CHAPTER 16. HIV/AIDS
James C. Pace
At the end of the year 2003 approximately 790,000 to 1.2 million Americans were living with human immune deficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) and approximately 46 million were living with HIV/AIDS worldwide (World Health Organization, 2003). Prior to the advent of antiretroviral medications (AZT monotherapy first appeared in 1987), HIV/AIDS was viewed as a death sentence—death often occurred less than 1 year after the diagnosis. Once protease inhibitors (PIs) were developed in the mid-1990s, with the concurrent development of highly active antiretroviral therapy (HAART), there were dramatic changes in the trajectory of HIV/AIDS. AIDS-related deaths in the United States declined approximately 70% in the years 1985 through 2001 following the introduction of HAART; death rates from AIDS have only recently begun to show a very slow upward direction due to rapidly developing viral resistance factors (Center for Palliative Care Education, 2003). As a result, post-HAART health care clinicians in HIV/AIDS care have often not been immersed in the historical issues surrounding death and dying as have seasoned clinicians with memories of caring for those with short survival times combined with extremely limited health care options. Since 1997, AIDS has no longer been one of the top 15 causes of death for all age groups combined; however, AIDS remains the fifth leading cause of death among all Americans aged 25 to 40, the leading cause of death among African American men in this age group, and the third leading cause of death among African American women in this age group (Center for Palliative Care Education, 2003).
Currently, HIV/AIDS is perceived as a chronic, manageable disease for those who can take HAART. HIV/AIDS continues to have an unpredictable course, however, related to impaired immune competence, side effects of medications, comorbidities, and issues involving the psychosocial and emotional costs of living with HIV/AIDS (Sherman, 2001). As with other chronic disease states, HIV/AIDS constitutes a continuum of health concerns beginning at initial seroconversion and continuing into its terminal stages. Current statistics reveal that in the absence of therapy, this slowly progressive disease has an average course of 10 to 15 years.
AIDS is often a disease of the disenfranchised and marginalized. In 2004, African Americans accounted for 49% of all AIDS cases although they composed only 13% of the population, and 19% of all AIDS cases occurred in Hispanics although they represented only 14% of the U.S. population (Centers for Disease Control and Prevention [CDC], 2004; Ramirez & de la Cruz, 2003). Many of these patient groups lacked access to medical care, mistrusted the health care system, were involved with the health care of family members to the exclusion of personal health status, or were diagnosed with AIDS during hospitalization when HIV infection was far advanced. It is a well-established fact that minority groups are most often diagnosed with HIV/AIDS later in the disease process than are whites and have significantly greater immunosuppression and symptoms (Sackoff & Shin, 2001). If HAART was made available to many in the above-mentioned groups, adherence was often compromised by such issues as poverty, substance abuse, comorbidities, depression, and lack of sustained support systems (Center for Palliative Care Education, 2003; Jordan, Vaughn, & Hood, 2004). It is important to consider the palliative care implications of HIV/AIDS especially in light of the above scenarios and because HAART therapies are losing their antiviral effectiveness for a select few, are refused entirely by some, and are discontinued by many who tire of the associated pill burden of complex HAART therapies and their often unrelenting drug and metabolic side effects.
PATHOPHYSIOLOGY AND NOMENCLATURE
HIV is a retrovirus that has a particular affinity for the body’s immune system, particularly infecting macrophages and T-lymphocytes (T cells or CD4 cells). Continual destruction of the body’s immune system leaves the body open to more virulent attacks by HIV as well as from opportunistic organisms that would not be able to harm nonimpaired immune systems. Infection with HIV can eventually progress to AIDS. In the term acquired immunodeficiency syndrome, “acquired” means that the illness is not usually inherited from a parent, “immunodeficient” describes the condition of altered immune competence, and “syndrome” means that AIDS cannot be defined by a single disease or illness but rather by a collection of possible health insults. HIV and AIDS are not synonymous terms. HIV describes a living virus; AIDS names a syndrome of health care concerns. Being HIV positive refers to the presence of the virus within a person’s body irregardless of T-cell count; AIDS describes a profound immunocompromised state where the T-cell count falls below 200 cells (or a percentage of <14%) (see below for details). A person can be HIV positive for decades without showing any symptoms of or being diagnosed with AIDS (Sherman, 2001; Zwolski, 2001). Once infected with HIV by means of exposure to infected blood, semen, or bodily fluids, a person will develop antibodies to HIV that can be detected by a blood test. The development of such antibodies may take anywhere from a few weeks to 6 months after exposure. Once antibodies are detected with an HIV test, the person is then diagnosed as being HIV positive.
In 1993, the CDC developed a revised HIV classification system and an expanded AIDS surveillance definition for adolescents and adults. The CDC system provides a clinically based definition of AIDS that includes categories A, B, and C. These categories are briefly summarized as follows (Zwolski, 2001):
▪ Category A includes patients with acute primary HIV illness (acute retroviral syndrome), asymptomatic HIV infection, or persistent generalized lymphadenopathy.
▪ Category B includes a number of symptomatic conditions that are either directly attributable to HIV infection or have a clinical course or management complicated by the presence of HIV. Examples of these symptomatic conditions include oropharyngeal candidiasis, vulvovaginal candidiasis, constitutional symptoms to include fever and diarrhea, herpes zoster, oral hairy leukoplakia, pelvic inflammatory disease, peripheral neuropathy, and cervical dysplasia.
▪ Category C comprises AIDS indicator conditions, including bronchial, tracheal, pulmonary, or esophageal candidiasis; invasive cervical cancer; cryptococcosis; cryptosporidiosis; cytomegalovirus disease (CMV, including CMV retinitis); encephalopathy; persistent herpes simplex (HSV); Kaposi’s sarcoma; lymphomas (Burkitt’s, immunoblastic, primary of brain); Mycobacterium avium complex (MAC) and Mycobacterium tuberculosis; Pneumocystis jiroveci (formerly carinii) pneumonia (PCP); toxoplasmosis of brain; and HIV wasting disease.
TRAJECTORY AND ASSOCIATED CLINICAL SYMPTOMS
Primary HIV infection (acute retroviral syndrome), the period immediately after infection with HIV (2 to 8 weeks), is characterized by high levels of viremia and is accompanied by such symptoms as fever (97%), myalgia or arthralgia (58%), lethargy and malaise (common), lymphadenopathy (70%, particularly in the groin and head and neck), pharyngitis (73%), and an erythematous, nonpruritic, maculopapular rash affecting most often the face or trunk (70%).
Chronic HIV infection is divided into categories based on the CD4 count:
▪ Early: CD4 count > 500. Although the virus is actively reproducing at this stage, there is generally a period of clinical latency in terms of visible symptoms. Minor infections may take longer times to heal, depending upon the patient. Patients often report symptoms such as mild diarrhea, cough, fatigue, night sweats, minor skin rashes, weight loss, oral problems, and persistent or recurrent vaginal yeast infections.
▪ Middle (intermediate): CD4 count 200 to 500. Features present in early HIV disease often worsen (e.g., diarrhea, recurrent HSV, oral or vaginal candidiasis). There is an increased incidence of bacterial infections of sinuses, respiratory tract, and skin; there is also an increased disruption of lymphoid tissue.
▪ Late (AIDS): CD4 count < 200. Appearance of opportunistic infections—any or a combination of the AIDS indicator conditions as described by CDC (see category C on p. 234). Lymphoid tissue is mostly replaced by fibroid tissue (Sherman, 2001; Zwolski, 2001).
DIAGNOSTICS AND ASSESSMENT
HIV-positive status is tested by means of an ELISA (enzyme-linked immunosorbent assay) (which measures antibody to HIV) and, if reactive, is then confirmed with the Western blot. Once positive status is documented, the clinician looks at various laboratory diagnostic tools for the establishment of a long-term treatment plan that includes medical management combined with nutritional, emotional, and behavioral health supportive care.
▪ CD4 cell count or percentage: A normal CD4 count is 600 to 1200 cells per microliter (or 30% to 60%). AIDS is diagnosed when the CD4 cell count drops below 200 (<14%). At this time, prophylaxis against various opportunistic infections (PCP, cryptococci, MAC) should be initiated (Table 16-1).
| CMV, Cytomegalovirus; HAV, hepatitis A virus; HBc, hepatitis B core antibody; HBV, hepatitis B virus; MAC, | ||
| Mycobacterium avium complex; PCP, Pneumocystis jiroveci (formerly carinii) pneumonia; TB, tuberculosis; TMP-SMX, trimethoprim-sulfamethoxazole. | ||
| Pathogen | Indication | First Choice |
|---|---|---|
| PCP | CD4 <200 | TMP-SMX |
| Toxoplasmosis | CD4 <100 | TMP-SMX |
| MAC | CD4 <50 | Azithromycin or clarithromycin |
| CMV | Secondary prophylaxis | Ganciclovir |
| Valganciclovir | ||
| Foscarnet | ||
| Cidofovir | ||
| Cryptococcosis | Secondary prophylaxis after history of cryptococcal meningitis | Fluconazole |
| Tuberculosis | Positive PPD (≥5 mm induration) | INH |
| Recent contact with TB case | ||
| History of inadequately treated TB | ||
| Streptococcus pneumoniae | All patients | Pneumovax |
| HBV | Antibody HBc negative | HBV vaccine series |
| Influenza | All patients | Influenza vaccine |
| HAV | Antibody HAV negative | HAV vaccine series |
▪ CD8 count: These are sometimes called the cytotoxic T cells; the normal count is 420 to 660 cells/mm 3. The CD8 lymphocytes mediate the direct killing of cells infected with HIV. Gradual decline in CD8 cells (as well as CD4 cells) indicates disease progression. In an adult, a count above 400 cells/mm 3 is considered desirable.
▪ Other laboratory tests of significance in the treatment plan include routine complete blood cell count to monitor for anemia; renal and liver function tests to monitor the effects of HAART on various organs that metabolize drug; hepatitis, toxoplamosis, and CMV antibody testing to check for potential disease comorbidities; cholesterol and glucose monitoring to assess metabolic complications of therapy; and annual tuberculosis and VDRL (Venereal Disease Research Laboratory slide) testing as a means of monitoring common infectious diseases (Barlett, 2005).
THERAPEUTIC INTERVENTIONS
Lifestyle Modifications
▪ Foods: A diet tailored to the needs of each client is preferred based on disease progression and calorie and protein needs. Foods are to be fully cooked and properly stored. Patients should avoid raw foods and shellfish due to the presence of bacteria, parasites, and viruses. Bottled water should be used in place of tap water. Kitchen counters must be cleaned before, during, and after food preparation.
▪ Personal care: Patients are urged to not share toothbrushes or razors to minimize the possibility of sharing blood. They should not change pet litter boxes to avoid contact with harmful microorganisms. If caring for pets is necessary, patients should wear gloves when changing cat litter boxes, birdcages, fish tanks, and reptile cages, as well as a mask when cleaning bird cages. Patients are urged to use antibacterial soaps free of fragrances.
Emotional, Spiritual, and Economic Factors
Support systems, including family, friends, faith communities, and support groups as well as individuals’ faith and spirituality can be excellent sources of hope, strength, peace, and well-being for clients. Patients’ self-concept, body image, current social support, and feelings of isolation should be routinely assessed. Feelings of depression, anxiety, grief, loss, guilt, or hopelessness, as well as drug and alcohol use or dependency, violence in the home, suicidal ideations, and any desire to harm others, should be explored with patients. Economic assessments include the monitoring of food and shelter on an ongoing basis, financial assistance as needed, community resources for medications, and economic entitlements where necessary (Kirton, 2001; Sherman, 2001).
Medications for Routine Use
HAART treatment regimens are complex, usually involving at least three drug combinations to avoid viral resistance patterns. These medications should be prescribed and monitored by experienced health care providers. As of 2005, clinicians have 26 approved antiretroviral drugs from four drug classes from which to construct HAART regimens: nucleoside/nucleotide reverse transcriptase inhibitors (NRTIs or “nukes”), non-nucleoside reverse transcriptase inhibitors (NNRTIs or “non-nukes”), PIs, and the newest product line of fusion/entry inhibitors. The U.S. Department of Health and Human Services (DHHS) has developed guidelines for initiating treatment in therapy-naïve patients that include two NRTIs and either the lopinavir/ritonavir coformulation or efavirenz (DHHS, 2004). (The clinician should visit the DHHS AIDS Information Web site for details on antiretroviral therapies; see the reference list for the Web site address.) Despite drug improvements and advances, the ideal drug combination still does not exist. Currently approved agents continue to exhibit drug-related toxicities, daily pill burden, regimen complexity, suboptimal antiviral activity, and low threshold for the development of drug resistance. In addition, prophylaxis regimens entail daily, two or three times weekly, or weekly dosing of various antibiotics or antifungal agents based on CD4 cell immunocompetence (Kirton, 2001; Murphy, 2003).
PALLIATIVE CARE MANAGEMENT
Treatment goals for people infected with HIV/AIDS include promoting the highest quality of life possible, maximizing functional ability, and alleviating suffering through pain and symptom management throughout the illness trajectory. Palliative care for people with HIV/AIDS begins in the earliest stages of illness and increases in complexity as the disease progresses. Patients with HIV/AIDS may exhibit a multitude of symptoms resulting from a variety of disease processes, side effects of medications, and other therapies. AIDS can be characterized by bouts of severe debilitating illness followed by miraculous-appearing rebounds of apparent health and vitality. Such polarities often make it difficult to describe a traditional model of palliative care for this patient population (Kirton, 2001; Sherman, 2001; Center for Palliative Care Education, 2003).
Palliative care for people who are HIV positive and who are without an AIDS diagnosis includes the “watch and wait” scenario if the T-cell count is robust and the viral load is relatively low (parameters vary according to clinician philosophy and experience). Once the T-cell count drifts below 300 cells (or if the viral load indicates the necessity for antiretroviral drugs even with a higher T-cell count), the patient should receive instructions in current antiretroviral care, complementary and alternative care coordination, and the necessity of adherence to the antiretroviral protocol, as well as the necessity for frequent health care follow-up and continuous exposure to an interdisciplinary care team to coordinate care services as the trajectory evolves.
Palliative care of patients with AIDS includes the notion of seamless care. As patients exhaust options or immunosuppression worsens, clinicians must focus on quality of life issues while managing chronic debilitating conditions, opportunistic infections, and superimposed primary infections. Such issues might entail the need for blood transfusions, ongoing intravenous therapy to prevent complications such as blindness from CMV retinitis, and short-term aggressive curative therapies (often in the acute care setting)—all of which are treated while keeping in mind the overall health care desires of the patient. Hospice referral should be considered when consistent with the patient’s goals. The criteria for hospice admission for a patient with HIV/AIDS often include the following guidelines (National Hospice and Palliative Care Organization [NHPCO], 1996): (1) CD4 count <25 cells, (2) persistent viral load >100,000 copies, and (3) presence of at least one of the following: central nervous system lymphoma, progressive multifocal leukoencephalopathy, cryptosporidium infection, wasting (the loss of 33% of lean body mass), MAC bacteremia, visceral Kaposi’s sarcoma, renal failure in the absence of dialysis, advanced AIDS dementia complex, or toxoplasmosis. Additionally, the presence of any of the following is further support that a hospice admission is appropriate and should be documented: persistent diarrhea, serum albumin <2.5, concomitant substance abuse, age greater than 50 years, absence of HAART, or congestive heart failure.
In the light of these rather stringent criteria, the primary reason for denial of hospice services entails the patient being on antiretroviral drugs without documented decline in status over time. In some instances, the patient is introduced to HAART as a palliative therapy and actually improves dramatically. In such cases, if the patient warrants further hospice care, a change in the terminal diagnosis from HIV/AIDS to another diagnostic cause, such as wasting or failure to thrive, may be indicated.
SYMPTOM MANAGEMENT AND TREATMENT
In people with HIV/AIDS, there are a number of common symptoms that require palliative interventions to improve quality of life (Center for Palliative Care Education, 2003; Kirton, 2001; Sherman, 2001). Table 16-2 identifies interventions for the most common symptoms seen in patients with HIV/AIDS.
| Retrieved October 25, 2005, from http://aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf; Kirton, C.A. (2001). Guidelines for initiation of antiretroviral therapy. In C.A. Kirton, D. Talotta, & K. Zwolski (Eds.). Handbook of HIV/AIDS nursing (pp.65-82). St. Louis: Mosby; and Sherman, D.W. (2001). Patients with acquired immune deficiency syndrome. In B.R. Ferrell & N. Coyle (Eds.). Textbook of palliative nursing (pp.467-500). New York: Oxford University Press. | |
| Fatigue | Treat underlying causes, when possible. |
| Obtain a dietary consult. | |
| Encourage naps, cool room temperatures, warm rather than hot showers and baths, relaxation exercises. | |
| Consider the use of oral dextroamphetamine. | |
| Anorexia or cachexia | Treat underlying causes, when possible. |
| Obtain a dietary consult. | |
| Make food appealing in appearance. | |
| Avoid noxious odors. | |
| Avoid fatty and strong smelling foods. | |
| Encourage patient to eat whatever food is appealing. | |
| Provide small, frequent meals with snacks. | |
| Encourage high protein–high energy liquid supplements. | |
| Consider appetite stimulants. | |
| Fever | Treat reversible causes, when possible. |
| Maintain fluid intake. | |
| Encourage patient to wear loose clothing and change bed linens frequently if diaphoresis is present. | |
| Use antipyretics around the clock. | |
| Consider cool compresses, ice packs, or cooling blankets if these provide comfort and do not lead to chilling. | |
| Dyspnea | Treat reversible causes, such as bronchospasm. |
| Elevate head of bed. | |
| Provide humidified oxygen therapy, when appropriate. | |
| Encourage the use of fans or open windows. | |
| Remove irritants. | |
| Teach pursed-lip breathing. | |
| Encourage frequent mouth care. | |
| Suppress cough. | |
| Consider use of nebulized lidocaine for hyperactive gag reflex. | |
| Nausea and vomiting | Treat underlying causes, when possible. |
| Use antiemetics. | |
| If on opioid therapy, consider changing to a different opioid. | |
| Dehydration | Encourage oral fluids, as tolerated. |
| Consider intravenous or subcutaneous (hypodermoclysis) fluids. | |
| Constipation | Increase oral fluids, as tolerated. |
| Increase dietary fiber, if sufficient oral intake. | |
| Institute a bowel protocol using stimulant and softening laxatives. | |
| Urinary incontinence | Determine need for intermittent self-catheterization or insertion of indwelling Foley catheter. |
| Teach good skin care to prevent skin breakdown. | |
| Cough | Treat underlying causes. |
| Use cough suppressants (may include opioids). | |
| Decubitus ulcers | Teach or provide fastidious skin care. |
| Consult a wound care specialist, as appropriate. | |
| Delirium, dementia | Assess and treat reversible causes as appropriate (e.g., hydration and electrolyte replacement). |
| Evaluate current pharmacotherapeutic agents. | |
| Institute safety precautions. | |
| Consider sliding scale haloperidol for delirium; chlorpromazine may be used if haloperidol is not effective (newer agents, such as risperidone and olanzapine, have demonstrated effectiveness as well). | |
| Diarrhea | Treat underlying cause, when possible. |
| Maintain hydration, replace electrolytes, and increase protein and calorie intake, as tolerated. | |
| Ensure access to bathroom or commode. | |
| Maintain good perianal care. | |
| Administer antidiarrheal medications (see Chapter 26). | |
| Insomnia | Reduce daytime napping. |
| Avoid caffeine and alcohol. | |
| Encourage a warm bath before bed. | |
| Teach relaxation techniques. | |
| Promote a dark, quiet environment. | |
| Consider anxiolytics, antidepressants, or sedatives as appropriate. | |
| Pain or discomfort | Treat pain and other discomforts, recognizing that pain may be multifocal and involve functional as well as psychological morbidities. |
| Prevent or treat uncomfortable side effects of opioids or other medications. | |
| Depression, anxiety, fear or spiritual distress | Assess for depression, generalized anxiety disorder, mood disorders, and substance abuse. |
| Consider antidepressants. | |
| Foster support groups, psychological growth, and feelings of self-acceptance and personal worth. | |
| Assess for fear, loneliness, or spiritual distress. | |
ADVANCE CARE PLANNING
Advance care planning should be initiated as early in the disease as possible. This process continues throughout the course of the illness because the patient’s wishes may change over time. Advanced care planning for the patient with HIV disease should entail a minimum of the following (Sherman, 2001):
1. Foster communication regarding life-preserving measures and wishes.
2. Discuss benefits of social support programs.
3. Have health care power of attorney in place as early as possible.
4. In the event of joint ownership of property, have a will prepared and updated that designates legally binding beneficiaries.
5. Discuss preferences regarding who is to be present at time of death, how the body is to be prepared, and the type of funeral and/or memorial service desired.
6. Discuss where donations should be sent at the time of death, as appropriate.
7. Provide assistance to survivors in terms of bereavement and related support groups.
CONCLUSION
The diagnosis of HIV/AIDS is a physically, emotionally, and spiritually burdensome condition for the patient, the family, and other significant support systems. The use of HAART has greatly increased survival but has introduced drug-related side effects that often compromise quality of life. Overall, those infected with HIV/AIDS are relatively young in age. Palliative care issues include the need for impeccable symptom management, as well as psychosocial and spiritual support to deal with issues related to death, dying, and advance care planning. All of the resources of the interdisciplinary team are vital for maximizing quality of life and palliation of symptoms.
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