A systematic review of measures of end-of-life care and its outcomes.

For the vast majority of Americans, the end of life includes a prolonged experience of chronic progressive disease, often associated with uncertainty, pain, suffering, and cost (Hogan et al. 2000; Lunney et al. 2003; National Consensus Project 2004; Teno 2005). For these reasons, coupled with an expansion of knowledge and research in managing and improving the dying experience, end-of-life care has been designated as a priority area for quality improvement, policy change and implementation, and cost effectiveness of work (Institute of Medicine 1997; Institute for the Future 2003; National Consensus Project 2004). In order to address end-of-life care, clinicians, administrators, researchers, and policy makers need to be able to evaluate the patient and caregiver experience. However, end-of-life care is not a singular entity with a universal experience and well agreed upon course of care. Prognostication is poor and imprecise for most conditions, and patients and caregivers cope with illness for years, often with different trajectories of functional decline and needs (Lynn et al. 1997; Steinhauser et al. 2000, 2001; Patrick, Engelberg, and Curtis 2001; Lunney et al. 2003; Patrick et al. 2003; National Consensus Project 2004). The differing patterns of decline, as well as variable factors such as age, race, gender, culture, and preferences, suggest the need for diverse measures to assess the full spectrum of patients' and caregivers' end-of-life experience. From the health care system and policy perspective, it is also useful to consider the role of settings of care such as nursing homes, hospitals, home care, or hospice all play important roles and face different challenges in delivering care. Substantial consensus derived from expert opinion and confirmed through nationally representative surveys of patients, families, and providers has established the principle domains to guide evaluation of the end-of-life experience (Hanson, Danis, and Garrett 1997; Lynn et al. 1997; Singer, Martin, and Kelner 1999; Steinhauser et al. 2000, 2001; Patrick, Engelberg, and Curtis 2001; Patrick et al. 2003; Wenrich et al. 2003; National Consensus Project 2004; Teno et al. 2004). Patients and families endorse important concerns including the extent to which care addresses pain and other physical and emotional symptoms, advance care planning, continuity of care, spiritual well-being, practical support for caregiving, and overall satisfaction. End-of-life care and palliative care have evolved over the last two decades to apply increasingly rigorous scientific methods to assess outcomes in these domains (National Consensus Project 2004; Teno 2005). Developing an adequate evidence base for improving end-of-life care requires reliable and valid measures of the patient and caregiver experience that also allow for comparability across the important care settings, populations, and clinical conditions. As a part of systematic review of end-of-life care and outcomes, we identified measures that evaluate domains of the patient and caregiver experience and described their psychometric properties. Our objectives were to characterize measures that are available for evaluating end-of-life care and to characterize their use in the highest quality intervention studies that have been conducted in the field.