A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...

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A Guide to Primary Care of People with HIV/AIDS Chapter 15: Palliative and End-of-Life Care Figure 15-1b: Integrated Model of Care (curative and palliative together) Curative Care (= disease-specific, restorative) Palliative Care (= supportive, symptom-oriented) Bereavement Diagnosis Person with Illness Family Caregivers Disease Progression Dying Death Support services for families and caregivers Source: World Health Organization. Cancer Pain Relief and Palliative Care, Report of a WHO Expert Committee. Publication #1100804. Geneva: World Health Organization, 1990. 15 What does palliative care focus on? The following are essential elements of palliative care: • Goals of care are patient- and family-driven and frequently revised. • Relationships with an interdisciplinary team provide the mechanism for care. • Truth-telling and support for realistic decisionmaking are the norm. • Aggressive prevention and control of bothersome symptoms are paramount. • It is understood that psychosocial, emotional, and spiritual needs significantly impact symptoms. • Integration of a palliative care approach throughout the disease trajectory improves quality of life. • Early identification of and communication with a proxy decisionmaker is a priority. • Evaluation and treatment decisions are modified based upon prognosis. • Near the end of life, unnecessary drugs are eliminated and comfort measures provided. • Assisting the dying person to achieve psychosocial and spiritual closure is a goal of care. • Family and friends are provided with care techniques and communication skills. • Care of the caregiver and of the provider are essential aspects of providing supportive care. • Legal, ethical, and cultural aspects are acknowledged and respected. • It is recognized that dying is an inevitable part of life, not an enemy to be denied. • Anticipatory grieving and bereavement support for the family are included in care. How can palliative care be incorporated into primary HIV care? A palliative approach to HIV disease management begins by obtaining an accurate assessment of the patient’s support system, life goals, and preferences early in the disease process. Then the following activities are incorporated into the care plan: • Open appraisal of stage of disease with appropriate goal setting • Yearly review of goals (more frequently if symptomatic) • Anticipation of and prophylaxis for side effects of ART • Education regarding advance care planning well before patient is symptomatic • Use of standardized questionnaires to assess presence of symptoms and their impact on quality of life • Provision of separate medical appointments to manage symptoms such as pain or weight loss 124 U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau
A Guide to Primary Care of People with HIV/AIDS Chapter 15: Palliative and End-of-Life Care • Reduction of diagnostic studies and number of medications as prognosis shortens • Regular review of health power of attorney and support of patient wishes • Discussions of prognosis with patient and family soon enough to allow closure near the end of life • Referral to hospice/palliative home care when office visits become burdensome for patient • Maintenance of contact with family during bereavement period • Acknowledgement of staff members’ feelings of loss when patients die What are some common symptoms experienced by persons with advanced HIV disease? In surveys, patients receiving ART report experiencing the same symptoms as patients reported in the earlier years of the epidemic, but the frequencies of symptoms have changed (Mathews et al, 2000; Vogl et al, 1998). Fatigue, sadness, diarrhea, and fever continue to plague patients even when disease is controlled by ART. Pain is still experienced by up to 75% of patients and may be present in multiple areas at once, including the extremities and oral, esophageal, abdominal, or rectal sites. Adequate treatment for one type of pain may only expose another. This often raises the specter of “drug-seeking behavior” when in fact the patient is simply able to be aware of the secondary pain after the greater pain is relieved (see Chapter 13, Management of Substance Abuse). Peripheral neuropathy can be caused by ART, HIV disease itself, or unrelated disease such as diabetes. This pain does not seem to be related to the degree of control of viral burden, and cause must be sought through historytaking as many patients seem to overlook early manifestations such as numbness. Refer to Chapter 8, Symptom Management, as well as resources under Suggested Resources for management of pain and symptoms. How important is pain control in advanced HIV disease? Pain, as with any symptom, should be described, quantitated, treated, and promptly reevaluated with appropriate dose modification of therapy (see Table 15-1). In the Guidelines for Management of Cancer Pain, pain experienced by those with HIV disease is compared with the chronic pain experienced by persons with cancer, which often requires management with opioids (AHCPR, 1994). Unlike blood pressure, which might be regulated over weeks, pain should be controlled within the shortest time possible to prevent the development of long-term symptoms such as depression and anhedonia. A B C D E Table 15-1. Mnemonic for Assessment of Pain Ask about pain regularly; Assess systematically Believe the patient and family Choose treatment options appropriate to patient and setting Deliver medications on an “around-the-clock” basis with adequate “breakthrough” doses Evaluate results frequently; Empower patients and families to control pain The following guidelines are helpful in prescribing pain medication (American Pain Society, 1999): 1. Use a grading system (such as the scale of 0–10) to document pain severity and compare the number obtained to a second number following treatment to evaluate response. 2. Start with a dose that will acutely relieve the pain. This may be given intravenously or subcutaneously to achieve a rapid response. Care should be taken to observe for any signs of respiratory depression in opiate-naive patients who receive parenteral opioids. 3. Next, begin a low dose every 3–4 hours (based on the half-life of the drug) “around-the-clock,” not on an as-needed, basis. The initial dose should be chosen based on the age, size, and renal/hepatic function of the patient. (See Suggested Resources for additional guidance on pain management.) 4. A “ breakthrough dose” should also be prescribed every 1-2 hours prn equal to a sixth of the total daily opioid dose. This allows for development of a steady state drug level and avoids alternation of great pain intensity with somnolence. This is the same approach used to control hyperglycemia with a sliding scale of regular insulin based on glucometer readings; doses are based on pain scores. 5. When pain is fairly well controlled, it is appropriate to change the patient to a long-acting pain medication for ease of administration. The dose is calculated by adding together the total dose taken in 24 hours and dividing by the half-life of the new preparation. For example, for a medication meant to be given every 12 hours: divide the total dose by 2, and this number will be the dose every 12 hours. Don’t forget the breakthrough dose. This is a short-acting opioid, preferably of the same type as the long-acting one for use at times when the pain is not adequately controlled. 6. Other forms of administration include liquid formulations for persons with difficulty swallowing, rectal suppositories, “sprinkles” that can be mixed with soft food, and patches that allow absorption of the medication through the skin. 15 U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau 125
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