Validation of quality indicators for end-of-life communication: results of a multicentre survey

Daren K. Heyland, Peter Dodek, John J. You, Tasnim Sinuff, Tim Hiebert, Carolyn Tayler, Xuran Jiang, Jessica Simon, James Downar, for the ACCEPT Study Team and the Canadian Researchers at the End of Life Network

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. 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. 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). 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.