The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End-of-Life Care―Lessons from The Netherlands (Ethnographic Studies in Medical Anthropology Series)

This book is the result of a serious ethnographic study of euthanasia in the Netherland where it has been legalized more than 25 years ago. "Euthanasia talk" consist in an ongoing discussion between terminally ill patients having requested euthanasia, their family and their family doctor: the result being that no more than 10% of these patients get actually involved in doing it. The socio-cultural context of end-of-life situations is convincingly described. This book brings new and thoughtfull insights into a debate which is too often based and biaised by irrational reactions. It demonstrates how death can become a positive and quieting moment when it is the result of a common effort. A must for those concerned by the problem of long-term duration of incurable disease where biological death is increasingly postponed, whereas social death due to the succession of physical (and at times mental) losses and deteriorations preceedes biological death.

Rumors about end-of-life policies in the US health care reform debate of 2009 loomed large, enflaming talk about "death panels" that would "pull the plug on grandma."Anyone who seeks to be informed about alternatives to the current US system (or non-system) for end-of-life care should read Frances Norwood's book, The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End-of-Life Care--Lessons from the Netherlands.In The Maintenance of Life, Norwood provides poignant narratives of home visits, including those that resulted in the voluntary death of the patient. She laces the narratives together with a convincing analysis of how "euthanasia talk" is a critical component of end-of-life care in The Netherlands.What is euthanasia talk? According to Norwood, it is a "discourse," or culturally shaped way of discussing one's preferred death. Euthanasia itself, while an option in The Netherlands, is rarely resorted to. But euthanasia talk is widespread and has five steps. It begins with an initial request by a patient with the huisarts. Of Dr. Norwood's 25 participants who were facing the end of life, 14 had made the initial verbal request. No doctor, however, would grant the request immediately. It must be repeated over time, and family members must be involved in the discussion and agree to the choice. All of this makes for an orchestrated pause in the discussions. The second step requires a written statement. A third step involves setting a date for a second opinion. In the fourth step, the patient repeats the request for a euthanasia date and their reason. The fifth step is a euthanasia death. All along the way, euthanasia discourse is happening.Euthanasia policy in The Netherlands, far from pulling the plug on grandma, gives grandma some sense of agency as she faces death, according to Norwood. It helps reduce, to some degree, the pain of "social death" in which a dying person is no longer considered by family members and others to be the whole person they were before becoming terminally ill. Euthanasia discourse thus serves as a kind of therapeutic narrative which helps to retain a person's social self, identity, and sense of orderliness. Orderliness and control are, according to Norwood, key features of Dutch culture.At the end of her book, Norwood offers insights for US health end-of-life policies. She advises that policies and practices that work in The Netherlands are not easily transferrable to the United States for many reasons, both structural and cultural. The US does not have universal health care and a tradition of home-visiting physicians. The emphasis in the US on individualism means that patients, families, and physicians do not typically work together as a collective. The medicalization of death in the US does not allow sufficient attention to non-medical and cost-effective options that can improve the end of life: home care, nursing and personal care, respite for family members, and coordinated case management.Norwood's book is important, well-written, and will give you much to think about. I hope more cultural anthropologists take up the challenge to study the end of life, social death, and non-medical therapies.Barbara Miller, Associate Dean for Faculty Affairs and Professor of Anthropology & International Affairs at George Washington University, Washington DC. A slightly more detailed review appears on the blog, [...]

This book represents what must have been an enormous amount of research. The author has clearly wrestled an enormous amount of first-hand observation, academic legacy - this from several fields of study - into a clear description and cogent analysis of one of the thorniest intersections of modern medicine and human social organization. Norwood is a dedicated researcher, extending her focus across disciplines, learning the Dutch language to assure accuracy and understanding, citing the theoretical underpinnings of her analysis of the material. It is difficult to imagine how all of this got organized so that it manages to fit between two covers. The book is informative, thought-provoking and exceedingly well documented.One only wishes that a thoughtful copyeditor and proofreader could have given the author the gift of clearing the manuscript of the minor grammatical issues that remain (tense disagreements, word forms, etc.). In addition, while the academic community requires precise documentation at each point in the development of an argument, a lay reader such as myself could do a bit of winnowing to reduce the duplication in arguments across the work.Disclosure - I am a friend of a friend of the author and know her just well enough to say hello to in the street.

Everyone who thinks about end-of-life issues should read "The Maintenance of Life." It is a beautifully written book on an important topic. Anthropologist Frances Norwood spent 15 months in the Netherlands, learning first-hand how the dying, their families, and their physicians confronted this difficult subject. She tells this powerful and touching story with both a close eye for personal detail and a researcher's care. After the depressing debate in the U.S. over "death panels," it is especially important to hear what Norwood has to say: While the Netherlands has allowed euthansia for decades, few there use it. Instead, the simple fact that those with terminal disease have an opportunity to express their wishes makes them less likely to end their lives. It is a powerful lesson for us all.

A psychiatrist concerned with end-of-life issues, I was fortunate to hear the author in person before buying the book. Unfortunately the best word for "good death" is almost taboo in the US. Norwood puts it up front,where it is balanced by humane outcomes, echoed to some extent in Oregon and Washington now. Patients having the option gain comfort and dignity through choice in the face of a bleak future. Frank talks strengthen family and social ties at a crucial time, and the result is powerfully pro-life in spirit and outcome. Unfortunately U.S. physicians & nurses (and ordinary folks) are mostly tongue-tied when dying comes up. This book is a model of anthropological research with major implications for health care, psychology and philosophy.