Palliative Care and HIV/AIDS PDF

Patrick Kenny, Carl A. Kirton, Anna Krakowski, & Deborah Witt Sherman 19 Palliative Care and HIV/AIDS C H A P T...

Patrick Kenny, Carl A. Kirton, Anna Krakowski, & Deborah Witt Sherman 19 Palliative Care and HIV/AIDS C H A P T E R KEY POINTS In countries with advanced healthcare, HIV/AIDS is managed as a chronic illness, while in resource poor countries, individuals without access to care are continuing to die from AIDS. HIV and AIDS are not synonymous terms but, rather, refer to the natural history or pro- gression of the infection, ranging from asymptomatic infection to life-threatening illness. The components of high-quality HIV/AIDS palliative care include competent, skilled practitioners; confidential, nondiscriminatory, and culturally sensitive care; flexible and responsive care; collaborative and coordinated care; and fair access to care. The control of pain and symptoms associated with HIV/AIDS enables the patient family to expend their energies on spiritual and emotional healing, and the possibility for personal growth and transcendence even as death approaches. Knowledge regarding HIV disease enables nurses to offer effective and compassionate care to patients and families at all stages of HIV disease. CASE STUDY Terry, a 42-year-old woman, began to have daily episodes of diarrhea. She was admit- ted to the hospital with fever, fatigue, anorexia, nausea and vomiting, and weight loss of 15 lbs over the past 3 weeks. Her significant other was diagnosed with HIV 8 years ago. She was offered antiretroviral therapy (ART) but was nonadherent due to active substance use and is currently not on therapy. She also reported having unprotected sex on several occasions to support her drug habit. Terry’s CD4 count was 70 cells/mm3 with a viral load (VL) of 140,000 copies/mL. Her laboratory work indicated anemia and an elevated alka- line phosphatase. Mycobacterium avium complex (MAC) was confirmed by biopsy with acid fast bacterial (AFB) stain. On physical examination, she had an enlarged spleen, and lymph nodes were palpable in her inguinal area. The diagnosis was advanced-stage AIDS. Terry was begun on an antiretroviral regimen consisting of a protease inhibitor (PI) plus two nonnucleoside reverse transcriptase inhibitors (nNRTIs). She was also treated for MAC with azithromycin and rifabutin. Terry’s mother and sister, although close by, have a poor relationship with her. Terry has a 10-year-old son from a previous relationship; her mother is the legal guardian of her son. Copyright Springer Publishing Company. All Rights Reserved. From: Palliative Care Nursing: Quality Care to the End of Life, Fifth Edition DOI: 10.1891/9780826127198.0019 Matzo_27129_PTR_19_439-458_05-24-18.indd 439 5/24/18 7:37 PM  440 III. PHYSICAL HEALTH: LIFE-THREATENING DISEASES Terry responded well following MAC treatment and her diarrhea improved. However, she still remained weak and found it difficult to climb the stairs of her three-story walk-up apartment. Although Terry is Catholic, she finds little comfort in her faith, believing that her illness is a punishment from God for an abortion she had 2 years ago. Terry is becoming increasingly depressed. The home health aide, which assisted her in the first few weeks after discharge, was no longer available. It became clear to Terry that her life was threatened by the disease and she may never see her child grow up. Despite being on ART, there was little improvement in her CD4 counts or in the lowering of her VL. Terry began to stay in bed for long periods of time during the day. She feared that she was never going to recover and worried about who would care for her son. After some additional testing, the infectious disease physician, who she saw at the AIDS clinic, changed her initial regimen. Terry was also treated with an antidepressant, and within weeks her mood, as well as her appetite, improved. Within 3 months, Terry’s quality of life (QOL) improved because she was free of opportu- nistic infections. Although unemployed, she kept busy with household activities and the care of her son. Even though Terry has two friends, who live in her building, they have their own personal and health-related issues. Terry understands the fragility of her condition, and this time is adherent to her medication regimen. She needs ongoing management of symptoms related to the disease and its treatment, as well as emotional and spiritual support, as she faces her own mortality. I t has been more than 35 years since the beginning of the HIV/AIDS epidemic, yet there remains no cure for this disease that has affected global health. In countries HIV/AIDS, at any stage of the disease. PC offers physi- cal, emotional, social, and spiritual support to promote, maximize, and maintain good QOL of patients and their with advanced healthcare, the development and acces- families. Despite the advent of effective pharmacologi- sibility of ART has significantly reduced the mortality cal therapy and its availability, patients with HIV/AIDS from HIV and has transformed AIDS into a manage- still continue to experience a high burden of pain and able chronic illness, where patients can live long and other chronic symptoms through the disease trajectory, productive lives. The global expansion of access to HIV which presents many PC challenges (Merlins, Tucker, treatment ranks among the great recent achievements Saag, & Selvyn, 2013). in public health. Out of approximately 36.7 million people living with HIV globally today, by mid-2016 an estimated 18.2 million people were receiving ART INCIDENCE AND PREVALENCE therapy (World Health Organization [WHO], 2016). Several countries, those with limited resources, have AIDS has been characterized as a volatile and dynamic reached or are close to achieving “universal access” epidemic, which has spread globally. This epidemic is to ART. Because of easier access of ART and multiple complex due to the virus’s ability to mutate and cross prevention choices, new HIV infections fell by 35%, all socioeconomic, cultural, political, and geographic and AIDS-related death fell by 28% (WHO, 2016). boundaries. As a worldwide epidemic, HIV/AIDS has HIV incidence and mortality rates have been trending ­affected more than 36 million people. In 2015, an e­ stimated down as well. In 2015, there were 1.1 million AIDS- 2.1 million people acquired HIV, with an estimated related deaths, as compared to 1.7 million in 2011 1.1 million people dying from AIDS (WHO, 2016). In (WHO, 2016). the United States, an estimated 1.2 million people are In the past decade the trajectory of HIV/AIDS has changed living with HIV infection, but 1 out of 8 of them do not significantly, shifting to a disease less like cancer and more know that they are infected (Centers for Disease Control like a chronic disease such as diabetes or heart disease. and Prevention [CDC], 2016). Certain groups, including In response to that, the care for people with HIV/AIDS African Americans, Latinos, and gay and bisexual men needed to change as well, bringing palliative care (PC) of all races/ethnicities, continue to be disproportionately to the front along with other treatments. PC for patients affected (CDC, 2016). with HIV/AIDS is an approach to care for patients not Perinatal transmission of HIV has seen a dramatic only in the advanced stage of the illness but also as an decline in the United States. This is largely due to a aspect of care that begins in the early stage of illness highly effective public health initiative focusing on and continues as the disease progresses (Dahlin, 2013). prevention and early intervention for mothers with The goal of PC is to minimize and prevent suffering for HIV. Prior to effective and timely treatment, more than patients who are dealing with serious illness, including 2,000 HIV-infected infants were born each year. Based Matzo_27129_PTR_19_439-458_05-24-18.indd 440 5/24/18 7:37 PM  19. Palliative Care and HIV/AIDS 441 on the most recent data, approximately 8,500 women are known to have HIV has shown to be effective up to living with HIV give birth annually. With such great 80% (CDC, 2014; Marrazzo, 2017). Current data on advances in HIV research, prevention, and treatment, the efficacy and safety of PreEP is not sufficient for the many women living with HIV virus can now give birth to population of adolescents (CDC, 2014). their babies without transmitting the virus. An estimated 21,956 cases of perinatally acquired HIV infections were prevented between 1994 and 2010, with the average of DISEASE TRAJECTORY about 1,372 new cases per year (CDC, 2017). HIV and AIDS are not synonymous terms but, rather, refer to the natural history or progression of the infection, PATHOGENESIS OF HIV ranging from asymptomatic infection to life-threatening illness characterized by opportunistic infections and The HIV virus survives by reproducing itself in a host cancers. Without treatment, this continuum of illness cell, replacing the genetic machinery of that cell, and is associated with progressive immune-system dysfunc- eventually destroying the cell. The HIV is a retrovirus tion (as evidenced by a decrease in CD4 cell count) and whose life cycle consists of (a) attachment of the virus persistent viral replication (as evidenced by a rise in to the cell, which is affected by cofactors that influence plasma HIV-RNA levels). the virus’s ability to enter the host cell; (b) uncoating of The natural history of HIV infection begins with acute the virus; (c) reverse transcription by an enzyme called HIV infection in which the virus enters the body and reverse transcriptase, which converts two strands of replicates in large numbers in the host cell. As a result, viral RNA to DNA; (d) integration of newly synthesized there is a rapid depletion in the number of CD4 cells proviral DNA into the cell nucleus, assisted by the viral and a significant rise in viral replication (as measured by enzyme integrase, which becomes the template for new the VL) during the first 2 weeks of the infection. Within viral components; (e) transcription of proviral DNA 5 to 30 days of infection, 70% of individuals experience into messenger RNA; (f) movement of messenger RNA flu-like symptoms, such as fever, sore throat, skin rash, outside the cell nucleus, where it is translated into viral lymphadenopathy, and myalgia. Other symptoms of proteins and enzymes; and (g) assembly and release of primary HIV infection include fatigue, splenomegaly, mature virus particles out of the host cell (Fan, Conner, & anorexia, nausea and vomiting, meningitis, retro-orbital Villarreal, 2011). pain, neuropathy, and mucocutaneous ulceration (Pilcher, These newly formed viruses have an affinity for any Eron, Galvin, Gay, & Cohen, 2004). Within 6 to 12 weeks cell that has the CD4 molecule on its surface, such as of the initial infection, the production of HIV antibod- T lymphocytes and macrophages, and become major viral ies results in seroconversion. If tested at this time, the targets. Because CD4 cells are the master coordinators patient will be diagnosed as HIV positive. of the immune-system response, the chronic destruction Clinical latency refers to the chronic, clinically of these cells severely compromises individuals’ immune ­asymptomatic state in which there is a decreased VL status, leaving the host susceptible to opportunistic and resolution of symptoms of acute infection. At this ­infections and eventual progression to AIDS. point, there is continuous viral replication in the lymph Since the identification of the first case of HIV in nodes with more than 10 billion copies of the virus be- 1981, there has been significant scientific advancements ing made every day. made in the diagnosis and treatment of the disease; After years of HIV infection, the individual enters a specifically, the virus has been identified; screening for stage that is apparent by conditions indicative primar- HIV infection has been implemented; biological and ily of defects in cell-mediated immunity. Symptomatic behavioral cofactors have been identified related to infection generally occurs when CD4 counts fall below infection and disease progression; prophylactic treat- 500 cells/mm3, which indicates the progression of HIV ments are available to prevent opportunistic infections; disease. Symptoms of advancing HIV infection include HIV-RNA quantitative assays have been developed to oral candidiasis and hairy leukoplakia as well as ulcer- measure VL; combination ARTs are available to treat ative lesions of the mucosa. Gynecological infections the infection; and vaccines are being tested (Fan et al., are common in women with HIV disease as well as 2011). Pre-exposure prophylaxis (PreEP) has become dermatological manifestations, which include bacterial, an important part of HIV prevention ever since it was fungal, viral, neoplastic, and other conditions such as approved by the U.S. Food and Drug Administration exacerbation of psoriasis, severe pruritus, or the develop- (FDA) in 2012. Daily regimen with tenofovir disoproxil ment of recurrent pruritic papules (CDC, 2013; Lazenby, fumarate (TDF) regimen recommended for sexually 2012; Oramasionwu et al., 2012). active adults at a substantial risk of HIV acquisition, When the CD4 count drops below 200 cells/mm3, men who have sex with men (MSM), heterosexually HIV infection now meets one of the Centers for Disease active men and women, adult injection-drug users, and Control and Prevention’s definitions of AIDS (CDC, heterosexually active women and men whose partners 2013). With AIDS, patients often experience several Matzo_27129_PTR_19_439-458_05-24-18.indd 441 5/24/18 7:37 PM  442 III. PHYSICAL HEALTH: LIFE-THREATENING DISEASES opportunistic infections or cancers (see the following complex care issues because they experience bouts of discussion). When the CD4 cell count drops below severe illness and debilitation alternating with periods 50 cells/mm3, the immune system is so impaired that of symptom stabilization. both HIV- and non-HIV-related infections become commonplace. With advanced disease, individuals may experience symptomatic health problems such as shortness HIV/AIDS AND PALLIATIVE CARE of breath from pneumonia, difficulty swallowing from oral candidiasis, depression, dementia, skin infections, PC is the comprehensive management of the physical, anxiety, incontinence, fatigue, isolation, bed dependency, psychological, social, spiritual, and existential needs of wasting syndrome, and significant pain. patients with incurable progressive illness (Dahlin, 2013). PC has become an important component of AIDS care AIDS-Related Opportunistic Infections from diagnosis to death, involving ongoing prevention, and Comorbidities health promotion, and health maintenance to promote the patient’s QOL throughout the illness trajectory. Opportunistic infections are the greatest cause of mor- The components of high-quality HIV/AIDS PC, as bidity and mortality in individuals with HIV disease. identified by healthcare providers, include competent, Given the compromised immune system of HIV-infected skilled practitioners; confidential, nondiscriminatory, individuals, there is a wide spectrum of pathogens that and culturally sensitive care; flexible and responsive can produce primary, life-threatening infections, particu- care; collaborative and coordinated care; and fair larly when the CD4 cell counts fall below 200 cells/mm3. ­access to care. Resources aimed at prevention, health Given the weakened immune systems of HIV-infected promotion and maintenance, symptom surveillance, persons, even previously acquired infections can be and end-of-life (EOL) care are essential (Gysels et al., reactivated. Most of these opportunistic infections are 2013). The treatment of not only chronic debilitating incurable and can at best be palliated to control the conditions but also superimposed acute opportunistic acute stage of infection and prevent recurrence through infections and related symptoms is necessary to main- long-term suppressive therapy. In addition, patients with tain a good QOL. As one example, health prevention HIV/AIDS often experience concurrent or consecutive measures, such as ongoing intravenous (IV) therapies opportunistic infections and various malignancies that to prevent blindness from cytomegalovirus (CMV) are severe and cause a great number of symptoms. A retinitis, must be available to patients with AIDS to large Veterans Aging Cohort Study that compared maintain their QOL. HIV-infected patients (n = 30,564) with uninfected The precepts of PC include comprehensive care with patients (n = 68,123) showed that HIV-infected respect for patient goals, preferences, and choices, and patients had a higher risk for non-AIDS-related dis- acknowledgment of caregivers’ concerns (Dahlin, 2013). eases and cardiovascular, renal, and non-AIDS-defining These precepts are fundamental in addressing the com- cancers than the uninfected patients, but the onset of plex needs of patients and families with HIV/AIDS and those diseases occurred at similar ages in both groups require the coordinated care of an interprofessional PC (Althoff et al., 2015). Also, the overall proportion of team, involving physicians, advanced practice nurses, deaths that are attributed to non-AIDS diseases has not staff nurses, social workers, dietitians, physiotherapists, only remained significantly higher, but has increased, and clergy. Therapeutic interventions and decisions for as opposed to deaths due to AIDS-related diseases. In a patients with advanced AIDS should not only include the recent retrospective multicohort collaboration review of patient’s expectations, preferences, and goals, but also underlying causes of death in people with HIV between the benefits and burdens of antiretroviral therapy, and 1999 and 2011, Smith et al. (2014) found that only 29% advance care planning as part of the clinical discussions of deaths were AIDS related, with the remaining causes and planning for the future (Houben, Spruit, Groenen, contributing to non-AIDS-defining cancers (15%), liver Wouters, & Janssen, 2014). Healthcare personnel taking disease (13%), and cardiovascular disease (11%). In care of patients with advanced AIDS should, in addition 2014 only half of the deaths were related directly to to the medical management and providing adequate relief HIV (CDC, 2016). from pain, maintain hope while helping the patient and In 2015 almost 80% of patients diagnosed with HIV his or her family to confront the chronic and terminal were aged 20 to 49, followed by patients aged 50 years nature of the illness. Healthcare providers and patients and older (17%; CDC, 2016). Increasing age, comorbid must determine the balance between aggressive and conditions, and markers of functional status are more supportive efforts, particularly when increasing debility, predictive of mortality than traditional HIV-prognostic wasting, and deteriorating cognitive function are evident variables (Justice, 2010; Piggott et al., 2013). AIDS in the face of advanced disease. As the unit of care is involves multiple symptoms not only from the disease the patient and his or her family, the PC team offers processes but also from the side effects of medications support not only for patients to live as fully as possible and other therapies. Patients with AIDS present with until death but also for the family to help them to cope Matzo_27129_PTR_19_439-458_05-24-18.indd 442 5/24/18 7:37 PM  19. Palliative Care and HIV/AIDS 443 during the patient’s illness and in their own bereavement of opportunistic infections, functional status, and statisti- (Dahlin, 2013). cal prognosis (HIV Disease, 2017). These criteria give Although the hospice and PC movement developed as a better understanding of the patient’s prognosis and a community response to those who were dying, primar- needs. Hospices are offering the necessary support to ily of cancer, the advent of the AIDS epidemic made it patients with AIDS at the end of life. Different models necessary for hospices to begin admitting patients with of PC are being developed, including partnerships with AIDS. This meant applying the old model of cancer community hospitals or agencies. care to patients with a new infectious, progressive, and terminal disease. Unlike the course of cancer, which is Assessment of Patients With HIV/AIDS relatively predictable once the disease progresses beyond cure, AIDS patients experience a series of serious and Throughout the course of their illness, individuals with sometimes life-threatening opportunistic infections. With HIV disease require primary care services to identify appropriate treatment offered, there may be resolution early signs of opportunistic infections and to minimize of an AIDS-related illness or chronic therapy may be related symptoms and complications. This includes a necessary. Therefore, the underlying goal of AIDS care complete health history, physical examination, and labo- remains one of palliation. ratory data including determination of immunological The predominant thinking is of HIV disease as a chronic and viral status. illness. Both public and private third-party payers have reimbursed for EOL care when physicians have verified Health History. In the care of patients with HIV/ a life expectancy of less than 6 months. However, private AIDS, the health history should include the following third-party payers are not required to provide hospice (Sherman, 2006): or PC services. Yet, generally speaking, comprehensive AIDS care is publicly funded. While no studies exist that History of present illness, including a review of those examine the cost of AIDS-related palliative or hospital factors that led to HIV testing care, the cost of care in cities with large HIV popula- Past medical history, particularly those conditions that tions indicate that as CD4 cells decline, particularly less may be exacerbated by HIV disease or its treatments, than 50 cells/mm3, annual healthcare expenditures are such as diabetes mellitus, hypertriglyceridemia, or 2.6 times greater than expenditures for patients with chronic or active hepatitis B infection CD4 greater than 350 cells/mm3. Early diagnosis of Childhood illnesses and vaccinations for preventing HIV and initiation of treatment leads to the prevention common infections such as polio, DPT, or measles of complications. Although it does increase the lifetime Medication history, including the patient’s knowl- costs of treating the illness, at the same time it reduces edge of the types of medications, side effects, adverse the number of new infections by 50% and improves reactions, drug interactions, and administration length and QOL (Farnham et al., 2013). recommendations An additional barrier to PC are the patients themselves. Sexual history, regarding sexual behaviors and prefer- There is a need to shift the perception of PC as only EOL ences and the history of sexually transmitted diseases, care and to promote PC as an aggressive approach to which can exacerbate HIV disease progression enhance QOL throughout the course of the illness. Over Lifestyle habits, such as the past and present use of the years, there have been public initiatives and media recreational drugs, including alcohol, which may campaigns to improve the care of the seriously ill in the ­accelerate progression of disease, and cigarette smok- United States and to inform patients and families about ing, which may suppress appetite or be associated the availability of PC across healthcare settings. with opportunistic infections such as oral candidiasis, A review of the evidence of barriers and inequality hairy leukoplakia, and bacterial pneumonia in HIV care by Harding et al. (2005) found that there is Dietary habits, including risks related to foodborne increased complexity in the balance of providing concur- illnesses such as hepatitis A rent curative and palliative therapies given the prolon- Travel history, to countries in Asia, Africa, and South gation of life span as a result of ART therapy. Harding America, where the risk of opportunistic infections and colleagues propose the need for multidimensional increases PC assessment for different populations; basic PC skills Complete systems review, to provide indications of training for all clinical staff in standard assessments; the clinical manifestations of new opportunistic infections development of referral criteria and systems for patients or cancers as well as AIDS-related complications from with complex PC needs; and the availability of specialist both the disease and its treatments consultation across all settings. When patients are in the advanced stage of AIDS, the Physical Examination. A physical examination should following criteria are considered regarding the admis- begin with a general assessment of vital signs and height sion to hospice: CD4 count of less than 25 cells/mm3, and weight as well as the overall appearance and mood. A persistent VL of more than 100,000 copies/mL, history complete head-to-toe assessment is important and may reveal Matzo_27129_PTR_19_439-458_05-24-18.indd 443 5/24/18 7:37 PM  444 III. PHYSICAL HEALTH: LIFE-THREATENING DISEASES various findings common to individuals with HIV/AIDS patients who have HIV-RNA levels less than 500 to such as the following (Sherman, 2006): 1,000 copies/mL, viral amplification for resistance testing may not always be successful Oral cavity assessment may indicate candida, oral hairy leukoplakia, or Kaposi sarcoma (KS). The HHS’s (2013) panel on clinical practices for Funduscopic assessment may reveal visual changes the treatment of HIV recommends that the CD4 count associated with CMV retinitis; glaucoma screening and the VL be measured upon entry into care and every annually is also recommended. 3 to 6 months subsequently. Immediately before a patient Lymph node assessment may indicate adenopathy is started on ART, the patient’s HIV-RNA (VL) should detected at any stage of the disease. be measured, and again 2 to 8 weeks after treatment is Dermatological assessment may indicate various initiated, to determine the effectiveness of the therapy. cutaneous manifestations that occur throughout the With adherence to the medication schedule, it is expected course of the illness such as HIV exanthema, KS, or that the HIV-RNA will decrease to undetectable levels infectious complications such as dermatomycosis. (less than 50 copies/mL) in 16 to 24 weeks after the Neuromuscular assessment may determine various initiation of therapy (HHS, 2013). If a patient does not central, peripheral, or autonomic nervous system significantly respond to therapy, the clinician should disorders and signs and symptoms of conditions such evaluate adherence, repeat the test, and rule out mal- as meningitis, encephalitis, dementia, or peripheral absorption or drug–drug interactions. neuropathies. The decision regarding laboratory testing is based on Cardiovascular assessment may reveal cardiomyopathy. the stage of HIV disease, the medical processes warranting Gastrointestinal assessment may indicate organo- initial assessment or follow-up, and consideration of the megaly, specifically splenomegaly or hepatomegaly, patient benefit-to-burden ratio (Sherman, 2006). Complete particularly in patients with a history of substance blood counts are often measured with each VL determina- abuse as well as signs related to parasitic intestinal tion or with a change in ART, particularly with patients infections. Annual stool guaiac analysis and rectal on drugs known to cause anemia. Chemistry profiles are examination, as well as sigmoidoscopy every 5 years, done to assess liver function, lipid status, and glycemia are also parts of health maintenance. every 3 to 6 months or with a change in therapy, and are Reproductive system assessment may reveal occult determined by the patient’s ART, baseline determinations, sexually transmitted diseases or malignancies, as and coinfections. Abnormalities in these profiles may o ­ ccur well as vaginal candidiasis, cervical dysplasia, pelvic as a result of ART. Increasing hepatic dysfunction is evi- inflammatory disease, or rectal lesions in women with dent by elevations in the serum transaminases (aspartate HIV/AIDS as well as urethral discharge and rectal aminotransferase [AST], alanine transaminase [ALT], and lesions or malignancies in HIV-infected men. Health bilirubin). Blood work should also include hepatitis C maintenance in individuals with HIV/AIDS also serology (antibody), hepatitis B serology, and Toxoplasma includes annual mammograms in women older than immunoglobulin G (IgG) serology (HHS, 2013). 40 years, as well as testicular examinations in men, Urine analysis should be done annually unless the and prostate screening examinations as per current person is on ART, which may require more frequent recommendations. follow-up to check for toxicity. Syphilis studies should be done annually; however, patients with low positive Laboratory Data. Evaluation of these laboratory data titers should have follow-up testing at 3, 6, 9, 12, and is important in assisting the healthcare practitioner in 24 months. Gonorrhea and chlamydia tests are encour- making therapeutic decisions. The following laboratory aged every 6 to 12 months if the patient is sexually active. tests performed during initial patient visits can be used ­Annual Papanicolaou (Pap) smears are also indicated, with to stage HIV disease and to select ART (Department of recommendations for Pap smears every 3 to 6 months in Health and Human Services [HHS], 2013): HIV-infected women who are symptomatic. In addition, HIV-infected persons should be tested for IgG antibody to HIV antibody testing (if prior documentation is not Toxoplasma soon after the diagnosis of HIV infection to available or if HIV-RNA is below the assay’s limit detect latent infection with Toxoplasma gondii. Toxoplasma of detection) seronegative persons who are not taking a primary care CD4 T-cell count (CD4 count) provider (PCP) prophylactic regimen known to be active Plasma HIV-RNA (VL) against toxoplasma encephalitis (TE) should be retested Complete blood count, chemistry profile, transaminase for IgG antibody to Toxoplasma when their CD4+ counts levels, blood urea nitrogen (BUN), and creatinine, uri- decline to less than 100 cells/mm3 to determine whether nalysis, and serologies for hepatitis A, B, and C viruses they have seroconverted and are therefore at risk of TE Fasting blood glucose and serum lipids (CDC, 2013). Genotypic resistance testing at entry into care, regard- Individuals should be tested for latent tuberculosis less of whether ART will be initiated immediately; for infection (LTBI) at the time of their HIV diagnosis, Matzo_27129_PTR_19_439-458_05-24-18.indd 444 5/24/18 7:37 PM  19. Palliative Care and HIV/AIDS 445 regardless of their TB risk category, and then annually of HIV-1 to the host cell by blocking one of several if negative. LTBI diagnosis can be achieved with the use targets. Maraviroc and enfuvirtide are the two cur- of tuberculin skin test (TST) or by interferon gamma rently available agents in this class. release assay (IGRA) using the patient’s serum. A TST is considered positive in patients with induration of greater When patients are naïve to ART, it is recommended than or equal to 5 mm. An IGRA is reported as positive that they begin a combination antiretroviral regimen. or negative. Any positive test warrants chest radiograph Preferred regimens are either nNRTI based, PI based, or for active disease and consideration of antituberculo- integrase inhibitor based. The exact combinations recom- sis therapy based on history, laboratory, physical, and mended change based on the emergence of high-quality ­radiographic findings. evidence that supports its use. The reader should refer to the HHS website to obtain the latest recommendations (aidsinfo.nih.gov/guidelines). The goal of the therapy is Management of HIV/AIDS maximal VL suppression. If there is insufficient viral suppression, which is The Use of Antiretroviral Therapy. The goal of ART evidenced by an increase in VL, inadequate increase in is to slow the disease progression and limit the occur- CD4 cell counts, evidence of disease progression, adverse rence of opportunistic infections. ART is administered clinical effects of therapy, or compromised adherence to maximize long-term suppression of HIV-RNA and caused by the inconvenience of difficult regimens, it restore or preserve immune-system function, thereby is appropriate to consider a change in the medication reducing morbidity and mortality and promoting QOL regimen. The decision to change therapy involves the (HHS, 2016). Historically, the assessment of CD4 cell consideration of whether other drug choices are avail- count was used to determine the initiation of ART, able, the results of baseline resistance assays, and the with ART primarily reserved for CD4 counts below patient’s commitment to adhere to the therapy. 350 cells/mm3. Currently, HIV therapy is recommended The criteria for considering changing a patient’s an- for all HIV patients regardless of CD4 cell count (HHS, tiretroviral regimen include the following (HHS, 2013): 2013). When initiating therapy, consideration must be given to toxicities associated with certain antiretroviral When there is virologic or incomplete failure; when the medications, such as elevations in serum levels of triglyc- HIV VL fails to fall to a level less than 200 c­ opies/mL erides and cholesterol, alterations in fat distribution, or or less than 50 copies/mL by 48 weeks after s­ tarting insulin resistance and diabetes mellitus. However, the therapy; when there is virologic rebound, that is, benefits of early therapy include earlier suppression of when there is HIV-RNA greater than 200 copies after viral replication, preservation of the immune-system complete suppression functioning, prolongation of disease-free survival, and When there is immunologic failure, persistent decline a decrease in the risk of HIV transmission (HHS, 2013). in CD4 cell, or failure to achieve an adequate CD4 response despite virologic suppression Classifications of Antiretroviral Therapies The occurrence or recurrence of HIV-related events and Recommendations after at least 3 months on an antiretroviral regimen (excluding immune reconstitution syndrome) Antiretroviral drugs are broadly classified by the phase of the retrovirus life cycle that the drug inhibits. Specifi- A change in an antiretroviral regimen can also be cally, they act in the following ways: guided by drug-resistance tests, such as genotyping and phenotyping assays. Consultation with an HIV specialist Nucleoside reverse transcriptase inhibitors (NRTIs) is often of value. interfere with the action of an HIV protein called reverse transcriptase, which the virus needs to make Considerations Relevant to Antiretroviral new copies of itself. Therapy in Palliative Care Non-nucleoside reverse transcriptase inhibitors (NNRTIs) inhibit reverse transcriptase directly by Clinicians must consider possible drug interactions binding to the enzyme and interfering with its function. with the administration of drugs in the treatment of PIs target viral assembly by inhibiting the activity of HIV/AIDS and relief of symptoms. Pharmacokinetic protease, which is an enzyme used by HIV to cleave interactions occur when the administration of one agent nascent proteins for final assembly of new virions. changes the plasma concentration of another agent. Integrase inhibitors inhibit the enzyme integrase, which Pharmacodynamic interactions also occur when a drug is responsible for the integration of viral DNA into interacts with the biologically active sites and changes the DNA of the infected cell. the pharmacological effect of the drug without altering Entry inhibitors (fusion inhibitors and CCR5 a ­ nt- the plasma concentration. In PC, drug interactions have agonists) interfere with binding, fusion, and entry been reported for patients who are receiving methadone Matzo_27129_PTR_19_439-458_05-24-18.indd 445 5/24/18 7:37 PM  446 III. PHYSICAL HEALTH: LIFE-THREATENING DISEASES for pain management and who begin therapy with an completed the Memorial Symptom Assessment Scale, nNRTI, nevirapine. These individuals have reported which is designed to estimate the prevalence, severity, symptoms of opioid withdrawal within 4 to 8 days of and distress of each symptom and global symptom bur- beginning nevirapine due to its effect on the cytochrome den. The median number of symptoms was nine, and P-450 (CYP) metabolic enzyme CYP3A4 and its induction symptoms experienced by more than half the sample of methadone metabolism (HHS, 2013, 2016). population included lack of energy (65%), drowsiness Furthermore, patients and healthcare providers should (57%), difficulty sleeping (56%), and pain (55%). Global discuss the continuation of ART in hospice or pallia- symptom burden was unrelated to age or CD4 cell count. tive settings. Such decisions are often contingent on the Those with an AIDS diagnosis had significantly higher feelings of patients regarding the therapy. Patients may symptom burden scores as did those currently receiving be asked such questions as “How do you feel when you ART. According to Lee et al. (2009), African Americans take your antiretroviral medications?” Patients who enter reported fewer symptoms than whites or mixed/other hospice may have a greater acceptance of their mortal- race, and women reported more symptom burden after ity and may wish to stop antiretrovirals because of the controlling for AIDS diagnosis and race. side effects. However, patients may wish to continue Symptom and comfort measures at the end of life for ART because of its symptom relief and the prevention HIV-infected patients share many of the features seen of future symptoms related to opportunistic infections. in non-HIV-infected patients at the end of life because Alexander (2011) has recommended that antiretrovirals a large percentage of late-stage AIDS patients are now be discontinued if the drugs cause burdensome symptoms dying of non-AIDS-defining illnesses. Therefore, the or the patient no longer wants to use the drug. However, translation of basic principles in pain and symptom if the patient is asymptomatic and wishes to continue management should be used for HIV-infected patients with ART, medications should be continued with close at the end of life (Fausto & Selwyn, 2011). clinical assessment. Facilitating discussion of benefits and The five broad principles fundamental to successful burdens of ART is an important aspect of PC, and the symptom management have not changed since first decision to discontinue ART for hospice patients with described and published by Newshan and Sherman in AIDS should be a part of comprehensive PC. 1999. These principles are: (a) taking the symptoms seri- In the hospice and PC settings, it is important for ously, (b) assessment, (c) diagnosis, (d) treatment, and clinicians to discuss with patients and families their (e) ongoing evaluation (Newshan & Sherman, 1999). goals of care to make important decisions regarding Patient’s self-report of symptoms should be taken seri- the appropriateness of curative, palliative, or both types ously by the practitioner and acknowledged as a real of interventions. More specifically, examples of clinical experience of the patient. An important rule in symptom decisions regarding PC or disease-specific treatment management is to anticipate the symptom and attempt include: (a) consideration of risks versus benefits of treat- to prevent it. The assessment and diagnosis of signs ments, like the use of blood transfusions; (b) the use of and symptoms of disease and treatment of side effects psychostimulants, or corticosteroids, to treat fatigue in require a thorough history and physical examination. patients with late-stage AIDS; (c) the use of aggressive Questions as to when the symptom began and its loca- antiemetic therapy for PI-induced nausea and vomit- tion, duration, severity, and quality, as well as factors ing; (d) continuation versus discontinuation of ARTs that exacerbate or alleviate the symptom, are important that may result in severe side effects; (e) continuation to ask. Patients can also be asked to rate the severity of a of suppressive therapy; and (f) the use of prophylactic symptom by using a numerical scale from 0 to 10, with medications in dying patients. 0 being no symptom to 10 being extremely severe. Such scales can also be used to rate how much a symptom Symptom Management in HIV Disease interferes with activities of daily life, with 0 meaning no interference and 10 meaning extreme interference. One Patients with HIV/AIDS require symptom management of the most frequently used tools to assess symptoms not only for chronic debilitating opportunistic infections is the ­Edmonton Symptom Assessment Scale (ESAS), a and malignancies but also for the side effects of treat- ­validated and reliable instrument to assist in the assessment ments and other therapies. Personal characteristics that of nine common symptoms: pain, tiredness, drowsiness, interact with both HIV diagnosis and its medical man- nausea, appetite, shortness of breath, depression, anxi- agement can influence symptom experience. The most ety, and well-being. When using this tool, patients who prevalent symptoms in the AIDS population are fatigue score greater than seven have a self-defined symptom (54%–85%), pain (63%–80%), nausea (43%–49%), burden, meaning that their symptoms significantly impact and constipation (34%–35%); other symptoms include their physical, emotional, and social functioning. Use depression, breathlessness, insomnia, diarrhea, anorexia, of this tool is a simple and effective method of assess- and anxiety (Solano, Gomes & Higginson, 2006). In a ing the impact of select symptoms on individual QOL prospective longitudinal study, 317 men and women (Selby et al., 2011). When a patient seeks medical care living with HIV/AIDS in the San Francisco Bay Area for a specific symptom, the clinician should conduct a Matzo_27129_PTR_19_439-458_05-24-18.indd 446 5/24/18 7:37 PM  19. Palliative Care and HIV/AIDS 447 focused history including any past medical illnesses that such as antibacterials (e.g., isoniazid, ethambutol), may exacerbate HIV disease, a comprehensive physical ­chemotherapy, radiation, surgery, and procedures (Lorenz, ­examination, and judicious diagnostic testing. A detailed Cunningham, Spritzer, & Hays, 2006). Patients may be assessment of current medications, chemotherapy and suffering from inflammatory or infiltrative processes and radiation therapy, or complementary therapies such somatic and visceral pain. Studies have also shown that as biofeedback, herbal therapies, or yoga should also patients with moderate-to-severe chronic pain are more be ascertained to determine the effects and side effects likely to be severely depressed and are more likely to of treatment, and to prevent drug interactions. In the be taking antidepressant medications and prescription case of extremely advanced disease, practitioners must opioids (Uebelacker et al., 2015). Frequent reassessment reevaluate the benefits versus burden of diagnostic test- of pain to evaluate the effectiveness of pain therapy is ing and treatments, particularly the need for daily blood very important in providing quality PC. draws or more invasive and uncomfortable procedures. Following a complete assessment, including a history When the decision of the practitioners, patient, and and physical examination, an individualized pain manage- family is that all testing and aggressive treatments are ment plan should be developed to treat the underlying more burdensome than beneficial, their discontinuation cause of the pain, often arising from underlying infec- is warranted. Ongoing evaluation of the effectiveness of tions associated with HIV disease. The principles of pain traditional, experimental, and complementary therapies ­management in the PC of patients with AIDS are the is the key to symptom management. Changes in therapies same as for patients with cancer and include regularity of are often necessary because concurrent or sequential dosing, individualization of dosing, and the use of com- illness or conditions occur. binations of medications. The three-step guidelines for In an article regarding the symptom experience of pain management as outlined by WHO should be used patients with HIV/AIDS, Holzemer (2002) emphasized for patients with HIV disease. This approach advocates a number of key tenets, specifically (a) the patient is the for the selection of analgesics based on the severity of gold standard for understanding the symptom experi- pain. For mild-to-moderate pain, anti-inflammatory drugs ence; (b) patients should not be labeled asymptomatic such as nonsteroidal anti-inflammatory drugs (NSAIDs) early in the course of the infection because they often or acetaminophen are recommended. However, the use experience symptoms of anxiety, fear, and depression; of NSAIDs in patients with AIDS requires the aware- (c) nurses are not necessarily good judges of patients’ ness of toxicity and adverse reactions because they are symptoms, as they frequently underestimate the frequency highly protein bound, and the free fraction available is and intensity of HIV signs and symptoms; however, fol- increased in AIDS patients who are cachectic or wasted. lowing assessment, they can answer specific questions For moderate-to-severe pain that is persistent, opioids about a symptom, such as location, intensity, duration, of increasing potency are recommended, beginning with and so forth; (d) nonadherence to treatment regimens opioids such as codeine, hydrocodone, or oxycodone, is associated with greater frequency and intensity of each available with or without aspirin or acetaminophen, symptoms; (e) greater frequency and intensity of symp- and advancing to more potent opioids such as morphine, toms leads to lower QOL; (f) symptoms may or may not hydromorphone (Dilaudid), methadone (Dolophine), or correspond with physiological markers; and (g) patients fentanyl either orally, intravenously, or transdermally. use few self-care symptom management strategies other In conjunction with NSAIDs and opioids, adjuvant than medication. therapies are also recommended (Trescot et al., 2008), such as the following: Pain in HIV/AIDS Tricyclic antidepressants, heterocyclic and noncyclic Pain syndromes in patients with AIDS are diverse in nature antidepressants, and serotonin reuptake inhibitors and etiology. For patients with AIDS, pain is a common for neuropathic pain symptom, which often becomes chronic in nature and Psychostimulants to improve opioid analgesia and can occur in more than one site. Patients may experience decrease sedation neuropathic pain, such as peripheral neuropathy resulting Phenothiazine to relieve associated anxiety or agitation from the use of ARTs, or from nerves directly damaged Butyrophenones to relieve anxiety and delirium by HIV itself, as well as pain in the abdomen, oral cavity, Antihistamines to improve opioid analgesia and relieve esophagus, skin, perirectal area, chest, joints, muscles, anxiety, insomnia, and nausea and headache. A systematic review completed by Parker, Corticosteroids to decrease pain associated with an Stein, and Jelsma (2014) reports that pain in the lower inflammatory component or with bone pain limbs is the most frequently reported pain, followed by Benzodiazepines for neuropathic pain, anxiety, and headache and neck pain. In terms of the intensity of the insomnia pain, most patients reported moderate-to-severe pain, which had significant impact on their QOL (Parker et al., Caution is noted, however, with use of PIs because they 2014). Pain can also be related to HIV/AIDS therapies may interact with some analgesics. For example, ritonavir Matzo_27129_PTR_19_439-458_05-24-18.indd 447 5/24/18 7:37 PM  448 III. PHYSICAL HEALTH: LIFE-THREATENING DISEASES has been associated with potentially lethal interactions et al. (2008) found that more than 90% of inner-city, with meperidine, propoxyphene, piroxicam, codeine, middle-aged, heterosexual women and men (n = 93) hydrocodone, oxycodone, and methadone, increasing who were at risk for or who had HIV infection reported their levels, resulting in drug toxicity. F ­ urthermore, the use of complementary and alternative therapies for patients with HIV disease who have high fever, the in the prior 6 months. The 10 most commonly used increase in body temperature may lead to an increased complementary therapies and activities reported by 1,106 absorption of transdermally administered fentanyl, lead- participants in the alternative medical care outcomes ing to toxic levels of drug. in AIDS study were aerobic exercise (64%), prayer To ensure appropriate dosing when changing the (56%), massage (54%), needle acupuncture (48%), route of administration of opioids, or changing from meditation (46%), support groups (42%), visualiza- one opioid to another, the use of an equianalgesic tion and imagery (34%), breathing exercises (33%), conversion chart is suggested (see Table 20.8). As with spiritual activities (33%), and other exercises (33%; all patients, oral medications should be used, if pos- Milan et al., 2008). Nurses’ knowledge, evaluation, and sible, with around-the-clock (ATC) dosing at regular recommendations regarding complementary therapies intervals, and the use of rescue doses for breakthrough are important aspects of holistic care. pain. Often, controlled-release morphine or oxycodone are effective drugs for patients with chronic pain from HIV/AIDS. Taking under consideration that patients HEALTH PROMOTION RELATED TO HIV/AIDS with HIV infection take several medications per day, minimizing the number of medications is the best option. With no current cure, the health management of patients Sustained-release opioids can provide 8 to 12 hours of with HIV/AIDS is directed toward controlling HIV dis- analgesia, whereas transdermal opioids do not require ease and prolonging survival, while maintaining QOL taking the pills at all. In the case of neuropathic pain, (Burgoyne & Tan, 2008). QOL is associated with health often experienced with HIV/AIDS, tricyclic antidepres- maintenance for individuals with HIV/AIDS, particularly sants such as amitriptyline, or anticonvulsants such as as it relates to physical and emotional symptoms and Neurontin, can be very effective (Trescot et al., 2008). functioning in activities of daily living as well as social However, the use of neuroleptics must be weighed functioning (Vigneshwaran, Padmanabhareddy, Devanna, against an increased sensitivity of AIDS patients to the & Alvarez-Uria, 2013). QOL is based on the patient’s extrapyramidal side effects of these drugs. In addition perceptions of his or her ability to control the physical, to opioids and adjuvant medications, such as tricyclic emotional, social, cognitive, and spiritual aspects of the antidepressants or anticonvulsants, the use of cannabis has illness. In a study regarding the functional QOL of 142 men shown symptom-relieving benefits from neuropathic pain, and women with AIDS, Vosvick et al. (2003) concluded stress, and anorexia (Harris et al., 2014). Unfortunately, that maladaptive coping strategies were associated with the use of cannabis for medical purposes, especially for lower levels of energy and social functioning and that patients with HIV/AIDS, poses many challenges, because severe pain interfered with daily living tasks and was of the significant overlap between the use of medicinal associated with lower levels of functional QOL (physical cannabis versus recreational use that may precede the functioning, energy/fatigue, social functioning, and role HIV diagnosis (Harris et al., 2014). functioning). Therefore, health-promotion interventions If the cause of pain is the increasing tumor size, should be aimed at developing adaptive coping strategies radiation therapy can also be very effective in pain and improving pain management. management by reducing the tumor size as well as the perception of pain. In cases of refractory pain, nerve blocks are available through neurosurgical procedures Health Promotion for pain management. Increasingly, epidural analgesia is an additional option that provides continuous pain relief. In the management of HIV/AIDS, it is important to In addition to pharmacological management of pain prevent or decrease the occurrence of opportunistic and other symptoms, clinicians may consider the value infections and AIDS-indicator diseases. HIV manage- of nonpharmacological interventions such as bed rest, ment therefore involves health promotion and disease simple exercise, heat or cold packs to affected sites, prevention. In addition to the treatment of AIDS-related massage, transcutaneous electrical stimulation (TENS), diseases and associated symptoms, PC involves prophy- and acupuncture. Psychological interventions to reduce lactic interventions and the prevention of behaviors that pain perception and interpretation include hypnosis, promote disease expression (Bolin, 2006). ­relaxation, imagery, biofeedback, distraction, art therapy, Through all stages of HIV disease, health can be and patient education. promoted and maintained through diet, micronutrients, Patients with HIV disease seek complementary exercise, reduction of stress and negative emotions, therapies to treat symptoms, slow the progression of symptom surveillance, and the use of prophylactic thera- the disease, and enhance their general well-being. Milan pies to prevent opportunistic infections or AIDS-related Matzo_27129_PTR_19_439-458_05-24-18.indd 448 5/24/18 7:38 PM  19. Palliative Care and HIV/AIDS 449 complications. A health-promoting diet is essential for Summarizing the importance of exercise in HIV dis- optimal functioning of the immune system. Cell-mediated ease, Hand, Lyerly, Jaggers, and Dudgeon (2009) con- immunity, phagocytic function, and antibody response cluded that moderate- to high-intensity aerobic exercise are impaired by deficiencies in diet, including low protein combined with a resistance exercise regimen is safe and intake. Alteration in nutrition leads to secondary infections, favorable and results in changes in body composition, disease progression, psychological distress, and fatigue. muscular strength, improved depression and anxiety, In patients with AIDS, common nutritional problems and improving QOL. are weight loss, vitamin and mineral deficiencies, loss of Stress and negative emotions are also associated with muscle mass, and loss or redistribution of fat mass. With immune suppression and increase an individual’s vulner- the administration of ART, there is the possibility of re- ability to infections. For patients living with HIV/AIDS, distribution of fat, characterized by increased a­ bdominal there is stress related to the uncertainty regarding illness girth, loss of fat from the face, and a ­“buffalo hump” progression and prognosis, stigmatization, discrimina- on the back of the neck (Keithley, Swanson, Murphy, & tion, financial concerns, and increased disability as the Levin, 2000). Diseases of the mouth and oropharynx, disease progresses. Individuals with AIDS frequently such as oral candidiasis, annular cheilitis, gingivitis, cite the avoidance of stress as a way of maintaining a herpes simplex, and hairy leukoplakia, may limit oral sense of well-being (Antoni, 2003). Based on a study of intake. Diseases of the GI tract that can cause malab- 96 HIV-infected homosexual men without symptoms sorption include CMV, MAC, cryptosporidiosis, and KS. or antiretroviral medication use, Leserman et al. (2002) These diseases are experienced in individuals with CD4 reported that higher cumulative average stressful life counts of 50 cells or less and may adversely affect their events, higher anger scores, lower cumulative average nutritional status (Crum-Cianfione, 2010). Metabolic social support, and depressive symptoms predicted a alterations may be due to HIV infection or secondary faster progression to both the CDC AIDS classification infections as well as abnormalities in carbohydrate, fat, and a clinical AIDS condition. In a study of QOL of and protein metabolism (Vosvick et al., 2003). A good women with AIDS, cognitive-behavioral interventions diet is one of the simplest ways to delay HIV progression have been shown to improve cognitive functioning, health and will bolster immune-system function and energy distress, and overall health perceptions, yet there were levels and help patients live longer and more productive no changes in energy/fatigue, pain, or social functioning lives (Hussein, 2003). It is recommended to have 2 or 3 (Lechner et al., 2003). There is some evidence to sup- servings daily from the protein and dairy groups, 7 to port the use of massage therapy to improve QOL for 12 servings from the starch and grain group, 2 servings people living with HIV/AIDS, particularly in combina- of fruits and vegetables rich in vitamin C, as well as tion with other stress-management modalities, and that 3 servings of other fruits and vegetables (Grobler, S­ iegfried, massage therapy may have a positive effect on immu- Visser, Mahlungulu, & Volmink, 2012). nological function (Hiller, Louw, Morris, Uwimana, & Multivitamin supplementation is a good preventive Statham, 2010). A further consideration is the use of measure (Mehta & Fawzi, 2007). Vitamin B, C, E, and recreational drugs such as alcohol, chemical stimulants, folic acid have been shown to delay the progression of tobacco, and marijuana, which increases physical and HIV. Supplementation with selenium, N-acetyl cysteine, emotional stress. In patients with HIV/AIDS, physical probiotics, and prebiotics has considerable potential, but and emotional stress are associated with these agents, the evidence needs to be further substantiated. Vitamin A, as they have an immunosuppressant effect and may iron, and zinc have been associated with adverse effects interfere with health-promoting behaviors. Substance and caution is warranted for their use (Hummelen, use may also have a negative effect on interpersonal Hemsworth, & Reid, 2010). relationships and is associated with a relapse to unsafe Exercise is also important for health promotion in sexual practices (Lambert et al., 2011). Patients who have patients with HIV/AIDS. Obrien, Nixon, Tyan, and substance abuse problems are encouraged to participate Glazier (2010) examined the safety and effectiveness in self-health groups and harm-reduction programs to of aerobic exercise interventions on immunologic and promote their health and QOL. virologic, cardiopulmonary, and psychologic outcomes Research further suggests that the promotion of health and strength, weight, and body composition in adults involves positive emotional coping, such as having a living with HIV. Performing constant or interval aerobic strong will to live, positive attitudes, feeling in charge, a exercise, or a combination of constant aerobic exercise strong sense of self, expressing their needs, and a sense and progressive resistive exercise for at least 20 m ­ inutes of humor. Based on a sample of 103 HIV/AIDS patients at least three times per week for at least 5 weeks, a­ ppears (Cohen, 2001), the relationship between the use of humor to be safe and may lead to significant improvements in to cope with stress (coping humor) and perceived social selected outcomes of cardiopulmonary fitness (maximum support, depression, anxiety, self-esteem, and stress was oxygen consumption), body composition (leg muscle area, examined. Although patients who used more coping percent body fat), and psychological status (­depression– humor were less depressed, expressed higher self-esteem, dejection symptoms). and perceived greater support from friends, humor did Matzo_27129_PTR_19_439-458_05-24-18.indd 449 5/24/18 7:38 PM  450 III. PHYSICAL HEALTH: LIFE-THREATENING DISEASES not buffer stress, anxiety, or immune-system function- PSYCHOSOCIAL ISSUES FOR PATIENTS ing. Other health-promotion strategies frequently used WITH HIV/AIDS AND THEIR FAMILIES by these patients included remaining active, seeking medical information, talking to others, socializing and Many practitioners focus on the patient’s physical func- pursuing pleasurable activities, taking good medical tioning and performance status as the main indicators care, and counseling. It is recognized that stress can also of QOL, rather than on the symptoms of psychologi- be associated with the financial issues experienced by cal distress such as anxiety and depression. Based on a ­patients with HIV/AIDS. Financial planning, identification sample of 203 patients with HIV/AIDS, Farber, Mirsalimi, of financial resources available through the community, ­Williams, and McDaniel (2003) reported that the positive and public assistance offered through Medicaid were meaning of the illness was associated with a higher level important in reducing stress. of psychological well-being and lower depressed mood, In addition, health promotion for patients with and contributed more than problem-focused coping and HIV/AIDS includes avoidance of exposure to organ- social support to predicting both psychological well-being isms in the environment and thereby prevention of the and depressed mood. Sherman et al. (2006), in a 2-year development of opportunistic infections. The immune longitudinal pilot study regarding QOL for patients with system can be supported and maintained through the advanced cancer and AIDS, found that while patients with administration of prophylactic and/or suppressive advanced AIDS (n = 63) reported a total lower QOL as therapies, which decrease the frequency or severity of compared to patients with advanced cancer (n = 38), opportunistic infections (Panel on Opportunistic Infec- AIDS caregivers (n = 43) reported greater overall QOL, tions in HIV-Infected Adults and Adolescents, n.d.). The psychological well-being, and spiritual well-being than administration of a pharmacological agent to prevent did cancer caregivers (n = 38). Sherman et al. posited the initial infection is known as primary prophylaxis, that even as death approaches, health professionals can while the administration of a pharmacological agent identify changes in QOL and appropriate interventions to prevent future occurrences of infection is referred to improve QOL outcomes for HIV/AIDS patients. to as secondary prophylaxis (Panel on Opportunistic Uncertainty is also a source of psychological distress Infections in HIV-Infected Adults and Adolescents, n.d.). for persons living with HIV disease, particularly as it There has been a significant decrease in the incidence relates to ambiguous symptom patterns, exacerbation of opportunistic infections due to the effectiveness of and remissions of symptoms, selection of optimal treat- ART. Prophylaxis for life for HIV-related coinfections ment regimens, the complexity of treatments, and the fear is no longer necessary in many cases. With the restora- of stigma and ostracism. Slater et al. (2013) identified tion of immune-system function, as evidenced by a rise the determinants of QOL in a sample of 60 older gay in CD4 counts, clinicians may consider discontinuation individuals with HIV/AIDS. Age, social support, and of primary prophylaxis under defined conditions (CDC, problem-focused coping were significantly and positively 2013). Ending preventive prophylaxis for opportunistic correlated with QOL, while medical comorbidities, social infections in selected patients may result in a decrease in stigma, and emotion-focused coping were all signifi- drug interactions and toxicities, lower cost of care, and cantly and negatively associated with QOL (p <.01). greater adherence to highly active antiretroviral therapy In stepwise linear regression analysis, emotional/­ (HAART) regimens. However, prophylaxis remains informational support remained as a significant positive important to protect against opportunistic infections in predictor, and medical comorbidities, HIV stigma, and the late symptomatic and advanced stages of HIV disease, emotion-focused coping remained as significant negative when CD4 counts are low. Therefore, throughout the predictors, accounting for 64% of the variance in QOL. illness trajectory, and even in hospice settings, patients The prevalence of major depression disorder (MDD) in may be taking prophylactic medications, requiring patients diagnosed with HIV/AIDS has been estimated sophisticated planning and monitoring. The recom- at 36%, 27% with dysthymic disorder, and 21% with mendation is that prophylaxis and suppressive therapy both MDD and dysthymic disorder and is character- continue in hospice care/PC if the patient is clinically ized by depressed mood, low energy, sleep disturbance, stable and wants to continue prophylaxis drug therapy ­anhedonia, inability to concentrate, loss of libido, weight (Alexander, 2011). However, if side effects occur, and changes, and possible menstrual irregularities (Bing et al., the patient continues to be otherwise stable, alterna- 2001). In patients experiencing depression, clinicians also tive regimens should be considered. Furthermore, if the should assess their use of alcohol, drugs, and opioids. patient is intolerant of prophylaxis and/or the regimens The psychosocial issues experienced by patients with are burdensome, medications should be discontinued. HIV/AIDS include multiple losses, complicated grief, In addition, HIV-infected individuals are at a risk of substance abuse, stigmatization, and homophobia, severe diseases such as hepatitis B, tetanus, influenza, which contribute to patients’ sense of alienation, isola- pneumococcal disease and measles, rubella, and mumps. tion, hopelessness, loneliness, and depression (Sherman, Therefore, it is important to offer such vaccinations as a 2006). Such emotional distress often extends to the component of health promotion and disease prevention. patient’s family caregivers as they attempt to provide Matzo_27129_PTR_19_439-458_05-24-18.indd 450 5/24/18 7:38 PM  19. Palliative Care and HIV/AIDS 451 support and lessen the patient’s suffering, yet experience disorder include worry, trouble falling asleep, impaired suffering themselves. concentration, psychomotor agitation, hypersensitivity, Psychosocial assessment of patients with HIV disease hyperarousal, and fatigue (Arriendel, 2003). The treat- is important throughout the illness trajectory, particularly ment for patients with anxiety is based on the nature as the disease progresses, and there is increased vulner- and severity of the symptoms and the coexistence of ability to psychological distress. Psychosocial assessment other mood disorders or substance abuse. Short-acting includes the following (Sherman, 2006): anxiolytics, such as lorazepam (Ativan) and alprazolam (Xanax), are beneficial for intermittent symptoms, Past social, behavioral, and psychiatric history, which while buspirone (BuSpar) and clonazepam (Klonopin) includes the history of interpersonal relationships, are beneficial for chronic anxiety (Gallego, Barreiro, & education, job stability, career plans, substance use, López-Ibor, 2012). preexisting mental illness, and individual identity Significant stress is also associated with sharing informa- Crisis points related to the course of the disease as tion related to the diagnosis, and particularly when such anxiety, fear, and depression intensify, creating a risk disclosures occur during the stage of advanced disease. The of suicide need for therapeutic communication and support from all Life-cycle phase of individuals and families, which health professionals caring for the patient and his or her influences goals, financial resources, skills, social family exists throughout the illness continuum. For many roles, and the ability to confront personal mortality patients experiencing psychological distress associated Influence of culture and ethnicity, including knowledge with HIV disease, therapeutic interventions such as skill and beliefs associated with health, illness, dying, and building, support groups, individual counseling, and group death, as well as attitudes and values toward sexual interventions using meditation techniques can provide a behaviors, substance use, health promotion and main- sense of psychological growth and a meaningful way of tenance, and healthcare decision making living with the disease (Hanrahan et al., 2011). Fear of Past and present patterns of coping, including disclosure of the AIDS diagnosis and stigmatization in problem-focused and/or emotion-focused coping the community often raise concern in the family about Social support, including sources of support, types of the diagnosis stated on death certificates. Practitioners supports perceived as needed by the patient/family, may therefore write a nonspecific diagnosis on the main and perceived benefits and burdens of support death certificate and sign section B on the reverse side to Financial resources, including healthcare benefits, signify to the registrar general that further information disability allowances, and the eligibility for Medicaid/ will be provided at a later date. Medicare Spiritual Issues in HIV/AIDS Patients diagnosed with depression should be treated with antidepressants to control their symptoms (Repetto & The assessment of patients’ spiritual needs is an important Petitto, 2008). Selective serotonin reuptake inhibitors aspect of holistic care. Nurses must assess patients’ spiri- (SSRIs) are as effective as tricyclic antidepressants but are tual values, needs, and religious perspectives, which are better tolerated because of their more benign side-effect important to understand patients’ perspectives regarding profile. SSRIs may interact with such antiretroviral their illness and their perception and meaning of life. medications as PIs and nNRTIs; therefore, initial SSRI Patients living with and dying from HIV disease have the dosage should be lowered with careful upward titration spiritual needs of meaning, value, hope, purpose, love, and close monitoring for toxic reactions (Repetto & acceptance, reconciliation, ritual, and affirmation of a Petitto, 2008). Serotonin and norepinephrine reuptake relationship with a higher being (Kylmä, Vehviläinen- inhibitors (SNRIs), such as venlafaxine and duloxetine, Julkunen, & Lähdevirta, 2001). Assisting patients to are newer antidepressants that also are useful in treating find meaning and value in their lives, despite adversity, chronic pain. Tricyclic antidepressants are indicated for often involves a recognition of past successes and their treating depression only in patients who do not respond internal strengths. Encouraging open communication to newer medications. It is noted that monoamine oxidase between the patient and his or her family is important inhibitors (MAOIs) may interact with multiple medica- to work toward reconciliation and the completion of tions used to treat HIV disease and, therefore, should unfinished business. be avoided. Medication interaction and liver function As with many life-threatening illnesses, patients with profiles should be considered before antidepressant AIDS may express anger with God. Some may view therapy is initiated. their illness as a punishment or be angry that God is Another psychological symptom experienced by not answering their prayers. Expression of feelings can persons with HIV/AIDS is anxiety. Anxiety may also be a source of spiritual healing. Clergy can also serve as result from the medications used to treat HIV disease, valuable members of the PC team in offering spiritual such as anticonvulsants, sulfonamides, NSAIDs, and support and alleviating spiritual distress. The use of corticosteroids. Manifestations of generalized anxiety meditation, music, imagery, poetry, and drawing may Matzo_27129_PTR_19_439-458_05-24-18.indd 451 5/24/18 7:38 PM  452 III. PHYSICAL HEALTH: LIFE-THREATENING DISEASES offer outlets for spiritual expression and promote a sense can revoke at any time their advance directives. If a of harmony and peace. patient is deemed ­mentally incompetent, state statutes For all patients with chronic life-threatening illness, may allow the court to designate a surrogate decision hope often shifts from hope that a cure will soon be maker as the legal guardian to make decisions for the found to hope for a peaceful death with dignity, includ- patient. ing the alleviation of pain and suffering, determining Up until a few years ago, the majority of patients with one’s own choices, being in the company of family and AIDS usually had not discussed with their physicians significant others, and knowing that their EOL wishes the kind of care they want at the end of life for a variety will be honored. Often, the greatest spiritual comfort of reasons, although more gay men have executed an offered by caregivers or family for patients comes from advance directive than injection-drug users or women active listening and meaningful presence. Simple gestures (Curtis, Patrick, Caldwell, & Collier, 2000). White like sitting and holding the patient’s hands may have a ­patients were more likely to believe that their doctor great impact on the patient’s well-being and them not was an HIV/AIDS expert and good at talking about feeling abandoned. EOL care, recognize they have been very sick in the Spiritual healing may also come from life review, past, and that such discussions are important. By con- as patients are offered an opportunity to reminisce trast, nonwhite patients with AIDS report that they about their lives, reflect on their accomplishments and do not like to talk about the care they would want if misgivings, and forgive themselves and others for their they were very sick and are more likely to feel that if imperfections. Indeed, such spiritual care conveys that they talk about death it will bring death closer (Curtis even in the shadow of death, there can be discovery, et al., 2000). insight, the completion of relationships, the experi- In addition to the discussion of goals of care and the ence of love of self and others, and the transcendence completion of advance directives, healthcare providers of emotional and spiritual pain. Often, patients with can also assist patients and families by discussing the AIDS, by their example, teach nurses, family, and oth- benefits of social support programs, unemployment ers how to transcend suffering and how to die with insurance, worker’s compensation, pension plans, insur- grace and dignity. ance, and union or association benefits. In addition, they may emphasize the importance of organizing informa- Advanced Care Planning tion and documents so that they are easily located and ­accessible, and suggest that financial matters be in order, Advanced planning is another important issue related to such as power of attorney or bank accounts, credit cards, EOL care for patients with HIV/AIDS. First, the health- property, legal claims, and income tax preparation. care provider must assess the patient’s competency to Health professionals may also discuss matters related participate in his or her own plan of care. In assessing to the chosen setting for dying and the patient’s wishes the patient’s competency, the healthcare provider m