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 LifePREPARING PATIENTS AND FAMILIES FOR IMMINENT DEATHEliciting and Addressing Patient and Family Caregiver Concerns26 picasPerhaps the most helpful first step in preparing patients and families for imminent death is toelicit their concerns. It may be necessary to precede this discussion with a check on patient and/orfamily member understanding of the clinical situation. (See Chapter 21: Patient-Clinician Communicationand Chapter 22: Facilitating the Transition to Home-Based and Hospice Care.) Askingpatients and family members for their assessment of the clinical situation can be useful in startinga discussion about care for imminent death. Straightforward, open-ended questions are helpful, suchas “What are your biggest concerns now?” In addition, it is often useful to specifically probe thefollowing important domains: 11• Optimizing physical comfort• Maintaining a sense of continuity with one’s self• Maintaining and enhancing relationships• Making meaning of one’s life and death• Achieving a sense of control• Confronting and preparing for deathTable 24-2 offers useful questions to help health care providers discuss these domains with patientsand their family members.Table 24-2: Useful Questions for Exploring Patient and/or Family ConcernsDomainQuestionPhysical comfortContinuity with one’s selfMaintaining and enhancingrelationshipsMaking meaningof life and deathAchieving a sense of controlConfronting and preparingfor deathTell me about your pain. Can you rate it on a 10-point scale?How much do you suffer from physical symptoms likeshortness of breath, fatigue, or bowel problems?What makes life most worth living for you at this time?If you were to die sooner rather than later, what would be leftundone?How are your family (or loved ones) handling your illness?Have you had a chance to tell your family (or loved ones) howthey are important to you?What kind of legacy do you want to leave behind?What would allow you to feel that going through this illness hasa purpose?Do you have spiritual beliefs that are important in how you dealwith this illness?How would you like your death to go?How much are you thinking about dying now?What are you thinking about it?Neglect of problems in these domains can lead to depression and difficulty adjusting to the situationfor both the patient and family members. The empirical demonstration of the importance of payingattention to these domains is just beginning. 12496U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau