This book is intended for clinicians relatively new to palliative care who want to learn more about core topics in the field. Practical suggestions for approaching certain care issues are presented. Beyond this, I also hope the text will help readers piece together from overtly disparate topics a more coherent picture of palliative care as it is currently evolving. This book evolved out of talks and presentations given to medical students, residents, and fellows trying to learn palliative care fundamentals with me over the past nine years. As such, the text is probably most appropriate for trainees in similar circumstances. I hope that others, both physicians and nonphysicians, may also find something of use. The text was originally designed to parallel a course given by the Stanford Faculty Development Center in end-of-life care [http://sfdc.stanford.edu]. This course presents seven discrete modules:
The last module also addresses how the clinician can work as an agent of change to improve the quality of palliative care in his or her health care system. Not all topics addressed in the course are covered in this book, and certain topics are covered here that are not covered in the course.
Over the past several years many fine texts and other educational tools have emerged that deal with palliative care. Why another book? Learners have different styles and may be drawn to different formats. Some may do best with classic textbooks. Some may prefer interactive multimedia presentations or problem-based learning. In this book I attempt to be clear but not comprehensive; this is not a textbook, nor is it a simple "how-to" manual. Excellent examples of these types of texts exist, and I do not wish to write another one. I am striving to make some sense of palliative care as I have come to understand it - via stories. While I sometimes highlight issues with stories of people, most of these stories attempt to make sense of certain aspects of palliative care. Many stories emerge from core questions about the nature of what we do, such as why are we doing such a poor job caring for very sick and dying people and what is the relation of hospice to palliative care. While some stories address "big-picture" issues such as these, others are quite practical in their implications. It is often helpful in learning how to treat certain symptoms to make stories about some otherwise complicated pathophysiology and then devise related strategies for treatment. The complex mechanisms of nausea, for example, can best be understood if we first think about why we experience nausea and vomiting, which leads to a discussion of the pathophysiology of nausea and finally suggestions for treatment. I combine big-picture issues and nitty-gritty aspects of palliative care in this text because, frankly, both are necessary for good practice. Simple how-to manuals risk reducing the practice of palliative care to recipes, when, in fact, all of us, patients, families, and clinicians, are struggling with big-picture questions when encountering suffering and death. On the other hand, philosophy divorced from practice is a weak brew. Suffering manifests itself concretely in specific pains and agonies that must be addressed in very practical ways. Thus, certain how-to skills will also be discussed within the contexts of particular stories.
Throughout the text I highlight certain points as palliative care notes. Focusing on certain points to the exclusion of others reflects personal biases on my part and even a certain arrogance in directing the reader toward these rules of thumb. For this I ask forgiveness. My hope is that these points will be useful to the reader and serve as guiding principles and, occasionally, as morals to my stories.
We are not so different from our ancestors, who used to sit around campfires telling and hearing stories. People live, learn, and remember through storytelling. The stories presented here reflect my current level of understanding and my efforts to transmit this understanding. While I attempt to provide what evidence I can to support this understanding, for better or worse this text emerges from the thinking and the practice of one palliative care physician. The reader is advised not to accept my writing uncritically. Please do the much needed work for expansion of the evidence base underlying such stories. Test these stories through your practice and your study, and then defeat this level of understanding. In this process I hope you will create new stories to share with others.
For my daughter, Mika
J. L. H., Palo Alto, California
1. Hallenbeck, J. L. and M. R. Bergen. A medical resident inpatient hospice rotation: Experiences with dying and subsequent changes in attitudes and knowledge. Journal of Palliative Medicine 1999; 2(2): 197-208.
Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.