Dysphagia at the End of Life: What’s a Speech Pathologist to Do?

The difficult decision to recommend non-oral feeding to clients with severe swallowing deficits often falls to the speech-language pathologist. Like most medical professionals, we’ve been trained to intervene – to “do something” – and in the face of intractable dysphagia and aspiration, “nothing by mouth” often appears to be the best option. But, is that actually true? When we work with end-stage dementia and other end of life patients, it may not be.

Three facts about tube feeding near end of life:

1. Tube feeding does not eliminate aspiration or aspiration pneumonia risk.

While non-oral feeding can reduce risk of prandial aspiration, tube feeding cannot keep patients from aspirating their saliva. Patients who are not eating by mouth often experience significant dry mouth, increasing the bacterial load in the oral cavity. In that case, aspiration of even small amounts of saliva can be extremely dangerous. Reflux often increases with tube feeding as well, and aspiration of stomach acids is particularly toxic in the lungs. Dr. Susan Langmore’s landmark studies demonstrate that tube feeding potentially increases the risk of aspiration pneumonia in a variety of patients. ^1,2

2. Tube feeding does not improve nutrition at end of life.

End-stage dementia and other end of life patients can no longer metabolize nutrients, even when provided via enteral feeding. We can continue to deliver calories through oral or non-oral routes, but dying patients no longer possess the ability to use those calories to improve their functional nutritional status. In fact, evidence suggests that continuing to provide nutrition and hydration to a dying patient may actually increase pain and discomfort, reducing the analgesic effects of dehydration.³

3. Tube feeding does not improve quality of life in end of life patients.

If a feeding tube won’t improve nutrition or reduce infection risk in the dying patient, what about improving quality of life and comfort? Unfortunately, family members and medical staff often report negative quality of life in dying patients with enteral feeding tubes. Reports include increased agitation, need for restraints, and sedating medications to keep patients from pulling at the tube, and increased emergency department visits due to infections and other problems with the tube and tube site.^4,5

What can we actually do?

Speech-language pathologists, together with the rest of the team, are responsible for assisting patients and their families in weighing the potential outcomes of any intervention during this difficult and emotional time.

We can help the patients (and their families) identify and communicate their end of life goals and wishes. We can keep patients comfortable by assisting caregivers with positioning and regular oral care. We can support the patients’ participation in the social aspects of eating to help to maintain relationships with family and friends. We can provide communication strategies to ensure that our patients understand the information being presented to them. We can find ways to safely incorporate favorite foods into their diet for as long as possible. There is quite a bit we can DO, if we re-think our definition of intervention.