuit people, the military and veterans, refugee protection claimants, and inmates of federal penitentiaries. Although the delivery of health care is largely a provincial responsibility, the federal government can play an important role in knowledge translation, promoting research, and promoting opportunities for sharing of best practices. In addition, the federal government can play a leadership role by providing coordination and opportunities for collaboration. It was in recognition of these roles that the Canadian Strategy on Palliative and End-of-Life Care was developed. The strategy had three prongs: federal initiatives aimed at improving federal palliative care policy across areas of federal responsibility, an intergovernmental strategy among the federal government and provincial and territorial governments, and a community strategy, which included five federally supported community working groups. Even within areas of federal responsibility, before 2002 there was little attention given to federal interdepartmental cooperation and
Vol. 42 No. 4 October 2011
coordination. The first prong of the strategy addressed this shortcoming by establishing a federal interdepartmental working group. One of the biggest federal policy initiatives emerging under this prong was the establishment of the Compassionate Care Benefit under the Employment Insurance regime to provide income support and job protection for workers who qualify, to enable them to take time off work to care for a loved one who has been diagnosed with a terminal illness. The second prong, related to federal/provincial/territorial coordination, was immediately addressed by getting the issue of palliative care on the agenda for the meeting of Federal/Provincial/Territorial health ministers. Ongoing work in this area led to the inclusion of a commitment to first dollar coverage for palliative home care services in the 2004 Health Accord. The third prong of the strategy was the establishment of five community working groups: Best Practices and Quality Care, Education for Formal Caregivers, Public Information and Awareness, Research, and Surveillance. Health Canada’s final report of the strategy’s coordinating committee outlines numerous achievements for each of the five working groups.1 The strength of the working groups was the ability to bring together experts from across the country to leverage funding and provide opportunities for coordination of activities and collaborative partnerships. Core palliative care and end-of-life care competencies that apply to physicians, nurses, social workers, pharmacists, and pastoral care workers were identified by the Education for Formal Caregivers Working Group, and these competencies have now been included in the curricula for each of these disciplines. An accreditation process was developed under the strategy as a partnership between government and palliative care community. This included the development of national standards and measurement tools, such as national norms of practice for palliative care, gold standards for palliative home care, a model for volunteer best practice, and guiding principles and norms of practice for pediatric hospice palliative care. The Canadian Institutes of Health Research (CIHR) made a five-year investment in palliative and end-of-life care research, totaling 16.5 million dollars. The support of the provincial cancer boards and agencies made it possible to
Vol. 42 No. 4 October 2011
PRISMA 2: Evolution of Palliative Care Research and Policy in Canada
fund research teams across the country, forming the basis of a national network in palliative and end-of-life care research. This initiative was designed to support infrastructure development, enhance interdisciplinary research collaboration, encourage the development of early career researchers, and attract trainees to this emerging area of research. Knowledge translation grants were also available. CIHR also created a peer review committee to review applications for end-of-life research. Peer review by researchers who were knowledgeable about the specific ethical and clinical issues affecting end-of-life research not only improved the scientific rigor of this research, but also increased the number of research proposals that were funded because reviewers had an understanding of the unique needs of this type of research. The Public Education and Awareness Working Group created a glossary of terms to standardize terminology for advance care planning because the various jurisdictions within Canada use different terminology. An interprofessional education module on advance care planning was developed to enhance the education of health care professionals on the importance of advance care directives and the process of advance care planning. As these initiatives demonstrate, the greatest strengths of the Canadian Strategy on Palliative and End-of-Life Care was as a framework for leadership and for financial and administrative support for collaboration, coordination, and partnership between several levels of government, health care professionals of various disciplines, the palliative care community, researchers, and policy makers. Although the strategy has now ended, some of the work begun under the strategy has continued to evolve and collaborative partnerships have continued. However, without leadership, coordination, and targeted investments, policy change has slowed considerably. Despite the successes under the strategy, the aging of the population, the increase in the incidence of chronic disease, and rising health care costs are continuing to put pressure on the health care system. Canadians are still struggling to navigate the health care system and access palliative care services that are dispersed across many different settings and even across various levels of government; 70% of Canadians do not have access to palliative care.
503
Key Considerations for Policy Development Drawing on the experience in Canada, there are several key elements other jurisdictions should consider when developing a public policy approach to palliative care.
Need for Sustainable Leadership At the beginning of the last decade, the federal government played a large leadership role in promoting advances in palliative care policy and programs. Yet, since the termination of the Canadian Strategy, policy change has been much slower and the policy focus has shifted, although the work is not yet completed. Policy change requires sustained leadership and collaborative partnerships between the government and the broad community.
Need for Clear Terminology The lack of a clear, consistent, and commonly understood definition of palliative care has made it difficult to communicate policy priorities effectively with lawmakers, administrators, and the public. Consistency in the use of terminology, so the public, caregivers, health care providers, policy makers, and administrators have a common understanding of the terms and what they mean, is key to moving a policy framework forward.
Need for Collaborative Networks for Sharing Research and Best Practices Investments in palliative care make sense on the basis of economics, compassion, and humanity. Canada has worked hard to build a health care system that is a balance between cost, quality, and access. The challenge of the Canadian health care system is to find ways to be more cost-effective, to provide appropriate care that recognizes the increased need for prevention and management of chronic disease, and to define the appropriate role of governments within our current federal system. Underpinning this must be strong collaborative networks that measure outcomes, foster research, and provide for mechanisms for the transfer of knowledge and best practices. Coordinating approaches to research and the sharing of best practices, standardizing tools for measurement and
504
Carstairs and MacDonald
data collection, and identifying common priorities are key to building effective public policy.
Conclusion The challenges of changing demographics, rising health care costs, and increases in chronic disease are not unique to Canada. In the Canadian experience, concerted policy leadership and targeted funding under the Canadian Strategy on Palliative and End-ofLife Care led to significant successes in improving palliative care for Canadians. Despite significant progress in the past 10 years, there are still many challenges to overcome in providing palliative care to Canadians. Overcoming these barriers will require a multisectoral, cooperative approach. It will require continued research, knowledge translation, and the sharing of best practices for providing cost-effective, quality care at the end of life. Sustained political leadership is critical to supporting the development of policy initiatives, and clear, consistent terminology is required to build a comprehensible policy framework.
Vol. 42 No. 4 October 2011
Disclosures and Acknowledgments Sharon Carstairs is a member of the Senate of Canada, representing the province of Manitoba. She is a former Leader of the Government in the Senate and was Minister with Special Responsibility for Palliative Care from 2001 to 2003. She chaired the Special Senate Committee on Aging from 2006 to 2009. Michelle L. MacDonald is a public policy consultant located in Prince Edward Island. She is a former Chief of Staff to the Leader of the Government in the Senate and Minister with Special Responsibility for Palliative Care from 2001 to 2003 and was Special Advisor to the Special Senate Committee on Aging from 2006 to 2009. This work was presented to the PRISMA Symposium in Brussels, Belgium on March 24, 2011 by Senator Carstairs. There was no funding source or sponsorship for this work.
Reference 1. Health Canada. Canadian Strategy on Palliative and End-of-Life Care: Final report of the Coordinating Committee. December 2002 to March 2007. Ottawa, ON: Government of Canada, 2007.