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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 23: Medical Care in Advanced AIDSTaken together the Brechtl and Freedberg studies imply that the evolution of drug resistance isassociated with increasing illness, a reduced quality of life and diminished life expectancy. In agroup of patients for whom short survival can be an expected outcome, therefore, disease-directedtherapy26andpicaspalliative care can and should be provided simultaneously, with palliative care playingan increasingly important role in the care of these patients over time.Second Line, Salvage, and Investigational TherapyThere are data in a study by Durant, et al., suggesting that second line therapy, particularly whenguided by genotype testing, is valuable in increasing longevity. 7 Indeed, for some patients viral suppressionon second line therapy may last for years. This same study, however, also indicated that asubstantial number of patients progressed despite therapy or were intolerant of therapy. An AIDSClinical Trial Group (ACTG) study of response to second line treatment further reinforces that secondline treatment is a marker for advanced disease. 8 Institution of second line therapy shouldtherefore prompt recognition that, while another remission is possible, treatment failure may beimmediate and is probably inevitable. 9 Thus, conversations about the end-of-life and the role ofpalliative care are indicated when second line therapy is considered or initiated. This is even morerelevant as patients undertake third and fourth line therapy after multiple treatment failures.The outlook for patients on salvage therapy or those participating in clinical trials following exhaustionof all conventional regimens is very poor. Initiation—indeed, consideration—of salvage orinvestigational therapy under these circumstances carries with it the imperative to reassess thegoals and burdens of treatment with patients and to explore the benefits and risks of intensive palliativecare. These discussions may inform decisions about stopping or declining further antiretroviraltherapy or prophylaxis against or suppression of opportunistic infections, depending on the definedgoals of treatment and the perceived effects of continued disease-directed therapy.• Clinical Ethics and Practice in Salvage and Investigational TherapyThe decision to continue second line, salvage or investigational therapy has several ethical andpsychological implications which can complicate discussions about palliative and disease-directedcare.Although cancer and AIDS differ in many ways, the experience with cancer can inform AIDS clinician-investigators.Patients who enter investigational cancer trials participate in part because of protocol eligibility,such as disease and functional criteria. Many advanced stage cancer patients who make decisionsto participate in cancer clinical trials are highly motivated and feel that “active” treatment is thebest course for them. Patients are also influenced by their physicians and their own sense of10, 11, 12altruism.These patients often expect a response to therapy, a reduction in symptoms and improved and increasedquality communication with their physician. 11 They equate therapeutic efforts with superiorquality of life and do not consider any other options or quality of life ramifications. Palliative care,therefore, is not a consciously considered option for many patients with advanced cancer who areenrolled in cancer clinical trials, and is not consistently offered. Cancer patients who enroll inclinical trials overestimate their survival, making these patients more likely to choose putative lifeextendingtherapy over palliative care. 13482U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau