Book review: Narrative endings

A few months to live: different paths to life’s end Jana Staton, Roger Shuy and Ira Byock Washington: Georgetown University Press; 2001. 358 pp US$26.95 ISBN 0-87840-841-X Drawing on the experiences and perspectives of nine terminally ill people and their families, A Few Months to Live provides a powerful and moving account of the diverse ways in which people approach the last months and days of their lives, and of the difficulties and challenges faced by caregivers and loved ones. The book is based on a study conducted by two of the authors in 1997 as part of the Missoula Demonstration Project, which was created to study end-of-life experiences and to initiate improvements in end-of-life care in Missoula County, Montana. The aim of the authors — Jana Staton and Ira Byock worked on the Project, and Roger Shuy is a research professor of linguistics — is to provide a record of the lived experience of dying and of caregiving. The narrative accounts of patients, caregivers, family members, friends and others were derived by combining tape-recorded conversations, observations, field notes and printed materials. The researchers conducted informal tape-recorded conversations with each patient until the time of death and conducted interviews with caregivers from between two and ten months after the patient’s death. A Few Months to Live is intended for a broad professional audience, including not only clinicians and health care researchers, but also their colleagues in a wide range of disciplines, including sociology, philosophy, theology and public policy. Addressing such a diverse audience is challenging, but the authors succeed by covering a wide range of topics. The book’s 12 chapters address issues related to health professional–patient communication, the process of treatment planning and the way in which patients’ choices are made, knowledge of illness, attitudes toward pain and death, family caregiving, personal growth, spiritual concerns and the search for meaning, and the many complexities surrounding grief and bereavement. One of the main strengths of the book is that it captures the less visible elements of patient and family perspectives. Participants describe what it is like to cope with unrelenting pain, increasing physical incapacity, financial strain related to rising medical expenses, and changes in relationships. The voices of patients are poignant and compelling as they describe their ways of finding meaning, hope and a sense of personal control and dignity in spite of their illness. The first chapter of the book introduces the nine study participants and their families, all of whom were residents of Missoula County in 1997. This chapter provides a profile of each patient, detailing his or her diagnosis, treatment and level of functioning at the time of the study, as well as information on the family constellation and the nature of the family’s involvement in care. Throughout the book, the reader is witness to specific aspects of the patient’s and family’s experience of terminal illness, such as the process of planning care, the patient’s knowledge and understanding of the illness and the multifaceted challenges of daily coping. Through narrative, the authors convey the various ways by which patients and their family members attempt to reconnect, to nourish the self and to find meaning despite physical and emotional trauma. Although each chapter invites consideration of some theoretical aspect of end-of-life care, it is the personal experiences of patients and their family members that lead the reader to ask critical questions and re-examine the assumptions of palliative care. Three chapters, for example, deal with communication in relation to knowledge of illness, and with theories of knowledge in a “closed context” and in an “open context.” It is, however, the frank and honest replication of the patient’s “voice” that helps us to understand what the patient prefers to “know” and to understand in the context of his or her illness and prognosis. In the course of reading this book, it becomes evident that the nine people in the study are both living their stories and transforming them into words. Many of the accounts, especially those in a chapter on final days, are necessarily presented from the perspective of close family members or caregivers rather than of the patient. Some readers may object that these accounts are shaped more by the narrator than by the patient. Undoubtedly, we need to be aware of the relationship between the patient and the narrator. The researchers do attend to the problem of losing the patient’s voice, however, by presenting the narrative accounts of the closest caregiver. That being said, what may be most important to observe in these constructed accounts is what we learn about the caregiver-narrators. From them we learn about the importance of human connectedness and close family presence in the patient’s final days, and that personal relationships remain a primary source of care for people who are terminally ill. The narratives of family members, close friends and informal caregivers reflect strength, wisdom, empathy and active listening, as well as loving support and care. This is a welcome balance against our tendency to professionalize human problems. In their introduction, the authors ask, “What individual and collective responsibility do we have toward people who are dying, family members, friends, neighbours? What value is there in the last phase of life? Can there be any value in the process of dying?” In striving to provide narrative accounts that extend “beyond the usual categories of facts and figures of death and dying,” A Few Months to Live offers a moving, provocative and frank response to these questions.