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

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

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

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A <strong>Clinical</strong> <strong>Guide</strong> <strong>to</strong> <strong>Supportive</strong> <strong>and</strong> <strong>Palliative</strong> <strong>Care</strong> <strong>for</strong> <strong>HIV</strong>/<strong>AIDS</strong> • Chapter 21: Patient-Clinician CommunicationWHEN TO TALK ABOUT PALLIATIVE CARE■ It is impossible <strong>to</strong> be prescriptive about the “right” time <strong>to</strong> discuss palliative <strong>and</strong> end-of-lifecare,26exceptpicas<strong>to</strong> say that we should talk about it earlier than we usually do. Oftentimes, clinicians,particularly physicians, wait until they have decided that life-sustaining treatments are no longerindicated be<strong>for</strong>e they initiate communication about palliative <strong>and</strong> end-of-life care with patientsor their significant others. Patients <strong>and</strong> significant others may be just beginning <strong>to</strong> think aboutwithdrawing life-sustaining treatments while clinicians are feeling increasingly frustrated atproviding care they believe is no longer indicated. Alternatively, the patients <strong>and</strong> significan<strong>to</strong>thers may be considering withdrawal of life-sustaining treatments well be<strong>for</strong>e the health careteam. <strong>The</strong> team members may also vary in the timing with which they believe that life-sustainingtherapy should be withheld or withdrawn. In the acute care setting, nurses often come <strong>to</strong> this58, 59conclusion earlier than physicians, which can lead <strong>to</strong> extreme frustration <strong>for</strong> some nurses<strong>and</strong> interdisciplinary conflict <strong>for</strong> physicians <strong>and</strong> nurses.A potential solution <strong>to</strong> this difficulty is <strong>to</strong> begin discussions with the health care team, patients,<strong>and</strong> significant others early in the course of a chronic illness. However, early in the course ofcare these discussions may focus on prognosis, goals of therapy, <strong>and</strong> the patients’ values <strong>and</strong>attitudes <strong>to</strong>ward medical therapy. <strong>The</strong>se early discussions may <strong>for</strong>eshadow or set the stage <strong>for</strong>subsequent discussions about transitioning <strong>to</strong> palliative care goals or about withdrawing orwithholding life-sustaining treatments. <strong>The</strong>se discussions can also be a way <strong>for</strong> clinicians <strong>to</strong> letpatients <strong>and</strong> their significant others know that palliative care <strong>and</strong> end-of-life care are important<strong>to</strong>pics that the clinician is willing <strong>to</strong> discuss.HOW TO TALK ABOUT PALLIATIVE CARE■ Because discussing palliative care with patients <strong>and</strong> their significant others is an importantpart of providing high quality care <strong>for</strong> patients with life-threatening diseases, these discussionsshould be approached with the same care <strong>and</strong> planning that are given <strong>to</strong> other important medicalprocedures. For example, 1) time <strong>and</strong> thought should be put in<strong>to</strong> the preparations needed prior<strong>to</strong> holding this discussion, 2) the location of the discussion should be planned, 3) if possible, apreliminary discussion should be held with the patient about who should be present <strong>and</strong> whatwill be covered during the discussion, <strong>and</strong> 4) what is likely <strong>to</strong> happen after the discussion shouldbe anticipated. <strong>The</strong>se four issues address the processes that ideally should occur be<strong>for</strong>e, during,<strong>and</strong> after the discussion. Table 21-1 outlines some of the steps that may facilitate goodcommunication about palliative care <strong>and</strong> these are described in more detail below.Table 21-1: Components of a Discussion About End-of-Life <strong>Care</strong>I. Making Preparations be<strong>for</strong>e a Discussion about End-of-Life <strong>Care</strong>• Review previous knowledge of the patient <strong>and</strong>/or their significant others• Review previous knowledge of the patient’s attitudes <strong>and</strong> reactions• Review your knowledge of the disease – prognosis, treatment options• Examine your own personal feelings, attitudes, biases, <strong>and</strong> grieving• Plan the specifics of location <strong>and</strong> setting: choose a quiet, private place• Have advance discussion with the patient or family about who will be present436U.S. Department of Health <strong>and</strong> Human Services • Health Resources <strong>and</strong> Services Administration • <strong>HIV</strong>/<strong>AIDS</strong> Bureau

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