Tube feeding in patients with advanced dementia: knowledge and practice of speech-language pathologists.

CONTEXT: Speech-language pathologists (SLP) are often called on to evaluate eating difficulties in patients with dementia. OBJECTIVES: To assess factors associated with SLPs' knowledge and recommendations about feeding tubes in patients with advanced dementia. METHODS: A mail survey was administered to a probability sample of 1500 SLPs from the American Speech-Language-Hearing Association mailing list; 731 usable surveys were received (response rate=53.7%). Self-perceived preparedness, knowledge, and care recommendations were measured. Knowledge items were scored as "evidence based" or not according to the best evidence in the literature. RESULTS: Only 42.1% of SLP respondents felt moderately/well prepared to manage dysphagia. Only 22.0% of respondents recognized that tube feeding is unlikely to reduce risk of aspiration pneumonia whereas a slight majority understood that tube feeding would not likely prevent an uncomfortable death (50.2%), improve functional status (54.5%), or enhance quality of life (QOL) (63.2%). A majority (70.0%) was willing to consider recommending oral feeding despite high risk of aspiration. Logistic regression analyses indicated that those willing to consider this recommendation gave the most evidence-based responses to knowledge questions about tube feeding outcomes: aspiration pneumonia (odds ratio [OR]=1.75, 95% confidence interval [CI]=1.07-2.87), functional status (OR=1.43, 95% CI=1.0-2.06), QOL (OR=2.19, 95% CI=1.52-3.17), and prevent uncomfortable death (OR=1.97, 95% CI=1.37-2.88). Logistic regression analyses also indicated that those with more experience evaluating patients with dementia gave the most evidence-based response to two knowledge questions: aspiration pneumonia (OR=2.64, 95% CI=1.48-4.72) and prevent uncomfortable death (OR=2.03, 95% CI=1.35-3.05) whereas those with higher self-perceived preparedness in managing dysphagia in dementia had less knowledge in two areas: aspiration pneumonia (OR=0.57, 95% CI=0.38-0.84) and QOL (OR=0.72, 95% CI=0.51-1.01). CONCLUSION: Misperceptions among SLPs about tube feeding in advanced dementia are common, especially in relation to risk of aspiration. Knowledge about tube feeding outcomes was positively associated with experience and inversely associated with self-perceived higher preparedness in evaluating patients with dementia.

Using rapid-cycle quality improvement methodology to reduce feeding tubes in patients with advanced dementia: before and after study.

PROBLEM: Despite lack of evidence that enteral feeding tubes benefit patients with dementia, and often contrary to the wishes of patient and family, patients with dementia who have difficulty swallowing or reduced food intake often receive feeding tubes when hospitalised for an acute illness. DESIGN: We conducted a retrospective chart review of all patients receiving percutaneous endoscopic gastrostomy or jejunostomy tubes between March and September 2002. QI interventions including a palliative care consulting service and educational programmes were instituted. We conducted a second chart review for all patients receiving feeding tubes between March and September 2003. SETTING: 652 bed urban acute care hospital. KEY MEASURES FOR IMPROVEMENT: We measured the number of feeding tubes placed in patients with dementia, the number of feeding tubes placed in patients with dementia capable of taking food by mouth, and the number of feeding tubes placed in patients with dementia with an advance directive stating the wish to forgo artificial nutrition and hydration. STRATEGIES FOR CHANGE: Medical and allied health staff received educational programmes on end of life care and on feeding management of patients with dementia. A palliative care consulting team was established. EFFECTS OF CHANGE: After the interventions, the number of feeding tubes placed in all patients and in patients with dementia was greatly reduced. LESSONS LEARNT: Multidisciplinary involvement, including participation by the administration, was essential to effect change in practice. The intensive focus on a particular issue and rapid change led to "culture shift" within the hospital community. The need to establish unified goals of care for each patient was highlighted. BACKGROUND: A growing body of research over the past decade has questioned the utility of placing feeding tubes (percutaneous endoscopic gastrostomy (PEG) or jejunostomy) in patients with advanced dementia. Studies have found no evidence that feeding tubes in this population prevent aspiration, prolong life, improve overall function, or reduce pressure sores. Additionally, the quality of life of a patient with advanced dementia can be adversely affected when a feeding tube is inserted. The patient may require wrist restraints to prevent pulling on the tube or may develop cellulitis at the gastrostomy site, develop decubitus ulcers, be deprived of the social interaction and pleasure surrounding meals, and require placement in a nursing home. Unfortunately, many doctors are unfamiliar with this literature or face barriers-attitudinal, institutional, or imposed by the healthcare industry-to applying its findings to their practice. Thus feeding tubes are placed in patients who will not benefit from this intervention and whose quality of life in the terminal stage of their illness will be adversely affected. With the expected increase of elderly people with dementia, a great change in doctors' knowledge, attitudes, and practice is necessary to prevent even greater numbers of patients receiving this futile treatment.