Difficulty swallowing is a disturbing symptom that occurs in the vast majority of patients with a serious life-limiting illness. In fact, swallowing disorders, distinct from diminished appetite, are part of the natural process at the end of life, irrespective of the etiology. Difficulty swallowing can impact the quality of life of the patient as well as of caregivers, whose natural instinct to nurture and comfort with food is curtailed. Dysphagia is a poor prognostic sign in patients nearing the end of life, and for many patients with a life-limiting illness, the inability to swallow may represent a pivotal symptom that prompts the decision to consider end-of-life or hospice care.
Swallowing disorders occur frequently in patients with malignancies of the upper aero digestive tract and brain as well as with progressive degenerative neurologic disorders, including dementia. But they can occur as a result of the general debility that develops in patients with a variety of medical illnesses who are near the end of life.
Detection of a swallowing disorder may elude the attention of both patients and caregivers. Silent aspiration (where food enters the upper airway without overt signs of coughing or choking) is a common correlate of dysphagia. In fact, 40 percent of patients who aspirate are said to aspirate silently, and this is more likely in individuals with a serious life-limiting illness where multiple causative factors coexist Clinicians should be alert for surrogate markers of dysphagia, such as general frailty, unexplained fever or cough with chills, alterations in secretion volume, color, or viscosity, chest pain, or dyspnea. Weight loss and poor appetite are predictable at the end of life, but when they coexist with respiratory findings and signs of struggling during eating, a swallowing disorder may be the possible cause.
Speech-language pathologists (SLPs) assess and manage oropharyngeal swallowing disorders across all care settings. The goals of a clinical swallowing assessment are to identify the pathophysiology of the disorder and to determine relevant interventions. The assessment must be framed by an understanding of the overall health status of the patient in conjunction with the patient and caregiver’s wishes and preferences, particularly in relation to nutrition and hydration. As such, the evaluation reaches beyond the physiology of swallowing.
Clinical history — A detailed clinical history and patient description of swallowing complaints is essential in framing the nature of the swallowing problem and establishing the diagnosis. Alterations in eating behaviours, the severity and specific nature of the complaints, the details of disease progression, and prior treatment can provide clues to factors that might predispose the patient to silent aspiration.
Dysphagia management in patients with life-limiting illness will vary according to where the patient is in their illness relative to the end of life. The speech-language pathologist (SLP) and the care team closely align the dysphagia plan of care with the overall treatment goals, preferences, and life prognosis. Comprehensive dysphagia management may use a variety of approaches concurrently, including alterations in food and liquid consistency, use of alternative routes for nutrition and hydration, direct swallowing therapy (where appropriate), and other medical interventions.
Certain swallowing disorders have their own specific course of treatment. A myotomy — a surgical procedure during which the esophageal sphincter muscle is cut — is performed to treat many of these conditions.