End of life care for patients with cystic fibrosis

Journal of Cystic Fibrosis

Volumn 10, Issue SUPPL. 2, 2011, Pages

  Sands, Dorota ^a   Repetto, Teresa ^b   Dupont, Lieven J ^c   Korzeniewska Eksterowicz, Aleksandra ^d   Catastini, Paola ^b   Madge, Susan ^e  

^a INSTITUTE OF MOTHER AND CHILD   (Poland)

^b UNIVERSITY OF FLORENCE   (Italy)

^c UNIVERSITY HOSPITALS LEUVEN   (Belgium)

^d MEDICAL UNIVERSITY OF LODZ   (Poland)

^e ROYAL BROMPTON HOSPITAL   (United Kingdom)

Author keywords

Cystic fibrosis; End of life; Palliative care

Indexed keywords

ANTIDEPRESSANT AGENT; ANTIEMETIC AGENT; ANXIOLYTIC AGENT; BENZODIAZEPINE; CHLORPROMAZINE; HALOPERIDOL; LORAZEPAM; MIDAZOLAM; MORPHINE; MORPHINE DERIVATIVE; PENTOBARBITAL;

ABDOMINAL DISCOMFORT; AGITATION; AGRANULOCYTOSIS; ANGIONEUROTIC EDEMA; ANXIETY; ANXIETY DISORDER; ARTICLE; BEHAVIOR CHANGE; BIPHASIC POSITIVE AIRWAY PRESSURE; BLOOD PRESSURE VARIABILITY; BRADYCARDIA; BREATHING RATE; CONFUSION; CONTINUOUS INFUSION; COUNSELING; CYSTIC FIBROSIS; DIAPHORESIS; DISEASE SEVERITY; DRUG DOSE ESCALATION; DRUG DOSE INCREASE; DRUG DOSE TITRATION; DRUG ERUPTION; DYSPNEA; EXCITEMENT; EXTRAPYRAMIDAL SYMPTOM; FAMILY COUNSELING; FORCED EXPIRATORY VOLUME; HEALTH CARE PLANNING; HICCUP; HUMAN; HYPOTENSION; LARYNX SPASM; LOADING DRUG DOSE; LOW DRUG DOSE; LUNG TRANSPLANTATION; MORTALITY; NAUSEA; NEBULIZATION; NEUROLEPTIC MALIGNANT SYNDROME; NONINVASIVE VENTILATION; OXYGEN THERAPY; PAIN; PALLIATIVE THERAPY; PARADOXICAL DRUG REACTION; PHYSIOTHERAPY; POSITIVE END EXPIRATORY PRESSURE; PSYCHOTHERAPY; PULSE RATE; QUALITY OF LIFE; RESPIRATION DEPRESSION; RESPIRATORY FAILURE; SEDATION; SEIZURE; SIDE EFFECT; SPIRITUAL CARE; STEVENS JOHNSON SYNDROME; SYNCOPE; TERMINAL CARE; THROMBOCYTOPENIA; URINE RETENTION; VOMITING;

CYSTIC FIBROSIS; HUMANS; LUNG TRANSPLANTATION; PALLIATIVE CARE; TERMINAL CARE; WAITING LISTS;

EID: 79958134733     PISSN: 15691993     EISSN: 18735010     Source Type: Journal    
DOI: 10.1016/S1569-1993(11)60007-6     Document Type: Article

References (40)

1. Robinson WM, Ravilly S, Berde C, Wohl ME End of life care in patients with Cystic Fibrosis. Pediatrics 1997, 100:205-209.
2. Mitchell I, Nakielna E, Tullís E, Adain C Cystic Fibrosis. End stage care in Canada. Chest 2000, 118:80-84.
3. Philip J, Gold M, Sutherlands S, et al. End of life care in adult with cystic fibrosis. J Palliat Med 2008, 11:198-203.
4. Sood N, Paradowski LJ, Yankaskas JR Outcomes of intensive unit care in adults with cystic fibrosis. Am J Crit Care Med 2001, 163:335-338.
5. Bartz RR, Love RB, Leverson GE, Will LR, Welter DL, Meyer KC Pre-transplant mechanical ventilation and outcome in patients with cystic fibrosis. J Heart Lung Transplant 2003, 22:433-438.
6. Vedam H, Moriarty C, Torzillo PJ, McWilliam D, Bye PT Improved outcomes of patient with cystic fibrosis admitted to the intensive care unit. J Cyst Fibros 2004, 3:8-14.
7. Texereau J, Jamal D, Choukroun G, et al. Determinants of mortality for adults with cystic fibrosis admitted in Intensive Care Unit: a multicenter study. Respir Res 2006, 7:14-24.
8. Slieker MG, van Gestel JP, Heijerman HG, et al. Outcome of assisted ventilation for acute respiratory failure in cystic fibrosis. Intensive Care Med 2006, 32:754-758.
9. Elizur A, Sweet SC, Huddleston CB, et al. Pre-transplant mechanical ventilation increase short term morbidity and mortality in pediatric patient with cystic fibrosis. J Heart Lung Transplant 2007, 26(2):127-131.
10. Acessed May 15, 2010. http://www.who.int/cancer/palliative/definition/en/.
11. Sawicki GS, Dill EJ, Asher D, et al. Advance care planning in adults with cystic fibrosis. J Palliat Med 2008, 11:1135-1141.
12. Kerem E, Reisman J, Corey M, Canny GJ, Levison H Prediction of mortality in patients with cystic fibrosis. New Engl J Med 1992, 326:1187-1191.
13. Bourke SJ, Doe SJ, Gascoigne AD, Heslop K An integrated model of provision of palliative care to patients with cystic fibrosis. Palliat Med 2009, 23:512-517.
14. Kallet RH The role of inhaled opioids and furosemide for the treatment of dyspnea. Respir Care 2007, 52(7):900-910.
15. Robinson W Palliative care in cystic fibrosis. J Palliat Med 2000, 3(2):187-192.
16. Yankaskas JR, Marshall BC, Sufian B, Simon RH, Rodman D Cystic fibrosis adult care: consensus conference report. Chest 2004, 125(1 Suppl):1S-39S.
17. Stenekes SJ, Hughes A, Grégoire MC, Frager G, Robinson WM, McGrath PJ Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis. J Pain Symptom Manage 2009, 38(6):837-848.
18. Palliative Sedation Protocol. A report of the Standards and Best Practices Committee. Hospice & Palliative Care Federation of MA, April 2004.
19. Ford D, Flume PA Impact of lung transplantation on site of death in cystic fibrosis. J Cyst Fibros 2007, 6:391-395.
20. Knoop C, Dupont LJ Lung Transplantation. Cystic fibrosis Eur Respir Mon 2009, 45:32-45.
21. Elphick HE, Mallory G Oxygen therapy for cystic fibrosis. Cochrane Database Syst Rev 2009, 1:CD003884.
22. Corey M, Edwards L, Levision, Knowles M Longitudinal analysis of pulmonary function decline in patients with cystic fibrosis. J Pediatr 1997, 131:809-814.
23. Sharples L, Hathaway T, Dennis C, Caine N, Higenbottam T, Wallwork J Prognosis of patients with cystic fibrosis awaiting heart and lung transplantation. J Heart Lung Transplant 1993, 12:669-674.
24. 1 as a guide to lung transplant referral in young patients with cystic fibrosis. Pediatr Pulmonol 2000, 30:198-202.
25. 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.
26. Mayer-Hamblett N, Rosenfeld M, Emerson J, Goss CH, Aitken ML Developing cystic fibrosis lung transplant referral criteria using predictors of 2-year mortality. Am J Respir Crit Care Med 2002, 166:1550-1555.
27. Rosenbluth DB, Wilson K, Ferkol T, Schuster DP Lung function decline in cystic fibrosis patients and timing for lung transplantation referral. Chest 2004, 126:412-419.
28. Belkin RA, Henig NR, Singer LG, et al. Risk factors for death of patients with cystic fibrosis awaiting lung transplantation. Am J Respir Crit Care Med 2006, 173:659-666.
29. Adler FR, Aurora P, Barker DH, et al. Lung transplantation for cystic fibrosis. Proc Am Thorac Soc 2009, 6:619-633.
30. Orens JB, Estenne M, Arcasoy S, et al. International guidelines for the selection of lung transplant candidates: 2006 update - a consensus report from the Pulmonary Scientific Council of the International Society for Heart and Lung Transplantation. J Heart Lung Transplant 2006, 25:745-755.
31. Dellon EP, Leigh MW, Yankaskas JR, Noah TL Effects of lung transplantation on inpatient end of life care in cystic fibrosis. J Cyst Fibros 2007, 6:396-402.
32. Lek N, Acerini CL Cystic fibrosis related diabetes mellitus - diagnostic and management challenges. Curr Diabetes Rev 2010, 6(1):9-16.
33. Moran F, Bradley JM, Piper AJ Non-invasive ventilation for cystic fibrosis. Cochrane Database Syst Rev 2009, 1:CD002769.
34. Fauroux B, Burgel PR, Boelle PY, et al. Practice of noninvasive ventilation for cystic fibrosis: a nationwide survey in France. Respir Care 2008, 53:1482-1489.
35. Efrati O, Modan-Moses D, Barak A, et al. Long-term non-invasive positive pressure ventilation among cystic fibrosis patients awaiting lung transplantation. Isr Med Assoc J 2004, 6:527-530.
36. Davis P, Di Sant'Agnese P Assisted ventilation for patients with cystic fibrosis. JAMA 1978, 239:1851-1854.
37. Berlinski A, Fan LL, Kozinetz CA, et al. Invasive mechanical ventilation for acute respiratory failure in children with cystic fibrosis: outcome analysis and case-control study. Pediatr Pulmonol 2002, 34:297-303.
38. Kremer TM, Zwerdling RG, Michelson PH, et al. Intensive care management of the patient with cystic fibrosis. J Intensive Care Med 2008, 23:159-177.
39. Perilongo G, Rigon L, Sainati L Palliative and terminal care for dying children. Proposal for better care. Med Ped Oncol 2001, 37:59-61.
40. Collett L, Lester D The fear of death and the fear of dying. J Psychol 1969, 72:178-179.