Environmental Scan for Strengthening Residential Hospice Care in Ontario Evidence and Practice Report of the Residential Hospice Working Group March 2015 Table of Contents PART I: POLICY ENVIRONMENT ........................................................................... 1 CONTEXT ......................................................................................................................... 1 DEFINITION ...................................................................................................................... 2 IMPORTANCE OF RESIDENTIAL HOSPICES .................................................................................. 2 ALIGNMENT WITH GOVERNMENT DIRECTION, STRATEGIES AND INITIATIVES ..................................... 4 SHARED VISION, GOALS AND VALUES ..................................................................................... 5 PART II: POPULATION NEED AND PREFERENCES .................................................. 7 2.1 KEY FACTS ............................................................................................................... 7 2.2 PATIENT AND FAMILY PERSPECTIVES AND EXPERIENCES .................................................... 10 PART III: CURRENT PALLIATIVE DELIVERY LANDSCAPE ...................................... 16 3.1 RESIDENTIAL HOSPICES IN ONTARIO ............................................................................ 16 3.2 OTHER CARE SETTINGS ............................................................................................. 21 PART IV: DETAILED RESOURCE AND REFERENCE MATERIAL .............................. 26 4.1 AN OVERVIEW OF RESIDENTIAL HOSPICES (HPCO) ........................................................... 26 4.2 RESIDENTIAL HOSPICE UTILIZATION DATA ........................................................................ 40 4.3 LITERATURE REVIEW: ECONOMICS OF END OF LIFE CARE ..................................................... 43 4.4 RESIDENTIAL HOSPICE CAPACITY: JURISDICTIONAL SCAN ...................................................... 49 4.5 MODELS OF CARE: RESIDENTIAL HOSPICES ...................................................................... 63 4.6 MODELS/APPROACHES OF CARE: COMMUNITY-BASED END-OF-LIFE CARE .............................. 66 4.8 COMMUNICATION AT END OF LIFE .................................................................................. 77 4.9 COMPENDIUM OF RESEARCH ......................................................................................... 80 4.10 COMMUNITY RESIDENTIAL HOSPICE STANDARDS 2012 (HPCO) ......................................... 85 4.11 HPC STANDARDS: OTHER JURISDICTIONS ...................................................................... 97 4.12 TEMPLATE ACCOUNTABILITY AGREEMENT BETWEEN CCACS AND RESIDENTIAL HOSPICES ........ 100 4.13 PROVINCIAL PALLIATIVE CARE POLICY AND REGULATION BARRIERS (HPCO, MARCH 2013) ... 119 4.14 RESIDENTIAL HOSPICES WORKING GROUP: THEMES FROM FOCUS GROUPS ......................... 125 BIBLIOGRAPHY ................................................................................................ 128 REFERENCES .................................................................................................... 135 Introduction Purpose of Report The Ministry of Health and Long-Term Care (ministry), Local Health Integration Networks (LHINs), Hospice Palliative Care Ontario, Community Care Access Centres (CCACs), and other sector partners are working collaboratively to strengthen Ontario’s continuum of end-of-life care and optimize residential hospices. In November 2013, a Residential Hospice Working Group was formed to provide analysis and advice to the ministry, the LHINs and the Coalition through the Provincial Palliative Steering Committee to inform the ministry’s development of community-based residential hospice policy; LHIN integration and service options in the future; and sector implementation of best practice delivery for hospices aligned with Ontario’s Declaration of Partnership and Commitment to Action. This report summarizes the evidence-base that was considered by the Residential Hospice Working Group to inform its recommendations. It includes a synthesis of the evidence, practice and data gathered through an in-depth review of government and non-government publications and academic and scholarly reports that were considered relevant to the mandate of the Working Group. It delivers on the mandate of the Working Group to provide a detailed analysis of the current state of community-based residential hospices and a synthesis of evidence-based best practices to ensure that community-based residential hospices are integrated and coordinated within a continuum of palliative care services that complements without duplicating the role of home and community care, long-term care homes, and hospitals. This report was prepared as part of the Working Group commitment to building a strong and transparent evidence base to support its work. Part I: Policy Environment Context In December 2011, the Ministry endorsed the Declaration of Partnership and Commitment to Action (the Declaration) 1 as a multi-year roadmap to improve palliative care in Ontario. Through the Declaration, Ontario is developing a needs-based system that serves all citizens with life limiting illness and their families and is working with key partners to support evidence-based palliative care in clinical settings, with strong community empowerment, innovation and customization at the local level. Through the Declaration, partners committed to develop best practices to optimize residential hospices to support those who cannot be cared for at home but do not require hospital care by: • Ensuring Ontario residents have equitable access to residential hospices, where care in this setting is the most appropriate and cost-effective, based on individual and family preferences and level of need. 1 • Establishing an appropriate level of consistency across regions. • Reviewing client segments (e.g., profile and needs) and care delivery models within existing freestanding residential hospices to understand any variations in delivery, cost and outcomes. • Exploring establishing formal accountability relationships with LHINs. • Considering innovative approaches to reduce capital costs. Examples include using existing spaces, expanded volunteer practice, etc. Bridging the gaps between policy, practice and support requires acknowledging the challenges of medical and public health models, improving proactive integration of community-based care delivery across all sectors, enhancing the role of primary care providers, and extending research to provide an evidence-base for interventions. Definition A residential hospice is a home-like environment where adults and children with life-threatening illnesses receive end-of-life care services.2 Hospice Palliative Care of Ontario defines community residential hospices as a healthcare facility and registered charity that provides palliative care services by an interprofessional team with palliative care expertise 24 hours a day, 7 days a week in a home like setting for the individual and their significant others at no cost to the user.3 Facilities incorporated in a Community Residential Hospice consist of at a minimum: • Private residential rooms; • Community living room, kitchen and eating area: • Quiet area; • Tub/Shower room; • Public washrooms meeting accessibility regulations; • Dirty utility area; • Supplies area/station including secure medication room; • Administrative offices • Children’s play area. Importance of Residential Hospices In moving forward with implementation of their three year regional palliative plans, the LHINs have recognized residential hospices as important providers of a continuum of palliative care and have agreed to work with the ministry to develop a residential hospice policy framework and integration options through the establishment of a Residential Hospice Working Group. The HPCO has previously put forward the following business case for residential hospice services: 2 An essential part of the care continuum, residential hospices are often an appropriate care setting for those who cannot be cared for in their own home, yet do not require or want to be cared for in a hospital setting. Residential hospices work in collaboration with physicians, hospitals, CCACs, and other care providers to offer a range of supportive services that are focused on the patients and their families. Residential hospices are often used by individuals in the very last stages of their life who need more intensive care. Care in a residential hospice can provide relief for informal caregivers when a loved one is in the last stages of her or his life. In addition, evidence suggests that patients and caregivers are very satisfied with the care received in a residential hospice. Residential hospices provide specialized and targeted care collaborated by physicians, hospitals, CCACs and other care providers, outside of a hospital setting. Unlike in most hospital settings, every member of a residential hospice has expertise and training in “palliative care, pain and symptom management and the specific needs of the dying. Care is provided with a focus on the patient and their family, allowing for individual choice in determining how to address unique needs and desires for support. This approach ensures that hospices can serve diverse communities, respecting the different practical, religious, spiritual and cultural traditions associated with end-of-life