Healthcare reform and concurrent curative care for terminally Ill children: A policy analysis

Journal of Hospice and Palliative Nursing

Volumn 13, Issue 2, 2011, Pages 81-88

  Lindley, Lisa C ^a  

^a UNIVERSITY OF NORTH CAROLINA   (United States)

Author keywords

children; concurrent curative care; end of life care; healthcare reform; policy analysis

Indexed keywords

EID: 79952175163     PISSN: 15222179     EISSN: 15390705     Source Type: Journal    
DOI: 10.1097/NJH.0b013e318202e308     Document Type: Article

References (85)

1. Govtrack. US. H. R. 3590-111th Congress: Patient Protection and Affordable Care Act. 2009. http://www.govtrack.us/congress/bill.xpd?bill=h111- 3590. Accessed May 6, 2010.
2. US Department of Health & Human Services. Letter to State Medicaid Directors on Hospice Care for Children in Medicaid and CHIP. 2010. http://www.scribd.com/doc/37423817/HHS-Letter-to-State-Medicaid-Directors-on- Hospice-Care-for-Children-in-Medicaid-and-CHIP. Accessed September 20, 2010.
3. Carter B, Levetown M. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook. Baltimore, MD: John Hopkins Press; 2004.
4. Connor S. Development of hospice and palliative care in the united states. Omega. 2007;56:89-99.
5. 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.
6. Beckstrand RL, Moore J, Callister L, Bond AE. Oncology nurses' perceptions of obstacles and supportive behaviors at the end of life. Oncol Nurs Forum. 2009;36:446-453.
7. Casarett DJ, Fishman JM, Lu HL, et al. The terrible choice: reevaluating hospice eligibility criteria for cancer. J Clin Oncol. 2009;27:953-959.
8. Feudtner C, Carroll KW, Hexem KR, Silberman J, Kang TI, Kazak AE. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study. Arch Pediatr Adolesc Med. 2010;164:831-839.
9. Michelson KN, Koogler T, Sullivan C, Ortega Mdel P, Hall E, Frader J. Parental views on withdrawing life-sustaining therapies in critically ill children. Arch Pediatr Adolesc Med. 2009;163:986-992.
10. Woodgate R, Degner L. A substantive theory of keeping the spirit alive: the spirit within children with cancer and their families. J Pediatr Oncol Nurs. 2003;20:103-119. (Pubitemid 38251127)
11. Docherty S, Miles M, Brandon D. Searching for "the dying point": providers' experiences with palliative care in pediatric acute care. Pediatr Nurs. 2007;33:335-341.
12. Hechler T, Blankenburg M, Friedrichsdorf S, et al. Parents' perspectives on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying of cancer. Klin Paediatr. 2008;220:134-136.
13. Ullrich C, Dussel V, Hilden J, Sheaffer J, Lehmann L, Wolfe J. End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider prospective and patterns of use. Blood. 2010a; 115:3879-3885.
14. 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.
15. Steele R, Davies B, Collins J, Cook K. End-of-life care in a children's hospice program. J Palliat Care. 2005;21:5-11. (Pubitemid 40544254)
16. Davies B, Collins J, Steele R, Cook K, Distler V, Brenner A. Parents' and children's perspectives of a children's hospice bereavement program. J Palliat Care. 2007;23:14-23.
17. Dickens DS. Comparing pediatric deaths with and without hospice support. Pediatr Blood Cancer. 2010;54:746-750.
18. Hays R, Valentine J, Haynes G, et al. The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life. J Palliat Med. 2006;9:716-728. (Pubitemid 43938848)
19. Hendricks-Ferguson V. Physical symptoms of children receiving pediatric hospice care at home during the last week of life. Oncol Nurs Forum. 2008;35: e108-e115.
20. Hawley B. Pediatric palliative and hospice care: Pennsylvania's model of collaboration. Pediatr Nurs. 2010;36:61.
21. Knapp C, Madden V, Curtis C, et al. Partners in care: Together for Kids: Florida's model of pediatric palliative care. J Palliat Med. 2008;11:1212-1220.
22. Children's Hospice International. The CHI PACC Program. 2009. http://www.chionline.org. Accessed March 20, 2008.
23. Hanley B, Falk N. Policy development and analysis: understanding the process. In: Mason D, Kline J, Chaffee M, eds. Policy & Politics in Nursing and Health Care. St Louis, MO: Saunders; 2007:75-93.
24. Balz D. Health-care vote looms as big issue for November elections. Washington Post. 2010. http://www.washingtonpost.com/wp-dyn/content/article/ 2010/03/22/AR2010032203597.html. Accessed March 30, 2010.
25. Brown T. States joined in suit against healthcare reform. Reuters. 2010. http://www.reuters.com/article/idUSTRE64D6CJ20100514. Accessed August 27, 2010.
26. Brandon D, Docherty S, Thorpe J. Infant and child deaths in acute care settings: implications for palliative care. J Palliat Med. 2007;10:910-918. (Pubitemid 47511991)
27. Martin J, Kung H, Mathews T, et al. Annual summary of vital statistics: 2006. Pediatrics. 2008;121:788-801.
28. Penchansky R, Thomas W. The concept of access: definition and relationship to consumer satisfaction. Med Care. 1981:127-140. (Pubitemid 11100255)
29. Feudtner C, Hays R, Haynes G, Geyer J, Neff J, Koepsell T. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics. 2001;107: e99-e103.
30. Institute of Medicine. When Children Die: Improving Palliative and End-of-life Care for Children and Their Families. Washington, DC: National Academy Press; 2003.
31. Davies B, Sehring SA, Partridge J, et al. Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics. 2008;121:282-288. (Pubitemid 351198450)
32. Fowler K, Poehling K, Billheimer D, et al. Hospice referral practices for children with cancer: a survey of pediatric oncologists. J Clin Oncol. 2006;24:1099-1104. (Pubitemid 46638807)
33. Hilden J, Himelstein B, Freyer D, Friebert S, Kane J. End-of-life care: special issues in pediatric oncology. In: Foley KM, Gelband H, eds. Improving Palliative Care in Cancer. Washington, DC: National Academy Press; 2001:161-198.
34. ChiPPS. A Call for Change: Recommendations to Improve the care of Children Living With Life-Threatening Conditions. Alexandria, VA: National Hospice and Palliative Care Organization; 2001:1.
35. Lyon M, Williams P, Woods E, et al. Do-not-resuscitate orders and/or hospice care, psychological health, and quality of life among children/adolescents with acquired immune deficiency syndrome. J Palliat Med. 2008;11:459-469. (Pubitemid 351444663)
36. Miedema B, Easley J, Fortin P, Hamilton R, Mathews M. The economic impact on families when a child is diagnosed with cancer. Current Oncology. 2008;15:173-178.
37. US Government Printing Office. Code of Federal Regulations. 42CFR418. 2010. 75.
38. Children's Hospice & Palliative Care Coalition. The Waiver. 2009. http://www.childrenshospice.org/?s=waiver. Accessed November 11, 2009.
39. Lindley LC, Mark BA. Children with special health care needs: impact of health care expenditures on family financial burden. J Child Fam Stud. 2010;19:79-89.
40. Bradley S, Sherwood P, Donovan H, et al. I could lose everything: understanding the cost of a brain tumor. J Neurooncol. 2007;85:329-338. (Pubitemid 350142523)
41. Himmelstein D, Warren E, Thorne D, Woolhandler S. Illness and injury as contributors to bankruptcy. Health Aff. 2005; Suppl Web Exclusives: W5-63-W5-73.
42. Chen A, Newacheck P. Insurance coverage and financial burden for families of children with special health care needs. Ambul Pediatr. 2006;6:204-209.
43. Davidoff A. Insurance for children with special health care needs: patterns of coverage and burden on families to provide adequate insurance. Pediatrics. 2004;114:394-403. (Pubitemid 39006667)
44. Newacheck P, Inkelas M, Kim SE. Health services use and health care expenditures for children with disabilities. Pediatrics. 2004;114:79-85. (Pubitemid 38857569)
45. Schneider A, Garfield R. Medicaid benefits. In: Medicaid Resource Book. Washington, DC: The Kaiser Commission on Medicaid and the Uninsured; 2002:49-72.
46. Kenen J. Cost: barring poor people from hospice is not smart (or compassionate) Medicaid policy. New American Foundation. 2007. http://health.newamerica.net. Accessed April 11, 2010.
47. Kaiser Family Foundation. Kaiser Commission on Medicaid and the Uninsured. 2004. http://www.kff.org/about/kcmu.cfm. Accessed August 1, 2009.
48. Adcox S. S. C. agency: Medicaid hospice will continue. The Herald. 2009: http://www.heraldonline.com. Accessed April 8, 2010.
49. California Department of Health Care Services. 2010-2011 Governor's Budget Highlights. 2010. http://www.dhcs.ca.gov/provgovpart/Documents/2010- 11%20Governor%20Budget%20Highlights.pdf. Accessed January 16, 2010.
50. Dunkelberg A, O'Malley M. Children's Medicaid and SHCIP in Texas: Tracking the Impact of Budget Cuts. 2004. http://www.kff.org/medicaid/upload/ Children-s-Medicaid-and-SCHIP-in-Texas-Tracking-the-Impact-of-Budget-Cuts- Executive-Summary.pdf. Accessed January 20, 2010.
51. Hospice & Palliative Care Association of Iowa. 2010 Legislative Agenda. 2010. http://www.iowahospice.org. Accessed April 11, 2010.
52. Shields M. Medicaid savings options outlined. Kansas Health Institute. 2010. http://www.khi.org. Accessed April 11, 2010.
53. Tuch H. Cuts in Medicaid Hospice Benefit Wrong. 2009. http://www.tampabay.com/opinion/columns/article956211.ece. Accessed August 1, 2009.
54. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the Twenty-First Century. Washington, DC: National Academy Press; 2001.
55. Drake R, Frost J, Collins JJ. The symptoms of dying children. J Pain Symptom Manage. 2003;26:594-603. (Pubitemid 36802283)
56. Heath J, Clarke N, Donath S, McCarthy M, Anderson V, Wolfe J. Symptoms and suffering at end of life in children with cancer: an Australian perspective. Med J Aust. 2010;192:71-75.
57. Orsey A, Belasco J, Ellenberg J, Schmitz K, Feudtner C. Variation in receipt of opiods by pediatric oncology patients who died in children's hospitals. Pediatr Blood Cancer. 2009;52:761-766.
58. Ullrich C, Dussel V, Hilden J, et al. Fatigue in children with cancer at end of life [published online ahead of print]. J Pain Symptom Manage. 2010.
59. National Hospice and Palliative Care Organization. NHPCO Quality Partners Stronger, Together: An Introduction. 2006: http://www.nhpco.org/files/public/ quality/quality-introbrochure.pdf. Accessed September 1, 2010.
60. Herr K, Titler M, Fine P, et al. Assessing and treating pain in hospice: current state of evidence-based practices. J Pain Symptom Manage. 2010;39:803-819.
61. Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant endof-life care: the parents' perspective. J Perinatol. 2007;27:510-516. (Pubitemid 47180412)
62. Feudtner C. Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatr Clin North Am. 2007;54:583-607. (Pubitemid 47539511)
63. Mack J, Hilden J, 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.
64. Widger K, Picot C. Parents' perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs. 2008;34:53-58.
65. Rhodes R, Mitchell S, Miller S, Connor S, Teno J. Bereaved family members' evaluation of hospice care: what factors influence overall satisfaction with services? J Pain Symptom Manage. 2008;35:365-371. (Pubitemid 351410458)
66. 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. (Pubitemid 34049105)
67. Himelstein B, Hilden J, Boldt A, Weissman D. Pediatric palliative care. N Engl J Med. 2004;350:1752-1762. (Pubitemid 38501144)
68. Friedman D, Hilden J, Powaski K. Issues and challenges in palliative care for children with cancer. Curr Pain Headache Rep. 2005;9:249-255. (Pubitemid 41223328)
69. Jha A, DesRoches C, Campbell E, et al. Use of electronic health records in U. S. hospitals. N Engl J Med. 2009;360:1628-1638.
70. Resnick H, Alwan M. Use of health information technology in home health and hospice agencies: United States, 2007. J Am Med Inform Assoc. 2010;17:389-395.
71. Golan H, Bielorai B, Grebler D, Izraeli S, Rechavi G, Toren A. Integration of a palliative and terminal care center into a comprehensive pediatric oncology department. Pediatr Blood Cancer. 2008;50:949-955. (Pubitemid 351500169)
72. Mack J, Wolfe J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr. 2006;18:10-14. (Pubitemid 43790881)
73. Hendrickson K, Rimar J. Patterns of hospital resource utilization of children with leukemia and CNS tumors: a comparison of children who survive and those who die within 3 years of diagnosis. Nurs Econ. 2009;27:35-44.
74. Mann C, Rowland D, Garfield R. Historical overview of children's health care coverage. Future Child. 2003;13:30-51.
75. Children's Hospice & Palliative Care Coalition. The Waiver. 2009. http://www.childrenshospice.org/?s=waiver. Accessed November 11, 2009.
76. Johnson N, Oliff P, Williams E. An Update on State Budget Cuts. Washington, DC: Center on Budget and Policy Priorities; 2010:1-15.
77. Robinson E. States of crisis for 46 governments facing Greek-style deficits. Bloomberg. 2010: http://www.bloomberg.com/news/2010-06-25/states-of- crisis-widen-as-46-governments-in-u-s-facegreek-style-deficits.html. Accessed September 20, 2010.
78. Hassmiller S. Nursing's role in healthcare reform. Am Nurse Today. 2010;5:68-69.
79. Johnston D, Nagel K, Friedman D, Meza J, Hurwitz C, Friebert S. Availability and use of palliative care and end-of-life services for pediatric oncology patients. J Clin Oncol. 2008;26:4646-4650.
80. Leuthner S, Boldt A, Kirby R. Where infants die: examination of place of death and hospice/home health care options in the state of Wisconsin. J Palliat Med. 2004;7:269-277. (Pubitemid 38525767)
81. National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America. 2009: http://www.ecommunity.com/homehealth/ uploads/files/NHPCO-facts-and-figures.pdf. Accessed September 1, 2010.
82. Himelstein B. Palliative care for infants, children, adolescents, and their families. J Palliat Med. 2006;9:163-181. (Pubitemid 43201779)
83. Hinds PS, Oakes LL, Hicks J, Anghelescu DL. End-of-life care for children and adolescents. Semin Oncol Nurs. 2005;21:53-62. (Pubitemid 40222488)
84. Malloy P, Summer E, Virani R, Ferrell B. End-of-life nursing education consortium for pediatric palliative care (ELNEC-PPC). Am J Matern Child Nurs. 2007;32:298-304.
85. Knapp C. E-health in pediatric palliative care. Am J Hosp Palliat Med. 2010;27:66-73.