Clinical Guide > HIV Treatment > Palliative Care

Palliative Care and HIV

January 2011

Chapter Contents

Background

Palliative care is not curative care, but is supportive, symptom-oriented care. It may be needed at any point in the course of disease progression to relieve patients' suffering and promote quality of life. Palliative care is important for patients with any medical condition, even if they are not actively in hospice. It may be used in conjunction with disease-specific care or as the sole approach to care. Palliative care includes the following:

Management of symptoms (e.g., fatigue, pain)
Treatment of adverse effects (e.g., nausea, vomiting)
Psychosocial support (e.g., depression, advance care planning)
End-of-life care

The U.S. Health Resources and Services Administration (HRSA) HIV/AIDS Bureau Working Group on Palliative Care in HIV has provided the following working definition of palliative care:

Palliative care is patient- and family-centered care. It optimizes quality of life by active anticipation, prevention, and treatment of suffering. It emphasizes use of an interdisciplinary team approach throughout the continuum of illness, placing critical importance on the building of respectful and trusting relationships. Palliative care addresses physical, intellectual, emotional, social, and spiritual needs. It facilitates patient autonomy, access to information, and choice.
(Excerpted from: HRSA Working Group on HIV and Palliative Care Palliative and Supportive Care. HRSA Care ACTION, July 2000)

Palliative care for patients with HIV infection comprises a continuum of treatment consisting of therapy directed at AIDS-related illnesses (e.g., infection or malignancy) and treatments focused on providing comfort and symptom control throughout the lifespan. This care may involve multidimensional and multidisciplinary services, including HIV medicine, nursing, pharmacy, social work, complementary or alternative medicine, and physical therapy.

Palliative Care in the Era of Antiretroviral Therapy

With advances in HIV-specific therapy and care, HIV infection is no longer a rapidly fatal illness. Instead, patients who are able to tolerate antiretroviral therapy (ART) often experience a manageable, chronic illness.

The death rate from AIDS, however, continues to be significant: approximately 14,000 per year in the United States. In many parts of the world, patients still are not able to obtain specific treatments for HIV or for opportunistic illnesses, and supportive or palliative care may be the primary mode of care available to patients with advanced AIDS. Regardless of access to disease-specific treatment, people living with HIV continue to experience symptoms from HIV disease and its comorbid conditions, and those taking ART may experience adverse effects. Integrating palliative care and disease-specific care is important for treating patients with HIV in order to promote quality of life and relieve suffering.

S: Subjective

The patient with advanced HIV disease complains of one or more of the following:

Agitation
Anorexia
Chronic pain
Constipation
Cough
Decubitus ulcers or pressure sores
Delirium
Dementia
Depression
Diarrhea
Dry mouth
Dry skin
Dyspnea
Fatigue
Fever
Hiccups
Increased secretions ("death rattle")
Nausea
Pruritus
Sleep disturbance
Sweats
Vomiting
Weakness
Weight loss

O: Objective

Conduct a complete symptom-directed physical examination.

To evaluate pain, please refer to chapter Pain Syndrome and Peripheral Neuropathy.

A/P: Assessment and Plan

Treatment

Common symptoms of persons with late-stage HIV infection and their possible causes are listed in Table 1. Also included are disease-specific treatments and palliative interventions. Depending on the situation, either or both of these types of treatments may be appropriate. Consider the patient's disease stage and symptom burden, the risks and benefits of therapies, and the patient's wishes.

When assessing each of the patient's symptoms, include the psychiatric review of symptoms (depression, anxiety, psychosis), and consider the following aspects of each symptom:

Onset, progression, frequency, severity
Degree of distress and impact on function
Aggravating and alleviating factors
Previous treatments and their efficacy
What the patient believes is causing the symptom
Coping strategies and supports
The patient's personal goals of care with this particular symptom

Practitioners should note that some of the palliative treatments may have substantial long-term adverse effects and should be used to alleviate symptoms only in late-stage or dying patients.

Table 1. Common Symptoms in Patients with AIDS and Possible Disease-Specific and Palliative Interventions

Symptom	Possible Causes	Disease-Specific or Curative Treatment	Palliative Treatment
Abbreviations: ART = antiretroviral therapy; CNS = central nervous system; GERD = gastroesophageal reflux disease; NMDA = Nmethyl- D-aspartate; NSAID = nonsteroidal antiinflammatory drug; SNRI = serotonin norepinephrine reuptake inhibitor; SSRI = selective serotonin reuptake inhibitor Adapted from Selwyn PA, Rivard M. Palliative care for AIDS: Challenges and opportunities in the era of highly active anti-retroviral therapy. Innovations in End-of-Life Care. 2002;4(3).
CONSTITUTIONAL
Fatigue, weakness	AIDS Opportunistic infection Anemia Hypoandrogenism	ART Treat specific infections Erythropoietin, transfusion Testosterone/androgens in men with concomitant hypogonadism; for women, androgens are investigational and not approved by the U.S. Food and Drug Administration for this use	Psychostimulants: give in the morning; also useful as treatment for depression and sedation owing to opioids; avoid in patients with anxiety and agitation (methylphenidate, dextroamphetamine, modafinil; pemoline is not first-line because of hepatotoxicity risk) Corticosteroids (prednisone, dexamethasone)
Weight loss/anorexia	HIV Malignancy	ART Specific treatment of malignancy Nutritional support	Testosterone/androgens in men with hypogonadism (see above) Oxandrolone for 2-4 weeks courses; an anabolic steroid that may be a useful adjunct, can help increase lean body mass but also has virilizing effects Megestrol acetate can improve appetite and fatigue but has not been shown to improve nutritional status; possible adverse effects include deep vein thrombosis, glucose intolerance, and hypoandrogenism in men Dronabinol is a cannabinol derivative that helps increase appetite but over the long term (≥12 months) does not significantly increase weight Recombinant human growth hormone can improve lean body mass, but is associated with significant side effects (headache, edema, myalgias) and is expensive; consider for patients with severe wasting if no other therapies are effective Corticosteroids can help increase appetite in the short term but not increase weight, and the duration of effect is short-lived
Fevers, sweats	Disseminated Mycobacterium avium complex and other infections HIV lymphoma, and other malignancies	Specific treatment of opportunistic infection or malignancy ART	Acetaminophen NSAIDs (ibuprofen, naproxen, indomethacin) Anticholinergics can be useful for sweats (hyoscyamine, glycopyrrolate) H2-antagonists can be useful for sweats (ranitidine, famotidine; dose at least 12 hours apart from atazanavir; note that cimetidine should be avoided in patients taking fosamprenavir or delavirdine because of drug interactions)
PAIN
Nociceptive, somatic, visceral	Opportunistic infections HIV-related malignancies, nonspecific	Specific treatment of disease entities	See chapter Pain Syndrome and Peripheral Neuropathy for detailed treatment options Refer to the World Health Organization (WHO) analgesic ladder: NSAIDs and opioids Corticosteroids can be useful for treating inflammatory-mediated pain, often as an adjunct to opioids (may worsen some conditions) Benzodiazepines or muscle relaxants for muscle spasms (clonazepam, diazepam, baclofen) Nonpharmacologic therapies (e.g., massage, physical therapy)
Neuropathic	HIV-related peripheral neuropathy Cytomegalovirus Varicella zoster virus Medications (e.g., stavudine, isoniazid, vincristine)	ART Discontinue offending medication Change antiretroviral or other regimen	See chapter Pain Syndrome and Peripheral Neuropathy for detailed treatment options Refer to the WHO analgesic ladder: NSAIDs and opioids Neuropathic pain medications: Tricyclics (nortriptyline, imipramine) Anticonvulsants (gabapentin, pregabalin, lamotrigine) Benzodiazepines can be useful adjuncts (clonazepam, diazepam, baclofen) Corticosteroids can be useful for treating inflammatory-mediated pain, often as an adjunct to opioids (may worsen some conditions) Acupuncture
GASTROINTESTINAL
Nausea, vomiting	Antiretroviral medications Esophageal candidiasis Cytomegalovirus	Specific treatment of disease entities Change antiretroviral regimen	Dopamine antagonists (prochlorperazine, haloperidol) Prokinetic agents (metoclopramide) Antihistamines (diphenhydramine, promethazine, meclizine) Anticholinergics (hyoscyamine, scopolamine) Serotonin antagonists (granisetron, ondansetron, dolasetron) Somatostatin analogues in patients with bowel obstruction, to reduce gut motility; can be used with anticholinergics (octreotide) Benzodiazepines (lorazepam) Marijuana, dronabinol can help increase appetite
Diarrhea	Mycobacterium avium complex Cryptosporidiosis Cytomegalovirus Microsporidiosis Other intestinal infections Malabsorption Medications (e.g., protease inhibitors)	Specific treatment of disease entities Discontinue offending medication	Bismuth, methylcellulose Psyllium Kaolin Diphenoxylate + atropine Loperamide Calcium carbonate Ferrous sulfate Tincture of opium for severe chronic diarrhea unresponsive to other therapies Octreotide for profuse, refractory watery diarrhea; expensive and needs subcutaneous administration
Constipation	Dehydration Malignancy Anticholinergic medications Opioids Reduced activity	Hydration Radiation and chemotherapy Medication adjustment	Activity/diet modification Prophylaxis for patients taking opioids with docusate + senna Peristalsis-stimulating agents: Anthracenes (senna) Polyphenolics (bisacodyl) Softening agents: Surfactant laxatives (docusate) Bulk-forming agents (bran, methylcellulose) Osmotic laxatives (lactulose, sorbitol) Saline laxatives (magnesium hydroxide)
RESPIRATORY
Dyspnea	Pneumocystis jiroveci pneumonia Bacterial pneumonia Anemia Pleural effusion, mass, or obstruction Decreased respiratory muscle function	Specific treatment of disease entities Erythropoietin, transfusion Drainage, radiation, or surgery	Use of fan, open windows Relaxation techniques, massage, guided imagery Oxygen supplement titrated to comfort, if the patient is hypoxic Bronchodilators (albuterol, ipratropium, inhaled steroids) if there is bronchospasm Opioids, particularly morphine, to decrease sense of air hunger and respiratory rate Benzodiazepines (e.g., lorazepam) to reduce the anxiety that often accompanies dyspnea
Cough	Pneumocystis jiroveci pneumonia Bacterial pneumonia Tuberculosis Acid reflux Postnasal drip	Specific treatment of disease entities	Cough suppressants (dextromethorphan, codeine, hydrocodone, morphine, aerosolized lidocaine) Bronchodilators (albuterol, ipratropium, inhaled steroids) if there is bronchospasm H2-blockers or proton-pump inhibitors (ranitidine, omeprazole) if there is acid reflux (caution: possible interactions with atazanavir) Decongestants (pseudoephedrine, phenylephrine, steroid nasal sprays) for postnasal drip
Increased secretions ("death rattle")	Fluid shifts Ineffective cough Sepsis Pneumonia	Antibiotics as indicated	Atropine, hyoscyamine, transdermal scopolamine, glycopyrrolate Fluid restriction, discontinue intravenous fluids
Hiccups	Aerophagia (swallowing air) Candida and other causes of esophagitis including GERD Vagus and phrenic nerve irritation CNS mass lesions Uremia Alcohol intoxication Anesthesia	Treatment of underlying etiology (e.g., antifungals for Candida esophagitis, acid reducers for GERD)	Metoclopramide can promote gastric emptying Chlorpromazine (antipsychotic) can reduce the CNS response, start at low dosage to reduce the risk of dystonia and drowsiness Baclofen can reduce the CNS response
DERMATOLOGIC
Dry skin	Dehydration End-stage renal disease End-stage liver disease Malnutrition medications (e.g., indinavir)	Hydration Dialysis Nutritional support Discontinue offending medication	Avoid soaps, most of which dry the skin further Emollients with or without salicylates Emollients with urea (e.g., Ultra Mide 25) Emollients with lactate (e.g., Lac-Hydrin) Lubricating ointments or creams (e.g., petrolatum, Eucerin)
Pruritus	Fungal infection End-stage renal disease End-stage liver disease Dehydration; dry skin Eosinophilic folliculitis Opioid side effect	Antifungal agents (e.g., itraconazole for eosinophilic folliculitis) Dialysis Hydration Topical corticosteroids	Avoid soaps and hot baths/showers Warm compresses Treatments for dry skin, as above Topical agents (menthol, phenol [e.g., Sarna lotion], calamine, doxepin, capsaicin) Antihistamines (hydroxyzine, doxepin, diphenhydramine) Corticosteroids (topical or systemic) Opioid antagonists (naloxone, naltrexone) can be useful for treating uremic and biliary-associated pruritus Antidepressants Anxiolytics Thalidomide in intractable pruritus, but beware of side effects, including neuropathy
Decubitus ulcers, Pressure sores	Poor nutrition Decreased mobility, prolonged bed rest	Increase mobility Enhance nutrition	Prevention (nutrition, mobility, skin integrity Wound protection (semipermeable film, hydrocolloid dressing) Debridement (normal saline, enzymatic agents, alginates)
NEUROPSYCHIATRIC
Delirium/agitation	Electrolyte imbalances, glucose abnormalities Dehydration Hypoxia Toxoplasmosis Cryptococcal meningitis CNS masses and metastases Sepsis Medication adverse effects (e.g., benzodiazepines, opioids, efavirenz, corticosteroids) Intoxication or withdrawal	Correct imbalances Hydration Oxygen supplementation Specific treatment of disease entities Discontinue offending medications	Neuroleptics (haloperidol, risperidone, chlorpromazine) to induce sedation in severe agitation Benzodiazepines (e.g., lorazepam, diazepam, midazolam) in the "terminal restlessness" of the last few days of life to relieve myoclonus, seizures, restlessness (Note: in some patients, these may have adverse effects)
Dementia	HIV-associated dementia Other dementia (e.g., Alzheimer dementia, Parkinson dementia, multi-infarct dementia)	ART	Psychostimulants (methylphenidate) Memantine (NMDA antagonist) has been used in patients with Alzheimer dementia but has unclear benefit for patients with HIV-associated dementia Low-dose neuroleptics (haloperidol, chlorpromazine) can be useful in psychotic delirium
Depression	Chronic illness Reactive depression, major depression	Antidepressants	Antidepressants are useful when the patient has a life expectancy of several months or more: SSRIs, SNRIs, mirtazapine (useful in lowest dosages for insomnia), bupropion, (though beware of lowering the seizure threshold); note that tricyclic antidepressants are not considered first- or second-line therapy owing to side effects though they may be useful for treating refractory melancholic or delusional depression (see chapter Depression for further information, including dosages) Psychostimulants are useful for patients who have urgent, severe depression or are weeks from death (methylphenidate, pemoline, dextroamphetamine, modafinil)

Advance Care Planning

Advance care planning involves planning for future medical care. Two main documents are produced:

Advance directive (living will)
Health care proxy (a person to speak for the patient or make decisions if the patient is too sick to do so)

The clinician should initiate these conversations and make referrals to helpful resources.

Patient Education

Discuss advance care planning with patients, and the option of hospice care, if appropriate.
Provide patients and their family members with detailed information so that they understand the illness and associated treatments.
Instruct patients to discuss their pain or other bothersome symptoms with their health care providers.
Encourage patients to talk with their health care providers if they are feeling anxious, depressed, or fearful.
Discuss with patients what their death might be like. Some patients may feel relieved to be able to talk openly about their last days. Assure them that their pain will be controlled and that their health care providers will be there to help them.

References

American Academy of HIV Medicine. Palliative Care. In: The HIV Medicine Self-Directed Study Guide (2003 ed.). Los Angeles: American Academy of HIV Medicine; 2003.
American Academy of HIV Medicine. Palliative Care and End-of-Life Support. In: AAHIVM Fundamentals of HIV Medicine (2007 ed.). Washington: American Academy of HIV Medicine; 2007.
National Hospice Organization. Guidelines for Determining Prognosis for Selected Non-Cancer Diagnoses. Alexandria, VA: National Hospice Organization; 1996.
O'Neill JF, McKinney M. Care for the Caregiver. In: O'Neill JF, Selwyn PA, Schietinger H, eds. The Clinical Guide to Supportive and Palliative Care for HIV/AIDS. Rockville, MD: Health Resources and Services Administration; 2003.
Selwyn PA, Rivard M. Palliative care for AIDS: challenges and opportunities in the era of highly active anti-retroviral therapy. J Palliat Med. 2003 Jun;6(3):475-87.
University of Washington Center for Palliative Care Education. Module 1: Overview of HIV/AIDS Palliative Care.
U.S. Health Resources and Services Administration. A Guide to Primary Care of People with HIV/AIDS, 2004 Edition. Rockville, MD: Health Resources and Services Administration; 2004;123-131.
Weinreb NJ, Kinzbrunner BM, Clark M. Pain Management. In: Kinzbrunner BM, Weinreb NJ, Policzer JS, eds. 20 Common Problems: End-of-life Care. New York: McGraw Hill Medical Publishing Division; 2002;91-145.
World Health Organization. Cancer Pain Relief and Palliative Care, Report of a WHO Expert Committee. Geneva: World Health Organization; 1990.