Case Discussion

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DOC015.pdf

CA SE 4 hospital’s club culture.” BMJ,

(2013). Report of the Mid Staf

b/ic inquiry United Kingdom: The onsent an isc osure in Pediatric Heart Surgery

The Story of James Mannix (United States)

IVIarv El/eu Ala ii nix

Editors’ Note .\ L Li,’:,, IL,,; a .\ i” / icr jail’; a,? \ I jchac/ lea i-ned/to “lii pre nat, i/-boa I’, it?; rht: their ‘urtifr child. J.imi. ba? a high chance cf being born ‘ith a hear, c/eke! - -a

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si’ ‘A i/f ‘ ‘ 7th Pt, n it,d d t tvn of no’ ti r tat,on ilthouçrh ht <hA c/ sit c/il t,iI’t’e i /‘r<h oa,’ihiht’ cI errol: Iii!,? cases ella’,’ not he detectai’/e pu-enatalh’. an,? sc;,’e people ‘mp nor sho:: sv;;:pto;’:c until mu/die age. In more severe case,,, in infint ‘na’, appeir 1-c,,/d’r a’tif cec-er,,/,la’,’c i/Icr bi,yh, c,’he,, the closin’, cf/he ,Ine/us arteriocic can /t 7,/to / a ni/id Ho 1/10 h, nt fat/itut at?? shod i hit mu d C, n,lmn t 2009 Gal / ii 2008;

47

SECTION I:Patientcare

I CASE

4:Consent and DlscIoure

In Pediatric

Heart Surgery

u/it’ treat

“ c iii/O

) an

ill/m it

diaç-noi cc/u i/h

ao rtie

coarc/at;on is

In g

eri. ;V

— zshon,s

w ith

an u n clear

diagnosis iiie

y be

observed in

the hospital fir

several d a y s ,

w hereas

a baby

w ith

a confirm

ed dm

ç’nosis is

likely to

he stabilized

on m

edication p ro

stag lan

d in

) u

n /il surgery

can h ep

er/b rn

ied ‘the

repair ofti

discrete coarciation,

like the

one/am es

hail. ii

usually accom

plished th

ro n

çh an

incision in

the left

side n //h

e chest

ca/let/a p

o stero

lat- rdlthoracotom

y iii,/

lot’s not

c’iitciil card io

p u

lm o

n ary

bypass. In

m ore

eom plex/sresenta—

tio ,is,

the child

m ay

he p

laced on

ecirdiopulnioiiari’ bypcus

to ;‘p

a ir

the coarctation

i?,ld iceo

m p

cim n

’in ,ç

h e a rt

de/e,-Lc iii

a sin

g /c

’ o p e ra

tio n

th ro

u g h

a stern

al incision

M o

rtality in

sum :crieai

rep air

of ao

rtic eoa,itcition

is g e n e ra

l/v ;-e

p o

r/e d

to be

low (less

th ai,

1% )

(R o.centhal,

2 0 0 5 ).

L E

A R

N IN

G O

B JE

C T

IV E

S

A fter

coniplering this

case stu

d t;

you w

ill be

able to:

1. E

xam ine

the risk

m an

ag em

en t

issues around

prenatal diagnosis

o f

m ajor

cardiac tick

ers.

2. R

ecognize how

co m

m u

n icatio

n betw

een parents

and providers

can be

efftctive or

ineffective in

en su

rin g

full u n d erstan

d in

g o

f the

ease ram

ifications.

3. O

u tlin

e the

risks fbr

surgical procedures

in infants.

4. I)iscuss

how effective

and au

th en

tic co

n sen

t and

co m

m u

n icatio

n betw

een providers

and patients

and their

fiunilies can

contribute to

reliable hcalthcare

outcom es.

A B

ig B

aby Jam

es w

as delivered

at 39

w eeks

in a

planned delivery,

lie w

as the

largest o f

m i’

babies, w

eighing 8

pounds, 4

ounces and

m easuring

21.5 inches.

lie had

a raspy

cry, a

full head

o f

hair, and

very light

eyebrow s.

‘the obstetric

team w

as surprised

th at

he w

as so

big because

babies w

ith h eart

defects tend

to be

sm all.

T hey

im m

ediately took

him to

the w

arm in

g table

to assess

him and

they told

m e

he looked

great. fIe

had h ig

h A

P G

A R

1 scores

o f

9 and

10, h u t

because he

had the

prenatal diagnosis

of coaretation

o f

the aorta

they w

anted

‘Ilic A

ltr\ R

s c o r e

is d eterm

in ed

by ev

alu atin

g the

n ew

b o rn

baby on

five criteria

ia sc

a le

from 0

to 2,

th en

su m

m in

g up

th e

live values

o b

tain ed

, T

he resulting

A P

( A

R score

ranges Irom

0 to

10. T

he live

criteria ire

A p

p earan

ce. Pulse,

G rim

ace, A

ctivity, anti

R esp

iratio n

.

to perform

an echocardiogram

in the

neonatal intensive

care u n it

(N IC

U ).

W e

w ere

told th

at as

soon as

they w

ere finished

w e

w ould

see our

baby.

F our

hours w

ent by.

F inally

m y

husband found

a w

heelchair, put

m e

in it,

and w

e m

ade our

w ay

over to

the N

IC U

. A

s w

e approached

the N

IC U

w e

saw an

isolette heading

out. it

w as

our son.

T hey

w ere

about to

transfer him

to the

pediatric heart

center w

ithout telling

us. A

t th

at point, w

e had

som e

discussion w

ith the

pediatric cardiologist

w ho

confirm ed

th at

there w

as a

discrete,or sim

ple, coarctation

o f

the aorta. Jam

es w

as breathing

w ell

on room

air and

he w

as not

in urgent

need o

fan v

th in

g .’Ih

e physician

told u

,” If

he w

ere m

y ch

ild ,I

w ould

w ant

him dow

n there,”

referring to

the pediatric

heart center,

so off

he w

e n t.’

u n d erstan

d in

g w

as th

at this

w as

only for

m onitoring.

Is T

h ereA

n y

th in

g W

e S

hould K

n o w

? I

jo in

ed Jam

es at

the heart

center a

day later.

lie w

as on

room air.

H e

w as

eating from

a bottle.

FTc w

as not

in distress.

T hat

n ig

h t

m y

husband signed

a consent

form for

repair o f

the aorta

coarctation. O

u r

u n d erstan

d in

g w

as th

at this

m ean

t either

a pharm

aceutical in

terv en

tio n

like digoxin

or possibly

som e

kind o f

cath eterizatio

n to

balloon open

the narrow

ing o f

the aorta,

w hich

w as

terrif’in g

enough in

itself. ‘The

surgeon w

as a

w o rld

-fam o u s

pediatric h eart

surgeon. I

rem em

ber asking

him specifically,

“Is there

anything besides

general anesthesia

th at

you w

ill be

doing th

at w

e should

know about?”

lie replied,

“N o,

n o th

in g

at all.”

W e

handed Jam

es off

and w

aited. L

ater th

at day

w hen

w e

finally saw

him he

w as

intubated. lie

had a

scar ru

n n

in g

dow n

the m

iddle o f

his chest.

H e

had tubes

com ing

o u t

o f

the side

o f

him .

N o

one had

told m

e or

prepared m

e th

at this

w as

a condition

th at

I could

possibly see

m y

son in

at 2

days o f

age. I

felt stupid.

I did

not q

u e s

tion it,

but did

ask, “W

h at

now ?”

‘The nurse

said, “X

’V ell,

the next

tim e

you com

e hack

to see

him you

w ill

probably be

able to

breast- feed

him ,

because w

e are

going to

take the

b reath

in g

tube out.”

SECTION I: PatientCare

I CASE

4:Consentand Disclosure

In Pediatric HeartSurgery

A t

th at

tim e

w e

had to

leave because

w e

w ere

not allow

ed to

he in

the pediatric

cardiac intensive

care unit

(P C

IC U

) u n til

visiting hours.

Ihey w

ere very

prescriptive about

w hen

w e

could be

w ith

our son.

It w

as late

in the

day, b

u t

visiting hours

did n o t

begin until

the end

of rounds

at 8:00

p.m .

A t

7:40 I

rem em

ber looking

at the

clock and

know ing

th at

I needed

to he

w ith

him right

th en

and could

not w

ait anym

ore. \Iv

husband called

the P

C IC

U to

say th

at w

e w

ould like

to com

e dow

n and

see our

son, at

w hich

tim e

they told

us th

at it

w as

not a

good tim

e, and

th at

they w

ould call

to tell

us w

h en

w e

could com

e dow

n.

A S

udden an

d S

erious E

v en

t A

few m

inutes later

there w

as a

knock on

the door.

It w

as a

p h y si

cian and

a nurse,

neither o f

w hom

I had

ever seen

before. ‘T hey

told us

there had

been a

very sudden

and serious

event, and

they repeated

those w

ords again.

I tried

to ask

them several

tim es

in different

w ays,

“W h

at does

th at

m ean?

V /h

at h

ap p

en ed

?”th ev

w ould

only say

th at

it w

as very

sudden and

very serious,

and they

ended w

ith, “W

e w

ill let

you know

w h en

you can

com e

see him

.”T his

w as

around 8

o’clock in

the evening.

Itw as’

tfter m

id n

ig h

t w

hen they

called the

room and

said th

at w

e could

com e

see him

.

\V h en

I saw

nm son,

he had

a b

reath in

g tube

tap ed

very tig

h tl’

on his

m o u th

. Ius

ch est

w as

o p

en .

th ere

w ere

tubes co

m in

g d irectly

o u t

o f

the cen

ter o f

m y

son’s ch

est. T

h ere

w as

a square

elastic tran

sp aren

t b

an d

ag e

over his

h eart,

an d

th at

w as

all th

ere w

as b

etw een

m e

an d

his h eart.

H e

w as

p o sitio

n ed

m o re

like a

frog than

the “pow

erhouse” picture

I had

tak en

of h im

as a

n ew

b o rn

. lie

had a

strange grayish—

green color.

T here

w as

blood all

over the

isolette.

S om

ebody asked

if w

e w

ould like

a priest.

1 said

no. 1

w as

not read

to go

to w

here I

th in

k they

w anted

m e

to go.

M v

husband w

an ted

to know

w h at

had happened

and again

all they

w ould

say w

as th

at it

w as

a sudden

event and

a very

serious event.

T hey

had him

connected to

life su

p p o rt

on an

E C

M O

m achine.2

Jam es

spent F

riday, S

aturday, and

S unday

on the

E C

M O

m achine.

O n

M o n d ay

m o rn

in g

w hen

1 saw

th at

he w

as not

attached to

a n

y th

in g

I nearly

passed out,

because I

th o

u g

h t

he w

as dead. T

hey told

m e

n o t

to w

orry, th

at he

w as

off E

C M

O and

w as

just on

the v en

tilato r.

H e

w as

ventilated fbr

the rest

o f

th at

w eek,

M o

n d ay

th ro

u g h

F riday,

and he

died on

S aturday

as a

consequence o f

a ventilator-associated

p n eu

m o th

o rax

, a

hole in

th e

lung th

at is

caused by

being on

the ventilator.

In su

lt to

the B

rain S

tem ‘Il-ic

day before

the p n eu

m o th

o rax

show ed

up the

nurses started

asking m

e questions.

“D o

any o

f your

children have

epilepsy? D

o you

have any

seizure disorders?”

‘They said

they had

noticed m

y son

did this

little shaking

thing. I

had noticed

it, too.

T hey

ordered a

n eu

ro lo

g ist

consult. M

y husband

left to

take care

o f

our o th

er c h il

d ren

, and

I w

as alone

to receive

the consult

inform ation

from the

n eu

ro lo

g ist.

T he

n eu

ro lo

g ist

said, “Y

our son

has suffered

serious in

su lt

to his

b rain

stein and

his cortex.

lie w

as clearly

b o

rn b rain

h ealth

y and

so m

eth in

g h

ap p

en ed

eith er

d u rin

g or

after surgery.”

I could

n o t

u n d erstan

d ,

it and

the n eu

ro lo

g ist

rep eated

him sel.f

a few

tim es.

H e

w as

sittin g

w ith

m e

in the

room and

w ritin

g th

in g

s dow

n I

had told

him .

I said,“I

w ork

w ith

special kids.

If this

m eans

I have

to w

ork a

little extra

w ith

him ,

I can.

H e

w ill

he able

to craw

l, right?”

E x traco

rp o real

m em

b ran

e o

x y

g t’

n a tio

(E C

I 1

0 )

provides b o th

cardiac and

respiratcu-v su

p p o rt

to p

atien ts

w hose

h eart

and lungs

are so

severely distressed

or d am

ag ed

th at

th ey

.can no

longer serve

th eir

fu n ctio

n .

SECTION I:Patient

Care CASE

4: C

onsent and

D isclosure

in Pediatric

H eart

Surgery

T he

neurologist said,

“M rs.

M an

n ix

, your

son suffered

serious insult

to his

brain stern

and his

cortex.

lie w

rote it

dow n

so I

could look

it up. T

hen he

ordered a

reduction in

the m

edications m

y son

w as

on, w

hich w

ere m

ainly paralvtics.

A fter

they w

ere reduced

Jam es

started to

open his

eyes and

w as

m ore

reactive.‘They finally

asked for

s o

m e

breast m

ilk for

him , w

hich I

had been

expressing the

w hole

tim e.

I w

as pretty

m uch

filling up

the unit’s

freezer w

ith m

y breast

m ilk,

to the

p o in

t th

at they

had to

ask m

e to

please find

som ew

here else

to store

it. B

ut Jam

es did

get to

have som

e breast

m ilk

in those

few hours.

W h en

the crisis

cam e

the next

day, I

had leftJam

es to

go rest.

I w

as very

specific and

told them

th at

if anything

h ap

p en

ed they

w ere

to com

e get

m e.

W h en

they knocked

on the

door and

w oke

m e

up, they

said the

surgeon had

taken m

y son

for em

ergency surgery

to address

the pneum

othorax.

A t

th at

point, probably

after the

conversation w

ith the

neurologist, I

had crossed

a bridge.

I asked

w hy

they had

taken him

for surgery

and said

I did

not w

ant th

em to

do anything

m ore

to him

. I

told them

th at

he had

suft’cred enough,

lie had

three siblings

w ho

w anted

to m

eet him

and hold

him ,

and as

a m

om 1

w as

lucky’ enough

to he

there w

hen he

w as

horn and

I w

an ted

to help

m ake

the tran

sitio n

into w

hatever his

next life

w as

going to

be. I

w an

ted less

pain for

him than

w hat

clearly this

life had

been.

T he

S ize

o f a

9 -M

o n

th -O

ld ‘This

co n v ersatio

n to

o k

place aro

u n

d 7

o’clock in

th e

m o rn

in g

and vet

I found

out later

from the

records th

at he

actually did

n o t

go into

surgery until

11 o’clock

th at

m orning.

W h en

they called

us to

com e

see him

after surgery,

the P

C IC

U doors

opened w

ide and

there in

front of

m e

w ere

all the

blue scrubs

circling the

isolette th

at contained

m y

son. A

s I

w alked

over to

him ,

I saw

th at

he w

as sw

ollen to

the size

o f

a nine

m o n th

old, lie

w as

black, blue,

and purple.

Ius hand

w as

in a

fist and

w as

com pletely

black.‘They had

p ertb

rm ed

a thoracotom

y to

repair the

pneum otho—

rax and

w hile

they w

ere in

there they

had revised

the eoarctation

repair th

e’ had

(lone the

previous w

eek.‘Iii do

this the)’

had put

him back

on E

C \

10. O

nce again,

he had

tubes com

ing out

of his

chest.

I knew

as soon

as I

saw m

y son

in that

state th

at he

w as

gone. lie

w as

dead. A

n d

vet a

nurse brings

over a

little tub

o f

baby bath

fi>r m

e to

give him

a bath,

because he

still had

blood on

his chest

and the

side of

his arm

. I

never dared

to lift

the blanket

on the

side w

here the

open surgical

w ound

w as,

and w

here the

w ound

w as

still draining.

M y

h u

sb an

d asked

w here

the surgeon

w as.‘flue

social w

o rk

er replied

th at

he had

left his

assistan t

th ere

to answ

er o u

r citlestions.

A t

this p o in

t, th

at w

as n o t

en o u

g h

for us.

F o

rtu n

ately fbr

us, or

u n fo

rtu nately

for the

surgeon, w

e ran

into him

in the

hallw ay.

FTc w

as ah’eadv

out of

his hospital

scrubs and

in street

clothes.

?dv h

u sb

an d

asked him

w h at

had h

ap p

en ed

and w

ho w

as overseeing

the care

over the

w eekend

to coordinate

all these

ditT hrent

pieces to

m anage

o u r

sons co

n d

itio n

. T

he surgeon

told us

th at

he did

not w

ork o il

the w

eek en

d and

w ould

n o t

he available

to talk

w ith

us. M

v h

u sb

an d

asked again

w ho

w ould

he there

overseeing o u r

so n s

care. lIw

surgeon did

n o

t know

, H

is response

w as,“W

h at

difference w

ill know

ing th

at m

ake now

? W

ith that,

the surgeon

w alked

aw ay.

“Y ou

T ru

sted U

s” W

e sp

en t

24 hours

w atch

in g

o u

r son

in th

at shape

and after

a c o n

versation w

ith the

sam e

pediatric cardiologist

w ho

had said

“w e

w ere

not talking

open heart

surgery here,”

m y

husband asked

him ,

“Y ou

know ,

it w

as just

a couple

o f

m o n th

s ago

th at

you w

ere telling

us th

at th

is w

a s

n o th

in g

ft)r us

to w

orry about,

th at

this w

as not

a big

co n cern

.\Y liat

happened?” ‘The

cardiologist’s reply

w as,“Y

ou tru

sted us.”

‘Ihat w

as all

he said.

SECTION I:PacientCare

CASE 4:Consent and

D isclosure

in PedIatric

H eartSurgery

‘The last

th in

g th

at w

e w

ere asked

w as

to agree

to turn

off Jam

es’s life

support. M

v h u sb

an d

w as

ad am

an t

th at

the surgeon

he involved

in th

at decision.

T he

surgeon did

n o t

m ake

h im

self available,

and he

did not

com e

back to

the hospital.

It reju

ired m

y husband’s

pushing the

clinicians, the

cardiologist, and

social w

orker to

call the

surgeon. W

e had

a phone

consult in

the P

C IC

U and

agreed as

a team

th at

n o

th in

g m

ore could

he done

for Jam

es and

th at

w e

w ould

turn o ff

the life

support.

A fter

the phone

call, w

hich w

as at

8:00 a.m

. on

S aturday,

w e

w ere

told th

at w

e could

n o t

stay in

the P

C IC

U ,

h u t

th at

they w

ould call

w hen

w e

could com

e and

he w

ith him

. I

in terp

reted th

at to

m ean

th at

w h en

they w

ere ready

to tur.n

off the

m achines

I w

oul.d he

able to

he there

and hold

m y

son. ih

ree hours

passed and

they called

us and

said th

at w

e could

com e

dow n.W

h en

the P

C IC

U doors

o p en

ed this

tim e

I saw

a b rig

h t

lig h t

at his

isolette and

he w

as all

sw addled

up. H

e had

not been

sw addled

before,ever.T here

w ere

no m

achines attached

and there

w ere

a couple

o f

rocking chairs

set up. T

he nurse

pulled the

drape around

us and

they told

us w

e could

hold him

and stay

as long

as w

e w

anted.

S om

ebody placed

him in

m y

arm s

and lie

w as

ice cold.

1 felt

so bad,

.1 could n o t

look at

him .

I still

apologize to

him fo

r that.M

y h u sb

an d

held him

for a

little bit

and h an

d ed

him back

to m

e and

a few

m inutes

later I

put him

back in

the isolette

and w

e w

alked aw

ay It

w as

the last

tim e

I saw

him .T

here w

ere no

social w

orkers, no

c h

a p

lain, nobody

escorted us

back to

the room

. W

e placed

all th

at w

e had

b ro

u g h t

for our

son,his blanket,

and his

outfit th

at he

w as

going to

w ear

hom e,

into a

w agon.

W e

packed up

our stu

ff and

dragged the

w agon

through the

hospital and

b ro

u g h t

it hom

e.

F in

d in

g A

n sw

ers ih

e day

after Jam

es’s funeral

I h an

d w

ro te

a note

to the

hospital asking

for anything

th at

had his

nam e

on it.

I w

an ted

all his

records. 1

w anted

so m

eth in

g o f

his th

at I

could keep

for the

rest o f

m y

life.

W e

got a

m anila

envelope back

w ith

five or

six pages

o f

lab values.

A fter

11 days

in the

hospital and

repeated surgeries,

th at

w as

it!

I found

an article

about a

m om

w ith

a baby

boy w

ho also

had a

coarctation o f

the aorta,

w ho

happened to

be operated

on by

the sam

e surgeon,

and had

had a

bad outcom

e. I

reached o

u t

to the

authors o f

this article

and asked

to talk

to the

m other.T

hey referred

m e

to her

attorney, w

ho had

been th

eir source

o f

inform ation.

‘The m

o th

er w

as not

ready to

tal.k to

m e,

but the

attorney w

as quite

ready to

offer his

su p p o

rt and

help m

e find

answ ers.

I w

as not

looking for

an attorney;

I w

as looking

for som

eone w

ho understood

how this

could have

happened. B

ut finding

the attorney

tu rn

ed out

to be

how w

e accom

plished that.

If I

had not

pursued litigation

w e

w ould

have never

know n

any o f

w h at

w e

now know

.

O n

the day

before w

h at

w ould

have been

Jam es’s

fo u rth

birthday, w

e received

a call

from our

attorney. T

here had

been a

settlem ent

offer of

$750,000, to

he accom

panied by

a gag

order not

to discuss

the case.

M y

counteroffer w

as to

ask for

fees, w

hich m

y attorneys

said w

ere about

S 45,000

to £50,000

at th

at point,

and a

5 -m

in u te

conversation w

ith the

surgeon. T

he answ

er w

as no.

So w

e w

en t

to trial.

W e

fo u n d

o u

t m

uch th

at w

e had

n o t

know n,

like the

fact th

at there

h ad

been a

broken v en

tilato r

in surgery

and the

details o f

b reak

d o w

n in

h an

d o v er

co m

m u n icatio

n s

betw een

clinical team

s. W

e fo

u n d

out th

at they

had electively

taken the

b reath

in g

tube aw

ay from

Jam es

as soon

as w

e had

left the

P C

IC U

th at

first aftern

o o n

after his

original surgery.

H e

h ad

never b reath

ed above

the v en

tilato r

w hen

they did

th at.

T hey

to o k

blood gases

every 10

to 15

m in

u tes,

b u

t m

aybe nobody

w as

read in

g th

em ,

because the

tren d

w as

th at

the carbon

dioxide w

as rising

and the

oxygen satu

ratio n

levels w

ere d ro

p p in

g . ib

is d o w

n w

ard spiral

c o n

tin u ed

u n til

his oxygen

satu ratio

n w

as dow

n in

to the

SO s

and his

carbon dioxide

w as

up in

to the

SO s,

w hen

norm al

is 40—

50. T

hen they

gave him

m o

rp h in

e, and

20 m

in u tes-after

th at

he crashed.

H e

cried out

and som

ebody looked

over and

saw th

at he

w as

gray. This

SftTIQ N

I:Patieni (are

CASE 4:C

onsentand D

isclosure in

Pediatric H

eart Surqery

w as

the “sudden,

serious event”

th at

had caused

Jam es’s

brain dam

age.

A lthough

w e

w ere

told th

at there

w as

som ebody

w ith

our son

all the

tim e

d u rin

g the

hours th

at w

e w

ere not

allow ed

to be

there w

ith him

, nobody

w as

w atching

him closely.

‘[he d o cto

r w

ho w

as the

atten d in

g physician

had been

called in

to cover

for an

o th

er doctor.

lie had

received a

quick h

an d

o ff

and gone

to get

som e

dinner. lh

e nurse

p ractitio

n er

w as

in the

cafeteria.T he

bedside nurse

w as

in the

break room

.

11w jury

found a

verdict o f

neglect against

the hospital

clinicians, hut

they w

ere n o t

held responsible;

m y-

u n d erstan

d in

g is

th at

the jury

th o

u g

h t

Jam es’s

providers w

ere negligent,

h u t

because o f

his heart

defect did

not th

in k

the negligence

caused his

death. A

fter m

y atto

rn ey

s m

istrial m

o tio

n w

as denied

by the

sam e

judge w

ho heard

the ease,

1 put

on the

brakes and

told them

th at

I had

m ost

of the

answ ers

to m

y questions

and th

at I

th o u g h t

w e

could live

w ith

w h at

w e

did not

know . W

e did

not w

an t

to pursue

fu rth

er legal

acti( )n

C onclusion

I w

ent back

to graduate

school and

got a

m aster’s

in ed

u catio

n in

restorative practices,

w hich

isd conciliation

m eth

o d .

1 organized

a com

m unity

project called

Jam es’s

P roject

th at

engages in

a range

of projects

to support

new born

w ell—

being, including

p atien

t advocacy

p ro

g ram

s fo

r infhnt

caregivers. W

e cham

pioned a

bill th

at b ecu

n e

law in

2014, req

u irin

g pulse

o x

im etry

screen in

g in

n ew

b o

rn s

in P

ennsylvania. I

w rote

a hook

about Jam

es’s story

because it

is a

tough story

to tell

all the

tim e,

but also

because I

needed all

the srakeholders

w ho

w ere

involved to

get a

full picture

o f

w h at

really happened.

M v

hook is

called S

plit the

Baby: O

ne C

h ilt/

Jo u rn

e y

Jin-ouglaV ledicineanilL

aw (M

an n ix

,2 0 1

1).T he

title w

as n o t

in ten

d ed

to he

graphic, b u t

actually q u o tes

m y

atto rn

ey in

the m

o tio

n for

a m

istrial because

he likened

the jury’s

verdict to

the B

iblical story

o f

K ing

S olom

on w

ho recom

m ended

sp littin

g the

baby u n d er

eonten— non

as a

w ay

to resolve

a conflict.

In th

e course

of w

ritin g

th e

hook, .1

reached o u

t to

m o

st of

the c lin

i cians

w ho

w ere

involved m

d Ic

m m

cd m

ore ihout

Jim es’s

case F

or exam

ple, I

reached out

to the

d o cto

r w

ho had

com e

to our

room and

told us

there w

as a

sudden e v

e n

t, the

sam e

doctor w

ho had

gone out

to dinner.

lie and

I sat

dow n

and had

a conversation

in the

m iddle

of a

h o

sp iu

l lobby

and he

told m

c th

it he

had ju

st com

pleted a

24— hour

shift w

hen he

w as

called in

to cover

for an

o th

er physician.

H e

feels th

at he

failed his

patieiit, our

son and

us. I

feel th

at they

and w

e failed

our son.

B ut

I also

have to

take ow

nership o f

this failure

and realize

th at

this is

part o f

m y

experience.

€ase D

iscussion In

the early

days o f

petliatric cardiac

surgery, m

ortality rates

w ere

routinely W

ove 5004)

D u rin

g the

p ist

three decades,

surviv mlam

o n

g children

horn w

ith even

the m

ost com

plex cardiac

defects has

increased substantially.

B y

2005— 2009,

discharge m

ortality for

index cardiac

operations reported

to the

S ociety

o f

fhoracic S

urgeons’

F congenital

heart surgery

database had

flillen to

4.0% (Jacobs

et al.,

2011) S

till, there

is (ertain

ly no

room for

co m

p lacen

cy 1

\Io rtah

tv rates

betw een

in stitu

tio n s

vary, indicating

potential m

odifiable the—

tors related

to case

volum e,

experience, and

practice v a ria

h ili

Pre— veritable

adverse events

m ay

occur related

to b

o th

tech n ical

and nontechnic

ml factors

issociated w

ith decision

m aking,

leadership, and

m an

ag em

en t

(Jacobs et

al., 2008).

C om

plications result

in higher

m orbidity,

long— term

disability, decreased

quality o

f life,

and increased

cost to

the h

ealth system

.

T he

field of

p ed

iatric cardiac

care has

received w

orldw ide

reco g n

itio n

as a

leader in

quality and

patieflt safety

and has

advocated for

sys— tem

-w id

e changes

in o rg

an izatio

n al

culture. llie

field has

m any

com plex

p ro

ced u res

th at

d ep

en d

on a

so p h isticated

o rg

an izatio

n al

structure, the

co o rd

in ated

e th

rts o f

a team

o f

individuals, and

high

SECTION I:Patient

Care CASE

4: C

onsent and

D isclosure

in Pediatric

H eart

Surgery

levels o f

cognitive and

technical perform

ance (G

alvan et

al., 2005).

In this

regard, the

field shares

m any

properties w

ith h ig

h -tech

n o lo

g y

system s

in w

hich perform

ance and

outcom es

depend on

com plex

individual, technical,

and organizational

factors- Sand

the interactions

am ong

them .T

hese shared

properties include

the specific

context o f

com plex

team -based

care, the

acquisition and

m aintenance

o f in

d i

vidual skills,

the role

and reliance

on te

c h n o lo

g and

the im

pact o f

w orking

conditions on

enabling great

team perform

ance.

S everal

factors have

been linked

to poor

outcom es

in pediatric

c a r

diac care,

including in

stitu tio

n al

and surgeon-

or operator-specific

volum es,

case com

plexin; team

co o rd

in atio

n and

collaboration, and

system s

fiuilures (deL

eval et

al., 2000).

S afety

and organizational

resilience in

these organizations

ultim ately

is u n d ersto

o d

as a

c h

a r

acteristic o f

the system

— the

sum o f

all its

parts plus

th eir

in terac

tions. In

terv en

tio n s

to im

prove quality

and strategies

to im

p lem

en t

change should

he directed

to im

prove and

reduce variations

in outcom

es. A

n obstacle

to achieving

these objectives

is a

lack o f

appreciation o f

the h u m

an factors

in the

field, including

a poor

u n d erstan

d in

g o f

the com

plexity o f

interactions betw

een the

te c h

n i

cal task,

the stresses

o f

the treatm

en t

settings, the

consequences o f

rigid staff

hierarchies, the

lack o f

tim e

to b

rief and

debrief, and

cultural norm

s th

at resist

change. T

echnical skills

are fu

n d am

en tal

to good

outcom es,

b u t

n o n tech

n ical

skills— coordination,

co o p era

tion, listening,

negotiating, and

so on—

can also

m arkedly

influence the

perform ance

o f

individuals’ W

and team

s and

the outcom

es o f

treatm en

t (S

chraagen et

al., 2011).

It is

only th

ro u g h

open c o m

m unication

and collaboration

w ith

in and

betw een