Medical Decision-Making at the End of Life


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Title Medical Decision-Making at the End of Life
Period 07 / 2002 - 01 / 2006
Status Completed
Dissertation Yes
Research number OND1286247


- Project summary: Medical end-of-life decisions may occur at any medical setting where patients die, i.e. in hospitals, in nursing homes, and at home, where the general practitioner is often the attending physician. They include decisions about whether or not to withdraw or withhold potentially life-prolonging treatment, decisions on alleviation of pain or other symptoms with drugs in dosages large enough to invoke hastening of death, and decisions on euthanasia or physician-assisted suicide. In 1990/1991 and 1995/1996 nation-wide studies were conducted in the Netherlands on the incidence and the circumstances of euthanasia and other medical end-of-life decisions. The study of 1995/1996 was also aimed at evaluating the procedure of reporting cases of euthanasia and physician-assisted suicide. In 1998, a new procedure (the notification procedure) of reporting cases of euthanasia and physician-assisted suicide was introduced. The purpose of the current, third nation-wide study is to update data on end-of-life decision making in the Netherlands and to evaluate the new notification procedure. Therefore we perform 4 studies in the Netherlands: 1. A retrospective study of the incidence and major characteristics of end-of-life decisions that preceded death in randomised samples of death cases (Death Certificate Study). This study is aimed at providing a strong quantitative framework of the incidence and main characteristics of end-of-life decisions. 2. 470 interviews with physicians who represent 95% of all deaths (general practitioners, nursing home physicians, specialists and pediatricians). This study is mainly aimed at giving insight into the experiences and attitudes of physicians towards end-of-life decision making. 3. 175 interviews with a random sample of physicians who reported a case of euthanasia or physician-assisted suicide. This study also includes interviews with relatives. 4. A public opinion study: 1500 adults are asked about their opinions on end-of-life decision making. The Death Certificate Study is also conducted in 5 other countries: Belgium, Denmark, Sweden, Italy and Switzerland. This international project also includes a cross-sectional postal survey on the practices and attitudes concerning end-of-life decision making among physicians. - Progress: The data collection for the death certificate study is currently carried out in all six countries mentioned. This also holds for the Dutch interviews with 645 physicians. Questionnaires for the public opinion study and for the interviews with relatives are in development. This also applies for the international cross-sectional physicians survey.

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Supervisor Prof.dr. P.J. van der Maas
Researcher Dr. A.M. Vrakking
Project leader Prof.dr. A. van der Heide
Doctoral/PhD student Dr. J.A.C. Rietjens


A73000 Primary health care and second-line health care
D23380 Primary care (including General practice)
D24100 Nursing sciences

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