To our knowledge, this is the first evaluated attempt in a clinical setting to improve end-of-life care by combining rapid-cycle change and a patient-centred perspective. In our patient population we found plenty of room for improvement with 28% of patients and families reporting their satisfaction with overall care as only "good", "fair", or "poor." Patients and families identified 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, improvement of the patient's environment and shorter waits for nursing care, diagnosis, and treatment. Our strategy was associated with improvements in ratings of overall care, symptom control, and support. We made little improvement in the area of discussions regarding life sustaining treatments as few patients asked for further discussions on life sustaining treatment issues and such discussions rarely occurred without feedback.
The reported improvement in multiple domains of end-of-life care in our study is in contrast to the disappointing results of previous trials to improve end-of-life care [3, 4]. The largest of these studies, the SUPPORT trial failed to change physicians' behaviors or measurable outcomes . One possible reason for the SUPPORT trials' lack of significant change was the untargeted focus on life-sustaining treatments or pain. By contrast, we focused on issues deemed important by individual patients, and found pent up concerns of dying patients and their families that had not been addressed by the standard provider-focused approach to end-of-life care. Few patients identified life sustaining treatment discussions as a priority, and for many of our patients, pain was not the primary symptom of concern. Our approach released patients' concerns into the care process allowing for individually important change to occur. We strived for frequent and complete feedback to our treating physicians. In the SUPPORT study, although complete feedback was the intent, only 34% of study physicians recalled receiving any feedback .
The rapid-cycle change model utilized in this study has had prior successes in end-of-life care. In 1997 the Institute for Healthcare Improvement and the Centre to Improve Care of the Dying used a rapid cycle change program to improve important processes of care, such as time from request to first dose of analgesia [1, 2]. The flexibility of the rapid cycle change method may be well suited for the complexities of end of life care.
There are several limitations to this study. First, there is no concurrent control group so we do not know what participants' perceptions would have been in the absence of any intervention. In our attempt to initiate change we tested this innovative approach for feasibility and utility. It would have been premature to do a controlled trial, but now that we have defined a clear intervention it would be reasonable to proceed with such a study. Second, our data reflects the experiences of a small group of patients at a single hospital. However, despite the relatively small sample size, we were able to show that our innovative approach led to improvement. Third, the intervention and satisfaction assessments were performed by a single resident physician (JP) known to the healthcare staff. The positive effect of the intervention may reflect the popularity and enthusiasm of the interviewer. However, the interviewer (JP) used a standardized questionnaire to identify participant's concerns and acted simply as a conduit between participants and their caregivers. The changes in care were carried out by many different members of the healthcare team. We believe that the major impact was the feedback of patients' concerns, and the role of the individual interviewer was secondary. Finally, there were a relatively large number of potential participants (33.3%) who refused to participate. The number of refusals did not surprise us, as it is consistent with prior work with severely ill patients [1, 2]. Many patients refused because they were too tired, too busy dealing with illness, or not read to talk about their illness. We suspect that these potential participants were not completely satisfied with their care, and would also have responded to a patient-centred quality improvement strategy
Our study tested the utility of an innovative initiative to induce change within end-of-life care. We found that our patient-centred approach using rapid cycle change was feasable and shows promise for improving the quality of end-of-life care. It should be evaluated on a larger sample in a controlled trial