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 2: Overview of Clinical IssuesIn addition, even prior to the end of life, providers need to develop a keen awareness of theirown feelings regarding patient choices. Providers may actually feel anger at patients over failureto adhere to antiretroviral therapy or for active substance abuse and other self-destructivebehaviors. 26 picas Re-examining the goals of care, involving the interdisciplinary team, and continuingto engage and provide follow-up for patients—without judging their choices or inability to adherewith recommended therapy—will help to maintain and enhance the clinical relationship.The fact that the new generation of HIV caregivers has not had the experience of their earliercolleagues—in which there was no avoidance of death and no immediate prospect of forestallingit with disease-specific therapy—may also be a contributing factor in the difficulty that providersexperience in addressing end-of-life issues. While we would hope that the experience of theearly years of the AIDS epidemic will never have to be repeated, we can also hope to retain thelessons that it brought regarding the importance of accompanying patients through illness untildeath, of not seeing death as an automatic failure of the clinician, of appreciating the profoundimportance of ‘being there,’ and of understanding the role of the caregiver as ‘caring’ and notnecessarily ‘curing.’ 58 As outlined above regarding palliative and disease-specific therapy, thestrategy should not be ‘either-or,’ but rather ‘both-and,’ and providers need to be as skilled andcompetent in anticipating and addressing the end-of-life issues as they are in interpretingsurrogate marker test results and recommending effective combination anti-retroviral treatmentregimens.Another area in which caregivers can have an invaluable impact is in the support and educationof families as patients move through the last stages of their illness, especially for patients whoremain at home. Ongoing visits by nursing and other staff, either at home or in an institutionalsetting, can be extremely helpful in addressing concrete concerns and questions about prognosis;the expected changes that occur toward the end of life; and some of the physical, emotional, andspiritual issues that families can expect. It may be helpful to describe these events in terms ofthe estimated prognostic timeframe covering the last months, weeks, and days of life, along withthe responses that families may consider to help their loved ones through this process. Table 2-6 describes the guidance that the clinician can provide caregivers as the patient moves throughthe last stages of illness. As with other aspects of palliative care, a team approach and sustained,consistent interaction over time are key elements in a successful therapeutic relationship.In addition to the myriad psychosocial issues outlined above, and the more clinical psychiatricissues dealt with in more detail in Chapter 10 (Psychiatric Problems), two other importantpsychosocial themes are (1) multiple loss and (2) grief and bereavement. While the phenomenonof multiple loss 59 in the AIDS epidemic has long been identified for patients, providers, andcommunities, this is compounded in the current era because of the long-term relationships thathave been built up over years of patient-provider interaction. Even though the absolute numberof deaths may be declining, the impact of each loss may be as great or greater. This can result ina cumulative burden of grief that can begin to have deleterious effects on providers over time. Itis important to recognize, anticipate, and respond to these effects, and to appreciate that ‘emotionalhealth-maintenance’ and self-care are not signs of wasteful self-indulgence but ratherimportant aspects of maintaining our perspective and effectiveness as HIV care providers.Grief both anticipates the loss and follows the loss, with reverberations into the future for allthose who have been affected. With the current chronic disease-type trajectory typical of HIVinfection (see Figure 2-2), with many exacerbations and remissions in the declining stages,28U.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 2: Overview of Clinical IssuesTable 2-6: Clinical Issues and Family/Caregiver Support As Patients Approach the End of Life *PROGNOSTIC TIME-FRAME FOR APPROACHING END-OF-LIFEClinical Issues Months Weeks Days Last 24-48 HoursMedical• Somnolence• Restlessness• Agitation• Gradual or sudden loss ofconsciousness• Further changes in skin color• Periodic breathing• Gurgling• Moaning• Delirium26 picas• Incontinence• Sleep pattern reversal• Sweats• Confusion• Cognitive failure• Changes in skin (pallor)• Respiratory changes• Increased time in bed• Insomnia• Decreased interestin food & drink• Decreased energy• Difficulty walking• Increased fatigue• Increased sleep• Decreased interest in eating• Increased pain, othersymptoms• May be unresponsive orminimally responsive• Confusion, delirium, inabilityto express emotions clearly• More peaceful, quiet• Increased communication• Signs of final closure/Saying“Goodbye”• Increased anxiety• May talk about funeralarrangements• Periods of intense emotionalexpression• “Bargaining”• Life review, discussion of pastevents• Reassuring family• Fear of sleep• Increased need for closeness,talking, physical contact• Social withdrawal• Increased sadness, crying• Seeking closure, expressingfeelings of loveEmotional• Perception of otherdimensions of experience• Increased sense of peace• Deep peaceful sleep• Increased clarity in thinking& emotions• Increased sense of peace andtranscendence• Dreams or visions of deceasedloved ones• Increased faith in God• Periods of quiet reflection• Increased interestin spiritual matters• Prayer• Contact with religious/spiritual leader• Questioning faithSpiritualIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 29
Page 4 and 5: DedicationA Clinical Guide to Suppo
Page 6 and 7: Lynn A Jansen, RN, PhDAssistant Res
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The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

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