'It just changes the complications'

Archives of Internal Medicine recently had a study about the influence of nursing home culture on rates of tube feeding of patients with advanced dementia. This is a qualitative/ethnographic study of two NH in South Carolina, both within the same region, and both selected because one had very high rates of TF of patients with dementia (41%) and one had a low rate (11%) (they note the high one was actually the 4th highest in the region - the other 3 wouldn't participate in the study).

The researchers observed care in the NH (how mealtimes are structured, who does what, etc.) and interviewed multiple providers at each site (nurses, CNAs, speech pathologists, administrators, dieticians, etc.). There were important differences between the two nursing homes: the 'high use' NH had a larger proportion of African Americans (52% vs 9%), Medicaid patients (80% vs. 28%), no dementia unit, and poorer quality indicators (using CMS data). Both NH were part of for-profit chains.

As this is a qualitative study the findings are difficult to summarize, but generally come down to: the low-use facility was nicer, feeding was better staffed with better trained CNAs, and multi-disciplinary shared decision making was common. The article is a thrilling/appalling read as you hear the differences between the two NH:

Both NHs had interdisciplinary teams to identify and respond to residents' weight loss but differed on team composition and family role. The low-use NH team included the dietary technician, SLP, director of nursing, administrator, nurses, activity director, social worker, and on-staff physician. The physician evaluated residents who lost weight and discussed his findings with family. His attitude reflected a preference for hand feeding over tube feeding. He said, "I am subtly negative, or not so subtly. I tell [the family] that [a feeding tube] has no effect on mortality. It just changes the complications." The social worker also facilitated family meetings to determine how the options of hand feeding vs tube feeding aligned with the goals of care.

The high-use NH team was composed of the dietary technician, SLP, and nurses. Nurses were responsible for notifying PCPs of weight loss, obtaining orders for nutritional supplements, and notifying families about feeding problems. The social worker denied having a role in feeding decisions. An NP reported that by the time she was consulted, "department heads" had already approached families to suggest tube feeding. The NP found it nearly impossible to "undo" family beliefs that feeding tubes were in residents' best interests. The NP reported that dehydrated residents were often admitted to the hospital and returned with feeding tubes.

Most of the paper is along these lines. As I started reading this, and saw the differences in demographics between the NH my initial response to this was that given the well-described increased use of FT in African Americans with dementia that their findings would be impossible to interpret beyond that (ie how do you say the differences they see cause the differences in FT rates as AA patients prefer and receive FT more often than white Americans). Instead I came away with more of a sense that the differences they describe could in part be the cause of the significant disparity in FT rates in different cultural groups in the US - particularly that poverty, and reliance on marginally financed safety net institutions with fewer staff with less training and an institutional culture of disengagement about these issues (as opposed to patient-centered engagement with, for instance, family meetings) drives the disparities. It's this abandonment of discussion and patient-centered decision-making that is what is most disheartening about the study, at least to me. Assessing values, discussing all options - getting 'true' informed consent - etc. just seemed to be absent from the high-use home.