In what may be the first-ever patient-centered study designed to improve end-of-life care, the Joint Centre for Bioethics at the University of Toronto (JCB) says concentrating on issues considered important by patients and their families produces significant improvement in how dying patients perceive the care they get. The research will be published by the UK-based journal BMC Palliative Care Monday, May 24.
"Some 222,000 people die in Canada alone each year yet we have never before used the impressions of patients and their families to improve the care provided at the end of life," says JCB Director Peter Singer.
"Everyone knows someone who dies in pain. When I do a straw poll with audiences, they generally give a B average to end of life care. This study offers the promise of an inexpensive way to tackle the problem of B-grade end of life care.
"Needed, quite simply, is more systematic, direct and intense patient feedback to doctors and other hospital staff."
The study involved 36 seriously ill patients at a Toronto tertiary care hospital. It assessed how patients' perceptions of care changed after a medical resident (who was not part of the treating team) routinely asked about their concerns and relayed that information to the treating staff.
In the initial interviews, the research showed there was "plenty of room for improvement." More than one quarter of the patients rated their overall care as only "good," "fair" or "poor," 72% reported "very good" or "excellent." Asked about symptom control, 64% said "very good" or "excellent", level of support, 66%, and discussions about life sustaining treatments, 75%.
Patients and their families identified such areas for improvement as better control of pain and shortness of breath, better access to physicians and medical information, more help with daily living activities, improving the patient's environment and shorter waits for nursing care, diagnosis and treatment.
Asked after their concerns were relayed to the senior medical resident and nursing team leader if the care was better, worse or the same, 32% of patients said overall care was better, 44% said symptom control was better, and 40% said support was better.
Says Dr. Singer: "The moral of this study - insert into the busy world of medicine a process to systematically listen to dying patients and their families, and act on their concerns. The care - and the perception of care - gets better. It may not be rocket science, but it seems to make a difference!
"While the results should be further confirmed in a larger study with a control group, the intervention is so straightforward and simple we hope the publication will spur hospitals around the world to try this cheap, easy initiative to improve the care of dying patients."
Says JCB researcher Jeff Powis: "While three quarters of the terminal patients reported very good or excellent treatment, instituting a better system to feed their concerns back to medical staff offers a virtually cost-free - and perhaps obvious - way to improve even further.
"Past attempts to improve end of life care have focused on specific outcomes deemed important to doctors and hospital staff. The results were disappointing. 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-centered perspective," he adds.
"The results are important, showing that this approach is not only feasible but also has the potential to improve the quality of end-of-life care for many people. It's what we should be doing anyway."
University of Toronto Joint Centre for Bioethics
Innovative. Interdisciplinary. International. Improving health care through bioethics.
The JCB is a partnership among the University of Toronto and nine hospitals. It provides leadership in bioethics research, education, and clinical activities. Its vision is to be a model of interdisciplinary collaboration in order to create new knowledge and improve practices with respect to bioethics. The JCB does not advocate positions on specific issues, although its individual members may do so.
The goals of the JCB are:
- To foster interdisciplinary research and scholarship, link education to research, and disseminate research findings to improve policies and practices.
- To support undergraduate, graduate and postgraduate educational programs in bioethics.
- To support clinical ethics activities including continuing education for health care providers, ethics committees, ethics consultation, and projects to address specific issues arising in JCB hospitals.
- To foster collegial discussion of bioethics issues throughout the JCB participating institutions, and to serve as a resource for the media, policymakers, and community groups.
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