Advance care planning in adults with cystic fibrosis

Journal of Palliative Medicine

Volumn 11, Issue 8, 2008, Pages 1135-1141

  Sawicki, Gregory S ^a   Dill, Edward J ^b   Asher, Daniel ^a   Sellers, Deborah E ^b   Robinson, Walter M ^b  

^a BOSTON CHILDREN S HOSPITAL   (United States)

^b EDUCATION DEVELOPMENT CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; CYSTIC FIBROSIS; FAMILY DECISION MAKING; FEMALE; FORCED EXPIRATORY VOLUME; HEALTH SURVEY; HUMAN; LIVING WILL; MAJOR CLINICAL STUDY; MALE; PATIENT CARE;

ADOLESCENT; ADULT; ADVANCE CARE PLANNING; ADVANCE DIRECTIVES; ANALYSIS OF VARIANCE; CYSTIC FIBROSIS; FAMILY RELATIONS; FEMALE; HUMANS; LINEAR MODELS; LONGITUDINAL STUDIES; MALE; MIDDLE AGED; PHYSICIAN-PATIENT RELATIONS; SURVIVAL ANALYSIS; YOUNG ADULT;

EID: 55549099253     PISSN: 10966218     EISSN: None     Source Type: Journal    
DOI: 10.1089/jpm.2008.0051     Document Type: Article

References (31)

1. Cystic Fibrosis Foundation: Cystic Fibrosis Foundation Patient Registry Annual Data Report for 2004. Bethesda, MD: Cystic Fibrosis Foundation, 2005.
2. It's All About Suzy: Quality Improvement in CF Care. 2006. www.cff.org/UploadedFiles/LivingWithCF/CareCenter-Network/QualityImprovement/ All%20About%20Suzy%20Quality%20Improvement%20in%20CF%20Care.pdf (Last accessed September 12, 2008.)
3. Morrison RS, Meier DE: Clinical practice. Palliative care. N Engl J Med 2004;350:2582-2590.
4. Selecky PA, Eliasson CA, Hall RI, Schneider RF, Varkey B, McCaffree DR: Palliative and end-of-life care for patients with cardiopulmonary diseases: American College of Chest Physicians position statement. Chest 2005;128:3599-3610.
5. Miles SH, Koepp R, Weber EP: Advance end-of-life treatment planning. A research review. Arch Intern Med 1996;156:1062-1068.
6. Yankaskas JR, Marshall BC, Sufian B, Simon RH, Rodman D: Cystic fibrosis adult care: Consensus conference report. Chest 2004;125(1 Suppl):1S-39S.
7. Mitchell I, Nakielna E, Tullis E, Adair C: Cystic fibrosis. End-stage care in Canada. Chest 2000;118:80-84.
8. Robinson WM: Palliative care in cystic fibrosis. J Palliat Med 2000;3:187-192.
9. Robinson WM, Ravilly S, Berde C, Wohl ME: End-of-life care in cystic fibrosis. Pediatrics 1997;100:205-209.
10. Liou TG, Adler FR, FitzSimmons SC, Cahill BC, Hibbs JR, Marshall BC: Predictive 5-year survivorship model of cystic fibrosis. Am J Epidemiol 2001;153:345-352.
11. Sellers DE, McGuffie KI, Sawicki G, Robinson WM: The relative contribution of psychosocial and clinical factors to quality of life in adults with CF. Am J Resp Crit Care Med (in press).
12. Asp C, Spring BK, Sokolowski MP. The Massachusetts Commission on End of Life Care: End of Life Care Survey. www.endoflifecommission.org/end_pages/about. htm#reports (Last accessed March 7, 208.)
13. Foti ME, Bartels SJ, Van Citters AD, Merriman MP, Fletcher KE: End-of-life treatment preferences of persons with serious mental illness. Psychiatr Serv 2005;56:585-591.
14. Gelman A, Hill J: Data Analysis Using Regression and Multilevel/hierarchical Models. New York: Cambridge University Press, 2007.
15. Snijders TAB, Bosker RJ: Multilevel Analysis: An Introduction to Basic and Advanced Multilevel Modeling. London: Sage, 1999.
16. Raudenbush SW, Bryk AS: Hierarchical Linear Models: Applications and Data Analysis Methods, 2nd ed. Thousand Oaks, CA: Sage, 2002.
17. Ford D, Flume PA: Impact of lung transplantation on site of death in cystic fibrosis. J Cyst Fibros 2007;6:391-395.
18. Lyon ME, McCabe MA, Patel KM, D'Angelo LJ: What do adolescents want? An exploratory study regarding end-of-life decision-making. J Adolesc Health 2004;35:529e1-6.
19. Yabroff KR, Mandelblatt JS, Ingham J: The quality of medical care at the end-of-life in the USA: existing barriers and examples of process and outcome measures. Palliat Med 2004;18:202-216.
20. Rabow MW, Dibble SL, Pantilat SZ, McPhee SJ: The comprehensive care team: A controlled trial of outpatient palliative medicine consultation. Arch Internal Med 2004;164:83-91.
21. Song MK, De Vito Dabbs AJ: Advance care planning after lung transplantation: a case of missed opportunities. Prog Transplant 2006;16:222-225.
22. Erby LH, Rushton C, Geller G: "My son is still walking": Stages of receptivity to discussions of advance care planning among parents of sons with Duchenne muscular dystrophy. Semin Pediatr Neurol 2006;13:132-140.
23. Morrison RS, Meier DE: High rates of advance care planning in New York City's elderly population. Arch Intern Med 2004;164:2421-2426.
24. Yohannes AM. Palliative care provision for patients with chronic obstructive pulmonary disease. Health Qual Life Outcomes 2007;5:17.
25. Ramsaroop SD, Reid MC, Adelman RD: Completing an advance directive in the primary care setting: What do we need for success? J Am Geriatr Soc 2007;55:277-283.
26. Brown JB, Beck A, Boles M, Barrett P: Practical methods to increase use of advance medical directives. J Gen Intern Med 1999;14:21-26.
27. Heffner JE, Fahy B, Hilling L, Barbieri C: Outcomes of advance directive education of pulmonary rehabilitation patients. Am J Resp Crit Care Med 1997;155:1055-1059.
28. Pearlman RA, Starks H, Cain KC, Cole WG: Improvements in advance care planning in the Veterans Affairs System: Results of a multifaceted intervention. Arch Intern Med 2005;165:667-674.
29. Schwartz CE, Wheeler HB, Hammes B, Basque N, Edmunds J, Reed G, Ma Y, Li L, Tabloski P, Yanko J; UMass End-of-Life Working Group: Early intervention in planning end-oflife care with ambulatory geriatric patients: Results of a pilot trial. Arch Intern Med 2002;162:1611-1618.
30. Lynn J, Ely EW, Zhong Z, Dawson NV, Connors A, Desbiens NA, Claessens M, McCarthy EP: Living and dying with chronic obstructive pulmonary disease. J Am Geriatr Soc 2000;48(5 Suppl):S91-100.
31. Chapman E, Landy A, Lyon A, Haworth C, Bilton D: End of life care for adult cystic fibrosis patients: Facilitating a good enough death. J Cyst Fibros 2005;4:249-257.