The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 2: Overview of Clinical Issuesfamilies and caregivers frequently describe the sensation of being on a ‘roller coaster’ becauseit is exhausting and stressful not to know when death is going to occur. This uncertainty can alsogive rise to heightened anxiety, ambivalence within the family (wishing that it would just ‘beover with’ 26 and picas then feeling guilt over this), and equally conflicted feelings of relief when thedeath finally does occur. These complex emotions require sensitive and skilled attention by bothmedical and mental health care providers, and are best addressed by the interdisciplinary team.Bereavement is an important phase of the process of loss and recovery and is another area thatunfortunately is rarely addressed by most care providers and by medicine as a profession. Theloss of the patient that occurs upon death is also often accompanied by the family’s loss of therelationship with the care provider, which again may have developed over years of close interactionwith both patient and family. The care provider’s involvement in follow-up and contact withthe family during bereavement (ranging from writing a condolence letter to attending a funeralservice to providing counseling or other clinical follow-up to family members) can be extremelyhelpful and healing for both the family and the clinician. 60 Some or all of these practices shouldbe incorporated into routine follow-up care for families and additional significant others afterthe patient has died, whether or not the HIV care provider is also the primary care provider forother members of the family (see Figure 2-4b). Many clinical AIDS programs perform periodicmemorial services for patients who have died, attended by both professional care providers andfamilies/loved ones, which is both a powerful expression of remembrance and a part of theprocess of working through grief for the survivors. Chapter 16: Grief and Bereavement and Chapter20: Care for the Caregiver address these issues in more detail.IICONCLUSION■ As we enter an era in which the therapeutic possibilities for AIDS continue to expand, itremains important not to lose sight of the critical issues in end-of-life and palliative care thatremain central to the comprehensive care of patients and families affected by this disease. Thisbook attempts to provide useful information regarding these issues in the hope that providerscan move beyond the artificial distinctions between curative and palliative care and be able toprovide optimal care to all patients throughout the course of the illness.In the current system of medical care, primary care providers are best able to deliver integrated,comprehensive care over the continuum of illness in ways that combine biomedical and psychosocialapproaches within an interdisciplinary model of care. The group of providers able to provideintegrated care may include clinicians in primary care disciplines such as general internalmedicine, family medicine, and pediatrics, or as has been evidenced in HIV care to date, subspecialistssuch as infectious disease physicians or oncologists who have been able to take onthe full range of care required by the patient.Regardless of the training, what is required is the willingness for us to go beyond the falsedichotomies of curative vs. palliative care and recognize that the true role and responsibility ofthe physician and care provider are in accompanying the patient through the experience ofillness, doing whatever can and should be done at each step along the way. Part of this taskinvolves being familiar and current with the science of palliative medicine, just as with thescience of HIV medicine. Part of it also involves acceptance of the physician’s inability to alwaysdefeat death and acknowledgement of our own limitations and vulnerabilities as well as ourU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 31