Pediatric Oncology Palliative and

End-of-Life Care Resource

Angela M. Ethier, PhD RN FTJudy Rollins, PhD RN

Janet Stewart, PhD RNEDiToRS

APHON09 PC Guide.indd 1 6/10/10 2:29:52 PM

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i Pediatric Oncology Palliative and End-of-Life Care Resource

Pediatric Oncology Palliative and End-of-Life Care ResourceEditORsAngela M. Ethier, PhD RN FTHouston, TX

Judy Rollins, PhD RNPresident, Rollins & AssociatesAdjunct Assistant Professor, Departments of Family Medicine & PediatricsGeorgetown University School of MedicineWashington, DC

Janet Stewart, PhD RNAssistant ProfessorUniversity of Pittsburgh School of NursingPittsburgh, PA

Copyright © 2010 CureSearch Children’s Oncology Group & Association of Pediatric Hematology/Oncology Nurses4700 W. Lake AvenueGlenview, IL 60025-1485All rights reserved worldwide.

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ii Pediatric Oncology Palliative and End-of-Life Care Resource

Copyright © 2010 CureSearch Children’s Oncology Group and Association of Pediatric Hematology/Oncology NursesAll rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission.

Printed in the United States of America.

Association of Pediatric Hematology/Oncology Nurses4700 W. Lake AvenueGlenview, IL 60025-1485

Library of Congress Control Number 2010920529ISBN 978-0-9666193-2-4

Note. This Pediatric Oncology Palliative and End-of-Life Care Resource, hereinafter “Document” is not designed to and does not provide medical advice. The Document provides general information only. The information provided in the Document is not a substitute for medical or professional care. The Children’s Oncology Group (COG) is a National Cancer Institute (NCI) established cooperative group that conducts multicenter cooperative group research in the field of pediatric cancer. Neither COG nor the National Childhood Cancer Foundation (NCCF) is a hospital, academic medical center, or other healthcare provider. Neither the COG, the NCCF, nor the Association of Pediatric Hematology/Oncology Nurses (APHON) assumes any liability to any person or entity for use of this information and such persons and entities hereby agree to hold harmless and indemnify COG, NCCF, and/or APHON for any liability or obligation to third parties that may result from such use. Furthermore, no representation or warranty is made herein about the accuracy, reliability, completeness, relevance, or timeliness of the information provided in the Document and the COG, APHON, and NCCF and all authors and contributors to Document expressly disclaim any such representation or warranty to such effect. Each user is responsible for ensuring his, her, or its own compliance with applicable law, regulation, ethical (e.g., insitutional review board) review, and approval requirement and governmental policy.

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v Pediatric Oncology Palliative and End-of-Life Care Resource

Pediatric Oncology Palliative and End-of-Life Care ResourceContents

Preface. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vi

introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vii

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . viii

section 1 Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1Entry Into the Palliative Care System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Financial Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

section 2 Pain Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7

section 3 Management of Physical symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13Cardiovascular Symptom Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Overview of Arrhythmias. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Palpitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Sinus Bradycardia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16Supraventricular Tachycardia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17Superior Vena Cava Syndrome. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

Gastrointestinal Symptom Management. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20Anorexia and Cachexia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20Constipation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Dehydration. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22Diarrhea . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23Hiccups (Singulatus). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25Nausea and Vomiting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Hematologic Symptom Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28Anemia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28Bleeding and Hemorrhage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Integumentary Symptom Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33Diaper Dermatitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33Dry Skin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34Pressure Ulcers (Decubiti) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36Pruritis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38Treatment-Related Skin Irritation and Breakdown. . . . . . . . . . . . . . . . . 40Tumor Necrosis and Fistula . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

Neurological Symptom Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42Agitation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42Delerium and Acute Confusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43Dysphagia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45Fatigue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46Fever . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48Increased Intracranial Pressure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49Insomnia and Sleep Disturbance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50

Myoclonus and Tremors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51Seizures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52Spinal Cord Compression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54Weakness and Impaired Mobility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Pulmonary Symptom Management. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56Agonal Respirations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56Cough. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57Dyspnea . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58Pulmonary Edema. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60Secretions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61Wheezing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Renal and Metabolic Symptom Management . . . . . . . . . . . . . . . . . . . . . . . . 63Decreased Urine Output (Oliguria) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63Urinary Frequency and Incontinence . . . . . . . . . . . . . . . . . . . . . . . . . . . 64Hematuria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65Hypercalcemia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66Syndrome of Inappropriate Antidiuretic Hormone . . . . . . . . . . . . . . . . 67Urinary Retention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

section 4 Complementary and Alternative therapies . . . . . . . . . . . . . . . . . . . . . . 71

section 5 Management of Psychosocial issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . .77Anxiety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79Children, Death, Grieving, and Mourning . . . . . . . . . . . . . . . . . . . . . . . . . . . 85Communication Challenges . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89Cultural Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92Spiritual Distress . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104Medical Decision Making When the Child Is a Minor,

Emancipated Minor, or Young Adult. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107Parental Coping . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113Parental Grief and Mourning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117

section 6 Professional Caregiver issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .121Therapeutic Relationships and Professional Boundaries . . . . . . . . . . . . . . 123Professional Grief and Mourning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

section 7 Care as death Nears . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .129Nearing Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131Care Following the Child’s Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133Funeral Arrangements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 134

index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .135

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introduction

This Resource is organized by sections representing critical aspects of pediatric oncology end-of-life and palliative care. For specific symptoms or issues within each section, the following elements are presented:• Definition(s)—meaningofessentialterms• Causesand/orinfluencingfactors—underlyingetiologies;factorsaffectingpresentation,severity,outcomeofsymptomorissue• Overviewofcare—context,goals,andrationaleforrecommendations• Recommendations—assessment,interventions,and/ormanagement,includingspecialconsiderations• References—citedworks• Supportingmaterials—tables,figures,orexhibits.

Individual symptoms and issues are listed alphabetically in the index. It is important to consider that most symptoms or issues rarely occur in isolation.1-4

Palliative care begins at the time of cancer diagnosis and continues throughout the illness trajectory. When children are not expected to survive their disease, palliative care continues through the dying process and the bereavement period. The Resource is not intended to replace the recommendations of the treating physician, but is intended to serve as an adjuvant resource.

References 1. Gift AG. Symptom clusters related to specific cancers. Sem Onc Nurs. 2007;23:136-141. 2. Given BA, Given CW, Sikorskii A, Hadar N. Symptom cluster and physical function for patients receiving chemotherapy. Sem Onc Nurs. 2007;23:121-126. 3. Hockenberry MA, Hooke MC. Symptom clusters in children with cancer. Sem Onc Nurs. 2007;23:152-157. 4. Honea N, Brant J, Breck SL. Treatment-related symptom clusters. Sem Onc Nurs. 2007;23:142-151.

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section 1Palliative Care

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1.1 Entry into the Palliative Care system Deborah A. Lafond, MS PNP-BC CPON ®

3 section 1.1: Entry Into the Palliative Care System • Pediatric Oncology Palliative and End-of-Life Care Resource

dEFiNitiONPalliative care for children is the active, total care of the child’s body, mind, and spirit and extends to providing support to the family. It begins when illness is diagnosed and continues as long as the child is receiving care, regardless of whether treatment is directed at the disease, and, for the family, through bereavement if the child dies.1

CAusEs ANd iNFLuENCiNG FACtORsChildren with life-threatening illnesses, such as cancer, face an unpredictable course characterized by periods of stability marked by intervals of serious illness, which ultimately may lead to death.2 Palliative care should be integrated early during the course of care for those patients with serious, life-threatening illnesses with unpredictable courses as well as those who have predictable trajectories of progression, such as (a) diagnosis of hematologic or oncologic disease3; (b)evidenceofadvancedorprogressivedisease;(c) high-risk disease with poor prognosis for cure; (d) event-free survival (EFS) ≤50%

(e.g.,brainstemglioma,stageIVneuroblastoma,acutemyelogenousleukemia);and(e)serious, complex, comorbid disease with poor prognosis for adequate symptom control.4 Insufficient reimbursement for coordinating pediatric palliative services is a significant obstacle to effective interdisciplinary care, although professional and legislative attempts to address such barriers are ongoing.3,5-7

OVERViEW OF CAREPalliative care represents holistic, child-, and family-centered care, provided by an interdisciplinary team in the hospital, outpatient, or home settings, which aims to enhance quality of life by addressing the physical, psychosocial, and spiritual consequences of illness and treatment. The goals of care change as the child's and family’s needs change. Ideally, palliative care begins at diagnosis with a life-threatening illness and continues through and after death with the provision of bereavement care to surviving family members.

Assessment interventions and ManagementAssess for the following:

Child’s and family’s readiness to learn •Child’s and family’s understanding of •child’s illness and prognosisChild’s and family’s goals and expectations •Family’s ability to provide care, including •use and operation of any requiredequipmentCultural and spiritual beliefs and needs •related to illness, dying, and deathOnset, duration, and severity of pain and •other symptoms.

Consider the following, based on child’s status:

Laboratory and radiological tests specific •for diagnosis and symptoms, only if courseof care will be altered by results.

NonmedicalIntroduce the simultaneous provision of cure-directed treatment and palliative care as close to the time of diagnosis as possible. Discuss roles •of primary treatment team, palliative care, home care, and hospice providers and provide contact information as appropriate.Discuss the principles of palliative care as indicated. •Present all available treatment and palliative goals and options. •Discuss likely effects of disease and various treatments, including hospitalization, clinic visits, invasive procedures, and physical and emotional •effects.Clarify misconceptions (e.g., related to illness, treatment, prognosis). •Determine child and family’s preferred decision-making style. (See Section 5.7: Medical Decision Making When the Child Is a Minor, •Emancipated Minor, or Young Adult, p. 107.)Clarify child and family’s goals and reassess on an ongoing basis. •Provide written materials and facilitate child and family’s demonstration of skills as indicated (e.g., symptom management, medication •administration, equipment management).At the time of entry into palliative care (or may be deferred to a later point in the illness trajectory as determined by the needs of child and •family), refer to (if not already established as team members):

Spiritual care providers -Child life department -Social worker -Psychologist -Pain team and hospice and palliative care team (if available). -

Provideanticipatoryguidanceasdiseaseprogresses(e.g.,signsandsymptomsofdiseaseprogressionanddyingprocess;SeeSection7.1: •Nearing Death, p. 131.)

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My Wishes, a booklet to help children communicate with their family and healthcare providers (HCPs) about how they wish to be cared for should they become seriously ill, www.agingwithdignity.org/mywishes.html

Five Wishes, a booklet to help adolescents and young adults communicate with their family and HCPs about how they wish to be cared for should they become seriously ill, in English, http://agingwithdignity.org/5wishes.pdf (also available in Spanish)

American Academy of Pediatrics Statement on Palliative Care, http://aappolicy.aappublications.org/cgi/reprint/pediatrics;106/2/351.pdfAmerican Medical Association Statement on End-of-Life Care, www.ama-assn.org/ama/pub/category/7567.htmlANA Code of Ethics for Nurses With Interpretive Statements, http://nursingworld.org/ethics/code/protected_nwcoe813.htmChildren’s Hospice International, Program for All-inclusive Care for Children and Their Families, www.chionline.orgNational Hospice and Palliative Care Organization, www.nhpco.orgGrowth House, Inc., resources for helping children cope with death and grief, www.growthhouse.org/childgrv.html

References1. World Health Organization (WHO). WHO definition of palliative care. 2009 WHO Web site. www.who.int/cancer/palliative/definition/en. Accessed August 24, 2008.2. Mack JW, Hilden JM, Watterson J, et al. Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol.2005;23:9155-9161.3. Field MJ, Behrman RE. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families.Washington,DC:NationalAcademiesPress;2003.4. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330:1007-1011.5. Hilden JM, Emanuel EJ, Fairclough DL, et al. Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol.

2001;19:205-212.6. American Academy of Pediatrics. Palliative care for children. Pediatrics.2000;106:351-357.7. Dabbs D, Butterworth L, Hall E. Tender mercies: increasing access to hospice services for children with life-threatening conditions. Am J Matern Child Nurs.2007;32:311-319.8. Lee DP, Skolnik JM, Adamson PC. Pediatric phase I trials in oncology: an analysis of study conduct efficiency. J Clin Oncol. 2005;23:8431-8441.9. Ulrich CM, Grady C, Wendler D. Palliative care: a supportive adjunct to pediatric phase I clinical trials for anticancer agents? Pediatrics. 2004;114:852-855.

10. Shah S, Weitman S, Langevin AM, Bernstein M, Furman W, Pratt C. Phase I therapy trials in children with cancer. J Pediatr Hematol Oncol. 1998;20:431-438.

Assessment interventions and ManagementConduct Advanced Care Planning (ACP) with interdisciplinary team. (See Section 5.7: Medical Decision Making When the Child Is a Minor, •Emancipated Minor, or Young Adult, p. 107.)Notify primary team members, including primary care provider if not part of ACP team, of the child and family’s goals of care and the tenets •of the advanced-care plan.Discuss impact on family (e.g., parental and sibling stress, financial concerns). •Reassure child and family that primary treatment team members will continue to be involved in care during end-stage disease or provide •referral to hospice services as appropriate.Provide psychosocial and spiritual support as indicated. (See Section 5.4: Cultural Considerations, p. 92, and Section 5.5: Spiritual Distress, p. •97.)Facilitate opportunities to promote positive communication among child, family, and providers • . (See Section 5.3: CommunicationChallenges, p. 89.)Refer to bereavement specialist for funeral and bereavement support when it is clear the child will not survive his or her disease or earlier in •the trajectory of illness to assist other family members with anticipatory grief.

MedicalProvide pharmacologic and nonpharmacologic interventions for pain and symptom management. (See Section 2: Pain Management, p. 7.) •Provide palliative anticancer therapies as appropriate. •

special Considerations. Itisparticularlycriticaltocoordinatethesimultaneousprovisionofcure-directedandpalliativecareinchildrenatlowestlikelihoodofcure(e.g.,thosewithEFS<50%[seeabove])andparticularly those enrolled in Phase I clinical trials who generally experience a very low response rate.8-10 (See Box 1.1.1.)

Box 1.1.1. Precepts of Palliative Care for Children and Adolescents

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5 section 1.2: Financial Resources • Pediatric Oncology Palliative and End-of-Life Care Resource

dEFiNitiONFinancial resources are any available source of wealth or reserve that can be drawn upon whenneededandmayincludewages;personalcheckingandsavings;trusts;stocks;bonds;third-party reimbursement benefits, including private insurance, Medicare, Medicaid, and SocialSecurity;aswellascharitableorganizationsandagencieswhosemissionincludeshelping families of ill children.

CAusEs ANd iNFLuENCiNG FACtORsThefactorsthatmayinfluencethefinancialresourcesofafamilyrequiringpalliativecareinclude(a)medicalbenefits(andout-of-pocketexpenses);(b)proximityofcaretohome(e.g.,transportation,lodgingcosts);(c)socioeconomicstatus;(d)hospitalpolicies(e.g.,freeordiscountedmeals,parkingforparents);(e)employmentstatus(e.g.,abilitytoworkortimeoffrelatedtocareforthechild);(f)eligibilityforassistanceprograms;and(g)community support (e.g., faith community, fundraising).1 The child and family requiring

palliative care may experience changes in lifestyle that affect their financial resources. Time needed to care for the child may affect employment status, which in turn, may affect benefits and available cash reserves.

OVERViEW OF CAREThe financial costs of pediatric palliative care, as well as fears regarding financial security, can place additional burdens on families.2 Unlike adults, children often receive therapies such as blood transfusions, nutrition, and chemotherapy near the time of death. These therapiesprovideincreasedqualityoflifeforpediatricpatients;however,theydonotfitwithin the current reimbursement structures, and, therefore, insufficient reimbursement can become a significant obstacle to effective interdisciplinary care.3,4 Palliative care and hospice services are underdeveloped for children when compared to adult services and may be fragmented among many providers.3-6 Coordination of care and referral to resources should begin early in the treatment plan to help minimize financial stressors.

1.2 Financial Resources Deborah Echtenkamp, MSN RN CPON®

Assessment interventions and ManagementAssess for the following:

Ability of primary •family wage-earner(s)to continue paidemploymentAdequacy of medical •benefits (e.g., insurance,government programs,charitable organizations)Availability of respite •benefitsOther sources of income •or assistance.

Assist parents in identifying financial resources for palliative care servicesPrivatemedicalinsurance;identifyacontactattheinsurancecompanyandprovideassistancetoparent(s)inclarifyingbenefitsandnegotiatingservices. -Employeebenefitprograms(e.g.,employeehelpfunds,leaveshare)andfinancialassistanceprograms;manyemployershaveprogramswhereemployees -can donate paid time off.Sourcesofpersonalfunding(e.g.,useofsavings,IndividualRetirementAccount);evaluatefeasibilityofusingtheseresourcesversusthepotentialrisks. -Fundraising opportunities and availability of assistance from family’s place of worship as indicated. -Payment plans to individual care providers to meet deductibles and/or care not covered. -

Recommend that parents maintain a log or folder of all medical (e.g., prescriptions, hospital stays) and nonmedical (e.g., parking, meals, travel) expenses •related to treatment for tax preparation.Facilitate family members’ contact with potential sources of information and financial support, including •

institution-based and/or insurance company case manager -hospital/clinic financial counselor -financial planner -insurance assistance programs -governmental assistance programs (e.g., State Children’s Health Insurance Program, Consolidated Omnibus Budget Reconciliation Act, Americans with -Disabilities Act, Family Medical Leave Act, Medicaid, Supplemental Security Income)illness-specific organizations (e.g., American Cancer Society) -regional charitable organizations (e.g., American Legion) -medication assistance programs (e.g., www.needymeds.com, www.pparx.org, individual pharmaceutical company programs) -

Discuss plan for funeral expenses and facilitate discussion with funeral director when it is clear the child is not going to survive his or her disease and based on •the readiness of the family. (See section 7.3: Funeral Arrangements, p. 134.)

special Considerations. Foracomprehensivedatabaseofregionalandnationalfinancialresources,seethefollowingWebsites:CureSearch,www.curesearch.org/resources/resourceservice.aspx?ServiceId=1;Children’s Hospice and Palliative Care Coalition, www.childrenshospice.org/benefit/links-to-resources.

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References1. TexasChildren’sCancerCenter.Needsoffamilycaregivers.End-of-LifeCareforChildrenWebsite.www.childendoflifecare.org/frame_dyn.html?family/family10.html.AccessedApril2,2008.2. Dockerty JD, Skegg DC, Williams SM. Economic effects of childhood cancer on families. J Pediatr Child Health. 2003;39:254-258.3. Frader J, Morgan E, Levinson T, et al. Barriers, education, and advocacy in palliative care. In: Carter BS, Levetown M, eds. Palliative Care for Infants, Children, and Adolescents. A Practical Handbook. Baltimore, MD:

TheJohnsHopkinsUniversityPress;2004:44-66.4. Hilden JM, Friebert S, Himelstein B, et al. Children and adolescents with cancer. In: Carter BS, Levetown M, eds. Palliative Care for Infants, Children, and Adolescents. A Practical Handbook. Baltimore, MD: The Johns

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