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 Adolescentsto provide the best life possible for the child in their care. We do not and should not “give up” onchildren. But we must keep in mind that regardless of our interventions, HIV is ultimately fatal.When life-sustaining therapies become death-prolonging, we can support families in deciding toforgo26or withdrawpicassuch therapies, knowing such decisions are a means toward their goal ofproviding the best quality of life possible for their child.Providing Care: Who and Where?Most care for children and adolescents occurs in the home. Home is a familiar place of comfortwhere family members come together to love and care for the child. Current practices inpediatric home care and hospice care are based on this foundation. Home care professionalsprovide in-home assessment and training, permitting parents and other caregiving adults toprovide even highly technical and specialized care outside the hospital setting.Accessing home care or hospice services is sometimes difficult depending on the child’s healthinsurance and health status. Many insurance plans require patients to be “homebound” to receivehome care services. Yet the health care provider’s goal of keeping children active and functioningin a developmentally appropriate way may clash with traditional definitions of “homebound.”Advocating that services should be rendered and reimbursed based on need and least restrictivesetting is consistent with pediatric principles of care.Unfortunately the AIDS epidemic has disproportionately hit vulnerable families who may notmeet this pediatric ideal. Some children live with parents who also have progressive HIV disease,with resulting weakness, confusion, repeated hospitalizations, and early death. There maybe serial caregivers both short and long term, causing discontinuity in the child’s basic care andmedical care. Some children live in substandard housing, some without utilities. However, noneof these conditions is a contraindication to home care if there are caring adults willing andavailable to provide care for the child. Palliative care is generally “low tech” and depends moreon “high touch.” As long as the child is warm, dry, safe, and comfortable, the other aspects ofcare can be addressed.In situations where there is no reliable adult and no safe place to live, we need to look to residentialand inpatient alternatives. These are in particularly short supply for children. There arealmost no pediatric hospices in the United States. Adult hospices are not prepared to acceptpediatric inpatients.Home hospice services vary in their capacity and readiness to provide child-centered services.At a minimum, they need pediatric training and backup to provide pediatric home hospice care.We should look for opportunities for partnership between community-based hospice servicesand children’s hospitals or other pediatric specialty and tertiary care facilities to build the capacityto care for these children and adolescents.Health Care DecisionsCollaboration with the FamilyMaking good decisions depends on the collaboration of the patient, family, and health careproviders. Each person brings unique information and perspective to the choices posed at pointsalong the disease trajectory. Identifying these key individuals and preparing them to participateeffectively is a critical component of palliative care.280U.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 AdolescentsHealth care providers are responsible for gathering relevant information about the patient’sclinical status and possible treatment and management options. Providers should be able topresent all of the different options that exist and to articulate the following aspects of eachoption:26 picas• What the patient will have to do• Implications for the patient’s daily routine and level of comfort• Any restriction of activities• The “downside” of each option such as side effects, need for procedures orhospitalization• The alternatives, including “doing nothing”One way to think about this process is to imagine standing at a fork in the road and consideringwhich pathway to take. What is the destination? Do all paths lead to the same or different destinations?What good or bad things might be encountered along the way? Will the path be smoothand flat or steep and rocky? What if there is an unanticipated problem, e.g., a landslide blocksthe way, you get a flat tire, the weather turns cold and wet? Can you turn back? Or is there apoint of no return? What is unknown?Providers must have specific knowledge of treatments for specific problems and be able to answerquestions including the following:• Which medicines can be used to treat this problem?• What are the dose, route and schedule?• What are the side effects and interactions?• Can this problem be treated at home? As an outpatient? As an inpatient?• How long will the treatment last?• How likely is it to work?• How will you know if it worked?• Will the problem recur?• What will happen if no medicine is given?These are considerations for each treatment we offer throughout the course of a patient’s disease.Practicing conscious consideration of all the relevant issues from the time of diagnosislays a strong foundation for open consideration of all issues at advanced stages of disease. Whichchoices are made may change over time as the patient’s disease progresses. (See Table 12-7:Health Care Decisionmaking: Case Example.)It is critical for the treatment team to discuss all the options and come to consensus prior topresenting information to a patient and family. Hearing conflicting and fragmented informationcauses distress and confusion for patients and families. As HIV disease progresses, it involvesmore body systems and therefore more specialists. The burden for organizing the input of multiplespecialists and making coherent recommendations falls to the primary health care provider.This burden should not be shouldered by the patient and family.The process of decisionmaking is collaborative. Health care providers need to grapple with whichoption they think is the best for this particular patient at this particular time, recognizing thatsome patients and families will disagree and choose another option, and some families will lookXIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 281
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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 19.Palliative 26 picas Care
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Chapter 26.26 picasResourcesMagda B
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DRUGS AND THERAPIES INDEXNOTES: Ent
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