Gastrostomies in dementia: bad practice or bad evidence?

Tube feeding in dementia remains controversial as evidenced by recent responses to the Royal College of Physicians (RCP) report on oral feeding [1]. Criticisms of non-oral feeding are based on a failure to show a favourable outcome [2] or to lengthen survival [3, 4], a worsening of prognosis [5] and a higher mortality rate in hospitalised patients [6]. When dysphagia become severe, nasogastric tubes are often the first recommendation [1], with gastrostomies inserted once the patient is well enough to tolerate the procedure. However, there are many unanswered questions about tube feeding in general and gastrostomies in particular with respect to dementia: (i) What causes weight loss in dementia? The cytokinemediated cachexia syndrome is well recognised in cancer, chronic infection and cardiac disease, but is not seen in dementia. Weight loss in dementia is not an inherent part of the disease process but due to insufficient nutritional intake for the individual’s metabolic needs [7]. (ii) Is dysphagia a terminal symptom? In Alzheimer’s dementia, dysphagia can occur early in the disease process [8] and is not always a terminal symptom as is often believed [1]. Dysphagia often presents at an advanced stage having been missed because of poor screening [9], atypical presentations (e.g. in people with Down’s syndrome) and carer adjustment to its presence. There is little research exploring the extent of dysphagia in early to mid-stage dementia [10, 11], and until this is done a blanket ‘no gastrostomy’ policy cannot be justified. (iii) Are gastrostomies inserted too late? Delay in identifying dysphagia risks malnutrition. Patients with low albumin levels do worse than those with normal levels post-gastrostomy and the risk of pneumonia due to severe dysphagia is increased [12, 13]. (iv) Is survival a relevant outcome measure? The evidence on survival is unclear varying from no effect on survival [16], a post-gastrostomy median survival of 6 months [14], and both increased [15] and reduced survival [13] with nasogastric feeding. A failure to improve survival has often been the central argument against tube feeding in dementia [1]. This observation suggests that tube feeding does not increase the risk of unnecessarily prolonging a patient’s life and is a point in favour of tube feeding. (v) Are refeeding syndrome or gastric stasis being recognised? Refeeding syndrome results in severe electrolyte imbalances and a risk of death [17, 18]. Gastric stasis is common in patients with malnutrition and advanced disease, but is often overlooked in people with impaired cognition and increases the risk of aspiration if a standard feed rate is used. There is no mention of these problems in the gastrostomy– dementia literature. (vi) What method of tube feeding is being assessed? It has been noted [14] that some papers do not specify whether gastrostomies or nasogastric tubes are being assessed [3, 19]. The paper by Mitchell et al. [3] describes ‘feeding tube placement’ without specifying the type, and yet the recent RCP report [1] quotes this source as applying to gastrostomy feeding. (vii) Are the most appropriate outcomes being assessed? We lack data on outcomes more relevant to palliative care: Eating for survival or eating for pleasure: the shift from struggling to eat for survival to eating for pleasure with supplementary feeding via gastrostomy can be achieved gradually according to the patient’s swallowing ability and wishes. Gastrostomy feeding does not have to mean the end of enjoyable eating. Patient distress: a tool to document distress in people with severe communication difficulties such as dementia [20–22] allows us to better understand the distress caused by prolonged oral meals, repeated admissions for pneumonia and fatigue caused by malnutrition. Symptoms of malnutrition: taste changes, anorexia, fatigue, poor wound healing, susceptibility to infections and gastric stasis due to autonomic insufficiency are rarely mentioned in the gastrostomy–dementia literature. Reducing hospital admissions: infections can be managed in the patient’s own setting because antibiotics can be administered via the gastrostomy rather than requiring intravenous routes. Administration of medications: the gastrostomy allows patients to continue drugs such as anticonvulsants independent of oral feeding ability. Distressing mealtimes: we strongly support enabling patients to maximise their oral intake. However, the insistence of ‘oral only’ results in prolonged mealtimes of an hour or more to ensure adequate intake, begging the question of whether anyone benefits from this process. Exhaustion and distress caused by prolonged mealtimes have not been studied, and there seems to be no consideration of the stress felt by staff concerned about worsening or precipitating aspiration-related problems.