Thirty years of experience with HIV/AIDS has resulted in a new chronic illness for more than 1 million Americans living with ongoing toxicities and a lifespan possibly shortened by premature aging. Disease from the human immunodeficiency virus-1 (HIV-1) remains incurable, yet mortality has decreased dramatically and is related to long-term toxicities of therapy or comorbidity such as malignancy or hepatitis C. Previously, a long, unpredictable prodrome preceded death; now death occurs in intensive care units with complications of coexisting diagnoses. Complex antiretroviral therapy is the purview of specialists, but recognition of early illness remains a challenge to all providers; up to 40% of patients with HIV disease are only diagnosed with advanced disease.
HIV/AIDS in the United States remains surrounded by stigma affecting people of color and those in marginalized living situations. Men who have sex with men (MSM remain) at extremely high risk because many young people have not sufficiently learned about or adjusted behaviors to the risk. Twenty-five percent of those carrying HIV-1 are unaware of their own ability to spread disease, and heterosexual contact remains the primary risk factor for women. Although “high-risk” groups exist, such as sex workers and intravenous drug users, any sexually active person is still at risk, and the Centers for Disease Control and Prevention (CDC) implemented an “opt out” testing policy in 2006 to identify those who might be helped by treatment. Integrating palliative approaches can improve quality of life, enhance adherence to combination antiretroviral therapy and other therapies, and address complicated psychosocial issues facing HIV-infected individuals and their families.
Epidemiology
Understanding the epidemiology of HIV disease in the United States is fundamental to being able to plan for the future. Based upon 2007 data from 35 U.S. states and 5 territories, the CDC has calculated that more than 1 million persons are living in the United States with HIV disease (including more than 455,000 with actual AIDS), and more than 56,000 new cases are diagnosed yearly. Although the worldwide epidemic is predominantly female, disease in the United States remains focused (53%–64%, depending on the data set) among MSM. Mortality rates have dropped dramatically, but between 14,000 and 22,000 people continue to die of AIDS annually. The affected population is up to 51% African American, 32% Caucasian, and 17% Hispanic, with prevalence quite high in those living in Pacific Islands. Seventy-two percent of women infected in the United States are heterosexual contacts of either men who have sex with men or intravenous drug users. Death rates are highest for older patients and intravenous drug users.
The epicenter for AIDS in the United States is now in the south (40%), with 29% in the northeast and 20% on the west coast. Ninety percent of those with identified HIV disease are younger than 50, meaning that there will be another peak in deaths from HIV over the next 30 years. If started on optimal therapy at the time of diagnosis, most will live long enough to develop comorbidities such as cancer or end-stage liver disease from hepatitis C or will die of cardiovascular complications and other manifestations of early aging. The current population is likely to develop higher rates of cirrhosis or other end-stage liver disease, prostate and other genitourinary cancers, severe mental illness and neurocognitive disorders, and problems related to osteoporosis.
Someone becomes infected with HIV-1 every 9.5 minutes in the United States, and 36% of those diagnosed may progress to AIDS within 12 months of diagnosis because of delayed diagnosis and complications of opportunistic infections. Thus, providers caring for persons with HIV/AIDS near the end of life are obligated to discuss issues of detection and prevention with loved ones who may have had parenteral or sexual contact with the person. Implications for providers are that HIV remains an infectious illness targeting people who may be marginalized in society and those who are unsuspecting of their diagnosis. Bereavement will continue to be complicated by stigma, recognition of sexual infidelity, and new infectious illness in remaining partners. AIDS may no longer be the primary cause of death, but it continues to pose a subtle threat in populations not yet aware of the diagnosis.
Over the next 10 years, there may be four populations suffering from HIV disease: (1) young people demonstrating usual psychological resistance to managing their chronic illness (similar to diabetes); (2) survivors who are older and “treatment experienced,” having lived through a time when many were dying of AIDS; (3) those who have disorganized lives and difficulty remaining in care; and (4) women who have become infected either through intravenous drug use or sexual contact. Each of these will make diverse demands on the health care system. Providers will want to assemble unique approaches to providing support. Those needs near the end of life may differ based on individual ability to participate in care planning.
Palliative Approach across the Continuum
Palliative care, once a critical component of HIV care, is often ignored by providers who believe that once people have access to combination antiretroviral therapy (cART), end-of-life decisions cease to be relevant. However, palliative care remains important in HIV care as in other chronic, life-limiting illnesses. Concurrent palliative care with optimal general treatment throughout the trajectory of illness is clearly needed for all persons with HIV/AIDS. Symptom recognition and control are paramount, regardless of disease stage. In the United States, people living with HIV historically may have taken sequential single-drug therapy, and although survival may be prolonged, they are plagued by long-term toxicities as well as fear of developing resistance to available therapies. Establishing goals of care is part of good palliative care at all stages of the illness. Having these discussions with patients and their chosen families is also helpful in identifying health care proxies who can assist with decision making at critical junctures involving decisional incapacity. Addressing mental health issues that may also interfere with adherence to cART continues to be critical to successful therapy. Improving skills for communicating serious information (such as negative changes related to management) as well as those for conducting family meetings are essential elements of palliative care that can be woven into ongoing management. Ethical issues faced by patients and families in decision making and spiritual and cultural beliefs are challenges highlighted by the demographics of the U.S. epidemic that can be addressed with palliative skills. More study is needed to evaluate the effectiveness of this type of care across the continuum.
Persons living with advanced disease have improved control of physical symptoms, anxiety, insight, and spiritual well-being when care is provided by home palliative care or inpatient hospice workers. In 1999, Singer and colleagues identified preferred domains of end-of-life care for persons with HIV that are likely to continue to apply ( Box 26-1 ). Families need preparation for impending death of a loved one plus support throughout their mourning and bereavement. HIV providers must recognize that staff are affected deeply when patients do die, because many are young themselves and have not witnessed many deaths from this illness. They are left perplexed and feeling as if there were something more that could have been done (see Box 26-1 ).
- •
Adequate pain and symptom management
- •
Avoiding inappropriate prolongation of dying
- •
Achieving a sense of control
- •
Relieving burden
- •
Strengthening relationships with loved ones
Unique Family Unit
Given current U.S. epidemiology, providers must clarify with each patient whom he or she considers to be in a significant relationship and who might act on behalf of the patient for making health-related decisions. This must be recorded in the patient record. Stigma continues to play a significant role in how families respond to HIV/AIDS, and providers should be aware that homosexuality may be less acceptable to a family of color than admitting to substance abuse. When substance use is an underlying risk factor, myriad problems ranging from antisocial behavior to complete breakdown of family-of-origin relationships may develop. Mental illness, a common comorbidity, can make identification of a health care proxy challenging. In all families, but perhaps particularly in those with ongoing adjustment, a history of ongoing review of goals of care makes open and honest conversations about end-of-life preferences easier.
Teamwork
HIV/AIDS is a complex illness involving multiple body systems and is complicated by psychological and social issues. Patients have a need for personal and family education, support groups, telephone follow-up, and individual counseling sessions with nurses, counselors, or chaplains. Significant numbers suffer from anxiety or depression and risks for neurologic symptoms remain high if not treated. Stigma remains a problem and may worsen in the future given current demographics. For these reasons, it is simply not realistic for one provider to manage this illness without involving other members of an interdisciplinary team, regardless of stage of disease. Team members can provide invaluable assistance and insight.
Advance Care Planning
Discussing serious illness or the end of life is difficult for both clinicians and families. Culturally, many believe that such a discussion itself can hasten death. Having these conversations before being confronted with actual need for decision making removes emotional impact and can ensure that patients receive the best care and support when capacity is diminished or lost. The attitude of the provider plays a role in the patient’s ability to discuss these topics. Palliative care teachings described in Chapter 20 provide alternatives to thinking, There is nothing else we can do.
Because it is not possible to anticipate every situation one might face near the end of life, patients and families must be encouraged to consider who would take legal responsibility for decision making if the patient were unable to speak for himself or herself. Studies have documented great mistrust among racial and ethnic minorities and medical providers. For this reason, it may be useful to offer group education about end-of-life decision making in large HIV clinics or to have social workers or other clinical counselors available to facilitate this education before actual discussions with the provider. Whatever the mechanism, patients and families fare better during serious illness if these issues are addressed and resolved ahead of time.
Identifying and documenting in the medical record the name and contact information for a health care proxy is essential. If the chosen surrogate is not related by blood or marriage, a well-documented legal designation is the only effective method of ensuring that this person will be respected as decision maker. These issues require time to consider and may need repeated dialogue. Initiating annual discussions regarding “emergency-related” decision making may be a useful technique in practice.
Prognosis-Adjusted Management Issues
Successful management of HIV disease requires an understanding of where the patient is along the continuum of illness. This can be accomplished in consultation with an HIV specialist. It may be useful to think of the illness in five stages based on treatment status:
- 1
Treatment naïve
- 2
Initiation and stabilization of cART
- 3
Stable health maintenance, probably including symptom management
- 4
New onset of symptoms signifying treatment failure or other disease
- 5
Lack of viral control or active dying
Care needs vary based on clinical stage of disease. Asking about available support system, previous attempts at advance care planning, and psychosocial/spiritual beliefs may be helpful in adjusting or creating new goals of care ( Table 26-1 ).
| Stage of Illness | Treatment Status | Management Strategy | Specialist Need |
|---|---|---|---|
| 1. Treatment naïve | 1. Engagement in care with clarification of support system & mental health issues | Clinical stabilization & staging | ++++ |
| 2. Initiation of cART and viral control | 2. Treatment initiation and stabilization, including intensive adherence support | Initiation of cART New symptoms: rule out immune reconstitution syndrome (IRIS) | ++++ |
| 3. Health maintenance | 3. Health maintenance: stable on therapy for >1year | Local management for intercurrent illness with referral back to HIV specialist | ++ (phone) Local evaluation |
| 4. Loss of viral Control |
| Clinical stabilization Diagnostic workup Management of cART per HIV specialist | ++ (phone) Local evaluation |
| 5. Inability to control HIV or comorbidity | 5. Decline, with death expected | Referral for palliative care and/or hospice services; involve HIV specialist | + Local care; courtesy contact |
Predicting prognosis is the foundation of good end-of-life care and must be based on history of cART, current markers such as CD4 cell count and viral load, and patient goals of care. In the past, many with HIV/AIDS experienced a gradual deterioration that alerted clinicians to their poor prognosis. Now, with improved medical management, comorbidities or complications of intravenous substance use are often the cause of death. Toxicities such as lactic acidosis can result in very rapid deterioration and death. Box 26-2 lists indicators of a poor prognosis documented in the literature.
Laboratory Data
Persistent CD4+ cell count < 25 cells/mm 3
Persistent HIV RNA > 100,000 copies/mL
Serum albumin < 2.5 g/dL
Lactate level > 10 mmol/L and pH < 7.0
Central nervous system disease (e.g., lymphoma, unresponsive toxoplasmosis, progressive multifocal leukoencephalopathy)
HIV dementia (associated with early death)
Unresponsive lymphoma, visceral Kaposi sarcoma, other progressive malignant disease
Persistent cryptosporidiosis-related diarrhea (>1 month)
Advanced end-organ failure (e.g., liver failure secondary to hepatitis C; cardiomyopathy)
Disseminated and resistant atypical Mycobacterium avium complex (MAC) or coccidiomycosis
Resistant wasting (>10% body weight loss)
The Medicare/Medicaid Hospice Benefits provide home-based care when life expectancy is less than 6 months if the disease runs its normal course. Although this is not a realistic guideline for patients with HIV disease, providers should be aware that these services are available in caring for patients who are deteriorating. One simple way to decide about use of this benefit is to ask yourself, Would I be surprised if this person died in the next month? If the answer is no, then it is time to begin discussions with patient and family regarding support needs at home. Social work or palliative care consultation can be helpful.
Impact of Symptoms
Optimal HIV care includes focus on management of side effects and long-term toxicities that negatively impact daily quality of life. Although a symptom may be expressed physically, it can also reflect, or be modified by, emotional, social, and spiritual issues. For example, pain can be complicated by its meaning to the patient who may have a fear of being punished for his lifestyle, or it may bring back memories of a friend who died with unrelieved pain. It can reflect anguish regarding lack of appropriate guardianship for a child or any number of unspoken worries. Without recognizing these modifiers, the symptom in question can be relieved acutely but may recur or seem “out of proportion” to the identified stimulus.
Studies conducted by the AIDS Clinical Trials Group (ACTG) have identified multiple symptoms that plague patients taking cART. Symptom prevalence documented throughout the epidemic demonstrates that the same symptoms worsen quality of life regardless of stage of illness ( Table 26-2 ). An individual patient may have as many as 16 active signs or symptoms at any given time. The ACTG symptom index should be used clinically to document problems facing patients daily, providing an objective picture of each patient, because it has been well documented that providers at all levels fail to recognize either the number or severity of problems experienced by patients. The HIV Cost and Service Utilization Study (HCSUS) showed that number of symptoms may have greater impact on health-related quality of life than CD4+ cell count or measured viral burden. Symptoms such as fatigue are difficult for patients to describe or quantify and require increased efforts by providers to incorporate other team members who might document how these problems impact daily quality of life for patients.
| Sign/Symptom | Fontaine et al (France) ( N = 290) (%) | Vogl et al (U.S.) ( N = 504) (%) | Matthews et al (U.S.) ( N = 3,072) (%) | Fantoni et al (Italy) ( N = 1,128) (%) | Karus et al (U.S.) ( N = 255) (%) |
|---|---|---|---|---|---|
| Fatigue | 77 | 85 | 68 | 55 | 72 |
| Fevers | 59 | — | 51.1 | 29 | 14 |
| Hand/foot pain | — | — | 48.9 | — | 38 |
| Nausea | 48 | — | 49.8 | 22 | 48 |
| Diarrhea | 45 | — | 51 | 11 | 39 |
| Sadness/ Depression | 63 | 82 | — | — | 47 |
| Sleep problems | 62 | 73.8 | — | — | 48 |
| Skin problems | 37 | — | 24.3 | 17 | 36 |
| Cough | 57 | 60.3 | 30.4 | 32 | 48 |
| Appetite loss (anorexia) | 55 | — | 49.8 | 34 | 40 |
| Weight loss | 60 | — | 37.1 | — | 46 |
| Pain | — | 76 | 29 | 40 | 69 |
| Dyspnea | 41 | 62.4 | 30.4 | 19 | 52 |
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