Case Discussion
BabyTazz21
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
c/the clOt/i. ihe bib,- other-cd:’ appeire/ to he h,ilthç. Yb: pet/ia/ri: ca’-?;— to,’ I ti’, couple that the ,?;,i tioci ‘coil!,! 170/ he con/irma1 ii,,! ii ‘/:c ‘clv au1 tb ii
the treatment at that time c$ould p;’ohah/v /‘c relative/v st’iight/orwan1—either chug thcmp1 ba/loon dilatation, or an operation to repair the aorta. “W’ are not talking open hca,’t snrçcry here, “said the doctor ((hen James zc’as hot-n, it zeas eon/i ri,:,,! that he had a ,/.acrc I: a ci- tic coat -chit ion, a r,’/,/ic’elv ‘nih/kr,,, cf/he left. JVh,tk//occ-.c is IL,ry Jill,’,,: stor cireha, ?‘ippe,,a/,q?erJ,,;ned diagnosis.
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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
organizations th
at w
e can
foster excellence
in clinical
practice and
innovation in
pediatric cardiac
surgical care.
In Jam
es’s case,
the system
w as
clearly n o t
designed for
delivering reliable
care. S
om e
o f
w h at
h ap
p en
ed to
Jam es
m ay
have happened
because clinicians
lacked w
hat has
been called
“psychological safety”
and w
ere afraid
to speak
up (K
ennedy, 2001).
‘This case
also h
ig h
lights the
im p
o rtan
t role
o f
patients and
fam ilies.
T his
case and
others should
stim ulate
discussion about
the barriers
th at
team s
and organizations
need to
overcom e
and the
changes th
at team
s and
organizations need
to develop
in order
to engage
fam ilies
and deliver
safe and
resilient care.
T he
overarching th
em e
in Jam
es’s story
is the
absence o
f m
eaningful inform
ed consent.
A t
w h at
points in
Jam es’s
diagnosis and
treatm en
t do
you see
the inform
ed consent
process breaking
dow n?
W h at
do you
th in
k Jam
es’s healthcare
providers should
have done
differently to
m ore
effectively com
m unicate
w ith
Jam es’s
parents? 2.
Jam es’s
parents felt
th at
they w
ere n o
t allow
ed to
participate in
th eir
son’s care
and w
ere excluded
from key
m om
ents th
at w
ould have
allow ed
th eir
baby to
experience w
arm th
and hum
an contact.
W h at
policies do
you th
in k
could be
put in
place to
prevent this
from happening?
F low
do you
th in
k the
absence o f
such policies
m ig
h t
have affected
Jam es’s
care? 3.
Jam es’s
initial d o w
n tu
rn cam
e w
hen he
w as
not closely
observed after
being rem
oved from
the ventilator.
T his
w as
apparently exacerbated
by a
p o o r
handover process.
W h
at handover
practices could
be used
to ensure
effective co
m m
u n icatio
n o
f key
in fo
rm atio
n and
oversight o f
patients? 4.
Jam es’s
parents w
ere given
little in
fo rm
atio n
about w
hat had
happened to
their son,
eith er
w hile
they w
ere in
the hospital
or w
hen they
requested th
eir son’s
records. T
his ultim
ately led
to a
protracted, costly
legal battle.
T he
parents say
their legal
course had
only one
purpose— to
find out
w h at
had happened
to th
eir son.‘T
here are
now program
s th
at are
designed to
prevent this
sort o f
adversarial outcom
e by
responding openly
and p ro
activ el
to adverse
events, H
o w
do you
th in
k the
presence o f
such a
program m
ig h t
help avoid
unnecessary legal
action and
help healthcare
providers learn
from their
Q u
estio n
s 1.m
istakes?
