This week on the blog, we are highlighting Jeannette Pols and Sarah Limburg’s article “A Matter of Taste? Quality of Life in Day-to-Day Living with ALS and a Feeding Tube.” The article is open-access and can be read in full here on our publisher’s website.
The authors begin by suggesting that while “quality of life” has been transformed into a measurement used widely in health research, it is difficult to operationalize when considering the daily, lived experiences of patients. Rather than approaching quality of life as a measure of attainment or “outcome,” the authors instead choose to reframe it as a continual process: one that is negotiated by individual patients differently. To examine what quality of life entails in a qualitative sense, the authors interviewed a population of people with ALS in the Netherlands with feeding tubes, or ALS patients considering one.
The literature on feeding tubes, the authors note, present many perspectives on the relationships between quality of life and eating. Some sources argue that feeding tubes deprive individuals of the important social aspects of eating, while others note that feeding tubes can unburden patients for whom swallowing and the physical actions of eating are difficult, uncomfortable, or impossible.
Patients and their families interviewed by the researchers, on the other hand, demonstrate such ambiguity towards feeding tubes contextually, depending on the stage of their feeding tube transition. For many, the initial decision to have a feeding tube placed in their bodies was an upsetting signal of bodily deterioration. The procedure itself, though technically minimally invasive, was also viewed with trepidation by patients. They worried about the hospital stay, and whether or not their body would be strong enough to adapt to the tube quickly. Pols and Limburg found that for those who had undergone the procedure, “there was a remarkable consensus among patients in their evaluation of tube placement, with the main variations mentioning just how terrible it had been.” The authors later note that some patients continued to view the feeding tube negatively after it was placed, envisioning it as an unnatural, upsetting addition to their bodies. Others described it as a “necessity” that came with quality of life benefits, although it was not pleasant to have attached to their bodies.
However, for many patients who had feeding tubes already implanted at the time of the study, the response could be notably positive. These participants noted that the devices restored their health and function, and lessened distressing symptoms like choking and an inability to swallow. For one patient, the feeding tube ensured that she received the appropriate calories, such that any food she decided to eat normally could be at her discretion. Other patients who cared less about eating a range of foods appreciated that the feeding tube rid them of the need to worry about what could be easily consumed.
The authors conclude that “the feeding tube can best be understood not as an intervention that causes ‘impacts on quality of life’, but as a technology or prosthesis that may bring different qualities and appreciations that may shift over time.” They add that the feeding tube acts as an intervention that re-orders daily life for patients coping with the a ‘new normal’ of chronic illness: rather than serving to balance “good” and “bad” qualities, as outlined in the disability paradox. Lastly, they remind readers that instrumentalizing “quality of life” risks losing these facets of illness experience. This term is deeply contextual, and responsive to the needs, expectations, and hopes of each patient undergoing treatments or coping with chronic conditions.