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PEDIATRICS Vol. 100 No. 2 August 1997, pp. 205-209

End-of-Life Care in Cystic Fibrosis

Received Dec 18, 1995; accepted Jun 26, 1996.

Walter M. Robinson*, Dagger , Sophie Ravilly*, Dagger , Charles BerdeDagger , §, and Mary Ellen Wohl*, Dagger

From the * Division of Pulmonary Medicine and the Departments of Dagger  Pediatrics and § Anesthesia, Children's Hospital and Harvard Medical School, Boston, Massachusetts.

Objective.  End-of-life clinical care in cystic fibrosis (CF) differs substantially from terminal care in childhood cancer. To examine this difference, we reviewed the medical care of a cohort of CF patients treated at Children's Hospital, Boston, to document the use of preventive, therapeutic, and palliative care in the month preceding death.

Patients.  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 treatment 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-three patients (75%) continued to receive intravenous antibiotics in the last 12 hours of life; 32 (72%) continued to receive preventive or therapeutic 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 1 patient dying at home under hospice care.

Conclusions.  The model of comfort care developed in childhood cancer does not adequately describe the combination of preventive, therapeutic, and palliative care given at the end of life for CF at our institution. The majority of CF patients continued to receive intravenous antibiotics and/or oral vitamin preparations while being treated with opiates for terminal pain and dyspnea. Small doses of opiates seem to be effective in the treatment of the pain and dyspnea at the end of life in CF.

Key words: cystic fibrosis, palliative care, terminal care.


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