ABSTRACT

Palliative care is dened by the World Health Organization (WHO) as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suering by means of early identication and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. It is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life … and includes those investigations needed to better understand and manage distressing clinical complications.”1 ere is emerging evidence for the benecial role of a palliative care team in cystic brosis (CF), either working directly with the patient and family or indirectly through support and advice to professionals.2,3 Based on this and in accordance with the WHO denition, the introduction of palliative care early in the illness trajectory of patients with CF should be promoted. Most studies, however, have focused on end of life care and advance care planning for adults4-7 and there has been limited exploration of the early involvement of palliative care services.