Starting or forgoing artificial administration of food and hydration in psychogeriatric nursing home patients
12 / 1997 - 06 / 2004
[OBJECTIVES:] To determine how often, in what way, in which patients and under what circumstances artificial administration of fluids and food (AAFF) is forgone. To determine how, and on the basis of what (medical) criteria, it is decided to start or forgo AAFF in psychogeriatric nursing home patients, and how the wishes or opinions of the patient and his or her relatives are taken into account in the decision-making. To determine the clinical course and quality of life/dying when a patient is artificially hydrated or fed, and when AAFF is forgone. [METHODS:] Questionnaires were sent to a stratified random sample of physicians attending 6,060 deaths, identified from death certificates. The questionnaires contained 24 structured items on possible medical end-of-life decisions concerning the death in question. Interviews were held with 74 nursing home physicians (NHPs), who were asked to describe the most recent case in which they had withhold treatment from a competent patient and the most recent case in which they had done so in a incompetent patient. A prospective qualitative study, based on participant observations made by two researchers, each in a separate nursing home. The main focus was on the decision-making process, and especially the interaction between patient, relatives, nurses and physicians. A prospective quantitative follow-up study is also taking place in 39 nursing homes. In total, 190 patients have been monitored from the moment they scarcely or no longer ate and/or drank, and a decision about AAFF had to be taken. The main focus was on the clinical course and quality of life/dying after the decision had been taken. [RESULTS:] In 1995, prior to 8% of all deaths in the Netherlands, a decision was taken to forgo AAFF. For deaths in nursing homes, the corresponding figure was 23%. From the results of the prospective study it was found that NHPs, the family and the nurses are the most common participants in the decision-making process. Eventually, the NHP has the greatest influence on the process and outcome, due to his/her central position. In 178 patients (94%) a decision was made to forgo AAFF. NHPs have both medical and non-medical considerations in deciding whether or not to forgo AAFF, such as wishes of the patient, poor quality of life and not unnecessarily prolonging life. Despite the lack of total agreement among the participants with regard to influence and the final decision, almost all participants were satisfied with the decision-making process. Results on the clinical course and quality of life/dying are not available yet.