Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis

Journal of Pain and Symptom Management

Volumn 40, Issue 6, 2010, Pages 821-828

  Dellon, Elisabeth P ^a   Shores, Mitchell D ^a   Nelson, Katherine I ^b   Wolfe, Joanne ^c,d   Noah, Terry L ^a   Hanson, Laura C ^a  

^a UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

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

^c BOSTON CHILDREN S HOSPITAL   (United States)

^d DANA FARBER CANCER INSTITUTE   (United States)

Author keywords

Advance care planning; Communication; Cystic fibrosis; Patient preferences

Indexed keywords

ACUTE DISEASE; ADULT; AGED; ARTICLE; BEREAVEMENT; CAREGIVER; CYSTIC FIBROSIS; FEMALE; HUMAN; INTENSIVE CARE; LUNG FIBROSIS; MAJOR CLINICAL STUDY; MALE; MEDICAL DECISION MAKING; PHYSICIAN; SEMI STRUCTURED INTERVIEW; TERMINAL CARE;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; CAREGIVERS; CHILD; CYSTIC FIBROSIS; DECISION MAKING; HUMANS; MIDDLE AGED; PALLIATIVE CARE; QUALITY OF LIFE;

EID: 78649973258     PISSN: 08853924     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jpainsymman.2010.03.021     Document Type: Article

References (30)

1. F.J. Accurso Update in cystic fibrosis 2005 Am J Respir Crit Care Med 173 2006 944 947
2. Cystic Fibrosis Foundation Patient Registry 2007 annual data report to the center directors 2008 Cystic Fibrosis Foundation Bethesda, MD
3. E.P. Dellon, M.W. Leigh, J.R. Yankaskas, and T.L. Noah Effects of lung transplantation on inpatient end of life care in cystic fibrosis J Cyst Fibros 6 2007 396 402
4. N. Sood, L.J. Paradowski, and J.R. Yankaskas Outcomes of intensive care unit care in adults with cystic fibrosis Am J Respir Crit Care Med 163 2001 335 338
5. H. Vedam, C. Moriarty, P.J. Torzillo, D. McWilliam, and P.T. Bye Improved outcomes of patients with cystic fibrosis admitted to the intensive care unit J Cyst Fibros 3 2004 8 14
6. A. Berlinski, L.L. Fan, C.A. Kozinetz, and C.M. Oermann Invasive mechanical ventilation for acute respiratory failure in children with cystic fibrosis: outcome analysis and case-control study Pediatr Pulmonol 34 2002 297 303
7. P.B. Davis, and P.A. di Sant'Agnese Assisted ventilation for patients with cystic fibrosis JAMA 239 1978 1851 1854
8. A. Elizur, S.C. Sweet, and C.B. Huddleston Pre-transplant mechanical ventilation increases short-term morbidity and mortality in pediatric patients with cystic fibrosis J Heart Lung Transplant 26 2007 127 131
9. O. Efrati, M.R. Kremer, and A. Barak Improved survival following lung transplantation with long-term use of bilevel positive pressure ventilation in cystic fibrosis Lung 185 2007 73 79
10. P.G. Noone Non-invasive ventilation for the treatment of hypercapnic respiratory failure in cystic fibrosis Thorax 63 2008 5 7
11. B.P. Madden, H. Kariyawasam, and A.J. Siddiqi Noninvasive ventilation in cystic fibrosis patients with acute or chronic respiratory failure Eur Respir J 19 2002 310 313
12. M.K. Song, and A.J. De Vito Dabbs Advance care planning after lung transplantation: a case of missed opportunities Prog Transplant 16 2006 222 225
13. Sawicki G, Asher D, Sellers D, Robinson W. Advance care planning in adults with cystic fibrosis. 2007; Anaheim, CA. Pediatr Pulmonol. p. 402.
14. W. Robinson Palliative care in cystic fibrosis J Palliat Med 3 2000 187 192
15. J.R. Yankaskas, B.C. Marshall, B. Sufian, R.H. Simon, and D. Rodman Cystic fibrosis adult care: consensus conference report Chest 125 Suppl 1 2004 1S 39S
16. University of Washington Quality of dying and death questionnaire for family members, version 3.2A Available from http://depts.washington.edu/eolcare/ instruments/ Accessed May 2009
17. Brown University After-death bereaved family member interview: hospital version. 2000 Available from http://www.chcr.brown.edu/pcoc/linkstoinstrumhtm. htm Accessed May 8, 2009
18. Wolfe J. Survey about caring for children with cancer. Children's Hospital Boston.
19. J.R. Yankaskas, and G.B. Mallory Jr. Lung transplantation in cystic fibrosis: consensus conference statement Chest 113 1998 217 226
20. P.G. Noone, and T.M. Egan Cystic fibrosis: when to refer for lung transplantation - is the answer clear? Am J Respir Crit Care Med 166 2002 1531 1532
21. W.M. Robinson, S. Ravilly, C. Berde, and M.E. Wohl End-of-life care in cystic fibrosis Pediatrics 100 2 Pt 1 1997 205 209
22. D. Ford, and P.A. Flume Impact of lung transplantation on site of death in cystic fibrosis J Cyst Fibros 6 2007 391 395
23. I. Mitchell, E. Nakielna, E. Tullis, and C. Adair Cystic fibrosis. End-stage care in Canada Chest 6 6 2000 80 84
24. T.G. Liou, F.R. Adler, and D. Huang Use of lung transplantation survival models to refine patient selection in cystic fibrosis Am J Respir Crit Care Med 171 2005 1053 1059
25. T.G. Liou, F.R. Adler, D.R. Cox, and B.C. Cahill Lung transplantation and survival in children with cystic fibrosis N Engl J Med 357 2007 2143 2152
26. T.E. Quill Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the "elephant in the room" J Am Med Assoc 284 2000 2502 2507
27. P.A. Singer, D.K. Martin, and J.V. Lavery Reconceptualizing advance care planning from the patient's perspective Arch Intern Med 158 1998 879 884
28. G.S. Sawicki, D.E. Sellers, K. McGuffie, and W. Robinson Adults with cystic fibrosis report important and unmet needs for disease information J Cyst Fibros 6 2007 411 416
29. M. Bakitas, T.A. Ahles, and K. Skalla Proxy perspectives regarding end-of-life care for persons with cancer Cancer 112 2008 1854 1861
30. T.R. Fried, and J.R. O'Leary Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning J Gen Intern Med 23 2008 1602 1607