Rural-urban differences in end-of-life care: the use of feeding tubes.

Efforts to improve end-of-life care have increased during the past decade. The goals of these efforts include increasing patient autonomy and reducing or more selectively using intensive medical interventions near the end of life. In this light, examination of community-to-community variations in end-of-life practices may serve to clarify the values and goals of different populations, as well as the roles of patients, families and professionals in bringing about specific patterns of medical care. This study examined the use of feeding tubes among Kansas nursing home residents between Jan. 1, 1994, and June 30, 1998 (n = 78,895), using the Minimum Data Set. Residents with very severe, persistent and irreversible cognitive impairment (n = 4,847) were included in the study population. The location of nursing homes in urban, midsize and rural counties was an independent variable. Feeding tubes were used in 19.3 percent of the urban nursing home residents, 8.0 percent of the residents in midsize counties and 6.4 percent of the rural residents. The rate of feeding tube use was significantly higher in urban counties for most subpopulations, including men, women, whites, nonwhites, and those eligible and ineligible for Medicaid. The observed rural-urban differences in feeding tube use near the end of life may be associated with differences in access to surgical or nursing services, differences in the relationships between providers and consumers of care in different communities or differences in rural and urban cultures. Qualitative research may be useful in clarifying the roles of each of these factors.

Ethnicity and end-of-life care: the use of feeding tubes.

BACKGROUND: Blacks utilize many health care services at lower rates than do Whites. However, in end-of-life care, the situation is frequently reversed, with Blacks using life-sustaining interventions at higher rates than do Whites. We investigated the use of feeding tubes in very severely cognitively impaired nursing-home residents, and examined the findings in light of previous studies on the role of ethnicity in end-of-life decision making. DESIGN AND METHODS: We performed a descriptive, cross-sectional population-based study of residents in Kansas nursing homes from January 1994 through June 1998, using Minimum Data Set reports. A total of 4,920 nursing home residents (4,691 White and 229 Black) with very severe and irreversible cognitive impairment comprised the study population. Factors associated with tube use were examined using bivariate and logistic regression tests. RESULTS: Feeding tube use was strongly associated with swallowing difficulties, Black race, urban location of nursing home, stroke, and absence of dementia in multivariate analysis. Feeding tubes were used in 10.1% of White subjects and in 38.9% of Black subjects for an overall rate of 11.5%. Feeding tube use was greater (P<.001) among Black subjects in all demographic and clinical sub-populations examined. CONCLUSIONS: Feeding tube use is significantly more common in Blacks than in Whites. These findings are consistent with published studies of Black-White differences in preferences for medical treatment at the end of life. Future research efforts should examine end-of-life decision making processes directly. Qualitative methods may be useful in generating new hypotheses regarding the role of ethnicity in these decisions.

Tube feeding in nursing home residents with severe and irreversible cognitive impairment.

OBJECTIVES: This study was undertaken to determine the degree to which selected demographic and clinical variables are associated with the use of feeding tubes in older nursing home residents with very severe and irreversible cognitive impairment. DESIGN: Descriptive, cross-sectional, population-based study. SETTING: Kansas nursing homes from January 1, 1994, through June 30, 1998. PARTICIPANTS: A total of 4,997 nursing home residents with very severe and irreversible cognitive impairment comprised the study population. Subjects were identified using data in Minimum Data Set (MDS) reports. Those who were included in the study population were over the age of 65, had two consecutive Cognitive Performance Scale scores of 6, were without evidence of significant subsequent improvement, and were not comatose. MEASUREMENTS: The MDS data on each resident were examined to determine subjects' age, ethnicity, gender, Medicaid eligibility, disease diagnoses, physical functioning, and oral/nutritional status, including feeding tube status. The MDS was also used to determine urban versus rural location of the nursing home. The association between the use of feeding tubes and selected demographic and clinical characteristics was then examined using bivariate and logistic regression tests. RESULTS: Of the 4,997 residents in the study population, 577 (11.6%) had feeding tubes. In multivariate analysis, feeding tube use was found to be associated with swallowing problems (odds ratio (OR) 5.4, 95% confidence interval (CI) 4.3-6.8); urban location of nursing home (OR 2.9, 95% CI 2.3-3.5); non-white race (OR 2.7, 95% CI 1.9-3.6); stroke (OR 2.5, 95% CI 2.0-3.1); and absence of dementia (OR 2.5, 95% CI 2.0-3.1). Feeding tubes were also more weakly associated with age <86 years, male gender, dependency for all activities of daily living, and absence of a living will. Feeding tube use was not found to be associated with chewing problems, Medicaid status, or resuscitation status. CONCLUSIONS: Clinical variables including swallowing problems, stroke, and absence of dementia were strongly associated with the use of feeding tubes in this cross-sectional, population-based study. In addition, urban location of nursing home and non-white race were significantly associated with feeding tubes. These findings suggest that feeding tube decisions are strongly influenced by nonclinical factors and invite further investigation.

Planning end-of-life care for patients with dementia: roles of families and health professionals.

We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in 'normalizing' the discussion of death.

Haemophilus influenzae type b in a day care center: relationship of nasopharyngeal carriage to development of anticapsular antibody.

We measured anticapsular antibody to Haemophilus influenzae type b by radioimmunoassay in sera from 55 children attending a day care center in which two cases of H influenzae type b disease had occurred. The children ranged in age from 2 months to 36 months. Serum antibody levels in children attending the day care center were significantly higher than in age-matched controls (P less than .001), but in two different surveys one month apart 38% and 43% of the contacts had levels less than 100 ng/ml. Day care center children who were carriers of H influenzae type b had higher geometric mean antibody levels than noncarriers (478 ng/ml compared to 92 ng/ml, P less than .004). Nevertheless, six of 21 children (29%) with repeatedly positive cultures during four weeks of observation had concentrations of serum antibody less than 100 ng/ml when measured both by binding the 125I-derivative of the capsular antigen (polyribosyl-ribitol phosphate), or binding of 3H-polyribosyl-ribitol phosphate. These data may explain observations of H influenzae type b disease in contacts of cases more than 30 days after hospitalization of the index patient.