Caregiver Perspectives on Discussions About the Use of Intensive Treatments in Cystic Fibrosis

• Published in: Journal of pain and symptom management 2010-12, Vol.40 (6), p.821-828
• 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; advance care planning; Aged; Aged, 80 and over; Anesthesia & Perioperative Care; Biological and medical sciences; Caregivers; Carers; Child; communication; Cystic fibrosis; Cystic Fibrosis - therapy; Decision Making; Doctors; Errors of metabolism; Humans; Intensive treatment; Medical sciences; Metabolic diseases; Middle Aged; Miscellaneous hereditary metabolic disorders; Pain Medicine; Palliative Care - methods; patient preferences; Pharmacology. Drug treatments; Quality of Life; Treatment preferences
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2010.03.021

Abstract Context Intensive treatments intended to sustain life are often used for patients with advanced cystic fibrosis (CF). There are no guidelines for selecting patients whose survival and quality of life may be enhanced by such treatments or for communication with patients and caregivers about possible treatment outcomes. Objectives We aimed to describe caregivers’ perspectives on decision making for the use of intensive treatments for patients with advanced CF lung disease. Methods We conducted semi-structured interviews with 36 caregivers of 36 patients who died of CF about treatment preference discussions and solicited recommendations for improving discussions. Results Twenty (56%) patients received intensive treatments during the last week of life. Twenty-two (61%) caregivers reported ever having discussed intensive treatment preferences with a physician, and 17 (77%) of these discussions were initiated during an acute illness. Only 14 (39%) of all patients participated. Caregivers expressed less certainty about consistency of treatments with patient preferences when patients did not participate. Twenty-nine (81%) caregivers endorsed first discussing treatment preferences during a period of medical stability. Conclusions Discussions about preferences for the use of intensive treatments for patients with CF often take place during episodes of acute illness and may be delayed until patients themselves are too ill to participate. Bereaved caregivers suggest first addressing intensive treatment preferences during a stable period so that patient preferences are understood and unwanted treatments are minimized.