• Daren K Heyland, Dianne Groll, Graeme Rocker, Peter Dodek, Amiram Gafni, Joan Tranmer, Deb Pichora, Neil Lazar, Jim Kutsogiannis, Sam Shortt, Miu Lam, and Canadian Researchers at the End of Life Network (CARENET).
• Department of Medicine, Kingston General Hospital, Ontario, Canada.
• J Palliat Care. 2005 Jan 1;21(3):142-50.

AbstractUnderstanding patients' and family members' perspectives on the relative importance of elements of end-of-life (EOL) care and their satisfaction with those elements will help prioritize quality improvement initiatives. We administered a face-to-face questionnaire containing a selection of 28 elements of care to eligible inpatients with advanced lung, heart, or liver disease, or metastatic cancer, and available family caregivers (FCGs) in five tertiary care hospitals across Canada. 440 of 569 (78%) eligible patients and 160 of 176 (91%) FCGs participated. No respondent reported complete satisfaction with all elements of care. The average satisfaction score was 4.6 on a 26 point scale. Medical patients reported lower levels of satisfaction than cancer patients. Elements rated as "extremely important" and anything other than "completely satisfied" most frequently by respondents related to discharge planning, availability of home health services, symptom relief, not being a burden, physician trust, and communication. In conclusion, most patients and their family members in our survey were not completely satisfied with EOL care. Improvement initiatives to target key elements identified by patients and FCGs have the potential to improve satisfaction with EOL care across care settings.

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