Concise Screening Questions for Clinical Assessments of Terminal Care: The Needs Near the End-of-Life Care Screening Tool

Abstract

End-of-life care has benefited from the recognition that multiple dimensions exist to patient care needs. However, well-designed clinical tools to evaluate these multiple dimensions are few. Such tools are available for evaluations of pain and other specific areas, but clinicians need a sensitive and reliable set of bedside questions to assess and screen individual patients' overall care. We set out to develop a practical tool that we called the Needs at the End-of-Life Screening Tool (NEST). As part of a larger study, we conducted a series of focus groups and interviews with patients, family caregivers, and professionals followed by a survey of a nationally representative sample of 988 patients with a terminal diagnosis. From the former we derived a framework with a full range of identified dimensions that are important in end-of-life care. Dimensions were empirically tested using factor analysis of the patients' survey responses. We developed criteria for selecting questions within the dimensions. Modifications were made to the questions to suit the clinical context. Finally, to assist in their ready use at the bedside, we assigned questions to four core themes of palliative care. Thirteen questions resulted and were assigned themes corresponding, for mnemonic purposes, to each letter of NEST: for Needs (social), for Existential matters, for Symptoms and for Therapeutic matters. NEST is the first data-driven, comprehensive tool designed from an empirically validated framework and tested survey questions for clinical use in end-of-life care. Evaluation of its performance in another population is needed to complete NEST's fuller evaluation.