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

More documents

Recommendations

Info

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 2: Overview of Clinical IssuesTable 2-5:Conditions Suggestive of Less Than Six Months Prognosisin Patients with AIDS26 picasLABORATORY MARKERSCD4 + T-lymphocyte count < 25 cells / mm³HIV RNA > 100,000 copies / mlserum albumin < 2.5 gm / dlCLINICAL CONDITIONSCNS lymphomaPMLcryptosporidiosissevere wastingdisseminated MACvisceral Kaposi’s sarcomaadvanced AIDS dementiatoxoplasmosissevere cardiomyopathychronic severe diarrhealife-threatening malignanciesadvanced end-organ failure (e.g., liver failure, congestive heart failure,COPD, renal failure not on dialysis)Note: All of these factors may potentially be over-ridden in the setting of effective antiretroviral therapy.Source: Adapted from National Hospice Organization. Guidelines for Determining Prognosis forSelected Non-Cancer Diagnoses. Alexandria, VA: National Hospice Organization, 1996.psychosocial as a medical decision, if not more so. These examples underscore the importanceof clarifying the goals of therapy, assessing the potential impact and likely risks and benefits oftherapy, and working collaboratively with patients to determine priorities and treatment plans—all aspects of a good patient-provider relationship that become obscured if too much of the focusis on the treatment instead of on the patient.PSYCHOSOCIAL AND FAMILY ISSUES■ AIDS has always presented unique psychosocial problems for patients, families, and careproviders: a life-threatening illness affecting young adults, often with multiple infected familymembers, raising difficult issues of premature death, unfinished business, legacy, and survivorship.Guilt, shame, anger, and despair may compound the emotional challenges of coming toterms with this progressive, incurable infectious disease. Some of the behaviors linked to HIVinfection remain socially unacceptable in certain contexts, and the association between AIDS,26U.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 Issuespoverty, and racial-ethnic minority populations in the United States further compounds thevulnerability of many patients living with HIV/AIDS. Despite some advances in public educationand awareness about AIDS, there remains a significant degree of stigma, fear, and prejudiceregarding 26 AIDS picas within the society as a whole.In addition to all of the challenges that AIDS has always posed, there are new issues that havearisen in the HAART era that are particularly relevant to palliative and end-of-life care. With thelong awaited impact of HAART—beginning most notably in 1996—and the subsequent rapiddecline in death rates from AIDS, the inevitability of short-term mortality has receded. Thisphenomenon has even resulted in the identification of new potential stressors due to a “ ‘secondlife’ agenda” in patients who must now prepare to go on living instead of preparing to die. 57While the decreased risk of death has clearly been a welcome relief for patients and theircaregivers, it also has had the tendency in some cases to isolate those who are still dying withAIDS in the HAART era, at a time when people’s expectations have been so dramatically liftedby the promise of effective antiretroviral therapy. 17 As noted above, while death rates have decreasedand the rate of decline has slowed, there are still over 15,000 people per year dying fromAIDS in the United States, with the prospect that this number might continue to increase whenthe compounding co-morbidities of hepatitis B and C, substance abuse and its sequelae, cooccurringcancers, and other potentially fatal conditions are taken into account.In the HAART era, the formerly grim scenario of AIDS as a uniformly and rapidly fatal disease isno longer the usual outcome—dying from AIDS has now passed from ‘fate’ to ‘tragedy.’ Althoughin the pre-HAART era death came swiftly to AIDS patients, the new drug therapies are nowcapable of extending life for many years—at least in some patients. Unfortunately, the patientswho do not benefit from the new drugs may be blamed for their ‘failure’ to respond to treatmentor to adhere to the treatment regimen. These dying patients are sometimes ostracized and seenas the ‘anomalies’ who are not able to benefit from the purported lifesaving effects of effectiveantiretroviral therapy. A new form of guilt may be seen in both patients and care providers,faulting poor therapy choices or poor adherence as the ‘cause’ of a patient’s death. With theadvent of HAART, there are both greater possibilities for therapeutic success and greateropportunities for therapeutic failure, regret, and guilt over perceived bad decisions or missedopportunities.Given the importance of adherence to HAART as a major factor in determining the likely successof a treatment regimen, it is not surprising that so much of the routine patient-providerclinical interaction has become focused on adherence to therapy and the close monitoring oflaboratory tests such as CD4+ counts and HIV viral load assays. However, this focus on adherencehas tended to reframe the patient-provider relationship in a new and more limited way,outside of the context of the experience of life-threatening illness and preparation for possibledeath. As with much of medicine in general, the more narrowly one operates within a biomedicalmodel, the less comfortable one tends to be with end-of-life issues, since death in effectrepresents a ‘failure to cure.’ Consciously or not, HIV care providers in the current era may feelinadequate to help patients deal with impending death, since their role is understood as one ofcuring or fighting back the disease. Tragically, providers may feel so out of place that they maywithdraw emotionally from patients and become less involved in their care as they approachdeath, so that patients experience both the losses imposed by the illness and the potential lossof a trusted long-term relationship with their care provider.IIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 27
Page 4 and 5: DedicationA Clinical Guide to Suppo
Page 6 and 7: Lynn A Jansen, RN, PhDAssistant Res
Page 9 and 10: TABLE OF CONTENTSPart IChapter 1Cha
Page 11 and 12: IChapter 1.26 picasHIV and Palliati
Page 13: IA Clinical Guide to Supportive and
Page 16 and 17: A Clinical Guide to Supportive and
Page 47 and 48: IIIChapter 3.Assessment of Physical
Page 87 and 88:
A Clinical Guide to Supportive and
Page 89 and 90:
Page 91 and 92:
Page 93:
Page 96 and 97:
Page 98 and 99:
Page 100 and 101:
Page 102 and 103:
Page 104 and 105:
Page 106 and 107:
Page 108 and 109:
Page 110 and 111:
Page 112 and 113:
Page 114 and 115:
Page 116 and 117:
Page 118 and 119:
Page 120 and 121:
Page 122 and 123:
Page 124 and 125:
Page 126 and 127:
Page 128 and 129:
Page 130 and 131:
Page 132 and 133:
Page 134 and 135:
Page 136 and 137:
Page 138 and 139:
Page 140 and 141:
Page 142 and 143:
Page 145 and 146:
Chapter 6.26 picasPulmonary Symptom
Page 147 and 148:
Page 149 and 150:
Page 151 and 152:
Page 153 and 154:
Page 155 and 156:
Page 157 and 158:
Page 159 and 160:
Page 161 and 162:
Page 163 and 164:
Page 165:
Page 168 and 169:
Page 170 and 171:
Page 172 and 173:
Page 174 and 175:
Page 177 and 178:
Chapter 8.26 picasOral ProblemsDavi
Page 179 and 180:
Page 181 and 182:
Page 183 and 184:
Page 185 and 186:
Page 187 and 188:
Chapter 9.26 picasDermatologic Prob
Page 189 and 190:
Page 191 and 192:
Page 193 and 194:
Page 195 and 196:
Page 197 and 198:
Page 199 and 200:
Page 201 and 202:
Page 203 and 204:
Page 205 and 206:
Page 207 and 208:
Page 209 and 210:
Page 211 and 212:
Page 213 and 214:
Page 215 and 216:
Page 217 and 218:
Chapter 10.26 picasPsychiatric Prob
Page 219 and 220:
Page 221 and 222:
Page 223 and 224:
Page 225 and 226:
Page 227 and 228:
Page 229 and 230:
Page 231 and 232:
Page 233 and 234:
Page 235 and 236:
Page 237 and 238:
Page 239 and 240:
Page 241 and 242:
Page 243 and 244:
Page 245 and 246:
Page 247 and 248:
Page 249 and 250:
Page 251 and 252:
Page 253 and 254:
Page 255 and 256:
Page 257 and 258:
Page 259 and 260:
Page 261 and 262:
Page 263 and 264:
Chapter 11.26 picas Substance Use P
Page 265 and 266:
Page 267 and 268:
Page 269 and 270:
Page 271 and 272:
Page 273 and 274:
Page 275:
Page 278 and 279:
Page 280 and 281:
Page 282 and 283:
Page 284 and 285:
Page 286 and 287:
Page 288 and 289:
Page 290 and 291:
Page 292 and 293:
Page 294 and 295:
Page 296 and 297:
Page 298 and 299:
Page 300 and 301:
Page 302 and 303:
Page 304 and 305:
Page 306 and 307:
Page 308 and 309:
Page 311 and 312:
Chapter 14.26 picasCulture and Care
Page 313 and 314:
Page 315 and 316:
Page 317 and 318:
Page 319 and 320:
Page 321 and 322:
Page 323 and 324:
Page 325 and 326:
Chapter 15.26 picasSpecial Populati
Page 327 and 328:
Page 329 and 330:
Page 331 and 332:
Page 333 and 334:
Page 335 and 336:
Page 337:
Page 340 and 341:
Page 342 and 343:
Page 344 and 345:
Page 346 and 347:
Page 348 and 349:
Page 350 and 351:
Page 352 and 353:
Page 354 and 355:
Page 356 and 357:
Page 359 and 360:
Chapter 17.26 picasEthical IssuesLy
Page 361 and 362:
Page 363 and 364:
Page 365 and 366:
Page 367 and 368:
Page 369 and 370:
Page 371 and 372:
Page 373 and 374:
Page 375 and 376:
Chapter 18.26 picasLegal and Financ
Page 377 and 378:
Page 379 and 380:
Page 381 and 382:
Page 383 and 384:
Page 385 and 386:
Page 387 and 388:
Page 389 and 390:
Page 391 and 392:
Page 393 and 394:
Page 395 and 396:
Page 397 and 398:
Chapter 19.Palliative 26 picas Care
Page 399 and 400:
Page 401 and 402:
Page 403 and 404:
Page 405 and 406:
Page 407 and 408:
Page 409 and 410:
Page 411 and 412:
Page 413 and 414:
Page 415 and 416:
Page 417:
Page 420 and 421:
Page 422 and 423:
Page 424 and 425:
Page 426 and 427:
Page 428 and 429:
Page 430 and 431:
Page 432 and 433:
Page 434 and 435:
Page 436 and 437:
Page 438 and 439:
Page 441 and 442:
Chapter 21.26 picas Patient-Clinici
Page 443 and 444:
Page 445 and 446:
Page 447 and 448:
Page 449 and 450:
Page 451 and 452:
Page 453 and 454:
Page 455:
Page 458 and 459:
Page 460 and 461:
Page 462 and 463:
Page 464 and 465:
Page 466 and 467:
Page 468 and 469:
Page 470 and 471:
Page 472 and 473:
Page 474 and 475:
Page 476 and 477:
Page 478 and 479:
Page 480 and 481:
Page 482 and 483:
Page 484 and 485:
Page 486 and 487:
Page 489 and 490:
Chapter 23.26 picas Medical Care in
Page 491 and 492:
Page 493 and 494:
Page 495 and 496:
Page 497 and 498:
Page 499 and 500:
Page 501:
Page 504 and 505:
Page 506 and 507:
Page 508 and 509:
Page 510 and 511:
Page 512 and 513:
Page 515 and 516:
Chapter 25.26 picas Prevention of S
Page 517 and 518:
Page 519 and 520:
Page 521 and 522:
Page 523 and 524:
Page 525 and 526:
Chapter 26.26 picasResourcesMagda B
Page 527 and 528:
Page 529 and 530:
Page 531 and 532:
Page 533 and 534:
Page 535 and 536:
Page 537 and 538:
Page 539 and 540:
Page 541 and 542:
Page 543 and 544:
Page 545 and 546:
Page 547 and 548:
Page 549 and 550:
Page 551 and 552:
Page 553 and 554:
Page 555 and 556:
Page 557:
Page 560 and 561:
Page 562 and 563:
Page 564 and 565:
Page 566 and 567:
Page 568 and 569:
Page 570 and 571:
Page 572 and 573:
Page 574 and 575:
Page 576 and 577:
Page 578 and 579:
Page 580 and 581:
Page 582 and 583:
Page 584 and 585:
Page 586 and 587:
Page 588 and 589:
Page 590 and 591:
Page 592 and 593:
Page 594 and 595:
Page 596 and 597:
Page 598 and 599:
Page 600 and 601:
Page 602 and 603:
Page 604 and 605:
Page 606 and 607:
DRUGS AND THERAPIES INDEXNOTES: Ent
Page 608 and 609:
Page 610 and 611:
Page 612:
show all

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

Create successful ePaper yourself

Delete template?

Save as template?