Providing hospice care to children and young adults: A descriptive study of end-of-Life organizations

Journal of Hospice and Palliative Nursing

Volumn 11, Issue 6, 2009, Pages 315-323

  Lindley, Lisa ^a   Mark, Barbara ^a   Lee, Shoou Yih Daniel ^b  

^a UNIVERSITY OF NORTH CAROLINA   (United States)

^b University of North Carolina at Chapel Hill   (United States)

Author keywords

Children; Healthcare organizations; Hospice care; Hospices; Young adults

Indexed keywords

EID: 74349093153     PISSN: 15222179     EISSN: 15390705     Source Type: Journal    
DOI: 10.1097/NJH.0b013e3181bcfd62     Document Type: Article

References (40)

1. Himelstein B. Palliative care for infants, children, adolescents, and their families. J Palliat Med. 2006;9(1):163-181.
2. Children's Hospice International. Who we are. http://www.chionline. org/whoweare/. Accessed March 17, 2009.
3. National Hospice and Palliative Care Organization. NHPCO facts and figures: hospice care in America. http://www.nhpco.org/files/ public/Statistics-Research/NHPCO-facts-and-figures-2008.pdf. Accessed February 15, 2009.
4. Centers for Disease Control. Deaths by 10-year age groups: United States and each state. http://www.cdc.gov.libproxy.lib.unc.edu/ nchs/data/statab/ MortFinal2005-Worktable23F.pdf. Accessed April 22, 2009.
5. Kozier B, Erb G, Berman A, Snyder S. Fundamentals of Nursing. Saddle River, NJ: Pearson Prentice Hall; 2004.
6. Hendricks-Ferguson V. Physical symptoms of children receiving pediatric hospice care at home during the last week of life. Oncol Nurs Forum. 2008;35(6):E108-E115.
7. Davies B, Brenner P, Orloff S, Sumner L, Worden W. Forum addressing spirituality in pediatric hospice and palliative care. J Palliat Care. 2002;18(1):59-67.
8. Bartell A, Kissane D. Issues in pediatric palliative care: understanding families. J Palliat Care. 2005;21(3):165-172.
9. Duggal S, Farah P, Straatman L, Freeman L, Dickson S. The volunteer program in a children's hospice. J Palliat Med. 2008;11(7): 997-1001.
10. 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(7):1099-1104.
11. Hilden J, Himelstein B, Freyer D, Friebert S, Kane J. End-of-life care: special issues in pediatric oncology. In: Foley KM, Gelband H, ed. Improving Palliative Care in Cancer.Washington, DC: National Academy Press; 2001:161-198.
12. Institute of Medicine. When Children Die. Washington, DC: National Academies Press; 2003.
13. Friedman D, Hilden J, Powaski K. Issues and challenges in palliative care for children with cancer. Curr Pain Headache Rep. 2005;9(4):249-255.
14. Knapp C, Shenkman E, Marcu M, Madden V, Terza J. Pediatric palliative care: describing hospice users and identifying factors that affect hospice expenditures. J Palliat Med. 2009;12(3):1-7.
15. McCue K, Kim T. Association of market, mission, operational, and financial factors on hospital acquisition prices: 1999 through 2001. Health Care Manage Rev. 2005;30(1):24-31.
16. McCue M, Thompson J, Dodd-McCue D. Association of market, mission, operational, and financial factors with hospital's level of cash and security investments. Inquiry. 2000;37:441-1422
17. Child and Adolescent Health Measurement Initiative. 2003 National survey of children's health.www.nschdata.org. AccessedApril 12, 2009.
18. Lorenz K, Rosenfeld K, Asch S, Ettner S. Charity for the dying: who receives unreimbursed hospice care? J Palliat Med. 2003; 6(4):585-591.
19. Carlson M, Schlesinger M, Holford T, Morrison R, Bradley E. Regulating palliative care: the case of hospice. J Pain Symptom Manage. 2008;36(2):107-116.
20. Feudtner C, Silveira M, Shabbout M, Hoskins R. Distance from home when death occurs: a population-based study of Washington state, 1989-2002. Pediatrics. 2006;117(5):e932-e939.
21. Levi L. New hospice accreditation manual released by ACHC. Home Healthc Nurse. 2003;21(8):559-561.
22. O'Neill S, Ettner S, Lorenz K. Paying the price at the end of life: a consideration of factors that affect the profitability of hospice. J Palliat Med. 2008;11(7):1002-1008.
23. McCue M, Thompson J. Operational and financial performance of publicly traded hospice companies. J PalliatMed. 2005;8(6):1196-1206.
24. Lindrooth R, Weisbrod B. Do religious nonprofit and for-profit organizations respond differently to financial incentives? The hospice industry. J Health Econ. 2007;26(2):342-357.
25. Siden H, Miller M, Straatman L, Omesi L, Tucker T, Collins J. A report on location of death in paediatric palliative care between home, hospice and hospital. Palliat Med. 2008;22(7):831-834.
26. Huskamp H, Buntin M, Wang V, Newhouse J. Providing care at the end of life: do Medicare rules impede good care? Health Aff. 2001;20(3):204-211.
27. Connor S, Tecca M, LundPerson J, Teno J. Measuring hospice care: the National Hospice and Palliative Care Organization national hospice data set. J Pain Symptom Manage. 2004;28(4):316-328.
28. McCue M, Thompson J. Operational and financial performance of newly established hospices. Am J Hosp Palliat Care. 2006; 23(4):259-266.
29. Feudtner C, Feinstein J, Satchell M,ZhaoH, Kang T. Shifting place of death among children with complex chronic conditions in the united states, 1989-2003. J Am Med Assoc. 2007;297(24):2725-2732.
30. Hospice Association of America. Hospice facts & statistics. http:// www.nahc.org/facts/HospiceSta'ts08.pdf. AccessedMarch 17, 2009.
31. Dabbs D, Butterworth L, Hall E. Tender mercies: increasing access to hospice services for children with life-threatening conditions. MCN. Am J Matern Child Nurs. 2007;32(5):311-319.
32. Carlson M, Gallo W, Bradley E. Ownership status and patterns of care in hospice: results from the national home and hospice care survey. Med Care. 2004;42(5):432-438.
33. Lorenz K, Ettner S, Rosenfeld K, Carlisle D, Leake B, Asch S. Cash and compassion: profit status and the delivery of hospice services. J Palliat Med. 2002;5(4):507-514.
34. O'Neill S, Ettner S, Lorenz K. Are rural hospices at a financial disadvantage? Evidence from California. J Pain Symptom Manage. 2009;37(2):189-195.
35. Heilferty C. Spiritual development and the dying child: the pediatric nurse practitioner's role. J Pediatr Healthc. 2004;18(6):271-275.
36. Feudtner C, Haney J, Dimmers M. Spiritual care needs of hospitalized children and their families: a national survey of pastoral care providers' perceptions. Pediatrics. 2003;111(1):e67-e72.
37. 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(2):269-277.
38. California Department of Health Care Services. Medi-Cal benefits, waivers, and rates. http://www.dhcs.ca.gov/services/medial/Documents/ LTCRU/ltcru-07Hospice-PSD.pdf. Accessed March 17, 2009.
39. Ward-Smith P, Korphage R, Hutto C. Where health care dollars are spent when pediatric palliative care is provided. Nurs Econ. 2008;26(3):175-178.
40. Lorenz K, Asch S, Rosenfeld K, Liu H, Ettner S. Hospice admission practices: where does hospice fit in the continuum of care? J Am Geriatr Soc. 2004;52(5):725-730.