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 AdolescentsCommunication among care providers must be accurate, timely, and respectful of the interdisciplinarynature of the care we provide. Challenges to effective interprofessional communicationcan include the following:26 picas• Different care venues• Different work schedules• Different views of a patient’s health status• Different views of the options for treatment and care• Different levels of skill in communication• A lack of unified or continuous information systemsThe benefits of effective team communication among providers include the following:• Greater efficiency• Greater satisfaction• Reduced errors• More complete assessment of the patient• More coordinated treatment• Improved discharge planningImportant communication occurs within family units. In optimal situations, these roles andrelationships among family members are clear and supportive of providing the best care for thechild patient. Unfortunately, there are families in which relationships are rancorous, sometimeserupting into arguments at the child’s bedside. In other families, the breadth and depth offamily communication and involvement may be almost invisible to the care team. Asking openlyabout a family’s communication, and supporting ongoing communication within families, willfacilitate the best assessment and plan for care for all concerned.Communication with the child patient is discussed earlier in this chapter but needs reiteration.The child is the patient and deserves to be the center of attention. Asking questions, sharinginformation, and supporting the child’s inclusion and involvement in decisionmaking can andshould be tailored to the child’s developmental and physical capacity as discussed above. Communicationbetween the health care team and the child-family team then has the best chancefor success.Impact on Pediatric Health Care ProvidersThis chapter is not complete without acknowledging the deep commitment of pediatric healthcare professionals to promoting the best care for children and adolescents infected and affectedby HIV/AIDS. This work is as deeply rewarding as it is remarkably difficult. If we are to providethe best palliative and end of life care, we must know and understand the paradoxical world inwhich we work.Death remains the exception in the practice of pediatrics. Just as it is unnatural for children topredecease their patients, so it is unnatural for our child patients to die. Although efforts arenow increasing, providers receive little training in how to care for children and families who aredying. This often leaves us feeling incompetent to provide the expert care we know our patientsdeserve.286U.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 12: The Care of Children and AdolescentsHAART has complicated this emotional dynamic enormously. We have seen dramatic clinicalimprovements in children with end stage disease who begin HAART therapy. We also see childrenand families who simply cannot successfully adhere to these complicated regimens. Howfar should26wepicasgo to assure that young patients have had the best available treatment to keepthem healthy? Do we recommend, or insist on, the placement of gastrostomy tubes for medicationadministration? Do we recommend, or insist on, a child being removed from a mother’s carebecause her failure to assure medication adherence is medical neglect? How do our answerschange depending on where the child is on his or her disease and treatment trajectory? When isenough enough, despite sub-optimal social circumstances? How can we as health care providersfeel we have “done everything” we should to control our patient’s HIV, and still have the time andwherewithal to provide palliative and end-of-life care? We must continue to engage in this struggleto define a path to walk with our patients and their families.REFERENCES1. World Health Organization. Cancer Pain and Palliative Care in Children. Geneva: World HealthOrganization, 1998.2. Bartlett JG, Gallant JE. 2000-2001 Medical Management of HIV Infection. Baltimore: Johns HopkinsUniversity, Division of Infectious Diseases, 2000.XIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 287
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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 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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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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