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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 24: Medical Care at the End of Life• Decreasing blood perfusion, including decreased urine output, peripheral cyanosis andcool extremities• Neurologic dysfunction, including delirium, lethargy, and coma, and changes in respiratorypatterns26 picas• Loss of ability to close eyes• Noisy breathing as pharyngeal muscles relaxIn particular, neurologic dysfunction can sometimes result in terminal delirium which can includea mounting syndrome of confusion, hallucinations, delirium, myoclonic jerks, and seizures prior todeath. Recognized early, this can be treated with neuroleptics such as haloperidol or chlorpromazine.For more information see Chapter 10: Psychiatric Problems.When death occurs, the clinical signs include the following:• Absence of heartbeat and respirations• Fixed pupils• Skin color turns to a waxen pallor and extremities may darken• Body temperature drops• Muscles and sphincters relax, sometimes resulting in release of stool or urinePreparation, which can involve the family, should include the following:• Creating a peaceful environment to the patient’s liking• Preparing instructions about whom to call (usually not 911) when death occurs• Taking time to witness what is happening• Creating or using rituals that can help mark the occasion in a respectful wayWhen death occurs, families should be encouraged to take whatever time they need to feel what hashappened, and say their goodbyes. There is no need to rush the body to a funeral home, and somefamilies want to stay with the body for a period of time after death.Symptom Management in the Last Hours of LifeCertain symptoms, some of which are covered elsewhere in this book, are especially common atthe very end-of-life. Table 24-4 presents common symptoms and ways to manage them, to make patientsmore comfortable in their last hours of life.Considering Withdrawal of Nutrition and HydrationIn every culture, giving nourishment is seen as an act of caring as well as a method for improvinghealth. As a person approaches death, eating and drinking become more difficult as one must haveadequate strength to chew and to maintain an upright position. The palliative care team must findother ways for the family to offer support and care without forcing a dying person to take in moresubstance than they can handle. As the energy requirements diminish, forcing fluids in particularmay cause more difficulty than withholding liquids might.Excess fluid tends to localize in the pharynx causing a gurgling sound or “death rattle,” which canbe distressing to families. Fluids also accumulate in the lungs, the abdominal cavity, and the lowerextremities. As the activity level of the patient decreases, this excess fluid will be reabsorbed by thepatient, making oral intake of fluids less crucial.XXIVU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 499