Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment

Abstract

Objectives: To determine whether a disease-specific planning process can improve surrogate understanding of goals of patients with life-limiting illnesses for future medical treatments.

Design: A multisite randomized controlled trial conducted between January 1, 2004 and July 31, 2007.

Setting: Six outpatient clinics of large community or university health systems in three Wisconsin cities.

Participants: Competent, English-speaking adults aged 18 and older with chronic congestive heart failure or chronic renal disease and their surrogate decision-makers.

Intervention: Trained health professionals conducted a structured, patient-centered interview intended to promote informed decision-making and to result in the completion of a document clarifying the goals of the patient with regard to four disease-specific health outcome situations and the degree of decision-making latitude granted to the surrogate.

Measurements: Surrogate understanding of patient goals for care with regard to four expected, disease-specific outcomes situations and of the degree of surrogate latitude in decision-making.

Results: Three hundred thirteen patient-surrogate pairs completed the study. As measured according to kappa scores and in all four situations and in the degree of latitude, intervention group surrogates demonstrated a significantly higher degree of understanding of patient goals than control group surrogates. Intervention group kappa scores ranged from 0.61 to 0.78, whereas control group kappa scores ranged from 0.07 to 0.28.

Conclusion: Surrogates in the intervention group had a significantly better understanding of patient goals and preferences than surrogates in the control group. This finding is the first step toward ensuring that patient goals for care are known and honored.

Trial registration: ClinicalTrials.gov NCT00204802.

Figure 1

Flow of Study Participants

Figure 2

Effect of Patient Education and Patient Age on Surrogate Understanding of Patient Preferences (Agreement between Patient and Surrogate)