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 Communicationsignificant others concerning withholding or withdrawing life support. It is a disservice to leavea significant other feeling like they were alone in making the decision to “pull the plug” on aloved one in situations where ongoing life support therapy is unlikely to provide significant benefit.26 picasClinicians should summarize the major points and ask patients and significant others if thereare any questions. This is a good time to tolerate silence, as it may take some time for theuncomfortable questions to surface.Finally, before completing a discussion about end-of-life care, clinicians should ensure that thereis an adequate follow-up plan. This often means a plan for when the clinician will meet with thepatient or significant other again and a way for the patient or significant others to reach theclinician if questions arise before the next meeting.UNDERSTANDING OUR OWN DISCOMFORT DISCUSSING DEATH■ Discomfort discussing death is universal. This is not a problem unique to physicians, nurses,social workers, or other health care providers, but has its roots in our society’s denial of dyingand death. Medical schools and nursing schools have only recently begun to teach students howto help patients and families through the dying process and still do so in a limited way. 63 Majormedical textbooks have had scant information about end-of-life care. 42 For all these reasons, itis not surprising that many clinicians have difficulty talking with their patients and others aboutpalliative or end-of-life care. Furthermore, the medical culture is one of using technology tosave lives, and for many clinicians discussing dying and death is even more difficult in thistechnologic, aggressive care era. To compound this difficulty, clinicians can also feel that apatient’s death will reflect poorly on their skills as a clinician and represents a failure on theirpart to save or extend the patient’s life.It is important for clinicians to recognize the difficulty they have discussing dying and death. Ifclinicians acknowledge this difficulty, they can work to minimize some of the common effectsthat such discomfort can cause. For example, discomfort discussing death may cause cliniciansto give mixed messages about a patient’s prognosis or to use euphemisms for dying and death ormay even cause clinicians to avoid speaking with a patient or their significant others. Recognizingthis discomfort and being willing to confront it is the first step in overcoming these barriers toeffective communication about dying and death with patients and their significant others.60, 61Resources exist to help clinicians address these issues.CONCLUSION■ Discussing palliative care, dying, and death with patients and their significant others is anextremely important part of providing good quality care for patients with a chronic, lifethreateningdisease such as HIV infection or AIDS. While there is little empiric research toguide clinicians in determining the right time or the most effective way to have theseconversations, there is a developing experience and an increasing emphasis on making this animportant part of the care we provide and an important part of training for students. Much likeother clinical skills, providing sensitive and effective communication about palliative care requirestraining and practice as well as planning and preparation. While different clinicians may havevarying approaches and should change their approaches to match the needs of patients andtheir families, this chapter reviews some of the fundamental components of discussing palliativecare and end-of-life care that should be part of the care of most patients with potentially lifethreateningillnesses.442U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau