Search

Diagnostic genome sequencing (GS) in newborns may have many benefits. More accurate diagnosis could spur the development of innovative genomic therapies. A precise diagnosis could help doctors and parents anticipate clinical problems and inform a family's future reproductive choices. However, the integration of GS into neonatal care remains associated with a variety of ethical controversies, including concerns about informed consent, about interpreting uncertain results, about resource allocation and whether access to genomic services could exacerbate health disparities, and about the effect of genome diagnostics on people with disabilities. There also remains significant uncertainty about which babies should be tested and when and how the potential benefits of GS ought to be measured. Probably related to these challenges, some payors have been reluctant to cover the cost of GS for critically ill newborns. Much of the reluctance appears to turn on questions about the clinical benefit associated with GS and whether and for whom GS will be cost-effective. These situations point to the urgent need for careful assessments of the clinical utility of GS in critically ill infants. In this paper, we critically examine the ways in which the clinical utility of GS has been evaluated in this patient population. We focus on "change of management" (COM), a widely used measure of clinical utility for diagnostic GS. We suggest that this measure is often ambiguous because not all COMs can be attributed to genomic results and because not all COMs lead to patient benefit. Finally, we suggest ways that measurement of clinical utility could be improved., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objectives: To compare parental attitudes about short stature over time and determine possible factors that predict changes in attitudes., Study Design: At baseline (1993-1994), we surveyed parents about their attitudes regarding their children's height. We compared parents of children (aged 4-15 years) referred to endocrinologists (referred, 154) with those of children with heights <10th percentile seen by pediatricians during regular visits (control, 240). At follow-up (2008-2009), 103 control and 98 referred parents completed a similar survey. We then made a logistic regression analysis to observe changes in perception. Primary variables included self-esteem, treatment by peers, and ability to cope with current height., Results: At baseline, referred parents perceived a worse impact of short stature on their children than did controls. At follow-up, instead, referred parents were 3.8 times more likely to report improvement in self-esteem, 2.4 times more likely to report improved treatment from peers, and 5.7 times more likely to report overall ability to cope with height than were unreferred parents. Perception of psychosocial improvement was greater in the referred than the control group. Referral was a stronger predictor of an improved follow-up response than patients' current height or change in height., Conclusions: While incorporating parental attitudes into management decisions, clinicians should be aware that parental perceptions may change over time and that referral itself may lead parents to perceive psychosocial improvements over time., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Critically ill newborns receiving intensive and complex care may be subject to medical errors and adverse events. Like most physicians, neonatologists do not feel comfortable disclosing their errors and may need assistance in learning how to do so. Understanding useful models of error disclosure, and communication training, will likely be beneficial., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Doctors are required to notify Child Protective Services (CPS) if parents do not provide appropriate medical care for their children. But criteria for reporting medical neglect are vague. Which treatments properly fall within the realm of shared decision-making in which parents can decide whether to accept doctors' recommendations? Which treatments are so clearly in the child's interest that it would be neglectful to refuse them? When to report medical neglect concerns to CPS may be controversial. It would seem inhumane to allow a child to suffer because of parental refusal to administer proper analgesia. In this ethics rounds, we present a case of an adolescent with chronic pain who is terminally ill. Her parents were not adherent to recommended analgesia regimens. Her palliative care team had to decide whether to report the case to CPS., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2019 by the American Academy of Pediatrics.)

Over the past decade, there have been numerous cases around the world in which parents have used digital media to orchestrate public opposition to doctors' recommendations. Parents are not always "successful" with such efforts; these cases have mixed outcomes and, sometimes, unintended consequences for parents. In this article, we address the current lack of understanding of parents' goals, motivations, and rationalizations in initiating such campaigns. We analyze 12 cases in which parental digital media campaigns went viral that occurred between 2007 and 2018, with the aim of better understanding parents' motivations for going public. We identify 7 themes raised by parent-initiated digital media campaigns: (1) changing doctors' minds, (2) being heard, (3) feeling empowered, (4) buying more time, (5) raising public awareness, (6) feeling that they have done everything possible, and (7) financial gain. Greater attunement to these themes and what is driving parents in such conflicts may help to disrupt the highly adversarial narrative surrounding such cases. It may also inform how clinicians approach disagreements that cross a certain threshold of public interest at the bedside., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2019 by the American Academy of Pediatrics.)

We present a case in which a fetal diagnosis of complex congenital heart disease and trisomy 18 led to a series of decisions for an infant who was critically ill. The parents wanted everything done. The surgeons believed that surgery would be futile. The parents publicized the case on social media, which led to publicity and pressure on the hospital. The case reveals the intersection of parental values, clinical judgments, ethics consultation, insurance company decisions about reimbursement, and social media publicity. Together, these factors complicate the already delicate ethical deliberations and decisions., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2019 by the American Academy of Pediatrics.)

When a child needs surgery, both the surgeon and the anesthesiologist must obtain informed consent from the parents. In theory, each specialist obtains permission for their respective portion of the procedure, with the anesthesiologist only obtaining informed consent for the administration of anesthesia and management in the operating room and recovery room. However, he or she may occasionally realize that the parents have misunderstandings about what the surgery and perioperative course entail. In such cases, he or she must decide whether their role is only to discuss the issues related to anesthesia care or whether he or she should also clarify the range of expected outcomes and the postoperative course after surgery. We present a case in which such a dilemma arose and on which we sought experts in anesthesia and ethics to comment., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

This article draws on fiction, poetry, and memoir to suggest that for many people, tragic choices are best dealt with not through explicit conversations that directly confront difficult truths but, instead, through indirect and ambiguous conversations that only suggest what is most important. Telling the truth slant is not easier than telling it directly. It requires more imagination and perhaps more sensitivity to the parents' nonverbal cues. The underlying moral principles are the same in the 2 approaches. The values and preferences of the patient and the family should be given highest priority. But to respect those values and honor those preferences, doctors need to listen carefully to understand what parents are saying, what they are not saying, what they mean, and what they need. Sometimes they may be saying that there are things that they prefer not to discuss or decisions that would prefer not to affirm., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose, (Copyright © 2018 by the American Academy of Pediatrics.)

A 3-month-old boy with failure to thrive was referred to a nephrology clinic after a diagnostic workup for failure to thrive revealed a serum urea nitrogen level of 95 mg/dL and creatinine level of 3.6 mg/dL. A renal ultrasound revealed marked bilateral hydronephrosis with little remaining renal cortex in either kidney. A voiding cystourethrogram revealed evidence of posterior urethral valves. The child had no evident comorbidities. Fulguration of the valves was successfully performed but did not lead to improvement in kidney function. The nephrologists recommended the initiation of dialysis with the hope that the child would be able to receive a kidney transplant in the future. After careful consideration, the family stated that they did not want this child to suffer with a lifetime of dialysis and transplant care. They were also concerned about the impact of this child's illness on their other 2 children and their family. They requested that their son be provided with palliative care only. Experts in nephrology, bioethics, and critical care discuss the ethical issues raised by this parental request., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

We present a case of a fetal diagnosis of tricuspid atresia (TA). The pregnant woman and her husband requested that the baby be treated with only palliative care. The cardiologist did not think it would be appropriate to withhold life-prolonging surgery once the infant was born. The neonatologist argued that outcomes for TA are similar to those for hypoplastic left heart syndrome, and the standard practice at the institution was to allow parents to choose surgery or end-of-life care for those infants. The team requested an ethics consultation to assist in determining whether forgoing life-prolonging interventions in this case would be ethically supportable. In this article, we ask a pediatric intensivist, a pediatric cardiologist, and a neonatologist to discuss the ethics of withholding life-sustaining treatment of a baby with TA., (Copyright © 2016 by the American Academy of Pediatrics.)

One of the most divisive issues in pediatrics today concerns the proper response by pediatricians to parents who refuse routine childhood immunizations for their children. Many pediatricians refuse to care for such families. Others continue to provide care and continue to try to convince parents that the benefits of immunizations far outweigh the risks. Two of the most powerful arguments in favor of dismissing such parents are as follows: (1) their refusal suggests such lack of trust in the physicians' recommendations that it undermines the basis for a meaningful physician-patient-parent relationship; and (2) unimmunized children present an unacceptable risk to other children in the physicians' waiting rooms. This article examines those arguments., (Copyright © 2016 by the American Academy of Pediatrics.)

If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this disease. Although potentially lifesaving, prognosis of HSCT in SCID is variable depending on a number of host and donor factors. Of the survivors, many develop secondary problems such as chronic graft-versus-host disease or even second malignancies. Posttransplant care is complex and requires great effort from parents to adhere to difficult treatment regimens. In this article, we address the difficult ethical question of what to do if parents choose not to have their child with SCID undergo HSCT but prefer palliative care., (Copyright © 2016 by the American Academy of Pediatrics.)

A central principle of justice is that similar cases should be decided in similar ways. In pediatrics, however, there are cases in which 2 infants have similar diagnoses and prognoses, but their parents request different treatments. In this Ethics Rounds, we present such a situation that occurred in a single NICU. Three physician-ethicists analyze the issues., (Copyright © 2015 by the American Academy of Pediatrics.)

One of the most difficult experiences for any doctor or nurse is when they realize that they have made a mistake that has harmed a patient. In the past, mistakes were seldom disclosed to patients. The prevailing ethos was one of professional silence, secrecy, and shame. That has begun to change. Many professional organizations in both medicine and health law recommend full disclosure of mistakes and apologies for the harm that is caused. An atmosphere of openness and honesty leads to a culture of quality and safety. In this Ethics Rounds, we analyze the complex emotional and ethical issues that arise when doctors recognize that an error has occurred., (Copyright © 2015 by the American Academy of Pediatrics.)

Unlabelled: When physicians are asked for a consult for women in premature labour, they face a complex set of challenges. Policy statements recommend that women be given detailed information about the risks of various outcomes, including death, long-term disability and various specific neonatal problems. Both personal narratives and studies suggest that parents also base their decisions on factors other than the probabilistic facts about expected outcomes. Statistics are difficult to understand at any time. Rational decision-making may be difficult when taking life-and-death decisions. Furthermore, the role of emotions is not discussed in peri-viability guidelines., Conclusion: We argue against trying to tell parents every fact that we think might be relevant to their decision. This may be overwhelming for many parents. Instead, doctors should try to discern, on a case-by-case basis, what particular parents want and need. Information and delivery of information should be personalized. Unfortunately, evidence in this area is limited., (© 2012 The Author(s)/Acta Paediatrica © 2012 Foundation Acta Paediatrica.)

We argue that personal belief exemptions to the mandate for childhood immunizations should not be allowed. Parents who choose not to immunize their children put both their own children and other children at risk. Other children are at risk because unimmunized children go to school or day care when they are contagious but asymptomatic, exposing many more children to potentially dangerous infections. The risks to children from disease are much higher than the risks of vaccines. There are, of course, some bona fide reasons why children should not be immunized. Some children have known allergies or other medical contraindications to certain immunizations. Immunization refusals based on parental beliefs, however, do not fall into this category. In those cases, children are denied the protection of immunizations without any medical or scientific justification. By eliminating personal belief exemptions to those childhood vaccines associated with contagious diseases that have high rates of childhood mortality, we would better protect children and would more fairly spread the burdens of this important public health program.

Objective: To characterize the knowledge, attitudes, and beliefs (KAB) regarding childhood obesity among parents of Latino preschoolers., Methods: Three hundred sixty-nine Mexican immigrant parents of children ages 2-5 were interviewed. Children were weighed and measured., Results: Parents underestimated their own child's weight status and had high levels of perceived control over their children's eating and activity behaviors. Parents of overweight (>95%ile-for-age-and-sex BMI) versus nonoverweight (<95%ile BMI) children did not differ in their beliefs about ideal child body size., Conclusion: Latino parents of overweight children did not differ from parents of nonoverweight children with respect to their KAB about childhood obesity.