Humans; Palliative Care; Terminal Care; Pediatrics; Parents; Communication; Nervous System Diseases; Risk Assessment; Hope; Stress; quality of life; Psychological; advance care planning; neurologic; Metabolic Diseases; Metabolic Diseases
Description
PURPOSE OF REVIEW: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases. RECENT FINDINGS: There is a growing body of literature in PPC, though it remains limited for children with metabolic and neurological diseases. Evidence indicates the benefit of PPC. Utilization of PPC programmes can facilitate communication, ensure that families are better informed, improve certainty with decisions, enhance positive emotions, result in fewer invasive interventions at the end of life, and have an impact on location of death. Barriers to utilization of PPC include concern about taking away hope and uncertainty about prognosis. Challenging areas for children with metabolic and neurological diseases include the identification of distressing symptoms and prognostic uncertainty. This article aims to review literature relevant to this group of children, as well as provide a framework when considering specific palliative care needs. SUMMARY: PPC for children with metabolic and neurological diseases can lessen a child's physical discomfort and enhance parental certainty with decision-making. These areas along with other needs throughout the illness trajectory and bereavement are being increasingly met by the growing availability of PPC programmes.
2014-09
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).Copyright 2010 Mosby, Inc. All rights reserved.
2010
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Child; Female; Humans; Male; Cohort Studies; Risk Factors; adolescent; Preschool; Q3 Literature Search; retrospective studies; Recurrence; Developmental Disabilities/complications/physiopathology; Body Temperature Regulation; Hypothermia/complications/prevention & control/psychology; Pancreatitis/diagnosis/etiology/therapy
Description
Children with severe neurodevelopmental impairment are at risk for recurrent hypothermia, defined as a temperature of less than 35 degrees C, as a result of hypothalamic dysfunction. Acute pancreatitis following hypothermia from environmental exposure or induced as medical therapy has been reported in adults. In this case series of 10 children (six males, four females) with severe neurodevelopmental impairment and associated hypothermia, five had an episode of acute pancreatitis. These five patients had documented hypothermia, an elevated lipase of greater than 1000U/L, and presenting symptoms of irritability or lethargy along with gastrointestinal symptoms such as feeding intolerance. Four of these five children had no other explanation for pancreatitis; the fifth had multiple gallstones. This case series identifies the risk of acute pancreatitis in children with central hypothermia. Monitoring for resolution upon establishment of euthermia can minimize unnecessary testing and cost.
2008
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Neurologically impaired children have an increased frequency of recurrent pain and irritability that persist in some despite comprehensive evaluation and management of possible pain sources. We hypothesized that visceral hyperalgesia was a source of chronic unexplained irritability and report the outcome of gabapentin treatment in 9 severely neurologically impaired children. Caregivers reported marked improvement after treatment ranging from 3 months to 3 years. Nystagmus in 1 child was the only noted adverse effect. Visceral hyperalgesia may be a source of unexplained irritability in the neurologically impaired child. Symptoms may improve with gabapentin treatment.
2007-02
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Description
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).