Walter M Robinson1. 1. Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tennessee, USA. walter.robinson@vanderbilt.edu
Abstract
PURPOSE OF REVIEW: This review will examine what is now known about palliative and end-of-life care for cystic fibrosis (CF) patients, including the changing demographics and context of such care, and then outline a brief research agenda to guide further work in this area. RECENT FINDINGS: We have now entered an era of more invasive end-of-life care in CF, due in part to changes in the demographics of death in CF and in part to the wider pursuit of lung transplantation. Recent single-center studies suggest that lung transplant listing changes the location and intensity of end-of-life care and complicates end-of-life care decision-making for the patient, family, and clinician. Further studies have demonstrated a high burden of daily symptoms in CF, especially pain and depression. In addition, there is evidence of an increasing burden related to the expanding daily treatment regimen for CF. SUMMARY: The time has come for national, multicenter studies of palliative and end-of-life care practices in CF, followed by systematic evaluation of the efficacy of existing interventions. Studies of the symptoms and treatment burdens in CF should continue with an emphasis on interventions to improve health-related quality of life throughout the lifespan of children and adults with CF.
PURPOSE OF REVIEW: This review will examine what is now known about palliative and end-of-life care for cystic fibrosis (CF) patients, including the changing demographics and context of such care, and then outline a brief research agenda to guide further work in this area. RECENT FINDINGS: We have now entered an era of more invasive end-of-life care in CF, due in part to changes in the demographics of death in CF and in part to the wider pursuit of lung transplantation. Recent single-center studies suggest that lung transplant listing changes the location and intensity of end-of-life care and complicates end-of-life care decision-making for the patient, family, and clinician. Further studies have demonstrated a high burden of daily symptoms in CF, especially pain and depression. In addition, there is evidence of an increasing burden related to the expanding daily treatment regimen for CF. SUMMARY: The time has come for national, multicenter studies of palliative and end-of-life care practices in CF, followed by systematic evaluation of the efficacy of existing interventions. Studies of the symptoms and treatment burdens in CF should continue with an emphasis on interventions to improve health-related quality of life throughout the lifespan of children and adults with CF.
Authors: Elisabeth P Dellon; Melissa Basile; Mara R Hobler; Anna M Georgiopoulos; Elaine Chen; Jessica Goggin; Christopher H Goss; Sarah E Hempstead; Albert Faro; Dio Kavalieratos Journal: J Palliat Med Date: 2020-02-05 Impact factor: 2.947
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Authors: Steven Conway; Ian M Balfour-Lynn; Karleen De Rijcke; Pavel Drevinek; Juliet Foweraker; Trudy Havermans; Harry Heijerman; Louise Lannefors; Anders Lindblad; Milan Macek; Sue Madge; Maeve Moran; Lisa Morrison; Alison Morton; Jacquelien Noordhoek; Dorota Sands; Anneke Vertommen; Daniel Peckham Journal: J Cyst Fibros Date: 2014-05 Impact factor: 5.482