The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 22: Facilitating the TransitionSUPPORTING THE CAREGIVERS AT HOME■ Taking care of a loved one with advanced HIV disease can be very frightening if the caregiverdoes not26knowpicaswhat to expect. In addition to understanding the anticipated changes, the caregivermust also know how to promote the patient’s comfort in simple and successful ways. All membersof the interdisciplinary team should assist with teaching caregivers, normalizing their careexpectations, preparing them for anticipated physical changes, and supporting their care delivery.(See Chapter 20: Care for the Caregiver.)Ideally, the education of caregivers should begin during clinic or hospital visits before the caregiverassumes full-time responsibility for care. The education of caregivers and family members shouldinclude establishing and agreeing on the overall goals of care, the likelihood of symptoms, andthe role caregivers play in end-of-life care. Families need to know general principles of pain andsymptom management. This includes learning to take symptoms seriously, understanding howthe patient expresses discomfort, being knowledgeable of treatment options, and understandingwhether interventions have provided relief. Family members also need guidelines for handlingthemselves appropriately and knowing what sorts of situations require them to contact theirhealth care provider (see Table 22-8).A patient with advancing HIV can experience numerous symptoms related to the HIV disease,medications, HIV-related infections and conditions, and pre-existing conditions. Symptoms associatedwith advanced HIV disease include, but are not limited to, the following: 8,27,28• Symptoms associated with acute retroviral syndrome• Oral changes• Neuromuscular and neurological changes• Pain in multiple sites from different sources• Increasing fatigue• Fevers and night sweats• Changes in sleep patterns including insomnia• Anorexia and involuntary weight loss• Diarrhea• Skin changes including rashes, itching and edema (see Chapter 25: Preventionof Skin Breakdown)• Shortness of breath, cough and congestionGeneral symptom control at the end-of-life should focus on comfort issues, pain, noisy and moistbreathing, dyspnea, and restlessness. 29466U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau