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 LifeIn addition, providers must continually address the risks and benefits of continued antiretroviraltherapy as patients approach the end-of-life. Just as patients may benefit from ongoing HAART therapyeven in the face of resistant virus and declining immune function, there also may come a point wherecontinued26therapypicaswill yield little benefit and the patient’s quality of life may suffer due to medicationtoxicities. Providers need to be as familiar with the issues involved in stopping HAART as they arewith the criteria for initiating HAART in treatment-eligible patients. HAART is also by definitionfuture-oriented therapy, since the results are not expected in the short term but rather are seen inlonger-term survival. This may confuse decisionmaking related to end-of-life care planning. Therefore,it is important for clinicians to work closely with patients through the complex decisionmakingthat now surrounds HIV treatment in late-stage disease.These issues have made end-stage HIV/AIDS more similar to other chronic diseases. Research mustbe pursued regarding what “end-stage” actually looks like to document the prognostic indicators andsymptom management that can be useful. Without concrete knowledge, it is difficult to emotionallysupport patients near the end-of-life and providers run the risk of again not recognizing this diseasestage. Early recognition is absolutely critical for the kind of planning and closure patients needbefore death.Setting Reasonable Goals and Maintaining HopePatients and providers in the era of HAART may be lulled into thinking that HIV/AIDS has beencured, without noting the larger picture that HIV/AIDS remains a fatal illness. If this perspective islost there is danger of reacting to every decline as something that can and must be “fixed.” When aperson becomes acutely ill, curative interventions such as ventilatory support and cardiac pressorsare appropriate. But for those who are in poor nutritional condition or who have underlying liver orrenal disease, what initially presents as a curable illness may turn into serial organ failure.The provider must recognize how fear of death impacts management decisions (both by family andby provider). For some cultures it is imperative to continue what may even appear to be futile therapy(See Chapter 14: Culture and Care). Although it is difficult and time-consuming to have repetitiousconversations with loved ones about a realistic interpretation of the clinical picture, it is as much apart of medical management as writing orders for intravenous fluids.A patient’s family may be friends, other residents of a shelter, or even health/social workers. Havingtalked with patients and their support persons at a less emotional time certainly facilitates the processfor health care providers, but confronting a possible death is not easy even when the events thatattend it have been anticipated. Another complication, particularly in homeless or disenfranchisedpopulations, is underlying mental illness which requires additional communication and clinicaleffort. (See Chapter 21: Patient-Clinician Communication and Chapter 10: Psychiatric Problems.)In the face of even the bleakest situation it is important to not insinuate that there is nothing moreto be done. The patient and family should, at these times, be helped to redefine hopes or goals. Hopeis an intangible quality that allows us to overlook current discomforts to achieve a desired endpoint.As people near the end-of-life they turn from ‘doing’ to ‘being’ and may even experience a surge ofpositive feeling for family, self, or others. 10When people are known to be dying, goals can be adjusted to fit the time they have left. For example, thenew goal may be to live until an anniversary such as a birthday (within weeks) or a specific holiday. Thiscould mean celebrating that event sooner to include the dying person (for example, holding a birthdayparty this week rather than trying to make it to the next month). Nature, poetry, and music may take onnew meaning and can sustain one near the end-of-life as long as symptoms are controlled.XXIVU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 495