scholarly journals End of life care in cystic fibrosis – are we offering a good service?

2010 ◽  
Vol 9 ◽  
pp. S66
Author(s):  
R. Rashid ◽  
D. Honeybourne ◽  
E.F. Nash ◽  
J.L. Whitehouse
Keyword(s):  
Cystic Fibrosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Good Service

End-of-Life Care in Cystic Fibrosis: Comparing Provider Practices Based on Lung Transplant Candidacy

2020 ◽  
Vol 23 (12) ◽  
pp. 1606-1612
Author(s):  
Allison V. Lange ◽  
Ali Rueschhoff ◽  
Stephanie Terauchi ◽  
Leah Cohen ◽  
Joan Reisch ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Lung Transplant ◽  
Life Care ◽  
Provider Practices

End-of-Life Care in Cystic Fibrosis

PEDIATRICS ◽  
1997 ◽  
Vol 100 (2) ◽  
pp. 205-209 ◽  
Author(s):  
W. M. Robinson ◽  
S. Ravilly ◽  
C. Berde ◽  
M. E. Wohl
Keyword(s):  
Cystic Fibrosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals Effects of lung transplantation on inpatient end of life care in cystic fibrosis

2007 ◽  
Vol 6 (6) ◽  
pp. 396-402 ◽  
Author(s):  
Elisabeth P. Dellon ◽  
Margaret W. Leigh ◽  
James R. Yankaskas ◽  
Terry L. Noah
Keyword(s):  
Cystic Fibrosis ◽  
Lung Transplantation ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals End of life care for adult cystic fibrosis patients: Facilitating a good enough death

2005 ◽  
Vol 4 (4) ◽  
pp. 249-257 ◽  
Author(s):  
Elizabeth Chapman ◽  
Annette Landy ◽  
Angela Lyon ◽  
Charles Haworth ◽  
Diana Bilton
Keyword(s):  
Cystic Fibrosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

End-of-life care in cystic fibrosis

1998 ◽  
Vol 4 (6) ◽  
pp. 332-336 ◽  
Author(s):  
Mark R. Tonelli
Keyword(s):  
Cystic Fibrosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals 431 Audit of End-of-Life care in Cystic Fibrosis in Australia

2006 ◽  
Vol 5 ◽  
pp. S96
Author(s):  
E. Finlayson ◽  
M. Gold ◽  
J. Philip ◽  
S. Sutherland ◽  
C. Ware ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

How good is end of life care for patients dying with cystic fibrosis?

2020 ◽  
pp. bmjspcare-2020-002490
Author(s):  
Mary Miller ◽  
Rachel Lee ◽  
Sharon Yates ◽  
Hannah C Billett ◽  
Stephen Bourke ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Glucose Monitoring ◽  
National Average ◽  
Blood Glucose Monitoring ◽  
Life Care ◽  
National Audit ◽  
National Data ◽  
Intravenous Antibiotics

BackgroundCystic Fibrosis (CF) is a life-limiting illness. Audit of the care of patients dying of CF has not been published to date.MethodsNewcastle and Oxford teams adapted the National Audit of Care at the End of Life and agreed additional questions that were particularly pertinent for patients dying as a consequence of their CF. Data were extracted and analysed for 15 patients.ResultsOn recognition that the patient was dying, the CF teams were less good at reviewing the need for physiological observations (50% vs national 70%) but better at reviewing the need for capillary blood glucose monitoring, oxygen support and intravenous antibiotics compared with the national average for all patients.On recognition that the patient was dying, the CF teams were better at assessing pain (87% vs national 80%) and breathlessness (93% vs national 73%), but less good at assessing nausea and vomiting (47% vs national 74%).There was documented evidence that 100% of families and 64% of patients were aware that the patient was at risk of dying.ConclusionComparing care of this sample of patients dying with CF against the national data is a useful first step in understanding that many aspects of care are of high quality. This audit identifies the need to offer earlier conversations to patients as their voices may be missing from the conversation. Undertaking a national audit would provide a more reliable and a fuller picture.

scholarly journals ePS02.4 Perceptions of end of life care in adult patients with cystic fibrosis

2016 ◽  
Vol 15 ◽  
pp. S39-S40
Author(s):  
F. Cathcart ◽  
H. Parrott ◽  
J. Ross ◽  
A.M. Jones ◽  
N.J. Simmonds
Keyword(s):  
Cystic Fibrosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Adult Patients ◽  
Life Care
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