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 Issuesnoted, “there are no agreed-upon and validated standards or measurement instruments for healthcare providers to assess suffering and to discriminate how much there is. Similarly, there are noclear interventions that should be instituted and no clear understanding of when adequate palliativemeasures26 picasfor suffering have been tried and failed.” 6 This uncertainty over the notion ofsuffering has important ethical implications in the delivery of palliative medicine, and we shallreturn to it when we discuss the practice of terminal sedation, below.Much of palliative medicine is focused on the phenomenological interests of patients at the endof life. But the nonphenomenological interests of these patients should not be ignored. Theseare interests that are not well characterized in terms of maintaining the patient’s comfort. Apatient’s interest in having his privacy respected or in remaining alert even if his pain is not fullycontrolled are examples of such nonphenomenological interests. These are discussed here becauserecent studies suggest that it is easy for clinicians to overlook them. 7 Taking these interestsseriously often requires clinicians to engage in active deliberation with their patients abouttheir treatment options.The two theoretical ideals of palliative medicine that have been discussed—the ideal of honoringthe dignity of the patient and the ideal of promoting the patient’s well-being—will sometimescome into conflict. Not everything that furthers the interests of a patient is compatiblewith honoring him as a being worthy of respect. Determining how to respond appropriately tothese potential conflicts forms an important part of the ethics of palliative medicine.MEDIATING PRINCIPLES■ The theoretical ideals of palliative medicine guide clinicians in determining whichinterventions and treatment options are appropriate for their patients. But, on their own, theseideals cannot resolve the ethical problems that arise in the palliative care setting. These situationsrequire recourse to ethical or mediating principles. The term mediating is used because theyintercede between the theoretical ideals discussed above and the concrete cases cliniciansencounter.There are several important ethical principles that are relevant to the practice of palliativemedicine. This chapter will discuss three of them: 1) the Principle of Deliberation, 2) the Ruleof Double Effect, and 3) the Principle of Proportionality. Each of these principles has beendiscussed in the medical ethics literature. 9–15 However, they have not been discussed systematicallyin the context of palliative medicine and in the treatment of patients living with HIV/AIDS.Before discussing these principles a few words of caution are in order. First, the three principlesthat we shall discuss are not the only ethical principles relevant to palliative medicine.Given the space constraints of this chapter, we cannot present an exhaustive discussion of theseprinciples. However, the three principles that we will discuss are very important; and an understandingof them should provide an understanding of how ethical principles can be applied toconcrete cases in palliative medicine. Second, some of the principles that we will discuss—andin particular the rule of double effect—are controversial. We shall, however, indicate to thereader when we advance claims that not all medical ethicists would agree with and we shallprovide references to alternative points of view.XVIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 351