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CF healthcare workers feel unprepared in providing suitable end of life care and desire more education: Results of a nationwide survey

Jessica Goggin, Rubin I. Cohen

Journal of Cystic Fibrosis, Volume 15, Issue 1, January 2016, Pages 85-89



Little is known about the depth of knowledge and preparedness of CF caregivers in delivering end of life and palliative care to CF patients and families.


Nationwide survey questionnaires for CF care providers using the CF Foundation Listserv electronic web-based tool.


The majority of non-physician CF care providers (55%) had more than 15 years of experience in their discipline and 84% of physician had greater than 15 years of experience. The majority reported that they felt “somewhat” or “very” involved in palliative or end of life care in their current role. Yet, when asked whether they felt adequately prepared to deliver palliative and end of life care, only 18% reported that they were “fully prepared” and 45% felt that they were only “minimally” or “not” prepared. Further, only one third of respondents received more than 10 h of education in general palliative or end-of-life care, while only 10% had received more than 10 h of education specific to CF end of life care. The majority (73%) of CF healthcare providers preferred more education specific to CF end of life care.


CF healthcare providers are involved in CF end of life issues but a fair number did not understand their role and felt inadequately prepared in delivering suitable end of life and palliative care. Many desired more education in the provision of such care.

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