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 Transitiontion between provider and patient at such a difficult time. Provider communication issues andlegal issues are discussed elsewhere in this guide. (See Chapter 21: Patient-Clinician Communicationand Chapter 18: Legal and Financial Issues.)It is particularly important that people with HIV and their families understand that even insome of the most confining situations they have choices. Does the patient want to die at homeor in an institutional setting? Who does he or she want as a health care proxy? Who does thepatient want to act as guardian for his or her children? Who will care for pets? Who do patientswant to be with them at the end-of-life? One of the greatest losses humans suffer near the endof-lifeis the loss of autonomy. When it is possible, therefore, to give a patient a choice, even inseemingly trivial matters, it is important to do so.Developing a realistic understanding of the possible ways in which dying may occur improvesthe likelihood of families making choices consistent with their stated desires. Health care providerscan support families by assisting them in visualizing the dying and death of a loved one inbroad ways that are meaningful to the patient. 26It is particularly important that family members have a clear understanding of what they needto do, whom they can call, and where they can turn when death is imminent. Often, if a plan isnot clearly understood, caregivers may yield to the impulse to call an ambulance or bring thepatient to an emergency room. This risk is increased if home health aids or other visiting professionalsdo not clearly know the patient’s wishes. It is, therefore, a good idea to keep a briefwritten summary of the patient’s desires, along with copies of pertinent legal documents, in aprominent place near the bedside (see Table 22-7).Caregivers should be encouraged to discuss with their doctors and nurses the symptoms andsigns they can expect and what to do when these occur. A clear plan of action to address thesesymptoms and signs should be developed in consultation with the interdisciplinary team wellahead of the time it may be needed. It is most helpful to make sure that medications needed tomanage these symptoms are handy and that a list of all medications is kept up to date. Similarly,an easy-to-access list of important phone numbers (doctor, hospice, nurse, family members etc.)should be maintained so that, in the event of clinical deterioration, confusion is minimized.Table 22-7: Important Documents to Keep Updated and Readily Available1. Living will2. Durable power of attorney or health proxy documents3. A simple, clear statement of what the patient desires to be done in case of anemergency or crisis (i.e., do or do not call 911)4. Important phone numbers (friends, family, clergy, doctor, nurse, hospice or homecare agency)XXII5. Vital statistics (full name, date of birth, Social Security number, mother’s maidenname, place of birth)6. Health insurance and other financial documents7. Other important documents such as tutorship papers, bank and house papers,safety deposit information8. Burial policiesU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 465