Newborn palliative care:

1
Newborn palliative care Experiences of
participants in a perinatal comfort care
program Kathryn B. Davies, RNC, BSN Department
of Nursing, CSUF St. Joseph Hospital, Orange, CA
Introduction A Perinatal Comfort Care Program
(PCCP) is offered at St. Joseph Hospital in
Orange, California to families with infants
diagnosed antenatally with a lethal condition. No
in depth exploration has been undertaken to
examine the needs and lived experiences of the
families that have participated in this program,
to provide recommendations for program
improvement or determine program efficacy.
Discussion Family centered palliative care
assists with coping and helps to prepare the
family for the eventual demise of an infant. Even
with this support, families face difficult,
emotional situations. The following illustrate
some of the experiences as expressed by the
participants.
VALIDATE
Program Evaluation
Families with Infants with Lethal
Diagnoses
Perinatal Comfort Care Program
Perceptions
Care
Methods
Feedback
Decisions
Qualitative Design ? Face to face interviews,
tape recorded to limit errors in recall ? Open
ended semi-structured interview questions ?
Content analysis to extract meaning from
interview transcripts ? Common themes
categorized and coded using line by line
analysis ? Reliability enhanced by the use of
more than one reviewer to code data ? Study
approved by the IRB of St. Joseph Hospital and
CSUF
It was a hard thing for me, here I was carrying
a baby that wasnt going to live.
IMPROVE
At first I was thinking, this baby wasnt going
to survive. I didnt want to be close. I didnt
want to get hurt anymore.
Review of Literature
I told (her ) about my daughter with Trisomy 13,
and she said, Why are you still pregnant?
Convenience Sample ? All
participants experienced a lethal perinatal
diagnosis (Trisomy 13, Potters Syndrome,
Multiple anomalies) ? All used services of PCCP
at St. Joseph Hospital from September 2006-
December 2007 ? Restricted to adult family
members with ability to communicate in
English ? 33 Hispanic, 67 Caucasian ? 21
to 32 years of age
Many infants die prenatally or in the neonatal
period due to prematurity or fetal abnormalities
that are incompatible with life. ? Congenital
anomalies account for the largest number of
these deaths ? Improvements in diagnostic
testing have led to identification prior to
birth ? 20-40 of parents chose to continue with
their pregnancy The advantages of perinatal
palliative care is that family centered care
begins at diagnosis rather than at birth. ?
Mementos are often created to bring meaning to
the life of the infant and assist with coping ?
Grieving begins at diagnosis Little formalized
feedback has been obtained from families who have
participated in palliative care programs. ?
Referral to palliative care programs is
infrequent ? Very few programs exist that
encompass prenatal, intrapartum, postpartum and
home hospice care for infants ? Little
research has been conducted
I could still hear the babies around me, it was
very hard, butI still had the mindset that my
baby could be okay.
They say, Well next time you can find out early
so that you can abort.
Conclusions Insight into the lived experience
of participants of the PCCP at St. Joseph
Hospital was obtained. The results imply that the
Program supports families with terminal infants,
prepares them for the eventual demise of their
infant and decreases their need for long term
bereavement support. The transition through
anticipatory grief to the celebration of life,
however short, is encouraged. The findings have
not indicated the need for alteration of the
current program. Validity of this study will be
based on transferability to other settings and
replication of common themes.
Collaboration with Family Empowerment
Three major themes emerged from the
data ? Family centered care Demonstrated
by the inclusion of extended family members,
preservation of memories and celebrations of
life ? Preparation and collaboration with
families to support their decisions
Demonstrated through use of a collaboratively
developed Birth Plan and family empowerment ?
Support provided by the nursing staff, PCCP
staff and physicians Demonstrated through
spiritual support, music therapy, and
assistance with funeral arrangements
Results
If there was something I wanted to do, they
would accomplish that.
This is who I am, this is what I want to do,
this is important to me...
I never would have thought about having a tape
recorder and a professional photographer.
I feel that they were my decisions. They were
completely my decisions.

Implications for Nursing
Encourage further research
It was nice to know that with the Perinatal
Comfort Program, they were going to make sure
all my wishes were met.
I filled out 2-3 plans of care. But I kept
changing them. I liked that I was able to change
my mind.
Increase nursing knowledge
Encourage creation of like programs
Implications for Nursing
Solicit funding through grants
Family Centered Care Celebration of Life
Develop educational programs
Support
Increase physician referral
They made sure I had my family there, after my
cesarean, so that we could give my daughter a
blessing.
The photographer was very compassionateHe
really captured (my baby) as well as the whole
family.
We had a music therapist come over. We
discussed some songs. This gave my daughter time
to talk about (our baby).
They helped me to understand it was okay to be
close to this baby, it was okay to bond, to
treasure that time.
Acknowledgments A special thank you to all the
participants who generously offered their time to
be interviewed for this study. I would also like
to thank my chair, Dr. Dana Rutledge for her
guidance, Dr. Maryann Garon for her help in
coding interview transcripts and Suzanne Engelder
for assistance with Perinatal Comfort Care
Program data.
I am extremely grateful to the hospital for
respecting my daughter, for respecting my
family
I carried her for nine months I got to have
her for four hours. I wanted to celebrate those
facts.
I felt she really empathized with me and
comforted me.
She got me all set up with the Mortuary so that
all I had to do was go and make my choices.
The music therapist was really good for my
kids.
They made it possible to have my daughter in
there. She got to give (our baby) her first
bath.
I was able to call her (the nurse) over and
she was able to sit and talk with me and
listen
You just listened to me, and all my needs were
met.
For further information Please contact Kathryn
Davies RN, BSN email address kathy.davies_at_stjoe.
org For more information on the PCCP at St Joseph
Hospital go to http//www.sjo.org/Community_Progr
ams_Events/Home_Health/Hospice_Care/Perinatal_Comf
ort_Care_Program.aspx For information on Infant
Bereavement Photography by Now I lay me Down to
Sleep go to http//www.nowisleep.com/showthread.
php?t1207