1 The Principles for Family-Centered Neonatal Care Harrison H. Pediatrics 1993;92:643-650.
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Transcript of 1 The Principles for Family-Centered Neonatal Care Harrison H. Pediatrics 1993;92:643-650.
Parents’ Concerns
• Lack of Information
• Exclusion from Decision-Making
• Overtreatment of Babies
• Undertreatment of Pain
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, Children’s 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
Governor’s Interagency Coordinating Council for Young Children with Disabilities
Intensive Concern: Parents and Physicians Discuss
Neonatology
A SPECIAL ROSS CONFERENCE
June 28-29, 1992
Burlington, Vermont
15
Parents need to become better
informed and empowered
to make decisions
on behalf of
their infants and families.
Parents’ Concerns
• Lack of Information
• Exclusion from Decision-Making
• Overtreatment of Babies
• Pain and suffering of treatment
It was a lie that we had no options,
but we didn’t know it at the time.
Horrible as it sounds,
abortion would have been an
option…
I gathered
every ounce of courage I had
to ask the question
I thought any responsible,
loving parent would ask.
31
As a county social worker,
I had spent the better part of
the previous year
developing a placement for a
youngster whose problems
weren’t 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.
We weren’t told about our son’s
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.
43
Hefferman P and Heilig S. “Giving ‘Moral Distress’ a Voice: Ethical Concerns among Neonatal Intensive Care Unit Personnel.” Cambridge Quarterly of Healthcare Ethics 1999;8:173-8.
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 York:Oxford 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. Chicago:University 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 1982;41:6-16.
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
52
Press reports of the
“worlds smallest baby”
without follow up or appropriate
discussion of problems [and]
costs (financial and emotional)...
54
Physicians who compete in the
lay press contribute to
misunderstanding,
malpractice
and increased cost.
Sanders et al., J Perintol;1995:494-502.
55
“We [neonatologists] have allowed
the media to publicize our successes
widely and have minimized our
failures.”
Stahlman. J Pediatr 1990;116:167-170.
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 child’s condition meant.
King. Hastings Center Report
May-June 1992:18-25.
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 1995;273:703-8.
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
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.
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.
73
During labor I was formally asked
what I wanted done if these
fragile babies developed
complications.
75
We were given the impression
that we had the right to make
such decisions, when, in fact,
we had no rights at all.
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...
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?
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.
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...
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.
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?
92
Anand KJS, et al.
Randomised trial of fentanyl anesthesia in preterm babies undergoing surgery: Effects on the stress response.
Lancet 1987;1:62-66.
Anand KJS, Hickey PR.
Pain and its effects in the human fetus and neonate.
N Engl J Med 1987;31;31:3121- 1329.
93
Whitfield, MF and Grunau, RE.
Behavior, pain perception, and the extremely low-birth weight survivor.Clinics in Perinatology 2000;27:363-379.
Anand, KJS.
Pain, plasticity, and premature birth: a prescription for permanent suffering? Nature Medicine 2000;6:971-973.
Simons S, et al.
The Frequency and Painfulness of Daily Procedures at the Neonatal Intensive Care Unit. Pediatric Research April 2002#2112.
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.
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 1982;69:380.
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 2001;1;1.
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 2002:109:330-338.
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
115
“We don’t 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 2001;F106-F110.
117
Peterson et al. Regional Brain Volume and Cognitive Outcome in Preterm Infants.
JAMA 2000;284:1939-1947.
Kennea et al. Brain Injury in Extremely Preterm Corrected age Using Magnetic Resonance Imaging.
Pediatric Research 2002;51 #2559.
Inder et al. Impaired Cerebral Cortical Development in the Premature Infant Without Periventricular
White Matter Injury.
Pediatric Research 2002;51#2556.
118
Bishop et al.
Aluminum Neurotoxicity
in Preterm Infants
Receiving Intravenous-Feeding
Solutions.
New England Journal of Medicine 1997;
336:1557-61.
120
“a vast uncontrolled experiment
undertaken without informed
consent and with possibly
undesirable results.” Jeffrey Maisels, MD
122
Escobar et al. Outcome among surviving very low birthweight
infants: a meta-analysis. Arch Dis Child 1991;66:204-211.
Escobar. Prognosis of surviving very low birthweight infants: Still in the
dark. Br J Obstet Gynaecol 1992;99:1-3.
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.
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
2000;59:175-91.
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 2000;105:1216-1226.
Wood et al. Neurologic and developmental disability after extremely preterm birth.
New England Journal of Medicine 2000;343:378-84.
132
Evolution of Disability in
Children Born <26 Weeks Gestation and/or
<1000 grams
Before school 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 1997;27:126-132.
136
Results at age 8 for children<2,000 g birthweight
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
139
During the ten years between
Josh’s 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.
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 child’s 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”
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 2001;108:152-7.
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
2001;108:152-7.
155
Parents’ Preferences (USA)
70-86% want right to refuse treatment when risk of disability is
highTaylor. N Engl J Med 1990;322:1891-2.
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 2001;108:152-7.
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