Communication, Comfort, and Closure for the Patient With Cystic Fibrosis at the End of Life: The Role of the Bedside Nurse

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Abstract

Cystic fibrosis is a life-threatening genetic disease that causes persistent lung infections and progressively limits the ability to breathe. The median predicted survival age of the patient with cystic fibrosis is 40 years. In the terminal care of the patient with cystic fibrosis, the role of the bedside nurse is critical in providing seamless, interdisciplinary care in order to promote a “good death” and ensure that the patient’s and family’s wishes are respected at the end of life (EOL). Key components of the bedside nurse’s role in EOL care for the cystic fibrosis patient include the facilitation of interdisciplinary patient/family–centered communication, the provision of comfort to ease suffering from breathlessness and pain, and the promotion of patient and family closure within the family and among caregivers. This case study depicts the critical role of the bedside nurse in a young female patient with cystic fibrosis at the EOL to honor patient and family wishes and promote a peaceful, dignified death.

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