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 Transitionher health care proxy of the patient’s condition and options for care so they can make decisionsfrom the most informed perspective possible.Question 10Do you have a living will? Who in your family is aware of it and has a copy?A living will demonstrates a clear and deliberate desire not to have life prolonged beyond itsnatural limits, and most frequently denotes withholding invasive life-sustaining interventions. Atrue copy of this document should be placed in the patient’s chart in the hospital, group residentialfacility, extended care, and home-based care settings. Patients should be informed whethertheir state honors this document as a legal determinant of care planning or merely as a guidethat can be overruled by their primary provider.Question 11Are you having any chronic pain or distressing symptoms?At an advanced stage of any disease, chronic symptoms not only serve as a reminder of advancingillness and provide a negative distraction from enjoying the limited length of life available,but also become internalized as an intense task of spiritual coping. It becomes impossiblefor a person to relish quality time with loved ones or complete important tasks if he or she isconstantly struggling with nausea, pain, diarrhea, itching, or other uncontrolled symptoms. Thepatient whose symptoms have been very difficult to control may benefit from the palliative symptommanagement of the hospice team, and such information can be stated in the explanation ofhospice care.Question 12What can we do to make your life more comfortable / manageable?Listening to the patient and family’s responses, repeating back their words, and letting themknow that you have heard them provide powerful validation for patients and families when clear,reasonable requests have been stated. It is most important to respond to their requests as quicklyas possible. A response may be as simple as letting the patient go home before the weekend to bewith family and completing future tests on an outpatient basis. Or, it may be as complex asarranging for minor age visitors to visit their loved one in a room with contact isolation.Table 22-1: Initiating Advanced Disease Planning Discussions1. What has your medical team told you about your condition? What does thisinformation mean to you?2. Tell me about your good days. What are you able to do on those days?3. When is the last time you had a day like that in the past two months?4. Have you had any bad days lately? What makes them bad?XXII5. What kind of assistance do you need on these bad days?6. If your condition worsens, do you want to go back to the hospital?7. What are your most meaningful goals at this time in your life? Is there anything wecan do to help you achieve them?8. In the event of your death, is there anyone or anything that you are worried about?U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 455