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The Good Rural (French-Canadian and English-Canadian) and Good Remote (Northern Canada) Death

The Good Rural (French-Canadian and English-Canadian) and Good Remote (Northern Canada) Death. Reporting on an initial two-province rural study and a follow-up remote area study.

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The Good Rural (French-Canadian and English-Canadian) and Good Remote (Northern Canada) Death

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  1. The Good Rural (French-Canadian and English-Canadian) and Good Remote (Northern Canada) Death Reporting on an initial two-province rural study and a follow-up remote area study Donna Wilson and LiseFillion, with Roger Thomas, Christopher Justice, ParamBhardwaj, Anne-Marie Veillette, Serge Dumont, Elizabeth Tanti, and others

  2. Introduction Hospice/palliative care is broadly understood as efforts aimed at promoting the “good” death. Much interest is now evident in defining good deaths and in making these happen. Little is known, however, about the perspectives of people living in rural and remote areas with regard to what they think is a good death.

  3. Method An ethnographic (cultural) study was conducted to gain an understanding of the good death from a rural perspective, in Alberta (English-speaking) and in Quebec (French-speaking). We did site visits to observe communities and to interview individuals, and held focus groups involving people who defined themselves as “non-urban” - as self identity is critical.

  4. What is a good death for someone living in a rural community? Results

  5. Four Main Findings in Alberta 1. The belief that they have unique (rural) perspectives and concerns. 2. Caring deeply about “their” community. 3. A loose network or patchwork of P/EOL care providers and services had developed. 4. Unique challenges existed for developing and maintaining P/EOL services, and thus for enabling or providing for good rural deaths.

  6. 1. Rural Uniqueness - based on having lived for many years in a distinct rural community, and reinforced by the differences that naturally occur with living in a rural/remote community. - one of the most important differences is that EOL care and dying should take place within the rural community, to prevent inappropriate care in large city hospitals and to ensure contact with families and friends.

  7. 2. Caring Deeply - rural people care deeply about “their” community and its members, and are highly motivated to ensure quality P/EOL care services exist locally. - this situation occurs in part to ensure that dying community members have dignified deaths (i.e. care that is highly individualized or personalized).

  8. 3. Network of Services - a loose patchwork of rural care providers (paid/volunteer, professional/other) developed. - they did not look to cities to provide P/EOL care for their residents, although they realized some care necessarily occurred there. - all acted upon a strong community-focused orientation to ensure a wide range of care needs for persons in their community are addressed.

  9. 4. Unique Challenges - rural regions had unique challenges for developing and maintaining P/EOL services, and thus for enabling good rural deaths. - these challenges included: needing a local hospital, all care providers needed to provide EOL care, ongoing trust in sole healthcare providers essential during dying process, difficulty in replacing sole providers who leave..

  10. Quebec Findings • The Alberta study was undertaken in the fall and winter, with the Quebec study the following spring and summer. • The findings of the Alberta study were substantiated, indicating a “rural culture” exists and not a French-Canadian or English-Canadian understanding of the good death. • A good quality of life was further identified as essential for a good death experience.

  11. Good Quality of Life Until Death • A good quality of life, composed of four dimensions, is essential for a good death experience (as outlined by Stewart et al., 1999): • Physical dimension • Emotional and psychological dimension • Social dimension, • Spiritual dimension. Stewart, A. L. et al. (1999). The concept of quality of life of dying persons in the context of health care. Journal of Pain and Symptom Management,17(2), 93-108.

  12. Conceptual Analysis of a Good Death

  13. Conceptual Model of a Good Death

  14. RemoteNorthernCommunity Following this two-province study, a site visit with observations and interviews of residents in a remote Northern Canadian (fly in only) community was undertaken to replicate the study. This study became oriented to gathering a First Nations or Aboriginal understanding of the good “remote” death and/or a good remote death experience(s).

  15. The Remote Good Death Similar findings as to previous good rural death study, with some additional emphasis on select themes and/or categorical themes: • it is important to die in the home community, • there is an optimal way to enable a good death in a remote community, and • travel is a major factor affecting the good remote death.

  16. Conclusions Rural and remote people are unique with regard to the “good” death. Rural residents are highly motivated to address the P/EOL needs of their community members (and families) within their own regional boundaries. Rural policy, services, and practice need to be based on an understanding of the primacy of “rurality” and “remote living” for quality P/EOL care.

  17. Publications • Fillion, L., Viellette, A. M., Wilson, D. M., Dumonte, S., & Thomas, R. (2010). The “good” rural death in Quebec, A report of an ethnographic study. Journal of Palliative Care. • Wilson, D. M., Fillion, L., Thomas, R., Justice, C., Vignette, A. M., & Bhardwaj, P. (2009). Planning and providing for a good death using rural French-Canadian and English-Canadian insights. Reviews in the Neurosciences (Special Issue), 20(3-4), 313-319. • Fillion, L., Viellette, A. M., Wilson, D. M., Dumonte, S., & Lavoie, S. (2009). Les racines de la « belle mort » : une étude ethnographique en milieu rural au Québec. (French) The “good” rural death: A report of an ethnographic study in rural Quebec. Cahiers Francophones de Soins Palliatives, 9(2), 61-75. • Wilson, D. M., Truman, C., Thomas, R., Fainsinger, R., Kovacs-Burns, K., & Justice, C. (2009, May). The rapidly changing location of death in Canada, 1994-2004. Social Science & Medicine, 68(10), 1752-1758. (doi: 10.1016/j.socscimed.2009.03.006) • Wilson, D. M., Fillion, L., Thomas, R., Justice, C., Bhardwaj, P., & Veillette, A. (2009). The “good” rural death: A report of an ethnographic study in Alberta, Canada. Journal of Palliative Care, 25(1), 21-29.

  18. Acknowledgements The initial and second study were funded by a Canadian Institute for Health Research (CIHR) Interdisciplinary Capacity Enhancement (ICE) grant, # HOA-80057, entitled “Timely Access and Seamless Transitions in Rural Palliative/End-of-life Care” and funded through the CIHR’s Institutes of Cancer and of Health Services and Policy. This five-year program of research was awarded to A. Williams and D. Wilson (Co-Principal Investigators. Contacts: Dr. Donna Wilson donna.wilson@ualberta.ca Dr. Lise Fillion lize.fillion@fsi.ulaval.ca

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