Difficult Decisions: tube feeding for neurologically impaired nursing home residents

Nursing home residents with degenerative neurological disorders such as Parkinson’s disease, motor neuron disease, multiple sclerosis and dementia can be expected to experience problems with eating and drinking as a result of impaired swallowing in the advanced stages of disease. Despite this being an almost inevitable development, the response of health professionals when it occurs is often unplanned, unsupported by current evidence and out of step with the expressed wishes of patients. Nursing home staff and residents’ families tend to find the process of deliberating over whether or not tube feeding should be implemented difficult and divisive. Often feeding via a percutaneous gastrostomy tube is implemented despite widely held misgivings. Documenting residents’ preferences (often not to be tube fed) in advance is no guarantee of an outcome in favour of the choice made. Consequently patients may endure discomfort and distress over a costly and unwanted intervention that may fail to bring any benefit. This article considers the extent to which nursing home residents with advanced neurological disorders are tube fed and whether it is unnecessary and unjustified as is often reported. The aim is to contribute to discussion on how best to improve patient-centred care for nursing home residents with advanced neurological conditions who face difficulties with eating and drinking.