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Rural Canada: How satisfied are they with End of Life Care?

Rural Canada: How satisfied are they with End of Life Care?. Daren Heyland Professor of Medicine Queen’s University Kingston, Ontario, Canada. The Ca nadian Researchers at the E nd of Life Net work: CARENET A CIHR sponsored New Emerging Team. Dying In Canada: A Quality Finish?.

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Rural Canada: How satisfied are they with End of Life Care?

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  1. Rural Canada:How satisfied are they with End of Life Care? Daren Heyland Professor of Medicine Queen’s University Kingston, Ontario, Canada

  2. The Canadian Researchers at the End of Life Network: CARENETA CIHR sponsored New Emerging Team

  3. Dying In Canada: A Quality Finish? • “She got so weak she wouldn’t eat in the last week and was having trouble swallowing anything including water. This made it difficult for her to swallow her pain medicine so she was suffering from a lot of pain. There wasn’t enough nursing care for her at home and we didn’t know what we were doing with her. The last week was really bad. She kept saying “Help me” but I didn’t know what to do to help her. I felt so useless. I don’t think anyone really knew what was going on with her and my wife and I sure as heck didn’t know what to do for her. I think the whole experience was badly managed and mom suffered from it. It is really hard for me – I can’t forget how she suffered.” Excerpt from bereavement interview with family member of patient who died in a study.

  4. What Matters the Most to Quality of End of Life Care in Canada Results from Patient’s Perspective N= 440 Heyland CMAJ 2006;174:627

  5. Canadian Health Care Evaluation Project: CANHELP The Satisfaction Questionnaire • consists of 38 (patient) and 40 (caregiver) questions • comprehensive list of actionable items • face and content validity • applicable in cancer and most non cancer population • can be used in patients or families • bereavement version • can be used in a variety of settings • Both French and English versions See www.thecarenet.ca for current version; Heyland Palliative Medicine 2010 (in press)

  6. Defining Priorities to Improve End of Life Care in Canada • Objective: to identify high priority opportunities to improve end of life care. •  Multi-center, cross-sectional survey of patients who had advanced, life-limiting illnesses, and their family caregivers • Administered the Canadian Health Care Evaluation Project (CANHELP) questionnaire along with an overall global rating question to measure satisfaction with end of life care. • Importance was derived from the Pearson correlation coefficients between individual questions on the CANHELP questionnaire and a global rating of satisfaction. • To determine high priority issues, we identified those questions that had high importance and low satisfaction scores. Heyland CMAJ 2010 (in press)

  7. Patients

  8. Performance-Importance Grid for Patient CANHELP Questionnaire

  9. Results

  10. Results: Rural Respondents

  11. Conclusions and Next Steps • We have instruments to measure quality of EOL care • Have identified priorities areas for improvement • Rural not that different from Urban • Plan to disseminate awareness of CANHELP instrument

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