Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease

Abstract

The advice for early insertion does not outweigh the personal perceptions and psychosocial factors for patients and their carers. Understanding the factors which influence decision-making on an individual basis is important for information and care provision by healthcare professionals in aiding patients, and their carers, to make informed decisions in relation to gastrostomy timing.

The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective

“…As previously reported, the reluctance to give up oral feeding, uncertainty over the disease trajectory, not realising the potential benefits and negative perceptions of gastrostomy were some factors that delayed their gastrostomy decision 20. This paper has presented the accounts of patients with MND, and their informal carers, in relation to their experience following gastrostomy.…”

“…The presented data regarding disease duration, ALSFRS-R score and body mass index at the time of gastrostomy suggest a relatively late decision for gastrostomy placement in this sample. The factors influencing decision making in relation to the timing of gastrostomy in the cohort have been previously reported 20 Table 2. presents the characteristics of use of the gastrostomy tube and a list of adverse incidents experienced by the participants.…”

“…It is therefore important for health professionals to understand these social consequences on the quality of life of patients, monitor for any signs of social isolation and depression and help people to develop effective coping strategies 24. Most patient participants had delayed the gastrostomy decision until they were struggling to swallow, and consequently following gastrostomy they stopped any oral intake attempt 20. The loss of eating was a consequence of MND progression, although participants perceived it to be a consequence of gastrostomy.…”

Enteral feeding in neurological disorders

“…In practice, current clinical decision-making in relation to when is best to offer gastrostomy to patients with motor neurone disease is based less on objective criteria such as falling body mass index and weight loss, but more on patient-reported criteria such as extended, effortful and difficult mealtimes 39. Patients are often understandably reluctant to undergo a gastrostomy insertion52; indeed, this decision may be the most challenging for patients to make over the course of the disease 53. Psychological and psychosocial factors heavily influence their decision;52 54 a key one being whether they are still deriving pleasure from oral intake in the presence of increasing swallowing and eating difficulties 55.…”

“…Patients are often understandably reluctant to undergo a gastrostomy insertion52; indeed, this decision may be the most challenging for patients to make over the course of the disease 53. Psychological and psychosocial factors heavily influence their decision;52 54 a key one being whether they are still deriving pleasure from oral intake in the presence of increasing swallowing and eating difficulties 55. As a result of the psychological factors and uncertainties about the potential benefits of gastrostomy feeding, there is a tendency for gastrostomy insertion to occur at a relatively late stage of the disease 56.…”