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 12: The Care of Children and Adolescents26 picasSUGGESTED READINGArmstrong-Dailey A, Goltzer SZ, eds. Hospice Care for Children. New York: Oxford University Press, 1993.Christ GH. Healing Children’s Grief. New York: Oxford University Press, 2000.Goldman A, ed. Care of the Dying Child. Oxford: Oxford University Press, 1994.McCue K, Bonn R. How to Help Children Through a Parent’s Serious Illness. New York: St. Martin’s Press, 1994.Milch RA, Freeman A, Clark E. Palliative Pain and Symptom Management for Children and Adolescents.Alexandria: Children’s Hospice International, 1985.Siberry GK, Iannone R, eds. The Harriet Lane Handbook, 15 th ed. St. Louis: Mosby, 2000.Yaster M, Krane EJ, Kaplan RF, Cote CJ, Lappe DG, eds. Pediatric Pain Management and Sedation Handbook.St. Louis: Mosby-Year Book, 1997.World Health Organization. Cancer Pain and Palliative Care in Children. Geneva: World Health Organization,1998.288U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau
Chapter 13.26 picasSpiritual CareChristina M Puchalski, MD, and Rev. Carlos Sandoval, MDINTRODUCTION■ Illness is a major life event that can cause people to question themselves, their purpose, andtheir meaning in life. It disrupts their careers, their family life, and their ability to enjoy themselves;three aspects of life that Freud said were essential to a healthy mind. Illness can causepeople to suffer deeply. Victor Frankl noted when writing about concentration camp victimsthat survival itself might depend on seeking and finding meaning:Man is not destroyed by suffering; he is destroyedby suffering without meaning. 1Palliative care has long recognized that, in addition to physical and psychological symptoms,patients with advanced illness will suffer existential distress as well. Existential distress is probablythe least understood source of suffering in patients with advanced disease, for it deals withquestions regarding the meaning of life, the fear of death, and the realization that they will beseparated from their loved ones. 2 These issues take on greater importance in HIV/AIDS becauseof the stigma and judgment that still accompany people living with this disease.XIIIIn our own clinical experience, we have found that people cope with their suffering by findingmeaning in it. Spirituality plays a critical role, because the relationship with a transcendent beingor concept can give meaning and purpose to people’s lives, to their joys and to their sufferings.A number of surveys and studies demonstrate the importance of considering spirituality in thehealth care of patients and document the relationship between patients’ religious and spirituallives and their experiences of illness and disease. 3, 4 These findings are particularly relevant inthe delivery of palliative care. 5, 6 From the very early years of the modern hospice movement,spiritual aspects of health, illness, and suffering have been emphasized as core aspects of care.Several studies support the relevance of spirituality in the care of seriously ill patients.A 1997 Gallup survey showed that people overwhelmingly want their spiritual needs addressedwhen they are close to death. In its preface, George H. Gallup, Jr., wrote, “The overarchingmessage that emerges from this study is that the American people want to reclaim and reassertthe spiritual dimensions in dying.” 7 Other studies have found spirituality to be an importantfactor in coping with pain, in dying, and in bereavement. 8, 9 Patients with advanced cancer whofound comfort from their spiritual beliefs were, for example, more satisfied with their lives, werehappier, and had diminished pain compared with those without spiritual beliefs. 10 An AmericanPain Society survey found that prayer was the second most common method of pain managementafter oral pain medications, and the most common non-drug method of pain management. 11U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 289
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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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Page 247 and 248: A Clinical Guide to Supportive and
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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 23.26 picas Medical Care in
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Chapter 25.26 picas Prevention of S
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Chapter 26.26 picasResourcesMagda B
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DRUGS AND THERAPIES INDEXNOTES: Ent
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