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 LifeDiscussions about “Do Not Resuscitate (DNR)” orders are best set into the larger context of the careplan. Once patient and family understand what medical care will provide, and how they can contributeto care, DNR orders are much less likely to become the focal point for a struggle around how toensure26thatpicasa patient is being cared for.Encouraging Life ClosureMaking sense of a life is not something that a clinician can do for a patient, but clinicians canfacilitate or encourage life review activities for patients and their families. These activities caninclude the following:• Telling and sharing stories—events that were important, funny, worth remembering;storytelling can be audiotaped or videotaped for a more permanent kind of legacy.• Deciding what to do with one’s things—giving a favorite sweater to a friend, or a treasuredstamp collection to a nephew.• Planning the patient’s memorial service—music, readings, people who will speak, someoneto preside over the service, whether to have a religious service or non-denominationalservice.Some clinicians use a mnemonic of five important conversations to complete for a peaceful death.These five items themselves lack the context and richness of a life, but they are helpful as brief remindersof the kinds of issues that patients may want to talk about with important people before death.• “Thank you”• “I forgive you”• “Please forgive me”• “I love you”• “Goodbye”Finally, most patients recognize some transcendent dimension to life, and addressing spiritual issuescan be critical near death. It is helpful to remember that spirituality differs from religion; spiritualityrefers to an individual’s relationship with the transcendent, whereas religion is a set of beliefs,practices, and language that characterize a community searching for transcendent meaningin a particular way. Even though many patients will feel alienated from particular religions, they mayyet have a spirituality that can help them make sense of their life and their death. Psychosocialclinicians and chaplains with experience in end-of-life care can be particularly helpful if they areavailable.CLINICAL MANAGEMENT OF IMMINENTLY DYING PATIENTSClinical Recognition of Imminent DeathIt is important that the family and patient understand normal landmarks in the dying process andovercome common misperceptions regarding imminent death. One such misperception is the beliefthat lack of appetite and diminished oral intake are causing profound disability and that fluid andnutrition are required. The normal dying process includes the following changes:• Loss of appetite• Decreased oral fluid intake, and decreased thirst• Increasing weakness and/or fatigue498U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau