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Cystic fibrosis (CF) is a rare congenital disease responsible for respiratory infections, pneumothorax and chronic respiratory failure. Median life expectancy is increasing and recently reached 50 years. Since it is incurable (except with a lung transplant), patients with CF may benefit from early palliative care team (PCT) involvement, which should partner with CF physicians. We report a case of CF enrolled by a PCT and discuss the benefits of collaboration between PCT and CF teams.
A single 35-year-old man was followed up every 3 months in consultation by a cystic fibrosis reference centre. Respiratory failure was severe (forced expiratory volume in one second=20%). In 2017, he refused lung transplant because he found no meaning in extending life. He even expressed a wish to hasten death and had inquired about euthanasia or assisted suicide in Belgium. He explained that he never thought he could live so long. As a child, his paediatric CF physician told him his illness would be rapidly life-threatening. Consequently, he never invested in his personal or professional …
Contributors TB, SV and FC wrote the article. TF, JM and FC were involved in the patient’s course.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.