Dutch perspectives on palliative care in the Netherlands

Issues in Law & Medicine, Fall, 2002 by Raphael Cohen-Almagor

Methodology

A review of the literature reveals complex and often contradictory views about the Dutch experience. Some claim that the Netherlands offers a model for the world to follow, that close monitoring of end-of-life decisions is possible, and there are no signs of an unacceptable increase in the number of decisions or of less careful decisionmaking; (20) others believe that there is a "culture of death" in the Netherlands, (21) that its model represents danger, rather than promise, and that the Dutch experience is the definitive answer regarding why we should not make active euthanasia and physician-assisted suicide part of our lives. (22)

Given these contradictory views, it has become clear that fieldwork is essential to developing a more informed opinion. Having investigated the Dutch experience for a number of years, and after thoroughly reading the vast literature published in English, I went to the Netherlands for one month in the summer of 1999 to get a feel for the local situation. I felt that this would provide the basis on which I could better interpret the findings of the available literature. I visited the major centers of medical ethics, as well as some research hospitals, and spoke with leading figures in the euthanasia policy and practice. The time spent was extremely beneficial and enriching. One should not exaggerate the importance of a one-month investigation, extensive as it might be, but one should not underestimate it as well. I followed in the footsteps of Carlos Gomez, who published a book following one month of extensive research in the Netherlands. (23)

Following the enactment of the euthanasia law in April 2001, I thought it was necessary to examine my interviewees' initial reaction to the new law. In June 2001, I returned to the Netherlands for two additional weeks. Prior to my arrival I had notified most of the interviewees of my arrival and welcomed them to express their views on the legislation process and the role of the regional committees. I also asked whether they have anything to add that is important for the purpose of updating my research.

The first-phase interviews took place during July-August 1999, in the Netherlands. They lasted between one to three hours each. Most interviews went on for more than two hours during which I asked more or less the same series of questions. During the interviews I took extensive notes that together comprise some 200 dense pages. Later the interviews were typed and analyzed.

The interviews were conducted in English, usually in the interviewees' offices. Four interviews were conducted at the interviewees' private homes, and four interviews in "neutral" locations: coffee shops and restaurants. Two interviews were conducted at the office kindly made available to me at the Department of Medical Ethics, Free University of Amsterdam.

The interviews were semi-structured. I began with a list of fifteen questions but did not insist on all of them when I saw that the interviewee preferred to speak about subjects that were not included in the original questionnaire. With a few interviewees I spoke only about their direct involvement in the practice of euthanasia. The list of questions was opened with some general and neutral questions and as the interviews progressed I pressed the interviewees with more critical questions. This article reports the answers to only one of the critical questions concerning the qualified use of palliative care. For limitations of space I cannot possibly report the extensive answers to my fifteen questions. This is done in my forthcoming book Euthanasia in the Netherlands. (24)