Patients' and healthcare providers' understandings of life-sustaining treatment: are perceptions of goals shared or divergent?
ABSTRACT In this cross-sectional qualitative study, researchers performed in-depth, semistructured interviews with 30 pairs of patients and their primary care providers in an outpatient clinic of a large, urban Veterans Affairs (VA) medical center in the United States. During audiotaped interviews to assess their understanding of advance directive concepts, participants were asked what "life-sustaining treatment" means to them and why they think of it in the way they do. The findings indicate that patients and providers in the United States tend to view and discuss life-sustaining treatment in terms of four goals for end-of-life care: (1) extending the length of life, (2) improving the quality of life, (3) maintaining or improving specific biological functions, and (4) assisting the body for a temporary period of time. Patients thought providers were more concerned with extending the length of life than with quality-based outcomes, and patients often discussed life-sustaining treatment as acceptable means for short-term but not long-term use. Many providers indicated that they struggle with conflicting quality-based and physiologic care goals. The findings highlight the importance of eliciting patient preferences not only for specific types of treatment, such as cardiopulmonary resuscitation, but also for end-of-life care goals or desired health-related outcomes, such as maximizing the quantity of life. The findings also suggest that advance directives and patient-provider discussions that focus on acceptable health states and valued life activities may be better suited to patients' end-of-life care goals than those that focus on specific medical interventions.
Article: Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment.[show abstract] [hide abstract]
ABSTRACT: To determine whether a disease-specific planning process can improve surrogate understanding of goals of patients with life-limiting illnesses for future medical treatments. A multisite randomized controlled trial conducted between January 1, 2004 and July 31, 2007. Six outpatient clinics of large community or university health systems in three Wisconsin cities. Competent, English-speaking adults aged 18 and older with chronic congestive heart failure or chronic renal disease and their surrogate decision-makers. 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. 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 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. 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.Journal of the American Geriatrics Society 07/2010; 58(7):1233-40. · 3.74 Impact Factor