Objective: To determine the level and course of discomfort after the decision was made to forgo artificial nutrition and hydration (ANH) in nursing home patients with severe dementia who scarcely or no longer eat and drink.
Design: Longitudinal questionnaire investigation.
Method: In a prospective, longitudinal, observational study conducted in 32 Dutch nursing homes, discomfort was measured in 178 patients using the observational 'Discomfort scale for patients with dementia of the Alzheimer type' (DS-DAT) at various time points: on the day of the decision to discontinue ANH and 2, 5, 9, 14 and 42 days thereafter. Data on factors that may have influenced the degree of discomfort were also collected at all time points.
Results: The decision to forgo ANH occurred most often in severely demented female patients with an acute illness. Overall, 134 patients (75%) died within 1-2 weeks after the decision. The mean level ofdiscomfort was highest on the day of the decision and decreased thereafter. However, the degree of discomfort differed substantially among patients. The presence of dyspnoea, restlessness, and physician-observed pain and dehydration were associated with higher levels of discomfort. Patients who were awake had higher levels of observed discomfort than patients who were asleep.
Conclusion: Discontinuing ANH in patients with severe dementia who scarcely or no longer eat or drink was not generally associated with high levels of discomfort and therefore appears to be an acceptable decision. The individual differences emphasise the need for constant attention to distressful symptoms.