May ICE Team Meeting: Hamilton, ONT Project 1: Policy & Service Analysis Team: Richards, Whitfield, Williams, Kelley Trainees: Gillis Associate: Summers

Rationale a comprehensive historical review (1970 to present) of policies and key events impacting the design and delivery of P/EOL care programs/services in rural Canada systematically captures at national/provincial/local levels, the public policy/services that are within the domain of rural P/EOL care in the jurisdictions of: PEI, Quebec, Ontario, Manitoba, Saskatchewan, & Alberta provides the foundation for a range of research projects making up the ICE Program

Methodological Approach modeled after Springate-Baginski and Soussan’s (2001) methodology for policy process analysis  includes a documentary analysis which informs a policy/program trajectory, which is then confirmed and elaborated on via key-informant interviews in each provincial jurisdiction National overview captured via 3 key-informant interviews

Summarized Policy Analysis Stages (adapted from Springate-Baginski & Soussan, 2001) 1.Define Key Policy Milestones 2.Explore Wider Policy & Governance Context 3.Examine Key Policy Issues 4.Understand the Policy Development Process and its Outcomes 5.Analyze the Implementation Process 6.Consider the Future – The Longer-term View

Analytical Approach Modification of the traditional constant- comparison approach Three data types used: –documents for documentary review, –policy/program time-line or trajectory produced from documentary review, and –key-informant interview data (analysed using thematic analysis) Interview data, compiled as a set for each jurisdiction, provided a reinterpretation of the timeline and documentary review Data integrated via cross-referencing by theme

The National Scene Thematic Results: 1.Current State of P/EOL Care in CND 1.Characterized as underdeveloped & fragmented 2.Reasons for above 2.Policy Issues – Pallium project identified 3.Role/Influence of Politicians 4.Turning Points 5.Unfinished Business 6.Future Issues/Concerns 

6. Future Issues/Concerns or what we (ICE) may be able to influence Meaning of rural specific to P/EOL services needs definition Partnerships needed between: –Different levels of gov’t (prov., fed., other) –Gov’ts and employors –All service practitioners involved in order to achieve an integrated approach Change in care models, system organization & care practices –continuity across settings –model requiring training across settings/systems and professions/services –Recognition of a wide range of diseases (chronic and other) Enhanced local community development in order to best co-ordinate concerns and engage all parties involved (family caregivers, volunteers, churches, community resources, etc.) Recognize a population health approach in P/EOL (patient, family, community, geographies) Advocate for above + funding via a national coalition

Prince Edward Island Important turning points 1.Hospice Palliative Care Association of Prince Edward Island (PEI) –In response to grassroots pressure, the first palliative care program was created within the same year –In conjunction with concerned citizens, pushed for further development of a distinct P/EOL care program –Creation of the first 8 beds for palliative care on PEI at the Dr. Eric M. Found Health Center –Continue to improve palliative care across PEI: concerned citizens met with government officials to discuss government responsibilities concerning P/EOL care

Prince Edward Island Important turning points 2.Eleanor Davies: President of Island Hospice Association –Re-evaluated the state of P/EOL care and composed a proposition paper in 1995 –Puts forward recommendations and suggests an integrated palliative/hospice care service –From her attempts to improve the existing programs, major progress was made within five years

Prince Edward Island Important turning points 3.PEI and Nova Scotia (NS) propose a Rural Palliative Home Care Model –The trial program in West Prince county (PEI) became a model program for the rest of Canada –After the success of this program, P/EOL care programs were created in every county of PEI

Prince Edward Island Current successes and challenges Successes: –Approximately 1000 health care workers have been trained through the Support Worker Training Program at Holland College (mandatory for some) Challenges: –No Island-wide policy on P/EOL care –Lost the Government Coordinator position

Québec Important turning points 1.The establishment of palliative care houses (PCH) in many regions across Québec –Allowed P/EOL services to be taken out of institutions –Allowed P/EOL services to be more accessible in rural and remote areas

Québec Important turning points 2.Foundation of the palliative care units at the Notre-Dame Hospital and Maison Michel-Sarrazin –Notre-Dame Hospital acts as a resource for the Montréal region by providing training and internship opportunities for personnel working in P/EOL care –The Maison Michel-Sarrazin fulfills the same functions for the Québec city region (only government-funded PCH)

Québec Important turning points 3.The desire of P/EOL care workers to see policy changes –Creation of the Palliative Network by many P/EOL care centers to act as a resource for mutual assistance –Pushed for change and the creation of policies by influencing the Minister of Health, the Honourable Pauline Marois

Québec Current successes and challenges Successes: –PCHs allow people in rural areas to remain at home while receiving P/EOL care Challenges: –Government funding to sustain PCHs

Ontario Political Context government is largely hands-off, following lead of other provinces, committing funds only late into the process ‘Managed competition’ introduced in 1996 has a somewhat negative affect on rural-based practitioners funding and policies for Health services in Ontario tend to be the same, whether it be Toronto or remote

Ontario Key Milestones Regional Health offices control their own palliative care policies (thus different across province). Reporting to province begins in Cancer Care Ontario adds Palliative Care to its mandate in 2004 Physicians to be paid for in-home palliative care services (goes provincial in 2007, 8 years after Toronto pilot)

Ontario Factors Contributing to Overall Success Federal monies, polices and reports several non-government organizations in Ontario that ‘do’ Palliative Care dedicated individuals across the province

Alberta “…palliative care has sort of rolled out in Alberta as an urban to rural phenomenon- where the urban programs have developed and gotten themselves in a position to sort of- get the job done- and then the rural programs have largely sort of developed or been modeled after that” (AB04, p.1)

Alberta Political Context History of strong individual initiative and leadership; Decrease of Regional Health Authorities in 2003; Implementation of Pallium Project in Alberta.

Alberta Key Policy Issues Lack of rural focus; Lack of Home Care services: –service access –specialized knowledge –predictability and continuity Burdened acute care system; –‘small hospitals end up providing a lot of end of life care services because there is no hospice-level care in most rural communities’ (AB04, p.10) Only “adequate” long term care system.

Alberta Factors Contributing to Overall Success Available funds at pertinent times e.g. “having the right people in the right places at the right time” (AB02, p.11); Access to well-developed expertise and leadership by physicians and nurses; Use of an integrated model of palliative care; Some government commitment.

Alberta Key Milestones Commitment by government and the voluntary sector to advance palliative care policies and programs; A history of success in palliative care (success begets success); Recent use of tele-health for consultation and care in rural areas; Ability to provide palliative care services in a variety of environments.

Saskatchewan “There is still such a desire in rural areas to die close to home or in ones community…we avail that for anybody who lives in an urban setting…but we are not that respectful of folks in rural areas…we ship them out and force them to leave their home community. That is not a good thing” (S04, p.5)

Saskatchewan Political Context Variations in funding for services people from reserves (Federal vs Provincial); Lack of flexibility in rural palliative care service delivery and related policies: –E.g. bed protection: “we are not willing to turn that one bed over to a palliative bed for a short period of time so that person who actually lives in that community could actually die there” (S04, p.5) –“…that’s where the person wished to die but we wouldn’t allow the person to die there because it was in another jurisdiction…regional boundaries!”(S04,p.10)

Saskatchewan Key Policy Issues Lack of palliative care/end of life related awareness and education by: –Government –Public Lack of palliative and end of life care expertise in rural communities; “Rural” (is not) and needs to continually be addressed, to always ask: –“how do rural people have access to that service?” (S04, p.9) New models for rural palliative care and creation of new standards to determine needs of PC/E of L workers.

Saskatchewan Key Milestones When province shifted to Health Regions; The creation of the “Guidelines for Development of Integrated Palliative Care Services” in 1994;

Saskatchewan Key Obstacles to Policy Success Geographic distances and low density population; Getting clinical resources (expertise) to rural areas; Using a unique rural model –“you can’t take the city and just plunk it into the rural” (S04, p.4) Urban experts not viewing palliative care from a community developement view: –“it was, ‘we are the experts and we can tell you what to do to fix all this’” (S04, p.4) ‘Silo-ing’ of health care professions yet palliative care requires a team approach

Saskatchewan Factors Contributing to Overall Success Palliative care education provided in rural and remote areas as a result of Pallium project; That palliative and end of life care is an integrated model: –“working together to assist the family and the client to get the services they need where they need it and where they wish to have it” (S06, p.8); –“we are one of the truly integrated services in Canada” (S06, p.1) 2004-Health Research Strategy-more focus on rural with attached resources to develop rural expertise; Community Advisory Boards - “sometimes if they are really squeaky, they can get things done that we didn’t initially plan for”(S04, p.9). The “Rurban Initiative”

Manitoba “palliative care [here] is uneven…[there is] still tremendous variation across the regions…there is a lot of inconsistency…and we are behind other provinces” (M05,p.3)

Manitoba (very preliminary insights-in progress) Milestones/Turning Points Winnipeg-1974 the 1 st hospital in Canada to create a palliative care program; –“that has had…a big impact. There are a lot of people who have died over the years in that palliative care unit. That has absolutely been positive” (M05, p.4) 1974-Province wide home care prgm. –“providing care in rural communities as well as in the cities”(S01, p.3) Palliative Drug Access Program (2002) allowed people to die at home-it offset costs incurred outside hospital e.g. drugs: –“we really had in a sense a perverse incentive to hospitalize people because the drugs were covered in the hospital” (M05, p.2) 2002-Provincial funding for Palliative Care Networks: Palliative Care Crdn. in each health region: “ it’s put palliative care on the map in the regions…it’s a good …grassroots…frontline force” (M05, p.2) Key initiatives driven by individual leadership; The impact of certain initiatives still unknown.

… to be continued … Once all jurisdictions complete, will determine commonalities/variations and determine the assets and challenges in each Reports will be written and distributed to ICE members, as they correspond with field sites – end of summer 07 Dissemination includes conferences (CHPCA) and peer-reviewed papers