A Report Written for the Nunavik Regional Board of Health Shawn Renee Hordyk, Phd Mary Ellen Macdonald, Phd Paul Brassard, MD March 2016
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A report written for the Nunavik Regional Board of Health Shawn Renee Hordyk, PhD Mary Ellen Macdonald, PhD Paul Brassard, MD March 2016 EOL CARE FOR INUIT IN NUNAVIK QUEBEC- Submitted March 2016 AUTHORS Hordyk, Shawn-Renee, PhD, Postdoctoral research fellow Brassard, Paul, MD, Primary investigator Macdonald, Mary Ellen, PhD, Co-investigator ACKNOWLEDGEMENTS/ COLLABORATIONS We would like to express our sincere “thank you” to the many participants who have offered their experiences and expertise concerning End of Life Care for Inuit in Nunavik. We hope that we have accurately represented their professional experiences as well as personal stories and insights. Any errors in the content or conclusions of this report are the sole responsibility of the authors. A special thank you to the four communities represented in this study and the many community members who gave us their time and who invited us to taste the richness of community life in Nunavik. Our thanks are also extended to the following reviewers who provided feedback on select areas of initial drafts of this report. Your input was much appreciated. Martha Greig Marie-Hélène Marchand Fabien Pernet Ida Saunders Patrick Willemot This research was funded by the Fonds de recherche du Québec Santé (2013-2015) and conducted in collaboration with the Nunavik Regional Board of Health and with Serge Dumont, PhD of the Université Laval au Québec. 2 EXECUTIVE SUMMARY: End of life (EOL) care planning and policy for cancer patients, the chronically ill as well as the elderly is becoming increasingly relevant for Inuit communities: community members are living longer and experiencing an increase in rates of certain cancers and chronic disease (CPAC, 2014; Wallace, 2014). Researchers have underlined the need to develop and validate conceptual plans and policies for palliative care for Indigenous peoples in a “bottom-up” inclusive approach with the community (Kelley, Williams, DeMiglio & Mettam, 2011). Studies have called for an incorporation of the view of Indigenous elders in the planning and provision of EOL care (Kalbfleisch, 2007) as the lack of Indigenous voices in EOL care remains a major issue (Loppie & Wien, 2005). Such findings indicate a need for clear policies and guidelines to facilitate home care and community EOL programs. Through questions and observations we sought to identify the existing strengths and resources within Inuit communities as they provided EOL care to community members. Focused ethnography allowed us to combine semi-structured interviews, informal dialogues and participant observations in diverse communities to gather information. Recognizing the expertise in the participants with whom we had spoken, we then solicited individuals engaged in EOL care provision to review the interpretation of our findings. We had conversations concerning EOL care for Nunavimmiut in the context of four Nunavik communities, the Quebec Module du Nord and the McGill University Health Center. In 2014- 2015, 103 participants contributed to the study through recorded interviews and informal dialogues specifically related to EOL care provision. Resultant themes included the following: a) trajectories of patient care; b) the contexts of care, specifically, the challenges and variables to care and recommendations to improve care; c) communication; d) the role of interpreters in EOL care; d) considerations concerning Law 2; and e) bereavement and grief in EOL care. Variables in CLSC care Variables in family/community Variables in hospital care care Relationship/communication Psychosocial support: Clarity of communication with patient/family functioning/ with patients and health communication/coping skills professionals Access to palliative care Family level of Involvement of liaison resources knowledge/preparedness nurses, interpreters, escorts, family Duration of care Duration and intensity of care Degree of cultural awareness Psychosocial support Suitability of home Complexity of treatment environment options Capacity/preparedness of Involvement of extended Continuity of patient care family/community family and community Amount of moral distress Degree of trust in Psychosocial state of nurse/physician/interpreter patients and caregivers Investment of time and training Existing responsibilities and Displacement and in Inuit health care providers obligations homesickness of patient 3 As indicated in the above table, the capacity to provide EOL care depends on a number of intersecting variables in home, CLSC and hospital contexts. To address these variables in the development of EOL care, Nunavimmiut and Qallunaat participants drew on professional experiences to make recommendations that they believed would lead to a sustainable model for EOL care for Nunavik patients. Several of these recommendations are linked to changes that are already underway in communities and institutions; while others had not yet been implemented. Most participants agreed that a combination of Inuit and Qallunaat areas of practice and expertise is needed for developing EOL care in Nunavik. The Inuit communities appear to be at a disadvantage, however, as their cultural and traditional expertise has largely gone unexamined and thus has not been accorded the stamp of “evidence-based practice,” which is so necessary to attain funding for program development and personnel. We conclude our report with several key areas summarizing how to proceed in providing EOL care in Nunavik. These are summarized in the table below: Palliative care resources and training for nurses and physicians Support for existing bereavement care initiatives in communities 1-12 Training and recognition of interpreters months Education in Law 2 and the Supreme Court decision Home services and inpatient facilities for elders Education in disease progression and EOL care 12-24 Psychosocial support services for patients and families through the months identification of existing cultural and spiritual practices Nursing staff support in Nunavik and Montreal Family education and respite services The North and South gap: re-examining the public health approach 2-10 to EOL care years A sustainable approach to EOL care 4 Table of Contents 1. PROJECT OBJECTIVES AND RATIONALE ................................................................................................. 8 2. METHODOLOGY .............................................................................................................................................. 8 3. PORTRAIT OF PARTICIPANTS .................................................................................................................... 9 3.1 ORIGINS ............................................................................................................................................................................... 9 3.2 ROLE IN PROVISION OF EOL CARE .................................................................................................................................. 9 4. CONTEXTUAL FACTORS: NUNVIK INUIT ............................................................................................... 11 4.1 DEMOGRAPHIC CONTEXTUAL FACTORS ...................................................................................................................... 11 4.2 GEOGRAPHIC AND HISTORIC CONTEXTUAL FACTORS .............................................................................................. 13 4.2.1 Voluntary migration .............................................................................................................................................. 13 4.2.2 Settlement and displacement ............................................................................................................................ 13 4.3 SOCIAL AND SPIRITUAL CONTEXTUAL FACTORS ........................................................................................................ 15 4.3.1 Spirituality and worldviews ............................................................................................................................... 15 4.3.2 Caring traditions ..................................................................................................................................................... 16 4.3.3 Social change and upheaval ............................................................................................................................... 17 5. TRAJECTORIES OF CARE ............................................................................................................................ 18 5.1 POTENTIAL CARE TRAJECTORIES ................................................................................................................................. 18 5.2 CASE SCENARIO ............................................................................................................................................................... 19 5.3 COMPLICATIONS RELATED TO NORTH/SOUTH CARE ............................................................................................... 21 6. FAMILY AND COMMUNITY ORGANIZED CARE .................................................................................... 22 6. 1 FAMILY AND COMMUNITY SERVICES .......................................................................................................................... 23 6.1.1 Family .......................................................................................................................................................................... 23 6.1.2 Home environments