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

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A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 21: Patient-Clinician CommunicationWHEN TO TALK ABOUT PALLIATIVE CARE■ It is impossible to be prescriptive about the “right” time to discuss palliative and end-of-lifecare,26exceptpicasto 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 before they initiate communication about palliative and end-of-life care with patientsor their significant others. Patients and significant others may be just beginning to think aboutwithdrawing life-sustaining treatments while clinicians are feeling increasingly frustrated atproviding care they believe is no longer indicated. Alternatively, the patients and significantothers may be considering withdrawal of life-sustaining treatments well before the health careteam. The team members may also vary in the timing with which they believe that life-sustainingtherapy should be withheld or withdrawn.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 to this58, 59conclusion earlier than physicians, which can lead to extreme frustration for some nursesand interdisciplinary conflict for physicians and nurses.A potential solution to this difficulty is to begin discussions with the health care team, patients,and 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, and the patients’ values andattitudes toward medical therapy. These early discussions may foreshadow or set the stage forsubsequent discussions about transitioning to palliative care goals or about withdrawing orwithholding life-sustaining treatments. These discussions can also be a way for clinicians to letpatients and their significant others know that palliative care and end-of-life care are importanttopics that the clinician is willing to discuss.HOW TO TALK ABOUT PALLIATIVE CARE■ Because discussing palliative care with patients and their significant others is an importantpart of providing high quality care for patients with life-threatening diseases, these discussionsshould be approached with the same care and planning that are given to other important medicalprocedures. For example, 1) time and thought should be put into the preparations needed priorto 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 and whatwill be covered during the discussion, and 4) what is likely to happen after the discussion shouldbe anticipated. These four issues address the processes that ideally should occur before, during,and after the discussion. Table 21-1 outlines some of the steps that may facilitate goodcommunication about palliative care and these are described in more detail below.Table 21-1: Components of a Discussion About End-of-Life CareI. Making Preparations before a Discussion about End-of-Life Care• Review previous knowledge of the patient and/or their significant others• Review previous knowledge of the patient’s attitudes and reactions• Review your knowledge of the disease – prognosis, treatment options• Examine your own personal feelings, attitudes, biases, and grieving• Plan the specifics of location and setting: choose a quiet, private place• Have advance discussion with the patient or family about who will be present436U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 21: Patient-Clinician CommunicationII.Holding a Discussion about End-of-Life Care• Introduce everyone present26 picas• If appropriate, set the tone in a nonthreatening way: “This is a conversationI have with all my patients…”• Find out what the patient or significant other understands• Find out how much the patient or significant other wants to know• Be aware that some patients do not want to discuss end-of-life care• Discuss prognosis frankly in a way that is meaningful to the patient• Do not discourage all hope• Avoid temptation to give too much medical detail• Make it clear that withholding life-sustaining treatment is NOT withholdingcaring• Use repetition to show that you understand what the patient or theirsignificant other is saying• Acknowledge strong emotions and use reflection to encourage patients ortheir significant others to talk about these emotions• Tolerate silenceIII.Issues That May Be of Special Importance forSome Patients with HIV/AIDS• If patients have strong treatment preferences, discuss living will or otheradvance directive• Consider durable power of attorney and importance of having discussions oftreatment preferences, goals, values with that person• Discuss cultural or religious views, attitudes, and preferences• Consider discussing preferences regarding place of death and preferencesregarding burial or cremationIV.Finishing a Discussion of End-of-Life CareXXI• Achieve common understanding of the disease and treatment issues• Make a recommendation about treatment• Ask if there are any questions• Ensure basic follow-up plan and make sure the patient and/or significantothers know how to reach you for questionsU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 437
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DedicationA Clinical Guide to Suppo
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Lynn A Jansen, RN, PhDAssistant Res
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TABLE OF CONTENTSPart IChapter 1Cha
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IChapter 1.26 picasHIV and Palliati
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IA Clinical Guide to Supportive and
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A Clinical Guide to Supportive and
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Chapter 8.26 picasOral ProblemsDavi
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Chapter 14.26 picasCulture and Care
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DRUGS AND THERAPIES INDEXNOTES: Ent
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The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

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