Transcript The Principles for Family
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
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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
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 9
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 10
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 11
The Principles for Family-Centered Neonatal Care 12
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.
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Parents’ Concerns • Lack of Information • Exclusion from Decision-Making • Overtreatment of Babies • Pain and suffering of treatment
Sarah and Bob Thorson Minneapolis, MN 17
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.
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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…
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.
“At what point do we say enough is enough for this little boy?” 25
The neonatologist answered, “You don’t make those decisions!
We do!” 26
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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.” 30
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 34
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.
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 39
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
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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 48
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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. 53
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 62
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 64
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 72
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!” 85
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 90
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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 96
Parents’ Concerns --The Nursery Environment and Nursery Policies 97
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Parents’ Concerns -- Safety and Efficacy of Neonatal Therapies 100
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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 102
“…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.” 104
“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 106
Steroids: Adverse Outcomes •Hypertension •Hyperglycemia (requiring insulin) •Intestinal perforation •Infection (including meningitis) 107
Steroids: Adverse Outcomes •Cardiomyopathy •Poor Weight Gain •Poor head/brain growth •Periventricular leukomalacia 108
Steroids: Adverse Outcomes (Long Term) •Cardiovascular disease •Immune system disorders •Severe ROP •Neurological and behavioral deficits •Cerebral Palsy 109
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 113
Another Area of Controversy: Oxygen Levels and Handicap 114
“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 116
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 120
Parents’ Concerns •Lack of Follow Up 121
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 123
When Natalie was two, I was asked to bring her back to the NICU for a follow-up study. 124
At the time, she was being treated for cerebral palsy by a world-famous neurologist; for visual defects by a pediatric ophthalmologist; 125
…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 130
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. 131
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 3 133
Infant Health and Development Program •874 LBW children •336 enrolled in early intervention •8 sites around the US •$15,146 per child per year 134
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 136
Parents’ Concerns •Lack of medical and societal commitment to the long term care of NICU survivors 137
Shay and David Eikner Denver, Colorado 138
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. 140
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. 142
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 145
Inform the Public Realistic Information in: •The Media •The Schools •Preconceptional and Prenatal Care 146
Routine Prenatal Care should include •Introduction to the NICU & NICU Policies •Gestational-Age-Specific Statistics •Ethical Options •Prenatal Directives 147
In the NICU: Give Parents Facts •Access to Rounds •Access to the Chart •Access to Medical Articles and the Internet •Access to other Families 148
“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.” 149
“Parents should have available to them the same facts and interpretations of those facts as the staff.” 150
Give the Facts Meaning •Tapes of Parent/Staff Conferences •Videos •Discuss Parental versus Staff “Preferences” 151
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 high Taylor.
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 157
Parent/Professional Collaboration •Follow-up Studies • Ethics consultation and training •Care in the community 158
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