Abstract
BACKGROUND: Prior studies attempting to improve end-of-life care have focused on specific outcomes deemed important to healthcare providers, with disappointing results. Improvement may be best achieved by identifying concerns important to individual patients, communicating the patients' concerns to the treating medical team, and repeating the process frequently until all concerns are addressed. Our objective was to conduct a preliminary evaluation of this innovative patient-centred quality improvement strategy. METHODS: Initial interviews elicited participants' ideas for improvement, which were then fed back to health care providers by the study investigator. A rapid-cycle change model ensured frequent reassessment and continued feedback. The study involved 36 seriously ill, hospitalized patients on teaching general medical inpatient units of a tertiary care hospital. The main outcome measure was participants' ratings of satisfaction within different domains of care on follow-up interviews. RESULTS: The proportion of participants who rated various aspects of their care as "excellent" or "very good" on initial interview was 72% for overall care, 64% for symptom control, 66% for level of support, and 75% for discussions about life sustaining treatments. Patients and families identified many actionable steps for improvement such as; better control of pain and shortness of breath, better access to physicians and medical information, more help with activities of daily living, improving the patient's environment, and shorter waits for nursing care, diagnosis, and treatment. Following feedback to the clinical team, participants reported improvement in overall care (32%), symptom control (44%), and support (40%). Only a minority had further discussions about life sustaining treatments. CONCLUSION: A patient-centred approach using rapid-cycle change was feasible and shows promise for improving the quality of end-of-life care. It should be evaluated on a larger sample in a controlled trial.