European Journal of Nutrition & Food Safety

Background: American and European guidelines recommend use of early gastrostomy feeding in MND/Amyotrophic Lateral Sclerosis (ALS) patients with dysphagia Anderson et al. [1], Miller et al. [2], despite limited evidence Katzberg and Benatar [3]. Some sufferers, however, may delay their decision, when the procedure is riskier.
The aim of this qualitative study was to explore the factors that influence the decisions on whether patients with MND choose to have a feeding gastrostomy. This will enable a better understanding about why patients refuse and/or delay their decision.
Methods: A Qualitative research design was undertaken, using semi structured face to face interviews as a data collection method. Using purposive sampling, seven participants who had previously been advised to consider a feeding gastrostomy, were recruited from a MND Care Centre. All interviews were audio-taped, transcribed and analysed using Thematic Analysis. Ethical approval was granted from the East Midlands research ethics committee
Results: The main source of information about feeding gastrostomies was from the Care Centre, with participants finding little need to search elsewhere. Despite satisfaction, there were gaps, such as other options, burdens and post management. Participants were able to make their own decision about whether to have the treatment; however, in reality they felt that there was little choice. In addition, there seemed to be limited involvement with the carers. Influencing factors included the beliefs that the treatment was life prolonging and the degree of their symptoms. Technical factors, such as appearance and maintenance of the tube were also considered. Participants were generally positive about the tube.
Discussion: This study gives a valuable insight in the decision making experiences of those with MND when choosing feeding gastrostomies as a treatment. Research in this area is limited in the literature, particularly in this patient group, despite there being a recognised need. The participants reported a planned approach to the feeding gastrostomy as a treatment and were at the centre of the decision making process. Whilst there was strong evidence of autonomous decision making, there appeared to be limited involvement of family members and no obvious appreciation of the potential future impact on them. The participants generally felt that the timing of gastrostomy insertion was right for them and in some cases; participants reported milestones in their disease they needed to reach before acceptance of the tube. This is similar to the finding by Hogden et al. [4], who found that some participants had a ‘wait and see’ approach. Despite having autonomous decision making, many felt that in reality they had little choice, reporting that having it would prolong their life. This suggests that participants may have had unrealistic expectations of the treatment.
Conclusion: There needs to be consideration of what information is important to those with MND and discussion of the wider implications of having the tube as well as discussing the expectations of the treatment and the potential burdens following insertion. Consideration also needs to be made on the impact on the carers and clinicians need to help facilitate this discussion.