To develop a questionnaire that could be used to elicit ratings of quality end-of-life care from patients and their family caregivers, we interviewed 440 patients who had cancer or other advanced medical conditions and, where available, their available family members (160 participated). We asked them: 1) what aspects of care were important to their perceptions of good care at the end of life; and 2) how satisfied were they with the care they had received. Participants in our study found it extremely important that they have trust and confidence in the physicians caring for them or their loved ones. Avoidance of unwanted life support, effective communication, continuity of care, and life completion were also rated as highly important (CMAJ 2006). The majority of participants were less than "completely satisfied" with the care they had received (JPC 2005). Continuity of care and discharge planning, symptom management, supportive care, communication and decision making, and patient-physician relationship issues emerged as high priority targets for quality improvement initiatives.
To build on our multi-centre, cross-sectional survey results, we undertook a single-centre longitudinal study involving multiple interviews of patients and families done over a six-month period (JPC 2009). We found again that the majority of respondents were less than "completely satisfied" with important elements of their end-of-life care, and that their satisfaction tended to vary based on location of care (greater at home that in an institution) and satisfaction did not deteriorate over time.
Prior to its widespread use, the CANHELP (Canadian Health Care Evaluation Project) questionnaire was validated it in the francophone Canadian population and subsequently in a large multi-centre project (JPM 2010). We recently completed a multi-institution evaluation of quality EOL in over 350 seriously ill hospitalized patients and their families in 6 institutions in Canada (CMAJ 2010). We identified aspects they considered to be most important to quality care at the EOL and rated their level of satisfaction with those aspects. Aspects of care considered most important and that respondents were least satisfied with were then identified as high priority quality improvement targets. These priority targets included the feeling of peace, assessment and treatment of emotional problems, physician availability, and satisfaction that the physician took a personal interest in them, communicated clearly and consistently, and listened to them. Similar priorities were identified from family members' perspectives, but they identified additional priorities such as timely information about the patient's condition and discussions with the doctor regarding final location of care and use of technology at the end of life. Thus, we concluded that improved relationships with physicians, including better communication, decision-making, and advance care planning are high priority quality improvement targets to improve EOL care in Canada.
The three versions of the CANHELP have been provided on request to health care researchers and are available for download in both French and English. Also, we have created an online version for interactive use by patients/families or health care personnel to provide feedback in the form of an individualized report on satisfaction and opportunities to improve care. The instrument can also be used in clinical practice or in further research to measure patient (or family) report outcomes for an EOL project or interventions (click here).