Inpatient Management of the Adult with Advanced HIV Disease
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Inpatient Management of the Adult with Advanced HIV Disease
HIV InSite Knowledge Base Chapter
August 1998
Anne M. Hughes, RN, MN, FNP, Community Health Network of San Francisco
Diane Jones, RN, San Francisco General Hospital
Introduction
Overview
Patient Problems
Infection Control Issues
Infection Control and Nursing Care
TB and HIV: Nursing Care Issues
Impaired Gas Exchange
Nutrition and Fluid Deficits
Self-Care Deficit (Inability to Care for Self)
Psychosocial Concerns/Ineffective Coping
Potential for Falls
Pain
Prevalence
Appropriate Dosing of Analgesics
Causes of Acute Pain
Chronic Pain
Pain Management
Patient Education Related to Central Venous Access Devices
Skin Integrity
Prevalence of Skin Problems in HIV-Infected Patients
Risk Factors
Impaired Wound Healing
Nursing Management
Discharge Planning
Interdisciplinary Effort
Continuing Care
Discharge Planning for Patients with Tuberculosis
Patient Education
Background
Informational Needs of HIV-Positive Patients
Educating Patients
Complications of Substance Use
Intoxication and Withdrawal
Continued Drug Use
The Dying Patient
Management of Psychosocial Concerns
Conclusion
References
Tables
Table 1 :
Standards of Care for the Adult Hospitalized with HIV Disease
Table 2 :
Standards of Care for the Dying Patient
Table 3 :
Factors Contributing to the Complexity of Providing Inpatient Nursing Care for Persons with HIV Disease
Table 4 :
Oxygen Delivery Methods
Table 5 :
Possible Psychosocial Concerns of Hospitalized Patients with HIV Disease
Table 6 :
Factors Complicating the Management of Pain in Persons with HIV Disease
Table 7 :
Discharge Planning Risk Factors and Sample Discharge Goals
Introduction
Despite the promise of combination antiretroviral therapy and the prophylaxis of opportunistic pathogens in preventing or delaying HIV-related illnesses, some persons with HIV disease will become sick enough to require hospitalization. In 1990, the Agency for Health Care Policy and Research estimated that each person with advanced HIV disease will have 1.6 hospital admissions for each patient-year and an average hospital stay of 15.8 days per patient-year.( 1 ) Many changes in clinical management have occurred since that time. Our own hospital data compiled for admissions through June 30, 1994 indicated only 50% or one half of all SFGH patients with AIDS were hospitalized in the previous year.( 2 ) This finding is consistent with data reported by Fleishman, Hsia, and Hellinger.( 3 ) Greater functional impairment, pain, and a more terminal condition have been associated with hospitalization.( 3,4 )
Similarly in our experience, hospitalizations of patients with HIV disease usually result from illnesses that affect the patient's functional ability and cannot be evaluated and treated in an outpatient setting, such as pulmonary disease; neurologic disease; uncontrolled symptoms frequently related to gastrointestinal disorders; complications related to therapy; and diagnosis, staging, and therapy of malignancies and persons admitted explicitly for palliative care.
Nursing care of persons with HIV disease is an essential component of comprehensive patient care. This chapter describes management of particular nursing care issues for persons hospitalized with HIV disease ( Table 1 ) and for the dying patient ( Table 2 ) in reference to the nursing standard of care at San Francisco General Hospital (SFGH).( 5 ) These standards are evaluated and revised on an ongoing basis (1992, 1994).
Systems for delivery of nursing care (dedicated HIV/AIDS inpatient units versus "scattered bed" approach),( 6-8 ) nurses' occupational exposure risk,( 9 ) and the ethical issues (advanced care directives, withholding or withdrawing support, confidentiality and disclosure, assisted suicide, etc.)( 10 ) nurses face in working with this vulnerable population are discussed in other chapters.
Overview
The inpatient or acute care of persons with HIV disease requires intensive nursing care ( Table 3 ). In one study, Glover and colleagues concluded that patients admitted to the hospital with an AIDS diagnosis had significantly more nursing care requirements than non-AIDS patients, with the exception of those patients with AIDS admitted to critical care.( 11 )
Hospitalization for a person with HIV disease may represent a psychosocial transition (an experience that changes the person's view of the world), a developmental experience, a stress-inducing experience, and/or an existential crisis.( 6,12-15 ) Persons hospitalized with HIV disease confront profound questions related to their illness, the availability of effective treatment, their ability to pay for the care, loneliness, and the future - will they die, will they get well enough to leave the hospital, and when discharged from the hospital, will they continue to get the care and support they need.( 15 ) For adults with HIV disease, it is often an adjustment to increase contact with the health care system, manage the demands of treatment, and increase dependence on others, including health care providers, when they would otherwise have been self-sufficient.( 14 ) This change in roles and relationships almost always occurs in the course of advancing HIV disease and may be quite threatening.
Patient Problems
Infection Control Issues
Persons with HIV disease who are often admitted with fever and are being ruled out for infection are also at greater risk for some nosocomial infections. Reports describe nosocomial transmission of Mycobacterium tuberculosis (TB) infection among patients with advanced HIV disease.( 16 ) A cluster of Rifampin-resistant TB cases among patients receiving care in our inpatient unit and a coincident increased rate of staff PPD conversions have underscored this fact (unpublished data). Other reports document an increased risk (0.20 to 0.47 infections per 100 catheter days) of central venous access device (CVAD) infections in persons with advanced HIV disease; the exact reasons other than the underlying immune deficiency are unknown.( 17-19 ) In 1996, the Hospital Infection Control Practices Advisory Committee published revised CDC guidelines for isolation precautions for use in hospitals to prevent or control nosocomial infections.( 20 ) Effective nursing management can help decrease transmission of potential infectious pathogens, identify both new infections and possible causes of an infection, and administer both prophylactic and suppressive therapy.
Infection Control and Nursing Care
Nursing management practices to prevent, recognize, and control infection include: (1) ongoing clinical assessment and monitoring, including of vital signs (especially temperature), pulmonary and neurologic signs and symptoms, peripheral and central venous catheter sites, wounds and skin integrity, and changes in bowel and bladder management; (2) meticulous compliance with infection control measures, including intravenous site care and implementing institutional neutropenic precautions, such as single room assignment; (3) obtaining cultures; (4) assisting with hygiene; (5) administering antimicrobial agents; and (6) educating the patient and family regarding hand washing before and after toileting and, for family, before patient contact; avoiding patient contact with children with viral illnesses; using a respirator mask for staff and family with respiratory or flu symptoms; and maintaining adequate fluid and nutritional intake.
TB and HIV: Nursing Care Issues
With increased numbers of cases of TB in persons with HIV infection, hospital infection control and nursing staffs must address such concerns as: bed/room assignment; infection control policies and procedures; engineering controls, such as enhanced ventilation, air filters, respiratory masks, and ultraviolet radiation; and discharge criteria for homeless patients or those living in HIV congregate housing. Of the various strategies to decrease transmission of TB and multidrug-resistant TB, the most important in our experience is the early identification and isolation of at-risk patients.
One study of the impact of respiratory isolation for TB on 18 patients described themes of aloneness, boredom, lack of engaging activities, disruption of habits, depression, despair, stigmatization of isolation, limitations on communication, and impact on family support.( 21 )
Impaired Gas Exchange
Despite PCP prophylaxis and antiretroviral therapy, PCP remains the most common Centers for Disease Control (CDC)-defined AIDS-indicator opportunistic infection (OI) in adults across the country( 22 ) and in San Francisco.( 23 ) In our experience, PCP is the most common cause of impaired gas exchange. Persons with HIV disease may have other respiratory conditions that require hospitalization associated with problems of gas exchange. Some patients experience dyspnea and others may not.
In one study of 201 HIV-infected patients hospitalized with PCP, less than one third (n = 60) reported dyspnea during hospitalization.( 24 ) The nursing interventions cited by patients as most effective in managing this symptom were administration of oxygen (26%, n = 18) and medications (13%, n = 9), assisting with activities of daily living (ADLs) (11%, n = 8), monitoring/observing (11%, n = 8), and supporting/comforting (9%, n = 6). In a more recent study by the same researchers( 25 ) involving 90 patients hospitalized for the treatment of PCP, 28% reported breathing problems/SOB, 17% fever and chills, 8% fatigue and weakness, and 13% treatment-associated nausea and vomiting. These problems were reported consistently over three separate patient interviews; not surprisingly, the report of the problems decreased as the patient's overall condition was improving and discharge was imminent.
Nursing management of impaired gas exchange includes the following: (1) ongoing respiratory assessment (e.g., reporting any increased shortness of breath, cough, or chest pain) and pulse oximetry; (2) administering and titrating oxygen to a physician-prescribed oxygen saturation level; (3) administering antibiotics and monitoring for side effects; (4) administering opioids (e.g., morphine) for palliation( 26 ); (5) assisting with ADLs; (6) organizing care to provide maximal periods of rest; (7) repositioning the patient as necessary to facilitate excursion and promote postural drainage; (8) educating the patient regarding purse-lipped breathing to decrease tachypnea and anxiety; and (9) preparation for a pulmonary diagnostic work-up.
Table 4 lists the forced inspiratory pressures of the various oxygen delivery methods.( 27 )
Nutrition and Fluid Deficits
The consequences of malnutrition in persons with HIV infection and interventions to reverse malnutrition have become the subjects of growing interest since the recognition that loss of body cell mass is predictive of death.( 28 ) A French study of hospitalized AIDS patients concluded that weight less than 90% of ideal body weight was a significant predictor of limited survival (5 months vs 11 months).( 29 )
A number of disease- and treatment-related factors contribute to nutritional and fluid deficits in persons with HIV disease. When patients are hospitalized, they are at particular risk for nutritional problems. Many HIV-infected patients are admitted to the hospital with fevers, secondary dehydration, and increased metabolic requirements. For many patients, hospital food is unpalatable. An additional problem is the need to consider potential drug and nutrient interactions when scheduling medications and meals.
Nursing interventions to manage nutritional or fluid deficit include the following: (1) assessment and ongoing monitoring of weight, intake and output, ability to feed oneself, ability to swallow, symptoms interfering with food and fluid intake, orthostatic V.S., skin turgor, and cultural food preferences; (2) feeding the patient and encouraging oral intake; (3) administering intravenous hydration, appetite stimulants, antidiarrheals, and antiemetics as ordered; (4) advising the physician of uncontrolled symptoms that interfere with intake and advocating for work-up and/or symptomatic control; (5) obtaining consultations from a dietician for specific diet prescriptions; (6) educating the patient regarding adequate fluid intake (at least 2 to 3 liters/day); the role of nutrition in acute illness recovery; and the clinically significant drug-nutrient interactions; and (7) encouraging family and friends to bring the patient's favorite foods.( 30 )
Self-Care Deficit (Inability to Care for Self)
Many signs and symptoms associated with advanced HIV disease interfere with a person's self-care (functional) ability, including: uncontrolled diarrhea, nausea, vomiting, pain, weakness, fatigue, fevers, night sweats, altered mental status or cognitive impairment, urinary and/or fecal incontinence, vision or hearing loss, sensory problems, and the physical deconditioning that may result from these other signs/symptoms or an chronic illness.
Secondary effects of advanced HIV disease also contribute to the self-care deficit. For example, significant hygiene and skin care needs, as well as shame and social withdrawal, occur as a result of bowel and bladder incontinence. Clinical guidelines have been developed for the management of urinary incontinence in adults.( 31 )The risk of harming self and others that may accompany delirium requires greater attention to patient safety.( 32 )
Nursing management of self-care deficits includes: (1) assessing the patient's ability to perform ADLs (self-care ability), motor and sensory function, bowel and bladder management, and other symptoms interfering with patient's ability to manage ADLs; (2) assisting with those areas the patient cannot manage independently; (3) obtaining needed supplies and equipment; (4) advocating for aggressive symptom management; (5) recommending rehabilitation consultation as appropriate; (6) identifying the patient's continuing care needs, including the need for placement after discharge; and (7) educating the patient/caregiver regarding ADL management - that is, bathing, transfers (e.g., from sitting to standing, from bed to chair), using such assistive devices as a cane or walker, eating, bowel and bladder management, and medication management.
Psychosocial Concerns/Ineffective Coping
Hospitalization may bring for the first time the full realization of being HIV seropositive, being newly diagnosed with an AIDS defining condition, acknowledging a progressive or a disabling stage of illness, or coping with a terminal phase of illness.( 33 ) These realizations are likely to be compounded by many psychosocial concerns, such as those listed in Table 5 .
Given the short lengths of stay, the role of nurses in the inpatient acute care settings most often focuses on crisis intervention. While most patients and their caregivers can be expected to effectively manage the concerns just outlined, patients with dual and triple diagnoses (HIV infection, substance use, and psychiatric illness) will require more intensive interventions. Clinical depression in a persons with HIV and other medical problems is often underestimated in terms of prevalence and is overlooked and untreated in practice.( 34 )
Nursing management of psychosocial concerns includes the following: (1) assessing and monitoring on an ongoing basis for the above concerns; (2) determining previous coping strategies, beliefs and concerns regarding illness, previous hospital experiences, and ability to communicate needs and to ask for help; (3) determining access to basic services; (4) creating an environment of acceptance and respect for human dignity; (5) determining the patient's knowledge of illness and treatment while providing accurate information appropriate to a patient's understanding; (6) encouraging honest, consistent communication between hospital staff and the patient and the patient's self-identified support system; (7) referring the patient to a social worker for assistance with basic services (e.g., housing, food) and community resources (e.g., delivered meals, volunteer services for chores or support); (8) referring the patient to counselors and/or a chaplain for psychosocial support and spiritual counseling if indicated; (9) monitoring for any maladaptive response, such as suicidal ideation, verbal threats, or assaultive behavior; setting explicit, appropriate behavioral limits; protecting the patient, self, and others (calling security if there is a threat of violence); and consulting with a physician for psychiatric evaluation and or chemical restraints; (10) providing patient opportunities for choice as much as possible; (11) referring the patient with a history of substance use to a substance abuse counseling service if the patient agrees and such a service is available, monitoring for signs and symptoms of intoxication and or withdrawal, advocating for symptom control, and relying on protocol to manage the person who is using drugs or alcohol in-house; and (12) for patients expected to die in the hospital, activating the nursing standard of care for the adult dying patient (see Table 2 and subsequent section concerning the dying patient).( 35 )
Potential for Falls
At SFGH, inpatient falls among persons with HIV disease are two to three times more common than in other medical and surgical patients without HIV disease.( 36,37 ) Risk factors associated with falls in persons with HIV disease include: weakness; fatigue; fecal or urinary incontinence or urgency; orthostatic hypotension due to adrenal insufficiency, dehydration, medication side effects; and sensory and perceptual problems related to dementia, central nervous system lesions, and peripheral neuropathy. Given that most persons with HIV disease are young or middle-aged, the significant morbidity and mortality of elderly patients who fall (i.e., hip fractures) is generally not a problem.( 38 )
Nursing management to prevent patient falls includes the following: (1) assessing for fall risk factors (e.g., confusion, mobility problems, incontinence, orthostatic hypotension); (2) informing all other caregivers about patients at risk for fall; (3) instructing the patient and family to request assistance when the patient is transferring (e.g., from bed to chair) or ambulating; (4) keeping the call light, bedpan, urinal, and belongings within the patient's reach; (5) keeping the bed in low position with side rails up; (6) increasing direct observations and, if necessary, moving the patient's room nearer to the nurses' station; (7) offering frequent assistance with ADLs; (8) using safety devices (e.g., bed alarms); (9) consulting with the physician regarding need for sedation or physical restraints if the patient is a danger to himself or herself and one-on-one observation is impossible; providing the necessary care, support, and monitoring if physical restraints are used.
Pain
Prevalence
Pain is a significant symptom for hospitalized persons with advanced HIV disease. A retrospective study of patients with HIV disease discharged from a hospital in the New York City area reported that 54% had pain, based on review of 96 patients' medical records. Furthermore, pain was second only to fever as the chief complaint at the time of admission.( 39 ) Of particular interest were the findings that there was no statistically significant relationship between (1) specific HIV disease-related OI and a particular pain syndrome, (2) stage of disease and presence of pain, and (3) use or nonuse of injection drugs and complaints of pain. Experience at SFGH suggests a prevalence of pain similar to the rates reported in this study.
Appropriate Dosing of Analgesics
The prevalence,( 39 ) characteristics,( 40,41 ) and, to a minimal extent, some evidence-based recommendations for management of pain in persons with HIV disease have been published.( 42 ) Many lessons learned from the management of cancer pain have been applied to HIV-related pain, such as the use of the WHO cancer pain analgesic ladder, around the clock (ATC) vs PRN dosing for chronic pain, oral route of administration for analgesics as the preferred route when equianalgesic doses are given, and the need for regular evaluation of the efficacy of the treatment plan.( 43 )
In one study, 85% of a subset of ambulatory persons with AIDS with pain had frequent and persistent pain that was under medicated.( 44 ) The under-treatment of HIV-related pain was reported in two other studies.( 45,46 ) These findings underscore that persons with HIV disease may be at even greater risk for under-treatment of pain than are persons with cancer-related pain. Substance users are probably at greatest risk for under treatment of their pain.( 43,45,47 )
Causes of Acute Pain
In hospital settings, pain-inducing diagnostic or therapeutic procedures include lumbar punctures, bone marrow biopsies, and pleurodesis. Conscious sedation may be required to manage procedural pain.
Some medications commonly prescribed to treat HIV disease have painful side effects (e.g., DDI, INH, and vincristine may cause peripheral neuropathy and amphotericin, foscarnet, and AZT may cause headaches). Intermittent analgesics or other techniques may therefore prevent or control such treatment-related pain.
Chronic Pain
Chronic pain in HIV disease may last indefinitely and therefore requires management different from that of acute pain. Chronic pain may affect mood, functional status, relationships, and quality of life and sometimes is a harbinger of HIV disease progression. As a result, a variety of nonpharmacologic interventions may be indicated. Most of these interventions are implemented in the outpatient setting and occur over time (e.g., physical therapy techniques, ADLs modifications). Several factors that compound the pharmacologic management of pain in persons with HIV disease are listed in Table 6 .
Pain Management
Nursing management of pain includes the following: (1) ongoing assessment for the presence and characteristics of pain (location, quality, and intensity on a 0-to-10 scale, and its aggravating and relieving factors); (2) administering analgesics and adjuvant agents and evaluating their efficacy; (3) advocating for around-the-clock dosing (versus as-needed dosing) of analgesics for chronic pain, preferably by the oral route; (4) evaluating and preventing untoward side effects (e.g., constipation from chronic opiate or tricyclic antidepressant use); (5) using nonpharmacologic techniques as appropriate, such as assuring adequate periods of undisturbed rest, positioning, heat and cold applications, warm baths, massage, and other relaxation techniques; and (6) educating the patient and family regarding (a) reporting pain at its onset and before it becomes disabling, (b) how to use the 0-to-10 scale to rate pain intensity, (c) reporting uncontrolled or inadequately controlled pain, (d) the medications used to control pain and for side effect management, and (e) nonpharmacologic measures to relieve pain.
Patient Education Related to Central Venous Access Devices
The placement of central venous access devices (CVAD) allows chronic intermittent intravenous administration of approved therapies to patients with CMV retinitis, malignancies, poor peripheral venous access, and severe needle phobia. CVAD may also be required for patients receiving chemotherapy regimens (particularly those that include vesicant agents) or total parenteral nutrition (TPN), and those following certain experimental protocols.
Depending on the reason for the CVAD and the particular device placed, patients or their family or friends will need to provide some level of CVAD management after the patient is discharged from the hospital. Nurses commonly educate patients, family, and friends about how to manage the CVAD.
Nursing management of CVAD patient education includes the following: (1) assessing the patient's mental status, vision, hand-to-eye coordination, ability and willingness to learn, ability to read, availability of an in-home caregiver, and adequate home environment (refrigeration is required to store ganciclovir and TPN); (2) providing printed materials including photographs regarding CVAD management (many pharmaceutical companies make available printed patient education materials concerning CVAD home management; at SFGH, we developed a specific patient booklet called "Taking Care of Your Central Line Catheter"); (3) instructing and demonstrating skills required to manage CVAD, such as hand washing and gloving, obtaining the necessary supplies, flushing the CVAD, site care (if the CVAD site is visibly accessible), disposal of "sharps" and hazardous wastes, setting up and infusing medication, regulating infusion rate, discontinuing infusion, and recognizing the signs and symptoms of CVAD infection; (4) reassuring and supporting the patient and in-home caregiver that with time and practice they can master the necessary CVAD skills; (5) consulting with a clinical nurse specialist for assistance with special patient-education needs; and (6) consulting with a social worker or clinical nurse specialist regarding discharge referrals for home infusion services and/or visiting nurse services.
Skin Integrity
Prevalence of Skin Problems in HIV-Infected Patients
Although there are no data estimating the incidence of pressure ulcer development nor the rates of nonsurgical wounds in persons with HIV disease, Berger reported that skin disease may affect 90% of persons infected with HIV.( 48 ) Nurses monitor patients for changes in skin integrity, provide preventive care to maintain skin integrity, and take steps to promote rapid wound healing.
Risk Factors
Risk factors for development of pressure ulcers include incontinence, immobility, nutritional impairment, and altered levels of consciousness.( 49 ) Reports describe cutaneous drug reactions with or without pruritus in persons with symptomatic HIV disease. One report noted drug rash in 50% of persons receiving trimethoprim-sulfamethoxazole.( 48 ) Other antibiotics, especially the penicillins and other sulfa agents, also cause rash.( 48 ) A few patients at SFGH have developed Stevens-Johnson syndrome (severe mucocutaneous ulceration) as a result of a drug allergy to sulfa agents.
A small number of patients develop fungating and ulcerative wounds secondary to malignancies such as Kaposi's sarcoma (KS) and non-Hodgkin's lymphoma (NHL). Wound healing is rarely a realistic treatment goal for fungating KS lesions.( 50 ) Palliative chemotherapy and, in some instances, radiation therapy decrease the tumor and its lymphatic obstruction. Large field radiation therapy for KS in the lower extremities, however, may cause nonhealing skin lesions.
Impaired Wound Healing
No report evaluates wound healing in HIV-infected persons. Intuitively, however, one expects higher wound infection rates and impaired wound healing because of nutritional deficiencies, metabolic changes, and inability to suppress infections in advanced HIV disease.( 51 )
Nurses at SFGH do not use occlusive dressings for herpetic lesions because they promote a moist environment and delay the drying of herpetic lesions required for healing and infection control. Until nursing research demonstrates specific wound management requirements in persons with HIV, however, nurses at SFGH continue to follow general wound management principles.( 52 )
Nursing Management
Nursing management of impaired skin integrity includes the following: (1) assessing pressure ulcer risk factors, condition of the skin, and presence of wound(s), as well as wound size, location, condition of surrounding tissue, evidence of granulation, odor, amount and color of drainage, and current skin and wound care regimens; (2) initiating pressure ulcer prevention activities if the patient is at risk (e.g., establishing a turning schedule if the patient is unable to turn in bed, providing pressure-relieving mattresses or special beds, and instituting a bladder training program as appropriate); (3) consulting with a dietician or nutritionist to determine the need for nutritional support; (4) consulting with the nursing wound care specialist, if available, regarding appropriate wound cleaning and dressing plan; (5) educating the patient or in-home caregiver regarding the skin and wound care regimen; (6) advocating for rehabilitation consultation, if appropriate, to increase the patient's mobility; and (7) consulting with the social worker or discharge planner regarding the patient's continuing wound care needs after discharge.
Discharge Planning
Interdisciplinary Effort
Discharge planning is an interdisciplinary process requiring collaboration between the inpatient care team, primary care provider, and any community-based service involved in the patient's care. Additionally, it demands understanding the goals of ongoing care, knowledge of reimbursement and entitlement benefits, and knowledge of available community resources, including eligibility restrictions and hours of service. Discharge planning needs to begin as soon as the patient's response to medical treatment is clear. Table 7 outlines factors that may complicate discharge planning (particularly in a public hospital setting that serves patients who are indigent and/or lacking in preventive health care) and examples of discharge goals.
Identification of such discharge planning risk factors generally results in the appropriate patient care referrals. Patient-caregiver interviews and, as needed, interdisciplinary patient care team conferences may be essential to clarify the patient's preferences for continuing care, available help at home, and care requirements appropriate for the expected illness course. At SFGH, nurses routinely refer patients to the medical social worker who serves as discharge planner. As appropriate, however, nurses may refer the patient to eligibility workers, clinical nurse specialists, substance use counselors, dieticians, rehabilitation therapists, public health nurses, or home health and/or hospice programs. The information from these providers enables physicians, social workers, or nurses to formulate a discharge plan or goal consistent with the patient's wishes and available resources.
Continuing Care
A careful assessment of a patient's living situation and needs is essential. As disease progresses and patients are routinely discharged from the hospital with significant medical and clinical needs, assessing family and/or caregivers' ability to provide the physical, social, and emotional support and care to clients takes on greater importance. This assessment includes: the impact of disruption on the family's routines (home care visits, clinic appointments, medication administration), financial constraints, adequacy of resources to provide the level of care, potential tensions between the family of origin and the family of choice.( 53 )
Discharge Planning for Patients with Tuberculosis
The increase in cases of Mycobacterium tuberculosis has created new challenges in planning continuing care after discharge from the hospital. Because of risk of infection, hospitals cannot discharge any potentially infectious person (i.e., persons who are sputum-smear positive for acid-fast bacteria) to an HIV disease residential care setting in San Francisco and must retain that patient until three negative sputum smears on three consecutive mornings are obtained. Health care workers at SFGH refer all patients with active TB to the San Francisco Department of Public Health Tuberculosis Control program, which directly observes therapy as clinically warranted. Anastasio stated that successful treatment of patients with HIV/AIDS and TB as well as prevention of TB transmission depends on the patient's participation in the treatment process.( 54 ) Many health care providers are choosing to focus on the therapeutic relationship between patients and their providers as the means to ensure adherence to treatment plans. Mutual goal-setting and contract setting have been found to be among the most successful interventions. A model of care that empowers both the nurse and the patient will create conditions that increase the patient's commitment to treatment and the patient's knowledge of TB, as well as the necessary home care and community referrals. A TB treatment contract can be used to clarify mutual expectations in the nurse-patient relationship.( 54 )
Patient Education
Background
Nurses play a vital role in patient education. Patients informed about their illness and its treatment are probably more effective in coping with its demands, less likely to suffer from anxiety, and more likely to adhere to treatment requirements. Furthermore, informed consent for a diagnostic or therapeutic procedure or research protocol can be given only when competent patients have accurate and comprehensive information for weighing alternatives. Patient education includes activities that provide patients with the knowledge and skills necessary to manage their illness. Successful patient education programs respond to patient-identified needs, are culturally and linguistically appropriate, and are tailored to the abilities of the patient.
Informational Needs of HIV-Positive Patients
In 1995, we resurveyed patients, nurses and counselors regarding patient education needs assessment survey; a similar survey was conducted in 1990. Twenty-seven patients with HIV/AIDS were interviewed about what they believed are the most important topics or subjects on which to be informed before discharge from the hospital.( 55 ) The most frequent rated topics were: medications and treatments (n = 13), community resources (n=11), when to call the clinic/come to the emergency room (n=9), nutrition (n=9), and follow up care (n=9). To respond to these needs, nurses evaluated and revised patient education materials. Medication information sheets that accompany medications were reviewed for clarity, paying careful attention to the complex drug/drug and drug/food interactions. Existing nutrition patient information materials for people with HIV were similarly reviewed, focusing on literacy level and the frequent lack of cooking facilities available to many patients. Medical social workers identified community resources and compiled a reference list for patients to use. In addition, a one-page handout entitled "When to Call the Clinic" offers guidelines for when to seek medical care or follow-up and lists key new signs and symptoms to report to the patient's health care provider.
Few materials are available in Spanish and other languages and for the functionally illiterate. Most such materials focus on HIV prevention, which, although essential, do not include information for persons with symptomatic HIV disease or their in-home caregivers.
Educating Patients
Nursing management related to educating patients and families regarding HIV disease includes the following: (1) assessing the patient's understanding and knowledge of OI or HIV-related conditions, diagnostic procedures, treatment, transmission- and risk-reduction activities, infection-control measures at home, nutrition, self-care activities, concerns and fears related to HIV disease or the current hospitalization, continuing care needs or resources, ability to read and write, hand-eye coordination for psychomotor skills, and primary language, memory, and problem-solving ability; (2) providing one-on-one counseling to address patient-identified needs and other topics; (3) using written materials when appropriate to reinforce verbal messages; (4) using interpreter services if available for non-English-speaking patients, while preserving confidentiality by avoiding using family members to translate if possible; (5) reviewing important concepts frequently; (6) eliciting feedback from the patient and family regarding their understanding of information presented; and (7) positively reinforcing the patient's efforts to participate in care.
Complications of Substance Use
Intoxication and Withdrawal
In the inpatient setting, these complications, along with drug craving, can lead to behaviors that affect the relationship between the patient and the health care team. Drug users usually enter the medical setting expecting to be judged and to not have their concerns addressed (especially those related to pain management).( 56 ) New models and strategies are needed to care for active drug users because the traditional chemical dependency approach based on abstinence from drugs as the only goal of treatment has inadequate resources and a meager success rate.( 57 )
With such short lengths of stay, very specific outcomes need to be identified (see Table 1 ). Given that users expect judgment and punitive treatment, nurses must anticipate and reassure the patient because stress, fear, and blame all increase a patient's craving for drugs.( 58 )
Nursing interventions include: (1) assessment/evaluation and physician notification as indicated of the patient's seizure history (i.e., traumatic or related to alcohol withdrawal), substance use (which substances, dose, frequency, date/time last dose, administration technique), signs and symptoms of intoxication or withdrawal (i.e., changes in mental status, pupillary response, vital signs, nausea, vomiting, diarrhea, musculoskeletal symptoms - seizure, ataxia); (2) confer with physician to arrange medication administration for treatment of intoxication or withdrawal (note: effective guidelines exist for opiates and alcohol but not for amphetamines and cocaine); (3) determine with physician need for toxicology screen as indicated (i.e., suspected use in the hospital); (4) reorient and provide for safety needs (i.e., falls, seizure, aspiration, physical restraints); (5) if sedated due to intoxication or treatment of withdrawal: turn, cough, and deep breath every 2 hours, assess breath sounds each shift, maintain aspiration precautions (head of bed elevated, position to side, etc) and monitor for signs/symptoms of respiratory distress (i.e., vital sign changes, abnormal breath sounds, decreased oxygen saturation) (6) refer to substance use counseling for evaluation of whether or not the patient is interested in drug treatment; (7) inform the patient in a nonpunitive manner of hospital policy that prohibits use of alcohol or other substances while hospitalized.
Continued Drug Use
If inpatient use of illicit drugs is suspected, we recommend a team approach to confront the patient, reminding them of hospital policy, establishing a plan of care, and providing for ongoing evaluation and re-enforcement of plan. It is essential to ask the patient the reason for his/her substance use (e.g., withdrawal symptoms or pain inadequately managed). A written patient contract is used as indicated.
Because many patients refuse drug treatment programs based on an abstinence requirement, nurses need to incorporate principles of harm reduction when educating/counseling patients or families regarding drug or alcohol use. This effort may take the form of reviewing injection technique in order to prevent abscesses or referring the patient to local needle exchange sites after discharge from the hospital.
The Dying Patient
The organization of care in many hospitals is for the cure or control of disease (lifesaving at any cost), as opposed to aggressive palliation. Consequently, pursuing aggressive palliation is often delayed, if ever accepted, and all too often is not discussed with the patient or his or her support system.( 59 )
At any given time, persons hospitalized for HIV-related illness may progress into a terminal phase; indeed, in our experience at SFGH, some patients are admitted to the hospital explicitly for palliative care that could not be provided at home. Discharge to home with hospice care or to a residential hospice program may not always be a realistic goal.
The SFGH nursing standard of care for the dying patient is outlined in Table 2 . Central to activation of this standard is the physician's determination that the patient is dying and the acceptance of palliative care by the patient and patient's family. The former condition is complicated by the medical training in many teaching hospitals that house staff provide all and any treatment available that may reverse a potentially reversible condition and also by the hesitance of some physicians to withdraw therapy once it has been initiated. These issues are especially true in recently diagnosed patients. For patients and families, not pursuing aggressive therapy may be equated with "giving up." Frequently, nurses need to advocate with the physician to consider the burden of continued treatment on the patient's quality of life and to re-evaluate the treatment goals.
Whenever possible, the patient's preferences are incorporated into the plan of care, assuming that the patient has been given realistic information regarding prognosis with or without treatment. The well-informed patient who is able to understand the risks and benefits of any treatment or lack of treatment and able to make a decision always has the right to refuse treatment. In cases in which the patient wishes aggressive therapy and caregivers believe it would be futile and cause suffering without benefit, however, all efforts should be made to counsel the patient and family about the probability of harm of such treatment. Alternatives to that treatment should be offered and explained. A commitment to managing uncomfortable symptoms should be assured (i.e., pain or air hunger). If the patient or the family still insists on the patient's receiving treatment that the physician believes is futile, the physician is not obliged to provide this treatment. The patient and the family retain the right to seek another physician who may offer that treatment. It is hoped this is done in the context of a therapeutic relationship that has been maintained over time.
The realization of mortality during youth and middle age, (when thinking about death is uncommon), makes a patient's decision to stop treatment especially difficult. Ambivalence is common. Consider the patient who says, "I am tired of living with this illness. I don't want to be stuck [for venipuncture], I don't want to be hooked up to some machine [respirator], I don't want to take medicines that make me feel awful, I don't want to live like this. I've seen so many others die and I don't have the energy to begin new relationships. No one is left but me." This same person may also adamantly wish to continue PCP prophylaxis and wonder why TPN has not been offered. In such an instance, prophylactic, as opposed to purely palliative care, would continue.
The focus of palliative care for these patients is to relieve the physical, psychological, social, and spiritual distress related to death and dying. As such, routine physiologic monitoring or therapeutic interventions, such as vital sign measurement, pulse oximetry, even the titration and use of oxygen, is limited to only being performed when it contributes to the patient's comfort. Any activity is discontinued if it causes discomfort to the patient, such as turning or repositioning the patient in bed, inserting a naso-intestinal tube for enteral feedings, or coaxing the patient to take pills or eat or drink. Given the meaning that food and eating have in society, the patient and supportive people are counseled that the intent is to decrease the symptom distress, not to starve the patient. The staff must often explain to families that nasotracheal suction is performed only to relieve respiratory distress, and that starving is not inherently painful. On the other hand, forced feedings, including tube feedings, and intravenous fluid hydration may be more uncomfortable.
Management of Psychosocial Concerns
The interventions to manage the physical symptoms related to dying include many of the interventions previously described in the sections on impaired gas exchange, pain, patient safety: falls, and self-care deficit. In general, pharmacologic intervention with strong opiates (e.g., morphine, hydromorphone, and fentanyl) is required to control pain and dyspnea.
The nursing management of the psychosocial concerns of the dying patient includes the following: (1) assessment of understanding and acceptance of the patient's illness and prognosis, beliefs and concerns regarding dying and death, coping, ability to communicate needs and ask for help, and spiritual and cultural beliefs about dying; (2) providing a single room, encouraging family to bring in personal items from home, and allowing extended visiting privileges; (3) for the non-English-speaking patient, using the hospital interpreter or bilingual staff at least daily to assess the patient's needs and concerns and to communicate the treatment plan, avoiding the use of family members to interpret; (4) encouraging verbalization of feelings and concerns about death and dying, acknowledging the patient's fears, listening to the patient and family reminiscences about the patient's life and family's experiences; (5) assigning consistent caregivers, including patient and family, in decisions about care; (6) encouraging honest, consistent communication about prognosis and condition, and participating in patient and family conferences with the care team; (7) instructing the patient and family about comfort measures and expected condition changes: (a) increasing sleep, (b) decreasing time interacting with family, (c) inability to swallow or eat, (d) breathing pattern changes, (e) loss of bowel and bladder control, and (f) that patient may hear and be aware of their presence when no longer able to speak and respond; (8) advocating that the patient's wishes regarding care are followed; (9) providing time for observance of cultural and spiritual practices; (10) referring the patient as indicated to (a) chaplain for spiritual and psychosocial support, (b) social worker for assistance with continuing care needs and psychosocial support, (c) specialists for symptom management if there is evidence of ineffective patient and family coping, (d) ethics committee if unresolved conflict exists among patient and family members about the treatment plan or if the patient and family request assisted euthanasia; and (11) allowing family and friends to participate in postmortem care or to have time alone with the patient's body after death if they wish.
Conclusion
The care of persons with advanced HIV disease requires all of nursing's physiologic, psychosocial, and spiritual caregiving expertise as well as its ethical and moral base.( 60 ) In the inpatient setting, the pressure of shortened lengths of stays, acuity of patients at the time of admission, and frequently at the time of discharge as well, mandate prioritization of patient care needs, crisis intervention skills, and a plan for continuing care after hospitalization. Benner and Wrubel elegantly stated that the "privileged place" of nursing is to be present with human beings who are facing illness, transition, and death.( 61 ) The challenge for inpatient nurses is to acknowledge that "privileged place" and the caring ethic at the center of nursing practice at a time of dramatic health care system changes.( 61 )
References
1.
Agency for Health Care Policy and Research. Cumulative costs of treating AIDS are estimated. Research Activities 1990;126:5.
2.
San Francisco General Hospital. AIDS Admissions and Discharges, July 1, 1993 to June 30, 1994. 1995.
3.
Fleishman JA, Hsia DC, Hellinger FJ. Correlates of medical service utilization among people with HIV infection. Health Serv Res 1994;29:5, 527-548.
4.
Hellinger FJ, Fleishman JA, Hsia DC. AIDS treatment costs during the last months of life: Evidence from ACSUS. Health Serv Res 1994;29:5, 569-581.
5.
Hughes A, Walent R, Jones D, et al. Nursing standard of care: The adult hospitalized with HIV disease. San Francisco General Hospital, San Francisco, California, 1994. Unpublished report.
6.
van Servellen G, Lewis CE, Leake B. The stresses of hospitalization among AIDS patients on integrated and special care units. Int J Nurs Stud 1990;27:235-247.
7.
van Servellen G, Lewis CE, Leake B, et al. Patient satisfaction on AIDS and oncology special care units and integrated units: A pilot study. J Assoc Nurses AIDS Care 1991;2:29-39.
8.
Fahs MC, Fulop G, Strain J, et al. The inpatient AIDS unit: A preliminary empirical investigation of access, economic, and outcome issues. Am J Public Health 1992;82:576-578.
9.
Melroe NH, Russell B. Infection control. In: Casey KM, Cohen F, Hughes AM, eds. ANAC's Core Curriculum for HIV/AIDS Nursing. Philadelphia: Nursecom, 1996;363-374.
10.
Grady C, Senak M. Ethical and legal aspects. In: Casey KM, Cohen F, Hughes AM, eds. ANAC's Core Curriculum for HIV/AIDS Nursing. Philadelphia: Nursecom, 1996;358-362.
11.
Glover SA, Corbett I, Gilmore N, et al. The nursing care needs of hospitalized patients. AIDS Patient Care 1994;8:2, 64-67.
12.
Parkes CM. Psychosocial transitions: A field for study. Soc Sci Med 1971;5:101-115.
13.
Weisman AD, Worden JW. The existential plight in cancer: Significance of the first 100 days. Int J Psychiatry Med 1976-77;7:1-15.
14.
Namir S. Treatment issues concerning persons with AIDS. In: McKusick L, ed. What to do about AIDS: Physicians and Mental Health Professionals Discuss the Issues. Berkeley: University of California Press, 1986;87-94.
15.
McKusick L. Hospitalization: A rite of passage. HIV Frontline 1991;5:1-4.
16.
Centers for Disease Control. Nosocomial transmission of multidrug-resistant tuberculosis among HIV-infected persons - Florida and New York, 1988-1991. MMWR 1991;40:585-591.
17.
Stanley HD, Charlebors E, Harb G, et al. Central venous catheter infections in AIDS patients receiving treatment for cytomegalovirus disease. J Acquir Immune Defic Syndr Hum Retrovirol 1994;7(3):272-278.
18.
Raviglione MC, Battan R, Pablos-Mendez A, et al. Infections associated with Hickman catheters in patients with acquired immunodeficiency syndrome. Am J Med 1989;86:780-786.
19.
Skoutelis AT, Murphy RL, MacDonell KB, et al. Indwelling central venous catheter infections in patients with acquired immune deficiency syndrome. J Acquir Immune Defic Syndr Hum Retrovirol 1990;3:335-342.
20.
Garner J. Special Report: Guidelines for Isolation Precautions in Hospitals. Infect Control Hosp Epidemiol 1996;17;53-80.
21.
Kelly-Rosini L, Perlman D, Mason D. The experience of respiratory isolation for HIV-infected persons with TB. J Assoc Nurses AIDS Care 1996;7:129-136.
22.
Centers for Disease Control and Prevention. HIV/AIDS Surveillance 1995;7(2):18.
23.
San Francisco Department of Public Health AIDS Office. AIDS Surveillance Report: Aids Cases Reported Through June 1996. 1996;8-9.
24.
Janson-Bjerklie S, Holzemer W, Henry SB. Patients' perceptions of pulmonary problems and nursing interventions during hospitalization for Pneumocystis carinii pneumonia. Am J Crit Care 1992;1:114-121.
25.
Holzemer WL, Henry SB, Rielly CA, et al. Problems of persons with HIV/AIDS hospitalized for Pneumocystis carinii pneumonia. J Assoc Nurses AIDS Care 1995-6;3:23-30.
26.
Balkstra CR. Dyspnea. In: ANAC's Core Curriculum for HIV/AIDS Nursing. Casey KM, Cohen F, Hughes A, eds. Philadelphia: Nursecom, 1996;209.
27.
Finucane BT, Santora AH. Principles of Airway Management. Philadelphia: F.A. Davis, 1988;44.
28.
Kotler D. Causes and consequences of malnutrition in HIV/AIDS. Proceedings of the 1992 International Symposium on Nutrition and HIV/AIDS. Physicians Association for AIDS Care, 1992;5-8.
29.
Gerard L, Flandre P, Raguin G, et al. Life expectancy in hospitalized patients with AIDS: Prognostic factors on admission. J Palliat Care 1996;12:26-30.
30.
Weaver, K. Nutritional deficit. In: ANAC's Core Curriculum for HIV/AIDS Nursing. Casey KM, Cohen F, Hughes A, eds. Philadelphia: Nursecom, 1996;227-229.
31.
Urinary Incontinence Guideline Panel. Urinary Incontinence in Adults: Clinical Practice Guideline, AHCPR Pub. No 92-0038. Rockville, MD: Agency for Health Care Policy and Research, Public Health Service, U.S. Department of Health and Human Services, March 1992.
32.
McCarthy M. Altered Mental Status: Delirium. In: ANAC's Core Curriculum for HIV/AIDS Nursing. Casey KM, Cohen F, Hughes AM, eds. Philadelphia: Nursecom, 1996;200-201.
33.
Counseling across the HIV spectrum. HIV Frontline 1992;8:1-8.
34.
McEnany G, Hughes A, Lee K. Depression and HIV: A nursing perspective on a complex relationship. Nurs Clin North Am 1996;31:1, 57-80.
35.
Hughes A, Nichols R, Caesar J, et al. Nursing standard of care: Management of the dying patient. San Francisco General Hospital, San Francisco, California, 1992, revised 1995.
36.
McAleer L, Hall L, Scott D, et al. A study of inpatient falls by AIDS patients at Pacific Presbyterian Medical Center and Garden Sullivan Hospital 1985-87. Pacific Presbyterian Medical Center and Garden Sullivan Hospital, San Francisco, CA, 1987.
37.
Nursing quality assurance: Reports of inpatient falls, San Francisco General Hospital Medical Center, 1983-1995. San Francisco General Hospital, San Francisco, CA, 1995.
38.
Whedon MB, Shedd P. Prediction and prevention of patient falls. Image 1989;21:108-114.
39.
Lebovits AH, Lefkowitz M, McCarthy D, et al. The prevalence and management of pain in patients with AIDS: A review of 134 cases. Clin J Pain 1989;5:245-248.
40.
Singer EJ, Zorilla C, Fahy-Chandon B, et al. Painful symptoms reported by ambulatory HIV-infected men in a longitudinal study. Pain 1993;54:15-19.
41.
O'Neill WM, Sherrad JS. Pain in human immunodeficiency virus disease: A review. Pain 1993;54:3-14.
42.
Jacox A, Carr DB, Payne R, et al. Management of Cancer Pain. ClinicalPractice Guideline, No. 9. AHCPR Publication No. 94-0592. Rockville, MD. Agency for Health Care Policy and Research, U.S. Department of Health and Human Services, Public Health Service, March 1994;139-141.
43.
Newshan G. Pain. In: ANAC's Core Curriculum for HIV/AIDS Nursing. Casey KM, Cohen FL, Hughes AM, eds. Philadelphia: Nursecom, 1996;229-234.
44.
Breitbart W, Passik S, Rosenfeld B, et al. Under treatment of pain in AIDS. In: Program and Abstracts of the American Pain Society, Miami, 1994. Abstract 94742.
45.
Anand A, Carmosino L, Glatt AE. Evaluation of recalcitrant pain in HIV-infected hospitalized patients. J Acquir Immune Defic Syndr Hum Retrovirol 1994;7:52-56.
46.
McCormack JP, Li R, Zarowny D, et al. Inadequate treatment of pain in ambulatory HIV patients. Clin J Pain 1993;9:279-283.
47.
Payne RM. Pain in the drug abuser. In: Foley KM, Payne RM, eds. Current Therapy of Pain. Philadelphia: BC Decker, 1989;46-54.
48.
Berger TG. Dermatologic care in the AIDS patient. In: Sande MA, Volberding PA, eds. The Medical Management of AIDS. 5th ed. Philadelphia: Saunders, 1996;159-168.
49.
Panel for the Prediction and Prevention of Pressure Ulcers in Adults. Pressure ulcers in adults: Prediction and prevention. Clinical practice guidelines, number 3. AHCPR Publication No. 92-0047. Rockville MD: Agency for Health Care Policy and Research, Public Health Service, U.S. Department of Health and Human Services, May 1992.
50.
Ivetic O, Lyne PA. Fungating and ulcerating malignant lesions: A review of the literature. J Adv Nursing 1990; 15:83-88.
51.
Hotter AN. Wound healing and immunocompromise. Nurs Clin of North Am 1990;25:193-203.
52.
Stotts NA. Seeing red and yellow and black: The three-color concept of wound care. Nursing 1990;20:59-61.
53.
Powell-Cope G. Alteration in family functioning; family caregiver burden/strain. In: Casey KM, Cohen F, Hughes AM, eds. ANAC's Core Curriculum for HIV/AIDS Nursing. Philadelphia: Nursecom, 1996;243-244, 251-252.
54.
Anastasio C. HIV and Tuberculosis: Noncompliance revisited. J Assoc Nurses AIDS Care 1995;6(2):11-22.
55.
Campbell R. HIV/AIDS Patient Education Needs Assessment. San Francisco General Hospital, San Francisco, CA, 1995.
56.
Shernoff M, Springer E: Substance abuse and AIDS: A report from the frontlines. J Chem Dependency 1992;5(1):141-144.
57.
Springer E: Effective AIDS prevention with active drug users: The Harm Reduction Model. J Chem Dependency 1991; 4(2):37.
58.
Fisk S. Substance users. In: Casey KM, Cohen FL, Hughes AM, eds. ANAC's Core Curriculum for HIV/AIDS Nursing. Philadelphia: Nursecom, 1996;305-309.
59.
Benoliel JQ. Care, communication and human dignity. In: Garfield CA, ed. Psychosocial Care of the Dying Patient. New York: McGraw-Hill, 1978;34-45.
60.
Fox RC, Aiken LH, Messikomer CM. The culture of caring: AIDS and the nursing profession. Milbank Q 1990;68:226-256.
61.
Benner P, Wrubel J. The Primacy of Caring: Stress and Coping in Health and Illness. Menlo Park: Addison-Wesley, 1989.
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