Updated May 2016
Perinatal
Bereavement
Rana
Limbo,
PhD,
RN,
CPLC,
FAAN
Gundersen
Health
System,
La
Crosse,
WI
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stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Disclosures
Rana Limbo has no real or perceived conflicts of
interest that relate to this presentation.
Photos and figures are copyrighted by Gundersen
Lutheran Medical Foundation, Inc., and used with
permission.
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Objectives
1. Describe
caregiving
as
a
theoretical
framework
for
understanding
parental
response
to
the
death
of
a
baby
2. List
three
examples
of
effective
communication
with
bereaved
parents
3. Discuss
two
types
of
keepsakes
for
parents
and
other
family
members
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Statistics
in
the
US
•
26,000
stillbirths
•
19,000
newborn
deaths
•
1,000,000
miscarriages
•
40
‐
100,000
ectopic
pregnancies
•
5,600
babies
die
during
infancy
from
life
‐
threatening
conditions
(American
Pregnancy
Association;
MacDorman &
Kirmeyer,
2009;
Matthews
&
MacDorman,
2011;
March
of
Dimes)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Theory
of
Caregiving
•
Complementary
to
attachment;
hard
‐
wired
•
Consists
of
nurturing,
protecting,
and
socializing
•
Examples
of
each
of
these:
◦
Nurturing:
Parent
bathing
the
baby
before
or
after
death
◦
Protecting:
A
mother
wanting
a
hat
for
her
baby,
who
has
anencephaly
◦
Socializing:
Noticing
that
others
call
the
baby
by
name,
wanting
to
show
baby’s
photos
to
others
(Bowlby,
1988)
Relationship
•
Care
providers
strive
for
integrity
in
relationships
with
patients,
families,
and
others
•
Maintaining
relationship
in
care
provision
and
decision
making
may
conflict
with
care
provider’s
basic
values
and
beliefs
•
Staying
connected
is
key
to
initiating,
maintaining,
and
transitioning
relationship
Miscarriage
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Miscarriage
•
Most
common
type
of
perinatal
loss
and
least
understood
•
Longitudinal
study
from
the
80s
showed
75%
of
women
felt
they
lost
a
baby;
25%
referred
to
miscarriage
as
“life
event”
(Limbo
&
Wheeler,
1986)
•
Findings
replicated
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stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Importance
of
assessment
•
“How
are
you
doing
with
all
of
this?”
•
“Tell
me
what
things
are
like
for
you.”
•
Listen
for
“baby”
or
“my
baby”
•
Response
does
not
depend
on
length
of
pregnancy
or
presence
or
absence
of
other
children
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stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Early
confirmation
of
pregnancy
may
also
affect
perception
of
the
loss
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Determine
point
of
care
•
At
Gundersen Health
System,
70%
of
women
with
miscarriage
seen
in
emergency
room
•
Implement
SOP
that
includes
all
points
of
care
•
Ambulatory/outpatient
clinics
(family
medicine,
Ob/Gyn)
•
Day
surgery
•
Operating
room
(Bacidore,
et
al.,
2009)
Care
in
the
ER
•
Educate
staff
•
Involve
interprofessional
team
•
Carefully
assess
emotional
response
•
Include
support
person
in
discussion
•
Provide
miscarriage
comfort
supplies
for
diagnosis
of
“inevitable”
or
“threatened”
miscarriage
•
Make
follow
‐
up
call
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Providing
support
after
miscarriage
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Respectful
disposition
•
In
most
states,
no
requirement
for
burial
or
cremation
after
miscarriage
•
In
some
states,
patients
with
miscarriage
must
be
notified
that
they
have
a
choice
for
disposition
•
In
most
states,
miscarriage
is
<20
weeks
gestation
(Limbo,
Kobler,
and
Levang,
2010)
Stillbirth
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stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Death
Before
Birth:
Remembering
Sarah
Key
reminders
•
Be
“in
the
moment”
with
the
parents
and
family:
laughter
and
tears
are
complementary
•
Handle
the
baby
lovingly:
Tami
said
she
would
never
forget
“…the
nurse
who
patted
her
butt”
(socializing)
•
Explain
what
parents
might
see
in
language
that
makes
sense:
“You
might
see
that
the
skin
on
her
face
has
slipped
and
that
her
face
is
bright
red
in
spots.”
•
Work
closely
with
genetic
counselors
or
geneticists
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stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Key
reminders
(continued)
•
Caregiving
theory:
“My
job
is
to
keep
her
memory
alive”;
“I’m
her
mother
and
she’s
my
daughter”
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Warland, J., & Davis, D. L. et al. (2011) Caring for families experiencing stillbirth: A unified position statement on contact with the baby. An international collaboration. (Downloadable from numerous websites including bereavementservices.org)
2
0
Newborn
Death
Setting
•
L&D
•
NICU
•
ER
•
PICU
Potential
Causes
•
Immaturity
or
prematurity
•
Sepsis
•
SIDS
•
Shaken
baby
•
Congenital
abnormalities
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Being
with
dying
newborns
•
Nurses
and
babies
are
“in
relationship”
◦
Call
‐
to
‐
presence
◦
Pattern
of
engagement
with
newborn
and
with
parents
•
Caring
may
involve
moral
distress:
tension
between
and
among
those
engaged
with
baby
•
Reflection
is
key
element
of
caring
•
Significance
of
inter
‐
professional
team
•
End
‐
of
‐
life
caring
is
transformative
(Lindsay,
Cross,
&
Ives
‐
Baine,
2012)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Zoe’s
mom
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stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Offering
choices
•
Standard
of
care
to
offer
choice
no
more
than
three
times
over
course
of
care
•
Inter
‐
professional
team
approach
Non
‐
judgmental
tone
•
Honoring
when
“no”
means
“no”
(Limbo
&
Kobler,
2010)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
•
Have
you
thought
about
taking
photos
of
your
baby?
•
We
take
photos
routinely.
How
does
that
sound
to
you?
•
Families
have
shared
with
me
that
photos
have
been
important
to
them.
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Skin
to
Skin
Perinatal
Palliative
Care
(PPC)
Life
‐
threatening
diagnoses
•
Examples:
anencephaly,
trisomy
13
&
18
•
Two
dimensions
◦
Grieving
multiple
losses
◦
Arrested
parenting
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Goal
of
PPC
•
Primary
goal:
advance
care
planning
and
birth
planning
that
reflect
parents’
goals,
values,
beliefs,
and
feelings
•
Goal
is
the
baby’s
comfort,
care
may
include
life
‐
sustaining
modalities
(e.g.,
a
trial
of
treatment)
•
Support
changing
hopes
•
Help
parents
prepare
for
leave
‐
taking
(Kobler
&
Limbo,
2011;
Wool
&
Northam,
2011)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Hope
in
decision
making
•
“Given
what
you
are
now
up
against,
what
are
you
hoping
for?”
•
“Do
you
mind
telling
me
what
else
you
might
be
hoping
for?”
•
Hope
for
comfort
and
hope
for
a
miracle
often
exist
simultaneously
(Feudtner,
2009;
Roscigno,
et
al.,
2012)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
PPC
resource:
RTS
Position
Paper
Children
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stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
The
Mullens children
What
to
say
to
children
•
“The
baby’s
body
didn’t
work
anymore.”
•
“Our
baby
died.”
•
“It’s
OK
to
feel
sad—or
not.”
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
What
can
we
do?
Take
‐
home
points
from
Bridge
to
Hope
•
Planning
for
a
wished
‐
for
child
•
Compassionate
attitude
of
health
care
inter
‐
professional
team
•
Importance
of
family
support
•
Remembrance
of
blessing
ritual
•
Ritual
that
grows
from
relationship:
nurse
holding
baby
•
Delivering
bad
news
with
“I
wish…”
(Quill,
Arnold,
&
Platt,
2001)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Take
‐
home
points
(cont.)
•
Role
of
reflection
in
caregiver
suffering
(Papadatou,
2009)
•
“Being
with”
is
part
of
caring
(Swanson,
1993)
•
Parents
need
support
from
professionals
◦
Acknowledge
their
feelings
◦
Allow
time
for
decision
making
◦
Encourage
and
welcome
supportive
family
and
friends
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Take
‐
home
points
(cont.)
•
Look
for
meaningful
moments
from
which
ritual
can
arise
•
Grounding
oneself
and
reflection
are
part
of
self
care
(Limbo
&
Kobler,
2013;
Perry,
2008)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Awareness
and
self
‐
care
PRAM
P
ause
R
eflect
A
cknowledge
be
M
indful
(Limbo
&
Kobler,
2013)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
PRAM
•Pause:
Stop.
Be
still.
Focus
on
something
in
your
environment.
•Reflect
on
your
own
breathing.
Think
about
what
a
relationship
might
look
like
between
you
and
the
person
you
are
about
to
meet
or
see.
Reflect
on
your
feelings.
•Acknowledge
your
feelings.
Name
what
you
feel.
Tell
yourself
it’s
OK
to
feel
as
you
do.
•
be
Mindful:
Be
in
the
moment
by
bringing
your
full
attention
and
energy
to
the
meaning
of
the
relationship
that
has
brought
you
here.
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Creating
a
culture
of
compassionate
bereavement
care
•
Develop,
support
standard
of
care
•
Create
consistent
care
at
any
point
of
entry
•
Look
for
increased
patient
and
staff
satisfaction
(Wilke
&
Limbo,
2012)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
“Being
connected…A
key
to
my
survival”*
•
Create
a
transition
ritual
between
work
and
home
•
Touch
a
colleague’s
shoulder
to
indicate
your
presence
with
them
•
Offer
to
help
•
Pause
and
reflect
in
the
moment
•
Allow
time
for
debriefing
•
Provide
education
to
new
staff
(*Kearney,
et
al.,
2009)
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
Opportunities
and
Resources
•
Hospital
programs:
Resolve
Through
Sharing
®
began
in
1981
•
Bereavement
training
in
perinatal
death,
neonatal
&
pediatric,
pediatric
&
adult;
coordinator
training
◦
www.resolvethroughsharing.org
•
International
Perinatal
Bereavement
Conference
◦
biennial:
www.perinatalbereavementconference.org
•
Pregnancy
Loss
and
Infant
Death
Alliance
(PLIDA)
•
Certification
in
Perinatal
Loss
Care
from
the
Hospice
and
Palliative
Credentialing
Center®
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
References
•
American
Pregnancy
Association:
www.americanpregnancy.org
•
Bacidore,
V.,
Warren,
N.,
Chaput,
C.,
&
Keough,
V.
A.
(2009).
A
collaborative
model
for
managing
pregnancy
loss
in
the
emergency
department.
JOGNN,
38,
730
‐
738.
•
Bowlby,
J.
(1988).
A
secure
base:
Parent
child
attachment
and
health
human
development.
New
York:
Basic
Books.
•
Cacciatore,
J.
(2010).
Stillbirth:
Patient
‐
centered
psychosocial
care.
Clinical
Obstetrics
and
Gynecology,
53
(3),
691
‐
699.
•
Côté
‐
Arsenault,
D.,
&
Denney
‐
Koelsch,
E.
(2011).
“My
baby
is
a
person”:
Parents’
experiences
with
life
‐
threatening
fetal
diagnosis.
Journal
of
Palliative
Medicine,
14
(12),
1302
‐
1308.
•
Feudtner,
C.
(2009).
The
breadth
of
hopes.
The
New
England
Journal
of
Medicine,
361
(24),
2306
‐
2307.
•
Kearney,
M.,
Weininger,
R.,
Vachon,
M.,
Harrison,
R.,
&
Mount,
B.
(2009).
Self
‐
care
of
physicians
caring
for
patients
at
the
end
of
life.
Journal
of
the
American
Medical
Association,
301
(11),
1155
‐
1164.
This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
References
(cont.)
•
Kobler,
K.,
&
Limbo,
R.
(2011).
Making
a
case:
Creating
a
perinatal
palliative
care
service
using
a
perinatal
bereavement
program
model.
Journal
of
Perinatal
and
Neonatal
Nursing,
25
(1),
32
‐
41.
•
Limbo,
R.,
&
Kobler,
K.
(2013).
Meaningful
moments:
Ritual
and
reflection
when
a
child
dies.
La
Crosse,
WI:
Gundersen
Lutheran
Medical
Foundation,
Inc.
•
Limbo,
R.,
&
Kobler,
K.
(2010).
The
tie
that
binds:
Relationships
in
perinatal
bereavement.
MCN,
The
American
Journal
of
Maternal
Child
Nursing
,
35
(6),
316
‐
321.
[CE:
322
‐
323].
•
Limbo,
R.,
Kobler,
K.,
&
Levang,
E.
(2010).
Respectful
disposition.
MCN,
The
American
Journal
of
Maternal
Child
Nursing,
35
(5),
271
‐
277.
[CE:
278
‐
279].
•
Limbo,
R.,
Toce,
S.,
Peck,
T.
(2008/2009).
Resolve
Through
Sharing®
position
paper
on
perinatal
palliative
care.
La
Crosse,
WI:
Gundersen
Lutheran
Medical
Foundation,
Inc.
(Available
from
bereavementservices.org/position)
•
Limbo,
R.,
&
Wheeler,
S.
(1986).
Women’s
responses
to
the
loss
of
their
pregnancy
through
miscarriage:
A
longitudinal
study.
Forum
Newsletter,
Association
for
Death
Education
and
Counseling,
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This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.
References
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This presentation is copyrighted by the Hospice and Palliative Nurses Association (HPNA). All rights reserved. No part of this presentation may be reproduced,
stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without permission.