Research O ver the past decade, several initiatives have been established to attempt to improve end-of-life care.
1-3Quality of life for terminally ill patients, 4,5 quality of death and dying 6,7 and quality care at the end of life 8 are related concepts that have been evaluated in these efforts to improve end-of-life care. Quality of care at the end of life is distinguished from quality of life and of death by its focus on the optimization of care and satisfaction with care, clearly linking quality measurement and quality improvement.
6,9Unfortunately, initiatives to improve satisfaction with endof-life care remain hampered by our nascent understanding of what quality care means to patients and their families, and how it is best measured.9-11 Several experts and professional societies have attempted to define the specific components and related areas (domains) involved in quality end-of-life care;12-16 in contrast, patient and family perspectives are surprisingly lacking.Most previous studies of quality have focused on outpatients and people with cancer.17-21 We recently documented that most Canadians (> 70%) die in hospitals, and the majority of decedents are elderly patients who died from causes unrelated to cancer.22,23 The trajectory of a patient dying from cancer differs from one dying from other, chronic, end-stage medical conditions.24 Thus, issues deemed important to quality end-of-life care that were identified by previous investigators may not be generalizable to seriously ill patients with advanced disease other than cancer, who have a more uncertain prognosis.The primary purpose of this study was to describe what seriously ill patients admitted to hospital and their family members consider the key elements of quality end-of-life care. Our secondary objectives included exploring whether differences in ratings of importance exist between patient and caregiver subgroups and between patients and family members.
MethodsWe designed a cross-sectional survey to be conducted at 5 tertiary care teaching hospitals across Canada. From west to east, they were St. Paul's Hospital, Vancouver, BC; Royal Alexandra Hospital, Edmonton, Alta.; Toronto General Hospital, Toronto, and Kingston General Hospital, Kingston, Ont.; and Queen Elizabeth II Health Sciences Centre, Halifax, NS.