The offer they can't refuse: parents and perinatal treatment decisions

doi:10.1016/j.siny.2008.03.004

Seminars in Fetal and Neonatal Medicine

Volume 13, Issue 5, October 2008, Pages 329-334

https://doi.org/10.1016/j.siny.2008.03.004 Get rights and content

Summary

Despite a widespread myth of parental autonomy in decision-making for extremely preterm neonates, families in the United States are often not given access to accurate information about the consequences of preterm birth, resuscitation and treatment, or about their ethical options. Professional, philosophical, and financial incentives for hospitals and neonatologists to provide intensive treatment may trump parental wishes in delivery rooms and neonatal units. Parents may also be intimidated by the atmosphere of intensive care and by the behavior of committed staff. Prenatal advance directives allow parents to receive information on outcomes, treatments, and options, including palliative care, ‘on their own turf’ and as a part of routine prenatal counseling. The use of directives and other techniques for transparency in obstetric and neonatal care could improve the process of informed parental choice.

Introduction

In delivery room crises, families are at the mercy of an ever-accelerating life-support technology and of their physicians' philosophies and motives concerning its use.¹

Twenty-five years ago I wrote these words in a letter to The New England Journal of Medicine. Sadly, they continue to describe the plight of parents of extremely preterm newborns in the United States.

During the past 25 years, the scope of neonatal life support has rapidly expanded, professional and financial motives for its use have become more compelling, and the philosophies of aggressive interventionists have prevailed. At the beginning of this era, routine treatment for infants of <26 weeks' gestation or birth weights < 750–800 g was controversial.² Today, aggressive treatment is common for infants born at or below 23 weeks' gestation with birth weights ≤ 500 g.³ Despite the widespread myth of parental autonomy, families in the United States have little informed input in decisions regarding resuscitation or treatment.4, 5, 6, 7, 8, 9, 10, 11

Section snippets

A ‘gray zone’ is established

My involvement with neonatology began in 1975 when our son was born very prematurely and endured a complex medical course that involved ethical decision-making. In 1983 I published a book for parents¹² and became involved both with the parent support movement and with the neonatal research community, acting as a liaison between the two. In 1992 I assembled a group of parents to bring their concerns about neonatology to an international conference of neonatologists and obstetricians.¹³ Chief

The gray zone is ignored

Despite biologic rationales and community and medical support for a gray area <26 weeks, this proposed boundary for parental decision-making has been largely ignored by neonatologists in the United States.7, 8, 9, 10, 11 Resuscitation to 22 weeks has become the default mode in most hospitals, even though most resuscitated infants will endure their treatment only to die or survive with permanent disability. As noted by Singh et al: ‘For most other patients (adults or older children) faced with

Life in the gray zone: is this what parents want?

When neonatologists are asked why they pushed the margins of viability below 26 weeks in the 1990s and beyond, they rarely cite therapeutic or financial considerations, but rather insist that treatment at ever-lower gestations is driven by parents.

To the extent that this is true, it can often be explained by parents who come into the delivery room and neonatal unit uninformed, or misinformed, about the consequences of premature birth and neonatal care.4, 5, 6, 7, 9, 10 A survey conducted in

Recommendations

To relocate decisions to the families' own turf, parents and professionals have suggested the use of prenatal advance directives as a part of routine prenatal care.6, 14, 79 These documents could be accompanied by statements on parental options from the AAP and ACOG, as well as week-by-week descriptions of fetal development and the consequences of delivery at each stage. The probability of brain abnormalities and common severe illnesses should be given.⁸⁷ The full spectrum of cognitive, motor,

References (91)

K. Orfali
Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive units
Soc Sci Med
(2004)
M.F. Whitfield et al.
Behavior, pain perception, and the extremely low-birth weight survivor
Clin Perinatol
(2000)
T.E. Inder et al.
Defining the nature of the cerebral abnormalities in the premature infant: a qualitative magnetic resonance imaging study
J Pediatr
(2003)
N.N. Finer et al.
Postnatal steroids: short term gain, long-term pain?
J Pediatr
(2000)
A.H. Jobe
Glucocorticoids in perinatal medicine:misguided rockets?
J Pediatr
(2000)
M. Hack et al.
Outcomes of children of extremely low birthweight and gestational age in the 1990s
Early Hum dev
(1999)
B.J. Bushman et al.
Does self-love or self-hate lead to violence?
J Res Pers
(2002)
P.V. Grootendorst et al.
Does it matter whom and how you ask? inter- and intra-rater agreement in the Ontario Health Survey
J Clin Epidemiol
(1997)
M.D. Brown et al.
Long-term and developmental outcomes of children with complex congenital heart disease
Clin Perinatol
(2005)
S. Saigal et al.
Comprehensive health status of extremely low birth weight children at eight years of age: comparison with a reference group
J Pediatr
(1994)

H. Harrison

The principles for family-centered neonatal care

Pediatrics

(1993)

Wisconsin Association for Perinatal Care

Position Statement: Guidelines for the responsible utilization of neonatal intensive care

Colorado Collective for Medical Decisions

Guidelines for the management of low birth weight/early gestational age newborns (23–26 weeks, 400–750 grams)

(3/20/1997)

American Academy of Pediatrics et al.

Perinatal care at the threshold of viability

Pediatrics

(1995)

Soll R.F. Vermont Oxford Network: clinical trials and follow-up. Presented at the Vermont Oxford Network 2006 Annual...

B.R. Vohr et al.

Neurodevelopmental outcomes of extremely low birth weight infants <32 weeks' gestation between 1993 and 1998

Pediatrics

(2005)

P. Hefferman et al.

Giving ‘moral distress’ a voice: ethical concerns among neonatal intensive care unit personnel

Camb Q Healthc Ethics

(1999)

J.H. Penticuff

The impact of the child abuse amendments on nursing staff and their care of handicapped newborns

K.J.S. Anand

Pain, plasticity, and premature birth: a prescription for permanent suffering?

Nature Medicine

(2000)

K.J. Anand et al.

Anesthetic agents and the immature brain: are these toxic or therapeutic?

Anesthesiology

(2004)

B.S. Peterson

Brain imaging studies of the anatomical and functional consequences of preterm birth for human brain development

Ann NY Acad Sci

(2003)

C. Limperopoulos et al.

Does cerebellar injury in premature infants contribute to the high prevalence of cognitive, learning and behavioral disability in survivors?

Pediatrics

(2007)

A. Messerschmidt et al.

Disruption of cerebellar development: potential complication of extreme prematurity

Am J Neuroradiol

(2005)

L.M. Kopelman et al.

Neonatologists judge the ‘Baby Doe’ regulations

N Engl J Med

(1988)

J.D. Lantos

Hooked on neonatology: a pediatrician wonders about NICUs' hidden cost of success

Health Affairs

(2001)

J. Simpson

Response to ‘Neonatal Viability in the 1990s: Held Hostage by Technology’ by Jonathan Muraskas, et al. and ‘Giving Moral Distress a Voice: Ethical Concerns among Neonatal Intensive Care Unit Personnel’ by Pam Hefferman and Steve Heilig (CQ Vol 8, No 2)

Camb Q Healthc Ethics

(1999)

W.A. Silverman

Is neonatal medicine in the United States out of step?

Pediatrics

(1993)

B.R. Vohr et al.

Neurodevelopmental and functional outcomes of extremely low birth weight infants in the National Institute of Child Health and Human Development Network, 1993–1994

Pediatrics

(2000)

H.C. Emsley et al.

Increased survival and deteriorating outcome in 23 to 25 week gestation infants, 1990–94 compared with 1984–89

Arch Dis Child Fetal Neonatal Ed.

(1998)

Cited by (47)

Prenatal counseling for extreme prematurity at the limit of viability: A scoping review
2022, Patient Education and Counseling
Citation Excerpt :
Studies have, for example, shown possible effects on prenatal counseling of physician bias towards parental socioeconomic status, sociodemographic characteristics, and the desiredness of the pregnancy [28,30]. Harrison then, warns for a different kind of physician bias [31]. She warns for bias with regard to motives for providing active care: “… the scope of neonatal life support has rapidly expanded, professional and financial motives for its use have become more compelling, and the philosophies of aggressive interventionists have prevailed.
To explore, based on the existing body of literature, main characteristics of prenatal counseling for parents at risk for extreme preterm birth.
A scoping review was conducted searching Embase, Medline, Web of Science, Cochrane, CINAHL, and Google Scholar.
46 articles were included. 27 of them were published between 2017 and 2021. More than half of them were conducted in the United States of America. Many different study designs were represented. The following characteristics were identified: personalization, parent-physician relationships, shared decision-making, physician bias, emotions, anxiety, psychosocial factors, parental values, religion, spirituality, hope, quality of life, and uncertainty.
Parental values are mentioned in 37 of the included articles. Besides this, uncertainty, shared decision-making, and emotions are most frequently mentioned in the literature. However, reflecting on the interrelation between all characteristics leads us to conclude that personalization is the most notable trend in prenatal counseling practices. More and more, it is valued to adjust the counseling to the parent(s).
This scoping review emphasizes again the complexity of prenatal counseling at the limit of viability. It offers an exploration of how it is currently approached, and reflects on how future research can contribute to optimizing it.
Prenatal counseling in extreme prematurity - Insight into preferences from experienced parents
2019, Patient Education and Counseling
Citation Excerpt :
The most important topics to discuss with parents (as described in Table 3A) can serve as a good starting point for the conversation – adjusting the level of detail to suit parents’ wishes. We are convinced of two important but different goals for the prenatal conversation: the first goal is decision-making (as proposed and implemented before [35–37]) and the second goal is helping the parents to prepare for future situations depending on the initial decision made. Although both goals may be combined in one conversation, different information may be needed for each goal and we make a more clear distinction on what content parents want for each goal as compared to what has been published before - counselors should be aware of this.
In-depth analysis of parental preferences in prenatal counseling in extreme prematurity.
A nationwide qualitative interview study among experienced parents of extremely premature babies born at 24^+0/7 – 24^+6/7 weeks of gestation. Semi-structured interviews were held until saturation, transcribed and qualitatively analyzed to search for parental counseling preferences.
Thirteen parents were included, most parents decided on active care. Organisation: Parents wanted counseling as soon as possible, and for various reasons they wanted more than one conversation. Supportive material to help visualize complex information was suggested to be helpful, preferably with adjustable levels of detail. An empathetic, honest style with commitment of the counselor was regarded important. Content: Understandable statistics should be used for those who want it. Parents needed different information with respect to the decision-making as opposed to being prepared for future situations. Decision-making: The preferred share of parents’ and doctors’ input in decision-making varied among parents and among situations. Parents expressed that their roles were to take responsibility for and protect their infant.
Various parental preferences for prenatal counseling were found.
Common parental preferences for the organisation, content and decision-making elements can provide a starting point for personalized prenatal counseling.
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
2018, Journal of Pediatrics
Citation Excerpt :
Additionally, the literature has shown that clinician involvement in shared decision making can affect perception of guilt or regret.26,27 It is unknown whether the parents in our study had low rates of reported regret owing to these factors or owing to, as some authors have described,28 parental rationalization of prior decisions as a coping mechanism or underreporting of difficulties in living with a disability. There are some limitations to this study.
To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as “worth it,” regardless of outcome.
Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus.
Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all.
No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.
Ethical implications of the use of decision aids for antenatal counseling at the limits of gestational viability
2018, Seminars in Fetal and Neonatal Medicine
Shared decision-making is a recent priority in neonatology. However, its implementation is at an early stage. Decision aids are tools designed to assist in shared decision-making. They help patients competently participate in making healthcare decisions. There are limited studies in neonatology on the formal use of decision aids as used in adult medicine. Decision aids are relatively new, even in adult medicine where they were pioneered; therefore, there is a lack of systematic oversight to their development and use. Despite evidence reporting a powerful effect on patients' decisions, decision aids are not subject to quality control, leading to potentially enormous ethical implications. These include: (i) possible introduction of developers' biases; (ii) use of outdated or incorrect information; (iii) misuse to steer a patient towards less expensive treatments; (iv) clinician liability if negative patient outcomes occur, since decision aids are currently not standard of care.
Extremely Low-Birth-Weight Infants
2018, Avery's Diseases of the Newborn: Tenth Edition
Extremely Low-Birth-Weight Infants
2017, Avery's Diseases of the Newborn, Tenth Edition

View all citing articles on Scopus

View full text

The offer they can't refuse: parents and perinatal treatment decisions

Summary

Introduction

Section snippets

A ‘gray zone’ is established

The gray zone is ignored

Life in the gray zone: is this what parents want?

Recommendations

Soc Sci Med

Clin Perinatol

J Pediatr

J Pediatr

J Pediatr

Early Hum dev

J Res Pers

J Clin Epidemiol

Clin Perinatol

J Pediatr

Biol Psychiatry

Early Hum Dev

Clin Perinatol

J Pediatr

Parents and handicapped infants

N Engl J Med

Viability, morbidity, and resource use among newborns of 501- to 800-gram birth weight

JAMA

Fetal infants: the fate of 4172 infants with birth weights of 401 to 500 grams – The Vermont Oxford Experience 1996–2000

Pediatrics

Autonomy gone awry: a cross-cultural study of parents' experiences in neonatal intensive care units

Theor Med

Thinking outside the box: prenatal care and the call for a prenatal advance directive

J Perinat Neonat Nurs

Delivery room resusciatation decisions for extremely low birthweight infants in California

J Perinatol

Resuscitation in the ‘gray zone’ of viability: determining physician preferences and predicting infant outcomes

Pediatrics

Parental consultation practices at the border of viability: a regional survey

Pediatrics

Comparison of mothers' and counselors' perceptions of predelivery counseling for extremely premature infants

Pediatrics

Decisions about delivery-room resuscitation (DRR) for premature infants at the limits of viability

PAS

The Premature Baby Book

The principles for family-centered neonatal care

Pediatrics

Position Statement: Guidelines for the responsible utilization of neonatal intensive care

Guidelines for the management of low birth weight/early gestational age newborns (23–26 weeks, 400–750 grams)

Perinatal care at the threshold of viability

Pediatrics

Neurodevelopmental outcomes of extremely low birth weight infants <32 weeks' gestation between 1993 and 1998

Pediatrics

Giving ‘moral distress’ a voice: ethical concerns among neonatal intensive care unit personnel

Camb Q Healthc Ethics

The impact of the child abuse amendments on nursing staff and their care of handicapped newborns

Pain, plasticity, and premature birth: a prescription for permanent suffering?

Nature Medicine

Anesthetic agents and the immature brain: are these toxic or therapeutic?

Anesthesiology

Brain imaging studies of the anatomical and functional consequences of preterm birth for human brain development

Ann NY Acad Sci

Does cerebellar injury in premature infants contribute to the high prevalence of cognitive, learning and behavioral disability in survivors?

Pediatrics

Disruption of cerebellar development: potential complication of extreme prematurity

Am J Neuroradiol

Neonatologists judge the ‘Baby Doe’ regulations

N Engl J Med

Hooked on neonatology: a pediatrician wonders about NICUs' hidden cost of success

Health Affairs

Response to ‘Neonatal Viability in the 1990s: Held Hostage by Technology’ by Jonathan Muraskas, et al. and ‘Giving Moral Distress a Voice: Ethical Concerns among Neonatal Intensive Care Unit Personnel’ by Pam Hefferman and Steve Heilig (CQ Vol 8, No 2)

Camb Q Healthc Ethics

Is neonatal medicine in the United States out of step?

Pediatrics

Neurodevelopmental and functional outcomes of extremely low birth weight infants in the National Institute of Child Health and Human Development Network, 1993–1994

Pediatrics

Increased survival and deteriorating outcome in 23 to 25 week gestation infants, 1990–94 compared with 1984–89

Arch Dis Child Fetal Neonatal Ed.