presents general NH characteristics. Both NHs had comparable numbers of beds, were for-profit, and were part of a chain. The high-use NH had a higher mix of Medicaid recipients, more African American residents, and did not have a dementia unit. The ratio of RNs to residents was lower in the high-use NH, but the level of CNA support was similar. Both facilities had an SLP on staff. Finally, the high-use NH had poorer overall quality, a lower score on the Observable Indicators of Nursing Home Care Quality Instrument, fewer stars on the CMS 5-Star Quality Rating System, more patients with pressure ulcers, and more deficiencies found on state inspection.
Characteristics of 1 Nursing Home With a High Rate of Tube-Feeding in Patients With Advanced Dementia and 1 With a Low Rate
In both facilities, administrative staff, licensed nursing staff, and PCPs were white with the exception of 1 African American nurse (an LPN). All CNAs who participated in interviews were African American.
Newly available MDS data from 2006 and 2007 confirmed that the tube-feeding rates in the 2 NHs remained similar to 2001 data used for facility selection. In 2007, the high-use NH had 29 residents with a CPS score higher than 5, of whom 10 were tube fed (tube-feeding rate, 34.5%). The low-use NH had 27 residents with a CPS score higher than 5, of whom only 4 were tube fed (tube-feeding rate, 14.8%). These rates were similar in 2006 ().
The general atmosphere in the low-use NH was homelike and richly decorated. Residents were observed ambulating and engaging in social exchanges with staff and visitors. The dining room was centrally located. Hot beverages were available in the reception area, residents frequented the ice cream parlor, and there were activities involving food, such as a homemade soup contest and an outdoor barbecue. Conversely, the general atmosphere in the high-use NH was devoid of décor and had a pervasive unpleasant odor. Residents were in bed or wheelchairs for most of the day. Little social exchange occurred between NH staff and residents. The dining room was annexed to the main building, and 1 small room on each nursing unit was used as a dining room for residents needing assistance. Food appeared only during scheduled mealtimes.
In the low-use NH, 7 meals were observed and 6 CNAs were interviewed. Mealtimes were well staffed. Each CNA was responsible for feeding 3 or 4 residents. Visitors assisted with meals, and nurses supervised and fed residents. Most residents ate in dining rooms and were transferred to dining chairs. Interviews with CNAs revealed that they were informed about feeding residents with dementia and described several feeding challenges, including problems swallowing, chewing, aspirating, accepting food, and maintaining alertness. In response to these behaviors, CNAs identified several strategies: coming back later, taking extra time, maintaining eye contact, and verbally encouraging residents. Staff provided physical assistance and social and verbal cues.
In the high-use NH, 6 meals were observed, and 5 CNAs were interviewed. Mealtimes were not well staffed. Visitors and nurses were not present during meals. Each CNA was responsible for feeding 6 to 8 residents. During 1 observation, 2 CNAs assisted 16 residents in a small dining room. One CNA abruptly left to feed residents elsewhere, leaving many residents without further assistance. During the evening shift, only 3 CNAs were available to feed 20 residents. One nurse said, “It pretty much is shove it in, get out, and move on.” Few residents attended the main dinning room. Many residents were placed in bed after lunch and remained there until the following morning. Residents in wheelchairs were not transferred to dining chairs. The CNAs were not well informed about feeding residents with dementia. When asked about challenges they faced, CNAs reported that residents hit, spit, would not open their mouths, and took a long time to eat. The only strategy identified was reporting the problem to the charge nurse. The CNAs did not provide verbal or social cues during meals.
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.
In material distributed by the low-use NH, the mission was to create a “community” of support and to serve each person with “compassion, dignity, purpose, and respect.” Residents were considered “family members” who were “entrusted” to the home to create “healing” and “peace of mind.” The mission statement emphasized individualized treatment plans with health professionals and family working together to help residents “thrive.”
The high-use NH’s mission was to “minimize recovery time,” “provide quality care,” and “obtain positive outcomes.” The NH staff were considered “partners” and their goal was “progression through health care services” toward the ultimate goal of “stabilization and recovery.”
The low-use NH implicitly valued care that was consistent with families’ preferences and hand feeding residents. If family were “willing to take the risk,” staff were willing to hand feed residents, despite the possibility of aspiration. The SLP took an active role in educating and supporting nursing staff and described a situation with a 93-year-old resident with advanced cognitive impairment. She said,
The family knows that she isn’t safe [from aspiration], and nursing knows that she’s not safe, the physician knows that she’s not safe, but [family] wish for us to continue to attempt to feed her as safely as possible just because if you don’t, you’re actively starving that patient. The only alternative is a tube and at 93, her family doesn’t want her to have a tube.
Administrative staff in the low-use NH were not apprehensive about meeting regulations concerning weight loss. Given multiple strategies to maintain weight, meticulous documentation, and family involvement, administrative staff felt that records were adequate to support continued hand feeding despite significant weight loss.
In the high-use NH, there was an implicit assumption that families preferred not be involved in residents’ care and that African American families preferred aggressive end-of-life care, including tube feeding. When the research team asked to interview families, the social worker responded, “Good luck finding them.” Some staff members did not value hand feeding. One nurse likened feeding residents with dementia to feeding a “puppy with an automatic feeder.” A CNA said that in patients with dementia, “eating isn’t important anymore.” Some nurses feared that residents with advanced dementia might aspirate during meals and preferred to tube feed such residents. Finally, feeding tubes were implicitly valued as a means of adhering to state regulations concerning weight loss. The director of nursing reported that feeding tubes were inserted “pretty quick” because of “stiff regulations that did not permit a look at the whole picture.” An NP agreed, saying, “I think a large part of it is fear [of regulatory agency] by [NH] administration to act on weight loss. This drives the feeding tube conversations as well.”