Book Review : Final crossing

Crossing over: narratives of palliative care David Barnard, Anna Towers, Patricia Boston and Yanna Lambrinidou New York: Oxford University Press; 2000 457 pp $63.95 (paper) ISBN 0-19-51234-3-3 The preface of this wonderful book contains a quotation from Paul Ramsey's The Patient as Person: Upon ceasing to try to rescue the perishing, one is then free to care for the dying. Acts of caring for the dying are deeds done bodily for them which serve solely to manifest that they are not lost from human attention, that they are not alone, that mankind generally and their loved ones take note of their dying and mean to company with them in accepting this unique instance of the acceptable death of all flesh.1 Through the detailed and sensitive presentation of 20 narratives about seriously ill and dying people, the authors of Crossing Over illustrate the complexity and variability of caring for people who are dying. Derived from a three-year prospective ethnographic study of the experiences of real patients, families and their caregivers, these narratives go beyond case reports in their attention to the processes by which patients, families and health care providers find personal meaning in illness, and how personal meaning influences the experience and outcome of care. The book is divided into three sections: an introduction, the narratives and a discussion section on “working with the narratives.” The introduction presents key issues in caring for dying people, the development of palliative and hospice care in the Western world, the process by which the narratives were gathered and written, and the place of this book among other current palliative care texts. The narratives themselves comprise the largest part of the text. The discussion section explains the authors' research methods and offers comments and questions to guide analysis of the narratives. An additional and particularly helpful feature is an index of themes and where they occur in the narratives. The extensive bibliography is most useful. Based on real-life situations, Crossing Over does an excellent job of presenting the reality of caring for the dying from all perspectives. The cases are as complex as the people involved, and things do not always go well. The challenges in complex symptom control, resource constraints, interpersonal interactions and the unique adaptation of each patient and family to illness are found in the narratives. It is refreshing and affirming to find such richness of detail and such an honest and complete presentation of the day-to-day reality of palliative care, a reality that is full of difficulty but also, in the words of the authors, “full of the therapeutic power of human presence, honesty, compassion, humility, humor, and the affirmation of life.” Each narrative is presented with a patient's name and a theme, such as “Jasmine Claude: A study in faith,” “Joey Court: The death of a child,” “Susan Mulroney: A private matter,” “Klara Bergman: Burdens from the past,” “Leonard Patterson: Jagged edges” and “Costas Metrakis: It was not a peaceful death.” Leonard Patterson was a 62-year-old European American with colon cancer. His narrative is a description of poverty, tumultuous family relationships, the complexities of relationships between health service agencies, social services constraints and difficulties in achieving pain control. It is also a portrait of a man who, accustomed to helping others, has great concern for his troubled family's future without him and of a family that is able to rise above some of the very great difficulties they face and to grow in the process. His story is an example of a humane and heroic effort by a hospice team to journey with the patient, assist the family at home and in hospice, and to provide respectful and sensitive care that encompasses the physical, spiritual, social and emotional spheres. I was deeply touched by it. Klara Bergman was an 80-year-old Holocaust survivor, having lost her husband, mother and 14-month-old son (who died of pneumonia) in the camps. Her courage and dignity are evident in her rebuilding of her life and in the way she faces her death. She is deeply troubled in her dying about her decision to have taken her infant son with her to the concentration camp rather than leaving him with friends. The narrative is a sensitive portrayal of how these wrenching decisions affected her life and that of her daughter, who was born later, and the way in which the care team provides support to both. All of the narratives are engrossing. They are also instructive, illustrating how the issues that arise in palliative care can be addressed through a team process. We are fortunate, with the publication of this text, to have an even wider variety of excellent textbooks from which to learn and teach. The unique strength of this book is the deeply human perspective it offers on what is the essence of “person-centred care.” It is the voices of ill people, their families and those who care for and about them that are heard. Reading the narratives provokes self-reflection, something that is invaluable to the physician and other care providers who wish to journey with dying people. Who should read this book? Those who teach palliative care will want to use this book in their work. Practitioners will find that it affirms the work they do. Indeed, all health professionals may find enrichment and inspiration in this text. The title, Crossing Over, is meant to illustrate the many physical, emotional and spiritual leaps that the authors witnessed during their study. Patients, families and care providers “crossed over” to other viewpoints and to new journeys and roles. This book allows us to cross over into the world of the patient and family in a moving and educational way.

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