1. An Ethnographic Study to Define the “Good” Rural Death in Alberta - Executive Summary Dr. Donna Wilson, Dr. Roger Thomas Dr. Christopher Justice Dr. Lise Fillion

2. Research Purpose Concern about the “good” death is readily evident in existing hospice-palliative care definitions. All emphasize the care that is needed for the aim of fostering a good death. Much progress has been made public about the programs or services that have developed to promote good urban deaths, but little is known about the “good death” perspectives and associated needs of people who live in rural or remote areas.

3. Rural or Remote Living 30% of Canadians live in rural or remote areas, over 95% of Canada’s land surface. Rural and remote definitions vary considerably, with most emphasizing distance from a city or urban setting. Focusing on residents who define themselves as “non-urban” was used, as this self identity is critical to the composition and functioning of rural or remote communities.

4. Research Methodology An ethnographic study was conducted to establish a conceptual understanding of the good death from a rural/remote perspective. In addition to site observations and reviews of community documents, individual interviews and focus group discussions were undertaken to gain information and build an understanding of the “good rural” death.

5. Research Methods Interviews involving volunteers (n=12) and focus group discussions (n=2) revealed much about unique rural cultural perspectives and realities. Data saturation, a time when no new information or understandings are gained, was reached, with this Alberta-based study concluded (a matching Quebec-based study is nearing completion).

6. Four Research Themes 1. Rural people believe they have some unique perspectives and concerns about dying and about P/EOL care, and thus the good death, as compared to people who live in cities. These views and concerns are based on their having lived in a distinct rural community, coupled with their own personal interests, responsibilities, and experiences; as well as the differences that naturally occur as a result of living in a rural community.

7. Four Research Themes 2. Rural people care deeply about “their” community and its members, and as such are highly motivated to ensure quality P/EOL care services exist in local hospitals and other care sites to address the needs of their dying people. This situation occurred in part over the need to ensure that dying community members had dignified deaths.

8. Four Research Themes 3. A loose network (or patchwork) of P/EOL care providers (both paid and volunteer; and also professional and other) had developed. This network was rural, as they did not look to cities to provide P/EOL care in urban hospitals for their residents – although they realized short-term specialized care occurred in large urban hospitals.

9. Four Research Themes 4. Rural regions had some unique challenges with regard to developing and maintaining P/EOL services, and thus for enabling or providing for good rural deaths. These challenges were with regard to P/EOL health care services and a range of other challenges and considerations affecting the potential for a good death.

10. Research Summary Rural communities have unique needs and challenges with regard to the good death and thus EOL care. Rural communities are highly motivated to develop services that address the needs of their dying community members and their families when present. They do not look to urban centers for EOL care - just for high tech care or short-term specialist care, as well as ongoing advise or education for their own rural/remote purposes.

11. Acknowledgements 2006-2011 CIHR grant funding is gratefully acknowledged. The researcher is also very thankful for the efforts of her RA, Param Bhardwaj, to the rural participants who contributed so openly to this study, and also to the reviewers of this study – your insights and perspectives are needed now to really understand what a “good rural death” means.

12. Research in Perspective This is 1of 10 studies being conducted through a 5-year CIHR ICE program of research (2005-2011), entitled: Timely Access & Seamless Transitions in Rural Palliative/End-of-Life Care. Co-PIs: Allison Williams (McMaster University) and Donna Wilson (University of Alberta)

13. Contact Information: Donna Wilson, RN, PhD Caritas Nurse Scientist and Full Professor Faculty of Nursing, Third Floor CSB University of Alberta, Edmonton, AB T6G 2G3 (780) 492-5574 and fax 492-2551, donna.wilson@ualberta.ca