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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 17: Ethical IssuesThe Principle of DeliberationThe principle of deliberation concerns the manner or process by which physicians communicatewith26 picastheir patients. According to this principle:Physicians should take an active role in eliciting from the patient the patient’sown understanding of his condition and the values that may or may not bear onits treatment. This dialogue should be critical and deliberative. It should be basedon the recognition that patients often do not have fully formed values and that theyoften make mistakes in thinking about how their values translate into particulartreatment decisions.This principle relies on a particular model of shared decisionmaking. Therefore, to explain thisprinciple more fully, we must say a few words about shared decisionmaking in general. Shareddecisionmaking depicts medical decision making as a collaborative process regulated by a divisionof labor between physician and patient. 8–11 In this process, the role of the physician is to use his orher training, knowledge, and experience to provide facts to the patient about the patient’s diagnosisand prognosis if alternative treatments (or the alternative of no treatment) are pursued. 8 Bycontrast, the patient’s role is to bring his or her values and preferences to bear on the assessmentof these alternatives. In this way, shared decisionmaking enjoins patients to participate activelywith their physicians in reaching decisions about treatment goals and options.Shared decisionmaking is particularly important in palliative medicine. It has been well documentedthat good patient care at the end of life closely correlates with the willingness of cliniciansto engage in discussions with their patients about prognosis and goals of care, advancedirectives, when to forgo specific treatment or diagnostic interventions and concerns aboutfamily support. 1, 7 Applied to these specific areas, the model of shared decisionmaking can helpclinicians honor the dignity of their patients and promote their well-being. 16This is true in two respects. First, in many areas of palliative medicine, there is a large measureof clinical discretion in decisions about which interventions are appropriate for specific patients.For example, there is no uniform appropriate response a physician must give to his or herpatients regarding when to forgo medical interventions, how to best initiate an advance directive,or the most appropriate method for relieving end of life suffering. On these matters, researchindicates that patients with AIDS have a wide variety of needs and understandings. 16–20Accordingly, the correct or most appropriate response to these issues will be known only afterthe physician has engaged in a process of careful questioning designed to elicit the patient’sgoals and expectations about the dying process. Indeed, with respect to these issues, the qualityof patient care will depend largely on the skill of the clinician in reaching an understanding of1, 7, 16, 19the patient’s values and needs and coaxing them into clarity.Second, the preparation and approach to death involves patients in a series of unique and novelexperiences. The health care provider, in contrast, will probably have cared for a number ofdying patients and be much more familiar with the dying process than will his or her patient. 16The fact that every patient dies only once and every death is a new experience 16 presents aspecial justification for shared decisionmaking between the clinician and patient in the palliativecare context. Through shared decisionmaking the clinician can promote patient well-beingby realistically describing to the patient what he or she can expect from the dying process.Although the clinician may not be able to predict with certainty when a patient is going to die,352U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau