UNDERSTANDING ATTITUDES ABOUT ADVANCE CARE PLANNING AND INFORMATION NEEDS IN PATIENTS WITH CYSTIC FIBROSIS AND THEIR CAREGIVERS

Purpose: To obtain input from cystic fibrosis patients and caregivers during early stage design of a decision aid for advance care planning for cystic fibrosis.

Method: We conducted: 3 focus groups (2 patient/1 caregiver), follow-up phone interviews with 12 focus group participants (9 patients/3 caregivers), and 6 inpatient interviews. We sought information from participants on: a) prior conversations with clinicians about advance care planning; b) existing knowledge about treatments such as lung transplant and mechanical ventilation/intubation; and c) important information needed for decision making. All focus groups and interviews were audio recorded and transcribed for thematic analysis.

Result: Qualitative analysis shows the majority of patients have had conversations with clinicians about lung transplant, but few have discussed intubation. Several participants felt they did not want to discuss intubation unless they knew with certainty that they would need it. Most patients knew what lung transplant involved, but only those who had experienced intubation knew anything about intubation. Most patients did not want intubation if it was permanent. Most patients viewed lung transplant favorably and would consider it, but a small number of participants stated they would not consider it. When asked what information participants would need in order to feel they were making an informed decision regarding advanced care, some participants felt prognostic estimates were necessary while others felt it was a bad idea to ask about survival because “by asking the question ‘will I live’, you’re basically saying to yourself, ‘I may die’, and that’s the worst thing you could do to yourself.”  Most patients felt it would be helpful to hear other people’s experiences with lung transplant and intubation, with several participants stating that they follow blogs by lung transplant survivors.

Conclusion: Most clinicians discuss lung transplant but not intubation with CF patients. This may be due to prognostic uncertainty on the part of both clinicians and patients regarding which patients may end up needing it. It may also mean that clinicians avoid conversations about intubation because they are associated with the idea that nothing more can be done for the patient. Finally, the fact that there is a great deal of variation in peoples’ desires to hear prognostic estimates suggests that care should be taken when assessing whether to convey such information to a patient.