Pediatric Palliative Care in Childhood Cancer Nursing: From Diagnosis to Cure or End of Life

Seminars in Oncology Nursing

Volumn 26, Issue 4, 2010, Pages 205-221

  Foster, Terrah L ^a   Lafond, Deborah A ^a   Reggio, Cheryl ^a   Hinds, Pamela S ^a  

^a VANDERBILT UNIVERSITY SCHOOL OF NURSING   (United States)

Author keywords

Family; Nursing care; Pediatric oncology; Pediatric palliative care

Indexed keywords

ARTICLE; BEREAVEMENT; CHILD; CULTURAL ANTHROPOLOGY; HUMAN; HUMAN RELATION; INTERPERSONAL COMMUNICATION; MEDICAL ETHICS; NEOPLASM; NURSING; ONCOLOGY NURSING; PALLIATIVE THERAPY; PEDIATRIC NURSING; RELIGION;

BEREAVEMENT; CHILD; COMMUNICATION; CULTURE; ETHICS, NURSING; HUMANS; NEOPLASMS; ONCOLOGIC NURSING; PALLIATIVE CARE; PEDIATRIC NURSING; PROFESSIONAL-FAMILY RELATIONS; SPIRITUALITY;

EID: 77958163352     PISSN: 07492081     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.soncn.2010.08.003     Document Type: Article

References (91)

1. Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America April 2009, National Hospice and Palliative Care Organization, Alexandria, VA.
2. Knapp C.A., Thompson L.A., Vogel W.B., Madden V.L., Shenkman E.A. Developing a pediatric palliative care program: addressing the lack of baseline expenditure information. Am J Hosp Palliat Care 2009, 26:40-46.
3. Duncan J., Spengler E., Wolfe J. Providing pediatric palliative care: PACT in action. MCN Am J Matern Child Nurs 2007, 32:279-287.
4. Palliative Care for Children. Pediatrics 2000, 106:351-357. American Academy of Pediatrics (AAP) Committee on Bioethics.
5. Field M.J., Behrman R.E. When children die: improving palliative and end-of-life care for children and their families. Institute of Medicine 2003, The National Academies Press, Washington, DC.
6. Center to Advance Palliative Care. Palliative Care Tools, Training and Technical Assistance. 2010. Available at: Accessed May 3, 2010. http://www.capc.org.
7. Levetown M., Dokken D., Heller K.S., et al. A Pediatric Palliative Care Institutional Self-Assessment Tool (ISAT) 2002, for The Initiative for Pediatric Palliative Care (IPPC), Educational Development Center, Inc, Newton, MA.
8. Bjork M., Wiebe T., Hallstrom I. Striving to survive: families' lived experiences when a child is diagnosed with cancer. J Pediatr Oncol Nurs 2005, 22:265-275.
9. Nolbris M., Enskar K., Hellstrom A.L. Experience of siblings of children treated for cancer. Eur J Oncol Nurs 2007, 11:106-112.
10. Houtzager B.A., Grootenhuis M.A., Caron H.N., Last B.F. Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis. Psychooncology 2004, 13:499-511.
11. Murray J.S. A qualitative exploration of psychosocial support for siblings of children with cancer. J Pediatr Nurs 2002, 17:327-337.
12. Houtzager B.A., Grootenhuis M.A., Hoekstra-Weebers J.E., Last B.F. One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer. Child Care Health Dev 2005, 31:75-87.
13. Puchalski C., Ferrell B., Virani R., et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med 2009, 12:885-904.
14. Browning D.M., Solomon M.Z. Relational learning in pediatric palliative care: transformative education and the culture of medicine. Child Adolesc Psychiatr Clin North Am 2006, 15:795-815.
15. Desai P.P., Ng J.B., Bryant S.G. Care of children and families in the CICU: a focus on their developmental, psychosocial, and spiritual needs. Crit Care Nurs Q 2002, 25:88-97.
16. Friebert S, Ballard K. Spirituality in Pediatric Palliative Care: Family Stories of Relationship. Quality of Life for the Children, The Third Annual Pediatric Palliative Care Conference, District of Columbia Pediatric Palliative Care Collaborative. Washington DC, 2009.
17. Carter B.S., Levetown M. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook 2004, Johns Hopkins University Press, Baltimore, MD.
18. Walco G.A. Religion, spirituality, and the practice of pediatric oncology. J Pediatr Hematol Oncol 2007, 29:733-735.
19. Sawatzky R., Pesut B. Attributes of spiritual care in nursing practice. J Holistic Nurs 2005, 23:19-33.
20. Cobb M., Robshaw V. The Spiritual Challenge of Health Care 1998, Churchill Livingston, Edinburgh, Scotland.
21. Puchalski C., Hall P., Weaver L., Hupe D., Seely J.F. Palliative care and end-of-life education - community-based palliative care education: can it improve care of the terminally ill?. Academic Med 1999, 74:S105.
22. Thayer P. Spiritual care of children with life-limiting illness. ChiPPS Newsletter, February 2008. Available at: Accessed July 24, 2010. http://www.nhpco.org/files/public/ChiPPS/ChiPPS_February_2008.pdf.
23. Amery J. Children's palliative care in Africa 2009, Oxford University Press, Oxford, United Kingdom.
24. Mack J.W., Hinds P.S. Practical aspects of communication. Textbook of interdisciplinary pediatric palliative care 2011, 179-189. Elsevier, Philadelphia, PA. J. Wolfe, P. Hinds, B. Sourkes (Eds.).
25. Hinds P.S., Drew D., Oakes L.L., et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 2005, 23:9146-9154.
26. Last B.F., Van Veldhuizen A.M. Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years. Eur J Cancer 1996, 32A:290-294.
27. Levetown M. American Academy of Pediatrics Committee on Bioethics. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics 2008, 121:e1441-e1460.
28. Wolfe J., Klar N., Grier H.E., et al. 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.
29. Contro N., Larson J., Scofield S., Sourkes B., Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 2002, 156:14-19.
30. Fallat M.E., Glover J. American Academy of Pediatrics Committee on Bioethics. Professionalism in pediatrics. Pediatrics 2007, 120:e1123-e1133.
31. Goldie J., Schwartz L., Morrison J. Whose information is it anyway? Informing a 12-year-old patient of her terminal prognosis. J Med Ethics 2005, 31:427-434.
32. Ranmal R., Prictor M., Scott J.T. Interventions for improving communication with children and adolescents about their cancer. Cochrane Database Syst Rev 2008, (4). CD002969.
33. Clarke J.N., Fletcher P. Communication issues faced by parents who have a child diagnosed with cancer. J Pediatr Oncol Nurs 2003, 20:175-191.
34. Parsons S.K., Saiki-Craighill S., Mayer D.K., et al. Telling children and adolescents about their cancer diagnosis: Cross-cultural comparisons between pediatric oncologists in the US and Japan. Psychooncology 2007, 16:60-68.
35. Young B., Dixon-Woods M., Windridge K.C., Heney D. Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ 2003, 326:305.
36. Baile W.F., Buckman R., Lenzi R., Glober G., Beale E.A., Kudelka A.P. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000, 5:302-311.
37. Beale E.A., Baile W.F., Aaron J. Silence is not golden: communicating with children dying from cancer. J Clin Oncol 2005, 23:3629-3631.
38. Von Gunten C.F., Ferris F.D., Emanuel L.L. The patient-physician relationship. Ensuring competency in end-of-life care: communication and relational skills. JAMA 2000, 284:3051-3057.
39. Ishibashi A. The needs of children and adolescents with cancer for information and social support. Cancer Nurs 2001, 24:61-67.
40. Beauchamp T.L., Childress J.F. Principles of Biomedical Ethics 2001, Oxford University Press, New York, NY.
41. American Nurses Association (ANA). Code of ethics for nurses with interpretive statements. 2005. Available at: Accessed July 24, 2010. http://nursingworld.org/MainMenuCategories/ThePracticeofProfessionalNursing/EthicsStandards/CodeofEthics.aspx.
42. Browning D. To show our humanness-relational and communicative competence in pediatric palliative care. Bioethics Forum 2002, 18:23-28.
43. Levine M.E. Nursing ethics and the ethnical nurse. Am J Nurs 1977, 77:845-849.
44. Rushton C.H. A framework for integrated pediatric palliative care: being with dying. J Pediat Nurs 2005, 20:311-325.
45. Jacobs H.H. Ethics in pediatric end-of-life care: a nursing perspective. J Pediat Nurs 2005, 20:360-369.
46. Wolfe J., Klar N., Grier H.E., et al. 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.
47. Wolfe J., Grier H.E., Klar N., et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000, 342:326-333.
48. Johnston D.L., Nagel K., Friedman D.L., Meza J.L., Hurwitz C.A., Friebert S. Availability and use of palliative care and end-of-life services for pediatric oncology patients. J Clin Oncol 2008, 26:4646-4650.
49. Hinds P.S., Oakes L.L., Hicks J., et al. "Trying to be a good parent" as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. J Clin Oncol 2009, 27:5979-5985.
50. Kane J.R., Primomo M. Alleviating the suffering of seriously ill children. Am J Hosp Palliat Care 2001, 18:161-169.
51. Kane J.R., Barber R.G., Jordan M., Tichenor K.T., Camp K. Supportive/palliative care of children suffering from life-threatening and terminal illness. Am J Hosp Palliat Care 2000, 17:165-172.
52. Frager G. Pediatric palliative care: building the model, bridging the gaps. J Palliat Care 1996, 12:9-12.
53. Liben S. Pediatric palliative medicine: obstacles to overcome. J Palliat Care 1996, 12:24-28.
54. Attig T. Beyond pain: the existential suffering of children. J Palliat Care 1996, 12:20-23.
55. Collins J.J. Intractable pain in children with terminal cancer. J Palliat Care 1996, 12:29-34.
56. Hunt A., Goldman A., Devine T., Phillips M. Transdermal fentanyl for pain relief in a paediatric palliative care population. Palliat Med 2001, 15:405-412.
57. Kenny N.P., Frager G. Refractory symptoms and terminal sedation of children: Ethical issues and practical management. J Palliat Care 1996, 12:40-45.
58. Hinds P.S., Quargnenti A.G., Wentz T.J. Measuring symptom distress in adolescents with cancer. J Pediatr Oncol Nurs 1992, 9:84-86.
59. Hongo T., Watanabe C., Okada S., et al. Analysis of the circumstances at the end of life in children with cancer: symptoms, suffering and acceptance. Pediatr Int 2003, 45:60-64.
60. Prichard M., Burghen E., Srivastava D.K., et al. Cancer-related symptoms most concerning to parents during the last week and last day of their child's life. Pediatrics 2008, 121:e1301-e1309.
61. Houlahan K.E., Branowicki P.A., Mack J.W., Dinning C., McCabe M. Can end of life care for the pediatric patient suffering with escalating and intractable symptoms be improved?. J Pediatr Oncol Nurs 2006, 23:45-51.
62. Woodgate R.L., Degner L.F., Yanofsky R. A different perspective to approaching cancer symptoms in children. J Pain Symptom Manage 2003, 26:800-817.
63. Roddenberry A., Renk K. Quality of life in pediatric cancer patients: The relationships among parents' characteristics, children's characteristics, and informant concordance. J Child Fam Studies 2008, 17:402-426.
64. Wolfe J., Hammel J.F., Edwards K.E., et al. Easing of suffering in children with cancer at the end of life: Is care changing?. J Clin Oncol 2008, 26:1717-1723.
65. Hinds P., Martin J. Hopefulness and the self-sustaining process in adolescents with cancer. Nurs Res 1988, 37:336-340.
66. Hinds P., Quargnenti A., Bush A., et al. An evaluation of the impact of a self-care coping intervention on psychological and clinical outcomes in adolescents with newly diagnosed cancer. Eur J Oncol Nurs 2000, 4:6-17.
67. Hinds P.S. The hopes and wishes of adolescents with cancer and the nursing care that helps. Oncol Nurs Forum 2004, 31:927-934.
68. Mack J.W., Wolfe J., Cook E.F., Grier H.E., Cleary P.D., Weeks J.C. Hope and prognostic disclosure. J Clin Oncol 2007, 25:5636-5642.
69. Mack J.W., Wolfe J., Grier H.E., Cleary P.D., Weeks J.C. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol 2006, 24:5265-5270.
70. Hinds P.S., Oakes L., Furman W., et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nurs 2001, 24:122-134.
71. Maurer S.H., Hinds P.S., Spunt S.L., Furman W.L., Kane J.R., Baker J.N. Decision making by parents of children with incurable cancer who opt for enrollment on a Phase I trial compared with choosing a do not resuscitate/terminal care option. J Clin Oncol 2010, 28:3292-3298.
72. Foster T.L., Gilmer M.J., Davies B., et al. Bereaved parents' and siblings' reports of legacies created by children with cancer. J Ped Oncol Nurs 2009, 26:369-376.
73. Levetown M., Liben S., Audet M. Palliative care in the pediatric intensive care unit. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook 2004, 273-291. Johns Hopkins University Press, Baltimore, MD. B.S. Carter, M. Levetown (Eds.).
74. Armstrong-Dailey A., Zarbock S.F. Hospice Care for Children 2001, Oxford University Press, New York, NY.
75. Himelstein B.P., Hilden J.M., Boldt A.M., Weissman D. Pediatric palliative care. N Engl J Med 2004, 350:1752-1762.
76. Jacob S.R. An analysis of the concept of grief. J Adv Nurs 1993, 18:1787-1794.
77. Lobb E.A., Clayton J.M., Price M.A. Suffering, loss and grief in palliative care. Aust Fam Physician 2006, 35(10):772-775.
78. Macnab A.J., Northway T., Ryall K., Scott D., Straw G. Death and bereavement in a paediatric intensive care unit: parental perceptions of staff support. Paediatr Child Health 2003, 8:357-362.
79. Todres I.D. Communication between physician, patient, and family in the pediatric intensive care unit. Crit Care Med 1993, 21(9 Suppl):S383-S386.
80. Brown P.S., Sefansky S. Enhancing bereavement care in the pediatric ICU. Crit Care Nurse 1995, 15:59-64.
81. Midson R., Carter B. Addressing end of life care issues in a tertiary treatment centre: Lessons learned from surveying parents' experiences. J Child Health Care 2010, 14:52-66.
82. Klass D., Silverman P.R., Nickman S.L. Continuing bonds: new understandings of grief 1996, Taylor & Francis, Washington, DC.
83. Asai M., Fujimori M., Akizuki N., Inagaki M., Matsui Y., Uchitomi Y. Psychological states and coping strategies after bereavement among the spouses of cancer patients: a qualitative study. Psychooncology 2010, 19:38-45.
84. Davies R. Mothers' stories of loss: their need to be with their dying child and their child's body after death. J Child Health Care 2005, 9:288-300.
85. Packman W., Horsley H., Davies B., Kramer R. Sibling bereavement and continuing bonds. Death Studies 2006, 30:817-841.
86. Foster TL, Gilmer MJ, Davies B, et al. Comparison of continuing bonds reported by parents and siblings after a child's death from cancer. Death Studies [In press].
87. Doyle D. Oxford Textbook of Palliative Medicine 2005, Oxford University Press, New York, NY.
88. Standards of Practice for Pediatric Palliative Care and Hospice 2009, NHPCO, National Hospice and Palliative Care Organization (NHPCO), Alexandria, VA.
89. Buscaglia L. The Fall of Freddie the Leaf: A Story of Life for All Ages. Thorofare, NJ: SLACK Inc.: 1982.
90. Ferrell B., Coyle N. The Nature of Suffering and the Goals of Nursing 2008, Oxford University Press, New York, NY.
91. Hospice and Palliative Nurses Association. HPNA photo memorial tribute. 2010. Available at: Accessed July 24, 2010. http://www.hpna.org/DisplayPage.aspx?Title=HPNA%2520Photo%2520Memorial%2520Tribute.