Clinical Manual for Management of the HIV-Infected Adult
2006 Edition

Section 7: Pain and Palliative Care

Palliative Care and HIV

Background

Palliative care is not curative care, but is supportive, symptom-oriented care. It is usually needed throughout the course of disease progression to relieve patients' suffering and promote quality of life. Palliative care is important for patients with any medical condition. 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 (eg, fatigue, pain)
• Treatment of adverse effects (eg, nausea, vomiting)
• Psychosocial support (eg, depression, advance care planning)
• End-of-life care

Following is the widely used definition of palliative care according to the World Health Organization:

Palliative medicine is the study and management of patients with active, progressive, far advanced disease for whom the prognosis is limited and the focus of care is the quality of life. [It is] the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families.

Palliative care in AIDS patients comprises a continuum of treatment consisting of therapy directed at AIDS-related illnesses (eg, infection or malignancy) and treatments focused on providing comfort and symptom control throughout the life span. This care may involve multidimensional and multidisciplinary services, including HIV medicine, nursing, pharmacy, social work, complementary/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, those 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 15,000-16,000 per year in the United States. In many parts of the world, patients 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 with disease-specific care is important in the treatment of patients with HIV to promote quality of life and to relieve suffering.

S: Subjective

The patient with advanced HIV disease complains of 1 or more of the following:

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

O: Objective

Conduct a complete symptom-directed physical examination.

A: Assessment and Plan

Treatment

Table 1 lists common symptoms of AIDS and their possible causes. Also included are disease-specific treatments and palliative interventions. Depending on the situation, either or both of these treatments may be appropriate. Consider the patient's disease stage and symptom burden, the risks and benefits of therapies, and the patient's wishes. 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* CONSTITUTIONAL Fatigue, weakness AIDS OIs Anemia ART Treat specific infections Erythropoietin, transfusion Psychostimulants (methylphenidate, pemoline, dextroamphetamine, modafinil) Testosterone/androgens Corticosteroids (prednisone, dexamethasone) Weight loss/anorexia HIV Malignancy ART Chemotherapy Nutritional support/enteral feedings Testosterone/androgens Oxandrolone Megestrol acetate Dronabinol Recombinant growth hormone Corticosteroids Fevers, sweats Disseminated MAC and other infections HIV lymphoma, and other malignancies Specific treatment of OIs or malignancy ART NSAIDs (ibuprofen, naproxen, indomethacin) Anticholinergics (hyoscine, thioridazine) H2-antagonists (cimetidine) PAIN Nociceptive, somatic, visceral Opportunistic infections HIV-related malignancies, nonspecific Specific treatment of disease entities NSAIDs Opioids Corticosteroids Neuropathic HIV-related peripheral neuropathy CMV VZV Medications (eg, dideoxynucleosides: didanosine, zalcitabine, stavudine), isoniazid, vincristine ART Discontinue offending medication; Change antiretroviral or other regimen NSAIDs Neuropathic pain medications: tricyclics (amitriptyline, imipramine) benzodiazepines (clonazepam) anticonvulsants (gabapentin, lamotrigine) Opioids (eg, methadone) and adjuvants Corticosteroids Acupuncture GASTROINTESTINAL Nausea, vomiting Antiretroviral medications Esophageal candidiasis CMV Specific treatment of disease entities Change antiretroviral regimen Dopamine antagonists (prochlorperazine, haloperidol) Prokinetic agents (metoclopramide) Antihistamines (diphenhydramine, promethazine) Anticholinergics (hyoscine, scopolamine) Serotonin antagonists (granisetron, ondansetron, dolasetron) H2 blockers (cimetidine) Proton pump inhibitors (omeprazole) Somatostatin analogues (octreotide) Benzodiazepines (lorazepam) Marijuana, dronabinol Diarrhea MAC Cryptosporidiosis CMV microsporidiosis Other intestinal infections Malabsorption Medications (eg, protease inhibitors) Specific treatment of disease entities Discontinue offending medication Bismuth, methylcellulose Psyllium Kaolin Diphenoxylate + atropine Loperamide Calcium carbonate Ferrous sulfate Octreotide Tincture of opium Constipation Dehydration Malignancy Anticholinergic medications Opioids Hydration Radiation and chemotherapy Medication adjustment Activity/diet Prophylaxis for patients taking opioids 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 PCP 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, oxygen Opioids Bronchodilators Methylxanthines Benzodiazepines (eg, lorazepam) Cough PCP, bacterial pneumonia TB Acid reflux Postnasal drip Specific treatment of disease entities Cough suppressants (dextromethorphan, codeine, other opioids) Decongestants, expectorants (various) Increased secretions ("death rattle") Fluid shifts Ineffective cough Sepsis Pneumonia Antibiotics as indicated Atropine, hyoscine, transdermal scopolamine, glycopyrrolate Fluid restriction, discontinue intravenous fluids DERMATOLOGIC Dry skin Dehydration End-stage renal disease End-stage liver disease Malnutrition medications (eg, indinavir) Hydration Dialysis Nutritional support Discontinue offending medication Emollients with or without salicylates Lubricating ointments or creams (eg, petrolatum, Eucerin) Pruritus Fungal infection End-stage renal disease End-stage liver disease Dehydration Eosinophilic folliculitis Antifungal agents (itraconazole for eosinophilic folliculitis) Dialysis Hydration Topical corticosteroids Topical agents (menthol, phenol, calamine, doxepin, capsaicin) Antihistamines (doxepin - oral, diphenhydramine) Corticosteroids (topical or systemic) Serotonin antagonists (ondansetron) Opioid antagonists (naloxone, naltrexone) Antidepressants Anxiolytics Neuroleptics Thalidomide 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 Toxoplasmosis Cryptococcal meningitis Sepsis Medication adverse effects (eg, benzodiazepines, opioids, efavirenz) Intoxication Correct imbalances Hydration Specific treatment of disease entities Discontinue offending medications Neuroleptics (haloperidol, risperidone, chlorpromazine) Benzodiazepines (eg, lorazepam, midazolam) (Note: in some patients, these may have adverse effects.) Dementia AIDS-related dementia Other dementia ART Psychostimulants (methylphenidate) Low-dose neuroleptics (haloperidol) Depression Chronic illness Reactive depression, major depression Antidepressants (SSRIs, tricyclics, other) Psychostimulants (methylphenidate, pemoline, dextroamphetamine, modafinil) Corticosteroids (prednisone, dexamethasone)

Key to abbreviations: OIs = opportunistic infections; ART = antiretroviral therapy; MAC = Mycobacterium avium complex; NSAIDs = nonsteroidal antiinflammatory drugs; CMV = cytomegalovirus; VZV = varicella zoster virus; PCP = Pneumocystis jiroveci pneumonia; TB = tuberculosis; SSRI = selective serotonin reuptake inhibitor.

* 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.

Adapted with permission 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), Available at www.edc.org/lastacts.

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 the patient and his or her family 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. The HIV Medicine Self-Directed Study Guide (2003 ed.). Los Angeles: AAHIVM; 2003.
• National Hospice Organization. Guidelines for Determining Prognosis for Selected Non-Cancer Diagnoses. Alexandria, VA: National Hospice Organization; 1996.
• O'Neill JF, McKinney M. Caring 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. Available online at hab.hrsa.gov/tools/palliative/. Accessed May 20, 2006.
• 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). Available online at www.edc.org/lastacts.
• 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. Accessed February 7, 2006.
• U.S. Health Resources and Services Administration. A Guide to Primary Care of People with HIV/AIDS, 2004 ed. Rockville, MD: Health Resources and Services Administration; 2004:123-131. Available online at hab.hrsa.gov/tools/primarycareguide/. Accessed May 20, 2006.
• 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.