The offer they can't refuse: parents and perinatal treatment decisions
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,
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Cited by (47)
Prenatal counseling for extreme prematurity at the limit of viability: A scoping review
2022, Patient Education and CounselingCitation 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.
Prenatal counseling in extreme prematurity - Insight into preferences from experienced parents
2019, Patient Education and CounselingCitation 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.
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 PediatricsCitation 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.
Ethical implications of the use of decision aids for antenatal counseling at the limits of gestational viability
2018, Seminars in Fetal and Neonatal MedicineExtremely Low-Birth-Weight Infants
2018, Avery's Diseases of the Newborn: Tenth EditionExtremely Low-Birth-Weight Infants
2017, Avery's Diseases of the Newborn, Tenth Edition