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. Author manuscript; available in PMC: 2020 May 1.
Published in final edited form as: Congenit Heart Dis. 2018 Dec 21;14(3):403–409. doi: 10.1111/chd.12735

Table 5:

Barriers and Facilitators to Talking About Care Preferences

Barriers to Talking About Care Preferences N (%)
I have not felt sick enough to talk with my doctor about end-of-life care 60 (42)
I’m not sure which doctor would be taking care of me if I were to get very sick 42 (29.4)
I would rather concentrate on staying alive than talk about death 42 (29.2)
I’m not sure which doctor would be taking care of me if I were to get very sick 33 (22.8)
My ideas about the kind of medical care I want may change 32 (22.4)
I don’t like to talk about getting very sick 30 (20.8)
I don’t know what kind of care I would want if I were to get very sick 23 (15.9)
My doctor never seems to have the time to talk about issues like end-of-life care 19 (13.3)
I feel that talking about death can bring death closer 13 (9.1)
I have a living will, and that means I don’t need to talk with my doctor about the care I would want if I were too sick to speak for myself 7 (5)
Facilitators for Talking About Care Preferences N (%)
I worry about the quality of my life in the future 80 (57.6)
I worry that I could be a burden on my friends and family if I were to become very sick 76 (55.1)
I have had family or friends who have died so it is easier to talk about 68 (48.9)
I have been very sick, so it is easier to talk about 59 (42.8)

Bold= identified by participants as the most important factor