Table 1 Sample questions (full questionnaire upon request) Additional file 1
Areas of investigation | Sample questions |
|---|---|
Decisions and practices in antenatal period | - Where applicable, who is involved in the decision-making process regarding advanced decisions to actively manage or not an extremely premature baby at birth? - In your centre, at which gestational age may a very premature baby be actively managed? |
Decisions and practices in perinatal period | - Which anamnestic criteria are considered when making the decision to actively manage an extremely premature baby? Where applicable, are the parents invited to send a formal consent form to withhold or withdraw treatment? |
Decisions and practices in postnatal period | - Do you have a written protocol or a standardised procedure to ensure the baby’s comfort in the context of palliative care? - In the context of a palliative care pathway, do you ever practise “active” end-of-life (use of analgesic and/or sedative drugs at above therapeutic doses)? |
Opinions regarding standardization of and legislation on end-of-life care | - In making end-of-life decisions, have you ever experienced fear of litigation? (possible responses: Yes, I have; Yes, it could happen; No; I don’t know) - Would you like “active” end-of-life practices in situations of extreme prematurity to be ALLOWED by a protocol or a law? (possible responses: Yes; No; Uncertain) |