by Barbara Miller

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.

Dr. Norwood has a PhD from the joint medical anthropology program at the University of California at Berkeley and San Francisco. For her dissertation, she chose an unusual and challenging topic: the day to day experience of dying and death. She decided to carry out fieldwork in The Netherlands because it has the longest legal practice of euthanasia and assisted suicide and is known for its end-of-life policy. She studied Dutch and then spent 15 months in and around Amsterdam accompanying huisartsen (physicians of the home) on their visits to terminally ill people. She interviewed patients, family members, physicians, home care employees, advocates, and researchers. The core of her research is intensive observation and discussions with 10 huisartsen and 25 of their end-of-life patients and their families.

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.

In The Netherlands, the percentage of euthanasia deaths has been around 2 percent of all deaths since 1990; the percentage of assisted suicides is even lower, around .1 percent. In 2005, fewer than 1 in 10 people who initiated requests died by euthanasia or assisted suicide. Of those who made concrete requests, one in three did so.

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.

While humane end-of-life options in the US as a whole seem far from those available in The Netherlands, Oregon’s Death with Dignity Act of 1997, which allows Physician Assisted Suicide, is a positive step forward. Clearly, there is a need for a much more comprehensive look at end-of-life options than is provided for through the initiative called National Healthcare Decisions Day (NHDD) — one day a year! And what about provisions in the health care reform package for Medicare to cover the cost of conversations with a physician about end of life choices. A recent request for Medicare coverage for a conversation with a physician about end-of-life options once every five years (!) has met with outraged opposition from Republicans.

Read Fannie Norwood’s book. It’s 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.

Dr. Frances Norwood spoke about her research on euthanasia in The Netherlands as part of the Culture in Global Affairs series at the Elliott School of International Affairs, October 30, 2009.