Accounting for Patient Preferences Regarding Life-Sustaining Treatment in Evaluations of Medical Effectiveness and Quality

Abstract

The importance of understanding patient preferences for life-sustaining treatment is well described for individual clinical decisions; however, its role in evaluations of healthcare outcomes and quality has received little attention. Decisions to limit life-sustaining therapies are strongly associated with high risks for death in ways that are unaccounted for by routine measures of illness severity. However, this essential information is generally unavailable to researchers, with the potential for spurious inferences. This may lead to "confounding by unmeasured patient preferences" (a type of confounding by indication) and has implications for assessments of treatment effectiveness and healthcare quality, especially in acute and critical care settings in which risk for death and adverse events are high. Through a collection of case studies, we explore the effect of unmeasured patient resuscitation preferences on issues critical for researchers and research consumers to understand. We then propose strategies to more consistently elicit, record, and harmonize documentation of patient preferences that can be used to attenuate confounding by unmeasured patient preferences and provide novel opportunities to improve the patient centeredness of medical care for serious illness.

Keywords: end-of-life care; epidemiologic biases; quality of healthcare.

Figure 1.

Strategies to facilitate incorporation of patient treatment preferences into evaluation of healthcare outcomes. Blue: Processes to better incorporate patient preferences into healthcare evaluation. Green: Examples of strategies to improve relevant process.

Figure 2.

Example strategy for documenting and incorporating patient preferences into hospital quality measures for sepsis. More granular preference category documentation may improve preference adherence and risk adjustment. Patients may move between quality measures based on preference reassessment and be included in different quality measures based on initial preference and final preference. For example, patients admitted with no limitations would be included in traditional process and outcome measures; patients who change preferences to comfort care after admission preference assessments could also be included in palliative-based quality measures. Dark gray boxes: Examples of standardized preference documentation. White boxes: Examples of process and outcome measures. CPR = cardiopulmonary resuscitation.