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 23: Medical Care in Advanced AIDSPast efforts at prognosis using the Child-Turcotte-Pugh classification have not been consistent becauseof the subjective nature of several indicators. A recent report used objective laboratory parametersto assign prognosis in advanced liver disease: the Model for End Stage Liver Disease (MELD).26 picas38A revised scoring system uses three laboratory tests (INR, total bilirubin, and creatinine) to assign aprognosis in chronic liver disease.This revised scoring system has been utilized to stratify patients for liver transplantation, which hasrecently been recognized in many centers as a feasible option for people with AIDS. The scoringsystem may also prove useful in determining which patients deserve a greater emphasis on palliativeor hospice care. In fact, any individual with a high MELD score and on the waiting list for an organis also a candidate for hospice. 39 If the patient receives a liver, then the hospice benefit can berevoked. Most patients awaiting transplantation, however, will not receive a liver, will die, and wouldbenefit greatly from aggressive palliative care.Large hepatocellular carcinoma is an additional complication of chronic hepatitis and an absoluteindication for palliative or hospice care.Intensive Care Unit / Mechanical Ventilation / PCPMerely being in an intensive care unit is an indication for palliative care regardless of diagnosis.40, 41 AIDS is no exception. Effective palliative care can be provided in an ICU with propertraining. 41 42, 43Pneumocystis carinii pneumonia is still the most common AIDS-defining illness.Acute respiratory failure occurs in 5% to 30% of patients. Intubated AIDS patients with PCP experiencemortality approaching 50%. 44The attitude of patients with advanced AIDS toward mechanical ventilation at end-of-life has beenreported. 45 Eighty-seven percent of 57 patients responded that withholding mechanical ventilationin the setting of “futility” was acceptable. Therefore, while mechanical ventilation may be veryappropriate for the patient with the initial diagnosis of AIDS and PCP, the patient with advancedAIDS and drug resistant virus may be quite comfortable discussing alternatives to hospitalization andventilation.Thus palliative care and even an end-of-life style of support for the patient and family in these circumstancesshould be considered routinely and provided aggressively.QUALITY OF LIFE IN ADVANCED AIDS■ A study has demonstrated that while asymptomatic patients with HIV had physical functioningequivalent to the U.S. general population, patients with symptomatic AIDS were impaired much likepatients with other chronic illness (gastro-esophageal reflux disease (GERD), prostate disease,depression, diabetes) and those with advanced AIDS scored similar to patients with end-stage renaldisease (ESRD). 46 One difference worth noting is that all three groups of people with HIV in the studyscored lower on the Emotional Well-Being Scale than all comparison chronic illness groups exceptpatients with primary depression.Symptom Management and Quality of LifePatients with advanced HIV disease often face a vexing array of symptoms: nausea, fatigue, weightloss, pain of various origins and presentations, headaches, neuropathies, diarrhea, fevers, shortnessof breath, confusion, loss of memory, AIDS-related dementia, and others. Symptoms also arise as aresult of therapy. Many of the drugs used in HAART can cause substantial side effects. HAART’s com-486U.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 23: Medical Care in Advanced AIDSplicated drug regimens, opportunistic infection prophylaxis and treatment of other conditions attimes give rise to complex and confounding drug interactions. Control of pain and other symptomsis discussed in Part II of this guide and the related ethical considerations are addressed in Chapter17: Ethical26Issues.picasEmotional and Interpersonal Quality of LifeSome patients will ask their physicians for help in hastening death. When this occurs, it is imperativefor the physician to understand why such a request is being made and to respond accordingly(Table 23-4). 47 For some patients the desire to hasten death can be reduced by good pain and symptommanagement. Others may need treatment for depression, anxiety or other psychiatric conditions.Interest in quickening death is often a response to factors that are degrading the patient’s quality oflife and can be mitigated. The quality of communication between physician and patient is of paramountimportance. (See Chapter 21: Patient-Clinician Communication and Chapter 22: Facilitatingthe Transition to Home-Based and Hospice Care.)Table 23-4: Reasons Given for Patient Requests for Assistance with Dying1. Future loss of control2. Being a burden3. Being dependent on others for some or all personal care4. Loss of dignity5. Being restricted to bed > 50% of the time6. Experiencing severe depression or depressed mood7. Experiencing severe suffering8. Experiencing severe physical discomfort other than pain9. Experiencing severe pain10. Worries about medical costsSource: Back AL, Wallace JI, Starks HE, Pearlman RA. Physician-assisted suicide and euthanasia in Washington state. JAMA275:919–25, 1996.Ongoing communication between clinician and patient yields benefits beyond mitigating requestsfor assistance with dying. Patients who have regular conversations with their physicians about qualityof life and preferences for care are more likely to complete advance medical directives, and theirphysicians are more likely to know their patients’ relative preferences regarding pain control, symptomrelief, and prolongation of life. 3Table 23-5 offers some examples of questions intended to deepen the dialogue between the patientand his or her health care providers. 48 These questions focus on particular domains in the psychosocialand spiritual arenas.XXIIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 487
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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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IIIChapter 3.Assessment of Physical
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Chapter 6.26 picasPulmonary Symptom
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Chapter 8.26 picasOral ProblemsDavi
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Chapter 9.26 picasDermatologic Prob
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Chapter 10.26 picasPsychiatric Prob
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Chapter 11.26 picas Substance Use P
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Chapter 14.26 picasCulture and Care
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Chapter 15.26 picasSpecial Populati
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Chapter 17.26 picasEthical IssuesLy
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Chapter 18.26 picasLegal and Financ
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Chapter 19.Palliative 26 picas Care
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Chapter 21.26 picas Patient-Clinici
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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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