Friday, August 15, 2008

Caring and tube-feeding

The Journal of the American Medical Directors Association has a paper discussing tube feeding in advanced dementia, and why the practice still continues despite lack of evidence that it is medically helpful. The discussion is really about the nature of caring, what it means for families to care for a beloved family member with dementia, and how tube feeding interacts with that. This is one of the best discussions of the emotional landscape of the issue that I've read, and the crux of their argument is as follows:

But perhaps one overlooked reason that many loving families and caring physicians continue to opt for artificial nutrition is that the case for feeding tubes is a moral one and not a scientific one. Clinical experience suggests that family members who express concern about “starving” their relatives to death may not be asking for more data. They may not be interested in the relative merits of randomized versus observational studies. They are unlikely to be persuaded by claims that feeding tubes not only fail to prolong life but also are ineffective in preventing aspiration pneumonia or pressure ulcers. These medical outcomes, which can be scientifically measured, are of interest to physicians; it is not at all clear that they are important to families. From this perspective, families will derive little reassurance from a new, better designed study or a multipronged intervention that simultaneously addresses each of the factors that has a small but statistically significant effect on PEG usage. What may be at issue for families is how best to demonstrate caring, and caring is not readily amenable to empirical study.
Another great line: "Moreover, if a carefully conducted study definitively demonstrated that hugging has no effect on the immune system, no daughter would stop hugging her demented mother."

This reality, of course, does not provide a 'way out,' and the authors suggest the only ways out would be well-designed studies showing harm from tube feeding patients with severe dementia and dysphagia and/or poor oral intake, or another way of showing caring with nutrition (they mention Ensure lollipops - I wasn't sure if this was some sort of joke but I'm assuming it wasn't - does anyone know of work being done on such a thing?). Diligent hand-feeding is of course perfectly within the framework of 'caring with nutrition' here, and the authors discuss that as well as some of the barriers to that being used/proposed more.

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