Review in JAMA (10/2010)

The Maintenance of Life: Preventing Social Death Through Euthanasia Talk and End-of-Life Care—Lessons From The Netherlands

 

By Frances Norwood
293 pp, $35
Durham, NC, Carolina Academic Press, 2009
ISBN-13: 978-1-5946-0518-5

JAMA. 2010;304(13):1500. doi:10.1001/jama.2010.1434

 

In The Maintenance of Life, Frances Norwood describes her doctoral dissertation research in the Netherlands. To understand this book, the reader must understand the definitions of 2 terms used in the title and throughout the book. Norwood defines social death as “a series of losses—loss of identity and loss of the ability to participate in social activities and relationships that eventually culminates in a perceived disconnection from social life” (p 7). In other words, one dies socially long before one dies physically in that one can no longer have the roles or do the things that gave one meaning. Euthanasia talk is defined as “a discussion for the purpose of planning a person’s euthanasia death. It is also, however, a product of discourse, a cultural form that shapes the production, practice, and interpretation of life and end-of-life” (p 30). In other words, the conversations include much more than the how and when of death but also the who, what, and where of life.

 

Readers familiar with the Dutch proeuthanasia stance might assume that that many Dutch citizens die by euthanasia or that physician-assisted deaths are easily arranged in the Netherlands; this book asserts that neither of these assumptions is true. To assist the huisarts (physician) in making the decision to even broach the topic of euthanasia, there are multiple rules as to which patients qualify and additional rules that a physician must follow after an initial discussion. In contrast to many physicians in the United States, Dutch physicians typically know families over the course of years and care for multiple generations. In addition, they make house calls each day, hence the term huisarts, literally, “doctor of the house.” As such, they know—firsthand—a patient’s family, living situation, interests, etc. It is for this reason that the Dutch believe that the huisarts is the perfect person to encourage conversation about a patient’s end-of-life care. As Norwood points out, the Dutch value order and control, and they believe that euthanasia talk can bring order and control to the chaos that a loved one’s dying often visits on a family.

 

In addition to providing a brief history of euthanasia focusing on the Dutch perspective, the author includes chapters on the huisarts, the garden (a real and symbolic place of beauty and peace in Dutch culture), and the family of the dying person. These chapters clarify the actual Dutch experience. For example, the huisarts takes the responsibility not only for starting the conversation about assisted death but also for slowing down the process if it seems that a number of family issues remain unresolved. Also, many euthanasia talks do not end in euthanasia. Norwood notes that euthanasia talk has 5 stages: initial euthanasia request, written declaration of request, second opinion appointment, scheduling euthanasia, and euthanasia death. In Norwood’s observational study of 14 patients who started the process, 3 died by euthanasia. Most patients never went beyond stage 2, meaning that without a second opinion (stage 3), a euthanasia death could not occur (p 44). Observing the entire process, the reader concludes that all involved parties gained a greater appreciation of what the dying person (and his or her family) finds important in life and a greater willingness and ability to openly express such matters to each other.

 

The final chapter focuses on whether the Netherlands experience could become the US experience. For many economic, cultural, and religious reasons, that does not seem likely. The Dutch political and health care systems are radically different from those in the United States. In addition, as a cultural group, Dutch citizens are much more homogeneous than US citizens. Lastly, compared with persons in the United States, the Dutch are far less religious, placing their faith in society (and each other, according to the author) rather than in God. With regard to this last point, regardless of nationality or religious affiliation, those who believe that all life belongs to God will always hold that euthanasia is off-limits, because it violates the basic tenet that taking a life or helping someone to die is never a human decision to make.

 

The Maintenance of Life will not (and is not meant to) change readers’ opinions (con or pro) about euthanasia. Instead, it is “for anyone interested in learning more about death in another culture in order to gain some insight into death where you live” (p xxiii). As such, it presents much food for thought.

 

Financial Disclosures: None reported.

 

Pat Fosarelli, MD, DMin, Reviewer
The Ecumenical Institute
Baltimore, Maryland
pfosarelli@stmarys.edu

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