title: Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone.
abstract: BACKGROUND
  While there is debate about whether it may be better to forgo than to initiate artificial nutrition and hydration (ANH) in nursing home patients with severe dementia, the consequences of forgoing ANH in these patients, in particular their discomfort, have not yet been investigated.
  
  
  METHODS
  In this prospective, longitudinal, observational study of 178 patients in Dutch nursing homes, discomfort was measured at all measurement times according to the observational Discomfort Scale-Dementia of Alzheimer Type. Furthermore, at all measurement times, plausible determinants of discomfort were registered. Data were analyzed with the statistical technique of generalized estimated equations.
  
  
  RESULTS
  Decisions to forgo ANH were made most often in severely demented, female patients with an acute illness as the most important diagnosis at that time. The mean level of discomfort was highest at the time of the decision and decreased in the days thereafter. There were substantial differences in level of discomfort between patients. Dyspnea, restlessness, and physicians' observations of pain and dehydration were associated with higher levels of discomfort. Furthermore, patients who were awake had higher levels of observed discomfort than patients who were asleep.
  
  
  CONCLUSIONS
  Forgoing ANH in patients with severe dementia who scarcely or no longer eat or drink seems, in general, not to be associated with high levels of discomfort. The individual differences emphasize the need for constant attention for possible discomfort.
authors.affiliation: Department of Public Health, VU University Medical Center, and Nursing Home Slotervaart, Amsterdam, the Netherlands. hrw.pasman@vumc.nl
authors.forename: H Roeline W
authors.initials: HR
authors.lastname: Pasman
authors.forename: Bregje D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
authors.forename: Didi M W
authors.initials: DM
authors.lastname: Kriegsman
authors.forename: Marcel E
authors.initials: ME
authors.lastname: Ooms
authors.forename: Miel W
authors.initials: MW
authors.lastname: Ribbe
authors.forename: Gerrit
authors.initials: G
authors.lastname: van der Wal
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000628:therapy*; D003625:Data Collection; D003704:Dementia / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D009426:Netherlands; D010146:Pain / Q000209:etiology*; D010147:Pain Measurement; D011446:Prospective Studies