Physicians' Experiences with Demented Patients with Advance Euthanasia Directives in the Netherlands

Authors

  • Mette L Rurup MSc,

    1. From the *Department of Public and Occupational Health, Institute for Research in Extramural Medicine, VU University Medical Center, Amsterdam, the NetherlandsDepartment of Public Health, Erasmus MC, Rotterdam, the Netherlands.
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  • Bregje D Onwuteaka-Philipsen PhD,

    1. From the *Department of Public and Occupational Health, Institute for Research in Extramural Medicine, VU University Medical Center, Amsterdam, the NetherlandsDepartment of Public Health, Erasmus MC, Rotterdam, the Netherlands.
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  • Agnes Van Der Heide MD, PhD,

    1. From the *Department of Public and Occupational Health, Institute for Research in Extramural Medicine, VU University Medical Center, Amsterdam, the NetherlandsDepartment of Public Health, Erasmus MC, Rotterdam, the Netherlands.
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  • Gerrit Van Der Wal MD, PhD,

    1. From the *Department of Public and Occupational Health, Institute for Research in Extramural Medicine, VU University Medical Center, Amsterdam, the NetherlandsDepartment of Public Health, Erasmus MC, Rotterdam, the Netherlands.
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  • Paul J Van Der Maas MD, PhD

    1. From the *Department of Public and Occupational Health, Institute for Research in Extramural Medicine, VU University Medical Center, Amsterdam, the NetherlandsDepartment of Public Health, Erasmus MC, Rotterdam, the Netherlands.
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  • This study was funded by grants from the Dutch Ministry of Health, Welfare and Sports and the Ministry of Justice.

Address correspondence to Mrs. Mette L. Rurup, Department of Public and Occupational Health, Institute for Research in Extramural Medicine, VU University Medical Center, Van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands. E-mail: m.rurup@vumc.nl

Abstract

Objectives: To estimate the incidence of (compliance with) advance euthanasia directives of patients suffering from dementia in the Netherlands and to gain knowledge about the experiences of physicians.

Design: Retrospective interview study.

Setting: Physicians in the Netherlands.

Participants: Four hundred ten physicians.

Measurements: Physicians were interviewed about their demented patients who had an advance euthanasia directive. Nursing home physicians were interviewed more extensively.

Results: Approximately 2,200 demented patients with an advance euthanasia directive die annually after being treated by a physician who knows about this directive. In 76% of such cases, compliance with the directive was discussed, but euthanasia was seldom performed. In two-thirds of the cases of demented nursing home patients with an advance euthanasia directive, the physician was able to identify during the course of the disease a situation for which the patient had intended the directive. One-quarter of the nursing home physicians thought that their most recent patient suffered unbearably to a (very) high degree, and half of them thought that the patient suffered hopelessly to a (very) high degree. In three-quarters of the cases, the relatives did not want the nursing home physician to comply with the directive, but they did want to respect the patient's wishes by forgoing life-prolonging treatment, which occurred in approximately 90% of cases.

Conclusion: Most nursing home physicians think that the suffering of patients with dementia can be unbearable and hopeless as a consequence of dementia, but most physicians do not consider dementia to be grounds for euthanasia, unless perhaps the patient has an additional illness.

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