Care of Persons With AIDS in the Nursing Home

436 June 1998 Family Medicine Clinical Research and Methods Care of Persons With AIDS in the Nursing Home John Michael Heath, MD Background: AIDS is becoming a chronic illness for some patients whose significant accumulated functional impairments may limit community-based care. Nursing homes can provide an appropriate level of care, although reported experience caring for persons with AIDS in this setting is limited. Methods: A retrospective case-series review was conducted in a 242-bed community teaching nursing home to describe the initial 26-month experience in providing care for patients with AIDS requiring nursing home admission. Results: A total of 42 admissions by 32 patients with AIDS (mean age=33.5years, 81% male) involved a shorter length of stay (mean 63.1 days) and higher numbers of medications (mean=11.2), facility charges (mean $11,971/admission, $189/ day), and greater clinical management complexity than usual nursing home patients. Thirteen patients were discharged, seven for rehospitalization and six into community settings, although ultimately 29 of the 32 patients died in the facility. Conclusions: AIDS care in the nursing home presents significant, distinct challenges in complex management and terminal care prioritization. (Fam Med 1998;30(6):436-40.) Acquired Immunodeficiency Syndrome (AIDS) is a leading cause of mortality of younger adults. While the disease incidence has appeared to stabilize, the prevalence of AIDS in the United States has increased by 65% over 3 years. 1 This is because improved management with antiretroviral agents, protease inhibitors, and prophylactic therapies against opportunitistic infections has reduced short-term mortality. This has resulted in many persons with AIDS now living longer, only to develop more chronic conditions, such as dementing encephalopathies, severe peripheral neuropathies, and other debilitating states associated with significant functional impairment. Long-term care settings such as nursing homes can play an important role in the care of such persons with AIDS. 2 Factors cited as favoring greater nursing home use for patients with AIDS include longer patient survival, more patients whose intravenous drug usage has limited alternate living arrangements, economic incentives to seek alternatives to expensive acute care hospital setting, and greater hospice use. 3 From the Department of Family Medicine, University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School, New Brunswick. Published information about nursing home care for patients with AIDS is limited. 4,5 A national survey in 1992 of 517 skilled nursing facilities reported that only 3.6% provided AIDS care, 6 while an assessment of nursing homes in and around Cook County, Ill, published in 1993, could not identify any facility that had completed an admission of an identified patient with AIDS. 7 A more recent survey of Connecticut nursing homes identified 29 of 182 facilities as caring for persons with AIDS. 8 The nature of the care provided in the nursing home setting for patients with AIDS and its effect on educational training has not been previously described. This report details one long-term care facility s initial 26-month experience with an AIDS admission program. Plaza Health Center is an urban, 242-bed community-based skilled teaching nursing home in central New York with a tradition of providing rehabilitative and long-term care services. The facility serves as a training site for second- and third-year family practice residents from the SUNY Health Science Center at Syracuse-St Joseph s Hospital Health Center Family Practice Residency Training Program. In response to a funded initiative from the New York State Department of Health soliciting nursing home participation in HIV care, 9 the nursing home administrator sought to develop an admission program for patients

Clinical Research and Methods Vol. 30, No. 6 437 with AIDS who required skilled nursing home care. Table 1 shows the key tasks involved with developing this admission program, the involved nursing home personnel, and participating community organizations. Over an 18-month preparation period, a series of six mandatory inservice training sessions were conducted for both the clinical and nonclinical staff. Sessions were developed based on published guidelines 10 and focused on HIV disease transmission and infection, illness course, patient confidentiality and privacy requirements, and common care needs. Specific meetings were designated for open discussion of common misconceptions and prejudices about persons with AIDS and the means by which the HIV virus is and is not spread. Sessions were from local hospitals jointly led by an in-service training nurse from the nursing home and a representative from a community organization partner, such as the AIDS Community Resource, a regional patient advocacy volunteer organization. Following completion of staff training, patient admissions were begun using a scatter-bed distribution throughout the facility. The distribution method called for up to eight patients with AIDS to be cared for at any one time, with no more than two on a given floor. The medical care for the patients with AIDS admitted through this initiative was integrated into the facility s overall physician coverage structure. Two general internists and two family physicians cared for all nursing home patients on a geographic assignment basis. The family physicians also supervised family practice residents assigned to longitudinal patient care duties for selected patients on their patient care floors. Third-year family practice residents worked with the facility s medical director for 3 half days a week on site at the nursing home during month-long geriatric rotations. These residents spent part of their rotation assisting the medical director with acute clinical problem management throughout the facility, gaining additional exposure to those patients with AIDS not on the teaching floors. Residents also attended weekly interdisciplinary care conferences to discuss care of patients in the nursing home (both those with and without HIV infection) that involved the patient s relatives or partners when available; nursing staff; representatives from dietary, rehabilitative services, and pastoral care; Table 1 Participants in Planning the Nursing Home Initiative Individual/Organization Nursing home administrator Nursing home director of nursing Nursing home medical director Nursing home in-service training Nursing home medical records Nursing home infection control AIDS community resources Regional hospice organization Infection control officers Acute Care Hospital Acute Care Hospital Role/Assignments Overall project coordination, leadership Oversight of nursing clinical management, staff support Oversight of physician clinical management, medical education Collating and presenting educational sessions, assessing training needs Developing and monitoring patient confidentiality procedures compliance Monitoring implementation of established infection control policies Patient counseling, discharge planning, nursing home staff training and support Nursing home staff training and support, financial management in selected cases Clinical management consultation, nursing home staff training Figure 1 Flow of Patient Admissions Between Levels of Care 42 AIDS 34 Admissions 5 3 Nursing Home 29 7 6 Death 3 Community Care Settings Community Care Settings

438 June 1998 Family Medicine Table 2 Patient Characteristics Overall Study Patient Population Nursing Home of Persons With AIDS Population (n=42) (n=242) Age Mean 33.5 years (range 27 48) Mean 78.3 years Gender 81% male 25% male Race 59% Caucasian (not available) 38% African-American 2% Hispanic Length of stay Mean 63.1 days Mean 421 days Cost of care Mean $181/day Mean $93/day Payment source 52% Medicaid 72% Medicaid 28% hospice contract 3% hospice contract 7% private pay/other ins. 12% Private pay/ins. 5% Medicare 13% Medicare Meds Mean 11.2/patient Mean 6.9/patient Table 3 Common Clinical Management Issues Encountered During Admission Documented advance directives On admission 11 (26%) At discharge/death 31 (74%) Relevant AIDS clinical diagnoses Generalized wasting/weakness 32 (76%) HIV-related dementia 27 (64%) Active seizure disorder 15 (36%) Kaposi s sarcoma 8 (19%) Problematic management issues Recurrent falling 28 (67%) Episodic severe diarrhea 23 (55%) Narcotic analgesic usage 20 (48%) Progressive weight loss 18 (43%) Disposition Deaths 29 (69%) Discharges 13 (31%) n=42 admissions Meds medications and the patient if he/she could participate. The interdisciplinary care conference was intended to prioritize patient care concerns and define realistic goals of nursing home care. These conferences also highlighted the distinctions between the care of patients with AIDS and general nursing home patients, which was the genesis for this study. Methods Following approval by the facility s administrative ethics committee, we conducted a retrospective review of all patients with AIDS admitted through this program from its initiation in June 1993 through August 1995. Patients were identified by the admissions office. Data about demographics, length of stay, and costs were obtained for the general nursing home patient population and study patients. The clinical records of study patients were then reviewed for diagnostic and management issues addressed in the nursing home, advance directives, source of admission, and disposition at the time of discharge. No data was abstracted from hospital or ambulatory care records. Advance directives were defined as either a health care proxy designation, a living will or similar document providing specific written directives of the patient s wishes, or a do-notresuscitate order written by a physician involved in the nursing home care of the patient. Medication counts included all oral medications routinely administered at the end of the nursing home admission. Topical, parenteral, and non-routine medication orders, eg, prn orders, were not included. Cost figures provided by the facility s business office reflect accumulated charges for room, board, and nursing care equipment. Professional medical services, diagnostic testing, and patient transportation costs were not included. Patient satisfaction surveys completed by patients or family members on discharge from the nursing home during the study period were reviewed for comments related to the admission program of patients with AIDS. Statistical comparisons between variables from discharged study patients and those who died during their admission were conducted by independent samples t tests using SPSS Version 6.11 software. Results Figure 1 shows the flow of 42 admissions by 32 patients during the 26-month study period. Twentynine admissions ended with the patient s death, while 13 patients were discharged. Of the six discharges from the nursing home into community care settings, three patients were rehospitalized and later readmitted to the nursing home. Table 2 shows summary data from an administrative perspective, contrasted with the general nursing home patient population. Patients with AIDS were substantially younger and presented a reversed

Clinical Research and Methods Vol. 30, No. 6 439 Table 4 Comparison Between Study Patients Discharged and Those Who Died During Nursing Home Admission Died During Initial Discharged From Initial Significance Admission (n=29) NH Admission (n=13) of Difference Age Mean 37.3 years Mean 40.6 years ns (P=.7) Costs Mean $10,937/adm Mean $14,294/adm ns (P=.2) Length of stay Mean 61.2 days Mean 74.4 days ns (P=.6) Medication use Mean 10.9 Mean 11.6 P=.017 NH nursing home adm admission ns not significant gender ratio. Seven of the 22 admissions whose payment source at discharge was Medicaid were initially admitted with either private funds or another insurance system in place. These private funds were then exhausted or the insurance benefit expired and patients became eligible for Medicaid assistance after spending down to a qualifying level of financial resources. Table 3 summarizes the clinical issues encountered and the frequency of particular clinical management concerns. Seven of the patients with AIDS without advance directives at the end of their nursing home stay were discharged to an acute care hospital setting because of deteriorating health status. Table 4 shows the features of those 13 patients who survived their nursing home admission and were discharged, in contrast to those who died. No clinically meaningful differences were detected. Administrative review of nursing home care satisfaction surveys completed by discharged patients or family members of a patient revealed no instance of comments regarding the admission program for patients with AIDS. No negative comments were received from or about any of the AIDS patients, and satisfaction surveys revealed no difference in satisfaction between AIDS patients and others. Specific comments abstracted from study patients satisfaction surveys included approval about the bereavement support for family members and positive comments about the flexibility of nursing staff in allowing unrestricted visitation. Discussion The experience of caring for patients with AIDS in the nursing home provides a change for the usual nursing home health care delivery. The frequency of AIDS-related clinical diagnoses, such as HIV-related dementia, generalized wasting, and Kaposi s sarcoma, reported here is similar to prior reports of nursing home AIDS care. 11 The 70% mortality rate of patients with AIDS admitted to the nursing home during the study period is also consistent with other published reports of nursing home AIDS care. 11,12 The intensity and complexity of clinical management in this setting often occurred in the context of terminal care. Significant preparatory educational efforts helped staff deal with AIDS patients, but the need to decide reasonable goals of therapy was often a source of interdisciplinary frustration. Examples include progressive weight loss and episodic diarrhea, both commonly encountered situations that required frequent adjustments of medications and changes in dietary supplements. The interaction between disciplines in addressing the deteriorating nutritional measures and balancing concerns of timeintensive feeding assistance with other patient care needs were frequent sources of professional conflict. The physician s role in facilitating these discussions was instrumental, often by suggesting a realignment of clinical priorities while continuing to validate the input of each discipline into the total care of the patient. Once various team members gained a better understanding of a given patient s prognosis and expressed wishes, more realistic care goals were established. Such cross-discipline interactions became an important educational opportunity for the family practice residents to learn of varied clinical perspectives on familiar cases and to participate in the negotiation of complex clinical management issues. The financial savings from nursing home care for persons with AIDS may be substantial. The lifetime costs of HIV care have been estimated at $120,000 in 1992 dollars, with more than 70% of expenses directly attributed to inpatient care. 14 A study examining attempts to place hospitalized AIDS patients in skilled nursing facilities found a median overstay of 8 days hospitalization beyond acute care needs before alternate placement could be found or the patient died in the hospital. 5 The mean daily charge for nursing home care of patients with AIDS reported here ($181/day) was approximately one fifth that of the acute care hospital room and board charges in our region. While six patients (19%) were able to be discharged from the nursing home setting into a community care setting at least for some time, three ultimately needed to return to the nursing home after

440 June 1998 Family Medicine being rehospitalized. It was the impression of the nursing home admission office that all of the 37 admissions from these acute care hospitals would otherwise have remained in the hospital had this program not been in place. In conclusion, nursing home clinicians are familiar with the management of chronic, progressive illnesses with an emphasis on optimizing the remaining quality of life. The experience of adapting these positive nursing home care aspects to the care of a younger patient population described here should help other nursing home providers provide an alternative to hospital care for similar patients with AIDS. Correspondence: Address correspondence to Dr Heath, Department of Family Medicine, MEB Room 274, One RWJ Place, Box19, New Brunswick, NJ 08902. 732-235-7670. Fax: 732-246-8084. E-mail: heathjm@umdnj.edu. REFERENCES 1. Centers for Disease Control and Prevention. Update: trends in AIDS incidence, deaths, and prevalence United States 1996. MMWR 1997;46(8):165-73. 2. Benjamin AE. Perspectives on a continuum of care for persons with HIV illness. Med Care Rev 1989;winter:411-33. 3. Peri TC. The economic impact of AIDS: a challenge for nursing. Nurs Econ 1994;12(5):266-71. 4. McCormick WC, Inui TS, Deyo RA, Wood RW. Long-term care needs of hospitalized persons with AIDS: a prospective cohort study. J Gen Intern Med 1991;6(1):27-34. 5. Linsk NL, Marder AE. Medical social work long-term care referrals for persons with HIV infection. Health Soc Work 1992;17(2):105-15. 6. Westhoff LJ, Schaefer JC. Long-term care survey reveals challenges. Health Progress 1993;May:38-42. 7. Linsk NL, Cich PJ, Cianfrani L. The AIDS epidemic. Challenges for nursing homes. J Gerontol Nurs 1993;19(1):11-22. 8. Klein WC, Botticello PJ. Residents with AIDS: a comparison of facilities with experience and those without. AIDS Patient Care and STDs 1997;11(4):277-84. 9. AIDS Institute of the New York State Department of Health. Standards of care for long-term care facilities for persons with AIDS or HIV infection. New York: New York State Department of Health, July 1990 10. Bentley DW, Cheney L. AIDS and long-term care facilities. Infect Control Hosp Epidemiol 1990;11(4):202-6. 11. Lalonda B, Uldall KK, Berghuis JP. Delirium in AIDS patients: discrepancy between occurrence and health care provider identification. AIDS Patient Care and STDs 1996;10(5):282-7. 12. Glatt AE, Risbrook AT, Jenna RW. Successful implementation of a long-term care unit for patients with Acquired Immunodeficiency Syndrome in an underserved suburban area with a high incidence of Human Immunodeficiency Virus. Arch Intern Med 1992;152(4): 823-5. 13. Swan JH, Benjamin AE, Brown A. Skilled nursing facility care for persons with AIDS: comparison with other patients. Am J Pub Health 1992;82(3):453-5. 14. Hellinger FJ. The lifetime costs of treating a person with HIV. JAMA 1993;270(4):474-8.