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.

12 Reads
  • [Show abstract] [Hide abstract]
    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.
    Progress in Palliative Care 09/2011; 19(5):230-234. DOI:10.1179/1743291X11Y.0000000005
  • [Show abstract] [Hide abstract]
    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.
    Chest 10/2011; 141(4):1010-7. DOI:10.1378/chest.11-1323 · 7.48 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this study was to identify barriers to conducting ACD for children with life-threatening conditions. Physicians and nurses from practice settings where advance care planning typically takes place were surveyed to collect data regarding their attitudes and behaviors regarding ACD. A total of 266 providers responded to the survey: 107 physicians and 159 nurses (54% response rate). The top 3 barriers were: unrealistic parent expectations, differences between clinician and patient/parent understanding of prognosis, and lack of parent readiness to have the discussion. Nurses identified lack of importance to clinicians (P = .006) and ethical considerations (P < .001) as impediments more often than physicians. Conversely, physicians believed that not knowing the right thing to say (P = .006) was more often a barrier. There are also perceived differences among specialties. Cardiac ICU providers were more likely to report unrealistic clinician expectations (P < .001) and differences between clinician and patient/parent understanding of prognosis (P = .014) as common barriers to conducting ACD. Finally, 71% of all clinicians believed that ACD happen too late in the patient's clinical course. Clinicians perceive parent prognostic understanding and attitudes as the most common barriers to conducting ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and skills in addressing these barriers may help health care providers overcome perceived barriers.
    PEDIATRICS 03/2012; 129(4):e975-82. DOI:10.1542/peds.2011-2695 · 5.47 Impact Factor
Show more