Non-treatment decisions concerning demented patients are complex: in addition to issues concerning the health of patients, ethical and legal issues are involved. This paper describes a method for the development of a guideline that clarifies the steps to be taken in the decision making process whether to forgo curative treatment of pneumonia in psychogeriatric nursing home patients.
The method of development consisted of seven steps. Step 1 was a literature study from which ethical, juridical and medical factors concerning the patient's health and prognosis were identified. In step 2, a questionnaire was sent to 26 nursing home physicians to determine the relative importance of these factors in clinical practice. In a meeting of nine experienced physicians (step 3), the factors identified in step 2 were confirmed by most of these professionals. To prevent the final guideline being too directive, a concept guideline that included ethical and legal aspects was designed in the form of a “checklist of considerations” (step 4). Experts in the fields of nursing home medicine, ethics and law reviewed and commented on the concept guideline (step 5). The accordingly adapted “checklist of considerations” was tested in a pilot study (step 6), after which all experts endorsed the checklist (step 7).
The resulting “checklist of considerations” structures the decision making process according to three primary domains: medical aspects, patient's autonomy, and patient's best interest (see annex at end of paper).
- Decision making
- medical futility
- patient advocacy
- practice guidelines
- nursing homes
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Jenny T van der Steen, MSc, is an Epidemiologist and Principal Researcher on the “Pneumonia Study” which has two main goals: identification of prognostic factors for pneumonia in psychogeriatric nursing home patients, and development and evaluation of the “checklist of considerations”. In 1995/96 she performed a pilot study; in July 1996 she was appointed as a PhD student in the Institute for Research in Extramural Medicine (EMGO-Institute) of the Vrije Universiteit, Amsterdam, the Netherlands, to continue with her main study on pneumonia. Data collection for the main study was carried out in 61 nursing homes in the Netherlands. Martien T Muller, PhD, is a Social Gerontologist in the Department of General Practice, Nursing Home Medicine and Social Medicine of the Vrije Universiteit. He also works as a Social Gerontologist at the Nursing Home, Naarderheem, Bussum, the Netherlands. He is a member of the project group of the Pneumonia Study. Marcel E Ooms, MD, PhD, is Project Leader of the Pneumonia Study and is Epidemiologist and Senior Researcher in the Department of General Practice, Nursing Home Medicine and Social Medicine of the Vrije Universiteit. Gerrit van der Wal, MD, PhD, is Professor of Social Medicine in the Department of General Practice, Nursing Home Medicine and Social Medicine of the Vrije Universiteit. He is also a member of the project group of the Pneumonia Study. Miel W Ribbe, MD, PhD, is Professor of Nursing Home Medicine in the Department of General Practice, Nursing Home Medicine and Social Medicine of the Vrije Universiteit. He is also a member of the project group of the Pneumonia Study. All the authors, except for Martien Muller, are also employed by the Institute for Research in Extramural Medicine (EMGO-Institute) of the Vrije Universiteit. Requests for a copy of the guideline should be addressed to the first author. Correspondence address: Jenny T van der Steen, MSc, EMGO-Institute, Vrije Universiteit, Amsterdam, Medical Faculty, Van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands. Tel. +31-20-4448205; fax +31-20-4448181/4448387; e-mail
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