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Long-term Care/Access to Care

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Most nursing home residents prefer life-sustaining treatments, but do not discuss this topic with caregivers

The majority of nursing home residents who are capable of making decisions prefer life-sustaining treatments in the event of sudden cardiac arrest or other life-threatening event. However, the types of treatments they prefer vary considerably, according to a random survey of 421 residents of 49 nursing homes that was led by Linda A. O'Brien, R.N., M.A., and Jeane Ann Grisso, M.D., M.Sc., of the University of Pennsylvania School of Medicine.

In a study supported in part by the Agency for Health Care Policy and Research (HS06815), the researchers found that only 12 percent of residents had discussed preferences with health care providers, although 31 percent had discussed their preferences with family members. Overall, 60 percent of nursing home residents preferred the use of cardiopulmonary resuscitation (CPR) in the event of sudden cardiac arrest, and 89 percent would choose hospitalization if seriously ill. Of those preferring hospitalization, 73 percent wanted to be hospitalized in the event of permanent brain damage, and 33 percent elected enteral tube feedings if they were unable to eat because of permanent brain damage.

Residents who preferred CPR were more likely to be black, physically mobile, believe that most important medical care decisions should be made by the doctor, have moderate to severe impairment in daily decisionmaking skills, and not have a spouse. Patients who believed their doctors should make important medical care decisions were nearly five times as likely as others to choose hospitalization for serious illness. Black residents were four times as likely to elect tube feedings as other residents. The researchers speculate that black patients may feel disenfranchised from the health care system and, therefore, prefer to err on the side of overtreatment rather than undertreatment.

Details are in "Nursing-home residents' preferences for life-sustaining treatments," by Linda A. O'Brien, R.N., M.A., Dr. Grisso, Greg Maislin, M.S., M.A., and others, in the December 13, 1995, Journal of the American Medical Association 274(22), pp. 1775-1779.

Many poor families do not take advantage of free health care services

Making health services free is not enough to ensure that poor families will use them, according to a study supported by the Agency for Health Care Policy and Research (HS06507). It shows that only one-third of eligible poor children in North Carolina received health checkups and immunizations offered by Medicaid's Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program. Many low-income parents, particularly single parents, were often coping with difficult life situations that often took priority over these checkups. Also, they had difficulty getting time off work or care for other children in order to make appointments at clinics, where appointment times and staff are limited due to budget constraints.

Families might be more likely to use these preventive health services if State agencies informed them about the program's tangible benefits, such as eyeglasses, medicine, and immunization reports required for school or day care. Also, expanding clinic hours, increasing availability of providers and locations, improving the EPSDT transportation system, and improving outreach materials used to inform parents about the program might motivate individuals to use the program, suggests Maija Selby-Harrington, Dr.P.H., R.N., of the University of North Carolina at Greensboro, the study's lead investigator.

Parents in this study often had difficulty locating providers who participated in the EPSDT program, and many had problems getting appointments within a reasonable time. Some parents encountered long waiting-room delays (43 minutes on average) and perceived a lack of respect on the part of staff, which led the parents to question the quality of care they received. Even program-provided minibus transport and mileage reimbursement were not sufficient to overcome transportation barriers for some families.

In the study, low-income parents in six rural North Carolina counties whose children were overdue for an EPSDT visit were provided with information about the program (either mailed pamphlet and letter, phone call and mailed pamphlet, or home visit with pamphlet). Public health nurses then interviewed the parents about their reasons for use or nonuse of the EPSDT program. Of the 110 parents who did not use these services, 55 percent cited family and personal issues that competed with the need for preventive health care; 25 percent cited competing health concerns. Perceived or actual barriers in the health care system discouraged 24 percent of parents who tried but were unable to use the system. About 32 percent of parents indicated that the specific type of outreach method had failed either to reach them or convey the needed information.

See "Barriers to the use of preventive health care services for children," by Roberta Riportella-Muller, Ph.D., Dr. Selby-Harrington, Lenora A. Richardson, D.S.N., R.N., and others, in the January/February 1996 Public Health Reports 111, pp. 71-77.

Some older Mexican Americans may not ask family members for the help they need to avoid a nursing home stay

A recent study, supported in part by the Agency for Health Care Policy and Research (HS07397), suggests that older Mexican Americans may not make use of family support when they become ill, despite the fact that many Mexican Americans reside in multigenerational households. This may be because relationships between elderly Mexican Americans and their families tend to be reciprocal, including exchanges of goods and services, financial assistance, moral/emotional support, and advice-giving. Participants in this study may have been reluctant to ask for help because they were concerned it would undermine their ability to maintain these ongoing reciprocal exchanges, suggest researchers at the AHCPR-supported Mexican-American Medical Effectiveness Research Center in San Antonio, TX.

Almost 30 percent of older Mexican Americans of lower and middle socioeconomic status (SES) in this study perceived that they would have no available caregiver should they become ill and need long-term help. Individuals with chronic illnesses—who are at greatest risk of nursing home admission in the absence of a caregiver—were the least likely to believe a caregiver would be available to them. The researchers used home or phone interviews to examine differences in perceived availability of long-term caregivers among 649 lower, middle, and upper SES Mexican Americans and non-Hispanic white persons 58-74 years of age in San Antonio, TX.

For Mexican Americans across all three SES groups, women, widows, and those with chronic illnesses were more likely to believe there would be no one to care for them. Almost twice as many low-SES versus upper-SES Mexican Americans perceived that they would have no available caregiver (30 vs. 17 percent). Nearly all of the participants had at least one living first-degree relative other than a spouse, and many had three or more first-degree relatives other than a spouse.

See "SES and ethnic differences in perceived caregiver availability among young-old Mexican Americans and non-Hispanic whites," by Melissa A. Talamantes, M.S., John Cornell, Ph.D., David V. Espino, M.D., and others, in The Gerontologist 36(1), pp. 88-99, 1996.

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