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The Principles for

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Overtreatment of Babies. Undertreatment of Pain ... Bogdan R, Brown MA, ... ten days to inform us! If so, what rights do we. parents have over our babies' ... – PowerPoint PPT presentation

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Title: The Principles for


1
The Principles for Family-Centered Neonatal
Care Harrison H. Pediatrics 199392643-650.
2
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Neonatology and the Rights of Families http//NA
ROF.ORG
6
Parents Concerns
  • Lack of Information
  • Exclusion from Decision-Making
  • Overtreatment of Babies
  • Undertreatment of Pain

7
Parents Concerns
  • Nursery Environment and Policies
  • Safety and Efficacy of Neonatal Therapies
  • Lack of Follow-up
  • Lack of Commitment to Survivors

8
Jerold F. Lucey, MD Editor, Pediatrics Physician
Chairman, Intensive Concern Parents and
Physicians Discuss Neonatology
9
Physician Participants Jerold Lucey, MD, Editor
of Pediatrics, University of Vermont Mary Ellen
Avery, MD, Harvard Medical School Roberta
Ballard, MD, University of Pennsylvania School
of Medicine Iain Chalmers, MBBS, MSc, DCH, FRCOG,
FFPHM, Director, National Perinatal
Epidemiology Unit, Oxford, UK John Driscoll, MD,
Columbia University, New York Alan Jobe, MD, PhD,
UCLA School of Medicine Sheldon Korones, MD,
University of Tennessee William Silverman, MD,
(retired) Columbia University, New York
10
Parent Participants Lynn Blanchard, MPD, PhD,
Chapel Hill, N.C President Parent Care, Inc.
Associate Director, Family Support Network Carol
Castellano, Madison, NJ President, NFB Parents
of Blind Children Page Talbott Gould, PhD, Bala
Cynwyd, PA Founder, Intensive Caring
Unlimited Helen Harrison, Berkeley, CA Author,
The Premature Baby Book Founding Member Parent
Care, Inc. Ronnie Londner, MEd, Miami, FL
Founder, IVH Parents
11
Parent Participants Elizabeth Mehren, Hingham,
MA Author, Born Too Soon Amita Sarin, MSc,
Washington, DC Parent Representative, Ethics
Committee, Childrens Hospital Medical Center,
Washington, DC Stephanie Sorenson, JD, Orinda,
CA Ethics Writer and Lecturer with SAND (Support
After Neonatal Death) Robert Stinson, PhD,
Bethlehem, PA Author, The Long Dying of Baby
Andrew Sarah Thorson, BSW, Minneapolis, MN
Governors Interagency Coordinating Council for
Young Children with Disabilities
12
The Principles for Family-Centered Neonatal Care
13
Intensive Concern Parents and Physicians
Discuss Neonatology
  • A SPECIAL ROSS CONFERENCE
  • June 28-29, 1992
  • Burlington, Vermont

14
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Parents need to become better informed and
empowered to make decisions on behalf of their
infants and families.
16
Parents Concerns
  • Lack of Information
  • Exclusion from Decision-Making
  • Overtreatment of Babies
  • Pain and suffering of treatment

17
Sarah and Bob Thorson Minneapolis, MN
18
In 1987 I was 21 weeks into a triplet pregnancy
and in labor.
19
My husband asked the perinatologist about our
options.
20
You dont have any options, the doctor
replied.
21
It was a lie that we had no options, but we
didnt know it at the time. Horrible as it
sounds, abortion would have been an option
22
The decision should have been ours.
23
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I gathered every ounce of courage I had to ask
the question I thought any responsible, loving
parent would ask.
25
At what point do we say enough is enough
for this little boy?
26
The neonatologist answered, You dont make
those decisions! We do!
27
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28
We were led to believe that 80 of
children with grade IV bleeds turn out fine.
29
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30
If you cant manage, you can give the babies
up and put them in foster care.
31
As a county social worker, I had spent the
better part of the previous year developing a
placement for a youngster whose problems werent
nearly as serious as those of our children.
32
This placement, outside an institutional
setting, was so unique that it made the local
papers. It also cost 300 a day.


33
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34
Wanda and Keaton Boggs Milwaukee, Wisconsin
35
We werent told about our sons devastating
intraventricular hemorrhage until a week after it
occurred and then only because we had begun to
ask some very pointed questions.
36
When we asked about the consequences of such a
severe bleed, we were told that our son might
have problems in math later on.
37
Meanwhile a neurologist was writing in the chart
that the probable outcome was a persistent
vegetative state.
38
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39
Charles and Mary Anne Freeman Princeton, New
Jersey
40
What my son went through in six months, I will
never forget as long as live!
41
It was torture, cruel and inhumane, all for a
terrible proposed outcome.
42
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43
Hefferman P and Heilig S. Giving Moral
Distress a Voice Ethical Concerns among
Neonatal Intensive Care Unit Personnel.
Cambridge Quarterly of Healthcare Ethics
19998173-8. Anspach, RR. Deciding Who Lives
Fateful Choices in the Intensive Care Nursery.
Berkeley, CA University of California Press,
1993. Guillemin JH, Holmstrom LL. Mixed
Blessings Intensive Care for Newborns. New
YorkOxford University Press, 1986. Gustaitis R,
Young EWD. A Time to be Born, A Time to Die.
Reading, MA Addison-Wesley, 1986.
44
Frohock FM. Special Care Medical Decisions at
the Beginning of Life. ChicagoUniversity of
Chicago Press, 1986. Rottman CJ. Ethics in
Neonatology A Parents Perspective.
(thesis)Cleveland, OH School of Applied Social
Sciences, Case Western ReserveUniversity,
1985. Bogdan R, Brown MA, Foster SB. Be honest
but not cruel staff/parent communication on a
neonatal unit. Human Organization
1982416-16.
45
  • Information given parents in the NICU
  • often consists of euphemisms and
  • half-truths.
  • Parents are rarely informed about
  • major uncertainties surrounding their
  • babies care or allowed to participate in
  • decisions.

46
At three junctures of moral decisions --
resuscitation, treatment planning, and
withdrawal of treatment...
47
parents were either not invited by physicians
to participate, or were influenced in their
choices by selectively presented information.
48
Parents are unequal partners with
physicians because of limited access to
information. C. J. Rottman, PhD
49
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50
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51
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52
Press reports of the worlds smallest baby
without follow up or appropriate discussion of
problems and costs (financial and emotional)...
53
...do nothing but create unreal expectations in
parents and families.
54
Physicians who compete in the lay press
contribute to misunderstanding, malpractice and
increased cost. Sanders et al., J
Perintol1995494-502.
55
We neonatologists have allowed the media to
publicize our successes widely and have minimized
our failures. Stahlman. J Pediatr
1990116167-170.
56
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57
I listened to many discussions with parents with
a pervasive sense that something crucial was
being left out of them all.
58
What I saw as missing was the link between
information disclosure and parental
understanding of the implications either
immediately or long term...
59
Parents were not told or did not know how to
ask what their childs condition meant. King.
Hastings Center Report May-June 199218-25.
60
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61
Cook DJ, et al. with the Canadian Critical Care
Trials Group. Determinants in Canadian health
care workers of the decision to withdraw life
support from the critically ill. JAMA
1995273703-8.
62
Ericka and Jacques Montreal, Canada
63
They never discussed the girls medical care
with us. We were not allowed to see the chart
which the staff hid behind a desk.
64
Because we asked a lot of questions, we were
labeled difficult parents and told to see the
social worker
65
We asked that Eve not be resuscitated, but they
resuscitated her nonetheless.
66
Finally, when Eve was 3 weeks old, we were able
to spend an hour consulting with a doctor who
was only at the hospital as a temporary
replacement.
67
He agreed to stop Eves respirator. She died a
minute later in our arms.
68
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69
After the operation the neurosurgeon and the
neonatologist told us that the shunt had made
her condition worse. She now had a grade 4
bleed.
70
They advised us to stop the respirator. What a
difference in comparison with the other
hospital!
71
Virginie died in our arms. She was four and a
half weeks old.
72
Chantal and Luc Montreal, Canada
73
During labor I was formally asked what I wanted
done if these fragile babies developed
complications.
74
I said that we wanted to let the babies go if
they were going to survive with severe handicaps.
75
We were given the impression that we had the
right to make such decisions, when, in fact, we
had no rights at all.
76
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77
It was then that we learned that the doctors had
known for ten days but that they had not informed
us because they could not agree on the
prognosis...
78
even though it is well known that a grade 4
hemorrhage with leukomalacia has a poor
outcome...
79
They claimed, of course, that it was for our own
good that they had waited ten days to inform
us! If so, what rights do we parents have over
our babies treatment?
80
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81
At no time did we feel that our opinions or
feelings were important to this neonatologist.
She gave us the impression that she was losing
an interesting case in offering us this
alternative.
82
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83
We tried to get them to stop aggressive
treatment once we had made the most difficult
decision of our lives -- to remove Christophe
from life support.
84
They should have let nature take its course.
But whenever his heartbeat weakened, they would
bag him in oxygen...
85
I will not go to jail for you!
86
After ten long days Christophe was slowly
dying I will never know if he suffered, but I
believe the dying process usually involves
suffering.
87
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88
What if we had not found the inner strength to
ask the right questions, to insist on answers, to
anticipate events, and seek appropriate help?
89
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90
Jill Lawson Silver Spring, MD
91
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92
Anand KJS, et al. Randomised trial of fentanyl
anesthesia in preterm babies undergoing
surgery Effects on the stress response.
Lancet 1987162-66. Anand KJS, Hickey PR.
Pain and its effects in the human fetus and
neonate. N Engl J Med 198731313121- 1329.
93
Whitfield, MF and Grunau, RE. Behavior, pain
perception, and the extremely low- birth weight
survivor.Clinics in Perinatology
200027363-379. Anand, KJS. Pain, plasticity,
and premature birth a prescription for
permanent suffering? Nature Medicine
20006971-973. Simons S, et al. The Frequency
and Painfulness of Daily Procedures at the
Neonatal Intensive Care Unit. Pediatric Research
April 20022112.
94
As a matter of common decency, parents must be
informed that at the present time
neonatologists do not know how to control much
of their babies pain.
95
Parents must be told about this deficit in
medical knowledge if they are to participate in
the process of informed consent.
96
The pain these babies (and families) suffer is
the most important issue. W.A. Silverman, MD
97
Parents Concerns --The Nursery Environment and
Nursery Policies
98
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99
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100
Parents Concerns -- Safety and Efficacy of
Neonatal Therapies
101
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102
The National Institute for Child Health and Human
Development (NICHD) RFA-NICHD-85, Request for
Cooperative Agreement Application. June 14, 1985
103
often based on limited knowledge of new
modalities not subjected to critical
studies prior to introduction and acceptance...
104
where therapeutic interventions may change
within months before adequate studies of safety
and efficacy are initiated, much less
completed.
105
Russian Roulette in the Nursery Silverman,
W.A. Russian Roulette in the Nursery-- Again.
Pediatrics 198269380.
106
  • Postnatal Steroids
  • 25 of
  • 50 of
  • Tens of thousands exposed

107
  • Steroids
  • Adverse Outcomes
  • Hypertension
  • Hyperglycemia (requiring insulin)
  • Intestinal perforation
  • Infection (including meningitis)

108
  • Steroids
  • Adverse Outcomes
  • Cardiomyopathy
  • Poor Weight Gain
  • Poor head/brain growth
  • Periventricular leukomalacia

109
  • Steroids
  • Adverse Outcomes (Long Term)
  • Cardiovascular disease
  • Immune system disorders
  • Severe ROP
  • Neurological and behavioral deficits
  • Cerebral Palsy

110
Barrington, K. The adverse neurodevelopmental
effects of postnatal steroids in the preterm
infant a systematic review of RCTs. BMC
Pediatrics 200111.
111
Steroids Cause 1,000 extra cases
of neurodevelopmental impairment 1,600 extra
cases of cerebral palsy in the US and Canada
each year.
112
American Academy of Pediatrics and the Canadian
Paediatric Society. Postnatal Corticosteroids to
Treat or Prevent Chronic Lung Disease in Preterm
Infants. Pediatrics 2002109330-338.
113
  • Steroids
  • linked to increased incidence of
    neurodevelopmental delay, cerebral palsy and
    other complications
  • offer no substantial short or long term benefits
  • should be limited to carefully designed trials
    and used only with fully informed parental consent

114
Another Area of Controversy Oxygen Levels
and Handicap
115
We dont even know what level of arterial oxygen
tension we should be aiming for. Tin et al.
Pulse oximetry, severe retinopathy, and outcome
at one year in babies of less than 28 weeks
gestation. Arch Dis Child 2001F106-F110.
116
Another Area of Controversy Nutrition and Brain
Development
117
Peterson et al. Regional Brain Volume and
Cognitive Outcome in Preterm Infants. JAMA
20002841939-1947. Kennea et al. Brain Injury in
Extremely Preterm Corrected age Using Magnetic
Resonance Imaging. Pediatric Research 200251
2559. Inder et al. Impaired Cerebral Cortical
Development in the Premature Infant Without
Periventricular White Matter Injury. Pediatric
Research 2002512556.
118
Bishop et al. Aluminum Neurotoxicity in Preterm
Infants Receiving Intravenous-Feeding
Solutions. New England Journal of Medicine
1997 3361557-61.
119
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120
a vast uncontrolled experiment undertaken
without informed consent and with possibly
undesirable results. Jeffrey Maisels, MD
121
  • Parents Concerns
  • Lack of Follow Up

122
Escobar et al. Outcome among surviving very low
birthweight infants a meta-analysis. Arch Dis
Child 199166204-211. Escobar. Prognosis of
surviving very low birthweight infants Still in
the dark. Br J Obstet Gynaecol 1992991-3.
123
Suzanne Calvello Westchester County, New York
124
When Natalie was two, I was asked to bring her
back to the NICU for a follow-up study.
125
At the time, she was being treated for cerebral
palsy by a world-famous neurologist for visual
defects by a pediatric ophthalmologist
126
for ear and throat problems by an ENT for
chronic pulmonary disease by a pediatric
pulmonologist...
127
for immune deficiencies by an infectious
disease specialist and for orthopedic problems
by a pediatric orthopedist. She was also
receiving speech, physical, and occupational
therapy.
128
However, for the purposes of the NICU follow-up
study, She was declared NORMAL!
129
Walther et al. Looking back in time Outcome of
a national cohort of very preterm infants born in
the Netherlands in 1983. Early Human Development
200059175-91.
130
Evolution of Disability in Children Born 26- 32
Weeks Gestation Before school age 10
handicapped By adolescence 40 not expected to
live independently as adults
131
Vohr et al. Neurodevelopmental and and
functional outcomes of extremely low birth
weight infants in the NICHD Research Network,
1993-1994.
Pediatrics 20001051216-1226. Woo
d et al. Neurologic and developmental disability
after extremely preterm birth. New England
Journal of Medicine 2000343378-84.
132
Evolution of Disability in Children Born Weeks Gestation and/or age 50 handicapped Eventual independent
living ?
133
  • Infant Health and Development Program
  • 35 Million
  • Home and Center-based
  • Intensive intervention with parents and
    infants, birth to age 3

134
  • Infant Health and Development Program
  • 874 LBW children
  • 336 enrolled in early intervention
  • 8 sites around the US
  • 15,146 per child per year

135
McCarton et al. Results at age 8 of early
intervention for low-birth-weight premature
infants The Infant Health and Development
Program. JAMA 199727126-132.
136
  • Results at age 8 for children
  • No differences in
  • IQ -- Intervention Group 88.3
  • Control Group 89.5
  • special education
  • grade retention
  • behavior problems

137
  • Parents Concerns
  • Lack of medical and societal commitment to the
    long term care of NICU survivors

138
Shay and David Eikner Denver, Colorado
139
During the ten years between Joshs birth and
death, it seemed as if the doctors were slowly
chipping away at his body and his spirit.
140
During those ten years, what stands out are the
constant battles to find Josh help and treatment.

141
As his care became more difficult and
unsuccessful, much of the medical community
backed away in frustration.
142
Believe me, I felt the frustration too, but I
spent the endless nights holding him while he
cried in pain and asked me to make the hurt go
away.
143
My greatest fears from ten years ago were
realized that in spite of all the love and
nurturing we gave Josh, we could never take away
the pain or make him well.
144
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145
  • Parent/Professional Collaboration
  • Information
  • Communication
  • Informed Choice

146
  • Inform the Public
  • Realistic Information in
  • The Media
  • The Schools
  • Preconceptional and
  • Prenatal Care

147
  • Routine Prenatal Care should include
  • Introduction to the NICU
  • NICU Policies
  • Gestational-Age-Specific Statistics
  • Ethical Options
  • Prenatal Directives

148
  • In the NICU Give Parents Facts
  • Access to Rounds
  • Access to the Chart
  • Access to Medical Articles and the Internet
  • Access to other Families

149
There is no excuse, no matter how
well-intentioned for withholding important
clinical information about a childs condition
or prognosis from his or her parents.
150
Parents should have available to them the same
facts and interpretations of those facts as the
staff.
151
  • Give the Facts Meaning
  • Tapes of Parent/Staff Conferences
  • Videos
  • Discuss Parental versus Staff Preferences

152
Would neonatal staff want treatment for their
own high risk babies?
153
Neonatologists Preferences 94 say treatment
not necessary when risk of disability is
high Streiner, Saigal, Burrows et al.Attitudes
of Parents and Health Care Professionals Toward
Active Treatment. Pediatrics 2001108152-7.
154
Parents Preferences (Ontario) 44 say treatment
not necessary when risk of disability is
high Streiner, Saigal, Burrows et al.Attitudes
of Parents and Health Care Professionals Toward
Active Treatment. Pediatrics 2001108152-7.
155
Parents Preferences (USA) 70-86 want right to
refuse treatment when risk of disability is
high Taylor. N Engl J Med 19903221891-2. Abrams
et al. Colorado Speaks out on Health.1988.
156
90 say parents should make the
decisions Streiner, Saigal, Burrows et
al.Attitudes of Parents and Health Care
Professionals Toward Active Treatment. Pediatrics
2001108152-7.
157
  • Parent/Professional Collaboration
  • Institutional Review Boards
  • Neonatal research
  • Communication training
  • NICU policies
  • Support for lactation and breastfeeding

158
  • Parent/Professional Collaboration
  • Follow-up Studies
  • Ethics consultation and training
  • Care in the community

159
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