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) usually experience a manageable, chronic illness.
The death rate from AIDS, however, continues to be significant: approximately 15,000 deaths 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.
The patient with advanced HIV disease complains of one or more of the following:
- Chronic pain
- Decubitus ulcers or pressure sores
- Dry mouth
- Dry skin
- Increased secretions ("death rattle")
- Sleep disturbance
- Weight loss
Conduct a complete symptom-directed physical examination.
To evaluate pain, please refer to chapter Pain Syndrome and Peripheral Neuropathy.
A/P: Assessment and Plan
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.
|Symptom||Possible Causes||Disease-Specific or Curative Treatment||Palliative Treatment|
Abbreviations: ART = antiretroviral therapy; CNS = central nervous system; GERD = gastroesophageal reflux disease; NMDA = N-methyl- 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 antiretroviral therapy. Innovations in End-of-Life Care. 2002;4(3). Accessed December 1, 2013.
|Nociceptive, somatic, visceral|
|Increased secretions ("death rattle")|
|Decubitus ulcers, Pressure sores|
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.
- 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 provider.
- Encourage patients to talk with their health care provider 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 provider will be there to help them.
- 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. Accessed December 1, 2013.
- 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 December 1, 2013.
- 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. Accessed December 1, 2013.
- 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.