Palliative care for infants, children, adolescents, and their families

Journal of Palliative Medicine

Volumn 9, Issue 1, 2006, Pages 163-181

  Himelstein, Bruce P ^a  

^a Medical College of Wisconsin ^*  (United States)

Author keywords

[No Author keywords available]

Indexed keywords

AMITRIPTYLINE; CARBAMAZEPINE; CHOLINE MAGNESIUM TRISALICYLATE; CLONAZEPAM; CODEINE; DEXAMETHASONE; DEXAMPHETAMINE; DIAZEPAM; DROPERIDOL; FENTANYL; FLUOXETINE; GABAPENTIN; HALOPERIDOL; HYDROMORPHONE; IBUPROFEN; KETOROLAC; LORAZEPAM; METHADONE; METHYLPHENIDATE; MIDAZOLAM; MORPHINE; NAPROXEN; NORTRIPTYLINE; OXYCODONE; PARACETAMOL; PAROXETINE; PHENOTHIAZINE DERIVATIVE; TRAMADOL; UNINDEXED DRUG; VALPROIC ACID;

ADOLESCENT; ANXIETY DISORDER; BEREAVEMENT; BONE PAIN; CHILD; CHILD CARE; COMMUNICATION SKILL; DEPRESSION; FAMILY; GRIEF; HUMAN; INFANT; MUSCLE SPASM; NEUROPATHIC PAIN; PALLIATIVE THERAPY; PROGNOSIS; REVIEW; SLEEP DISORDER; SPIRITUAL CARE; TREATMENT PLANNING;

ADOLESCENT; CHILD; CHILD, PRESCHOOL; DECISION MAKING; ETHICS, MEDICAL; HEALTH SERVICES ACCESSIBILITY; HUMANS; INFANT; INFANT, NEWBORN; PALLIATIVE CARE; PEDIATRICS; PROFESSIONAL-FAMILY RELATIONS; PROFESSIONAL-PATIENT RELATIONS;

EID: 32044444109     PISSN: 10966218     EISSN: None     Source Type: Journal    
DOI: 10.1089/jpm.2006.9.163     Document Type: Review

References (91)

1. Himelstein BP, Hilden JM, Boldt AM, Weissman D: Pediatric palliative care. [see comment]. N Engl J Med 2004;350:1752-1762.
2. Kane J, Himelstein B. Palliative Care in Pediatrics. In: Berger A, Portenoy RK, Weissman DE (eds): Principles and Practice of Palliative Care & Supportive Oncology. Philadelphia: Lippincott Williams & Wilkins, 2002. pp. 1044-1061.
3. Arias E, MacDorman MF, Strobino DM, Guyer B: Annual summary of vital statistics-2002. Pediatrics 2003;112(6 Pt 1):1215-1230.
4. Goldman A: Care of the Dying Child. Oxford: Oxford University Press, 1999.
5. Feudtner C, Christakis DA, Connell FA: Pediatric deaths attributable to complex chronic conditions: A population-based study of Washington State, 1980-1997. Pediatrics 2000;106(1 Pt 2):205-209.
6. Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD: Deaths attributed to pediatric complex chronic conditions: National trends and implications for supportive care services. Pediatrics 2001;107:E99.
7. Craig F, Goldman A: Home management of the dying NICU patient. Semin Neonatol 2003;8:177-183.
8. Collins JJ, Stevens MM, Cousens P: Home care for the dying child. A parent's perception. Aust Fam Physician 1998;27:610-614.
9. Kopecky EA, Jacobson S, Joshi P, Martin M, Koren G: Review of a home-based palliative care program for children with malignant and non-malignant diseases. J Palliat Care 1997;13:28-33.
10. Sirkia K, Saarinen U, Ahlgren B, Hovi L: Terminal care of the child with cancer at home. Acta Paediatr 1997;86:1125-1130.
11. Vickers J, Carlise C: Choices and control: Parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs 2000;17:12-21.
12. Feudtner C, Silveira MJ, Christakis DA: Where do children with complex chronic conditions die? Patterns in Washington State, 1980-1998. Pediatrics 2002;109:656-660.
13. Feudtner C, DiGiuseppe DL, Neff JM: Hospital care for children and young adults in the last year of life: A population-based study. BMC Med 2003;1:3.
14. Collins JJ, Byrnes ME, Dunkel IJ, Lapin J, Nadel T, Thaler HT, Polyak T, Rapkin B, Portenoy RK: The measurement of symptoms in children with cancer. J Pain Symptom Manage 2000;19:353-377.
15. Collins JJ, Devine TD, Dick GS, Johnson EA, Kilham HA, Pinkerton CR, Stevens MM, Thaler HT, Portenoy RK: The measurement of symptoms in young children with cancer: The validation of the Memorial Symptom Assessment Scale in children aged 7-12. J Pain Symptom Manage 2002;23:10-16.
16. Drake R, Frost J, Collins JJ: The symptoms of dying children. J Pain Symptom Manage 2003;26:594-603.
17. Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, Emanuel EJ, Weeks JC: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000;342:326-333.
18. Cepeda MS, Africano JM, Manrique AM, Fragoso W, Carr DB: The combination of low dose of naloxone and morphine in PCA does not decrease opioid requirements in the postoperative period. Pain 2002;96:73-79.
19. Cepeda MS, Alvarez H, Morales O, Carr DB: Addition of ultralow dose naloxone to postoperative morphine PCA: Unchanged analgesia and opioid requirement but decreased incidence of opioid side effects. Pain 2004;107:41-46.
20. Bennett M, Lucas V, Brennan M, Hughes A, O'Donnell V, Wee B: Using anti-muscarinic drugs in the management of death rattle: Evidence-based guidelines for palliative care. Palliat Med 2002;16:369-374. 21.
21. Chou R, Peterson K, Helfand M: Comparative efficacy and safety of skeletal muscle relaxants for spasticity and musculoskeletal conditions: A systematic review. J Pain Symptom Manage 2004;28:140-175.
22. Roque M, Martinez MJ, Alonso P, Catala E, Garcia JL, Ferrandiz M: Radioisotopes for metastatic bone pain. Cochrane Database Syst Rev 2003:CD003347.
23. Berde CB, Sethna NF: Analgesics for the treatment of pain in children. N Engl J Med 2002;347:1094-1103.
24. Baxt C, Kassam-Adams N, Nance ML, Vivarelli-O'Neill C, Winston FK: Assessment of pain after injury in the pediatric patient: Child and parent perceptions. J Pediatr Surg 2004;39:979-983; discussion 979-983.
25. Goodenough B, Addicoat L, Champion GD, McInerney M, Young B, Juniper K, Ziegler JB: Pain in 4- to 6-year-old children receiving intramuscular injections: A comparison of the Faces Pain Scale with other self-report and behavioral measures. Clin J Pain 1997;13:60-73.
26. Hicks CL, von Baeyer CL, Spafford PA, van Korlaar I, Goodenough B: The Faces Pain Scale-Revised: Toward a common metric in pediatric pain measurement. Pain 2001;93:173-183.
27. World Health Organization: Cancer Pain Relief and Palliative Care in Children. Geneva: World Health Organization, 1998.
28. Kazak AE, Penati B, Brophy P, Himelstein B: Pharmacologic and psychologic interventions for procedural pain. Pediatrics 1998;102:59-66.
29. Prasad SA, Randall SD, Balfour-Lynn IM: Fifteen-count breathlessness score: An objective measure for children. Pediatr Pulmonol 2000;30:56-62.
30. Anbar RD: Self-hypnosis for the treatment of functional abdominal pain in childhood. Clin Pediatr (Phila) 2001;40:447-451.
31. Cohen S, Dawson T: Nebulized morphine as a treatment for dyspnea in a child with cystic fibrosis. Pediatrics 2002;110:e38.
32. Yuan CS, Foss JF, O'Connor M, Osinski J, Karrison T, Moss J, Roizen MF: Methylnaltrexone for reversal of constipation due to chronic methadone use: A radomized controlled trial. JAMA 2000;283:367-372.
33. Zylicz Z, Krajnik M, Sorge AA, Costantini M: Parox-etine in the treatment of severe non-dermatological pruritus: A randomized, controlled trial. J Pain Symptom Manage 2003;26:1105-1112.
34. Hockenberry MJ, Hinds PS, Barrera P, Bryant R, Adams-McNeill J, Hooke C, Rasco-Baggott C, Patterson-Kelly K, Gattuso JS, Manteuffel B: Three instruments to assess fatigue in children with cancer: The child, parent and staff perspectives. J Pain Symptom Manage 2003;25:319-328.
35. Dreifuss FE, Rosman NP, Cloyd JC, Pellock JM, Kuzniecky RI, Lo WD, Matsuo F, Sharp GB, Conry JA, Bergen DC, Bell WE: A comparison of rectal diazepam gel and placebo for acute repetitive seizures. N Engl J Med 1998;338:1869-1875.
36. Sabatino C: Survey of state EMS-DNR laws and protocols. J Law 1999;27:297.
37. Wharton RH, Levine KR, Buka S, Emanuel L: Advance care planning for children with special health care needs: A survey of parental attitudes. Pediatrics 1996;97:682-687.
38. Wissow LS, Hutton N, Kass N: Preliminary study of a values-history advance directive interview in a pediatric HIV clinic. J Clin Ethics 2001;12:161-172.
39. Wolfe J, Klar N, Grier HE, Duncan J, Salem-Schatz S, Emanuel EJ, Weeks JC: Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. JAMA 2000;284:2469-2475.
40. McCallum DE, Byrne P, Bruera E: How children die in hospital. J Pain Symptom Manage 2000;20:417-423.
41. Burns JP, Rushton CH: End-of-life care in the pediatric intensive care unit: Research review and recommendations. Crit Care Clin 2004;20:467-485.
42. Meyer EC, Burns JP, Griffith JL, Truog RD: Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med 2002;30:226-231.
43. Wall SN, Partridge JC: Death in the intensive care nursery: Physician practice of withdrawing and with-holding life support. Pediatrics 1997;99:64-70.
44. Kunin H: Ethical issues in pediatric life-threatening illness: Dilemmas of consent, assent, and communication. Ethics Behav 1997;7:43-57.
45. Weir RF, Peters C: Affirming the decisions adolescents make about life and death. Hastings Cent Rep 1997;27:29-40.
46. Child Abuse Amendments of 1984. In Public Law Number P.L. 98-457, 1984.
47. Field M, Behrman R (eds): When Cliildreti Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, D.C.: National Academy Press, 2002.
48. Kopelman LM, Irons TG, Kopelman AE: Neonatologists judge the "Baby Doe" regulations. N Engl J Med 1988;318:677-683.
49. Shapiro DL, Rosenberg P: The effect of federal regulations regarding handicapped newborns. A case report. JAMA 1984;252:2031-2033.
50. Rhoden N: Treating Baby Doe: The ethics of uncertainty. Hastings Cent Rep 1986;16:34-42.
51. Cuttini M, Kaminski M, Garel M, Lenoir S, Saracci R: End-of-life decisions in neonatal intensive care. Lancet 2000;356:2190-2191.
52. Freyer DR: Care of the dying adolescent: special considerations. Pediatrics 2004;113:381-388.
53. George R, Hutton S: Palliative care in adolescents. Eur J Cancer 2003;39:2662-2668.
54. Hartman R: Dying young: Cues from the courts. Arch Pediatr Adolesc Med 2004;58:615-619.
55. Anonymous. Palliative care for children: American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care, 2000.
56. Christakis DA, Mell L, Koepsell TD, Zimmerman FJ, Connell FA: Association of lower continuity of care with greater risk of emergency department use and hospitalization in children. Pediatrics 2001;107:524-529.
57. Newacheck PW, Inkelas M, Kim SE: Health services use and health care expenditures for children with disabilities. Pediatrics 2004;114:79-85.
58. Smith T, Coyne P, Cassel B, Penberthy L, Hopson A, Hager M: A high-volume specialist palliative care unit and team may reduce in-hospital end-of-life care costs. J Palliat Med 2003;6:699-705.
59. Emanuel LvG C, Ferris F: The education for physicians on end-of-life care (EPEC) curriculum. Princeton, N.J.: Robert Wood Johnson Foundation, 1999.
60. Ferrell B GM, Coyne P, Egan K, Paice J, Panke J: End-of-life nursing education consortium (ELNEC) project, 2000. American Association of Colleges of Nursing; 2000.
61. Initiative for Pediatric Palliative Care (IPPC), http:// www.ippcweb.org.
62. Papadatou D, Corr C, Frager G, Bouri M: Children's Project on Palliative Hospice Services: Education and Training Curriculum for Pediatric Palliative Care. Alexandria VA: National Hospice and Palliative Care Organization, 2003.
63. Stevens M: Psychological adaptation of the dying child. In: Doyle D, Hanks G, MacDonald N (eds): Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, 1998. pp. 1045-1055.
64. Corr C: Children's understanding of death: Striving to understand death. In: Doka KJ (ed): Children Mourning: Mourning Children. Washington, D.C.: Hospice Foundation of America, 1995. pp. 8-10.
65. Corr CA, Balk DE (eds): Handbook of Adolescent Death and Bereavement. New York: Springer Publishing, 1996.
66. Doka KJ: Living with Life-Threatening Illness. Lexington, MA: Lexington Books, 1993.
67. Doka KJ: Children Mourning: Mourning Children. Washington, D.C.: Hospice Foundation of America, 1995.
68. Levetown M (ed): Compendium of Pediatric Palliative Care: Children's International Project on Palliative/Hospice Services (ChIPPS). Alexandria VA: National Hospice and Palliative Care Organization, 2000.
69. Sourkes B: Armfuls of Time: The Psychological Experience of the Child with a Life Threatening Illness. Philadelphia, PA: University of Pittsburgh Press, 1995.
70. Kenyon B: Current research in children's conceptions of death: A critical review. Omega 2001;43:63-91.
71. Davies B, Brenner P, Orloff S, Sumner L, Worden W: Addressing spirituality in pediatric hospice and palliative care. J Palliat Care 2002;18:59-67.
72. Thayer P: Spiritual care of children and parents. In: Armstrong-Dailey A, Zarbock S, (eds): Hospice Care for Children. 2nd ed. New York: Oxford University Press, 2001, pp. 172-189.
73. Feudtner C, Haney J, Dimmers MA: Spiritual care needs of hospitalized children and their families: A national survey of pastoral care providers' perceptions. Pediatrics 2003;111:e67-72.
74. Bertman S: Grief and the Healing Arts: Creativity as Therapy. Amityville, NY: Baywood, 1999.
75. Furth G: The Secret World of Drawings: Healing Through Art. Boston: Sigo Press, 1988.
76. Bluebond-Langner M: The Private Lives of Dying Children. Princeton: Princeton University Press, 1978.
77. Kreicbergs U, Valdimarsdottir U, Onelov E, Henter J, Steineck G: Talking about death with children who have severe malignant disease. N Engl J Med 2004;351:1175-1186.
78. Wheeler I: Parental bereavement: the crisis of meaning. Death Stud 2001;25:51-66.
79. Ginzburg K, Geron Y, Solomon Z: Patterns of complicated grief among bereaved parents. Omega 2002;45:119-132.
80. Middleton W, Raphael B, Martinek N, Misso V: Pathological grief reactions. In: Stroebe M, Stroebe W, Hansson R (eds): Handbook of Bereavement. New York: Cambridge University Press, 1993. pp. 44-61.
81. Li J, Precht DH, Mortensen PB, Olsen J: Mortality in parents after death of a child in Denmark: A nationwide follow-up study. Lancet 2003;361:363-367.
82. Zisook S, Lyons L: Grief and relationship to the deceased. Int J Fam Psychiatry 1988;9:135-146.
83. Murphy S, Johnson C, Lohan J: The effectiveness of coping resources and strategies used by bereaved parents 1 and 5 years after the violent deaths of their children. Omega 2003;47:25-44.
84. Jordan J, Neimeyer R: Does grief counseling work? Death Stud 2003;27:765-786.
85. Hughes P, Turton P, Hopper E, Evans CD: Assessment of guidelines for good practice in psychosocial care of mothers after stillbirth: A cohort study. Lancet 2002;360:114-118.
86. Christ G, Bonanno G, Malkinson R, Rubin S: Bereavement experiences after the death of a child. In: Field M (ed): When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, D.C.: Institute of Medicine; 2002, pp. 553-579.
87. Davies B: Shadows in the Sun: The Experiences of Sibling Bereavement in Childhood. Philadelphia: Brunner/ Mazel, 1999.
88. Sumner L: Staff support in pediatric hospice care. In: Armstrong-Dailey A, Zarbock S (eds): Hospice Care for Children, 2nd ed. New York: Oxford University Press, 2001. pp. 190-212.
89. Barnes K: Staff stress in the children's hospice: Causes, effects and coping strategies. Int J Palliat Nurs 2001;7:248-254.
90. Spinetta JJ, Jankovic M, Ben Arush MW, Eden T, Epelman C, Greenberg ML, et al: Guidelines for the recognition, prevention, and remediation of burnout in health care professionals participating in the care of children with cancer: Report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Med Pediatr Oncol 2000;35:122-125.
91. van Staa AL, Visser A, van der Zouwe N: Caring for caregivers: experiences and evaluation of interventions for a palliative care team. Patient Educ Couns 2000;41:93-105.