Family Caregiver Perspectives on Symptoms and Treatments for Patients Dying From Complications of Cystic Fibrosis

• Published in: Journal of pain and symptom management 2010-12, Vol.40 (6), p.829-837
• Main Authors: Dellon, Elisabeth P., MD, MPH, Shores, Mitchell D., BA, Nelson, Katherine I., MPH, Wolfe, Joanne, MD, MPH, Noah, Terry L., MD, Hanson, Laura C., MD, MPH
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Aged; Aged, 80 and over; Anesthesia & Perioperative Care; Anorexia nervosa; Biological and medical sciences; Carers; Child; Cystic fibrosis; Cystic Fibrosis - complications; Cystic Fibrosis - therapy; Dying people; Errors of metabolism; Female; Humans; Interviews as Topic; Male; Medical sciences; Metabolic diseases; Middle Aged; Miscellaneous hereditary metabolic disorders; Opioids; Pain Medicine; Palliative Care - methods; palliative treatments; Pharmacology. Drug treatments; Quality of Life; Respiratory Insufficiency - etiology; symptom burden; symptom prevalence; Symptoms
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2010.03.024

Abstract Context Most patients with advanced cystic fibrosis (CF) die from respiratory failure and experience distressing symptoms as lung disease progresses. Little has been reported about symptom management and the continuation of disease-specific treatments near the end of life for patients with CF. Objective We aimed to describe symptom prevalence, symptom management, and frequency of use of disease-specific treatments for patients dying from complications of CF. Methods We conducted semistructured interviews about end-of-life care in CF with bereaved family caregivers and asked questions about symptoms and treatments. Results Twenty-seven caregivers answered questions about symptoms and treatments. Caregivers reported that distressing symptoms were common during the last week of life, including dyspnea (100%), fatigue (96%), anorexia (85%), anxiety (74%), pain (67%), and cough (56%). Most caregivers felt that symptom control was “somewhat good.” Many reported that medical providers “did the best they could” to manage symptoms but four (15%) recalled no physician inquiry about symptoms. Caregivers expressed beliefs that symptoms could not be controlled and described concerns about side effects and potential for hastening death with the use of opioids and anxiolytics. Patients received numerous disease-specific treatments, and caregivers described many of them as uncomfortable but necessary. Conclusions Distressing symptoms are common in dying CF patients, and disease-specific treatments also cause discomfort. Many family caregivers have low expectations for symptom control. This exploratory research can be used to inform clinical interventions to improve symptom management for patients with advanced CF.