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 Issuesshared decisionmaking enables the clinician to assist the patient in setting reasonable andachievable goals. This model of decisionmaking also enables clinicians to identify mistakenbeliefs that their patients may hold about what they should expect from the dying process. Forexample,26somepicaspatients with AIDS-related pain may hold the belief that their pain is inevitableand that it is improper or useless to report it. 11, 17, 21 Collaborative discussion with their physicianis necessary to identify and correct these mistaken beliefs.The extent to which shared decisionmaking serves the ideals of honoring patient dignity andpromoting patient well-being turns, in part, on how the role of the physician is conceived in thedecisionmaking process. On this matter, there are competing understandings. 9 One might argue,for example, that physicians should provide their patients with adequate information andthen simply let the patients decide for themselves which course of treatment should be undertaken.Against this, we believe that physicians—at least physicians in palliative medicine—should adopt a more “deliberative” stance with their patients. This means they should initiate areflective and critical dialogue with their patients about how the patient’s values and preferencesbear on the treatment options available to them. The point of such a dialogue should beto help patients come to reasoned decisions about the treatment options they face. 11It is important to understand that the principle of deliberation does not direct physicians to correct,modify, or change their patients’ values. Rather, it asks health care providers to take an activerole in stimulating patients to deliberate about their values in a reasoned and well-informed manner.The goal of this is to improve the understanding of both the physician and the patient.One objection to deliberative decisionmaking might be that it seems unduly time-consuming,hence clinically inappropriate. For those who specialize in delivering primary and palliativecare to patients living with HIV/AIDS, however, these demands need not be excessive. Most HIV/AIDS clinicians as a matter of course already establish long-term relationships with their patientsliving with HIV/AIDS, providing both the physician and patient ample opportunities toengage in effective deliberation about the future palliative care needs of the patient. 16The fact that there is no uniquely correct treatment option for many situations at the end of lifefurther underscores the importance of deliberation in this context. Depending on the valuesand preferences of the patients, a regimen that is good for one patient may be inappropriate foranother, even though both have the same underlying HIV/AIDS diagnosis. Accordingly, in manyinstances, to determine the correct regimen for a particular patient, the physician will need toengage the patient in deliberative decisionmaking. 11 For these reasons, then, a strong caseexists for holding that the principle of deliberation should be a fundamental ethical principleguiding palliative care.XVIIThe Rule of Double EffectDeliberative decisionmaking helps clinicians honor patient dignity and promote patient wellbeingthrough a process of reasoned dialogue that identifies, clarifies, and, where necessary,helps their patients to modify their preferences for care at the end of life. However, taken byitself, the principle of deliberation is insufficient for ethically appropriate palliative care. Whilethe principle of deliberation enjoins clinicians to discuss their patients’ preferences with respectto end-of-life care, it offers no guidance on the type of ends or goals that clinicians maypermissibly advance. Nor does it speak to the issue of when it is permissible for clinicians torefuse to comply with the desires of their patients that emerge in the deliberative process.U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 353