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 Transition• Reduced strength and ability to move• Changing sleep and rest patterns• Loss of control of bladder and bowels• Described “supernatural” experiences• An energy surge26 picasReduced Intake and Interest in Food and FluidsCaregivers should be taught not to force food or drink into the patient’s mouth nor try to useguilt to manipulate the patient into eating or drinking. Small chips of ice or frozen juices may berefreshing so long as the patient can swallow without difficulty. If the patient does want to eat,small frequent feedings of desired foods and fluids may be more manageable and appealing thanlarge meals. The team nutritionist can be very helpful in teaching techniques that may enhancecomfort, nutritional quality, and feeding assistance with swallowing changes. Most important,families and caregivers need to know that these changes do not cause pain and that if painoccurs medical attention is required.Decreased Interest and AttentionAs the body weakens, a person’s involvement with other people, pets, hobbies and other interestsmay decrease. Individuals may lose interest in favorite activities or topics of conversation.They may want to be alone or with just one person at a time or ask that visits be shorter thanusual. Caregivers need to be reminded that the patient is easily tired and weak. Although it ishard for caregivers when they feel shut out, they can be helped to understand that withdrawalfrom life is a natural part of preparation for death.Reduced Strength and Ability to MoveFamilies and caregivers need to know that it is natural for a patient to become weak andrequire increasing amounts of rest to perform even simple tasks. It is important to assist andsupervise all of the patient’s activities to promote safety.Changing Sleep and Rest PatternsAs an individual gets closer to the end-of-life, it is normal for day and night sleeping patternsto reverse. Rest is important for everyone. If the patient is unable to sleep for several nights,pain should be assessed and health care providers should be notified. When fatigue is profound,patients may sleep with their eyes and mouth open and appear unresponsive. Caregivers shouldunderstand that this is expected and that, at these times, their role should shift from “doing for”to “being with.” This means that families should sit or rest near their loved ones, hold theirhands, apply lotion to their skin, soothe their faces with a warm moist cloth, play music, orconverse as the patient would expect them to do.Most importantly, caregivers should not attempt to awaken the patient by shaking or speakingloudly to them. They should reintroduce themselves to the patient upon every contact and avoidasking “do you know who I am?” Loved ones experience great pain when they are not recognizedand patients may withdraw from interactions if they fear they are causing pain. As the patientresponds less, families should continue to speak directly and normally and assume that thepatient can hear them, as hearing is the last of the senses to be lost.470U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau