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Patients with acquired immunodeficiency syndrome 

Patients with acquired immunodeficiency syndrome
Patients with acquired immunodeficiency syndrome

Carl A. Kirton

and Deborah Witt Sherman

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Subscriber: null; date: 19 January 2019

I thought like so many of my friends that I would die young well before my time. There were moments that I was hanging on by just a thread. When I could not eat or drink, I became like a walking skeleton. On the AIDS unit, some other patients asked that I not walk around because I was too scary looking. Thank God, the protease inhibitors were discovered. They pulled me back from the edge of death. Over the years, I have changed my AIDS medication many times, but learned to live a healthier life to give me the best chances of staying well. I am just grateful to be alive. People are no longer as afraid of me when they know I am HIV positive. This disease changed my life, a horrible illness through which I have been transformed in many ways.

Anonymous patient

Key points

  • With HIV/AIDS, the severity, complexity, and unpredictability of the illness trajectory have blurred the distinction between curative and palliative care.

  • The focus of AIDS care must be on improving quality of life by providing care for the management of pain and other symptoms, while addressing the emotional, social, and spiritual needs of patients and their families throughout the illness trajectory.

  • With up-to-date knowledge regarding HIV disease, including changes in epidemiology, diagnostic testing, treatment options, and available resources, nurses can offer effective and compassionate care to patients and families at all stages of HIV disease.

In 30+ years, AIDS has escalated from a series of outbreaks in scattered communities in the United States and Europe to a global health crisis. Although the biomedical paradigm of antiretroviral therapy has significantly reduced the mortality from HIV in the developed world and has transformed AIDS into a manageable chronic illness, the reality in developing countries is that people are not “living with AIDS” but, rather, “dying from AIDS” because of a lack of access to medications and appropriate healthcare.1 In the late stages of HIV, there is a false dichotomy created between disease-specific, curative therapies and symptom-specific palliative therapies.2 It is now realized that the palliation of pain, symptoms, and suffering must occur throughout the course of a life-threatening disease, not just in the final stages near the end of life. AIDS has stimulated the need to evaluate clinical practice when curative and palliative care interface. No longer should there be an abrupt demarcation between palliative care and treating disease in individuals with life-threatening, progressive illnesses.3 Both the public and health professionals have been troubled by the reality of over- and undertreatment of pain and symptoms in individuals with life-threatening illnesses who may suffer severe, unremitting pain in their final days.4 Such concern extends to the care of patients with HIV and the resultant illness of AIDS because no cure has yet been found. Therefore, the focus of care must be on improving quality of life by providing palliative care for the management of pain and other physical symptoms while addressing the emotional, social, and spiritual needs of patients and their families throughout the illness trajectory. Although current therapies have increased the life expectancy of people with HIV/AIDS, the chance of experiencing symptoms related not only to the disease but to the effects of therapies also increases. Furthermore, palliative measures can be beneficial in ensuring tolerance of and adherence to difficult pharmacological regimens.5

Because patients are surviving longer in the latter stages of illness, an integrated model must be developed to provide comprehensive care for patients with advanced AIDS and their families.5 This chapter provides an overview and update of the comprehensive care related to HIV/AIDS and addresses the palliative care needs of individuals and families living with and dying from this illness. With this information, nurses and other healthcare professionals will gain the knowledge to provide effective and compassionate care, recognizing the need for both curative and aggressive care as well as supportive and palliative therapies to maximize the quality of life of patients and their family caregivers.

Incidence of HIV/AIDS

HIV/AIDS is a worldwide epidemic affecting more than 34 million people. An estimated 2.5 million acquired HIV in 2011, and an estimated 1.7 million people died from AIDS.6 In the United States an estimated 1.1 million people are living with HIV infection (CDC, 2013). HIV incidence has remained relatively stable in the United States at about 50,000 infections per year since the mid-1990s. Certain groups, including African Americans, Latinos, and gay and bisexual men of all races/ethnicities, still continue to be disproportionately affected.7

Historical background of HIV/AIDS

In the early 1980s, cases were reported of previously healthy homosexual men who were diagnosed with Pneumocystis carinii (now known as Pneumocystis jiroveci) pneumonia and an extremely rare tumor known as Kaposi’s sarcoma (KS). The number of cases doubled every 6 months, with further occurrence of unusual fungal, viral, and parasitic infections, and researchers realized that the immune systems of these individuals were being compromised. Over time, reports began to emerge of the appearance of similar unusual infections and immune system destruction beyond the homosexual community. This new disease was also seen among heterosexual partners, IV substance users, persons with hemophilia, individuals receiving infected blood products, and children born to women with the disease.

Origins of HIV can be traced through serum studies to 1959, when crossover mechanisms between humans and primates via animal bites or scratches in Africa led to HIV transmission. In 1981, the virus was identified and named lymphadenopathy-associated virus (LAV). By 1984, the term had been changed to human T-lymphocytic virus type III (HTLV-III), and in 1986 renamed the human immunodeficiency virus type 1 (HIV-1). HIV-1 accounts for nearly all the cases reported in the United States, whereas a second strain, HIV-2, accounts for nearly all the cases reported in West Africa. During 1988, a total of 242 HIV-2 cases were reported to the Centers for Disease Control and Prevention (CDC). Of these, 166 met the working definition. These HIV-2 cases were concentrated in the Northeast (66%, including 46% in New York City) and occurred primarily among persons born in West Africa (81%).8

Globally, AIDS is characterized as a dynamic epidemic that has spread to every continent in the world and has multiple and varied socioeconomic, cultural, and political dimensions. To date, the following scientific progress has been made in combating the infection: (1) the virus has been identified; (2) improved and easier methodologies for screening for HIV infection have been implemented; (3) vaccines have been tested; (4) biological and behavioral cofactors have been identified related to infection and disease progression; (5) prophylactic treatments are available to prevent opportunistic infections; (6) quantitative assays are readily available to measure viral replication and have become a standard measure to evaluate the response of the disease to treatment; (7) better and simpler treatments exists to treat HIV disease and have raised life expectancy; and (8) international collaborations have provided HIV treatments in many underdeveloped nations.

HIV pathogenesis and classification

Like all viruses, the HIV virus survives by reproducing itself in a host cell, usurping the genetic machinery of that cell, and eventually destroying the cell. The HIV is a retrovirus whose life cycle consists of (1) attachment of the virus to the cell, which is affected by cofactors that influence the virus’s ability to enter the host cell; (2) uncoating of the virus; (3) reverse transcription by an enzyme called reverse transcriptase, which converts two strands of viral RNA to DNA; (4) integration of newly synthesized proviral DNA into the cell nucleus, assisted by the viral enzyme integrase, which becomes the template for new viral components; (5) transcription of proviral DNA into messenger RNA; (6) movement of messenger RNA outside the cell nucleus, where it is translated into viral proteins and enzymes; and (7) assembly and release of mature virus particles out of the host cell.9

These newly formed viruses have an affinity for any cell that has the CD4 molecule on its surface, such as T lymphocytes and macrophages, which become major viral targets. Because CD4 cells are the master coordinators of the immune system response, chronic destruction of these cells severely compromises individuals’ immune status, leaving the host susceptible to opportunistic infections and eventual progression to AIDS.

HIV and AIDS are not synonymous terms but, rather, refer to the natural history or progression of the infection, ranging from asymptomatic infection to life-threatening illness characterized by opportunistic infections and cancers. The end of the continuum of the illness is associated with a marked decrease in CD4 cell count and a rise in HIV-RNA viral load (VL).

The natural history of HIV infection begins with primary or acute infection. This occurs when the virus enters the body and replicates in large numbers in the blood. This leads to an initial decrease in the number of CD4 cells. Viral load climbs during the first 2 weeks of the infection. Within 5 to 30 days of infection, the individual may experience a flu-like symptom characteristic of a viremia such as fever, sore throat, skin rash, lymphadenopathy, and myalgia. Other manifestations of primary HIV infection include fatigue, splenomegaly, anorexia, nausea and vomiting, meningitis, retro-orbital pain, neuropathy, and mucocutaneous ulceration.9 The production of HIV antibodies results in seroconversion, which generally occurs within 6 to 12 weeks of the initial infection. The amount of virus present after the initial viremia and the immune response is called the viral set-point.

Clinical latency refers to the chronic, clinically asymptomatic state in which there is a decreased VL and resolution of symptoms of the primary infection. During this period there is continuous viral replication in the lymph nodes at the rate of more than 10 billion copies of the virus made every day. It is for this reason that early medical intervention with combination antiretroviral therapy is recommended.10 Al-Harthi et al.11 demonstrated that when antiretroviral therapy is used as an early intervention in nonacute HIV infection, it potentially reverses immune-mediated damage.

The early symptomatic stage occurs after years of infection and is apparent by conditions indicative primarily of defects in cell-mediated immunity. Early symptomatic infection generally occurs when CD4 counts fall below 500 cells/mm3. In the absence of effective treatment, there are frequently mucosal clues, ranging from oral candidiasis and hairy leukoplakia to ulcerative lesions. Gynecological infections are the most common reasons women have a medical examination. There are also dermatological manifestations, which include bacterial, fungal, viral, neoplastic, and other conditions such exacerbation of psoriasis, severe pruritus, or the development of recurrent pruritic papules.

The late symptomatic stage begins when the CD4 count drops below 200 cells/mm3. This CD4 level is recognized by the CDC as meeting the case definition for AIDS. In the absence of effective treatments, opportunistic infections or cancers characterize this stage and result in multiple symptoms. In addition to such illnesses as KS, Pneumocystis jiroveci pneumonia, HIV encephalopathy, and HIV wasting, diseases such as pulmonary tuberculosis, recurrent bacterial infections, and invasive cervical cancer are sometimes seen. The advanced HIV disease stage occurs when the CD4 cell count drops below 50 cells/mm3. In the absence of treatment common conditions seen are central nervous system (CNS) non-Hodgkin’s lymphoma, KS, cytomegalovirus (CMV) retinitis, or Mycobacterium avium complex (MAC). In the late stages of the disease, most individuals have health problems such as pneumonia, oral candidiasis, depression, dementia, skin problems, anxiety, incontinence, fatigue, isolation, bed dependency, wasting syndrome, and significant pain.12 Research regarding AIDS patients experiencing advanced disease confirms the multitude of patient symptoms and factors that contribute to mortality. In a study of 230 patients with advanced AIDS referred to a large urban medical center over a median of 126 days, 120 patients died; 54% of these died of late-stage HIV disease and/or bacterial pneumonia or sepsis, 19% of non-AIDS-defining cancers, 13% of liver failure and/or cirrhosis, and 12% of other progressive end-organ disease (e.g., cardiac, pulmonary, renal). On multivariate analysis, death was predicted only by age (>65 years), baseline number of ADL impairments, and Karnofsky score (P < 0.0001 for all) and not by any AIDS-specific variables.13 Given the large number of both pre-HAART (highly active antiretroviral therapy) era and post-HAART era symptoms in AIDS, it is worth a review of the prevalent symptoms. The five most prevalent symptoms reported among AIDS patients are fatigue, weight loss, pain, anorexia, and anxiety. Other less prevalent symptoms include insomnia, cough, nausea/vomiting, dyspnea, depression, diarrhea, and constipation.14

Palliative care as a natural evolution in HIV/AIDS care

From the earliest stages of HIV disease, symptom control becomes an important goal of medical and nursing care to maintain the patient’s quality of life. Therefore, palliative care for patients with HIV/AIDS should be viewed not as an approach to care only in the advanced stage of the illness but as an aspect of care that begins in the early stage of illness and continues as the disease progresses.5

With the occurrence of opportunistic infections, specific cancers, and neurological manifestations, AIDS involves multiple symptoms not only from the disease processes but also from the side effects of medications and other therapies. Patients with AIDS present with complex care issues because they experience bouts of severe illness and debilitation alternating with periods of symptom stabilization.15 In one model of care, AIDS palliation begins when active treatment ends. Although this model limits service overlap and is economical, it creates not only the ethical issue of when to shift from a curative to a palliative focus but also promotes discontinuity of care and possible discrimination. Conversely, a second model of AIDS care recognizes that AIDS treatment is primarily palliative, directed toward minimizing symptoms and maximizing the quality of life, and necessitates the use of antiretroviral drugs, treatment of infections and neoplasms, and provision of high levels of support to promote the patient’s quality of life over many years of the illness.16 Selwyn and Rivard17 emphasize that although AIDS is no longer a uniformly fatal disease, it is an important cause of mortality, particularly for ethnically diverse populations with comorbidities such as hepatitis B and C, end-organ failure, and various malignancies. Further, Shen, Blank, and Selwyn18 conducted a study based on patients (n = 230) in a large urban New York medical center who had been referred to the HIV palliative care team. They reported that close to half of all deaths for these patients were attributable to non-AIDS-specific causes, including cancer and end-organ failure. Further, age and markers of functional status were more predictive of mortality than traditional HIV prognostic variables, suggesting the need to reconsider the current value of prior prognostic variables.

Although thousands of individuals continue to suffer and die from AIDS, the division between curative-aggressive care and supportive-palliative care is less well defined and more variable than in other life-threatening illnesses such as cancer. With HIV/AIDS, the severity, complexity, and unpredictability of the illness trajectory have blurred the distinction between curative and palliative care. Other continuing challenges associated with HIV/AIDS are the societal stigmatization of the disease and, therefore, the greater emotional, social, and spiritual needs of those experiencing the illness, as well as their family and professional caregivers, who experience their own grief and bereavement processes.

Palliative care is therefore a natural evolution in AIDS care. Core issues of comfort and function, which are fundamental to palliative care, must be addressed throughout the course of the illness and may be concurrent with restorative or curative therapies for persons with AIDS. The management decisions for patients with advanced AIDS revolve around the ratio between benefits and burdens of the various diagnostic and treatment modalities and the patient’s expectations and goals, as well as anticipated problems. In the face of advanced HIV disease, healthcare providers and patients must determine the balance between aggressive and supportive efforts, particularly when increasing debility, wasting, and deteriorating cognitive function are evident. At this point, the complex needs of patients with HIV/AIDS and the needs of their families require the coordinated care of an interdisciplinary palliative care team, involving physicians, advanced practice nurses, staff nurses, social workers, dietitians, physiotherapists, and clergy. Because in palliative care the unit of care is the patient and family, the palliative care team offers support not only for patients to live as fully as possible until death but also for the family to cope during the patient’s illness and in their own bereavement.19 Palliative care core precepts of respect for patient goals, preferences, and choices; comprehensive caring; and acknowledgment of caregivers’ concerns support the holistic and comprehensive approach to care needed by individuals and families with HIV/AIDS. The components of high-quality HIV/AIDS palliative care, as identified by healthcare providers, include competent, skilled practitioners; confidential, nondiscriminatory, culturally sensitive care; flexible and responsive care; collaborative and coordinated care; and fair access to care.19

Barriers to palliative care

The neglect of the palliative care needs of patients with HIV also relates to certain barriers to care, such as reimbursement issues. Specifically, public and private third-party payers have reimbursed end-of-life care only when physicians have verified a life expectancy of less than 6 months to live. Beyond six months, patients must be classified as terminal by a licensed provider as terminal to continue to receive services and eligible for comprehensive care, with control of pain and other symptoms along with psychological and spiritual support offered by hospice/palliative care. Without a terminal diagnosis patients may be discharged from hospice care. Additionally, long-term cost of HIV medications and other therapies may outpace monthly reimbursement. HIV treatments range from $2000–$5000 monthly.

An additional barrier to palliative care use is that HIV is now seen as a chronic illness. Although palliative care is appropriate throughout the trajectory of a disease, the current emphasis is on beginning palliative care only at the end of life. A review of the evidence of barriers and inequality in HIV care by Simms et al.20 found that there is increased complexity in the balance of providing concurrent curative and palliative therapies given the prolongation of life span as a result of antiretroviral therapy. Simms and colleagues believe that palliative care should not solely be associated with terminal care and propose four recommendations:

  1. 1. The need for multidimensional palliative care assessment for differing populations;

  2. 2. Basic palliative care skills training for all clinical staff in standard assessments;

  3. 3. Development of referral criteria and systems for patients with complex palliative care needs; and

  4. 4. The availability of specialist consultation across all settings.

Criteria for palliative care

The need for palliative care of patients with HIV care has evolved since the start of the epidemic. Traditional criteria such as decrease in functional ability, declining CD4 count and rising VL, and history of opportunistic infections were important drivers of worsening disease and perhaps end-of-life, indicating the need for palliative interventions. The complex needs of patients with HIV also indicate the need for an interdisciplinary approach to care offered by palliative and hospice care early in the course of the disease. The continual review of hospice policies in accordance with the changes in the disease is encouraged. Indeed, developing different models of care, such as enhanced home care, hospice care, day care, or partnerships with community hospitals or agencies, and conducting cost-benefit analyses will be important in meeting the healthcare needs of patients with AIDS and their families in the future.

Important advances are currently being made in the field of palliative medicine and nursing, involving an active set of behaviors that continue throughout the caregiving process to manage the pain and suffering of individuals with HIV/AIDS. Health professionals have the responsibility to be knowledgeable about the various treatment options and resources available for pain and symptom management. They must know about pharmacological agents’ actions, side effects, and interactions, as well as alternative routes of medication administration. And they must be able to inform patients of their options for care—documenting their preferences, wishes, and choices; performing a complete history and physical assessment; and collaborating with other members of the interdisciplinary team to develop and implement a comprehensive plan of care.19

Health promotion and maintenance in promoting the quality of life of persons with HIV/AIDS

As palliative care becomes an increasingly important component of AIDS care from diagnosis to death, and given the definition of palliative care as the comprehensive management of the physical, psychological, social, spiritual, and existential needs of patients with incurable progressive illness, palliative care must involve ongoing prevention, health promotion, and health maintenance to promote the patient’s quality of life throughout the illness trajectory.19 With HIV/AIDS, health promotion and maintenance involves promoting behaviors that will prevent or decrease the occurrence of opportunistic infections and AIDS-indicator diseases, promoting prophylactic and therapeutic treatment of AIDS-indicator conditions and preventing behaviors that promote disease expression.

With no current cure, the health management of patients with HIV/AIDS is directed toward controlling HIV disease and prolonging survival while maintaining quality of life. Quality of life may be defined as the impact of sickness and healthcare on an ill person’s daily activities and sense of well-being.21,22 Furthermore, quality of life varies with disease progression from HIV to AIDS. To understand quality of life means to understand the patient’s perceptions of his/her ability to control the physical, emotional, social, cognitive, and spiritual aspects of the illness. Quality of life is therefore associated with health maintenance for individuals with HIV/AIDS, particularly as it relates to functioning in activities of daily living, social functioning, and physical and emotional symptoms.23 In a study regarding the functional quality of life of 142 men and women with AIDS, Vosvick and colleagues24 concluded that maladaptive coping strategies were associated with lower levels of energy and social functioning and that severe pain interfered with daily living tasks and was associated with lower levels of functional quality of life (physical functioning, energy/fatigue, social functioning, and role functioning). Therefore, health promotion interventions should be aimed at developing adaptive coping strategies and improving pain management.

Health promotion in HIV/AIDS

Health promotion and maintenance for patients with HIV/AIDS must acknowledge patients’ perceived healthcare needs. Based on a study of 386 HIV-infected persons, it was determined that the healthcare challenges perceived by patients with HIV/AIDS across hospital, outpatient, home, and long-term care settings included decreased endurance and physical mobility, changes in sensory perception, and financial issues—specifically lack of income and resources to cover living and healthcare expenses.25 Furthermore, based on a sample of 162 hospitalized men and women with AIDS, Kemppainen26 reported that the strongest predictor of decreased quality of life was depression, which accounted for 23% of the variance, with other symptoms accounting for 9.75% and female gender accounting for an additional 8%. Additionally, active involvement in the process of nursing care contributed 13.4% to the variance in quality of life. These results indicate the healthcare challenges and physical, emotional, and interactional needs of patients with AIDS. In addition to managing pain and other symptoms, a comprehensive and compassionate approach to care is necessary as the illness progresses. Furthermore, enhancing immunocompetence is critical at all stages of illness, as is treating the symptoms brought on by the disease or related to prophylactic or treatment therapies. Palliation of physical, emotional, and spiritual symptoms—particularly as experienced in the late symptomatic and advanced stages of HIV disease—is considered the final stage of a health-and-disease-prevention approach and will be discussed later in this chapter.

Through all stages of HIV, health can be promoted and maintained through diet, micronutrients, exercise, reduction of stress and negative emotions, symptom surveillance, and the use of prophylactic therapies to prevent opportunistic infections or AIDS-related complications.


A health-promoting diet is essential for optimal function of the immune system. Deficiencies in calorie and protein intake impair cell-mediated immunity, phagocytic function, and antibody response. Therefore, an alteration in nutrition is associated with impaired immune system function, secondary infections, disease progression, psychological distress, and fatigue. In patients with AIDS, common nutritional problems are weight loss, vitamin and mineral deficiencies, loss of muscle mass, and loss or redistribution of fat mass. The redistribution of fat is characterized by increased abdominal girth, loss of fat from the face, and a “buffalo hump” on the back of the neck, which may result from the administration of antiretroviral therapy.27 Patients with HIV/AIDS often have reduced food or caloric intake, malabsorption, and altered metabolism. Reduced food or caloric intake frequently results from diseases of the mouth and oropharynx, such as oral candidiasis, angular cheilitis, gingivitis, herpes simplex, and hairy leukoplakia. Metabolic alterations may result from HIV infection or secondary infections, as well as abnormalities in carbohydrate, fat, and protein metabolism. A good diet is one of the simplest ways to delay HIV progression and will bolster immune system function and energy levels and help patients live longer and more productive lives.28,29 Recommended protein intake is 1.25–1.5 g/kg of body weight; recommended energy intake (calories from protein, carbohydrate, and fat) is 25 kcal/kg of body weight.30


Adequate nutritional intake is considered an important part of the clinical care of patients with HIV. Early HIV research indicated that HIV-infected individuals with lower levels of micronutrients had faster disease progression and mortality.31 However, a recent meta-analysis based on fourteen small trials, evaluating different macronutrient supplements, found limited evidence that balanced macronutrient formulas increase protein and energy intake and no evidence that such supplementation translates into reductions in disease progression or HIV-related complications, such as opportunistic infections or death.32 While micronutrient supplementation has not been demonstrated to affect clinical outcomes, clinicians should encourage a balanced and adequate nutritional intake throughout the course of the disease.

Exercise and massage

Exercise is considered an essential part of health maintenance, and it is hypothesized that exercise has a beneficial effect on immune function and overall health. A meta-analysis of 14 studies concluded that aerobic and resistive exercise, both alone and in combination, were associated with increased muscle mass (1.1 to 6.9 kg) and improvements in cardiovascular fitness and depression; improvements were contingent on adhering to an activity regimen for a minimum of 20 minutes/day, 3 days/week for 5 weeks. No adverse effects or immunological or virological parameters were found.33 Resistive exercise alone for 16 weeks has been shown to increase lean body mass and muscle strength and to reduce serum triglycerides.34 Furthermore, there is some evidence to support the use of massage therapy to improve quality of life for people living with HIV/AIDS (PLWHA), particularly in combination with other stress-management modalities, and that massage therapy may have a positive effect on immunological function.35

Stress and emotions

Stress and negative emotions have also been associated with immunosuppression and vulnerability to disease. In a study of 96 HIV-infected homosexual men without symptoms or antiretroviral medication use, Leserman and colleagues36 reported that higher cumulative average stressful life events, higher anger scores, lower cumulative average social support, and depressive symptoms were all predictive of a faster progression to both the CDC AIDS classification and a clinical AIDS condition. Stress of living with HIV/AIDS is related to the uncertainty regarding illness progression and prognosis, stigmatization and discrimination, and financial concerns as disabilities increase with advancing disease.37 Persons with AIDS frequently cite the avoidance of stress as a way of maintaining a sense of well-being.38 The use of exercise and massage and other relaxation techniques, such as imagery, meditation, and yoga, have been reported as valuable stress-management techniques.39 Cognitive-behavioral interventions have also been shown to improve certain aspects of quality of life, emotional status, and CD4 cell counts.40

Health promotion also involves health beliefs and coping strategies that support well-being despite protracted illness. Long-term survivors used numerous strategies to support their health, such as having the will to live and positive attitudes, feeling in charge, maintaining a strong sense of self and a sense of humor, and expressing their needs. Other health-promotion strategies frequently used by these patients included remaining active, seeking medical information, talking to others, socializing and pursuing pleasurable activities, finding good medical care, and seeking counseling.41 Stress can also be associated with the financial issues experienced by patients with HIV/AIDS. Therefore, health promotion may involve financial planning, identification of financial resources available through the community, and public assistance offered through Medicaid.

It must also be recognized that additional physical and emotional stress is associated with the use of recreational drugs such as alcohol, chemical stimulants, tobacco, and marijuana because these agents have an immunosuppressant effect and may interfere with health-promoting behaviors.42,43 The use of such substances may have a negative effect on interpersonal relationships and is associated with a relapse to unsafe sexual practices.43 Interventions for health promotion include encouraging patients to participate in self-health groups and harm-reduction programs to deal with substance abuse problems.

Symptom surveillance

Throughout the course of their illness, individuals with HIV require primary care services to identify early signs of opportunistic infections and to minimize related symptoms and complications. This includes a complete health history, physical examination, and laboratory data, including determination of immunological and viral status.

Health history

In the care of patients with HIV/AIDS, the health history should include the following:

  • History of present illness, including a review of those factors that led to HIV testing

  • Medical history, particularly those conditions that may be exacerbated by HIV or its treatments, such as diabetes mellitus, hypertriglyceridemia, or chronic or active hepatitis B infection

  • Childhood illnesses and vaccinations for preventing common infections, such as polio, diphtheria, pertussis, and tetanus (DPT), or measles

  • Medication history, including the patient’s knowledge of the types of medications, side effects, adverse reactions, drug interactions, and administration recommendations

  • Sexual history, regarding sexual behaviors and preferences and history of sexually transmitted diseases, which can exacerbate HIV progression

  • Lifestyle habits, such as the past and present use of recreational drugs, including alcohol, which may accelerate progression of disease, or cigarette smoking, which may suppress appetite or be associated with opportunistic infections such as oral candidiasis, hairy leukoplakia, and bacterial pneumonia

  • Dietary habits, including risks related to food-borne illnesses such as hepatitis A

  • Travel history to countries in Asia, Africa, and South America, where the risk of opportunistic infections increases

  • Complete systems review to provide indications of clinical manifestations of new opportunistic infections or cancers, as well as AIDS-related complications both from the disease and its treatments

Physical examination

A physical exam should begin with a general assessment of vital signs and height and weight, as well as overall appearance and mood. A complete head-to-toe assessment is important and may reveal various findings common to individuals with HIV/AIDS, including those mentioned below.

  • Oral cavity assessment may indicate candida, oral hairy leukoplakia, or KS.

  • Funduscopic assessment may reveal visual changes associated with CMV retinitis; glaucoma screening is also recommended.

  • Lymph node assessment may reveal adenopathy, detected at any stage of disease.

  • Dermatological assessment may indicate various cutaneous manifestations that occur throughout the course of the illness such as HIV exanthema, KS, or infectious complications such as dermatomycosis.

  • Neuromuscular assessment may indicate various disorders of the central, peripheral, or autonomic nervous systems and signs and symptoms of conditions such as meningitis, encephalitis, dementia, or peripheral neuropathies.

  • Cardiovascular assessment may reveal cardiomyopathy.

  • Gastrointestinal (GI) assessment may indicate organomegaly—specifically splenomegaly or hepatomegaly—particularly in patients with a history of substance abuse, as well as signs related to parasitic intestinal infections; annual stool guaiac and rectal examination, as well as sigmoidoscopy every 5 years, are also parts of health maintenance.

  • Reproductive system assessment may reveal occult sexually transmitted diseases or malignancies and vaginal candidiasis, cervical dysplasia, pelvic inflammatory disease, or rectal lesions in women with HIV/AIDS. Assessments may also reveal urethral discharge and rectal lesions or malignancies in HIV-infected men. Health maintenance in individuals with HIV/ AIDS also includes annual mammograms in women, as well as testicular exams in men and prostate-specific antigen screening annually.

Laboratory data

Evaluation of laboratory data are important in assisting health practitioners in making therapeutic decisions. The following laboratory tests performed during initial patient visits can be used to stage HIV disease and in the selection of antiretroviral therapy:44

  • HIV antibody testing (if prior documentation is not available or if HIV RNA is below the assay’s limit of detection);

  • CD4 T-cell count (CD4 count);

  • Plasma HIV RNA (VL);

  • Complete blood count, chemistry profile, transaminase levels, blood urea nitrogen (BUN), and creatinine, urinalysis, and serologies for hepatitis A, B, and C viruses;

  • Fasting blood glucose and serum lipids; and

  • Genotypic resistance testing at entry into care, regardless of whether antiretroviral therapy will be initiated immediately. For patients who have HIV RNA levels <500 to 1,000 copies/mL, viral amplification for resistance testing may not always be successful.

The DHHS’s Panel on Clinical Practices for the Treatment of HIV44 recommends that the CD4 count and the VL be measured upon entry into care and every 3–6 months subsequently. Immediately before a patient is started on antiretroviral therapy, the patient’s HIV-RNA (VL) should be measured, and again 2–8 weeks after treatment is initiated, to determine the effectiveness of the therapy. With adherence to the medication schedule, it is expected that the HIV-RNA will decrease to undetectable levels (<50 copies/mL) in 16–24 weeks after the initiation of therapy. If a patient does not significantly respond to therapy, the clinician should evaluate adherence, repeat the test, and rule out malabsorption or drug-drug interactions.

The decision regarding laboratory testing is based on the stage of HIV disease, the medical processes warranting initial assessment or follow-up, and consideration of the patient benefit-to-burden ratio. Complete blood counts are often measured with each VL determination or with a change of antiretroviral therapy, particularly with patients on drugs known to cause anemia. Chemistry profiles are done to assess liver function, lipid status, and glycemia every 3–6 months or with a change in therapy, and are determined by the patient’s antiretroviral therapy, baseline determinations, and coinfections. Abnormalities in these profiles may occur as a result of antiretroviral therapy. Increasing hepatic dysfunction is evident by elevations in the serum transaminases (AST, ALT, T. bilirubin). Blood work should also include hepatitis C serology (antibody), hepatitis B serology, and Toxoplasma IgG serology.

Urine analysis should be done annually unless the person is on antiretroviral therapy, which may require more frequent follow-up to check for toxicity. Syphilis studies should be done annually; however, patients with low positive titers should have follow-up testing at 3, 6, 9, 12, and 24 months. Gonorrhea and chlamydia tests are encouraged every 6–12 months if the patient is sexually active. Annual Papanicolaou (Pap) smears are also indicated, with recommendations for Pap smears every 3–6 months in HIV-infected women who are symptomatic. In addition, HIV-infected persons should be tested for IgG antibody to Toxoplasma soon after the diagnosis of HIV infection to detect latent infection with Toxoplasma gondii. Toxoplasma seronegative persons who are not taking a Pneumocystis jiroveci prophylactic regimen known to be active against Toxoplasma encephalitis (TE) should be retested for IgG antibody to Toxoplasma when their CD4+ counts decline to <100 cells/mm3 to determine whether they have seroconverted and are therefore at risk of TE.45

Individuals should be tested for latent tuberculosis infection (LTBI) at the time of their HIV diagnosis, regardless of their TB risk category, and then annually if negative. An LTBI diagnosis can be achieved with the use of tuberculin skin test (TST) or by or interferon gamma release assay (IGRA) using the patient’s serum. A TST is considered positive in patients with induration of greater than or equal to 5 mm. An IGRA is reported as positive or negative. Any positive test warrants chest radiograph for active disease and consideration of antituberculosis therapy based on history and laboratory, physical, and radiographic findings.


The primary strategy to prevent the development of opportunistic infections is to avoid exposure to microorganisms in the environment. Second, the immune system can be supported and maintained through the administration of prophylactic and/or suppressive therapies, which decrease the frequency or severity of opportunistic infections. Primary prophylaxis is the administration of a pharmacological agent to prevent initial infection, whereas secondary prophylaxis is the administration of a pharmacological agent to prevent future occurrences of infection. However, because of the effectiveness of antiretrovirals, there has been a significant decrease in the incidence of opportunistic infections. Therefore, prophylaxis for life for HIV-related co-infections is no longer necessary in many cases.46 If antiretroviral therapy restores immune system function as evident by a rise in CD4 counts, then clinicians may stop administering primary prophylaxis under defined conditions.46 The advantages to ending preventive prophylaxis for opportunistic infections in selected patients is a decrease in drug interactions and toxicities, lower cost of care, and greater adherence to antiretroviral regimens.46 The guidelines for the prevention and treatment of opportunistic infections continue to evolve. Guidelines published by the Department of Health and Human Services provides the most up to date and authoritative resource on opportunistic infections and recommended prophylactic and alternative regimens and is available at In the late symptomatic and advanced stages of HIV disease, when CD4 counts are low and VL may be high, prophylaxis remains important to protect against opportunistic infections. Therefore, throughout the illness trajectory, and even in hospice settings, patients may be taking prophylactic medications, thus requiring sophisticated planning and monitoring.

Additionally, HIV-infected individuals are at risk for severe diseases that are vaccine preventable, such as hepatitis A and B, tetanus, influenza, pneumococcal and measles, rubella, and mumps. Figure 40.1 presents vaccine-preventable illnesses and interventions.

Figure 40.1 Vaccine preventable illnesses and immunization schedule for HIV-infected adults.45

Figure 40.1 Vaccine preventable illnesses and immunization schedule for HIV-infected adults.45

Indications for antiretroviral therapy across the illness trajectory

Without a cure for HIV, all treatments are essentially palliative in nature to slow disease progression and limit the occurrence of opportunistic infections, which adversely affect quality of life. The goal of initiating antiretroviral therapy is to achieve maximum long-term suppression of HIV-RNA and to restore or preserve immune system function and thereby reduce morbidity and mortality and promote quality of life. Historically, assessment of the CD4 cell count was used to determine the initiation of antiretroviral therapy with antiretroviral therapy primarily reserved for CD4 counts below 350 cells/mm3. Currently, antiretroviral therapy is recommended for all HIV patients regardless of CD4 cell count.44 The benefits of early therapy include earlier suppression of viral replication, preservation of the immune system functioning, prolongation of disease-free survival, and a decrease in the risk of HIV transmission.44 However, the risks of early therapy initiation include lower quality of life caused by the adverse effects of therapy, problems with adherence to therapy, and subsequent drug resistance, with the potential limitation of future treatment options. There is further concern regarding the risks of severe toxicities associated with certain antiretroviral medications, such as elevations in serum levels of triglycerides and cholesterol, alterations in fat distribution, or insulin resistance and diabetes mellitus.44 The decision to start therapy involves discussion with the patient regarding his/her willingness, ability, and readiness to begin therapy and the risk for disease progression given the VL as well as CD4 count. When prescribed, HIV regimens must be maximally suppressive regimens and should be used guided by resistance assays. The use of drug resistance testing has become an integral part of HIV clinical care and is an important component of choosing the most effective antiretroviral regimens.

Antiretroviral therapy used to treat HIV infection

Antiretroviral drugs are broadly classified by the phase of the retrovirus life-cycle that the drug inhibits.

  • Nucleoside reverse transcriptase inhibitors (NRTIs) interfere with the action of an HIV protein called reverse transcriptase, which the virus needs to make new copies of itself.

  • Non-nucleoside reverse transcriptase inhibitors (NNRTIS) inhibit reverse transcriptase directly by binding to the enzyme and interfering with its function.

  • Protease inhibitors (PIs) target viral assembly by inhibiting the activity of protease, an enzyme used by HIV to cleave nascent proteins for final assembly of new virons.

  • Integrase inhibitors inhibit the enzyme integrase, which is responsible for integration of viral DNA into the DNA of the infected cell.

  • Entry inhibitors (fusion inhibitors and CCR5 antagonist) interfere with binding, fusion, and entry of HIV-1 to the host cell by blocking one of several targets. Maraviroc and enfuvirtide are the two available agents in this class.45

Recommended antiretroviral therapy for patients naïve to antiretroviral therapy

When patients are naïve to antiretroviral therapy, it is recommended that they begin a combination antiretroviral regimen. As of this writing, the preferred regimens are either NNRTI, protease inhibitor, or integrase inhibitor based. The exact combinations recommended constantly change based on the emergence of high-quality evidence that supports the effectiveness in naïve patients. The reader should refer to the Department of Health and Human Services website to obtain the latest approved medications and the combination recommendations based on the latest evidence (

Reasons to change a regimen

It is appropriate to change a medication regimen when there is insufficient viral suppression, evident by an increase in VL, an inadequate increase in CD4 cell counts, evidence of disease progression, adverse clinical effects of therapy, or compromised adherence caused by the inconvenience of difficult regimens. The decision to change therapy involves consideration of whether other drug choices are available, the results of baseline resistance assays and the patient’s commitment to adhere to therapy.

More specifically, the criteria for considering changing a patient’s antiretroviral regimen include the following44:

  • When there is virological or incomplete failure: When the HIV VL fails to fall to a level < 200 copies/mL or < 50 copies/mL by 48 weeks after starting therapy; virological rebound when there is HIV RNA > 200 copies after complete suppression

  • When there is immunological failure: Persistent decline in CD4 cell or failure to achieve an adequate CD4 response despite virological suppression

  • The occurrence or recurrence of HIV-related events after at least 3 months on an antiretroviral regimen (excluding immune reconstitution syndrome)

A change in an antiretroviral regimen can also be guided by drug-resistance tests, such as genotyping and phenotyping assays. Consultation with an HIV specialist is essential.

Concern regarding drug interactions

Considerations should also be given to possible drug interactions such as pharmacokinetic interactions, which occur when administration of one agent changes the plasma concentration of another agent, and pharmacodynamic interactions, which occur when a drug interacts with the biologically active sites and changes the pharmacological effect of the drug without altering the plasma concentration. For example, in palliative care, drug interactions have been reported for patients who are receiving methadone for pain management and who begin therapy with several different HIV drugs in several different classes, particularly the NNRTI and protease inhibitor classes of drugs. Individuals may experience symptoms of opioid withdrawal within 2–3 days of starting therapy because of its effect on the cytochrome P-450 metabolic enzyme CYP3A4 and its induction of methadone metabolism (see Figure 40.2).

Figure 40.2 Potential drug-drug interactions with methadone and non-nucleoside reverse transcriptase inhibitors.

Figure 40.2 Potential drug-drug interactions with methadone and non-nucleoside reverse transcriptase inhibitors.

Source: This figure is adapted from information obtained from a panel on antiretroviral guidelines for adults and adolescents. Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Department of Health and Human Services. March 27, 2012;1–239.

Use and continuation of antiretrovirals in the hospice/palliative care setting

The current aims of antiretroviral therapy are to prevent progression to AIDS, prevent the direct effects and symptoms of HIV disease (such as dementia, neuropathy, and diarrhea), and to prevent the complications of AIDS. At the end of life, it is typical to consider only those medications that are necessary to minimize suffering and symptoms. Considering whether or not to continue antiretroviral therapy is be best made in consultation with an HIV specialist and a in focused discussion with the patient and family members. Patients can be asked, “How do you feel when you take your antiretroviral medications?” Because medications may still symbolize hope, patients who enter hospice may have a greater acceptance of their mortality and wish to stop antiretrovirals because of the side effects. Other patients may wish to continue antiretroviral therapy because of its symptom relief and the prevention of future symptoms related to opportunistic infections. Still consistent with today’s perspective, Von Gunten and colleagues suggest the following plan47:

  1. 1. If the drug causes burdensome symptoms, then discontinue.

  2. 2. If the patient no longer wants the drug, then discontinue.

  3. 3. If the patient is asymptomatic and wants the drug, then continue with close clinical assessment.

  4. 4. Discontinue the measurement of VLs and CD4 counts and help the patient focus on relief of symptoms.

In the hospice and palliative care settings, it is important for clinicians to discuss with patients and families their goals of care to make important decisions regarding the appropriateness of curative, palliative, or both types of interventions. More specifically, examples of clinical decisions about palliative or disease-specific care include48:

  • The use of blood transfusions, psychostimulants, or corticosteroids to treat fatigue in patients with late-stage AIDS

  • Aggressive antiemetic therapy for PI-induced nausea and vomiting or discontinuation of such antiretroviral therapies, given severe side effects

  • Continued suppressive therapy for opportunistic infections

  • Continued use of antiretrovirals or the withdrawal of antiretrovirals after evidence of treatment failure, with assessment of medical risk-benefit and emotional value of therapy

  • Decisions to initiate antiretroviral in newly diagnosed late-stage patients

Selwyn and Rivard48 suggest that decisions regarding these issues need to be based on the specific goals of care, such as quality of life or life prolongation, the use of palliative care interventions to relieve the side effects of other medications, and the use of certain disease-specific therapies to enhance quality of life, as well as the decision to not prolong life when a certain threshold is met, such as progressive dementia.

Adherence to therapy

Adherence, which is “the extent to which a person’s behavior coincides with medical and health advice,”49 is essential to health maintenance for patients with HIV/AIDS because nonadherence to antiretroviral therapy may lead to HIV drug resistance. Medication adherence is defined as the ratio of medication doses taken to those prescribed. The gold standard for medication adherence requires that more than 95% of the regimen be taken to achieve full supression.50,51 Simplifying the patient’s regimen to decrease the number of medications taken and the number of times the patient has to take medications can improve adherence.52,53 Assessment of adherence is most often done by self-report, with studies showing that it is a valid indicator of adherence.54 Important aspects of assessment include asking patients to bring their medications to a health visit, to describe their pill-taking regimens, to review the number of doses taken in 24 hours, and to ask about problems taking the medications and effects of the medications.55 Factors not predictive of adherence include age, sex, race, education, occupation, and socioeconomic status,56 whereas factors predictive of adherence include the following:57

  • Patient characteristics, such as physical and emotional health, material resources, cultural beliefs, self-efficacy, social support, personal skills, and HIV knowledge

  • Clinician factors, including interpersonal style and availability, as well as assessment, communication, and clinical skills

  • Medication regimen factors, such as frequency, number, and size of pills, taste of pills, storage, side effects, effectiveness, and cost

  • Illness factors, including symptoms duration, severity, and stigma

Adherence to medication regimens can be improved through educational, behavioral, and social interventions specific to the patient, clinician, and medication regimen (Table 40.1).58 An established partnership and an open, trusting, and supportive relationship between patient and clinician remain key factors in promoting not only adherence to medication regimens but support of all health-promotion and management initiatives to delay disease progression and AIDS-related complications.

Table 40.1 Interventions to improve antiretroviral medication adherence

Type of intervention

Specific examples

Interventions addressing the patient

Key patient education topics

  • Dynamics of HIV infection

  • Purpose of antiretroviral therapy

  • All names of medications

  • Reasons for dose and administration requirements

  • Potential side effects

  • Techniques for managing side effects

Cues and reminders for patient

  • Detailed daily schedule

  • Doses planned to coincide with daily habits (favorite TV program, morning news)

  • Medication boxes and timers (available from some pharmaceutical companies)

  • Prepoured medications

  • Unit-of-use packaging

Patient involvement in therapeutic plan

  • Contributes to choice of antiretroviral combination

  • Self-control of medications for side effects

  • Anticipatory planning for weekends, vacations

Rewards and reinforcements

Positive feedback: falling HIV RNA level, rising CD4+ cell count, fewer clinic appointments

Social support for adherence

  • Involvement of significant others

  • Support groups

  • Peer counseling and buddy plans

  • Treatment of concomitant conditions such as substance abuse, depression

  • Case management and financial assistance

  • Home visits and telephone follow-up

Interventions addressing the clinician

Continuing education regarding

  • Importance of adherence

  • Factors associated with adherence

  • Techniques to increase adherence

  • Teaching skills

  • Communication skills

  • Effective management of side effects

Cues and reminders for the clinician

  • User-friendly medication review forms

  • Tables and checklists in the clinical chart

  • Patient teaching tools

Social support

  • Involvement of colleagues

  • Team approach

  • Administrative approval for additional time spent with patient on adherence concerns

Interventions addressing the regimen

  • Once- or twice-a-day dosing regimens

  • Use of fewer pills per day

  • Use of smaller pills or capsules

  • Improved taste

  • Simpler storage requirements

  • Fewer side effects

  • Increased effectiveness

  • Decreased cost

Source: Williams (1999), reference 55. Copyright 1999 with permission from Elsevier.

AIDS-related opportunistic infections and malignancies

Opportunistic infections are a great cause of morbidity in individuals with HIV. Given the compromised immune system of HIV-infected individuals, there is a wide spectrum of pathogens that can produce primary and sometimes life-threatening infections, particularly when the CD4 cell counts fall below 200 cells/mm3 (see Figure 40.3). Given the weakened immune systems of HIV-infected persons, even previously acquired infections can be reactivated. Most of these opportunistic infections are preventable through treatment and can at best be palliated to control the acute stage of infection and prevent recurrence through long-term suppressive therapy. Additionally, patients with HIV/AIDS often experience concurrent or consecutive opportunistic infections that are severe and cause a great number of symptoms. The most comprehensive and authoritative review on specific opportunistic infections and their treatments can be found at

Figure 40.3 Natural history of untreated HIV infection and relationship of specific opportunistic infections to CD4 count.

Figure 40.3 Natural history of untreated HIV infection and relationship of specific opportunistic infections to CD4 count.

Patients with HIV/AIDS require symptom management not only for chronic debilitating opportunistic infections and malignancies but also for the side effects of treatments and other therapies. There are five broad principles fundamental to successful symptom management: (1) taking the symptoms seriously, (2) assessment, (3) diagnosis, (4) treatment, and (5) ongoing evaluation.59

  • Taking the symptoms seriously implies that symptoms often are not observable and measurable. Therefore, self-report of the patient should be taken seriously by the practitioner and acknowledged as a real experience of the patient. An important rule in symptom management is to anticipate the symptom and attempt to prevent it.30 Assessment and diagnosis of signs and symptoms of disease and treatment of side effects require a thorough history and physical examination. Questions regarding when the symptom began and its location, duration, severity, and quality, as well as factors that exacerbate or alleviate the symptom, are important. Patients can also be asked to rate the severity of a symptom by using a numerical scale from 0 to 10, with 0 being “no symptom” and 10 being “extremely severe.” Such scales can also be used to rate how much a symptom interferes with activities of daily life, with 0 meaning “no interference” and 10 meaning “extreme interference.”

  • Many patients seek medical care for a specific symptom, which requires a focused history, physical exam, and diagnostic testing. Throughout the continuum of HIV, CD4 counts, VLs, and blood counts and chemistries may provide useful information for the management of the disease and its symptoms. Assessment of current medications and complementary therapies, including vitamin therapy, past medical illness that may be exacerbated by HIV disease, and the administration regimen of chemotherapy and radiation therapy, should also be ascertained to determine the effects of treatment, side effects, adverse effects, and drug interactions. However, when treatment is no longer effective, as in the case of extremely advanced disease, practitioners must reevaluate the benefits versus burden of diagnostic testing and treatments, particularly the need for daily blood draws or more invasive and uncomfortable procedures. When the decision of the practitioners, patient, and family is that all testing and aggressive treatments are futile, their discontinuation is warranted.

  • Treatment of opportunistic infections and malignancies often requires support of the patient’s immune system, antiretroviral therapy to decrease the VL and improve CD4 cell counts, and medications and therapies to cure the patient of opportunistic infections or merely palliate the associated symptoms. Indeed, the treatment of symptoms to improve quality of life plays an important role in the management of HIV throughout the course of the illness.18 In the case of many infections, acute treatment is followed by the regular dosing or maintenance therapy to prevent symptom recurrence. To maximize the quality of life, each patient’s treatment regimen and plan of care should be individualized, with documentation of the treatment response and ongoing evaluation.

  • Ongoing evaluation is key to symptom management and to determining the effectiveness of traditional, experimental, and complementary therapies. Changes in therapies are often necessary because concurrent or sequential illness or conditions occur.59

Holzemer and others60,61 emphasize a number of key tenets related to the symptoms experienced by patients: (1) the patient is the gold standard for understanding the symptom experience; (2) patients should not be labeled “asymptomatic” early in the course of the infection, because they often experience symptoms of anxiety, fear, and depression; (3) nurses are not necessarily good judges of patients’ symptoms, as they frequently underestimate the frequency and intensity of HIV signs and symptoms; however, following assessment, they can answer specific questions about a symptom, such as location, intensity, duration, and so forth; (4) nonadherence to treatment regimens is associated with greater frequency and intensity of symptoms; (5) greater frequency and intensity of symptoms leads to lower quality of life; (6) symptoms may or may not correspond with physiological markers; and (7) patients use few self-care symptom management strategies other than medication.

Symptom assessment and management have been related to quality of life in patients with HIV/AIDS. Using data from a nationally representative cohort of HIV patients (n = 2267), Lorenz et al.62 reported that symptoms were significantly related to health-related quality of life and that the functional status and well-being of patients with HIV was inextricably linked to their symptoms.

The experience of pain in HIV

Pain management must become more integrated in the comprehensive care offered to patients with AIDS. Management of chronic pain syndromes is the most common reason for referral to palliative care.63 Patients with HIV infection present various painful manifestations: (1) GI pain syndromes: oropharyngeal pain, esophageal, abdominal pain, biliary tract and pancreatic pain, and anorectal pain; (2) chest pain syndromes; (3) neurological pain syndromes: headache and neuropathies; and (4) rheumatological pain syndromes: arthritis and arthropathies, myopathy, and myositis.64 In a longitudinal study based on 95 patients with AIDS, Frich and Borgbjerg65 reported the overall incidence of pain as 88%, with 69% suffering moderate-to-severe constant pain that interfered with daily living. The survival rate of patients without pain was significantly higher than in those who reported pain.65

Pain may be undertreated in certain HIV populations, particularly in HIV patients who are intravenous drug users. Providers may view reports of pain as drug-seeking behavior. A vicious cycle ensues whereby this view may actually lead to drug-seeking behaviors.64 When caring for active drug users and those on methadone maintenance it must be assumed that they have tolerance to opioids and may require higher doses of pain medications.

The inadequate assessment and treatment of pain often occurs because of societal, practitioner, and patient barriers and limitations. For example, with regard to pain management, society fears addiction to opioids and has not distinguished between the legitimate and illegal use of drugs. Practitioners may have inadequate knowledge and misconceptions about pain management, whereas patients often fear pain because it is suggestive of advanced disease, and they are reluctant to report pain because they desire to be perceived as “good” patients.

Pain syndromes in patients with AIDS are diverse in nature and etiology. For patients with AIDS, pain can occur in more than one site, such as pain in the legs (peripheral neuropathy reported in 40% of AIDS patients), as well as pain in the abdomen, oral cavity, esophagus, skin, perirectal area, chest, joints, muscles, and head. Pain is also related to HIV/AIDS therapies such as antiretroviral therapies, antibacterials, chemotherapy (such as vincristine), radiation, surgery, and procedures.66 Following a complete assessment, including a history and physical examination, an individualized pain management plan should be developed to treat the underlying cause of the pain.

The principles of pain management in the palliative care of patients with AIDS are the same as for patients with cancer and include regularity of dosing, individualization of dosing, and using combinations of medications. The three-step guidelines for pain management (as outlined by WHO) should be used for patients with HIV disease.67 This approach advocates for the selection of analgesics based on the severity of pain. For mild-to-moderate pain, antiinflammatory drugs such as nonsteroidal antiinflammatory drugs (NSAIDs) or acetaminophen are recommended. However, the use of NSAIDs in patients with AIDS requires awareness of toxicity and adverse reactions because they are highly protein-bound, and the free fraction available is increased in AIDS patients who are cachectic or wasted.67 For moderate-to-severe pain that is persistent, opioids of increasing potency are recommended, beginning with opioids such as codeine, hydrocodone, or oxycodone (each available with or without aspirin or acetaminophen), and advancing to more potent opioids such as morphine, hydromorphone (Dilaudid), methadone (Dolophine), or fentanyl either intravenously or transdermally. In conjunction with NSAIDs and opioids, the following adjuvant therapies are recommended67:

  • Tricyclic antidepressants, heterocyclic and noncyclic antidepressants, and serotonin reuptake inhibitors for neuropathic pain

  • Psychostimulants to improve opioid analgesia and decrease sedation

  • Phenothiazine to relieve anxiety or agitation

  • Butyrophenones to relieve anxiety and delirium

  • Antihistamines have minimal effect on analgesia but increase sedation and relieve anxiety, insomnia, and nausea

  • Corticosteroids to decrease pain associated with an inflammatory component or with bone pain

  • Benzodiazepines for neuropathic pain, anxiety, and insomnia

Caution is noted, however, with use of protease inhibitors (PIs) because they may interact with some analgesics. For example, Ritonavir has been associated with potentially lethal interactions with meperidine, propoxyphene, and piroxicam. The PIs must also be used with caution in patients receiving codeine, tricyclic antidepressants, sulindac, and indomethacin to avoid toxicity. Furthermore, for patients with HIV who have high fevers, the increase in body temperature may lead to increased absorption of transdermally administered fentanyl.

To ensure appropriate dosing when changing the route of administration of opioids or changing from one opioid to another, the use of an equianalgesic conversion chart is suggested. As with all patients, oral medications should be used, if possible, with round-the-clock dosing at regular intervals and the use of rescue doses for breakthrough pain. Often, controlled-release morphine or oxycodone are effective drugs for patients with chronic pain from HIV/AIDS. In the case of neuropathic pain, often experienced with HIV/AIDS, tricyclic antidepressants such as amitriptyline or anticonvulsants such as Neurontin can be very effective.67 However, the use of neuroleptics must be weighed against an increased sensitivity of AIDS patients to the extrapyramidal side effects of these drugs.67 If the cause of pain is increasing tumor size, radiation therapy can also be very effective in pain management by reducing tumor size, as well as the perception of pain. Please refer to the chapter 7, on pain management, which presents the nonopiate analgesics for pain management in patients with pain and opioid analgesics for the management of mild-to-moderate pain and from moderate-to-severe pain in patients.

Tolerance, dependence, and addiction

Physiological tolerance refers to the shortened or diminished effect of a drug resulting from exposure to the drug and, therefore, the need for increasing doses to maintain effect. In the case of opioids, tolerance to analgesic properties of the drug appears to be uncommon in the clinical setting, whereas tolerance to adverse effects such as respiratory depression, somnolence, and nausea is common and favorable. Most patients can remain on stable doses of opioids for prolonged periods of time. If an increase in opioid dosage is needed, it is usually because of disease progression. Another expected physiological response to opioids is physical dependence, which occurs after 3 to 4 weeks of opioid administration, as evidenced by withdrawal symptoms after abrupt discontinuation. If a drug is to be discontinued, halving the daily dose every 1 to 2 days until the dose is equivalent to 15 mg of morphine will reduce withdrawal symptoms.68

Tolerance and physical dependence to opioids does not imply addiction, as addiction is a compulsive craving for a drug for effects other than pain relief and is thought to be uncommon in patients who are terminally ill. Furthermore, studies have demonstrated that although tolerance and physical dependence commonly occur, addiction (psychological dependence) is not common and occurs infrequently in individuals who do not have histories of substance abuse.68 However, it should be noted that a certain percentage of patients with HIV/AIDS will have a history of substance abuse, either past or current, that needs to be recognized so that their pain can be managed appropriately, as well as other symptoms for which they are self-medicating. Healthcare providers in palliative care are often concerned with the administration of opioids to patients who have a history of substance abuse, who are in methadone maintenance programs, or who currently are abusing drugs. Therefore, these patients often receive ineffective pain management. Consistent use of a standard pain scale and regular monitoring of drug consumption by one nurse and one physician can be helpful in ongoing assessment and pain management because it limits potential abuse. Oral administration of medications also lowers abuse potential. Given that substance-abusing patients have greater tolerance to morphine derivatives and benzodiazepines because of previous exposure to these drugs, increased dosage may be necessary for effective pain management, or the interval between doses should be shortened. Furthermore, the dosages of medications should be carefully monitored to avoid overdosing, given the possibility of hepatic failure in substance-abusing patients. Simultaneous use of agonists and antagonists are avoided in all populations because they provoke withdrawal symptoms.66

Alleviating opioid side effects

Although opioids are extremely effective in pain management for patients with HIV, their common side effects must be anticipated and minimized. In medically fragile populations, such side effects may also result from other comorbid conditions rather than from opioid analgesia itself; therefore, a complete assessment is warranted. Medications and treatments to alleviate opioid side effects include:

  • Nausea and vomiting, treated with prochlorperazine (Compazine), metoclopramide (Reglan), haloperidol (Haldol), granisetron (Kytril), and ondansetron (Zofran); (a change in the opioid may also be necessary)

  • Constipation, treated by increasing fiber in the diet, stimulating cathartic drugs such as bisacodyl or senna, or hyperosmotic agents such as sorbitol or lactulose

  • Sedation, treated by reducing the opioid in each dose or decreasing the frequency, as well as the ingestion of caffeine, and administering dextroamphetamine or methylphenidate (again, a change in the opioid may be warranted)

  • Confusion, treated by lowering the opioid dose, changing to a different opioid or haloperidol

  • Myoclonus, treated with clonazepam (Klonopin), diazepam (Valium), and baclofen (Lioresal), or a change in the opioid

  • Respiratory depression, prevented by starting at a low dose in opioid-naïve patients and being aware of relative potencies when changing opioids, as well as differences by routes of administration. Naloxone (Narcan) may be administered to reverse respiratory depression but should be used with caution in patients who are opioid-tolerant because of the risk of inducing a withdrawal state. Dilute one ampule of naloxone (0.4 mg) in 10 mL of normal saline and titrate to the patient’s respirations.68

Nonpharmacological and complementary interventions for pain

Nonpharmacological interventions for pain management can also be effective in the care of patients with HIV. Bed rest, simple exercise, heat or cold packs to affected sites, massage, transcutaneous electrical stimulation, and acupuncture can be effective physical therapies with this patient population. Psychological interventions to reduce pain perception and interpretation include hypnosis, relaxation, imagery, biofeedback, distraction, and patient education. Newshan and Staats69 performed a comprehensive review of the literature on the effectiveness of complementary therapies for pain. Only acupuncture has been adequately studied in the HIV population, and the effectiveness of acupuncture for pain management is inconsistent. Other modalities such as acupressure, massage, yoga, and energy-based therapies have the most evidence to support their use in pain management.

Management of other symptoms experienced with HIV

Patients with HIV/AIDS require symptom management not only for chronic debilitating opportunistic infections and malignancies but also for the side effects of treatments and other therapies. The most prevalent symptoms in AIDS population are fatigue (54%–85%), pain (63%–80%), nausea (43%–49%), and constipation (34%–35%); other symptoms include depression, breathlessness, insomnia, diarrhea, anorexia and anxiety.12,70 Personal characteristics that interact with both HIV diagnosis and its medical management can influence symptom experience. In a prospective longitudinal study, of 317 men and women living with HIV/AIDS in the San Francisco Bay Area completed the Memorial Symptom Assessment Scale, which is designed to estimate prevalence, severity, and distress of each symptom and global symptom burden. The median number of symptoms was nine, and symptoms experienced by more than half the sample population included lack of energy (65%), drowsiness (57%), difficulty sleeping (56%), and pain (55%). Global symptom burden was unrelated to age or CD4 cell count. Those with an AIDS diagnosis had significantly higher symptom burden scores, as did those currently receiving antiretroviral therapy. African Americans reported fewer symptoms than Caucasians or Mixed/ Other race, and women reported more symptom burden after controlling for AIDS diagnosis and race.12 Symptom and comfort measures at the end of life for HIV-infected patients share many of the features seen in non-HIV-infected patients at the end of life, because a large percentage of late-stage AIDS patients are now dying of non-AIDS-defining illnesses. Therefore, translation of basic principles in pain and symptom management should be used for HIV-infected patients at the end of life.71

Table 40.2 lists selected symptoms in HIV, common presentations, and selected interventions.

Table 40.2 Selected symptoms associated with HIV/AIDS





Fatigue (asthenia)

  • HIV infection

  • Opportunistic infections

  • AIDS medications

  • Prolonged immobility

  • Anemia

  • Sleep disorders

  • Hypothyroidism

  • Medications

  • Weakness

  • Lack of energy

  • Treat reversible causes.

  • Pace activities with rest periods/naps.

  • Ensure adequate nutrition.

  • Use relaxation exercises and meditation.

  • Take warm rather than hot showers or baths.

  • Use cool room temperatures.

  • Administer dextroamphetamine 10 mg/day PO.

Anorexia (loss of appetite) and cachexia (wasting)

  • Metabolic alterations caused by cytokines and interleukin-1

  • Opportunistic infections

  • Nutrient malabsorption from intestines

  • Chronic diarrhea

  • Depression

  • Taste disorders

  • Diminished food intake

  • Profound weight loss

  • Treat reversible causes.

  • Consult with dietician about choice of food.

  • Make food appealing by color and texture.

  • Avoid noxious smells at mealtime.

  • Avoid fatty, fried, and strong-smelling foods.

  • Offer small, frequent meals and nutritious snacks.

  • Encourage patients to eat whatever is appealing.

  • Provide high-energy, high-protein liquid supplements.

  • **? Antidepressants**

  • Use appetite stimulants such as megesterol acetate 800 mg/day PO or dronabinol 2.5 mg PO qd or bid.

  • Testosterone administered by 5 mg transdermal patch to increase weight gain and muscle mass.

Fever (elevated body temperature)

  • Bacterial toxins

  • Viruses

  • Yeast

  • Antigen–antibody reactions

  • Drugs

  • Tumor products

  • Exogenous pyrogens

  • Body temperature >99.5°F (oral), 100.5°F (rectal), or 98.5°F (axillary)

  • Chills, rigor

  • Sweating, night sweats

  • Delirium

  • Dizziness

  • Dehydration

  • Treat reversible causes.

  • Maintain fluid intake.

  • Use loose clothing and sheets, with frequent changing.

  • Avoid plastic bed coverings.

  • Exceptionally high temperature may require ice packs or cooling blankets.

  • Administer around-the-clock antipyretics such as acetaminophen or ASA, 325–650 mg PO q6–8 h.

Dyspnea (shortness of breath) and cough

  • Bronchospasm

  • Embolism

  • Effusions

  • Pulmonary edema

  • Pneumothorax

  • Kaposi’s sarcoma

  • Obstruction

  • Opportunistic infections

  • Anxiety

  • Allergy

  • Mechanical or chemical irritants

  • Anemia

  • Productive or nonproductive cough

  • Crackles

  • Stridor

  • Hemoptysis

  • Inability to clear secretions

  • Wheezing

  • Tachypnea

  • Gagging

  • Intercostal retractions

  • Areas of pulmonary dullness

  • Anxiety

  • Treat reversible causes.

  • Elevate bed to Fowler’s or high Fowler’s position.

  • Provide abdominal splints.

  • Administer humidified oxygen therapy to treat dyspnea.

  • Use fans or open windows to keep air moving for dyspnea.

  • Remove irritants or allergens such as smoke.

  • Teach pursed-lips breathing for patients with obstructive disease.

  • Use frequent mouth care to decrease discomfort from dry mouth.

  • Treat bronchospasm.

  • Suppress cough with dextromethorphan hydrobromide 15–45 mg PO q4 h PRN, or opioids such as codeine 15–60 mg PO q4 h even if taking other opioids for pain, or hydrocodone 5–10 mg PO q4–6 h PRN, or morphine 5–20 mg PO q4 h PRN (may be increased) to relieve dyspnea, cough, and associated anxiety.

  • For hyperactive gag reflex use nebulized lidocaine 5 mL of 2% solution (100 mg) q3–4 h PRN.


  • Idiopathic HIV

  • enteropathy

  • Diet

  • Bowel infections (bacteria, parasites, protozoa)

  • Chronic bowel inflammation

  • Medications

  • Obstruction with overflow incontinence

  • Stress

  • Malabsorption

  • Flatulence

  • Multiple bowel movements/day

  • Cramps/colic

  • Hemorrhoids

  • Treat reversible causes.

  • Maintain adequate hydration.

  • Replace electrolytes by giving Gatorade or Pedialyte.

  • Give rice, bananas, or apple juice to reduce diarrhea.

  • Increase protein and calories.

  • Avoid dairy products, alcohol, caffeine, extremely hot or cold foods, spicy or fatty foods.

  • Maintain dignity while toileting.

  • Provide ready access to bathroom or commode.

  • Maintain good perianal care.

  • Administer medications such as Lomotil 2.5–5.0 mg q4–6 h; Kapectolin 60–120 mL q4–6 h (max 20 mg/day); Imodium 2–4 mg q6 h (max 16 mg/day); or aregoric (tincture of opium) 5–10 mL q4–6 h.

Insomnia (inability to fall asleep or stay asleep)

  • Anxiety

  • Depression

  • Pain

  • Medications

  • Delirium

  • Sleep disorders such as sleep apnea

  • Excess alcohol intake

  • Caffeine

  • Early-morning awakening

  • Nighttime restlessness

  • Fear

  • Nightmares

  • Treat reversible causes.

  • Establish a bedtime routine.

  • Reduce daytime napping.

  • Avoid caffeinated beverages and alcohol.

  • Take a warm bath 2 h before bedtime.

  • Use relaxation techniques.

  • Provide an environment conducive to sleep (dark, quiet, comfortable temperature).

  • Administer anxiolytics such as benzodiazapines (use for <2 wk because of dependency), antidepressants (helpful over long term), or other sedatives such as Benadryl.


  • Infections such as encephalitis, herpes zoster, meningitis, toxoplasmosis

  • Sinusitis

Pain in one or more areas of the head or over sinuses

  • Treat reversible causes.

  • Suggest chiropractic manipulation.

  • Provide message therapy.

  • Use relaxation therapy.

  • Apply TENS.

  • Use stepwise analgesia.

  • Administer corticosteroids to reduce swellings around space-occupying lesions.

Source: Coyne et al. (2002), reference 72.

Psychosocial issues for patients with HIV/AIDS and their families

Uncertainty is a chronic and pervasive source of psychological distress for persons living with HIV, particularly as it relates to ambiguous symptom patterns, exacerbation and remissions of symptoms, selection of optimal treatment regimens, the complexity of treatments, and the fear of stigma and ostracism. Such uncertainty is linked to negative perceptions of quality of life and poor psychological adjustment.73 However, many practitioners focus on patient’s physical functioning and performance status as the main indicators of quality of life, rather than on the symptoms of psychological distress such as anxiety and depression.74 Based on a sample of 203 patients with HIV/AIDS, Farber and colleagues75 reported that positive meaning of the illness was associated with a higher level of psychological well-being and lower depressed mood and contributed more than problem-focused coping and social support to predicting both psychological well-being and depressed mood. In a sample of 99 HIV-infected persons, perceived stress, total mood disturbance, present health, and HIV status were independently associated with both frequency of symptoms and symptom distress. The strongest correlates were observed between fatigue and symptom frequency, as well as fatigue and symptom distress. After conducting a backward stepwise regression analysis that included perceived stress, sex, age, HIV status, race, and income, researchers showed that predictor variables of symptom distress included symptom frequency, depression/dejection, anger/ hostility, and fatigue, explaining 79% of the variance in symptom distress after controlling for variables that were removed from the model.76

Nurses must also be cognizant of issues such as the experience of multiple losses, complicated grieving, substance abuse, stigmatization, and homophobia, which contribute to patients’ sense of alienation, isolation, hopelessness, loneliness, and depression. Such emotional distress often extends to the patient’s family caregivers as they attempt to provide support and lessen the patient’s suffering yet are often suffering from HIV themselves. Reciprocal suffering is experienced by family caregivers as well as patients, and there is the need to improve their quality of life through palliative care.77

Psychosocial assessment of patients with HIV

Psychosocial assessment of patients with HIV is important throughout the illness trajectory, particularly as the disease progresses and there is increased vulnerability to psychological distress. Psychosocial assessment includes the following:

  • Social, behavioral, and psychiatric history, which includes the history of interpersonal relationships, education, job stability, career plans, substance use, preexisting mental illness, and individual identity

  • Crisis points related to the course of the disease as anxiety, fear, and depression intensify, creating a risk of suicide

  • Life-cycle phase of individuals and families, which influences goals, financial resources, skills, social roles, and the ability to confront personal mortality

  • Influence of culture and ethnicity, including knowledge and beliefs associated with health, illness, dying, and death, as well as attitudes and values toward sexual behaviors, substance use, health promotion and maintenance, and healthcare decision-making

  • Past and present patterns of coping, including problem-focused and/or emotion-focused coping

  • Social support, including sources of support, types of supports perceived as needed by the patient/family, and perceived benefits and burdens of support

  • Financial resources, including healthcare benefits, disability allowances, and the eligibility for Medicaid/Medicare.

Depression and anxiety in patients with HIV

Because AIDS is a life-threatening, chronic, debilitating illness, patients are at risk for such psychological disorders as depression and anxiety. Among persons living with HIV/AIDS, the prevalence of depression has been estimated at 20%–30% and is characterized by depressed mood, low energy, sleep disturbance, anhedonia, inability to concentrate, loss of libido, weight changes, and possible menstrual irregularities.78 It is also important to assess whether depressed patients are using alcohol, drugs, and opioids.

Patients with HIV who are diagnosed with depression should be treated with antidepressants to control their symptoms. Selective serotonin reuptake inhibitors (SSRIs) are as effective as tricyclic antidepressants but are better tolerated because of their more benign side-effect profile.79 Further, SSRIs may interact with such antiretroviral medications as protease inhibitors and NNRTIs; therefore, initial SSRI dosage should be lowered with careful upward titration and close monitoring for toxic reactions.79 Serotonin and norepinephrine reuptake inhibitors such as venlafaxine and duloxetine are newer antidepressants that also are useful in treating chronic pain. Tricyclic antidepressants are indicated for treating depression only in patients who do not respond to newer medications.79 It is noted that monoamine oxidase inhibitors may interact with multiple medications used to treat HIV and should therefore be avoided. Medication interaction and liver function profiles should be considered before antidepressant therapy is initiated.

Because depression is a common symptom in patients with HIV/AIDS, research studies have also focused on other factors that relate to depression in this patient population. Schrimshaw examined whether the source of unsupportive social interactions had differential main and interactive relations with depressive symptoms among ethnically diverse women with HIV/AIDS (n = 146).80 After controlling for demographic variables, Schrimshaw80 found that unsupportive social interactions with family had a major effect in predicting more depressive symptoms and that there was a significant interaction between unsupportive interactions from a lover/spouse and friends, which predicted high levels of depressive symptoms. Arrindell81 examined differential coping strategies, anxiety, depression, and symptomatology among African-American women with HIV/AIDS (n = 30). The results indicated that the majority of women used emotion-focused coping; however, there were no main effects for coping strategies on psychological distress and no significant difference between symptomatology and coping strategies. An inverse relationship was reported between psychological distress and social support, with less distress reported when women had financial assistance from their families and friends. There was a relationship reported between symptomatology and anxiety, with those who were asymptomatic reporting no anxiety.

Anxiety disorders are more prevalent in people with HIV than in the general population. The prevalence rate of anxiety disorders in people with HIV has been estimated to be as high as 38%.82 Generalized anxiety disorder is manifested as worry, trouble falling asleep, impaired concentration, psychomotor agitation, hypersensitivity, hyperarousal, and fatigue.82

The treatment for patients with anxiety is based on the nature and severity of the symptoms and the coexistence of other mood disorders or substance abuse. Short-acting anxiolytics such as lorazepam (Ativan), and alprazolam (Xanax) are beneficial for intermittent symptoms, whereas buspirone (BuSpar) and clonazepam (Klonopin) are beneficial for chronic anxiety.83

For many patients experiencing psychological distress associated with HIV, participation in therapeutic interventions such as skill-building, support groups, individual counseling, and group interventions using meditation techniques can provide a sense of psychological growth and a meaningful way of living with the disease.84,85,86 Such interventions are particularly helpful for patients with HIV/AIDS who may not have disclosed their sexual orientation or substance-abusing history to their families. Often, significant stress is associated with sharing such information, particularly when such disclosures occur during the stage of advanced disease. However, the need for therapeutic communication and support from all health professionals caring for the patient and their family exists throughout the illness continuum.

Often many members of a single family are infected and die because of the transmission of the disease from sexual partners and through childbirth. In the homosexual community and substance-abusing community, multiple deaths resulted in complicated mourning. The anxiety, depression, sadness, and loneliness associated with multiple deaths and unending experiences of loss must be recognized and support must be offered. Community resources and referrals to HIV/AIDS support groups and bereavement groups are important in emotional adjustment to these profound losses.

Spiritual issues in AIDS

As health professionals, assessment of the patient’s spiritual needs is an important aspect of holistic care. Learning about patients’ spiritual values, needs, and religious perspectives is important in understanding their perspectives regarding their illnesses and their perceptions and meaning of life and its purpose, suffering, and eventual death. Spirituality is a way of being or experiencing that comes about through an awareness of a transcendent dimension and values with regard to self, others, nature, and God.87 An understanding of the patient’s relationship with self, others, nature, and God can inform interventions that promote spiritual well-being and the possibility of a “good death” from the patient’s perspective.

Some patients living with HIV have the spiritual needs of meaning, value, hope, purpose, love, acceptance, reconciliation, ritual, and affirmation of a relationship with a higher being.87 Kremer88 found that spirituality was a prime factor in determining whether the individual viewed HIV as a positive or negative turning point in their life. Those with increased spirituality felt chosen by a Higher Power to have HIV and perceived their infection as a positive turning point in their life. In contrast those with lower spirituality viewed HIV as a negative point in their life. Other investigators have also found a relationship between spirituality and HIV disease progression.88 Ironson et al.89 conducted a large, longitudinal study that documented the effects of perceptions of God on the health status of PLWH. In this study, positive perceptions of God were associated with slower while negative perceptions of God were associated with faster HIV disease progression.

Assisting patients to find meaning and value in their lives, despite adversity, often involves a recognition of past successes and their internal strengths. Respectful behavior toward patients demonstrates love and acceptance of the patient as a person. Encouraging open communication between the patient and family is important to work toward reconciliation and the completion of unfinished business.

As with many life-threatening illnesses, patients with AIDS may express anger with God. Some may view their illness as a punishment or are angry that God is not answering their prayers. Expression of feelings can be a source of spiritual healing. Clergy can also serve as valuable members of the palliative care team in offering spiritual support and alleviating spiritual distress. The use of meditation, music, imagery, poetry, and drawing may offer outlets for spiritual expression and promote a sense of harmony and peace.

In a grounded-theory study of hope in patients with HIV/AIDS, Kylma and colleagues90 found that patients had an alternating balance between hope, despair, and hopelessness based on the possibilities of daily life. They experienced losses such as loss of joy, carefree time, safety, self-respect, potential parenthood, privacy, and trust in self, others, systems, and God. However, there was hope as they received strength by seeing their life from a new perspective as well as an acceptance of the uncertainty of life and the value of life. Hope was described as a basic resource in life and meant the belief that life is worth living at the present and in the future, with good things still to come. Despair meant losing grip, unable to take hold of anything, whereas hopelessness implied giving up in the face of an assumably nonexistent future, which was the opposite of hope.

For all patients with chronic, life-threatening illness, hope often shifts from hope that a cure will soon be found to hope for a peaceful death with dignity, including the alleviation of pain and suffering, determining one’s own choices, being in the company of family and significant others, and knowing that their end-of-life wishes will be honored. Often, the greatest spiritual comfort offered by caregivers or family for patients comes from active listening and meaningful presence by sitting and holding their hands and showing them that they are not abandoned and alone.

Spiritual healing may also come from life review, as patients are offered an opportunity to reminisce about their lives, reflect on their accomplishments, reflect on their misgivings, and forgive themselves and others for their imperfections. Indeed, such spiritual care conveys that even in the shadow of death, there can be discovery, insight, the completion of relationships, the experience of love of self and others, and the transcendence of emotional and spiritual pain. Often, patients with AIDS, by their example, teach nurses, family, and others how to transcend suffering and how to die with grace and dignity.

Advance care planning

Advance planning is another important issue related to end-of-life care for patients with HIV/AIDS. Most patients with AIDS have not discussed with their physicians the kind of care they want at the end of life, although more homosexual men have executed an advance directive than injection-drug users or women.91 Nonwhite patients with AIDS report that they do not like to talk about the care they would want if they were very sick and are more likely to feel that if they talk about death, it will bring death closer. Conversely, white patients were more likely to believe that their doctor was an HIV/AIDS expert and good at talking about end-of-life care and to recognize they have been very sick in the past and that such discussions are important.81,92 According to Ferris and colleagues,93 healthcare providers can assist patients and families by (1) discussing the benefits of healthcare and social support programs, unemployment insurance, worker’s compensation, pension plans, insurance, and union or association benefits; (2) emphasizing the importance of organizing information and documents so that they are easily located and accessible; (3) suggesting that financial matters be in order, such as power of attorney or bank accounts, credit cards, property, legal claims, and income tax preparation; (4) discussing advance directives or power of attorney for care and treatment, as well as decisions related to the chosen setting for dying; and (5) discussing the patient’s wishes regarding their death—Whom does the patient want at the bedside? What rituals are important to the dying patient? Does the patient wish an autopsy? What arrangements does the patient want regarding the funeral services and burial? Where should donations in remembrance be sent? It is important to realize that these issues should be discussed at relevant stages in the person’s illness, in a manner that is both respectful to the patient’s wishes and strengths and that promotes the patient’s sense of control over his/her life and death.

Healthcare providers must also understand the concept of capacity. In assessing the patient’s capacity to make healthcare decisions (a clinical assessment) the health provider must question whether the decision-maker knows the nature and effect of the decision to be made and understands the consequences of his/her actions and determine whether the decision is consistent with an individual’s life history, lifestyle, previous actions, and best interests.93

When an individual has capacity, and in anticipation of the future loss of capacity, he/she may initiate advance directives such as a living will and/or the designation of a healthcare agent who will carry out the patient’s healthcare wishes or make healthcare decisions in the event that the patient loses capacity. The patient may also give an individual the power of attorney regarding financial matters and care or treatment issues. Advance directives may include the patient’s decisions regarding such life-sustaining treatments as cardiopulmonary resuscitation, use of vasoactive drips to sustain blood pressure and heart rate, dialysis, artificial nutrition and hydration, and the initiation or withdrawal of ventilatory support. The signing of advance directives must be witnessed by two individuals who are not related to the patient or involved in the patient’s treatment. Individuals who have capacity can revoke their advance directives at any time. If a patient is deemed mentally incompetent (by the Court), state statutes may allow the Court to designate a surrogate decision-maker for the patient.

Palliative care through the dying trajectory

Death from AIDS usually results from multiple causes, including chronic infections, malignancies, neurological disease, malnutrition, and multisystem failure. However, even for patients with HIV/AIDS for whom death appears to be imminent, spontaneous recovery with survival of several more weeks or months is possible. The terminal stage is often marked by periods of increasing weight loss and deteriorating physical and cognitive functioning. In the terminal stage of HIV, decisions related to prevention, diagnosis, and treatment pose ethical and clinical issues for both patients and their healthcare providers because they must decide on the value and frequency of laboratory monitoring, use of invasive procedures, use of antiretroviral and prophylactic measures, and patients’ participation in clinical trails.

The dying process for patients with advanced AIDS is commonly marked by increasingly severe physical deterioration, leaving the patient bed-bound and experiencing wasting, dyspnea at rest, and pressure ulcers. Ultimately, patients become dependent on others for care. Febrile states and changes in mental status often occur as death becomes more imminent. Maintaining the comfort and dignity of the patients becomes a nursing priority. Symptomatic treatments, including pain management, should be continued throughout the dying process, as even obtunded patients may feel pain and other symptoms.

The end of life is an important time for individuals to accept their own shortcomings and limitations and differences with significant others so that death may be accepted without physical, psychosocial, and spiritual anguish. At the end of life, patients with AIDS may have a desire for hastened death. Based on a sample of 128 terminally ill patients with AIDS who were receiving palliative care, Pessin94 found that there was a significant association between desire for a hastened death and cognitive impairment, with memory impairment providing an independent and unique contribution to desire for hastened death. Curtis and colleagues95 also examined the desire of AIDS patients for less life-sustaining treatment as associated with the medical futility rationale. It was reported that 61% (n = 35) of patients with advanced AIDS accepted the medical futility rationale as it applied to their medical care at the end of life, including the use of mechanical ventilation. However, because 26% (n = 15) thought the medical futility rationale was probably acceptable and 10% (n = 5) said it was definitely not acceptable, clinicians invoking the medical futility rationale should consider the diversity of these patient attitudes toward care at the end of life. Through an interdisciplinary approach to care, health professionals can assist patients with the following: reducing their internal conflicts, such as fears about the loss of control, which can be related to a desire for hastened death; making end-of-life decisions regarding medical treatments that are consistent with their values, wishes, and preferences; promoting the patient’s sense of identity; supporting the patient in maintaining important interpersonal relationships; and encouraging patients to identify and attempt to reach meaningful but limited goals.

Because palliative care also addresses the needs of family, it is important to consider the vulnerability of family members to patients’ health problems at the end of life. In a study of the health status of informal caregivers (n = 76) of persons with HIV/AIDS, Flaskerud and Lee96 found that caregiver distress regarding a patient’s symptoms, anxiety, and education was related to depressive symptoms and that depressive symptoms, anger, and functional status of patients with AIDS were related to poorer physical health of informal caregivers. Therefore, members of the palliative care team can provide much-needed assistance not only to patients but their families.

As illness progresses and death approaches, health professionals can encourage patients and family members to express their fears and end-of-life wishes. Encouraging patients and families to express such feelings as “I love you,” “I forgive you,” “Forgive me—I am sorry,” “Thank you,” and “Good-bye” is important to the completion of relationships.97 Peaceful death can also occur when families give the patient permission to die and assure them that they will be remembered.

Loss, grief, and bereavement for persons with HIV/AIDS and their survivors

Throughout the illness trajectory, patients with HIV disease experience many losses: a sense of loss of identity as they assume the identity of a patient with AIDS; loss of control over health and function; loss of roles as the illness progresses; loss of body image because of skin lesions, changes in weight, and wasting; loss of sexual freedom because of the need to change sexual behaviors to maintain health and prevent transmission to others; loss of financial security through possible discrimination and increasing physical disability; and loss of relationships through possible abandonment, self-induced isolation, and the multiple deaths of others from the disease.98 In a study of AIDS-related grief and coping with loss among HIV-positive men and women (n = 268), Sikkema and colleagues98 reported that the severity of grief reaction to AIDS-related losses was associated with escape-avoidance and self-controlling coping strategies, the type of loss, depressive symptoms, and history of injection drug use. For healthcare professionals, each occurrence of illness may pose new losses and heighten the patient’s awareness of his or her mortality. Therefore, each illness experience is an opportunity for health professionals to respond to cues of the patients in addressing their concerns and approaching the subject of loss, dying, and death. Given that grief is the emotional response to loss, patients dying from AIDS may also manifest the signs of grief, which include feelings of sadness, anger, self-reproach, anxiety, loneliness, fatigue, shock, yearning, relief, and numbness; physical sensations such as hollowness in the stomach, tightness in the chest, oversensitivity to noise, dry mouth, muscle weakness, and loss of coordination; cognitions of disbelief or confusion; and behavior disturbances in appetite, sleep, social withdrawal, loss of interest in activities, and restless overactivity.

Upon the death of the patient, the patient’s family and significant others enter a state of bereavement, or a state of having suffered a loss, which is often a long-term process of adapting to life without the deceased.97 Family and significant others may experience signs of grief, including a sense of presence of the deceased, paranormal experiences or hallucinations, dreams of the deceased, and a desire to have cherished objects of the deceased and to visit places frequented by the deceased. The work of grief is a dynamic process that is neither time-limited nor predictable.99 It may be that those left behind never “get over” the loss but, rather, find a place for it in their life and create through memory a new relationship with their loved one.

Families and partners of patients with AIDS may experience disenfranchised grief, defined as the grief that persons experience when they incur a loss that is not openly acknowledged, publicly mourned, or socially supported.100 Support is not only important in assisting families in the tasks of grieving but is also important for nurses who have established valued relationships with their patients. Indeed, disenfranchised grief may also be experienced by nurses who do not allow themselves to acknowledge their patient’s death as a personal loss or who are not acknowledged by others, such as the patient’s family or even professional colleagues, as having suffered a loss.

For all individuals who have experienced a loss, Worden101 has identified the tasks of grieving as (1) accepting the reality of the death; (2) experiencing the pain of grief; (3) adjusting to a changed physical, emotional, and social environment in which the deceased is missing; and (4) finding an appropriate emotional place for the person who died in the emotional life of the bereaved.

To facilitate each of Worden’s tasks, Mallinson99 recommends the following nursing interventions:

  • Accept the reality of death by speaking of the loss and facilitating emotional expression.

  • Work through the pain of grief by exploring the meaning of the grief experience.

  • Adjust to the environment without the deceased by acknowledging anniversaries and the experience of loss during holidays and birthdays; help the bereaved to problem-solve and recognize their own abilities to conduct their daily lives.

  • Emotionally relocate the deceased and move on with life by encouraging socialization through formal and informal avenues.

The complications of AIDS-related grief often come from the secrecy and social stigma associated with the disease.102 Reluctance to contact family and friends can restrict the normal support systems available for the bereaved.

In addition to a possible lack of social support, the death of patients with AIDS may result in complicated grief for the bereaved, given that death occurs after lengthy illness, and the relationships may have been ambivalent. Through truthful and culturally sensitive communication, health professionals can offer families support in their grief and promote trust that their needs are understood and validated.

Case study

Maria Jackson, a patient with MAC

Maria Jackson, a 34-year-old woman, was seen in the emergency room for fever, fatigue, anorexia, nausea and vomiting, and weight loss, having 30 episodes of liquid diarrhea each day. As a differential diagnosis, she was tested for HIV. Findings indicated a CD4 count of 45 cells/mm3 and a VL of 142,000 mL, indicative of the advanced stage of HIV. Her laboratory work indicated anemia and an elevated alkaline phosphatase. Disseminated MAC was confirmed by culture of her blood. Physical examination revealed hepatosplenomegaly and inguinal lymphadenopathy. Maria was started on azithromycin and rifabutin to treat MAC, as well as a regimen of combination antiretroviral agents one potent PI and two NRTIs—specifically atazanavir + ritonavir (PI)—and emtricitabine and tenofovir disoproxil fumarate (Truvada) to treat her advanced stage of AIDS. Maria had lived with Juan for the last five years, but they were not married as he had a drug history and two incarcerations for drug possession. Maria did not know his criminal history when she met him. After Maria’s infection improved she still had difficulty “holding down” food but ate small frequent meals. She lost two dress sizes, going from a size 8 to a size 4. Maria had all she could do to take care of herself and two young children.

The diarrhea improved with medications, but Maria was still too insecure to leave the house because she was more comfortable having immediate access to a toilet. Within the month, Maria became more depressed and isolated. Although a home health aide visited for a few hours each day, there was minimal verbal interaction between them. She began to stay in bed for long periods of time during the day, wondering if she was ever going to get better. Maria was treated with an antidepressant, and within weeks her mood improved. Her appetite also increased and her physician was encouraged by her response to therapy. Maria’s physician discussed advance directives, and Maria asked her sister to be her healthcare proxy and she also wanted her sister to be her children’s guardian, as Juan was not the children’s father.

Over the next 2 months, Maria’s quality of life improved because she was free of opportunistic infections, and although unemployed she kept busy with household activities. Maria understood the fragility of her condition and was adherent to her medication regimen. However, night sweats, fever, and diarrhea returned, and she was readmitted to the hospital within 6 months of her initial hospitalization with an exacerbation of MAC and severe dehydration. The palliative care team was asked for a consultation by the AIDS specialist. The advanced practice nurse developed a very supportive relationship with Maria and her family. She listened attentively to Maria’s fears and concerns and provided a caring presence that helped her to relax. They discussed her relationship with Juan, her children, and her sister. Maria asked the nurse to call her sister and tell her about her hospitalization. Maria was coming to terms with her diagnosis and was ready to move beyond old hurts in her life. Maria had a strong religious faith, and asked for the chaplain to visit because she was trying to come to terms with her own suffering and the fears she had about leaving her children and family.

Although Maria appeared to be recovering, her condition took an unexpected turn for the worse as her fever began to rise and she became delirious. Several tests were conducted to identify other potential sources of the infection, and other possible reasons for the delirium. Her symptoms were treated with Haldol and antipyretics. However, within the next day, Maria slipped into a coma and died. At her bedside was found a letter written by Maria to thank her physicians and the members of the palliative team for their care. She said she knew that her illness was advanced and did not expect to regain her health. Maria told her children how much she loved them, to be good for their aunt, and that she would watch over them from heaven. Members of the palliative care team were surprised at her sudden death but also understood the uncertainty of living with advanced AIDS. They had a celebration of her life on the palliative care unit, remembering her special smile, the gratefulness she expressed even for the small comforts offered and how their own lives were touched as they watched her quiet strength even in the face of death.


The care of patients with HIV/AIDS requires both active treatment and palliative care throughout the disease trajectory to relieve the suffering associated with opportunistic infections and malignancies. With up-to-date knowledge regarding HIV, including changes in epidemiology, diagnostic testing, treatment options, and available resources, nurses can offer effective and compassionate care to patients, alleviating physical, emotional, social, and spiritual suffering at all stages of HIV. Patients can maintain a sense of control and dignity until death by establishing a partnership with their healthcare professionals in planning and implementing their healthcare, as well as through advanced care planning to ensure that their end-of-life preferences and wishes are honored. The control of pain and symptoms associated with HIV/AIDS enables the patient and family to expend their energies on spiritual and emotional healing and the possibility for personal growth and transcendence, even as death approaches. Palliative care offers a comprehensive approach to address the physical, emotional, social, and spiritual needs of individuals with incurable progressive illness throughout the illness trajectory until death. Therefore, palliative care preserves patients’ quality of life by protecting their self-integrity, reducing a perceived helplessness, and lessening the threat of exhaustion of coping resources. Through effective and compassionate nursing care, patients with AIDS can achieve a sense of inner well-being even at death, with the potential to make the transition from life as profound, intimate, and precious an experience as their birth.


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