Cross-Cultural Considerations in Promoting Advance Care Planning in Canada Andrea Con, Ph.D Research Investigator CIHR Cross-Cultural Palliative NET This report was prepared for the Palliative and End-of-Life Care Unit, Chronic and Continuing Care Division, Secretariat on Palliative and End-of-Life Care, Primary and Continuing Health Care Division of the Health Care Policy Directorate, Health Canada (Contract Reference Number 4500150490). The views expressed herein do not necessarily represent the official policy of Health Canada. Printed February 2008. Layout and design by Melissa Friesen. Please direct inquiries to: Andrea Con, Ph.D. Research Investigator CIHR Cross-Cultural Palliative NET BC Cancer Agency Cancer Rehab/Sociobehavioural Research Centre #600 - 750 West Broadway Vancouver, BC Canada V5Z 1H5 tel: (604) 877-6098 ext. 3258 fax: (604) 708-2091 email: [email protected] Cross-Cultural Considerations in Promoting Advance Care Planning in Canada Prepared for Health Canada by: Andrea Con, Ph.D. Research Investigator CIHR Cross-Cultural Palliative NET November 2007 Table of Contents Advanced Care Planning in Canada TABLE OF CONTENTS Acknowledgements....................................................................................................................... iv Highlights..................................................................................................................................... vi Executive Summary....................................................................................................................... vii 1. Introduction.............................................................................................................................. 1 1.1 Advance Care Planning (ACP)...................................................................................... 2 2. Background............................................................................................................................... 3 2.1 Culture Definition........................................................................................................ 3 2.2 Minority Cultural Group Maps..................................................................................... 5 2.3 Aboriginal Peoples Maps............................................................................................... 6 2.4 Deaf Culture................................................................................................................. 7 2.5 Professional Meso Cultures............................................................................................ 7 2.6 Systems/Institutional Macro Cultures............................................................................ 7 3. Methodology............................................................................................................................. 9 3.1 Scoping Review of the Literature.................................................................................... 9 3.2 Key Informant Interviews............................................................................................. 11 3.3 Focus Groups................................................................................................................ 13 4. Results....................................................................................................................................... 14 4.1 Scoping Review of the Literature.................................................................................... 14 4.1.1 Aboriginal......................................................................................................... 14 4.1.2 Black................................................................................................................ 15 4.1.3 Chinese............................................................................................................ 17 4.1.4 Filipino............................................................................................................. 18 4.1.5 South Asian...................................................................................................... 18 4.1.6 Deaf.................................................................................................................. 20 4.1.7 Health Care Professionals.................................................................................. 21 4.1.7.1 Physicians......................................................................................... 21 4.1.7.2 Nurses............................................................................................. 22 4.1.7.3 Social Workers................................................................................... 23 4.1.8 Advance Care Planning in Canada.................................................................... 24 4.2 Key Informant Interviews............................................................................................. 26 4.2.1 General Themes................................................................................................ 26 4.2.1.1 Death............................................................................................... 26 4.2.1.2 Palliative/End-of-Life Care.............................................................. 27 4.2.1.3 ACP.................................................................................................. 27 Page ii Advanced Care Planning in Canada Table of Contents 4.2.2 General Themes Regarding Cultural Diversity................................................... 27 4.2.2.1 Aboriginal......................................................................................... 29 4.2.2.2 Black................................................................................................ 29 4.2.2.3 Chinese............................................................................................. 30 4.2.2.4 Filipino............................................................................................. 30 4.2.2.5 South Asian...................................................................................... 31 4.2.2.6 Francophone..................................................................................... 31 4.2.2.7 Deaf................................................................................................. 31 4.2.2.8 Health Care Professionals.................................................................. 32 4.2.2.9 Organizations.................................................................................... 34 4.3 Focus Groups................................................................................................................ 37 4.3.1 South Asian groups........................................................................................... 37 4.3.2 Chinese group.................................................................................................. 37 4.3.3 Translator group............................................................................................... 38 5. Discussion................................................................................................................................. 39 5.1 Limitations................................................................................................................... 40 5.2 Conclusions.................................................................................................................. 41 Recommendations........................................................................................................................ 42 Bibliography................................................................................................................................. 44 Appendix A Steering Committee.......................................................................................... 61 Appendix B Key Informant List........................................................................................... 62 Appendix C Focus Group Participants.................................................................................. 67 Appendix D Group Exposure Index for the three largest visible minority groups in Toronto, Montréal, and Vancouver, 1981-2001................................................ 68 Appendix E Visible Minority Groups, 2001 Counts, for Canada, Provinces and Territories - 20% Sample Data................................................................... 69 Appendix F Aboriginal Identity Population, 2001 Counts, for Canada, Provinces and Territories - 20% Sample Data................................................... 70 Appendix G Search Methodology......................................................................................... 71 Appendix H Qualitative or Quantitative Articles Researching Advance Care Planning and Culture............................................................................................................. 73 Appendix I Review Articles or Selected Articles on Advance Care Planning ........................ 80 Appendix J Questions for Ethnic Representatives................................................................ 90 Appendix K Questions for Healthcare Representatives ........................................................ 91 Appendix L Questions for Organizations/Advocacy Groups.............................................. 92 Table 1 Search Topics for the Scoping Review .............................................................. 10 Table 2 Geographic Distribution of Key Informants.....................................................