Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians, by Joanne Lynn, Janice Lynch Schuster, and Andrea Kabcenell. New York. Oxford University Press, 2000. 377 pages, hardcover, $56.00.
Joanne Lynn, MD, is director of the RAND Center to Improve Care of the Dying and president of Americans for Better Care of the Dying. Janice Lynch Schuster is senior writer of Americans for Better Care of the Dying. Her work has been published by The Washington Post and other publications. Andrea Kabcenell, RN, MPH, is senior research associate at Cornell University's College of Human Ecology and has served as director of eight of the Institute for Healthcare Improvement's (IHI) Breakthrough Series Collaboratives.
The authors of this volume have tackled a broad array of very complicated issues. They were joined in this potentially daunting effort by other members of their core team: Phil Higgins, MS; Casey Milne, RN, BSN; Lisa Spear; and Anne Williamson, PhD, MS. In addition, the project involved a number of distinguished contributors and colleagues, as well as the faculty and participants in the IHI Breakthrough Collaborative on Care at the End of Life. Forty-seven organizations participated in this Breakthrough Series. Donald Berwick, MD, wrote the foreword.
The book is well organizedabsolutely essential in a how-to book addressing a collection of subjects as slippery as spirituality, pain, and the confidence of the patient and his or her family in the health care system. In Part I, the Overview, the authors present a comprehensive analysis of the flaws in the quality of care at the end of life, opportunities for improvement, and an excellent plan for bringing about substantive improvement. Following Part I are three principal sections:
* Part II: Improved Patient Care Through Improved Practice and Systems
* Part III: Arrangements to Promote Reform
* Part IV: Opportunities in Specific Diseases
At the end of each chapter is a list of resource materials. The Appendix contains a comprehensive collection of assessment and measurement instruments. There also are an extensive Glossary and list of references.
Incidentally, the pages of this volume are sprinkled with great sidebars. Their en pointe content and succinct style drew my admiration and a series of recognition flashes. Running through the book is an idea that might strike one as ironic, "living well while dying." Achieving this status for dying patients is a primary objective of these Breakthrough Series teams.
The Plan-Do-Study-Act cycle (PDSA) is the fundamental implementation device that is taught here and demonstrated in the case studies. In Part 1, Chapter 2, "How to Make Improvement Happen," and in dealing with each of the problem areas in subsequent chapters, the authors offer some invaluable tips for health care groups committed to change and improvement:
* Identify the objective of the change project, the condition to be changed, and the desired status or outcome.
* Form a team to carry out the project.
* Establish the measures to be used in assessment.
* Define and locate the study population. In this connection, the authors point out that, to effect an improvement for as many patients as possible and to assemble a significant number of patients with the relevant condition, it may be a good idea to create a patient registry, drawing patients from more than one source, if necessary.
* Drawing upon guidelines, benchmarks, and so on, apply the selected modifications to the members of the study population.
* Analyze and evaluate the results, using quantitative data.
* Determine what needs to be done to reach the objective, and develop a PDSA plan.
The authors provide clear and succinct instructions, with real-life examples, of ways to disseminate the mechanisms and results of improvement projects. They recommend the use of story boards to acquaint other health care provider groups with how a project was carried out.
In the five chapters that make up Part II, the authors deal with five subjects that typically emerge as major issues during the late stages of a terminal illnesspreventing and alleviating pain; alleviating the severe discomfort of dyspnea and ventilator withdrawal; going beyond the sparse formulations of an advance directive and promoting detailed, realistic advance plans for care; supporting patient and family through the "difficult times"; and fostering continuity of care and improving patient confidence in the health care system. All of the contributors, from Berwick in the Foreword to the authors and the providers who designed and carried out improvement projects, agree that the health care system has failed to deal effectively with pain. They urge that pain be recognized as the fifth vital sign and dealt with as vigorously as would be serious aberrations in the other four.
In Part III the authors take up several organizational aspects of providing good care at the end of life, including an evaluation of the pros and cons of developing hospital palliative care units and consulting services. They provide a thoughtful analysis of the impact of Medicare reimbursement policies on the quality of end-of-life care. Another chapter in this section addresses ways to use a hospital's electronic information systems in data collection and analysis for quality improvement. Other chapters deal with ways to provide staff with the resources they need to provide good care, and using law and policy to improve end-of-life care.
In the final five chaptersPart IVcertain specific diagnoses are taken up in the context of care needs near the end of life. The authors discuss opportunities and ways to improve care in Alzheimer's disease and other dementias, terminal cancer, depression and delirium, and advanced heart and lung disease.
This is a valuable sourcebook for managers and staff responsible for the care of patients nearing the end of life. Its authors and contributors turn a spotlight on the lack of imagination and the timidity that have sometimes shaped the care given to these patients and the attention given to their emotional concerns. They supply designs, plans, tools, and lists of resources to assist health care providers to evaluate and improve the quality of their own care.