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

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.

Conflict of interest statement

Competing interests: Jessica Simon reports grants from Alberta Innovates Health Solutions and personal fees from Alberta Health Services, during the conduct of the study. James Downar reports receiving fees for statistical analysis from Toronto General/Toronto Western Hospital Foundation and personal fees from Associated Medical Services Inc., during the conduct of the study. No other competing interests were declared.

© 2017 Canadian Medical Association or its licensors.

Figures

Figure 1:

Conceptual model of improving end-of-life communication and decision-making, showing Audit of Communication, Care Planning, and Documentation (ACCEPT) Study quality indicators. In this model, we propose that advance care planning should ideally occur before hospital admission and inform goals-of-care discussions that occur within hospital. Ultimately, these plans and goals are translated into written documents or medical orders for the use or nonuse of life-sustaining treatments. For medical care at end of life to be consistent with patient values and preferences (the primary outcome), medical orders documented within the hospital records (surrogate outcome) must be concordant with these expressed preferences. Ultimately, the processes of communication and decision-making affect patient and family-centred outcomes, such as knowledge, stress, anxiety, other measures of psychological well-being and overall satisfaction. Given that advance care planning should occur before serious illness or admission to hospital, admission is an opportunity to assess satisfaction with previous advance care planning conversations. Similarly, discharge from hospital is an opportunity to measure patient satisfaction with goal-of-care discussion and decision-making.

Figure 2:

Patient flow diagram. Patients or family members who are excluded may fall into multiple categories of exclusion. ACCEPT = Audit of Communication, Care Planning, and Documentation study.