Abstract
By Yasmin Gunaratnam and David Oliviere. New York: Oxford University Press, 2009, 246 pages, $59.95.
Narrative and Stories in Health Care, is a timely, accessible collection of essays surveying a broad range of narrative theory and story practices as applied to palliative medicine and hospice care. Anyone interested in the uses of narrative in palliative care should read this book.
Each chapter is clear, brief, and written by an expert. There are reports about using patient stories in the care of the bereaved (Way), in spiritual care (Stanworth), and for service development and quality assessment (Cotterell and colleagues). Therapeutic writing with patients (Bolton), with clinicians (Das Gupta and colleagues), educational applications for story telling (Forbes) and the practice of Life Review (Renzenbrink) are all found here.
Oliviere and Gunaratnam have thrown the net wide exposing the reader to a variety of practices and practitioners. They have even included a surprising chapter on coroners, funeral celebrants, and mediums to remind us of the diverse community that surrounds our patients and their families, a community prepared to help with both the concrete and emotional tasks they face.
There are at least two types of stories available in any clinical encounter. One is an illness story and the other is a broader personal life story. Almost always the clinician and patient focus on the story of the illness, since they have a shared understanding of the illness and the goals of treatment. Under these conditions it may not be necessary or useful (perhaps not even welcomed) to develop or pursue the life story. After all the proper focus of medical care is: medical care. There are times, however, when there is a subtle underlying disagreement between clinician and patient about the illness story. When such conflict arises it may indicate that there are aspects of the patient's life story that are influencing the illness story, but are unknown to the clinician. Sometimes knowing more about the patient's life might reduce conflict and significantly affect treatment, compliance, and goals of care:
A.K. is a 79-year-old man admitted to the hospital with a small bowel obstruction that turns out to be stage IV cancer. After 3 weeks in the hospital, he is not sleeping, in significant pain, and often delirious. He's had nothing by mouth since admission. An unproven chemotherapeutic agent is started but it is unclear if it will help.
A.K.'s family is constantly at his bedside. The resident tells them that he has ordered a central line placement for total parenteral nutrition (TPN). Days pass and the family becomes progressively focused on the fact that the line has not been placed and TPN has not started. Their daily questions about the line are met with avoidance by, the nursing staff, the primary team, and three consulting physicians (including palliative medicine). The family becomes distrustful and more persistent in their requests. Days pass. Mrs. K. and her son finally “corner” the primary attending, Dr. P., to demand an explanation. Dr. P. eventually tells them that the team worries that if TPN is started and the chemo does not work the family would be unwilling to discontinue the TPN and A.K. would face a prolonged and agonizing death. Dr. P.'s admission is met with astonishment. The wife and son inform him that the family is well aware of Mr. K.'s poor prognosis and have discussed A.K.'s wishes with him. And, on two previous occasions the family has decided to discontinue life-support for loved ones. The line was placed within the hour.
Getting the whole story is not essential with every patient. But when conflict, confusion, anger, and distrust enter our relationships more story might help. What is story? John Paley opens Narrative and Stories in Health Care with a concise and cogent distinction between “narrative” and “story.” He starts with a joke, “Sherlock Holmes and Dr. Watson go on a camping trip. At 2:00 in the morning, Holmes wakes his companion, who has been in a deep sleep: ‘Look up at the sky, Watson, and tell me what you see.’ ‘I see stars, Holmes. It is a wonderful clear night, and I see a million beautiful stars.’ ‘Excellent,’ replies Holmes. ‘And what, pray, do you deduce from this?’ Watson ponders for a moment. ‘That the universe is immense, awe-inspiring and sublime, and that we are completely insignificant in comparison?’ ‘No,’ says Holmes curtly. ‘Somebody's stolen our tent.’
How unexpected, helpful, and oddly fitting! A joke's structure turns out to be a brilliant example of “story” in its “barest form,” i.e., a series of causally linked events with a protagonist, a point of view, and a punch line. Paley argues that a story must have a telogenic plot, a series of causally linked events in which the end informs (forms, or reforms) the meaning of the beginning and middle. In other words, we don't know what a story means until we know how it ends. For Paley, then, “story” is a more specific type of meaning-making machine than “narrative.” He goes on to point out that sometimes trouble starts with the story, for instance when a story just does not add up.
Look into the guts of the story and you will find two distinct “orders of explanation” at work, Paley tells us. To find out what's wrong, first test the logical order of explanation. Are there gaps? Do things happen that way? Does it make sense? If the story causally flows, test the emotional thread. Does it mislead us by playing to our wishes for consummation, to our desire for resolutions that we find pleasing? These emotional aspects may be in conflict or in concert with the logical structure, highlighting, throwing into shadow, and covering over gaps. All this puts us at risk of confusing an emotionally satisfying resolution with a trustworthy report.
Just about every chapter in Narrative and Stories in Health Care claims or assumes that co-constructing a story with a patient brings benefits. For clinicians, story promises inoculation from burnout, improvement in patient and family alliance-building, facilitation of team meetings where there is underlying conflict, a method for teaching empathy, an approach for handling difficult and painful conversations, a way to develop more valuable services for patients and families, and palliation of difficult situations with patients or families when relationships break down and goals of care become tangled.
Although story has its uses, our present narrative practices unfortunately lack the rigor and focus that would allow us to evaluate what we do, and to judge when we should do it and with whom. At best paying attention to stories may accomplish much of what is promised in, Narrative and Stories in Health Care. But narrative in medical settings can be intrusive and regressive for both patients and clinicians, even pulling us off our core task of clinical care.
Although he avoids these issues, Arthur Frank in his chapter does confront some of the coercive dangers and limits of narrative. He expresses concern about subtle, unspoken ways in which clinicians and medical systems may force a standardized narrative on patients, enforcing a plot-line we prefer rather than supporting the patient in finding his or her own. He suggests that some patient-provider difficulties arise from unacknowledged and conflicting commitments to different genres, and loyalties to different plots.
Narrative and Stories in Health Care, raises other concerns in this reader's mind. For instance, the chapter on narrative research seems narrow and methodologically addled. Narrative research can be performed methodically to produce findings with more than face validity. A cogent interrogation and balanced discussion of several narrative methodologies in this volume would have been helpful. The references do provide relevant primary sources outlining rigorous research practices for those who are interested.
So one leaves Narrative and Stories in Health Care with the realization that “narrative medicine” suffers from a multiplicity of diffuse practices—rooted in literary criticism, or anthropology, or psychology and psychoanalysis, or sociology, or philosophy—and a few thorny questions: What qualifies as a “narrative” intervention? When might it be indicated? With whom should it be done? To achieve what aims? Nevertheless, Gunaratnam and Oliviere have performed an important service to the field with this book. Perhaps in a subsequent collection they will take on some of the questions they've helped to raise.