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The Principles for

Family-Centered

Neonatal Care

Harrison H. Pediatrics 1993;92:643-650.

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Neonatology and the Rights of Families

http://NAROF.ORG

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

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Jerold F. Lucey, MD

Editor, Pediatrics

Physician Chairman,

Intensive Concern:

Parents and Physicians Discuss

Neonatology

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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

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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

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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

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The Principles for

Family-Centered

Neonatal Care

Intensive Concern: Parents and Physicians Discuss

Neonatology

A SPECIAL ROSS CONFERENCE

June 28-29, 1992

Burlington, Vermont

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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

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Sarah and Bob Thorson

Minneapolis, MN

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In 1987 I was 21 weeks

into a triplet pregnancy and

in labor.

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My husband asked the

perinatologist about our options.

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“You don’t have any options,”

the doctor replied.

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…

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The decision should have been ours.

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I gathered

every ounce of courage I had

to ask the question

I thought any responsible,

loving parent would ask.

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“At what point do we say

enough is enough

for this little boy?”

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The neonatologist answered,

“You don’t make those decisions!

We do!”

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We were led to believe

that 80% of children

with grade IV bleeds

turn out fine.

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“If you can’t manage,

you can give the babies up

and put them in

foster care.”

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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.

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This placement,

outside an institutional setting,

was so unique that it made

the local papers.

It also cost $300 a day.

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Wanda and Keaton Boggs

Milwaukee, Wisconsin

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.

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When we asked about the

consequences of such a

severe bleed, we were told that

our son might have problems

in math later on.

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Meanwhile a neurologist

was writing in the chart

that the probable outcome was

a persistent vegetative state.

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Charles and Mary Anne Freeman

Princeton, New Jersey

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What my son went through

in six months,

I will never forget

as long as live!

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It was torture,

cruel and inhumane,

all for a terrible proposed outcome.

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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.

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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.

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•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.

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At three junctures

of moral decisions --

resuscitation,

treatment planning,

and withdrawal of treatment...

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…parents were either not

invited by physicians to

participate,

or were influenced in their choices

by selectively presented

information.

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Parents are unequal partners

with physicians

because of limited access

to information.

C. J. Rottman, PhD

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Press reports of the

“worlds smallest baby”

without follow up or appropriate

discussion of problems [and]

costs (financial and emotional)...

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...do nothing but create unreal

expectations in parents and

families.

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Physicians who compete in the

lay press contribute to

misunderstanding,

malpractice

and increased cost.

Sanders et al., J Perintol;1995:494-502.

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“We [neonatologists] have allowed

the media to publicize our successes

widely and have minimized our

failures.”

Stahlman. J Pediatr 1990;116:167-170.

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I listened to many discussions

with parents

with a pervasive sense that

something crucial

was being left out

of them all.

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What I saw as missing

was the link between

information disclosure

and parental understanding

of the implications

either immediately or long term...

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[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.

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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.

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Ericka and Jacques

Montreal, Canada

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They never discussed the girls’

medical care with us. We were not

allowed to see the chart which the

staff hid behind a desk.

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Because we asked a lot of

questions, we were labeled

“difficult parents” and told

to see the social worker

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We asked that Eve not be

resuscitated, but they resuscitated

her nonetheless.

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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.

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He agreed to stop Eve’s

respirator.

She died a minute later

in our arms.

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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.

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They advised us to stop the

respirator.

What a difference in comparison

with the other hospital!

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Virginie died in our arms.

She was four and

a half weeks old.

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Chantal and Luc

Montreal, Canada

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During labor I was formally asked

what I wanted done if these

fragile babies developed

complications.

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I said that we wanted to let the

babies go if they were going to

survive with severe handicaps.

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We were given the impression

that we had the right to make

such decisions, when, in fact,

we had no rights at all.

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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...

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…even though it is well known

that a grade 4 hemorrhage

with leukomalacia has

a poor outcome...

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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?

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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.

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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.

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They should have let nature

take its course. But whenever

his heartbeat weakened,

they would

bag him in oxygen...

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“I will not

go to jail for you!”

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After ten long days Christophe

was slowly dying…

I will never know

if he suffered, but I

believe the dying process

usually involves suffering.

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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?

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Jill Lawson

Silver Spring, MD

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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.

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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.

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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.

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Parents must be told about this

deficit in medical knowledge

if they are to participate in the

process of informed consent.

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The pain these babies

(and families) suffer

is the most important issue.”

W.A. Silverman, MD

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Parents’ Concerns

--The Nursery Environment

and Nursery Policies

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Parents’ Concerns

-- Safety and Efficacy of

Neonatal Therapies

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The National Institute

for Child Health

and Human Development

(NICHD)

RFA-NICHD-85, Request for Cooperative Agreement Application. June 14, 1985

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“…often based on limited

knowledge of new modalities

not subjected to critical studies

prior to introduction and

acceptance...

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[where] therapeutic interventions

may change within months before

adequate studies of safety and

efficacy are initiated, much

less completed.”

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“Russian Roulette in the Nursery”

Silverman, W.A. Russian Roulette in the Nursery-- Again. Pediatrics 1982;69:380.

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Postnatal Steroids

•25% of <1500 gm infants

•50% of <800 gm infants

• Tens of thousands exposed

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Steroids:

Adverse Outcomes

•Hypertension

•Hyperglycemia (requiring insulin)

•Intestinal perforation

•Infection (including meningitis)

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Steroids:

Adverse Outcomes

•Cardiomyopathy

•Poor Weight Gain

•Poor head/brain growth

•Periventricular leukomalacia

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Steroids:

Adverse Outcomes (Long Term)

•Cardiovascular disease

•Immune system disorders

•Severe ROP

•Neurological and behavioral deficits

•Cerebral Palsy

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Barrington, K. The adverse neurodevelopmental effects of

postnatal steroids in the preterm infant: a systematic review of

RCTs.

BMC Pediatrics 2001;1;1.

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Steroids Cause:

>1,000 extra cases of

neurodevelopmental impairment

>1,600 extra cases of

cerebral palsy

in the US and Canada each year.

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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.

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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

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Another Area of Controversy:

Oxygen Levels and

Handicap

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“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.

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Another Area of Controversy:

Nutrition and Brain

Development

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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.

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Bishop et al.

Aluminum Neurotoxicity

in Preterm Infants

Receiving Intravenous-Feeding

Solutions.

New England Journal of Medicine 1997;

336:1557-61.

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“a vast uncontrolled experiment

undertaken without informed

consent and with possibly

undesirable results.” Jeffrey Maisels, MD

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Parents’ Concerns

•Lack of Follow Up

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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.

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Suzanne Calvello

Westchester County,

New York

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When Natalie was two, I was

asked to bring her back to the

NICU for a follow-up study.

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At the time, she was being

treated for cerebral palsy

by a world-famous neurologist;

for visual defects by a pediatric

ophthalmologist;

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…for ear and throat problems by

an ENT; for chronic pulmonary

disease by a pediatric

pulmonologist...

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…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.

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However, for the purposes of the

NICU follow-up study,

She was declared

NORMAL!

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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.

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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

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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.

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Evolution of Disability in

Children Born <26 Weeks Gestation and/or

<1000 grams

Before school age:

50% handicapped

Eventual independent living:

?

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Infant Health and Development Program

•$35 Million

• Home and Center-based

•Intensive intervention with parents and infants, birth to age 3

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Infant Health and Development Program

•874 LBW children

•336 enrolled in early intervention

•8 sites around the US

•$15,146 per child per year

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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.

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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

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Parents’ Concerns

•Lack of medical and societal commitment to the long term care of

NICU survivors

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Shay and David Eikner

Denver, Colorado

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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.

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During those ten years, what

stands out are the constant battles

to find Josh help and treatment.

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As his care became more

difficult and unsuccessful,

much of the medical

community backed away

in frustration.

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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.

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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.

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Parent/Professional Collaboration

•Information

•Communication

•Informed Choice

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Inform the Public

Realistic Information in:

•The Media

•The Schools

•Preconceptional and

Prenatal Care

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Routine Prenatal Care should include

•Introduction to the NICU &

NICU Policies

•Gestational-Age-Specific Statistics

•Ethical Options

•Prenatal Directives

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In the NICU: Give Parents Facts

•Access to Rounds

•Access to the Chart

•Access to Medical Articles and the Internet

•Access to other Families

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“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.”

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“Parents should have available to

them the same facts and

interpretations of those facts

as the staff.”

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Give the Facts Meaning

•Tapes of Parent/Staff Conferences

•Videos

•Discuss Parental versus Staff “Preferences”

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Would neonatal staff

want treatment

for their own

high risk babies?

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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.

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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.

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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.

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>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.

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Parent/Professional Collaboration

•Institutional Review Boards

• Neonatal research

•Communication training

•NICU policies

•Support for lactation and breastfeeding

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Parent/Professional Collaboration

•Follow-up Studies

• Ethics consultation and training

•Care in the community

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