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

Division of Pulmonology, Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina 27599-7217, USA.
Journal of pain and symptom management (Impact Factor: 2.8). 12/2010; 40(6):821-8. DOI: 10.1016/j.jpainsymman.2010.03.021
Source: PubMed


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.
We aimed to describe caregivers' perspectives on decision making for the use of intensive treatments for patients with advanced CF lung disease.
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.
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.
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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    ABSTRACT: Cystic fibrosis (CF) has been transformed in the twentieth century from a fatal disease of infants to a chronic, life-limiting illness of children, adolescents, and adults. The increase in life expectancy has been accompanied by an increase in both chronic and acute physical and psychological symptoms. Careful attention to symptom assessment and treatment should now be a routine aspect of care for children and adults with CF. Although life expectancy has increased dramatically, children and adults with CF will still die before their unaffected peers, and careful attention to issues in end-of-life care is still a part of CF care, with the often complicating factor of lung transplantation as a relatively recent arrival. This review will focus on a symptom-based approach to CF care for children and adults throughout the lifespan.
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    ABSTRACT: Many patients with advanced cystic fibrosis (CF) lung disease receive intensive treatments such as noninvasive and invasive mechanical ventilation for respiratory failure after little or no communication with physicians. Using surveys and follow-up interviews, physicians at two major CF care centers reported their practices for discussing intensive treatment preferences with patients with CF and about barriers and facilitators to communication. Surveys were completed by 30 (88%) and 26 (76%) of 34 eligible CF physicians who provide care for children (60%), adults (23%), or both (17%). Respondents described variable timing and content of discussions. They identified patient/family factors such as denial of disease severity, optimistic expectations of treatment outcomes, inability of ill patients to participate in discussions, and family disagreements about treatments as primary barriers to discussions. They also acknowledged physician factors, including concern for taking away hope and uncertainty about when to address treatment preferences. Patient/family factors were also the most common facilitators identified, particularly disease severity and inquiry about intensive treatments. They recommended: (1) developing standards for communication, (2) offering training in communication for physicians, (3) creating decision support tools for patients and families, and (4) using the multidisciplinary CF care team to facilitate communication. CF physicians describe numerous patient/family factors barriers to communicating about intensive treatments for respiratory failure. They recommend changing physician and organizational factors to improve practice and promote effective communication. Innovation in clinical training, team roles, and decision support may prompt changes in practice standards.
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