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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 21: Patient-Clinician CommunicationADVANCE DIRECTIVES■ In the 1980s, many prominent investigators believed that advance directives would allowpatients26to informpicastheir health care providers what kind of care they would want if they becametoo sick to speak for themselves. 27-29 Advance directives, including the living will and durablepower of attorney for health care, were promoted as a way to improve end-of-life care. (SeeChapter 18: Legal and Financial Issues.) A logical extension of this argument is that advancedirectives could diminish the need for clinicians to discuss end-of-life care with patients andtheir significant others. However, numerous studies have suggested that advance directives donot significantly affect the aggressiveness or costs of subsequent care 5, 7, 30 and do not changeend-of-life decisionmaking in hospital settings. 31-33 These studies have led many to lose faith inadvance directives. 34-36 However, despite a general disillusionment with the documents, theycan play an important role in some circumstances. For example, patients who would want theirsurrogate decisionmaker to be a same-sex partner or friend rather than their legal next of kinshould complete a durable power of attorney for health care. However, it is important thatclinicians inform patients that completion of the document is only the first step; patients mustalso discuss their values and their treatment preferences with this person. Furthermore, recentevidence shows that the most important factor associated with whether patients with HIVinfection have an advance directive is whether their primary care provider has discussed advancedirectives with them. 1 These data suggest that providers play an important role in increasingadvance directive completion.Advance care planning, defined more broadly as an ongoing discussion among patients, surrogatedecisionmakers, and providers, may be a more effective means of allowing patients’ wishes to befollowed if they become too ill to speak for themselves. Although to date there are no datademonstrating the effectiveness of advance care planning, such communication is an importantpart of good quality medical care. Advance care planning incorporates a broad set of goals andinvolves having the communication discussed in this chapter.CURRENT QUALITY OF COMMUNICATION ABOUT PALLIATIVE CARE■ There are limited data examining the quality of communication about palliative care withpatients with HIV infection or AIDS. One study assessing the quality of communication suggeststhat patients are relatively satisfied with this communication, 13 but this may be due, in part, topatients’ low expectations. Furthermore, in this study 25% of patients and their primary careclinicians did not agree about whether they had discussed end-of-life care, suggesting the qualityof communication may be limited.Previous researchers have assessed the quality of patient-clinician communication with generalhospitalized patients about “Do Not Resuscitate” orders. 37 These studies found substantial shortcomingsin the communication skills of clinicians, noting that physicians spent 75% of the timetalking and missed important opportunities to allow patients to discuss their personal valuesand goals of therapy. These investigators also showed that the majority of these physicians feltthat they did a good job discussing “Do Not Resuscitate” orders, but that they had very littletraining about how to hold these types of discussions with patients. 38 In a more recent study,these same investigators examined communication between primary care physicians andoutpatients about advance directives. 39, 40 In this study, investigators again found that physiciansXXIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 433