Developmental delay - sever emphysema - decortication

Question 1

34Y w intellectually disabled with severe loculated emphysema. Causing significant resp compromise.
She terrified with needles. ID team thinks decortication to control infection.
Med team - no appropriate for major operation.

Answer 1

Mum - experienced with hospital
Do not speak down to her
may advocate strongly for her daughter
Include her in plan of care. How to address fear of needles.

Question 2

explain the medical situation & the proposed sx
Explore mum’s perception of daughter best interest
Provide clear explanation of the legal situation
Other potential decision makers
Support mum in a difficult situation
Work to formulate a decision in collaboration with mum

Answer 2

Do u understand what has been happening to mum
Has anyone explained abt this infection
THERE HAS BEEN SOME TALK ABT SX TO TRY TO FIX THIS UP. HAS THIS BEEN EXPLAINED TO U
HW DO U THINK UR DAUGHTER WOULD COPE WITH SX AND THE TUBES IN HER CHEST
HOW DO U THINK SHE IS COPING NOW
THIS IS VERY DIFFICULT. WE NEED TO DO THE RIGHT THING. UNFORTUNATELY BOTH OF THE CHOICES R BAD.