DIGNITY. COMPASSION. CHOICE.

Transcription

1 Toronto Central LHIN DIGNITY. COMPASSION. CHOICE. TC LHIN Palliative Care Strategy March 2014

2 Table of Contents Executive Summary... 4 Palliative Care: Background... 7 Introduction... 7 TC LHIN Palliative Care Strategy: A New Model of Planning... 8 Our Planning Approach... 8 Our Planning Model... 9 Our Work Streams... 9 Engaging Clients and Caregivers...10 The Current Context: TC LHIN A Strong History and Foundation of Palliative Care in the TC LHIN Our Current Context TC LHIN Service Profile Assessing TC LHIN Opportunities Moving Forward: Addressing the Opportunities for Improvement in Our Current System What Will Success Look Like? The Toronto Central LHIN Palliative Care Strategy Our Strategy, In Context TC LHIN Palliative Care Strategy Addressing the Gaps The Magnitude of Change Governance Governance Structure Options Design Principles Recommended Governance Model Client and Caregiver Engagement Education Measurement and Performance Accountability Implementation Timelines Summary and Statement Impact TC LHIN PALLIATIVE CARE STRATEGY 2

3 Appendix A: Steering Committee Membership Appendix B: Work Stream Membership Appendix C Measures of Interest Appendix D Client & Caregiver Feedback TC LHIN PALLIATIVE CARE STRATEGY 3

4 Executive Summary Recognizing the need to improve access to and availability of palliative care services, a group of more than 80 stakeholders with palliative care experience and expertise came together in 2011 to develop A Declaration of Partnership and Commitment to Action, a provincial palliative care framework for advancing high quality, high value palliative care in Ontario. The result is a comprehensive framework that sets out individual and collective commitments, common priorities and appropriate actions 1 and links chronic disease and palliative care explicitly in the plan. In moving away from a system that is siloed, reactive and disease-focused, the Declaration of Partnership aims to transform palliative care, articulating the foundational elements for integrated health care that measures and delivers health outcomes, provides excellent client and caregiver experience and value. The Declaration of Partnership challenges the entire system to organize around a common palliative care vision: Adults and children with progressive life-limiting illness, their families and their caregivers will receive the holistic, proactive, timely and continuous care and support they need, through the entire spectrum of care both preceding and following death, to: Help them live as they choose, and; Optimize their quality of life comfort, dignity and security. The Declaration of Partnership has been endorsed by the Ministry of Health and Long-Term Care, the Local Health Integration Networks (LHINs) and palliative care stakeholders across the province. In alignment with the Declaration of Partnership, all the LHINs have agreed to make palliative care a priority for system transformation within their LHIN and arrive at the following common end point at year 3 of implementation: 1. Increasing the number of Ontarians who receive palliative care outside of acute care (absolute point of measurement will be a 10% reduction in the total number of hospital days attributed to palliative care). 2. Improving the palliative care experience of clients and caregivers. In developing a palliative care strategy for the Toronto Central LHIN, a planning approach was developed and a current state analysis, including a gap review was conducted. Clients and caregivers were also invited to share their views on how they would like to experience the palliative care system going forward. Their suggestions addressed areas for optimization in education and training of health care professionals; communication and information sharing; integrated and coordinated services; caregiver support and palliative care awareness. Stakeholder engagement was, and will continue to be, critical to the success of the TC LHIN palliative care strategy. Not only is this reflective of a larger, client-centred philosophy, but also reflective of the emerging models for palliative care. 1 Advancing High Quality, High Value Palliative Care in Ontario: A Declaration of Partnership and Commitment to Action, p.6. TC LHIN PALLIATIVE CARE STRATEGY 4

5 In conducting this planning and engagement process, we learned that there are comprehensive, quality palliative care services available in the TC LHIN. What is not clear however is whether the available resources will adequately meet future population needs or have the desired impact from a system perspective (i.e. improving the client and caregiver experience and reducing in hospital days). An inventory of the scope of services offered by organizations and sectors in the TC LHIN has been developed to serve as a baseline for future planning and optimization. What can we expect from the recommended strategy? Described in our own clients words, our strategy will create a palliative care system that preserves dignity, exudes compassion and enables choice for clients and caregivers. Our strategy will work to optimize the quality services already present in the TC LHIN and create an integrated system that is acknowledged for its quality care, smooth client transitions and excellent client and caregiver experiences. These initiatives span all sectors to build a system that supports cross-sectoral collaboration and integration and where care is seamless, clients are connected to services earlier and providers work better together to enhance access to these services. A summary of strategies and initiatives is represented in the table below. STRATEGY Strategy #1: Improve Early Identification of Clients and Advance Care Planning in all Sectors YEAR 1 & 2 INITIATIVE (Where we will start) Initiative #1: In-patient hospital teams integrate the 'surprise question' into patient rounds both at admission and at discharge. Initiative #2: Identify opportunities for nurse practitioners to partner with primary care and community agencies serving marginalized populations. Initiative #3: Develop a plan to ensure early identification and advance care planning across all care settings. Strategy #2: Increase Access to Palliative Care Initiative #4: Leverage existing access models to develop a coordinated system for palliative care information and referral. Initiative #5: Build capacity within the visiting hospice sector by identifying and standardizing core and specialized hospice services and developing a centralized volunteer training program. Initiative #6: Implement RM&R solution for palliative care inpatient beds and resident hospice beds. Strategy #3: Enhance Support for Caregivers to Help Relieve Burden/Stress Initiative #7: Complete a gap analysis of programs and services available to support psychosocial and grief/bereavement needs of clients, caregivers and families. Identify opportunities to enhance these services as part of integrated care teams Strategy #4: Build Community Capacity by Enhancing Integrated Care Teams Initiative #8: Pursue integration opportunities to optimize efficient delivery and capacity of services and supports in community and across care settings, including primary care. TC LHIN PALLIATIVE CARE STRATEGY 5

6 STRATEGY Strategy #5: Strengthen Supports in LTC YEAR 1 & 2 INITIATIVE (Where we will start) Initiative #9: Build capacity with Long Term Care Homes staff through educational opportunities and by leveraging education and supports from the Nurse Lead Outreach Teams (NLOT) and Palliative Pain and Symptom Management Consultants (PPSMC). Initiative #10: Improve communication between Long Term Care teams, outreach supports, residents and caregivers through palliative care rounds and formalized advance care planning and goals of care discussions from point of admission. Initiative #11: Conduct an analysis of the gaps, challenges and unique needs for palliative care in LTC. Strategy #6: Improve Emergency Room Avoidance and Reduce Hospital Days. Initiative #12: Build capacity of ER staff to better identify and support palliative clients in the ER and leverage existing resources. Initiative #13: Leverage and expand EMS partnership with integrated care teams to support clients in the home and avoid transfer to the ED. Strategy #7: Establish Core Governance Structures and Accountabilities for System Initiative #14: Develop and implement a TC LHIN Palliative Care governance and accountability structure consistent with a Council/Program Structure. Strategy #8: Develop Palliative Care Education and Awareness Programs Targeted at Key Audiences. Initiative #15: Complete a gap analysis of education and training gaps within and across the various sectors Strategy #9: Capacity Planning to Meet Future Palliative Care Needs Including the Needs of Marginalized Populations Initiative #16: Conduct analysis to support capacity planning to meet future needs including the needs of marginalized populations In developing this strategy, we acknowledge that system transformation is a long process that requires significant shifts in policies, process and culture at the system, organizational and individual level. This strategy provides the foundation for the larger system reform needed for a future high quality palliative care system. We believe that by focusing on the key strategies and initiatives outlined in this document, we will begin to introduce common language and processes into the TC LHIN palliative care system that will serve as a catalyst for larger system shifts moving forward. TC LHIN PALLIATIVE CARE STRATEGY 6

7 Palliative Care: Background Introduction The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual - World Health Organization In Ontario today, 50% of all people die in acute care hospitals. However, most Ontarians prefer to die in other settings, including longterm care homes, residential hospices, private residences or other community-based settings. Furthermore, it is estimated that only 16-30% of Canadians have some level of access to palliative care. 2 Recognizing the need to improve access to and availability of palliative care services, a group of more than 80 stakeholders with palliative care experience and expertise came together in 2011 to develop the A Declaration of Partnership and Commitment to Action, a provincial palliative care framework for advancing high quality, high value palliative care in Ontario. The result is a comprehensive framework that sets out individual and collective commitments, common priorities and appropriate actions 3 and links chronic disease and palliative care explicitly in the plan. In moving away from a system that is siloed, reactive and disease-focused, the Declaration of Partnership aims to transform palliative care, articulating the foundational elements for integrated health care that measures and delivers health outcomes, provides excellent client and caregiver experience and value. The framework is intended to ensure a sufficient level of provincial consistency, while balancing the need for flexibility in designing a plan that aligns with the needs and resources available in the local community. The Declaration of Partnership has been endorsed by the Ministry of Health and Long-Term Care, the Local Health Integration Networks (LHINs) and palliative care stakeholders across the province. Resulting from the Declaration of Partnership, all LHINs have unanimously agreed to: Recognize palliative care as a priority for system transformation within each LHIN, Use the Declaration of Partnership as the basis for broader regional consultation and planning discussions, and Arrive at a common end point at year 3 of implementation: to reduce the total number of acute care hospital days attributed to palliative care and improve the palliative care experience of clients and caregivers. In alignment with the release of the Declaration of Partnership, the Toronto Central LHIN's Strategic Plan commits to developing a strategy to redesign and integrate palliative care services to support the best possible palliative care experience for people. There are two main outcomes that the TC LHIN plan will pursue as part of its palliative care strategy. These are: 2 Raising the Bar: A Roadmap for the Future of Palliative Care in Canada, Advancing High Quality, High Value Palliative Care in Ontario: A Declaration of Partnership and Commitment to Action, p.6. TC LHIN PALLIATIVE CARE STRATEGY 7

8 1. Increase the number of Ontarians who receive palliative care outside of acute care (absolute point of measurement will be a 10% reduction in the total number of hospital days attributed to palliative care). 2. Improve the palliative care experience for clients and caregivers. This report is intended to provide an overview of the TC LHIN s planning approach and the current state of palliative care in the TC LHIN, including a review of gaps and opportunities and recommendations for a regional plan for palliative care services. TC LHIN Palliative Care Strategy: A New Model of Planning Our Planning Approach The first step in the planning process was to identify a series of leaders who had expertise and knowledge in the area of palliative care. In October 2012, a Palliative Care Steering Committee was convened to provide ongoing strategic advice and recommendations to the TC LHIN regarding the development of the TC LHIN hospice palliative care regional plan. Accountable to the TC LHIN, the Steering Committee relied on the Declaration of Partnership as the foundation for consultation and planning discussions. The membership of this committee is identified in Appendix A of this document. The Steering Committee acknowledged that an immense amount of work had been undertaken by individuals and organizations advancing palliative care in the TC LHIN, however, there was also a recognition that much of this work was not formalized among providers (i.e. providers working collaboratively but not aligned collectively toward a common purpose). If the TC LHIN was to make a positive impact for clients and caregivers, a new planning approach was required an approach that was coordinated, proactive and integrated. As the Steering Committee began the planning process, a series of principles were developed to form the basis of this new planning approach. These principles included: Leverage, don t duplicate or re-create work already completed by the system. Seek alignment to provincial/pan LHIN planning assumptions. Seek alignment with and be informed by other TC LHIN initiatives (e.g. Health Links). Start with the end in mind (i.e. measures and impact). Focus on impact (short and long term) for entire system. Recognize importance of impact in key sector areas (i.e. Acute, Community and LTC). Design with client and family input. TC LHIN PALLIATIVE CARE STRATEGY 8

9 Our Planning Model With these principles in mind, the Steering Committee began to evaluate possible planning models for consideration. They identified the need for a planning approach that would avoid the pitfalls of siloed thinking and instead take a multidisciplinary, cross-sectorial approach to planning, harnessing the expertise and energy of dedicated palliative care providers and practitioners across the TC LHIN. From these discussions, the TC Palliative Care Planning Model was born (Figure 1). Central to this planning model was the concept that every conversation needed to start with a discussion about the people that mattered most: our clients and their caregivers. Another core concept of the model was to focus on work streams (represented by the horizontal red bands) that transcended and moved across Figure 1 TC LHIN Palliative Care Planning Model multiple care settings and/or sectors (represented by the vertical blue bands). These work streams were identified as shared priorities in the Declaration of Partnership to advance. It was acknowledged that previous planning attempts had largely been individual or sector focused. Under this planning model the emphasis would be on system solutions while still recognizing the perspectives of each sector group. Our Work Streams On December 16, 2013 this new planning approach and model was presented to over 50 palliative care representatives from across the TC LHIN at a Planning Summit. The group was asked to provide their perspectives on this approach and to lend their support to the planning process that would be undertaken at the onset of Summit participants endorsed the planning approach and model and recommendations were made as to how providers, clients and caregivers could best be engaged in the development of a TC LHIN Palliative Care strategy. One of these recommendations focused on the use of work streams for planning. Building on the planning model, it was suggested by those in attendance (and subsequently endorsed by the Steering Committee) that four cross-sectoral, inter-professional work streams be established with the following objectives: To serve as a catalyst for idea generation and discussion; TC LHIN PALLIATIVE CARE STRATEGY 9

10 To identify and prioritize opportunities and initiatives that will have an impact on the key success measures of the TC LHIN Palliative Care Strategy; To solicit thoughts and ideas from peers, system stakeholders and clients and caregivers; To act as a liaison, champion and advocate for the work and efforts of the work stream. Four work streams were created, aligned with the Declaration of Partnership and the planning model, with a focus on satisfying these objectives: 1. Broaden access and increase timeliness of access. 2. Strengthen caregiver supports. 3. Strengthen service capacity and human capital in all care settings. 4. Improve integration and continuity across care settings. Each work stream included representation from palliative care service providers and planners from across sectors in the TC LHIN. Work stream membership is outlined in Appendix B. From January to March 2014, the work streams met to identify, debate and prioritize strategic initiatives that would form the basis of the TC LHIN Palliative Care Strategy. The recommendations in this report are a direct reflection of the work of each of these work streams. In addition, work was also being conducted in two other priority areas outlined by the Declaration of Partnership: 5) strengthening accountability and introducing mechanisms for shared accountability and, 6) building public awareness. On the recommendation from participants at the Planning Summit, the Steering Committee took leadership direction of these two work streams. Recommendations from these discussions are also presented in this report. Engaging Clients and Caregivers In developing this strategy, planning summit participants repeated that it was imperative that client and caregiver voices be present throughout the planning process. To achieve this, a number of documents were reviewed including client and caregiver surveys and resource materials 4 in addition to sector specific research related to client and caregiver experiences. These resources were leveraged to support the discussions at both the work stream and Steering Committee level. In addition to these resources, and during key points in the planning process, focus group sessions were conducted with people who had lived experience in the TC LHIN palliative care system to help inform planning and validate initiatives. 5 4 McMaster University, ICCP Caregiver Voice Survey, 2013; Making a Difference: Exploring the Experiences and Needs of Caregivers Report (prepared by Hospice Toronto and First Unitarian Congregation of Toronto), January 2010; In The Now (Hospice Toronto Disability Transitions Project). 5 Client & Caregiver Focus Groups (February 20, 2014 and March 18, 2014) TC LHIN PALLIATIVE CARE STRATEGY 10

11 The feedback received by clients and caregivers was informative, insightful and deeply moving and was shared with the work streams and Steering Committee. Based on this feedback, both the work streams and Steering Committee modified strategies, tactics and language to better reflect client and caregiver needs and how they would like to experience the palliative care system going forward. The participants were clear in their desire to commend the many dedicated individuals and caregivers in the TC LHIN Palliative Care system and ultimately summarized these experiences by stating that people truly made the difference in their overall journey through the system. People also spoke about the diversity of resources that were available in the TC LHIN, while also noting that these services were not always apparent or well known by themselves or care providers. While there were many positive experiences shared by focus group participants, some key messages for improvement included: Education/training of health care professionals our focus groups articulated a number of lived experiences in which our system fell short with respect to the overall literacy of providers in the discipline and philosophy of palliative care. This resulted in some experiences lacking in compassion and sensitivity as well as care experiences that were not reflective of a palliative care approach. This was cited for all sectors. Communication and Information Sharing participants suggested that when it comes to information and communication, the current palliative care system in the TC LHIN is no system at all. Caregivers described significant gaps with providers and organizations ability to collect, retain and transfer information effectively, often resulting in unnecessary duplication of questions for clients and caregivers and, in some cases, issues with the quality of care being provided. This was particularly noted when speaking about transition points between services and providers and within organizations and across sectors. Integrated and Coordinated Services focus group participants reflected on their perceptions that the system lacked coordination, often leaving clients and caregivers as their own advocates in what proved to be a complex system of care. Clients also spoke about inconsistent models and approaches to care between organizations and even within care teams providing care to their loved ones. Family/Caregiver support many of the participants in our focus groups reflected on their own experience as caregivers and articulated the social, emotional and physical challenges of caring for someone who was receiving palliative care. Generally, caregivers emphasized that while their loved ones had received good care and support there was little or no acknowledgement of their needs as caregiver. Palliative Care Awareness (i.e. What does it mean to be palliative? ) focus group participants talked about the lack of a clear understanding about what palliative care actually is and the supports and services available to them. People discussed a lack of understanding for both their loved one and families (noting a variation in understanding/acceptance within families). People articulated a strong belief that education is essential for families and providers to ensure that care is tailored to reflect where they are in their grieving/coping process. TC LHIN PALLIATIVE CARE STRATEGY 11

12 Stakeholder engagement was, and will continue to be, critical to the success of the TC LHIN Palliative Care Strategy. The recommendations provided in this report have taken participants views and weaved them into this strategy. Beyond this report, clients and caregivers need to be at the centre of this strategy. Not only is this reflective of a larger, client centred philosophy, but also of the emerging models for palliative care. The Current Context: TC LHIN A Strong History and Foundation of Palliative Care in the TC LHIN There is a long history of palliative care services in the Toronto Central LHIN dating back to the early days of responding to the HIV/AIDS crisis of the 1980s. Since that time there has been the development of palliative care services across all sectors and care continuum. Good collaboration between palliative care providers has resulted in many improvements in palliative care such as a common referral form and process to access palliative care services, integrated palliative care teams where CCAC and community based palliative physicians work together to support palliative patients at home, access to community based palliative medical support across the entire LHIN geography, availability of pain and symptom management support for patients in LTC as well as strong palliative consult teams in hospital ensuring access to palliative care for patients in hospital. Overall the palliative services in the TC LHIN are comprehensive and of very good quality. The intent of this strategy is to make the TC LHIN palliative care system better, more integrated, coordinated and of the highest quality to support more people into the future. Today, palliative patients in the TC LHIN are for the most part very pleased with the palliative services they receive. A recent survey found that 90% of all caregivers reported that the palliative services of the community based palliative teams (CCAC and Community Based Palliative Physicians) are very good or excellent. 6 Research conducted at McMaster University of these teams found that the Toronto Central community based palliative teams were effective in reducing emergency department and hospital use at the end of life and increased the likelihood of patients dying outside of an acute care hospital in settings like home, hospice or palliative care units. 7 Over 80% of all palliative patients receiving community based palliative care die outside of an acute care hospital either at home, hospice or palliative care unit. There are also very few wait lists for palliative services in the TC LHIN, and where wait lists exist, processes are in place to prioritize patients with the most urgent needs. Once a person is identified as needing palliative care they typically receive timely, quality care. However, we know that there are many more people who would benefit from palliative care that are not accessing it because they are not identified early in the trajectory of their illness. Currently most palliative programs report that approximately 70-80% of the people they care for are living with cancer. There are many more patients with advanced chronic illness such as those with end stage heart disease, kidney disease or advanced dementia that are not getting timely access to palliative care. These individuals most often are frail elderly with complex 6 March 2014 VOICES Survey conducted of CCAC patients as part of the Integrated Palliative Care Project (ICCP) McMaster University 7 The Effectiveness of Palliative Care Expert-Consult Teams: Focus on the Temmy Latner Centre for Palliative Care (TLCPC) Team, Toronto ON (2013) - Dr. Hsien Seow, McMaster University, Department of Oncology, Cancer Care Ontario Research Chair Co-Investigators: Kevin Brazil, Lisa Barbera, Jonathan Sussman, Jose Pereira, Denise Marshall, Amna Husain, Peter Austin TC LHIN PALLIATIVE CARE STRATEGY 12

13 and advanced chronic illness. As a result of the system not identifying these individuals as palliative they are not getting access to palliative care services in a timely manner and many are dying in hospital inappropriately. The TC LHIN Palliative Care Strategy aims to build on the strong foundation of palliative care in this LHIN to create a palliative care system that focuses on early identification of palliative needs, advance care planning, supporting choice for how and where people want to die and providing the highest quality of palliative care services. This strategy will focus on integrating and coordinating palliative care services and ensuring the right amount of service in the various care settings. Finally, at the heart of the strategy is a focus on meeting the needs of patients and their caregivers and ensuring compassionate palliative care that supports dignity and choice. Our Current Context Much like the rest of Ontario, the health care system in the TC LHIN is undergoing significant change and transformation. With a diverse mix of health service providers the TC LHIN oversees and funds 174 providers receiving $4.2 billion. Of these providers, 136 agencies deliver community health services to Toronto s diverse neighborhoods and communities. It is well acknowledged that the TC LHIN has unique challenges in delivering health services to its population. These include, but are not limited to: People receiving different standards of care depending on their background and where they live. People having difficulty moving across the system and finding it fragmented and confusing. People not receiving the right care, in the right place. Too many are in hospital when they would prefer to receive care in their communities or homes. People not feeling well informed about their health care or effectively involved in decisions that affect their health and lives. The TC LHIN s Strategic Plan focuses on where the LHIN can have the greatest impact on patients and the health system: the 1% of the population that accounts for 34% of health costs and the 5% of the population that is at risk but is able to maintain independence with the right services and support. For this population, many are often not receiving the right care in right place. With these challenges in sight, the LHIN has articulated a number of priorities for the next 2 years: Address the needs of the 1% of highly complex patients with the greatest needs. Prevent and delay serious illness and injury among those who are at greatest risk of declining health. Deliver value and sustainability through efficient use of resources. Make Patients Partners. TC LHIN PALLIATIVE CARE STRATEGY 13

14 Sustain Gains. Looking at the overall priorities and focus areas of the TC LHIN, there is strong alignment with the trends and opportunities within the palliative care system both provincially and locally. This strategy has been developed in consideration of and in alignment with initiatives beyond this particular exercise that include the TC LHIN Health Links initiatives, the Cancer Care Ontario Palliative Care Strategy (funded through the Canadian Partnership Against Cancer) and the ongoing efforts of the Provincial Palliative Care Working Group. Keeping these larger pieces in mind, we believe that by addressing the needs of those impacted by life-limiting illness that specific overall priorities of the TC LHIN will be advanced. For example: It is well established that palliative care clients are typically challenged by the very conditions that are common to the 1% population (i.e. highly complex patients) who demonstrate the greatest needs and require the most resources. Additionally, many of the people captured in the top 5% of high need residents will eventually become part of the 1%. In developing a palliative care strategy that aims to identify clients early, engages in ongoing advance care planning discussions, provides quality care in integrated care team settings and supports people to die in their place of choice, we anticipate that clients will have better quality of life, be higher functioning, be less vulnerable to injury and deterioration, and need fewer resources. In doing so, we believe that many palliative clients will avoid becoming part of the 1% challenge. While palliative care is often considered end of life care, it represents a broader continuum of care with a focus on keeping people safe and secure while delaying or preventing serious comorbidities and injury among those who are at greatest risk of declining health. By addressing the needs of the palliative care population in this regard through, for example, nurse practitioner outreach teams in the community and in Long Term Care we will also contribute to the TC LHIN s overall strategy of preventing and delaying serious illness and injury. There are a wide variety of resources dedicated to palliative care in the TC LHIN however it is clear from the data and client and caregiver feedback that these resources are not always delivering optimal value and sustainability through efficient use of resources. It is recognized that organizations and systems are siloed and that planning and integrated delivery coordination requires improvement in the TC LHIN. Developing a governance structure for the palliative care system in the TC LHIN that focuses on system planning and accountability will help to address these issues. There is an acknowledgment by planners, providers, clients and caregivers that most users of the palliative care system see opportunities for the engagement of clients and caregivers in the design and ongoing delivery of care and supports. At the core of this strategy and governance structure is the ongoing engagement of clients and caregivers. The TC LHIN has made it clear that it is no longer possible for organizations to act in isolation. Success will depend on building partnerships within and across sectors. TC LHIN PALLIATIVE CARE STRATEGY 14

15 TC LHIN Service Profile The TC LHIN has a long history in delivering palliative care services and has a comprehensive set of services to meet the needs of palliative patients. The TC LHIN has a wide variety of health service providers dedicated to the provision of quality palliative care services. Figure 2 (right) illustrates the various sectors and providers that are currently involved in the delivery of palliative care services in the TC LHIN. Organizations and individuals have worked well together. This collaboration has been driven by the goodwill and dedication of a network of volunteer members in the palliative care community. This network, the Toronto Central Hospice Palliative Care Network, supported many collaborative and improvement activities among palliative care providers however it has became clear that a more structured and purposeful approach to improving palliative care across the system is required. The following diagram highlights many of the supports and services and associated levels of care available to TC LHIN residents (where data is available): Primary Care Emergency Medical Services (EMS) Volunteers Community Care Access Centre Long Term Care TC LHIN Palliative Care Providers Visiting Hospice Community Support Services Acute Care Residential Hospice Figure 2 TC LHIN Palliative Care Partners TC LHIN Palliative Care Service Profile (Adult) 195 Pallia ve Care Beds (8 Pallia ve Care Units and 1 Residen al Adult Hospice) suppor ng approximate 2000 clients/year CCAC Pallia ve Care Program suppor ng approximately 2020 clients/year and another 1300 clients/year at the end of life in other programs. 9 hospital pallia ve care consult teams suppor ng approximately 4600 clients/year 11.5 FTE Specialized Pallia ve Care Physicians in two groups (Temmy Latner and Dorothy Ley) suppor ng approximately 1200 clients/year Ter ary 8 Visi ng Hospices providing support to approximately 900 clients/year. CCAC oncology/chemotherapy program suppor ng 1300 clients/year with an average daily caseload of 33 clients with many receiving pallia ve chemotherapy 2 Pallia ve Pain and Symptom Management Consultants suppor ng clients in 36 LTCHs 12 Symptom Management Beds (Cancer) suppor ng approximately 350 clients/year Secondary 5880 Long Term Care Home beds in 36 LTCHs 5 Nurse Prac oners, CCAC, suppor ng approximately 200 clients/ month 136 Community Agencies (CSS and CMHA) 17 Community Health Centres 1100 Primary Care Physicians Primary Figure 3 - TC LHIN Service Profile TC LHIN PALLIATIVE CARE STRATEGY 15

16 As this model demonstrates and as the following table outlines, there is a comprehensive set of services and supports in place for people in the palliative care system. What is not clear however is whether these resources are adequate to address population needs and, additionally, whether these are the right resources to support this strategy and impact on the key performance measures (i.e. improving the client/family experience and reduction in hospital days)? To establish a baseline of what services are available and in what magnitude, the following table provides further detail regarding the key sectors and organizations delivering palliative care services in the TC LHIN (where data is available). Table 1 - TC LHIN Palliative Care Service Profile SECTOR/SERVICE/DESCRIPTION ORGANIZATIONS PALLIATIVE CARE SERVICES OFFERED NOTABLE STATISTICS (2012/2013 DATA UNLESS OTHERWISE STATED) Long Term Care Sector 36 Long Term Care Homes Varying levels of palliative care services and supports Long-Term Care Homes are places where individuals live and receive support services and are often the right choice for individuals who need help with the activities of daily living, access to 24-hour nursing care or supervision in a secure setting. Supported by Palliative Pain & Symptom Management Consultants Supported by Nurse-led outreach teams Community Sector (Community Palliative Care Physicians) cover the entire geography of the TC LHIN Provide quality end-of-life care to those who are dying from a life-threatening illness in their homes, 7 days a week, 24 hours a day. Temmy Latner Centre 24/7 coverage of Palliative Care Physicians in the community Pediatric support in the home In-Hospital Care Program at Mount Sinai hospital Integrated team with TC CCAC Clients served by Temmy Latner Centre= clients Average number of clients per month on waiting list for Temmy Latner services = clients Average waiting list duration for Temmy Latner Centre = within two weeks Approximate number of palliative physicians (FTE) = 6.5 physicians Dorothy Ley Hospice 24/7 coverage of Palliative Care Physicians in the community Clients served by DLH palliative physicians = clients Pediatric support in the home Approximate number of palliative physicians (FTE) = 3.5 physicians Integrated team with TC CCAC Hospital Sector (Palliative Care Consult Teams) Provide consultation services to inpatient hospital teams and quality care to patients requiring a palliative care approach in the hospital. Baycrest Mount Sinai Hospital Providence Healthcare SickKids St. Joseph s Health 9 adult consult teams in TC LHIN 1 pediatric consult team in TC LHIN (SickKids) Service provided Monday Friday with Clients served by consult teams = 4,600 clients (adult and pediatric) TC LHIN PALLIATIVE CARE STRATEGY 16

17 SECTOR/SERVICE/DESCRIPTION ORGANIZATIONS PALLIATIVE CARE SERVICES OFFERED NOTABLE STATISTICS (2012/2013 DATA UNLESS OTHERWISE STATED) Centre some sites providing weekend coverage St. Michael s Sunnybrook Health Sciences Centre Most clients are seen within 24 hours of referral Toronto East General Hospital University Health Network Bridgepoint Active Health Hospital Sector (Palliative Care Units) Provides care, comfort and relief of suffering at the end of life, in a hospital setting with 24/7 supports and services. Baycrest Providence Health Care St. Michael s Sunnybrook Health Sciences Centre Toronto East General Hospital Offered through both Complex Continuing Care and Acute Care Beds 24-hour pain and symptom control for clients generally with a prognosis 3 months or less; PPS <40 for most sites Emotional and spiritual support to patients with late or end-stage malignant and nonmalignant disease Number of beds in TC LHIN = 197 Clients served by Palliative Care Units (PCU) = 2000 clients Average Wait Time for PCU Bed = average 3-4 days (CCC) and 1 day (acute care). Average Length of Stay (ALOS) = 1-3 months (CCC beds); days (acute care beds) University Health Network (TRI and PMH) Bridgepoint Active Healthcare Toronto Grace Health Centre Community Sector (Residential Hospice) Provides care, comfort and relief of suffering at the end of life, in a homelike community setting with 24/7 supports and services. Kensington Hospice 24-hour pain and symptom control for clients generally with a prognosis 3 months or less; PPS <40 for most sites Emotional and spiritual support to patients with late or end-stage malignant and nonmalignant disease Beds available = 10 beds (adults) Clients served annually = 90 clients Bereavement follow-up support for one year. TC LHIN PALLIATIVE CARE STRATEGY 17

18 SECTOR/SERVICE/DESCRIPTION ORGANIZATIONS PALLIATIVE CARE SERVICES OFFERED NOTABLE STATISTICS (2012/2013 DATA UNLESS OTHERWISE STATED) Optimizes the quality of the lives of children and their families, through the provision of integrated respite and pediatric palliative care, in a home like setting with 24/7 supports and services. Emily s House Respite care for family caregivers Acute end of life care 24-hour pain and symptom control for clients generally with a prognosis 3 months or less; PPS <40 for most sites Beds available = 10 (pediatric) Clients served annually = 10* (*NB: data is from January 2013 to January 2014) Emotional and spiritual support Transitional care Perinatal Care Community Sector (Visiting Hospice) Provides trained volunteers who provide a range of supports and services in clients homes. Hospice Toronto Better Living Health & Community Services Casey House Circle of Care The Dorothy Ley Hospice Hazel Burns Hospice Jewish Family & Child Services Philip Aziz Centre Provide a range of services which may include: Case management, In-Home Support, Anticipatory Grief and bereavement support and care, Support Groups, Day Program, Children s Programs, Complementary Therapy, Residential Care, Integrative Wellness, Legacy, Music and Expressive Arts Programs, Psycho-Social and Spiritual Care, Counselling, Education, Lending/Resource Libraries Number of Community Hospices located in TC LHIN = 3 Approximate number of clients supported by Visiting Hospices = 900 clients Approximate number of staff employed by Visiting Hospices = 25 staff Approximate number of volunteers = volunteers (attrition rate approx. 5-10% per year) (NB: data not collected from Casey House and DLH) Community Care Access Centre (CCAC) Provides palliative care supports and services to adults and children with a progressive life-limiting illness in the community. Toronto Central CCAC Palliative Care Program which includes the Integrated Client Care Program in 3 geographies in TC LHIN with plans for expansion to all geographies in 14/15. Transition planning and support from hospital to home and home to residential hospice or PCU Average number of clients supported by CCAC Nurse Practitioner Palliative Care Program each month = clients # of Palliative Clients Served by TC CCAC = 2,020 clients Care coordination, navigation, education/counseling and bereavement support Average Length of Stay (ALOS) with the TC CCAC for Palliative Clients = 6 months (median 122 days) Linkages and supports to other community resources Average age of TC CCAC Palliative 5 Nurse Practitioners involved in early Client = 72 years; TC LHIN PALLIATIVE CARE STRATEGY 18

19 SECTOR/SERVICE/DESCRIPTION ORGANIZATIONS PALLIATIVE CARE SERVICES OFFERED NOTABLE STATISTICS (2012/2013 DATA UNLESS OTHERWISE STATED) identification, advance care planning and palliative care in the community. Supports and services including: Nursing, Personal Support, Occupational, Physiotherapy and Speech Language Therapies, Dietician, Medical supplies and equipment and social work support % of TC CCAC Palliative Clients served over the age of 75 65% % of TC CCAC Palliative Care clients served with a cancer diagnosis = 80% In addition to the providers listed above, there are also several service providers in the community that offer supports to clients who are palliative as part of the continuum of care. Some of these services include; friendly visiting, emotional wellbeing, stress coping, personal support, nutrition, mobility support, social and recreational programing, support groups and caregiver supports. Assessing TC LHIN Opportunities Moving Forward: Addressing the Opportunities for Improvement in Our Current System Although we have many palliative care resources available and have made significant advances in the development of a palliative care system in the Toronto Central LHIN, there are still significant opportunities to close the gap between our current and desired future state. In order to advance this strategy, we need to understand what supports and services are currently in place that can be leveraged and where there are gaps that need to be addressed. The Declaration of Partnership identifies system gaps in 6 key areas that will form the basis for our gap analysis in the TC LHIN. The following section outlines some of the baseline information collected that has given way to the development of the TC LHIN Palliative Care Strategy. 8 The evidence gathered throughout our planning process demonstrates the presence, absence and magnitude of gaps relative to the list identified by the Declaration of Partnership. 8 Capacity survey (November, 2013 to community and health care organizations in the TC LHIN), Client & Caregiver Focus Groups (February 20, 2014 and March 18, 2014), Making a Difference: Exploring the Experiences and Needs of Caregivers Report (prepared by Hospice Toronto and First Unitarian Congregation of Toronto), January 2010, TC LHIN data sources. TC LHIN PALLIATIVE CARE STRATEGY 19

20 Table 2 - TC LHIN Palliative Care Gaps SYSTEM GAPS (AS DEFINED IN THE DECLARATION OF PARTNERSHIP) IDENTIFIED TC LHIN GAPS Gap 1: Inadequate and inequitable access to integrated, comprehensive, high quality care 197 hospital based palliative care beds - many challenges related to accessing these beds within the current system. One 10 bed adult residential hospice. In 12/13, approximately 90 clients were provided with care and service. While there is one common referral form to access palliative services in the TC LHIN, each palliative care unit and residential hospice has their own eligibility criteria, processes and protocols to access service. There are varying levels of palliative care services provided in the 36 LTCH. Visiting hospices have separate access points/policy and procedures and overlapping geographies for service delivery. There are often multiple providers providing care to clients in the community and who are accessible to clients 24/7. However there is confusion for clients/caregivers in terms of knowing who to call when. Efforts are underway to integrate care in the community to improve the experience of clients and caregivers. Limited access to PCUs/residential hospice on evenings and weekends. Gap 2: Inadequate caregiver support In 2011, Hospice Toronto consulted 91 caregivers in TC LHIN. The challenges identified by caregivers included: Knowledge and access of practical supports, Caregiver group supports, Ongoing navigation/education of community supports, Access to resources (equipment, financial, legal information etc.), One-on-One and/or Family Counseling and Diversity/role issues i.e. language, gender roles, cultural expectations. A lack of psychosocial and bereavement supports were identified as needs (TC LHIN caregiver engagement session, 2013). Need to enhance support for caregivers as part of the overall care plan. (TC LHIN caregiver engagement session, 2013). Limited access to respite services for caregivers caring for palliative loved ones at home. Gap 3: Limited and inequitable service capacity across all care settings Few models identify a lead/contact within their care setting. A need for increasing capacity through knowledge exchange, education and training has been identified across all sectors including primary care. TC LHIN PALLIATIVE CARE STRATEGY 20

21 SYSTEM GAPS (AS DEFINED IN THE DECLARATION OF PARTNERSHIP) IDENTIFIED TC LHIN GAPS Unclear whether we have the right mix of palliative care unit and hospice beds Limited dedicated pain and symptom management beds that target only cancer population. Gap 4: Lack of System Integration Despite many palliative care resources in the TC LHIN, services are not integrated and there is opportunity to improve collaboration or communication across sectors. Care teams are not formalized and collectively accountable to one another. While there is a common referral form for access to palliative services in the TC LHIN, there is a lack of o common or standardized tools/processes across sectors. In many instances Clients/Caregivers must share their story repeatedly to many providers. (TC LHIN caregiver engagement session, 2013). Clients/Caregivers have many points of contact and often there is no identified lead. There is limited collaboration between PCUs, consult teams, ED and other hospital units. Gap 5: Lack of clear accountability While there is a palliative care network it is voluntary with no formal accountability. There is a need to formalize and centralize the planning and coordination of palliative care in the TC LHIN. There currently is not a formal forum to allow clients and caregivers to participate in the planning and governance of a palliative care system. System level key performance indicators need to be developed that drive overall system performance as it relates to palliative care. Gap 6: Lack of clear public communication/ messaging While the CCAC offers information and referral to all community based services including palliative care there is a need for a more comprehensive access point to all palliative care resources in all care settings. A disproportionate number of palliative clients supported in the community have cancer as their primary diagnosis. There is an opportunity for earlier identification of patients with chronic disease as being palliative. What Will Success Look Like? The Declaration of Partnership challenges our entire system to move towards a common palliative care vision. The Declaration of Partnership sets individual and collective commitments, common priorities and appropriate actions to optimize palliative care in Ontario. The goals of these actions are ultimately to improve the experience of the client and caregiver, the quality of care and the value the system delivers. The Declaration identifies the next steps to provide equitable access to safe, comprehensive and high quality palliative care and support for individuals and their families across the province and calls upon individual LHINs to commit to implementing the recommended actions both short and long-term. TC LHIN PALLIATIVE CARE STRATEGY 21

22 Figure 4 (left) identifies a few of the core strategic tenets of the Declaration of Partnership and the top outcomes/goals that we should all collective seek to achieve. Figure 4 - Declaration of Partnership CHRONIC DISEASE FRAMEWORK: MODEL FOR PALLIATIVE CARE The Declaration of Partnership identifies a model of care that builds on chronic disease management and palliative care models to address the palliative care needs of all clients and caregivers. This approach envisages a care and support system that wraps delivery around the individual and their family and responds in a coordinated way to their goals, needs and personal situation. Care is delivered by a virtually integrated inter-professional team and each person has a coordinated and continually updated care plan that considers all settings in which the patient receives care. 9 Described below, this chronic disease framework 10 outlines key elements to achieve an integrated model for palliative care. The TC LHIN has adopted this model as the foundation for planning and the development of recommendations for a regional palliative care strategy. Figure 5 - Hospice Palliative Care Model 9 Advancing High Quality, High Value Palliative Care in Ontario: A Declaration of Partnership and Commitment to Action, p Modified (2011, 2013) from the Canadian Hospice Palliative Care Association, A Model to Guide Hospice Palliative Care, Palliative Care Association, A Model to Guide Hospice Palliative Care, 2002 TC LHIN PALLIATIVE CARE STRATEGY 22

23 In moving to this new model, the following key elements are needed: 1. A full continuum of care settings and services ; 2. A clearly defined care program that is founded on a palliative care philosophy and approach in each care setting where individuals die; 3. Sectors and services linked by common practices, processes, structures and understanding of the palliative care philosophy; 4. Enough trained professionals and trained volunteers are available; 5. A clearly defined and communicated accountability; and, 6. Funding models, guidelines and policy directions to support an integrated system. The TC LHIN s Palliative Care Strategy will need to address each of these elements to advance this model of care. The Toronto Central LHIN Palliative Care Strategy The Toronto Central LHIN has a long history of delivering palliative care services and a strong foundation of comprehensive palliative care services. Building on this, the following section will outline the key recommendations of the work streams and Steering Committee with respect to the work required to achieve our desired vision and model for palliative care and will articulate how this strategy will address the identified gaps in the system for our clients and caregivers. Our Strategy, In Context It is well recognized any palliative care strategy for the TC LHIN must recognize both the magnitude of change required within the system, but also be cognizant and aligned with the many other changes and initiatives currently underway in the TC LHIN and the broader health sector. The Ontario health system continues to undergo its own significant transformation and the TC LHIN has continued to drive significant advances in service planning and delivery. One clear focal point of the TC LHIN has been the implementation of the Health Links initiative; an initiative focused on managing the care of those 1-5% of patients who consume a disproportionate amount of resources within the healthcare system. In developing this strategy we have taken into consideration the Health Links initiatives and have assessed that our strategy is both complementary and non-duplicative of these efforts. Many of the high needs patients that serve as a focal point for Health Links are challenged by chronic, life-limiting illness and as such, will eventually enter the palliative care system. Our strategy recognizes this fact and seeks to leverage specific links with primary care and primary care practitioners through Health Links to ensure that patients and caregivers receive the right care, in the right setting at the right cost. Another focal point for the health care system has been the shift of patients from acute care to community or home settings. The palliative care strategy recognizes the importance of this shift in the care paradigm and has both community and home care as the basis for its care philosophy. While patients are best supported when their choices are valued and respected, palliative care aims to de-institutionalize care and put people as close to home as possible. TC LHIN PALLIATIVE CARE STRATEGY 23

24 The following table (Table 3) provides the detail of the TC LHIN Palliative Care Strategy. Within this strategy are a number of initiatives that we feel will address the key elements of the palliative care model, address gaps in services identified in the Declaration of Partnership and impact the key metrics of improving the client and caregiver experience and reducing the number of days in hospital. These initiatives build on some of the existing initiatives in our LHIN such as the CCAC Integrated Client Care Program (ICCP), Palliative Care Unit Bed tracking system and a common palliative care referral form to name a few. A summary table (Table 4) after this section provides a high level overview of the key strategies and initiatives. TC LHIN PALLIATIVE CARE STRATEGY 24

25 TC LHIN Palliative Care Strategy Table 3 - TC LHIN Palliative Care Strategy (Detail) STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS INITIATIVE TIMELINES Improve Early Identification of Clients and Advance Care Planning in all care sectors Clients and their families have equitable access to integrated, comprehensive, high quality palliative care Initiative #1: In-patient hospital teams integrate the 'surprise question' into patient rounds both at admission and at discharge. This initiative will leverage existing structures in hospital to test surprise questions within the general medicine unit, (i.e. would you be surprised if this patient died: (a) during this admission? and, (b) within the next year? ) A standardized approach to no responses would be developed, tested and measured at one or two sites. Findings would be shared and a plan to spread to other hospital sites would be developed. GAPS ADDRESSED By identifying clients earlier, it is anticipated that they will be linked to appropriate palliative care services earlier, thereby ensuring clients are receiving care in the right place at the right time. IMPACT ON PATIENT/CAREGIVER EXPERIENCE By identifying patients living with an advanced, life limiting illness earlier, clients and families have the opportunity to discuss the benefits of a palliative care approach and what is important to them; placing them at the centre of their care. It also enables clients to be connected to appropriate services earlier in the continuum. Working group to identify standardized approach (criteria/process) Project management to support implementation at selected sites Year One (2014/15) Q2planning, Q3 (14/15) Q3 (2015/16) implementation/testing Year Two (2015/16) Q4 spread to other hospitals and to other care settings IMPACT ON ADMITTED HOSPITAL DAYS Earlier identification and linkages to palliative care supports and services for the admission group will ensure care aligns with patients goals and decrease acute care days and critical care admission. Earlier identification and linkages to palliative care supports and services in the community for the discharge group will help better support clients in their homes and reduce unplanned ED visits and acute care admissions/re-admissions. TC LHIN PALLIATIVE CARE STRATEGY 25

26 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS INITIATIVE TIMELINES Initiative #2: Identify opportunities for nurse practitioners to partner with primary care and community agencies serving marginalized populations. By leveraging existing capacity, the CCAC nurse practitioner (NP) program would work with the TC LHIN and other stakeholders to identify primary care physicians and community support agencies serving marginalized populations that could benefit from NP support to identify and connect clients to palliative care services. Once identified, information about the role of the nurse practitioner and palliative supports and services in the community would be provided to these partners. A plan would then be developed to: 1. Identify how NPs could support community agencies to identify and support clients at risk for palliative care services; and GAPS ADDRESSED Improves access to palliative care services for populations not currently accessing system. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Marginalized populations are not typically identified for palliative care supports and services and, when they are, this usually occurs at the end-of-life. By identifying and linking clients to palliative care earlier there is the opportunity to support clients care needs, enhancing quality of life. IMPACT ON ADMITTED HOSPITAL DAYS Early identification ensures clients are linked to appropriate palliative care services and supports, which can in turn reduce the need for unplanned ED visits and hospital admissions. To be confirmed following assessment of outreach impact. Year One (2014/15) Q2- Q4 identification and outreach 2. Increase primary care partnerships in the community. Initiative #3: Develop a plan to ensure early identification and advance care planning across all care settings. This initiative will build on the lessons learned with early identification and advance care planning in the first two initiatives. The intent will be to develop and roll out expectations for all care providers across all care settings regarding early identification and advance care planning for appropriate populations GAPS ADDRESSED By identifying clients earlier, it is anticipated that they will be linked to appropriate palliative care services earlier, thereby ensuring clients are receiving care in the right place at the right time. IMPACT ON PATIENT/CAREGIVER EXPERIENCE By identifying patients living with an advanced, life limiting illness earlier, clients and families have the opportunity to discuss the benefits of a palliative care approach and what is important to them; placing them at the centre of their care. It also enables clients to be connected to appropriate services earlier in the continuum. To be confirmed following detailed scoping of the initiative Year Two (2015/16) Q1-4 - planning Year Three (2016/17) Q1-4 implementation TC LHIN PALLIATIVE CARE STRATEGY 26

27 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS IMPACT ON ADMITTED HOSPITAL DAYS Earlier identification and linkages to palliative care supports and services for patients across all care settings will ensure care aligns with patients goals and decrease hospital admissions and acute care days. Earlier identification and linkages to palliative care supports and will help better support clients in their homes and reduce unplanned ED visits and acute care admissions/re-admissions. INITIATIVE TIMELINES Increase Access to Palliative Care Clients and their families have equitable access to integrated, comprehensive, high quality palliative care Initiative #4: Leverage existing access models to develop a coordinated system for palliative care information and referral. Phase one of this initiative will explore centralized information and referral models in the Toronto Central LHIN (e.g. The Toronto Central CCAC Information and Referral and CNAP the Community Navigation and Access Program. Information needs of end users and a standardized and coordinated system for referrals will be examined as part of this review. Recommendations regarding design and implementation of a palliative care information and referral system will occur in phase two. GAPS ADDRESSED Improved access to palliative care information in the TC LHIN and timely referrals to resources. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Clients and families have indicated that they are challenged navigating the system and are uncertain about the palliative care services available in the Toronto Central LHIN. A central repository of information and a coordinated access system will help to address these concerns and support access to services in a timely and coordinated way. To be confirmed following assessment and design of model. Resources will be required to support the planning and implementation process. Year Two (2015/16): Q1 Q4 Assessment and design Year Three (2016/17): Q 1- Q2 Implementation IMPACT ON ADMITTED HOSPITAL DAYS Understanding what resources are available and having timely access to those resources in the community will support keeping clients home. Initiative #5: Build capacity within the visiting hospice sector by identifying and standardizing core and specialized hospice services and developing a centralized volunteer training program. In phase one of this initiative, a survey of visiting hospice programs and services in the TC LHIN will be conducted. With the support of a hospice working group, a core set of services among visiting hospices s will be established. Duplications and gaps in specialized services will be GAPS ADDRESSED Equitable and adequate access to visiting hospice supports and services. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Clients and families will have equitable access to visiting hospice services and Project management support for working group Resources (1FTE) to support training program (in collaboration with Central and Mississauga Halton LHINS given the number of Year One (2014/15): Q2-Q3 planning, Q4 implementation standardization/services/core policies Centralized training program Year Two (2015/16): Q1-2 planning and Q3-4 TC LHIN PALLIATIVE CARE STRATEGY 27

28 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS reviewed and a plan will be supports that addresses their needs. developed to ensure equitable access to these services, regardless of where individuals live in the TC LHIN. In phase two of this initiative, a centralized volunteer training program will be developed to ensure consistency among volunteers and support capacity building across the TC LHIN. IMPACT ON ADMITTED HOSPITAL DAYS Building capacity to support clients in the community and establishing clear program structures will increase accessibility to these programs, better supporting clients to remain out of hospital and supporting them more effectively upon discharge from hospital. visiting hospice located in their LHINs serving TC LHIN residents) INITIATIVE TIMELINES implementation In both phases, collaboration with the GTA LHINS will be important in this planning. Initiative #6: Implement RM&R solution for palliative care inpatient beds and resident hospice beds. This initiative will focus on the planning and implementation of a centralized system to monitor and match clients to palliative care beds in the TC LHIN. The Resource Matching and Referral (RM&R) solution will be leveraged for this purpose. GAPS ADDRESSED Improved system integration and access to timely information about and referral to palliative care beds. IMPACT ON PATIENT/CAREGIVER EXPERIENCE For those wanting to receive end-of-life care in a hospital palliative care unit or residential hospice, information about bed availability and options can be discussed in a proactive way, reducing crisis and supporting better client/family experiences. Resources for this initiative have been already dedicated. Year One (2014/15): Q1 - Q2 planning and design phase. Q3 - Q4 implementation IMPACT ON ADMITTED HOSPITAL DAYS Access to real time information about bed availability in the TC LHIN for all health care sectors will support effective and timely transitions to palliative care units/residential hospice, avoiding ER, potential hospital admissions and alternative level of care days. TC LHIN PALLIATIVE CARE STRATEGY 28

29 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS Strategy #3: GAPS ADDRESSED Enhance Support for The need for additional psychosocial and Caregivers to help grief/bereavement supports capacity Relieve across the LHIN. burden/stress Clients and caregivers are fully informed and caregivers are aware of and have access to services to support them in their role Initiative #7: Complete a gap analysis of programs and services available to support psychosocial and grief/bereavement needs of clients, caregivers and families. Identify opportunities to enhance these services as part of integrated care teams. Access to psychosocial and bereavement supports in the TC LHIN are limited. In this initiative, a gap analysis will be conducted of the programs and services available to support psychosocial and grief/bereavement needs of clients and families to better understand current gaps and identify where services are needed. Opportunities to integrate psychosocial supports within palliative care teams will be explored and tested. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Providing equitable access to these supports will help address unmet needs, and enhance quality of life for clients and caregivers. Additionally, an integrated care team approach will help to ensure that care aligns with client goals of care. Planning for and linking family members to grief and bereavement supports in a consistent manner will enhance the family s experience. IMPACT ON ADMITTED HOSPITAL DAYS By building capacity in the community to better support clients and caregivers through an integrated team approach, it is anticipated that clients will be able to remain in the community longer, thereby reducing ED visits and hospitalizations. To be confirmed following gap analysis review. It is expected that additional funding for psychosocial resources and bereavement supports will be required INITIATIVE TIMELINES Year One (2014/15): Q1-Q2 planning and gap analysis; Q3-4 implementation TC LHIN PALLIATIVE CARE STRATEGY 29

30 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS Strategy #4: Build community capacity by enhancing Integrated Palliative Care Teams For the client and family, care delivery is seamless, connected and continuous for across care settings Initiative #8: Pursue integration opportunities to optimize efficient delivery and capacity of services and supports in community and across care settings, including primary care. The first phase of this initiative will leverage existing community palliative care teams and the CCAC ICCP Palliative initiative to build/expand geographically based integrated community palliative care teams across the LHIN, defining roles and responsibilities of all partners, and will include a dedicated navigator for clients and families. Common, standardized processes and practices will be explored both in the community and across care settings to support further integration. In phase two, the development of a coordinated system for after-hours support will be tested and expanded across the TC LHIN. GAPS ADDRESSED Clients and families in surveys and in focus groups have indicated that they have many providers coming into their homes, not always working together as a team resulting in clients having to repeat their stories to each provider. As clients transition from one care setting to the next, there is often a breakdown in communication across care providers and services are not always well coordinated. IMPACT ON PATIENT/CAREGIVER EXPERIENCE In integrated care team settings, clients and families will experience provider and service continuity, 24/7 dedicated support, more seamless transitions across care settings and renewed confidence in a care team that is constructed around their needs. Project management support and funding to support 24/7 access model INITIATIVE TIMELINES Year One (2014/15): Q1-Q2 Realignment of integrated teams, Q3-4 roles and responsibilities defined Year Two (2015/16): Q1-2 - develop 24/7 model and identify integration opportunities across care settings; Q3-Q4 implementation of 24/7 IMPACT ON ADMITTED HOSPITAL DAYS Integrated care teams will have formalized processes and practices in place that will ensure care aligns with clients goals, supporting clients effectively in their home. Transitions and communication across care settings will be more integrated. Proactive, coordinated and integrated 24/7 care will help reduce clients and families accessing the hospital for support as they will be able to access a coordinated system of care in the community. TC LHIN PALLIATIVE CARE STRATEGY 30

31 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS Strategy #5: Strengthen Supports in LTC Clients with a progressive, life limiting illness and their families are supported in their home/community Initiative #9: Build capacity with Long Term Care Homes staff through educational opportunities and by leveraging education and supports from the Nurse Lead Outreach Teams (NLOT) and Palliative Pain and Symptom Management Consultants (PPSMC). A survey identifying current challenges and improvement activities/opportunities in LTCHs to support effective delivery of palliative care will be initiated. Training and educational needs will be identified and a plan will be developed and implemented leveraging existing educational tools as well as the support of the NLOT and PPMSMC teams. GAPS ADDRESSED There are varying levels of palliative care supports provided in LTCHs in the TC LHIN. By understanding the current state, appropriate resources to support the LTCH will identified leveraging existing tools and supports. This will assist LTCHs to better support their clients to die at home if they choose. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Residents and families will be knowledgeable and confident about the palliative care they are receiving from LTC staff. Residents will have access to a broader range of palliative care services within the LTCH. IMPACT ON ADMITTED HOSPITAL DAYS LTCH teams will have the knowledge, skills and access to specialized services to support residents in need of palliative care to receive services in the home and to die in the home if they choose. This will reduce unnecessary transfers to the hospital at end-of-life. To be confirmed following survey assessment. Resources will be required to support the planning and implementation process. INITIATIVE TIMELINES Year One (2014/15): Q2-3 Survey/analysis, Q4 plan development Year Two (2015/16): Q1-4 implementation Initiative #10: Improve communication between Long Term Care teams, outreach supports, residents and caregivers through palliative care rounds and formalized advance care planning and goals of care discussions from point of admission. A model of integrated palliative care supports will be developed and tested in LTCH. The model will focus on how LTCH physicians and staff work with residents, families and outreach teams (NLOT and PPSMC) to provide palliative care supports in LTCH from the point of admission. GAPS ADDRESSED This initiative will focus on building palliative care capacity within LTCHs to better support residents within the home and avoid hospital transfers. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Residents will be identified earlier and have the benefit of a palliative approach to care. Access to specialized supports to address pain and other symptoms will enhance this experience. IMPACT ON ADMITTED HOSPITAL DAYS Access to specialized care teams and resources will reduce the need for ER and hospital interventions, impacting ER visits and hospital lengths of stay. Project management resources will be required. Year One (2014/15): Q2 model development, Q3-Q4 testing TC LHIN PALLIATIVE CARE STRATEGY 31

32 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS INITIATIVE TIMELINES Initiative #11: Conduct an analysis of the gaps, challenges and unique needs for palliative care in LTC In this initiative a gap analysis will be conducted to better understand how to leverage existing supports and resources while identify gaps where services and supports are needed. GAPS ADDRESSED An understanding of the challenges and unique needs for palliative care in LTC will be identified. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Having equitable access to supports and resources within LTCH will enhance the quality of life for clients and caregivers. To be confirmed following gap analysis review. Year One (2014/15): Q2-Q4 IMPACT ON ADMITTED HOSPITAL DAYS Clients receiving palliative care supports and services in LTC will help to minimize the need to receive many of these services in hospital. Strategy #6: Improve Emergency Room Avoidance and Reduce Hospital Days Clients with a progressive, life limiting illness and their families are supported in their home/community Initiative #12: Build capacity of ER staff to better identify and support palliative clients in the ER and leverage existing resources. In this initiative a planning day will be developed with the 7 ED sites in Toronto focused on how best to work collaboratively within each site to identify and support palliative clients in the ED. Stemming from this day a model to improve palliative care supports in the ED leveraging existing resources will be developed and tested. GAPS ADDRESSED Earlier identification of palliative clients in the ED and improving access to palliative care services. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Clients are identified, receiving timely palliative care supports and are transitioned effectively to the most appropriate place of care, minimizing time in the ER. Project management resources will be required. Year Two (2015/16): Q1-Q2 planning; Q3-Q4 implementation IMPACT ON ADMITTED HOSPITAL DAYS ED staff will be aware of palliative care supports and, as a result, clients will be transitioned effectively from the ED to more appropriate care settings. TC LHIN PALLIATIVE CARE STRATEGY 32

33 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS Initiative #13: Leverage and GAPS ADDRESSED expand EMS partnership EMS will be aware of clients who are with integrated care teams palliative and linked to community care to support clients in the teams and, as a result, will be better home and avoid transfer to positioned to ensure care aligns with the ED. clients goals. In the first phase of this initiative, an information/transfer kit and client registry will be tested identifying for EMS clients linked to community palliative care teams. Where appropriate, communication and care planning between EMS and physician will occur to support the client to remain at home. For those clients requiring transfer to hospital, EMS will have information/transfer kit accompanying them ensuring pertinent information about their care needs and community care team are identified. In phase two, spread and training for EMS staff, community teams and clients and families. IMPACT ON PATIENT/CAREGIVER EXPERIENCE Clients care needs may be addressed through collaboration between EMS and community care team, reducing the stress for clients and caregivers regarding transfer to ED. IMPACT ON ADMITTED HOSPITAL DAYS As EMS and community teams work collaboratively, developing care plans in real time that support clients to remain at home, wherever possible, significant impact potential to reduce ED visits and admissions will be realized. Project costs (associated with training materials and transfer kits). INITIATIVE TIMELINES Year One (2014/15): Q2-Q3 planning, Q4 testing Year Two (2015/16): Q1-4 implementation and spread Strategy #7: Establish Core Governance Structures and Accountabilities for System Initiative #14: Develop and implement a TC LHIN Palliative Care governance and accountability structure consistent with a Council/Program Structure. Initiative detail provided in report under Governance. Detailed impact analysis provided in report under Governance Council/Program Administrative Lead (1 FTE) Council/Program Clinical Lead (.4FTE) Council/Program Admin Support (1 FTE) Year One (2014/15) Q1-Q2 Strategy #7: Develop Palliative Care Education and Awareness Programs targeted at key audiences. Initiative #15: Complete gap analysis of education and training gaps within and across the various sectors Initiative detail provided in report under Education. 1 FTE coordinator Year One (2014/2015) Q2 Planning, Q3-Q4 Implementation TC LHIN PALLIATIVE CARE STRATEGY 33

34 STRATEGY INITIATIVE INITIATIVE DETAIL INITIATIVE IMPACT ANALYSIS RESOURCE REQUIREMENTS Strategy #9: Initiative #16: Conduct Additional planning will need to be Impact analysis to be determined upon Capacity Planning to analysis to support capacity undertaken in the following areas: completion of Capacity Analysis. meet future planning to meet future palliative care needs needs including the needs including the needs of marginalized of marginalized populations populations An analysis of the gaps, unique needs and challenges with access for aboriginal, homeless and other marginalized populations To be confirmed following detailed scoping INITIATIVE TIMELINES Year Two (2015/16) Q1-Q4 An analysis and development of recommendations for the appropriate allocation of palliative care services in the TC LHIN including residential hospice beds and palliative care units. Analysis of the capacity in primary care and the medical model to support the future needs for palliative care TC LHIN PALLIATIVE CARE STRATEGY 34

35 Table 4 - TC LHIN Palliative Care Strategy (Summary) STRATEGY Strategy #1: Improve Early Identification of Clients and Advance Care Planning in all Sectors YEAR 1 & 2 INITIATIVE (Where we will start) Initiative #1: In-patient hospital teams integrate the 'surprise question' into patient rounds both at admission and at discharge. Initiative #2: Identify opportunities for nurse practitioners to partner with primary care and community agencies serving marginalized populations. Initiative #3: Develop a plan to ensure early identification and advance care planning across all care settings. Strategy #2: Increase Access to Palliative Care Initiative #4: Leverage existing access models to develop a coordinated system for palliative care information and referral. Initiative #5: Build capacity within the visiting hospice sector by identifying and standardizing core and specialized hospice services and developing a centralized volunteer training program. Initiative #6: Implement RM&R solution for palliative care inpatient beds and resident hospice beds. Strategy #3: Enhance Support for Caregivers to Help Relieve Burden/Stress Initiative #7: Complete a gap analysis of programs and services available to support psychosocial and grief/bereavement needs of clients, caregivers and families. Identify opportunities to enhance these services as part of integrated care teams Strategy #4: Build Community Capacity by Enhancing Integrated Care Teams Initiative #8: Pursue integration opportunities to optimize efficient delivery and capacity of services and supports in community and across care settings, including primary care. Strategy #5: Strengthen Supports in LTC Initiative #9: Build capacity with Long Term Care Homes staff through educational opportunities and by leveraging education and supports from the Nurse Lead Outreach Teams (NLOT) and Palliative Pain and Symptom Management Consultants (PPSMC). Initiative #10: Improve communication between Long Term Care teams, outreach supports, residents and caregivers through palliative care rounds and formalized advance care planning and goals of care discussions from point of admission. Initiative #11: Conduct an analysis of the gaps, challenges and unique needs for palliative care in LTC. Strategy #6: Improve Emergency Room Avoidance and Reduce Hospital Days. Initiative #12: Build capacity of ER staff to better identify and support palliative clients in the ER and leverage existing resources. Initiative #13: Leverage and expand EMS partnership with integrated care teams to support clients in the home and avoid transfer to the ED. TC LHIN PALLIATIVE CARE STRATEGY 35

36 STRATEGY Strategy #7: Establish Core Governance Structures and Accountabilities for System YEAR 1 & 2 INITIATIVE (Where we will start) Initiative #14: Develop and implement a TC LHIN Palliative Care governance and accountability structure consistent with a Council/Program Structure. Strategy #8: Develop Palliative Care Education and Awareness Programs Targeted at Key Audiences. Initiative #15: Complete a gap analysis of education and training gaps within and across the various sectors Strategy #9: Capacity Planning to Meet Future Palliative Care Needs Including the Needs of Marginalized Populations Initiative #16: Conduct analysis to support capacity planning to meet the future palliative care needs including the needs of marginalized populations. Addressing the Gaps In reviewing these strategies, the Steering Committee confirmed that they address one or more of the gaps identified in the TC LHIN Gap Analysis. The following table demonstrates how each initiative can be linked back to a specific gap. Table 5 - TC LHIN Gaps Addressed (By Initiative) INITIATIVE Initiative #1: In-patient hospital teams integrate the 'surprise question' into patient rounds both at admission and at discharge. Initiative #2: Identify opportunities for nurse practitioners to partner with primary care and community agencies serving marginalized populations. TC LHIN GAP ADDRESSED Lack of clear public communication/messaging Inadequate and inequitable access to integrated, comprehensive, high quality care. Initiative #3: Develop a plan to ensure early identification and advance care planning across all care settings. Initiative #4: Leverage existing access models to develop a coordinated system for palliative care information and referral. Initiative #5: Build capacity within the visiting hospice sector by identifying and standardizing core and specialized hospice services and developing a centralized volunteer training program. Initiative #6: Implement RM&R solution for palliative care inpatient beds and resident hospice beds. Initiative #7: Complete a gap analysis of programs and services available to support psychosocial and grief/bereavement needs of clients, caregivers and families. Identify opportunities to enhance these services as part of integrated care teams. Initiative #8: Pursue integration opportunities to optimize efficient delivery of services and supports in community and across care settings, including primary care. Inadequate and inequitable access to integrated, comprehensive, high quality care. Lack of clear public communication/messaging. Inadequate caregiver support. Lack of System Integration. Inadequate caregiver support. Lack of System Integration. Initiative #9: Build capacity with Long Term Care Homes staff through educational opportunities and by leveraging education and supports from the Nurse Lead Outreach Teams (NLOT) and Palliative Pain and Symptom Management Consultants (PPSMC). Limited and inequitable service capacity across all care settings. TC LHIN PALLIATIVE CARE STRATEGY 36

37 Initiative #10: Improve communication between Long Term Care teams, outreach supports, residents and caregivers through palliative care rounds and formalized advance care planning and goals of care discussions from point of admission. Initiative #11: Conduct an analysis of the gaps, challenges and unique needs for palliative care in LTC. Initiative #12: Build capacity of ER staff to better identify and support palliative clients in the ER and leverage existing resources. Initiative #13: Leverage and expand EMS partnership with integrated care teams to support clients in the home and avoid transfer to the ED. Initiative #14: Develop and implement a TC LHIN Palliative Care governance and accountability structure consistent with a Council/Program Structure. Initiative #15: Complete gap analysis of education and training gaps within and across the various sectors Initiative #16: Conduct analysis to support capacity planning to meet future needs including the needs of marginalized populations Inadequate and inequitable access to integrated, comprehensive, high quality care. Limited and inequitable service capacity across all care settings. Limited and inequitable service capacity across all care settings. Lack of System Integration. Lack of clear accountability. Limited and inequitable service capacity across all care settings. Inadequate and inequitable access to integrated, comprehensive, high quality care. The Magnitude of Change At the core of our strategy is recognition that there is an opportunity not only to deepen our alignment with the larger system transformation in healthcare and initiatives like Health Links, but also to fundamentally question and transform the organization and delivery of palliative care services. Achieving our vision for a robust palliative care system in the TC LHIN to meet future needs will require transformational, systemic change. There are identified gaps in the TC LHIN. These gaps not only exist within and between organizations, but also at the planning, policy and funding levels of the system as well. We recognize that there is also a need to fundamentally evaluate what services we have and how they are organized to best delivery care and services to the TC LHIN population. It should be noted however that our planning efforts are "just the beginning of our system transformation agenda. While our planning horizon has been acknowledged to be 1-2 years, many of the recommendations provided in the strategy are foundational in nature and will set the stage for a larger evaluation and transformation of the key elements of the TC LHIN palliative care system. Following this foundation setting, we anticipate that the Palliative Care system can then begin to focus on the specific needs of subpopulations such as the under-housed, Francophone and aboriginal populations of the TC LHIN. By focusing on the key strategies and initiatives outlined in this document, we will begin to introduce common language and processes into the TC LHIN Palliative Care system that will serve as a catalyst for larger system shifts moving forward. The following diagram highlights how some of our immediate activities will be followed by other planning initiatives over time as the system continues to develop and refine its focus: TC LHIN PALLIATIVE CARE STRATEGY 37

38 Strategic Initiatives Year 1 & 2 Improving Early Identification and advance care planning Increasing Access to Palliative Care Enhancing Supports for Caregivers Enhancing Integrated Palliative Care Teams Strengthening Supports in LTC Improving Emergency Room Avoidance and Reduce Hospital Days Establishing Governance Structure and System Accountabilities & Performance Measures Developing Palliative Care Education and Awareness Planning Initiatives Year 2 and Beyond... Increasing access to Aboriginal and Marginalized Populations Strengthening Long Term Care Capacity Planning Improving Primary Care Engagement and Model Development Understanding Broader System Resources and Capacity We are confident that these initiatives will enable us to address some of our key performance measures (e.g. improved client and caregiver experience, reduced hospital days), however the results will not be immediate. The intent of our strategy is to build a coordinated and integrated system of palliative care, and, in doing so, there will need to be a significant cultural, strategic and operational change that will go well beyond our initial work. With this in mind, these initiatives are meant to serve as the foundation for this systemic change. They are representative of key areas of focus and in alignment with both the recommendations of the Declaration of Partnership and the overall system strategy of the TC LHIN. It should also be acknowledged that this strategy is focused on the adult palliative care population and has not considered or addressed the pediatric population of the TC LHIN. This is intentional as there is a provincial focus on pediatric palliative care which we will continue to be linked to, and aligned with, as we move forward. What can we expect from the recommended strategy? Described in our own clients words, our strategy will create a palliative care system that preserves dignity, exudes compassion and enables choice for clients and caregivers. These initiatives span all sectors to build a system that supports cross-sectoral collaboration and integration. This is about developing a system where care is seamless, clients are connected to services earlier and providers work better together to enhance access to these services. The outcomes we have described will enable transformation, however, a number of critical success factors will need to be addressed in order to effect transformational change: Funding Reform it is well known and demonstrated that funding mechanisms within the Palliative Care sector are not flexible enough to match or track to client movement or care settings. For TC LHIN PALLIATIVE CARE STRATEGY 38

39 example in the Long Term Care sector, clients do not have access to the same resources as clients anywhere else in the system (e.g. access to medication pumps). This translates into LTC homes not being able to provide the basics for their palliative clients. To be successful in providing a consistent, quality care experience for all clients in the TC LHIN regardless of the care setting then funding equalization must be addressed. Information Technology and Management throughout the course of the development of this strategy, it was regularly cited that there is a paucity of data relating to this population and a lack of integrated systems for the tracking, monitoring and reporting of statistics. To enable many of the strategies identified in this document, there will need to be a directed effort to improving the technical and information management infrastructure that supports the Palliative Care system. It should also be noted that information management systems are required across the care continuum in order to ensure that information is more appropriately collected and shared between providers resulting in a more seamless system. Educational Reform although this document has committed to driving knowledge generation, knowledge transfer and education within the existing system, there needs to be reform with respect to how palliative care is taught and incorporated into the learning curricula of schools, universities and residency programs. Cultural Change perhaps the most elusive and difficult to define change required is cultural. Throughout our consultations, it was identified that clinicians have difficulty accepting palliative care as an appropriate course of treatment. Many see it as a personal failure in caring for their clients. As well, for many patients, we heard that palliative care can represent a defeat or a perceived giving up on their care. As part of this overall initiative, it will be necessary to look at how the stigma of palliative care can be reduced. Without a paradigm shift in this thinking, palliative care will continue to be considered a last resort and not a meaningful care option earlier in the continuum of care. In the following table (Table 5) we analyze how these initiatives align with our palliative care model and effectively address the gaps identified in the Declaration of Partnership to achieve these outcomes. As this table shows, all sectors are impacted by our strategy. TC LHIN PALLIATIVE CARE STRATEGY 39

40 In each care setting there is a clearly defined care program founded on a palliative philosophy & approach. Sectors & services linked by common practices, processes, structures and understanding of the palliative care philosophy. Enough trained professionals and trained volunteers are available. Accountability is clearly defined and communicated Funding models, guidelines and policy directions support an integrated system. Inadequate and inequitable access to integrated, comprehensive, high quality care. Inadequate caregiver support. Limited and inequitable service capacity across all care settings. Lack of System Integration. Lack of clear accountability. Lack of clear public communication/messaging Table 6- Alignment of Strategy to Model of Care and Gaps MODEL OF CARE ELEMENTS ADDRESSED GAPS ADDRESSED (AS DEFINED IN THE DECLARATION OF PARTNERSHIP) TC LHIN STRATEGY INITIATIVE SECTOR IMPACTED Strategy 1: Improve early identification of clients 1. In-patient hospital teams integrate the 'surprise question' into patient rounds at admission and at discharge. Acute Strategy 2: Increase access to palliative care 2. Identify opportunities for NPs to partner with primary care and community agencies serving marginalized populations 3. Develop a plan to ensure early identification and advance care planning across all care settings. 4. Leverage existing access models to develop a coordinated system for palliative care information and referral. Community All Sectors All Sectors 5. Build capacity within the community hospice sector by identifying and standardizing core and specialized hospice services and developing a centralized volunteer training program. Community TC LHIN PALLIATIVE CARE STRATEGY 40

41 In each care setting there is a clearly defined care program founded on a palliative philosophy & approach. Sectors & services linked by common practices, processes, structures and understanding of the palliative care philosophy. Enough trained professionals and trained volunteers are available. Accountability is clearly defined and communicated Funding models, guidelines and policy directions support an integrated system. Inadequate and inequitable access to integrated, comprehensive, high quality care. Inadequate caregiver support. Limited and inequitable service capacity across all care settings. Lack of System Integration. Lack of clear accountability. Lack of clear public communication/messaging MODEL OF CARE ELEMENTS ADDRESSED GAPS ADDRESSED (AS DEFINED IN THE DECLARATION OF PARTNERSHIP) TC LHIN STRATEGY INITIATIVE SECTOR IMPACTED 6. Implement RM&R solution for palliative care inpatient beds and residential hospice beds. All Sectors Strategy 3: Enhance support for caregivers to help relieve burden/stress 7. Complete a gap analysis of programs and services available to support psycho-social and grief/ bereavement needs of clients, caregivers and families. Identify opportunities to enhance these services as part of integrated care teams. Client/Caregivers Strategy 4: Enhance integrated palliative care teams 8. Pursue integration opportunities to optimize efficient delivery of services and supports in community and across sectors. All Sectors Strategy 5: Strengthen supports in LTC 9. Build capacity with LTCH staff by leveraging education and supports from NLOT and PPSMC teams. LTC 10. Improve communication between LTC care team, outreach supports, residents and caregivers through palliative care rounds and LTC TC LHIN PALLIATIVE CARE STRATEGY 41

42 In each care setting there is a clearly defined care program founded on a palliative philosophy & approach. Sectors & services linked by common practices, processes, structures and understanding of the palliative care philosophy. Enough trained professionals and trained volunteers are available. Accountability is clearly defined and communicated Funding models, guidelines and policy directions support an integrated system. Inadequate and inequitable access to integrated, comprehensive, high quality care. Inadequate caregiver support. Limited and inequitable service capacity across all care settings. Lack of System Integration. Lack of clear accountability. Lack of clear public communication/messaging MODEL OF CARE ELEMENTS ADDRESSED GAPS ADDRESSED (AS DEFINED IN THE DECLARATION OF PARTNERSHIP) TC LHIN STRATEGY INITIATIVE SECTOR IMPACTED formalized advanced care planning and goals of care discussions from point of admission. Strategy 6: Improve ER avoidance & reduce hospital days 11. Conduct an analysis of the gaps, challenges and unique needs for palliative care in LTC. 12. Build capacity of ER staff to better identify and support palliative clients in the ER and leverage existing resources (e.g. hospital palliative consult teams). LTC Acute 13. Leverage and expand EMS partnership with integrated care teams to support clients in their home and avoid transfer to ER. All Sectors Strategy 7: Governance 14. Implement revised governance structure for Palliative Care system. All Sectors Strategy 8: Public Awareness and Education 15. Complete gap analysis of education and training gaps within and across the various sectors. All Sectors TC LHIN PALLIATIVE CARE STRATEGY 42

43 In each care setting there is a clearly defined care program founded on a palliative philosophy & approach. Sectors & services linked by common practices, processes, structures and understanding of the palliative care philosophy. Enough trained professionals and trained volunteers are available. Accountability is clearly defined and communicated Funding models, guidelines and policy directions support an integrated system. Inadequate and inequitable access to integrated, comprehensive, high quality care. Inadequate caregiver support. Limited and inequitable service capacity across all care settings. Lack of System Integration. Lack of clear accountability. Lack of clear public communication/messaging MODEL OF CARE ELEMENTS ADDRESSED GAPS ADDRESSED (AS DEFINED IN THE DECLARATION OF PARTNERSHIP) TC LHIN STRATEGY INITIATIVE SECTOR IMPACTED Strategy #9: Capacity Planning to meet future palliative care needs including the needs of marginalized populations 16. Conduct analysis to support capacity planning to meet future needs including the needs of marginalized populations. All Sectors TC LHIN PALLIATIVE CARE STRATEGY 43

44 Governance As indicated in the planning model, one critical area for consideration is governance and accountability. In as much as the recommended strategies are critical to the evolution and effectiveness of the system, the system itself must be supported and governed in a manner consistent with these strategies. For the purposes of this report and strategy, governance will be considered from two perspectives: structure and measurement. Governance Structure Options As health systems continue to evolve in Ontario, a wide variety of structures have evolved to govern those systems in a more integrated manner. With this in mind, the Steering Committee reviewed governance structures for palliative care systems in the province, and identified potential models for review and consideration. Design Principles In order to properly assess the governance options, the Steering Committee identified a series of design principles against which each model was assessed. These principles suggested that in order to better enable and achieve the desired outcomes of the TC LHIN Palliative Care Strategy, we would adopt a governance structure (and its supporting processes and systems) that: Is accountable to and funded by the LHIN; Is aligned with provincial and local governance structures to strengthen equity across LHINs; Reflects leading practice in palliative care governance; Is representative of all palliative care sectors/services; sectors/services concerned with advanced chronic disease management; and appropriate community members; Promotes equitable access and opportunity by supporting a consistent approach to regional palliative care service planning; Promotes integrated regional palliative care service delivery plans and outcomes; Ensures minimum (integrated) standards for palliative care in all settings; Drives accountability for quality to the organizations/services delivering care; Fosters inter and intra- agency accountability at the regional level; Supports clear roles, responsibilities and accountabilities across the system Supports a positive care experience for clients and caregivers. Recommended Governance Model Based on this evaluation, the Steering Committee endorsed the Council/Program Model. In this model, the sponsor site for the program/council (e.g. CCAC, hospital site) has a formal agreement with the LHIN (usually in the form of Terms of Reference or a Memorandum of Understanding) and an informal accountability to the broader health care system. There is also a formal accountability through the Service Accountability Agreement (SAA) between the sponsor site and the LHIN. Not every Health Service Provider is represented at the council but has a say through a council representative. The program/council will make recommendations to the LHIN related to palliative care system design and resource allocation to inform funding, and planning and integration decisions. TC LHIN PALLIATIVE CARE STRATEGY 44

45 The Council/Program model is being adopted across several LHINs as an effective governance structure. An illustrative example of this model is provided below in Figure 6. Figure 6 - Governance Structure At its core, this model will serve as a key coordinator, planner and evaluator of system performance with its authority drawn specifically through the TC LHIN. Other assumptions associated with this structure may include: TC Palliative Care Council (TCPCC) would have direct reporting to the senior leadership of the LHIN through a Memorandum of Understanding. TCPCC Coordinator/Director would be responsible for supporting the work of the Council, Advisory Groups and Specialty Committees. Membership of the TCPCC would be cross-sectorial and would include palliative care providers and representatives of the various sectors where patients receive care. Structure would include supporting advisory groups and committees (variations might include Service Delivery, Knowledge Translation/Education Communication and Community Engagement, Performance and Quality) TC LHIN PALLIATIVE CARE STRATEGY 45

46 Accountability of HSP providers for palliative care will be to the LHIN via the Service Accountability Agreement. While the TC Palliative council will service as the advisory body to the LHIN for palliative care planning. Client and Caregiver Engagement As part of our ongoing dialogue with clients and caregivers in this process, we asked them for their advice regarding how they could best be engaged by the new governance structure moving forward. Focus group participants agreed that their involvement was important and critical to the success of both the strategy and the system moving forward. In thinking about what this involvement would look like, they felt that it would need to be organic in nature and on an as needed basis (i.e. when specific opportunities for engagement arise). Based on their advice, as well as the Steering Committee s consideration of the system s needs, two recommendations were made: 1. Whenever possible, clients and caregivers should be engaged on emergent and ad hoc issues. Clients and caregivers must be considered a vital stakeholder group in any initiative or strategy development; 2. To ensure that the views of clients and caregivers are representative of current system experiences, consultation and/or participation on working groups should be refreshed from time to time. In pursuing these recommendations, it is the feeling of the Steering Committee that the views of clients and caregivers will always be central to this work, ensuring relevancy and currency to an ever-evolving system. It is recommended that the establishment of this governance structure be pursued and considered as initiative #14 of this strategy. Additional feedback is also highlighted in Appendix D. Education A focus on training and education of health service providers has been identified (initiative #15). This specific need has been recognized by clients, caregivers and providers across all sectors and across the continuum of care. Specific gaps that have been identified include: a lack of awareness of available palliative services within and across sectors and a lack of general knowledge about the palliative care philosophy, service delivery and approaches to care. It is for this reason that a system-level education and training model for palliative care is being proposed. The supporting structure for this model would be a sub-committee of the governance structure. Responsibilities of this sub-committee would include: - Systematically identifying education and training gaps within and across the various sectors; - Developing an understanding of who currently provides palliative care education and training within the LHIN and more broadly; - Developing and implementing education, training and best practice strategies and programs within and across sectors; - Evaluating the impact of education and training provided. Based on the feedback received during the planning phase, it is recommended that long-term care and primary care are the first areas of focus of the education sub-committee. Additional areas of consideration for education and training in these two sectors include; TC LHIN PALLIATIVE CARE STRATEGY 46

47 Long-Term Care Primary Care Capacity building with primary care physicians and LTC staff leveraging existing training programs and tools (e.g. Palliative Alliance LTC tool kit, LEAP program for LTC, online training modules for PSWs, Hospice Palliative Care Ontario training programs) Education focused on primary care physicians and teams within Health Links Identifying champions of palliative care already in the community who become links to the primary care teams / environments Leverage LEAP training for primary care physicians Possibility of mentorship/training partnership with Temmy Latner Centre for Palliative Care In the future it is also recommended to expand these educational strategies to other sectors, including hospitals and the community. It is recognized that capacity building will also occur inherently through the implementation of the various initiatives. The educational focus during the implementation of these initiatives will be to build awareness of services available across sectors through increased collaboration and integrated care. It is recommended that 1 FTE coordinator be allocated to support the work of this education and training subcommittee. Measurement and Performance Accountability From the onset of this project, it has been clear that the TC LHIN s Palliative Care Strategy must impact and address a number of specific indicators. As discussed, these indicators are focused on: a) reducing acute care hospital days associated with palliative care admission (excluding designated palliative care units) and b) the improvement of the overall client and caregiver experience. In addition, all LHINs have committed to tracking a number of supporting measures to the big dot indicators. Table 6 below identifies the supporting indicators, baseline data for 2012/13 and associated targets. Table 7 - Core Metrics METRIC (Patients with ICDA-CA code Z51.5 palliative care) Total number of hospital days attributed to palliative care (acute and ALC days) TC LHIN Baseline FY 2011/12 Target 85,379 days 10% reduction = 8,538 days (to 76,841 days) % of patients discharged to continuing care (e.g. palliative care unit or other) % of patients discharged to setting with support services (attendant care, home care, etc.) 1,122/5,244 =21% 849/5,244 =16% N/A Increase TC LHIN PALLIATIVE CARE STRATEGY 47

48 METRIC (Patients with ICDA-CA code Z51.5 palliative care) % discharged home (no external support needed, not incl. LTC) TC LHIN Baseline FY 2011/12 554/5,244 =11% Target Decrease # of ALC days 2.3 days Decrease Average total Length of Stay (acute and ALC LOS) 16.3 days Decrease # of patients that died in acute care hospital 2,454/5,244 =47% Decrease There is in an inherent challenge in determining the direct contribution of any one initiative to these particular measures. As with most health system and quality of life measures, success is often multivariate in nature and it is difficult to discern the contributions of one factor over another. With that said, however, the Steering Committee has carefully assessed each strategy in the context of system level impact (as defined by the Declaration of Partnership), local impact (as defined by the TC LHIN Gap analysis) and the view and perspective of our clients and caregivers (as articulated by our Focus Groups). Although we expect that progress will be made on these big dot indicators, we also recognize that this progress will be slow but deliberate. As with most measures of interest in healthcare, we expect that we might see certain metrics worsen once we start to monitor them more effectively. This is to be expected. We are confident that this temporary worsening of measures will lead the way to greater improvements in quality and client and caregiver experience. Based on the evaluation analysis, the Steering Committee is confident that the individual and collective impact of the efforts of these strategies will impact on the system s key performance indicators and improve the care experience for our clients and caregivers. As part of the ongoing oversight of the palliative care system, the Steering Committee further recommends that the TC LHIN Palliative Care Council take responsibility for recommending a core set of measures against which the system may be continuously measured and strategy progress assessed. Although a formalized scorecard for the system has not yet been developed, the work streams have provided a series of metrics for consideration for the initiatives moving forward. There is a need also to align this work with the provincial palliative balanced scorecard and measurement framework which is in the process of being developed. These are listed in Appendix C and it is recommended that these measures be considered as part of a larger performance and measurement discussion. TC LHIN PALLIATIVE CARE STRATEGY 48

49 APRIL MAY JUNE JULY AUGUST SEPTEMBERR OCTOBER NOVEMBER DECEMBER JANUARY FEBRUARY MARCH APRIL MAY JUNE JULY AUGUST SEPTEMBERR OCTOBER NOVEMBER DECEMBER JANUARY FEBRUARY MARCH Implementation Timelines As indicated in the table above, the TC Palliative Care strategy s focus has been on the next 2 years. With that context, the following GANTT chart provides a draft, visual summary of the activity to be undertaken during this time period. Table 8 - Implementation Plan (Sorted By Initiative #) YEAR 1 (2014/15) YEAR 2 (2015/16) ESTIMATED TC LHIN STRATEGY # INITIATIVE LENGTH OF INTIATIVE (MONTHS) Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4 Early Identification Initiative #1: Integrate the 'surprise question' 19 Initiative #2: NP/Primary Care/Community Partnering 19 Initiative #3: Develop a plan to ensure early identification and advance care planning across all care settings. 12 Increase Access Initiative #4: Palliative Care information and referral 13 Initiative #5: Build capacity within Visiting Hospice. 12 Initiative #6: Implement RM&R 12 Caregiver Support Initiative #7: Population Needs and Gap Analysis 12 Integrated Teams Initiative #8: Palliative care teams enhancement 23 Strengthen LTC Initiative #9: Build capacity with LTC Homes staff 23 Initiative #10: Improve communications with LTC 19 Initiative #11: Conduct an analysis of the gaps, challenges and unique needs for palliative care in LTC. 9 ER Avoidance Initiative #12: Build capacity of ER staff 13 Initiative #13: Leverage and expand EMS partnership 12 Governance Initiative #14: Implement New Governance Structure 6 Public Awareness Initiative #15: Initiate Awareness and Education Strategy 21 Capacity Planning Initiative #16: Conduct analysis to support capacity planning to meet future needs including the needs of marginalized populations Planning - Implementation TC LHIN PALLIATIVE CARE STRATEGY 49

50 APRIL MAY JUNE JULY AUGUST SEPTEMBERR OCTOBER NOVEMBER DECEMBER JANUARY FEBRUARY MARCH APRIL MAY JUNE JULY AUGUST SEPTEMBERR OCTOBER NOVEMBER DECEMBER JANUARY FEBRUARY MARCH The following table (below) also presents the implementation plan, this time presented in the order of implementation. Table 9 Implementation Plan (Sorted by Order of Implementation) ESTIMATED INITIATIVE LENGTH OF INTIATIVE (MONTHS) Initiative #14: Implement New Governance Structure 6 Initiative #6: Implement RM&R 12 Initiative #7: Population Needs and Gap Analysis 12 Initiative #8: Palliative care teams enhancement 23 Initiative #9: Build capacity with LTC Homes staff 23 Initiative #13: Leverage and expand EMS partnership 12 Initiative #15: Initiate Awareness and Education Strategy 21 Initiative #5: Build capacity within Visiting Hospice. 12 Initiative #11: Conduct an analysis of the gaps, challenges and unique needs for palliative care in LTC. 9 Initiative #10: Improve communications with LTC 19 Initiative #1: Integrate the 'surprise question' 19 Initiative #2: NP/Primary Care/Community Partnering 19 Initiative #4: Palliative Care information and referral 13 Initiative #12: Build capacity of ER staff 13 Initiative #16: Conduct analysis to support capacity planning to meet future needs including the needs of marginalized populations. Initiative #3: Develop a plan to ensure early identification and advance care planning across all care settings Planning - Implementation TC LHIN PALLIATIVE CARE STRATEGY 50

51 Summary and Statement Impact Collectively, there are 13 recommendations that are being presented Palliative Care is an important as part of this strategy. Through the efforts and inspired thinking of piece of the healthcare puzzle. our work streams and Steering Committee, these recommendations - Caregiver form the basis of a transformational strategy with an initial focus of 2 years. As noted earlier, however, these strategies are just the beginning and provide the foundation of a larger, multi-year strategy focused on shifting structures, process and behaviors within the TC LHIN and the Palliative Care system. It is acknowledged that these recommendations focus on the system in general and do not address the needs of all populations or sub-populations explicitly. Over the next year, there will also need to be a targeted focus on understanding the needs of specific populations in the TC LHIN, namely the Aboriginal population, marginalized/under-housed populations and individuals living with a disability. Several groups in the LHIN and across the province have begun to address the needs of these populations and there is an opportunity to leverage these efforts to develop targeted strategies for these populations in the TC LHIN. Similarly, as the TC LHIN moves forward to implement this strategy it must be acknowledged that ongoing analysis and investigation into our current and future capacity must occur. There is a need to continue to assess needs and capacity to determine the longer term Palliative Care strategy for the TC LHIN as it continues to evolve with the implementation of the various initiatives. The immediacy and urgency of this 2 year strategy is evident, but it is well-acknowledged that our efforts and analysis must extend beyond that immediate window as we work to implement these initiatives. Will these strategies make a difference? We believe they will. Working with our Work Streams and Steering Committee, we have been able to draw specific lines of impact across two core dimensions: the continuum of care as outlined in the model of care framework and the system gaps identified in the Declaration of Partnership. TC LHIN PALLIATIVE CARE STRATEGY 51