Ontario, Canada: Using Networks to Integrate Palliative Care Province-Wide

Transcription

1 640 Journal of Pain and Symptom Management Vol. 33 No. 5 May 2007 Special Article Ontario, Canada: Using Networks to Integrate Palliative Care Province-Wide Deborah Dudgeon, MD, FRCPC, Vida Vaitonis, RN, MEd, BScN, Hsien Seow, BS, Susan King, BScOT, MBA, Helen Angus, BA (Hons), MSc, and Carol Sawka, BMedSc, MD, FRCPC Cancer Care Ontario (D.D., S.K., H.A., C.S.), Toronto, Ontario; Palliative Care Medicine Program (D.D.), Queen s University, Kingston, Ontario; and Mississauga Halton Community Care Access Center (V.V.), Toronto, Ontario, Canada; and Bloomberg School of Public Health (H.S.), Johns Hopkins University, Baltimore, Maryland, USA Abstract Ontario, a Canadian province, identified the lack of coordination, integration, and consistency of end-of-life care services as barriers to quality palliative care. To address these barriers, various governmental, organizational, and community-level initiatives were implemented. The Ministry of Health and Long-Term Care enacted an End-of-Life Care Strategy in 2005 aimed at shifting care from acute settings to appropriate alternate settings of care; enhancing client-centered and interdisciplinary service capacity; and improving access, coordination, and consistency of services. Crucial to accomplishing the strategy was the establishment of End-of-Life Networks within health care planning regions. The networks were instrumental in developing end-of-life care service delivery models in the various regions, bringing key stakeholders together toward a common vision, and building strong collaborations across providers and settings. Cancer Care Ontario, an organization dedicated to improving cancer care at the regional and provincial levels, also leads improvements in palliative care through the implementation of a palliative strategy for cancer patients aimed at improved measurement of quality indicators, increased use of evidence and standards, and increased efficiency and access to care. A regional network of organizations in Southeastern Ontario created a quality improvement project, the Palliative Care Integration Project (PCIP), which disseminated common symptom assessment tools, collaborative care plans, and evidence-based guidelines across the continuum of care. The PCIP was embraced by key stakeholders across the province as a model intervention to better coordinate, integrate, and standardize palliative care service delivery, and is currently being spread across all regions of the province. J Pain Symptom Manage 2007;33:640e644. Ó 2007 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care integration, palliative care networks, palliative care strategies, end of life Address reprint requests to: Deborah Dudgeon, MD, FRCPC, Palliative Care Medicine Program, Queen s University, 34 Barrie Street, Kingston, Ontario K7L 3J7, Canada. dudgeond@kgh.kari.net Ó 2007 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. Accepted for publication: February 1, /07/$esee front matter doi: /j.jpainsymman

2 Vol. 33 No. 5 May 2007 Use of Networks to Integrate Palliative Care in Ontario, Canada 641 Quality End-of-Life Care: A National Priority Of Life and Death, the report of the Special Senate Committee on Euthanasia and Assisted Suicide released in 1995, documented disparities in access to quality palliative care throughout Canada. 1 This report and other studies found a lack of integration between the multiple health care sectors and palliative care service providers, unrelieved pain and symptoms, lack of education and training in palliative care, and lack of health care professional capacity in Canada. 1e4 The Special Senate Committee unanimously recommended that governments make palliative care programs a top priority in the restructuring of the health care system. 1 A follow-up Senate report in 2000 entitled Quality End-of-Life Care: The Right of Every Canadian 5 found that there was inadequate federal and provincial collaboration, deficient allocation of resources, and insufficient attention to the end-of-life health care needs of Canadians. These reports acted as a catalyst for government action: a federal Cabinet Minister responsible for palliative care was appointed, a Secretariat on Palliative and End-of-Life Care within Health Canada was established, and a national strategy for end-of-life care was developed. 6 This federal strategy, developed in collaboration with the provinces, established five working groups to tackle the issues of best practices and quality care, education for formal caregivers, public information and awareness, research, and surveillance. Subsequent federal reports supported the urgency to develop palliative care services, including a national palliative care program, a compassionate care benefit for caregivers, improved home care for palliative patients, and pharmaceutical care. 2,7 As part of the strategy to combat these deficiencies and create a sustainable health care system, the Canadian Federal Health Accord of 2003 provided the provinces with federal funding to improve end-of-life care service delivery, and home care, and a compassionate care benefit for caregivers. 8 Ontario s End-of-Life Care Strategy Ontario, the largest province and home to almost 40% of Canadians, 9 has traditionally delivered end-of-life care through a variety of government-funded hospital and communitybased programs and services whose structure, staffing, and funding vary considerably from community to community. Palliative patients typically receive services from almost every sector of the health care system, including acute care hospitals, complex continuing care hospitals, ambulatory care clinics, residential and volunteer hospices, long-term care homes, and home care programs. The spectrum of available supports and services are unique to each region and reflect the capacity and evolution of the local health care system. 10 The system has lacked coordination, integration, and consistency in available end-of-life care services and has been difficult to navigate. 11 Lack of integration results in late referrals to care, unnecessary delays for treatment and symptom control, delays in transfers to appropriate settings of care, and unnecessary suffering and cost. 3,4,12 Ontario began to address shortfalls in palliative care delivery in 1993 when the government s Ministry of Health and Long-Term Care announced four palliative care initiatives that targeted education of family physicians, education of other health care providers, hospice volunteer visiting services, and pain and symptom management programs. 13 These initiatives targeted key areas that would improve palliative care in the community and longterm care sector. To date, these initiatives still exist but by themselves were insufficient to address many issues in end-of-life care. In response to the national funding for endof-life care and to help build a sustainable health care system that would meet the needs of the aging population, in 2004 the Ontario government invested in planning for an Endof-Life Care Strategy and in 2005 committed USD115.5 million over three years toward the strategy. The three primary objectives of the strategy were to shift care from acute settings to appropriate alternate settings of the patient s choice (e.g., home); enhance clientcentered and interdisciplinary service capacity; and improve access, coordination, and consistency of services and supports. 14 Funding to meet the strategy s objectives was directed at enhancing home care services, strengthening volunteer hospice services, funding residential hospices, and planning and integrating local services through regional networks. Central

3 642 Dudgeon et al. Vol. 33 No. 5 May 2007 to the strategy was the establishment of End-of- Life Care Networks within each health care planning region. These networks are composed of local stakeholders who help develop and implement strategic priorities and service delivery models that will maximize resource utilization and integration to improve the delivery of palliative care in the region. A year after implementation, a qualitative survey confirmed the importance of the Endof-Life Care networks. 15 Many respondents stated that the networks were instrumental in bringing key stakeholders together toward a common vision of quality palliative care, building stronger collaborations across care providers, making the delivery system easier to navigate, improving care processes and systems, and improving communication and information flow between providers and settings. Respondents also reported that the formation of the networks and strategy had improved consistency of care, pain and symptom management, and response times to client concerns and issues, and improved patient and family satisfaction by empowering them in their endof-life decisions. Cancer Care Ontario In 1997, the Ministry of Health and Long- Term Care of Ontario created Cancer Care Ontario and gave it a broad mandate to develop an integrated cancer system with coordinated cancer services and prevention efforts. 16 Cancer Care Ontario is the provincial government s chief cancer advisor, directs over $500 million in public funding for cancer prevention, detection, and care, and works with regional providers to plan and improve services for patients. In November 2004, Cancer Care Ontario released a three-year comprehensive plan to address gaps in cancer care delivery across the province in which palliative care was identified as a priority for strategic improvement. 17 The need for Cancer Care Ontario to develop a palliative care strategy was clear as cancer is the second leading cause of death in Ontario, estimated to kill more than 25,000 Ontarians in Moreover, cancer patients make up 80%e85% of patients seen by palliative care teams. 11 Data indicate that more than half of all cancer patients who die in Ontario die in acute care settings, despite research showing that 80%e90% would prefer to die elsewhere, 19,20 and significant variation in care exists between regions of the province. For instance, palliative care physicians visit and assess cancer patients in the last two weeks of their lives at a rate of 10%e32% at home, 4%e33% in outpatient settings, and 14%e26% in inpatient settings. 19 Thus, Cancer Care Ontario hired a provincial program leader, formed and supported a provincial committee with regional representation of local palliative care physician leaders, and developed an action plan that supported the provincial End-of-Life Care Strategy and focused on reducing the burden of cancer and improving outcomes for cancer patients with palliative needs throughout the course of their illness. The key components of the Cancer Care Ontario palliative care strategy include improving measurement through the development of quality indicators; increasing the use of evidence by developing, implementing, and disseminating evidence-based guidelines and standards; and fostering the development and uptake of tools to increase efficiency and access to care. 18 Improving Quality Without Funding: A Network in Action Focus groups and surveys conducted in Southeastern Ontario in 1999/2000 identified gaps in end-of-life care delivery: the minimal use of assessment tools, lack of evidence-based practice, discomfort of physicians in managing palliative care symptoms, inconsistent management of symptoms, lack of coordination and communication, and unmet patient and family needs. 21e24 To address these issues, a network of organizations came together and created a quality improvement project, the Palliative Care Integration Project (PCIP), to ensure efficient, high-quality palliative care delivery to cancer patients through the collaboration and development of service integration across the continuum of care. The PCIP involved collaboration and in kind support of administrative leaders and frontline interdisciplinary health professionals from over 25 organizations and nearly 100 individuals. Donated

4 Vol. 33 No. 5 May 2007 Use of Networks to Integrate Palliative Care in Ontario, Canada 643 funds supported the one paid staff personda project coordinator. The intervention involved implementation of common assessment tools to assess symptom intensity and patient functional status, the development and adoption of five evidence- and consensus-based collaborative care plans to guide practitioners, and the implementation of symptom management guidelines across all health sectors by all providers. The common tools and guidelines were meant to facilitate continuity of care across the sectors and develop a common language among providers. Furthermore, the intervention aimed to decrease variability of palliative care practice, improve efficiencies of care, improve access to palliative services, and improve responsiveness to patient and family needs. The intervention included an ambulatory and acute care consultative service, an outpatient cancer center, acute care hospitals and their emergency departments, community and residential care organizations, and complex continuing care facilities. Chart audits pre- and postimplementation of PCIP showed an increase in documentation of pain from 24.5% to 74.6%. The percentage of patients without documentation of palliative symptoms decreased from 62.3 in 2001 to 43.8 and 46.0 in 2002 and 2003, respectively. 25 Administrative data showed a decrease in the following: percentage of patients with at least one emergency room visit (from 94.3% to 84.8%), deaths in acute care (from 43.1% to 35.7%), and acute care length of stay per person year (from 21.6 to 18.3 days). There was minimal change in the intensity of symptoms, and no change in the burden on the caregiver or caregiver satisfaction with care. 25 This integrative model of palliative care delivery that utilizes evidence-based guidelines and collaborative care plans and validated assessment tools to improve consistency and continuity was embraced by Cancer Care Ontario and the Endof-Life Care Network leaders as a model that could be adopted by all regions of Ontario. was adopted and implemented by the regional End-of-Life Care Networks, the Community Care Access Centers (who assess, plan, and manage home care services), and Regional Cancer Programs across the province. The Provincial PCIP (renamed PPCIP) has goals similar to those of the original project: to use common assessment tools, care plans, and guidelines to integrate care across sectors within the various regions. The regional End-of-Life Care Networks, Regional Cancer Programs, and the Community Care Access Centers within each region are working together, with strong central project support from Cancer Care Ontario, to implement the project, standardize assessment and management, and improve the quality of care provided to palliative care patients throughout the province. The PPCIP was launched in the fall of 2006 as a quality improvement initiative and will undergo rigorous evaluation of outcomes and processes over the next 18 months. Summary Ontario has taken great strides to improve end-of-life and palliative care services. The national attention and funding support, combined with a provincial mission at the government, organizational, and community levels to improve palliative care delivery, were instrumental in making provincial changes and improvements. A few End-of-Life Care Networks were initially created informally through persistent voices within various regions to compel key stakeholders to work together to integrate care. The networks were then formalized across all regions in the province with the help of the End-of-Life Care Strategy, and have proven to be crucial to the development of collaborative partnerships across providers and settings involved in palliative and end-oflife care service delivery. Integration across Ontario With financial support from the Ministry of Health and Long-Term Care of Ontario and administrative and financial support from Cancer Care Ontario, the PCIP intervention References 1. Carstairs S. Of life and death. Final report of the Special Senate Committee on Euthanasia and Assisted Suicide. 35th Parliament, 1st session, June Romanow RJ. Building on values: The future of health care in Canada. Final report of the

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