title: [Experience of family members with the decision concerning artificial nutrition and hydration in people with dementia in nursing homes].
abstract: The purpose of this study is to investigate how relatives of nursing home patients with dementia, for whom the decision whether to start or forgo artificial nutrition and hydration (ANH) was made, assess the decision-making process. Furthermore we evaluated the information given by the nursing home staff to the relatives and the care provided by them to the patient. The study was an observational study based on written questionnaires. Relatives of 99 nursing home patients with dementia filled in a questionnaire at the time of the decision-making and 6 weeks after the decision was made or 6 weeks after the patient had died. Almost all relatives assessed the 4 aspects of the decision-making process (number of consults, content of the consults, carefulness of the decision-making and there own part in the decision-making process) at both times as 'good' or 'satisfactory'. Furthermore it appeared that they judged the carefulness of the decision-making process significantly more often as 'good' when they also assessed the other three aspects as 'good'. Especially their own influence on the decision-making process appeared to play a part in this matter. Information about the possible consequences of starting ANH as well as about the condition of the patient were experienced sufficient by almost all relatives. This was also the case for the care offered to the patient. In general almost all relatives reported satisfaction with the decision and with the carefulness of the decision-making process. This satisfaction did not differ between the moment of the decision and afterwards. For this it did not make any difference whether the patient had or had not died.
authors.affiliation: VU medisch Centrum, Afdeling Sociale Geneeskunde, EMGO-Instituut, Amsterdam.
authors.forename: S G R
authors.initials: SG
authors.lastname: Verelst
authors.forename: H R W
authors.initials: HR
authors.lastname: Pasman
authors.forename: B D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
authors.forename: M W
authors.initials: MW
authors.lastname: Ribbe
authors.forename: G
authors.initials: G
authors.lastname: van der Wal
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D003704:Dementia / Q000628:therapy*; D005190:Family / Q000523:psychology*; D005260:Female; D006707:Homes for the Aged; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D009735:Nursing Homes; D018529:Nutritional Support; D010166:Palliative Care; D011795:Surveys and Questionnaires; D028761:Withholding Treatment