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Table 1 Point—Counterpoint dialogic summary of the principal viewpoints and issues of extremely premature birth—Neonatal Intensive Care versus Palliative Care

From: Extremely premature birth bioethical decision-making supported by dialogics and pragmatism

Neonatal intensive care for extremely premature infants

Palliative care for extremely premature infants

Gestational age estimates are imprecise, ± 1 week, the 23 week infant might be 24 weeks

Gestational age estimates are imprecise, ± 1 week, the 24 week infant might be 23 weeks

Gestational age is the most common prognosticator of mortality and morbidity but can be imprecise and is not the sole determinant of outcomes

Birth weight correlates with mortality and NDI as effectively as gestational age, and ultrasound can reasonably estimate fetal weight. Sex, multiple gestation, fetal anatomic survey, maternal biomarkers, medical, and demographic descriptors also augment prognostication

Guidelines based upon gestational age are biologically artificial. It is arbitrary to recommend intensive care at 24 0/7 weeks but palliative care at 23 6/7 weeks

All published guidelines use gestational age as a framework. Inflexible gestational age line-of-demarcation arguments resist logic. It is arbitrary to recommend palliative care at 21 6/7 weeks but provide NICU care at 22 0/7 weeks

Survival is a problematic forecast in NICUs that promote palliative care, a self-fulfilling prophecy of mortality

Shared decision-making and family preference are compromised in hospitals that mandate NICU care. This is a self-fulfilling prophecy of pain, suffering, morbidity, late hospital mortality, and NDI

All EPIs should be resuscitated and re-evaluated daily; life support withdrawal is morally acceptable only after a “trial of life” which might improve prognostication

EPIs with late hospital mortality or subsequent NDI do not consistently have early, severe morbidities that prompt stopping life support. Withdrawing life support later in the course can contradict the rationale for the initial intensive care, this is ethically inconsistent

EPIs can survive and be healthy, this is difficult to determine in the delivery room or first days of life

EPIs can appear stable in the delivery room or first days of life but then suffer major morbidities, late mortality, and/or NDI. This prediction is difficult to make accurately in the delivery room or first days of life

NICU outcomes presented as percentages can be poorly understood by families and might be misleading if biased by information-framing

Every authoritative consensus statement recommends shared decision-making enhanced by evidence-based short and long-term outcomes review. This requires practical use of numbers, proportions, and percentages presented clearly

Medical science cannot advance unless therapeutic frontiers are pushed. Withholding possibly beneficial technology is coercive and restrictive, a power differential that risks abuse

Pregnant women and families have the right to decline unproven, or high-risk maternal and NICU care therapies because of the subsequent pain, late mortality, NDI, chronic health issues, and other unforeseen consequences

Survival of EPIs has improved over time and might continue if we keep trying

Detailed descriptions of pain, and NICU or post-discharge deaths are inadequately described in publications. How much suffering and how many deaths justify unproven, experimental therapies is not a consensus agreement among physicians, families, and society

Withholding and withdrawing life support are morally equivalent

Withholding and withdrawing life support are moral equivalence theories, but are not ethically equivalent realities to all families or providers. Physicians and families recognize when early institution of palliative care minimizes unnecessary pain, suffering, and moral distress

The core issue: do we have a right or defensible argument to deny a trial of life support to an EPI, or any sentient human?

The core issue: is a pregnant woman, because she may deliver an EPI through no choice of her own, morally required to assent to NICU care regardless of family circumstance, preferences, risks to her well-being, and uncertain, suboptimal pediatric long-term health and neurodevelopment?

A principal challenge with authentic shared decision-making is minimizing physician bias

A principal challenge with authentic shared decision-making is ensuring families know their informed decision must often be made in a time-sensitive fashion, and that no decision is a decision

All human life is sacred, God should play the principal role in deciding which person lives and who dies. Medical therapy is an extension of supernatural power

Sacred is a religious concept not shared by all families and physicians, who differ by creed or culture, or might be non-theists. All human beings are not viewed as “persons” with equivalent rights by every family. This distinction is made with major birth defects where there is broad agreement of limitations of NICU therapies

How can the “best interests of an infant” ever be death? Unless early death is near certain, NICU care should be attempted

Death versus pain, suffering, and significant NDI are incommensurable outcomes, reflective of value pluralism inherent to the human condition and a continual source of conflict. “Best interests of the woman, family, and infant” is a more realistic, inclusive consideration

Palliative care can be perceived as giving up, might have a variable course, and be associated with subsequent family regret

Palliative care can be delivered as well-planned support, a humane process of dignity, family advocacy, and the reduction of pain and suffering. NICU care, pain, late mortality, and NDI can be associated with subsequent family regret

Some countries do not permit therapeutic abortion at gestational ages that EPIs receive intensive care, so palliative care is inconsistent with these laws

Some countries do permit therapeutic abortion at gestational ages that EPIs receive intensive care, so mandating intensive care is inconsistent with these laws

Palliative care leads to the death of infants without giving them a chance. They could possibly be healthy children, or with chronic medical conditions yet rate their lives as good

Mandated NICU care is of little personal risk to physicians. Surviving EPIs may be chronically unhealthy. It is the families who bear the risks, the principal costs, the disruption, and it is EPIs who physically suffer

Religious families may prefer NICU care for their infant, for reasons not necessarily evidence-based. We generally respect their sentiments and rights. Variability exists both between and within many faith traditions

Religious families may prefer palliative care for their infant, for reasons not necessarily evidence-based. We generally respect their sentiments and rights. Variability exists both between and within many faith traditions

Women who have extra-ordinary pregnancy circumstances, advanced maternal age, infertility, or serious medical conditions should be supported if they desire NICU care for their EPI

Women who have extra-ordinary pregnancy circumstances, advanced maternal age, infertility, or serious medical conditions should not be expected to desire nor choose NICU care for their EPI

Wrongful EPI death lawsuits have been litigated and settled

Wrongful EPI life lawsuits have been litigated and settled

Physicians and bioethicists who advocate palliative care options might represent a minority position within NICU care proponents, especially among neonatologists

Physicians and bioethicists who are NICU care proponents emphasize their disagreements with palliative care advocates, rather than acknowledging that their fundamental disagreements are with pregnant women and families who choose palliative care

Physicians who favor palliative care may be influenced by lack of strong interest in EPI care, fixed salary structure regardless of census, inferior bedside skills, burnout, religious and cultural beliefs not shared by families, or lack of compassion for those with NDI

Physicians who favor NICU care may be influenced by prestige, research interests, career advancement dependent upon EPI care, financial incentives based upon census, religious and cultural beliefs not shared by families, and attraction to hero-victim relationships

Physicians who have children or are parents of EPIs might have unique insights, and their shared experience can be relevant to other providers, pregnant women, and families

Insight, which some physicians might have based upon their own child or EPI, is distinct from moral authority, of which physicians have no more credibility than others. Physicians must be vigilant to not imply they have ethical prowess whether they have children or not

The death of an EPI is not morally less consequential than the death of a ten-year-old, or a forty-year-old. Palliative care devalues EPI lives as compared to older children who would receive intensive care for comparable conditions

Judgments about meaning or morality of EPI deaths as compared to deaths of older children or adults are incommensurable value judgments, culturally divergent, and not necessarily shared by those families that have experienced one or the other, or both

The cost of EPI care is proportionately small compared to what is spent on adults with similar or even worse prognoses. Acceptable quality years of life can result from EPI intensive care as compared to adult intensive care

Resources required for EPI care are diverted from other healthcare needs that are more cost-effective for women and children, which diminishes population health. Financial burdens to families for long-term EPI care is enormous, and poorly supported. The lost opportunity costs for families are seldom considered

Adults with critical illnesses that have similar risks of mortality and morbidity as EPI conditions might receive intensive care without controversy. It is unjust to treat EPIs differently

Adults with critical illnesses that have similar risks of mortality and morbidity as EPIs are allowed (or designated surrogates) to choose palliative care without controversy

Many surviving EPIs do not have “Significant NDI”, this justifies broad application of intensive care. If approximately 35–45% of surviving EPIs have significant NDI this implies 55–65% do not

“Significant NDI” is defined as a composite cognitive and motor assessment > 1–2 SD below the mean. A large portion of surviving EPIs have NDI complicated by a broad spectrum of neurobehavioral and psychiatric challenges. There is no significant secular time trend of improvement in NDI in 22–24 week infants in the past 30 years

Some adolescents and adults with NDI rate their quality of life highly and have similar achievement levels and social functioning as term infants

Some adolescents and adults with NDI rate their quality of life significantly lower than those persons born at term. Parents generally rate EPI quality of life lower with time. Quality of life assessments are unobtainable from persons with severe NDI

Persons with NDI should not be judged as less valuable than those without NDI. It is arbitrary to decide what type of neurologic functioning is “normal” versus “handicapped”

Brain injury prevention is an unequivocal research and quality improvement priority. NDI is widely accepted as undesirable. NDI is not a “neurodiversity” condition pregnant women or families would choose for their child

Palliative care advocates may not demonstrate compassion for EPIs or their families. Lack of empathy can lead to short-term convenience decisions, even apathy. Lack of sympathetic caring perpetuates nihilism

Intensive care advocates conflate compassion and pity. Pity enhances physicians’ status by reducing families to neediness. Physicians should not create meaning for themselves by using power over those they designate as needing help. This perpetuates nihilism

Uncertainty means we do not know what will happen and is typically the physician’s focus. Ambivalence and ambiguity can generate intensive care as the default recommendation

Risk is the product of something harmful occurring multiplied by the probability it will happen (which incorporates uncertainty). This is the pregnant woman and families’ focus. Ambivalence and ambiguity can generate palliative care preference

Some physicians and ethicists promote the descriptor “Gray Zone”, an undefined, but assumed shrinking estimate of extreme prematurity. This time period is characterized by NICU outcomes being so uncertain and risky that family choice of palliative care or NICU care is reasonable

Some physicians and ethicists prefer the descriptor “Zone of Parental Discretion”, a variably-sized-by-culture, ethically-protected-by-circumstance, time period of extreme prematurity. NICU outcomes are so uncertain and risky that family choice of palliative care or NICU care is reasonable