1425 PORTENOY Panel Nov 2012 - Department of Pain Medicine ...

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1425 PORTENOY Panel Nov 2012 - Department of Pain Medicine ...

Moderator:
Russell
K.
Portenoy,
MD


Panelists:


John
M.
Saroyan,
MD


Debra
F.
Fox,
APRN,
FNP‐BC,
CHPN


Katherine
Leonard,
MD


Erica
Rosenbaum,
LMSW



11
month
old
female


Epidermolysis
bullosa,
junctional
type


Extensive
skin
&
gastrointestinal
lesions


Failure
to
thrive


Significant
developmental
delay


PE:

Extensive
desquamation
to
arms,
legs;
scapulae


and
sacrum



Comfort
care;


DNR



Pain
management


Methadone
0.1
mg
po
tid
+Morphine
prn


Parental
concern
over
“addiction”


Principle
of
double
effect


Dressing
changes


Management
of
other
symptoms


Pruritis,
irritability,
dyspnea


Feedings


Medications


Formulations
with
and
without
feeding
tube



Psychosocial
support
in


Recessive
autosomal
inheritance


Well,
“unaffected”
sibling


Multiple
loss
bereavement


Home
health
nursing
+
palliative
care


Opportunities
for
collaboration
with
industry
and


national
organizations



10
y/o
girl


ALL


s/p
standard
chemotherapy,
not
a
BMT
candidate,


Phase
I
and
II
trials
exhausted


Transfusion
dependent


Referred
to
hospice
on
discharge
from
hospital



Symptom
control




pain,
nausea,
dyspnea,
fear
and
anxiety,
insomnia


Goals
of
care



transfusion,
feeding,
antibiotics,
code
status


Transition
to
Home


Family,
Patient
and
Community
Support
at
end‐of‐life


and
through
bereavement



Brief
overview



~.
State
and
Federal
guidelines



~.
Incorporating
Pediatric
hospice
and
palliative
care


within
the
guidelines
of
concurrent
care



• 6
y/o
boy



• temperature
and
blood
pressure
abnormalities


• dystonic
posturing


• diaphoresis
and
erythroderma


• severe
neurologic
impairment
following


meningitis/encephalitis


• generalized
tonic‐clonic
seizures


• Multiple
ED
visits


• ICU
admissions
over
three
years
with
multiple


prolonged
intubations,
sepsis
work‐up
(including


spinal
taps),
many
pneumonia




Diagnosis


Neuroirritability


Treatment


Clonidine


Clonazepam


Diazepam
PR


Goals
of
Care
and
Home
Services


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