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

Overview

Journal J Pain Symptom Manage

Publisher Elsevier

Specialties Critical Care
Pharmacology
Psychiatry

Date 2010 Sep 11

PMID 20828981

Citations 9

Authors

Elisabeth P Dellon

Mitchell D Shores

Katherine I Nelson

Joanne Wolfe

Terry L Noah

Laura C Hanson

Affiliations

Soon will be listed here.

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.

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References

Sawicki G, Sellers D, McGuffie K, Robinson W . Adults with cystic fibrosis report important and unmet needs for disease information. J Cyst Fibros. 2007; 6(6):411-6. DOI: 10.1016/j.jcf.2007.03.004. View

DAVIS P, di SantAgnese P . Assisted ventilation for patients with cystic fibrosis. JAMA. 1978; 239(18):1851-4. View

Berlinski A, Fan L, Kozinetz C, Oermann C . Invasive mechanical ventilation for acute respiratory failure in children with cystic fibrosis: outcome analysis and case-control study. Pediatr Pulmonol. 2002; 34(4):297-303. DOI: 10.1002/ppul.10159. View

Efrati O, Kremer M, Barak A, Augarten A, Reichart N, Vardi A . Improved survival following lung transplantation with long-term use of bilevel positive pressure ventilation in cystic fibrosis. Lung. 2007; 185(2):73-9. DOI: 10.1007/s00408-006-0036-x. View

Noone P, Egan T . Cystic fibrosis: when to refer for lung transplantation-is the answer clear?. Am J Respir Crit Care Med. 2002; 166(12 Pt 1):1531-2. DOI: 10.1164/rccm.2209011. View

Mitchell I, Nakielna E, Tullis E, Adair C . Cystic fibrosis. End-stage care in Canada. Chest. 2000; 118(1):80-4. DOI: 10.1378/chest.118.1.80. View

Accurso F . Update in cystic fibrosis 2005. Am J Respir Crit Care Med. 2006; 173(9):944-7. PMC: 2662914. DOI: 10.1164/rccm.2601006. View

Yankaskas J, Mallory Jr G . Lung transplantation in cystic fibrosis: consensus conference statement. Chest. 1998; 113(1):217-26. DOI: 10.1378/chest.113.1.217. View

Singer P, Martin D, Lavery J, Thiel E, KELNER M, Mendelssohn D . Reconceptualizing advance care planning from the patient's perspective. Arch Intern Med. 1998; 158(8):879-84. DOI: 10.1001/archinte.158.8.879. View

10.

Noone P . Non-invasive ventilation for the treatment of hypercapnic respiratory failure in cystic fibrosis. Thorax. 2007; 63(1):5-7. DOI: 10.1136/thx.2007.086710. View

11.

Song M, De Vito Dabbs A . Advance care planning after lung transplantation: a case of missed opportunities. Prog Transplant. 2006; 16(3):222-5. DOI: 10.1177/152692480601600306. View

12.

Fried T, OLeary J . Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning. J Gen Intern Med. 2008; 23(10):1602-7. PMC: 2533358. DOI: 10.1007/s11606-008-0748-0. View

13.

Dellon E, Leigh M, Yankaskas J, Noah T . Effects of lung transplantation on inpatient end of life care in cystic fibrosis. J Cyst Fibros. 2007; 6(6):396-402. PMC: 4394360. DOI: 10.1016/j.jcf.2007.03.005. View

14.

Ford D, Flume P . Impact of lung transplantation on site of death in cystic fibrosis. J Cyst Fibros. 2007; 6(6):391-5. DOI: 10.1016/j.jcf.2007.03.002. View

15.

Yankaskas J, Marshall B, Sufian B, Simon R, Rodman D . Cystic fibrosis adult care: consensus conference report. Chest. 2004; 125(1 Suppl):1S-39S. DOI: 10.1378/chest.125.1_suppl.1s. View

16.

Elizur A, Sweet S, Huddleston C, Gandhi S, Boslaugh S, Kuklinski C . Pre-transplant mechanical ventilation increases short-term morbidity and mortality in pediatric patients with cystic fibrosis. J Heart Lung Transplant. 2007; 26(2):127-31. DOI: 10.1016/j.healun.2006.11.597. View

17.

Sawicki G, Dill E, Asher D, Sellers D, Robinson W . Advance care planning in adults with cystic fibrosis. J Palliat Med. 2008; 11(8):1135-41. PMC: 2982708. DOI: 10.1089/jpm.2008.0051. View

18.

Madden B, Kariyawasam H, Siddiqi A, Machin A, Pryor J, Hodson M . Noninvasive ventilation in cystic fibrosis patients with acute or chronic respiratory failure. Eur Respir J. 2002; 19(2):310-3. DOI: 10.1183/09031936.02.00218502. View

19.

Liou T, Adler F, Cox D, Cahill B . Lung transplantation and survival in children with cystic fibrosis. N Engl J Med. 2007; 357(21):2143-52. PMC: 2522236. DOI: 10.1056/NEJMoa066359. View

20.

Robinson W, Ravilly S, Berde C, Wohl M . End-of-life care in cystic fibrosis. Pediatrics. 1997; 100(2 Pt 1):205-9. DOI: 10.1542/peds.100.2.205. View