Patients with life-limiting illnesses, and their families, struggle with complex treatment decisions as these patients approach the last few years of life. Surrogates often do not clearly understand the patient's goals for future medical treatments.
To determine if a disease-specific planning process can improve surrogate understanding of such patient goals for future, medical treatments.
Design, Setting, and Participants
A multisite randomized controlled trial conducted between January 1, 2004 and July 31, 2007 in 6 outpatient clinics of large community or university health systems in 3 Wisconsin cities. Subjects were patients with either chronic congestive heart failure or chronic renal disease and their surrogate decision makers. Participants had to be competent, English-speaking adults at least 18 years of age.
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 to the degree of decision-making latitude granted to the surrogate.
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.
Three hundred thirteen patient-surrogate pairs completed the study. As measured by Kappa (κ) 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 κ scores ranged from 0.61 to 0.78, while control group κ scores ranged from 0.07 to 0.28.
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.