Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study

Although studies demonstrate the range of impacts of home enteral feeding (HEF) on patients' lives, a dearth of evidence focussing on the decision to have a gastrostomy placed exists. The importance of taking account of patient values (i.e. their unique preferences, concerns and expectations) when considering the consequences of clinical decisions is increasingly recognised. This study explores patient's views on the role of their values in their decision to have a gastrostomy.

Using a qualitative approach and concurrent data collection and analysis, a convenience sample of 11 patients receiving HEF participated in one semi-structured interview in their own home. Participants were asked to i) consider the impact of HEF on their lives and ii) how this information could have been used in their decision making to have a gastrostomy. Interviews were transcribed verbatim and key themes were developed through inductive thematic analysis using NVivo 10 to manage the data.

Three key themes were identified: 1. Weighing up the benefits and concerns: a positive health outcome outweighed concerns about HEF. However, being asked to explicitly consider what individuals consider to be excessive information about the impact of HEF may increase anxiety; 2. Perceptions of choice: most patients felt they were either not given a choice or that they did not have a choice as there was not a viable alternative to HEF. 3. Expectations and regret: considering values may have helped manage expectations of HEF, although the decision to place a gastrostomy was usually not regretted.

Taking account of individual values may enable better tailoring of decision-making. How patient values are clarified during decision making processes requires further study in relation to the varied indications for gastrostomy and the time available for decision making.