END-OF-LIFE CARE IN CYSTIC-FIBROSIS

Objective. End-of-life clinical care in cystic fibrosis (CF) differs s ubstantially from terminal care in childhood cancer. To examine this d ifference, we reviewed the medical care of a cohort of CF patients tre ated at Children's Hospital, Boston, to document the use of preventive , therapeutic, and palliative care in the month preceding death. Patie nts. We reviewed the medical records of 44 patients older than 5 years who died of CF-related respiratory failure for the years 1984 to 1993 . Results. Thirty-eight patients (86%) received opiates for the treatm ent of severe dyspnea and pain; the duration of opiate use varied from less than 1 hour to greater than 1 month. The dose of opiates varied from less than 5 mg per hour to greater than 30 mg per hour. Thirty-th ree patients (75%) continued to receive intravenous antibiotics in the last 12 hours of life; 32 (72%) continued to receive preventive or th erapeutic oral medications in the last 12 hours of life. All patients were designated as do not resuscitate at the time of death; 43 of the patients died in the hospital with I patient dying at home under hospi ce care. Conclusions. The model ol: comfort care developed in childhoo d canter does not adequately describe the combination of preventive, t herapeutic, and palliative care given at the end of Life for CF at our institution. The majority of CF patients continued to receive intrave nous antibiotics and/or oral vitamin preparations while being treated with opiates for terminal pain and dyspnea. Small doses of opiates see m to be effective in the treatment of the pain and dyspnea at the end of life in CF.