Psychosomatics 39:154-161, April 1998
© 1998 The Academy of Psychosomatic Medine
Psychiatric Care in an AIDS Nursing Home
Mary Ann Adler Cohen, M.D.
Received March 5 , 1997; revised July 18, 1997; accepted August 19, 1997. From the Rivington House Health Care Facility, New York Medical College, New York. Address reprint requests to Dr. Cohen, Rivington House Health Care Facility, 45 Rivington Street, New York, NY 10002.
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ABSTRACT
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Of the first 675 persons admitted to a new acquired immunodeficiency syndrome (AIDS) nursing home, 423 were seen in psychiatric consultation. They ranged in age from 22 to 70 years. Most were coping with multiple losses of health, fitness, homes, careers, loved ones, strength, and functional capacity. All had multiple and severe medical illnesses. Of the 423 persons evaluated, 422 (99.8%) had 1 or more psychiatric disorders. Three hundred fifty-one (83%) had a diagnosis of dementia, 349 (82.5%) substance abuse, 276 (65%) psychiatric diagnoses other than cognitive or substance abuse, and 61 (14.4%) delirium. The individuals admitted to the AIDS nursing home were younger, more medically and psychiatrically ill, on more complex medical regimens, and had a higher prevalence of both dementia and substance abuse than those in a separate study of geriatric nursing homes.
Key Words: Nursing Home • Acquired Immune Deficiency Syndrome • Acquired Immunodeficiency Syndrome • Human Immunodeficiency Virus • AIDS • HIV • Psychiatric Care
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INTRODUCTION
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During the beginning of the acquired immunodeficiency syndrome (AIDS) epidemic, most persons with AIDS did not survive long enough to require long-term care. Just as medical advances have enabled more people to survive to older ages, so persons with AIDS are surviving and living longer with their illnesses. The high prevalence of psychiatric disorders in geriatric nursing homes has led to the conclusion that these nursing homes have begun to replace state mental hospitals as primary sources for residential care for persons over 65 years of age.1 It is estimated that the prevalence of psychiatric disorders in nursing homes for older adults ranges from 80% to 90%.2–4
Persons with AIDS who are living longer are surviving because of good medical care, major advances in antiretroviral treatment, and prophylaxis for some of the initially fatal complications such as Pneumocystis carinii pneumonia (PCP).5 However, some of the insidious opportunistic infections, such as progressive multifocal leukoencephalopathy, cytomegalovirus retinitis, toxoplasmosis, and human immunodeficiency virus (HIV) dementia, continue to take their toll on patients' lives. The new protease inhibitors and other antiretroviral therapies in multiple combinations are enabling persons to live longer, healthier lives and even lowering viral loads to undetectable levels in some persons. For persons living longer to live more comfortable lives with preservation of independence and dignity, it is helpful to determine the prevalence of psychiatric disorders, including HIV dementia, in the AIDS nursing home population. It is important to recognize the magnitude of cognitive disorders and tragic consequences of HIV dementia, such as suicide6,7 and firesetting,8 to develop appropriate staffing patterns and guidelines for care. Because persons with AIDS may have an additional problem of active injection drug use, behavioral problems associated with obtaining and injecting drugs as well as managing pain pose added complications in the nursing home setting.
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SETTING
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A new nursing home dedicated to the comprehensive care of persons with AIDS opened its doors on March 13, 1995. By August 19, 1996, 675 persons with AIDS had been admitted to the nursing home. Of these, 423 were seen in psychiatric consultation, a consultation rate of 63%. These patients ranged in age from 22 to 70 years (average age: 41 years). Most were coping with multiple losses of health, fitness, homes, careers, loved ones, strength, and functional capacity. The average length of stay was 35 days. All had multiple and severe medical illnesses, including progressive multifocal leukoencephalopathy, cytomegalovirus retinitis, end-stage renal disease, disseminated Kaposi's sarcoma, and other opportunistic infections and cancers. A more detailed picture of the medical illnesses is summarized in Table 1. Some persons were visually impaired; some were quadriplegic, hemiplegic, or paraplegic. All consultations and follow-up care were provided by a consultation-liaison psychiatrist with added qualifications in geriatric psychiatry and 15 years of experience caring for persons with AIDS (MAAC). Each consultation included a complete history and psychiatric examination. Each 1- to 2-hour assessment included a thorough assessment of cognitive functions, including memory, registration, recall, orientation, fund of information, abstraction, calculation, constructional apraxia testing (clock and Bender drawings), and an assessment of understanding of illness.
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RESULTS
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Of the 423 persons with AIDS seen in psychiatric consultation, 422 (99.8%) had 1 or more psychiatric disorders. Three hundred fifty-one (83%) had a diagnosis of dementia, 349 (82.5%) substance abuse, 276 (65%) psychiatric disorders other than neurocognitive or substance abuse disorders, and 61 (14.4%) delirium. The results are summarized in Table 2, and the psychiatric diagnoses are listed in Table 3. The most prevalent psychiatric diagnoses other than cognitive disorders or substance abuse disorders were adjustment disorder with depressed mood, major depression, mood disorder with depression, paranoid schizophrenia, and mood disorder with mania. Although one patient had no psychiatric disorder, the majority had multiple diagnoses. Medical diagnoses were complex, severe, and multiple. One person had Kaposi's sarcoma, adrenal insufficiency, diabetes mellitus, wasting syndrome, esophageal candidiasis, HIV neuropathy and PCP; another had HIV cardiomyopathy, pericardial effusion, congestive heart failure, wasting syndrome, anemia, oral candida, Mycobacterium avium complex, and end-stage renal disease and was on hemodialysis.
Nearly every patient was on a multiplicity of medicines for both treatment and prophylaxis of opportunistic infections as well as antiretroviral combination therapy. Management of psychiatric disorders and pain was complicated by present illnesses, special vulnerabilities, and potential drug-drug interactions.
Management of Behavioral Problems
The most difficult behavioral problems centered around violent behavior, screaming, noncompliance with medication or other medical treatments, and signing out against medical advice. Although these problems were often overwhelming to staff, the subtle, ongoing staff stressors centered around bereavement, owing to the high mortality rate and severe behavioral regression usually seen in persons with dementia.
Violent and Aggressive Behavior
The problem of assaultive behavior toward staff was both frightening and dangerous. It was most often associated with HIV dementia complicated by substance abuse or delirium.
Several patients presented with aggressive or assaultive behavior related to episodes of delirium associated with end-stage liver disease and hepatic encephalopathy superimposed on HIV dementia, substance abuse disorder, and borderline personality disorder.
Behavioral Regression
Regressive behaviors included inappropriate sexual overtures, loss of amenities, exposure of genitalia, inability to bathe or shower alone, refusal to tend to personal hygiene, openly masturbating in the presence of staff, and infantile demanding behavior. Some persons with severe regression refused medicines because of childlike, oppositional, and negative behavior.
Other behavioral problems included wandering, stealing, and suicidal ideation. Suicidal ideation and attempts have been described in association with HIV dementia.6,7 Unusual for a more traditional nursing home population were problems associated with use of alcohol or drugs. Relapses resulted in behavior changes, for example, delirium and aggressive behavior. Another unique psychiatric diagnosis was mania associated with cryptococcal meningitis or HIV encephalopathy often complicating HIV dementia. Although firesetting has been described8 in association with HIV dementia, staff education, frequent fire drills, and staff vigilance have reduced the risks associated with this problem.
Screaming and Pain Management
The problems of screaming and pain management were associated with severe illness complicated by substance abuse and dementia. One patient example will be described.
Patient Case.
A 39-year-old man with presumptive progressive multifocal leukoencephalopathy with paraplegia, hemiplegia, and progressive quadriparesis had movement in only his nondominant arm, neck, and head. He was in severe pain from both HIV neuropathy and contractures from the time he was admitted. He had recurrent urinary tract infections and recurrent pneumonia. The patient was regressed, helpless, and extremely demanding, and his course was considerably complicated by substance abuse disorder, HIV dementia with regression, and borderline personality disorder. He was in pain, was anxious, and screamed almost continually. It was difficult to achieve adequate pain management because the patient did not express himself clearly with regard to pain because of regressive, demanding, and drug-seeking behavior. The patient's pain pattern was assessed on a pain analogue scale. His anxiety was addressed in individual psychotherapy and family therapy. Screaming occurred only when the patient was alone. The family was encouraged to bring in a tape player and classical music on audiotape to be played when family or staff could not be with the patient. Short-acting narcotics were changed from as needed to standing doses and gradually to controlled-release morphine sulfate and a fentanyl-transdermal system. Thioridazine in a low dose at bedtime was added for dementia and regression and served to potentiate narcotic analgesia. Lorazepam was prescribed for anxiety and given in both standing and as needed doses, so that the patient could specifically request it. His pain was controlled, and his screaming diminished.
When asked to describe his pain, the patient was able to assess his pain and to classify it on a pain analogue scale despite dementia and regression, as described by Ferrell.9 Although this individual had an especially complex combination of severe, multiple medical and psychiatric disorders with unremitting pain and screaming, evaluation and management of pain were a challenge, as in many patients. The medical course was complicated in other patients by end-stage liver disease and end-stage renal disease. HIV neuropathy responded well to combination therapy with narcotic analgesics, tricyclic antidepressants, low-dose neuroleptics, and anticonvulsants, as well as acupuncture and relaxation response.
Recommendations for standing doses of narcotic analgesics, use of long-acting narcotics such as controlled-release morphine sulfate, and the fentanyl-transdermal system at adequate doses and frequency prevented the need for patients to beg for medication. As needed pain medications are humiliating to patients and do not control pain adequately, causing repeated crescendos.
Special Vulnerability
Persons with AIDS, dementia, and severe and multiple illnesses are vulnerable to diarrhea, anorexia, protein-energy undernutrition, electrolyte imbalance, anemia, bone marrow depression, seizures, diabetes mellitus, renal disease, and gastrointestinal infections. In late-stage AIDS, the use of lithium for mania is contraindicated because of the vulnerability of patients to diarrhea, dehydration, electrolyte imbalance, renal disease, delirium, and confusion. Sodium loss and dehydration predispose persons with AIDS to lithium toxicity, which is characterized by diarrhea, nausea, vomiting, irritability, twitching, seizures, delirium, confusion, coma, and death. Mania responds well to anticonvulsants and neuroleptics. Valproic acid should be used with caution because of its potential for extrapyramidal symptoms and hepatotoxicity. Carbamazepine should be used with caution because of its potential for anticholinergic delirium. Selective serotonin reuptake inhibitors such as sertraline and paroxetine should be used with caution because they can cause insomnia, anorexia, weight loss, and hyperglycemia. Benzodiazepines are relatively contraindicated because they can cause confusion, disinhibition, and depression. However, benzodiazepines may need to be prescribed for benzodiazepine or alcohol withdrawal or for those persons with benzodiazepine dependence who have been on them for many years and do not choose to discontinue them while severely ill. Neuroleptics should be titrated carefully because of vulnerability to seizures and extrapyramidal side effects.
Persons with HIV dementia are vulnerable to all the extrapyramidal side effects, including neuroleptic malignant syndrome, tardive dyskinesia, akathisia, dystonia, oculogyric crisis, and tremor. In choosing a neuroleptic for HIV dementia with psychosis or HIV dementia and mood disorder with psychosis, low-potency neuroleptics such as thioridazine or chlorpromazine may be preferable if an individual has a gait disturbance, hemiparesis, or some evidence of stiffness or movement disorder. Low-potency neuroleptics are also preferable if the psychiatric disorder is associated with insomnia since they have sedative properties. However, low-potency neuroleptics have anticholinergic side effects and can produce orthostatic hypotension and contribute to falls. Olanzepine may be useful for persons with AIDS and schizophrenia or mania. The high-potency neuroleptics such as haloperidol are safer from the standpoint of cardiac and hepatic toxicity in low doses but have high extrapyramidal profiles. High-potency neuroleptics have fewer anticholinergic properties and do not produce orthostatic hypotension but can contribute to falls by causing stiffness, loss of associated arm movements, and festinating gait. Risperidol is a high-potency neuroleptic with fewer extrapyramidal side effects when low doses are prescribed. The tricyclic antidepressants such as desipramine and nortriptyline are useful in low doses and relatively safe in frail persons, and do not pose the risk of liver or cardiac failure. Amitriptyline, imipramine, and doxepin should be used with caution because of the potential for anticholinergic delirium, orthostatic hypotension, and falls in frail and debilitated persons. All neuroleptics and tricyclic antidepressants can lower the seizure threshold. Of the neuroleptics, thioridazine and haloperidol in low doses do so the least. The medications recommended for treatment of psychiatric disorders are summarized in Table 4.
Signing Out Against Medical Advice and Determination of Decisional Capacity
Every patient has the right to self-determination and should be able to decide whether to stay in a health care facility, to accept medical care, and to refuse procedures or sign out against medical advice (AMA). Mental illness per se, including dementia, schizophrenia, or depression, does not necessarily preclude such decision making.
Primary physicians can determine decisional capacity to sign out AMA by using the following criteria: 1) The patient understands the nature of the illness; 2) the patient understands the extent of his or her disability; 3) the patient understands the need for medical care and how to obtain follow-up care; 4) the patient can manage activities of daily living or can negotiate to obtain adequate home help; and 5) the patient understands the need for and has access to shelter, clothing, and food.
Physicians and other nursing home staff need to be educated about how to determine decisional capacity. Guidelines for determination of decisional capacity are presented in Appendix 1A and Appendix 1B. Understanding issues of decisional capacity in persons with HIV dementia can help preserve the delicate balance between safety and autonomy.
Comprehensive Approach to Care
A comprehensive team approach was enhanced by psychiatric input, facilitating group process, and improving communication among caregivers. Along with teams composed of a social worker, nursing staff, recreation therapists, substance abuse counselors, the physicians also had input from dietitians, chaplains, and other caregivers. To provide adequate care, the author initiated a systematic program of education about dementia and delirium for all staff and patients. The importance of providing ongoing orientation, bedside calendars and clocks, as well as familiar objects from home was emphasized. A support group was held weekly and co-led by a chaplain and a recreation therapist as well as the psychiatrist. The group was well attended, with from 10 to 32 patients per session. There was a high level of participation, with themes centering around educational issues, coping skills, and death and dying. The group was popular and often ran over the 1 hour designated. The sessions emphasized an accepting and nurturing approach. In addition to group therapy, the author provided individual, couple, family therapy, crisis intervention, and bereavement intervention. Ongoing education included management of pain and violent behavior and determination of decisional capacity.
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DISCUSSION AND CONCLUSIONS
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The individuals admitted to a new AIDS nursing home were younger, more medically and psychiatrically ill, on more complex medical regimens, and had a higher prevalence of psychiatric disorders than those in nursing homes for older persons. The average age of the AIDS nursing home patients was 41, whereas the average age in traditional nursing homes ranges from 65 to 85 years. Individuals admitted to geriatric nursing homes are more stable from a medical and psychiatric standpoint, and are more chronically medically ill, with diseases such as diabetes mellitus, hypertension, osteoarthritis, chronic obstructive pulmonary disease, congestive heart failure, coronary artery disease, and Parkinson's disease. Persons in the AIDS nursing home had a higher level of medical acuity with frequent and new onset of infections, metabolic derangements, seizures, diabetic ketoacidosis, as well as chronic medical problems, such as toxoplasmosis, progressive multifocal leukoencephalopathy, protein energy undernutrition, HIV neuropathy and nephropathy, and diarrhea. Although patients in geriatric nursing homes have dementia, the most common cause is dementia of the Alzheimer's type. And while other psychiatric diagnoses include depression and schizophrenia, it is unusual for active injecting drug users or cocaine users to survive to the older ages. A comparison of prevalence of psychiatric disorders in the AIDS nursing home and geriatric nursing homes is summarized in Table 5. The geriatric nursing home consultations were described by Rovner and colleagues.4
The persons with AIDS who are referred for nursing home care are often acutely ill, and many require total care. They may be severely ill, with multiple medical and psychiatric disorders that cause them to be unable to cope with activities of daily living and instrumental activities of daily living. The AIDS patients in the nursing home were younger, more medically and psychiatrically ill, and had a higher prevalence of dementia and substance abuse than those in a study of geriatric nursing homes. A comprehensive psychiatric program should include individual, couple, family and group psychotherapy, bereavement interventions, pain management, and support for staff.10 An educational program can prevent violence and create innovative ways to maximize residual cognitive function and coping strategies. By creating a supportive and accepting environment and addressing pain and psychological distress, individuals with late-stage AIDS can live more comfortable lives, die more dignified and comfortable deaths, and have less need for hastened death.
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ACKNOWLEDGMENTS
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The author thanks Dr. Cesar A. Alfonso for assistance in tabulating these data and Angela Darling for manuscript preparation.
This paper was presented, in part, at the annual meeting of the Academy of Psychosomatic Medicine, on November 15, 1996, in San Antonio, Texas, and at the annual meeting of the American Psychiatric Association on May 8, 1996, in New York.
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REFERENCES
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Schmidt LJ, Rheinhardt AM, Kane RL, et al: The mentally ill in nursing homes: new back wards in the community. Arch Gen Psychiatry 1977; 34:687–691[Abstract]
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Chandler JD, Chandler JE: The prevalence of neuropsychiatric disorders in a nursing home population. J Geriatr Psychiatry Neurol 1988; 1:71–76
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Rovner BW, Kafonek S, Filipp L, et al: Prevalence of mental illness in a community nursing home. Am J Psychiatry 1986; 143:1446–1449[Abstract/Free Full Text]
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Rovner BW, German PS, Broadhead J, et al: The prevalence and management of dementia and other psychiatric disorders in nursing homes. International Journal of Psychogeriatrics 1990; 2:13–24
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Selik RM, Chu SY, Ward JW: Trends in infectious diseases and cancers among persons dying of HIV infection in the United States from 1987 to 1992. Ann Intern Med 1995; 123:933–936[Abstract/Free Full Text]
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Alfonso CA, Cohen MA: HIV dementia and suicide. Gen Hosp Psychiatry 1994; 16:45–46[Medline]
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Alfonso CA, Cohen MA, Aladjem AD, et al: HIV seropositivity as a major risk factor for suicide in the general hospital. Psychosomatics 1994; 35:368–373[Abstract/Free Full Text]
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Cohen MA, Aladjem AD, Brenin D, et al: Firesetting and AIDS. Ann Intern Med 1990; 112:386–387
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Ferrell BA: Pain evaluation and management in the nursing home. Ann Intern Med 1995; 123:681–687[Abstract/Free Full Text]
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Cohen MA: Biopsychosocial aspects of the HIV epidemic, in AIDS and Other Manifestations of HIV Infection, edited by Wormser GP. New York, Raven Press, 1992, pp. 349–371
This article has been cited by other articles:
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M. Cohen, R. G. Hoffman, C. Cromwell, J. Schmeidler, F. Ebrahim, G. Carrera, F. Endorf, C. A. Alfonso, and J. M. Jacobson
The Prevalence of Distress in Persons With Human Immunodeficiency Virus Infection
Psychosomatics,
February 1, 2002;
43(1):
10 - 15.
[Abstract]
[Full Text]
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ABSTRACT
INTRODUCTION
