Daren K Heyland1, Peter Dodek2, John J You2, Tasnim Sinuff2, Tim Hiebert2, Carolyn Tayler2, Xuran Jiang2, Jessica Simon2, James Downar2. 1. Department of Critical Care Medicine (Heyland), Kingston General Hospital; Department of Public Health Sciences (Heyland), Queen's University; Clinical Evaluation Research Unit (Heyland, Jiang), Kingston General Hospital, Kingston, Ont.; Centre for Health Evaluation and Outcome Sciences and Division of Critical Care Medicine (Dodek), St. Paul's Hospital and University of British Columbia, Vancouver, BC; Departments of Medicine, and Health Research Methods, Evidence and Impact (You), McMaster University, Hamilton, Ont.; Department of Critical Care Medicine, Sunnybrook Hospital and Sunnybrook Research Institute; Interdepartmental Division of Critical Care Medicine and Department of Medicine, University of Toronto (Sinuff), Toronto, Ont.; Winnipeg Regional Health Authority Palliative Care Program (Hiebert), Winnipeg, Man.; Fraser Health Authority (Tayler), Surrey, BC; Division of Palliative Medicine (Simon), Department of Oncology, Department of Community Health Sciences and Department of Medicine, University of Calgary, Alta.; Divisions of Critical Care and Palliative Care, Department of Medicine (Downar), University of Toronto, Toronto, Ont. dkh2@queensu.ca. 2. Department of Critical Care Medicine (Heyland), Kingston General Hospital; Department of Public Health Sciences (Heyland), Queen's University; Clinical Evaluation Research Unit (Heyland, Jiang), Kingston General Hospital, Kingston, Ont.; Centre for Health Evaluation and Outcome Sciences and Division of Critical Care Medicine (Dodek), St. Paul's Hospital and University of British Columbia, Vancouver, BC; Departments of Medicine, and Health Research Methods, Evidence and Impact (You), McMaster University, Hamilton, Ont.; Department of Critical Care Medicine, Sunnybrook Hospital and Sunnybrook Research Institute; Interdepartmental Division of Critical Care Medicine and Department of Medicine, University of Toronto (Sinuff), Toronto, Ont.; Winnipeg Regional Health Authority Palliative Care Program (Hiebert), Winnipeg, Man.; Fraser Health Authority (Tayler), Surrey, BC; Division of Palliative Medicine (Simon), Department of Oncology, Department of Community Health Sciences and Department of Medicine, University of Calgary, Alta.; Divisions of Critical Care and Palliative Care, Department of Medicine (Downar), University of Toronto, Toronto, Ont.
Abstract
BACKGROUND: The lack of validated quality indicators is a major barrier to improving end-of-life communication and decision-making. We sought to show the feasibility of and provide initial validation for a set of quality indicators related to end-of-life communication and decision-making. METHODS: We administered a questionnaire to patients and their family members in 12 hospitals and asked them about advance care planning and goals-of-care discussions. Responses were used to calculate a quality indicator score. To validate this score, we determined its correlation with the concordance between the patients' expressed wishes and the medical order for life-sustaining treatments recorded in the hospital chart. We compared the correlation with concordance for the advance care planning component score with that for the goal-of-care discussion scores. RESULTS: We enrolled 297 patients and 209 family members. At all sites, both overall quality indicators and individual domain scores were low and there was wide variability around the point estimates. The highest-ranking institution had an overall quality indicator score (95% confidence interval) of 40% (36%-44%) and the lowest had a score of 18% (11%-25%). There was a strong correlation between the overall quality indicator score and the concordance measure (r = 0.72, p = 0.008); the estimated correlation between the advance care planning score and the concordance measure (r = 0.35) was weaker than that between the goal-of-care discussion scores and the concordance measure (r = 0.53). INTERPRETATION: Quality of end-of-life communication and decision-making appears low overall, with considerable variability across hospitals. The proposed quality indicator measure shows feasibility and partial validity. Study registration: ClinicalTrials.gov, no. NCT01362855.
BACKGROUND: The lack of validated quality indicators is a major barrier to improving end-of-life communication and decision-making. We sought to show the feasibility of and provide initial validation for a set of quality indicators related to end-of-life communication and decision-making. METHODS: We administered a questionnaire to patients and their family members in 12 hospitals and asked them about advance care planning and goals-of-care discussions. Responses were used to calculate a quality indicator score. To validate this score, we determined its correlation with the concordance between the patients' expressed wishes and the medical order for life-sustaining treatments recorded in the hospital chart. We compared the correlation with concordance for the advance care planning component score with that for the goal-of-care discussion scores. RESULTS: We enrolled 297 patients and 209 family members. At all sites, both overall quality indicators and individual domain scores were low and there was wide variability around the point estimates. The highest-ranking institution had an overall quality indicator score (95% confidence interval) of 40% (36%-44%) and the lowest had a score of 18% (11%-25%). There was a strong correlation between the overall quality indicator score and the concordance measure (r = 0.72, p = 0.008); the estimated correlation between the advance care planning score and the concordance measure (r = 0.35) was weaker than that between the goal-of-care discussion scores and the concordance measure (r = 0.53). INTERPRETATION: Quality of end-of-life communication and decision-making appears low overall, with considerable variability across hospitals. The proposed quality indicator measure shows feasibility and partial validity. Study registration: ClinicalTrials.gov, no. NCT01362855.
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