Using Routinely Collected Data to Ascertain Concordance With Advance Care Planning Preferences

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Context: One of the key outcomes of advance care planning is whether patients had received care that was consistent with their expressed goals and preferences. Objectives: The aims of this study were to illustrate the feasibility of using routinely collected health care data that include hospital procedural codes, diagnosis-related codes, health services utilization, and death registry data and to ascertain the level of concordance between care received and the stated goals. Methods: In this retrospective cohort study, medical treatments were ascertained using a combination of hospital procedural codes and diagnosis-related codes. Places of care were obtained by reviewing the sequence of health services used, and the place of death was obtained from the national death registry. To ascertain concordance, medical treatment, places of care, and place of death were compared against the individual's preferences. Results: The sample includes 1731 decedents (aged 21 years and above) who completed their advance care planning documentation as part of a national program. Ninety-eight percent who wished for comfort measures met their preferences. Sixty-five percent of individuals who wished to be cared for at home received care at home. Nearly 40% of all individuals who opted to die at home achieved their wishes, whereas 76% of those who opted for home or hospital and home or hospice had their preferences fulfilled. Conclusion: Administrative data offer a cost-efficient and powerful method for assessing outcomes for a large population-based national program. However, this approach is still at an early stage of development and needs to be further validated before it can be used at scale.




Tan, W. S., Bajpai, R., Low, C. K., Ho, A. H. Y., & Car, J. (2018). Using Routinely Collected Data to Ascertain Concordance With Advance Care Planning Preferences. Journal of Pain and Symptom Management, 56(5), 659-666.e2.

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