Patient perceptions of clinical decision making for percutaneous endoscopic gastrostomy placement
Authors: Brotherton A.M. , Abbott J. 
Published: July 2008

Background:  Government health care policy encourages service providers to involve service users in decisions regarding their care. It is generally accepted that patients should be provided with sufficient and appropriate information to enable them to make informed decisions. The aim of this study was to explore patients’ perceptions of the adequacy of the information provided and their subsequent involvement in the decision making process for percutaneous endoscopic gastrostomy (PEG) insertion.

Methods:  The study was a cross‐sectional qualitative design using semi‐structured interviews and purposive sampling to ensure the inclusion of adults with a range of diagnoses. The interviews were tape recorded and following each interview comprehensive field notes were made which described any significant events or emotions that had occurred during the interview. These included issues such as reflective thoughts and perceptions of the participants during the interview process. The interviews were then transcribed verbatim. Thematic analysis was selected for data analysis. The analysis followed three main processes; data reduction, data display and data complication (Miles & Huberman, 1994). Ethical approval was obtained from the local research ethics committee.

Results:  Sixteen patient interviews were undertaken. Eleven of the patients reported they had no involvement at all in the decision making process and ten of these perceived the information they had received prior to PEG insertion to be inadequate. Only four patients had found the information useful. The key theme that emerged from the data was ‘exclusion’ as patients explained how they felt they had no choice in the decisions taken, for example, ‘I had no choice, the doctors made the decision’. Patients described how they found the attitudes of many healthcare professionals to be paternalistic and prescriptive in how they had made the recommendation for PEG placement. In addition, some patients described a total lack of information,‘I received no information at all, everyone was so blasé about it, except me’ whilst others described being well informed of the procedure for the PEG placement but having no information regardingthe practicalities and organisation of feeding, especially the requirements ofthe feeding regimen,’ I was told what it was for, but I only found out the important things much later, like how many hours every day I would spend feeding and how I would get the feed and giving sets’.

Discussion:  This qualitative study demonstrates a clear need to address the barriers to the provision of adequate and appropriate information to enable patients to make an informed decision. Improved communication is crucial to improve the patients perceived level of involvement in clinical decision making processes.

Conclusions:  The development of decision making models which support interdisciplinary and participative approaches to decision making are required.

Reference  Miles, M.B. & Huberman, A.M. (1994) Qualitative Data Analysis, 2nd edn. Thousand Oaks, CA: Sage Publications.