Measuring the Quality of Palliative Care at End of Life: An Overview of Data Sources

Abstract

Palliative care, and more specifically end-of-life (EOL) care, serves to address the physical, practical, psychosocial, and spiritual needs of dying patients and their families. The quality of this care is critical to reduce the burden of illness and moderate escalating health-care costs. Accordingly, assessing the quality of EOL care is a priority of many governments. This article is an overview of the three main types of data sources that can be used to indicate the quality of EOL care: population-based administrative data, clinical data, and patient-reported outcomes. Existing administrative data are relatively inexpensive to use and provide a whole picture of the health-care system. Clinical data are useful for benchmarking care provided against best practices. Patient-reported outcome measures capture quality as defined by the patient and directly represent impact of care. Understanding the capabilities of these data types is the basis for developing feasible quality assessments to inform program and policy development.

An instrument to assess the education needs of nursing assistants within a palliative approach in residential aged care facilities

“…Evaluation is part of this process and an important aspect of quality improvement, hence the importance of these tools as a means to identifying the gaps and educational shortfalls in nursing assistants’ knowledge, skills and attitudes. Development of core competencies is important because what has been found to matter most to patients and families across palliative care settings relates to those providing care and how care is provided [66]. Key indicators most associated with patients’ quality of life reported by bereaved families were whether health professionals, including nursing assistants, provided the desired physical comfort and emotional support to the dying person, supported shared decision-making, treated the dying person with respect, attended to the emotional needs of the family, and provided coordinated care [66].…”

Persistent socioeconomic inequalities in location of death and receipt of palliative care: A population-based cohort study

“…These outcomes were selected because they are the focus of research and policy 22 and are measurable longitudinally at the population-level using administrative data. 23 Location of death was identified using the Canadian Institute for Health Information’s Same Day Surgery and Discharge Abstract Databases, National Ambulatory Care Reporting System, Ontario Mental Health Reporting System, Continuing Care Reporting System and National Rehabilitation Reporting System databases, which correspond to deaths in hospitals, emergency departments, mental health hospitals, complex continuing care facilities and inpatient rehabilitation facilities, respectively. Any decedent not identified in these datasets at death was considered to have a death in the community.…”

Outcome measures in palliative care training interventions: a systematic review of trial-based studies

“…In fact, it may be unrealistic to expect patient-reported outcomes such as quality of life, mental health, or physical health to be immediately impacted by clinician training. Lastly, health care system outcomes, such as acute care use, are a high level result of behavior change, though these outcomes may be too far downstream from a newly implemented education program for clinicians to show an effect (16,25,85,86).…”

“…The measures cited largely consist of patient or family reported outcomes, including satisfaction with care, quality of life, extent of pain and symptoms, functionality, and health care use. Place of care/death and health care costs were also commonly used system-level outcomes for evaluating palliative care program effectiveness (25). Nonetheless, outcomes for assessing the effectiveness of palliative care programs tend to be different and further downstream from outcomes relevant to evaluating the effectiveness of education interventions on health care clinicians.…”