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Pain and Palliative Care

Palliative Care and HIV

Contents
Background
SOAP (Subjective, Objective, Assessment, Plan)
Patient Education
References
Table 1. Common Symptoms in Patients with AIDS and Possible Disease-Specific and Palliative Interventions

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:

bulletManagement of symptoms (eg, fatigue, pain)
bulletTreatment of adverse effects (eg, nausea, vomiting)
bulletPsychosocial support (eg, depression, advance care planning)
bulletEnd-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.

SOAP (Subjective, Objective, Assessment, Plan)

Subjective

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

bulletAgitation
bulletAnorexia
bulletChronic pain
bulletConstipation
bulletCough
bulletDecubitus ulcers or pressure sores
bulletDelirium
bulletDementia
bulletDepression
bulletDiarrhea
bulletDry skin
bulletDyspnea
bulletFatigue
bulletFever
bulletIncreased secretions ("death rattle")
bulletNausea
bulletPruritus
bulletSweats
bulletVomiting
bulletWeakness
bulletWeight loss

Objective

Conduct a complete symptom-directed physical examination.

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
SymptomPossible CausesDisease-Specific or Curative TreatmentPalliative Treatment*

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.

CONSTITUTIONAL
Fatigue, weakness
bulletAIDS
bulletOIs
bulletAnemia
bulletART
bulletTreat specific infections
bulletErythropoietin, transfusion
bulletPsychostimulants (methylphenidate, pemoline, dextroamphetamine, modafinil)
bulletTestosterone/androgens
bulletCorticosteroids (prednisone, dexamethasone)
Weight loss/anorexia
bulletHIV
bulletMalignancy
bulletART
bulletChemotherapy
bulletNutritional support/enteral feedings
bulletTestosterone/androgens
bulletOxandrolone
bulletMegestrol acetate
bulletDronabinol
bulletRecombinant growth hormone
bulletCorticosteroids
Fevers, sweats
bulletDisseminated MAC and other infections
bulletHIV lymphoma, and other malignancies
bulletSpecific treatment of OIs or malignancy
bulletART
bulletNSAIDs (ibuprofen, naproxen, indomethacin)
bulletAnticholinergics (hyoscine, thioridazine)
bulletH2-antagonists (cimetidine)
PAIN
Nociceptive, somatic, visceral
bulletOpportunistic infections
bulletHIV-related malignancies, nonspecific
bulletSpecific treatment of disease entities
bulletNSAIDs
bulletOpioids
bulletCorticosteroids
Neuropathic
bulletHIV-related peripheral neuropathy
bulletCMV
bulletVZV
bulletMedications (eg, dideoxynucleosides: didanosine, zalcitabine, stavudine), isoniazid, vincristine
bulletART
bulletDiscontinue offending medication;
bulletChange antiretroviral or other regimen
bulletNSAIDs
bulletNeuropathic pain medications:
bullettricyclics (amitriptyline, imipramine)
bulletbenzodiazepines (clonazepam)
bulletanticonvulsants (gabapentin, lamotrigine)
bulletOpioids (eg, methadone) and adjuvants
bulletCorticosteroids
bulletAcupuncture
GASTROINTESTINAL
Nausea, vomiting
bulletAntiretroviral medications
bulletEsophageal candidiasis
bulletCMV
bulletSpecific treatment of disease entities
bulletChange antiretroviral regimen
bulletDopamine antagonists (prochlorperazine, haloperidol)
bulletProkinetic agents (metoclopramide)
bulletAntihistamines (diphenhydramine, promethazine)
bulletAnticholinergics (hyoscine, scopolamine)
bulletSerotonin antagonists (granisetron, ondansetron, dolasetron)
bulletH2 blockers (cimetidine)
bulletProton pump inhibitors (omeprazole)
bulletSomatostatin analogues (octreotide)
bulletBenzodiazepines (lorazepam)
bulletMarijuana, dronabinol
Diarrhea
bulletMAC
bulletCryptosporidiosis
bulletCMV microsporidiosis
bulletOther intestinal infections
bulletMalabsorption
bulletMedications (eg, protease inhibitors)
bulletSpecific treatment of disease entities
bulletDiscontinue offending medication
bulletBismuth, methylcellulose
bulletPsyllium
bulletKaolin
bulletDiphenoxylate + atropine
bulletLoperamide
bulletCalcium carbonate
bulletFerrous sulfate
bulletOctreotide
bulletTincture of opium
Constipation
bulletDehydration
bulletMalignancy
bulletAnticholinergic medications
bulletOpioids
bulletHydration
bulletRadiation and chemotherapy
bulletMedication adjustment
bulletActivity/diet
bulletProphylaxis for patients taking opioids
bulletPeristalsis-stimulating agents:
bulletanthracenes (senna)
bulletpolyphenolics (bisacodyl)
bulletSoftening agents:
-surfactant laxatives (docusate)
-bulk-forming agents (bran, methylcellulose)
-osmotic laxatives (lactulose, sorbitol)
-saline laxatives (magnesium hydroxide)
RESPIRATORY
Dyspnea
bulletPCP
bulletBacterial pneumonia
bulletAnemia
bulletPleural effusion, mass, or obstruction
bulletDecreased respiratory muscle function
bulletSpecific treatment of disease entities
bulletErythropoietin, transfusion
bulletDrainage, radiation, or surgery
bulletUse of fan, open windows, oxygen
bulletOpioids
bulletBronchodilators
bulletMethylxanthines
bulletBenzodiazepines (eg, lorazepam)
Cough
bulletPCP, bacterial pneumonia
bulletTB
bulletAcid reflux
bulletPostnasal drip
bulletSpecific treatment of disease entities
bulletCough suppressants (dextromethorphan, codeine, other opioids)
bulletDecongestants, expectorants (various)
Increased secretions ("death rattle")
bulletFluid shifts
bulletIneffective cough
bulletSepsis
bulletPneumonia
bulletAntibiotics as indicated
bulletAtropine, hyoscine, transdermal scopolamine, glycopyrrolate
bulletFluid restriction, discontinue intravenous fluids
DERMATOLOGIC
Dry skin
bulletDehydration
bulletEnd-stage renal disease
bulletEnd-stage liver disease
bulletMalnutrition medications (eg, indinavir)
bulletHydration
bulletDialysis
bulletNutritional support
bulletDiscontinue offending medication
bulletEmollients with or without salicylates
bulletLubricating ointments or creams (eg, petrolatum, Eucerin)
Pruritus
bulletFungal infection
bulletEnd-stage renal disease
bulletEnd-stage liver disease
bulletDehydration
bulletEosinophilic folliculitis
bulletAntifungal agents (itraconazole for eosinophilic folliculitis)
bulletDialysis
bulletHydration
bulletTopical corticosteroids
bulletTopical agents (menthol, phenol, calamine, doxepin, capsaicin)
bulletAntihistamines (doxepin - oral, diphenhydramine)
bulletCorticosteroids (topical or systemic)
bulletSerotonin antagonists (ondansetron)
bulletOpioid antagonists (naloxone, naltrexone)
bulletAntidepressants
bulletAnxiolytics
bulletNeuroleptics
bulletThalidomide
Decubitus ulcers, Pressure sores
bulletPoor nutrition
bulletDecreased mobility, prolonged bed rest
bulletIncrease mobility
bulletEnhance nutrition
bulletPrevention (nutrition, mobility, skin integrity)
bulletWound protection (semipermeable film, hydrocolloid dressing)
bulletDebridement (normal saline, enzymatic agents, alginates)
NEUROPSYCHIATRIC
Delirium/agitation
bulletElectrolyte imbalances, glucose abnormalities
bulletDehydration
bulletToxoplasmosis
bulletCryptococcal meningitis
bulletSepsis
bulletMedication adverse effects (eg, benzodiazepines, opioids, efavirenz)
bulletIntoxication
bulletCorrect imbalances
bulletHydration
bulletSpecific treatment of disease entities
bulletDiscontinue offending medications
bulletNeuroleptics (haloperidol, risperidone, chlorpromazine)
bulletBenzodiazepines (eg, lorazepam, midazolam) (Note: in some patients, these may have adverse effects.)
Dementia
bulletAIDS-related dementia
bulletOther dementia
bulletART
bulletPsychostimulants (methylphenidate)
bulletLow-dose neuroleptics (haloperidol)
Depression
bulletChronic illness
bulletReactive depression, major depression
bulletAntidepressants (SSRIs, tricyclics, other)
bulletPsychostimulants (methylphenidate, pemoline, dextroamphetamine, modafinil)
bulletCorticosteroids (prednisone, dexamethasone)

Advance Care Planning

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

bulletAdvance directive (living will)
bulletHealth 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

Key teaching points
bulletDiscuss advance care planning with patients, and the option of hospice care, if appropriate.
bulletProvide the patient and his or her family with detailed information so that they understand the illness and associated treatments.
bulletInstruct patients to discuss their pain or other bothersome symptoms with their health care providers.
bulletEncourage patients to talk with their health care providers if they are feeling anxious, depressed, or fearful.
bulletDiscuss 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

The appearance of external hyperlinks does not constitute endorsement by the Department of Veterans Affairs of the linked Web sites, or the information, products or services contained therein.
bulletAmerican Academy of HIV Medicine. Palliative Care. The HIV Medicine Self-Directed Study Guide (2003 ed.). Los Angeles: AAHIVM; 2003.
bulletNational Hospice Organization. Guidelines for Determining Prognosis for Selected Non-Cancer Diagnoses. Alexandria, VA: National Hospice Organization; 1996.
bulletO'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.
bulletSelwyn 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.
bulletSelwyn 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.
bulletUniversity of Washington Center for Palliative Care Education. Module 1: Overview of HIV/AIDS Palliative Care. Accessed February 7, 2006.
bulletU.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.
bulletWeinreb 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.
bulletWorld Health Organization. Cancer Pain Relief and Palliative Care, Report of a WHO Expert Committee. Geneva: World Health Organization; 1990.