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1.
Pediatrics ; 146(1)2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32591437

RESUMO

Clinicians in the United States today regularly face dilemmas about health disparities. Many patients and families cannot afford the medical care that doctors recommend. These problems are most stark when the medical care that is needed is lifesaving and expensive and involves scarce resources. Transplants are the best example of this. The most ethically disturbing situations occur when an undocumented immigrant child needs a transplant. We present such a case and analyze the ethical, legal, and policy issues that arise.

2.
Hastings Cent Rep ; 50(3): 79-80, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32596905

RESUMO

The pandemic creates unprecedented challenges to society and to health care systems around the world. Like all crises, these provide a unique opportunity to rethink the fundamental limiting assumptions and institutional inertia of our established systems. These inertial assumptions have obscured deeply rooted problems in health care and deflected attempts to address them. As hospitals begin to welcome all patients back, they should resist the temptation to go back to business as usual. Instead, they should retain the more deliberative, explicit, and transparent ways of thinking that have informed the development of crisis standards of care. The key lesson to be learned from those exercises in rational deliberation is that justice must be the ethical foundation of all standards of care. Justice demands that hospitals take a safety-net approach to providing services that prioritizes the most vulnerable segments of society, continue to expand telemedicine in ways that improve access without exacerbating disparities, invest in community-based care, and fully staff hospitals and clinics on nights and weekends.

3.
Pediatr Cardiol ; 2020 May 18.
Artigo em Inglês | MEDLINE | ID: mdl-32419096

RESUMO

In order to evaluate physicians' willingness to seek legal action to mandate surgery when parents refuse surgery for various congenital heart lesions, we surveyed pediatric cardiologists and cardiovascular surgeons at 4 children's hospitals. We asked whether physicians would support parental refusal of surgery for specific heart defects and, if not, whether they would seek legal action to mandate surgery. We then analyzed associations between physicians' willingness to mandate surgery and national operative mortality rates for each lesion. We surveyed 126 cardiologists and 9 cardiac surgeons at four tertiary referral centers. Overall response rate was 77%. Greater than 70% of physicians would seek legal action and mandate surgery for the following lesions: ventricular septal defect, coarctation of the aorta, complete atrioventricular canal, transposition of the great arteries, tetralogy of Fallot, and unobstructed total anomalous pulmonary venous return. Surgery for all of these lesions has reported mortality rates of < 5%. Physicians were less likely to seek legal action when parents refused surgery for Shone complex, any single ventricle lesion, or any congenital heart disease accompanied by Trisomy 13 or Trisomy 18. Among experts in pediatric cardiology, there is widespread agreement about the appropriate response to parental refusal of surgery for most congenital heart lesions, and these lesions tended to be heart defects with lower surgical mortality rates. Lesions for which there was greater consensus among experts were those with the best outcomes. There was less consensus for lesions with higher mortality rates. Such surveys, revealing disagreement among expert professionals, can provide an operational definition of the current professional "gray zone" in which parental preferences should determine treatment.

5.
Pediatrics ; 145(6)2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-32398328

RESUMO

A 15-year-old girl is scheduled to undergo an upper lobectomy to debulk metastatic Ewing sarcoma. The anesthesiologist recommended placement of a thoracic epidural catheter to provide postoperative analgesia. The patient did not want a needle to be placed near her spine. She was terrified that the procedure would be painful and that it might paralyze her. Although the anesthesiologist reassured her that sedation and local anesthesia would make the procedure comfortable, she remained vehemently opposed to the epidural procedure. The parents spoke privately to the anesthesiologist and asked for placement of the epidural after she was asleep. They firmly believed that this would provide optimal postoperative analgesia and thus would be in her best interest. Experts discuss the pros and cons of siding with the patient or parents.

6.
Pediatrics ; 2020 May 19.
Artigo em Inglês | MEDLINE | ID: mdl-32430441

RESUMO

To control the spread of severe acute respiratory syndrome coronavirus 2, the virus responsible for coronavirus disease 2019, many hospitals have strict visitor restriction policies. These policies often prohibit both parents from visiting at the same time or having grandparents or other family members visit at all. We discuss cases in which such policies created ethical dilemmas and possibly called for compassionate exceptions from the general rules.

7.
Pediatrics ; 145(5)2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32241824

RESUMO

Multiple births are increasing in frequency related to advanced maternal age and fertility treatments, and they have an increased risk for congenital anomalies compared to singleton births. However, twins have the same congenital anomalies <15% of the time. Thus, having multiple births with discordant anomalies is a growing challenge for neonatologists. Although external anomalies can often be spotted quickly at delivery or sex differences between multiples can rapidly identify those with internal anomalies described on prenatal ultrasound, we present a case of male multiples, who would optimally receive different initial resuscitation strategies on the basis of the presence or absence of an internal anomaly. The similar size of 4 extremely preterm quadruplets raises concern for whether accurate, immediate identification of 1 neonate with a congenital diaphragmatic hernia will be reliable in the delivery room. Clinicians discuss the ethical considerations of an "all for one" approach to this resuscitation.

10.
11.
Pediatrics ; 145(3)2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32107284

RESUMO

Medical decision-making in children is not a static process. In pediatrics, parents and health professionals actively participate in clinical decision-making. They always consider what is in the child's best interest and sometimes weigh that against other considerations. As children get older, the level of participation in this process may change according to their own cognitive development and maturity level. In this article, we present a case of an adolescent with a life-limiting condition at the end of life. He wants to participate in his health management and speak for himself. He does not always prefer interventions that his parents think are best. Health care practitioners must include mature minors in the decision-making process and be willing to listen to their voices.


Assuntos
Tomada de Decisões , Remoção de Dispositivo/ética , Gastrostomia/instrumentação , Direitos do Paciente/ética , Autonomia Pessoal , Recusa do Paciente ao Tratamento , Adolescente , Humanos , Masculino
12.
J Pediatr ; 220: 237-240, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32037150

RESUMO

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.

14.
Pediatrics ; 145(2)2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31974217

RESUMO

Many transgender and gender-diverse people have a gender identity that does not conform to the binary categories of male or female; they have a nonbinary gender. Some nonbinary individuals are most comfortable with an androgynous gender expression. For those who have not yet fully progressed through puberty, puberty suppression with gonadotrophin-releasing hormone agonists can support an androgynous appearance. Although such treatment is shown to ameliorate the gender dysphoria and serious mental health issues commonly seen in transgender and gender-diverse young people, long-term use of puberty-suppressing medications carries physical health risks and raises various ethical dilemmas. In this Ethics Rounds, we analyze a case that raised issues about prolonged pubertal suppression for a patient with a nonbinary gender.


Assuntos
Disforia de Gênero/tratamento farmacológico , Consentimento Informado por Menores/ética , Consentimento dos Pais/ética , Puberdade/efeitos dos fármacos , Moduladores Seletivos de Receptor Estrogênico/uso terapêutico , Minorias Sexuais e de Gênero/psicologia , Adolescente , Ansiedade/tratamento farmacológico , Temas Bioéticos , Densidade Óssea/efeitos dos fármacos , Tomada de Decisão Clínica/ética , Esquema de Medicação , Ética Médica , Disforia de Gênero/psicologia , Fraturas do Quadril/etiologia , Humanos , Autonomia Pessoal
15.
Bioethics ; 34(3): 281-287, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31577853

RESUMO

In this paper, we examine healthcare organizations' responses to high profile cases of doctor-parent disagreement. We argue that, once a conflict crosses a certain threshold of public interest, the stakes of the disagreement change in important ways. They are no longer only the stakes of the child's interests or who has decision-making authority, but also the stakes of public trust in healthcare practitioners and organizations and the wide scale spread of medical misinformation. These higher stakes call for robust organization-level responses. There are responsible and thoughtful ways for healthcare organizations to directly engage with these cases. Hospitals should seek an alliance with the parents around the goal of public discussion and utilize web-based platforms to provide the public with information about medical conditions, experimental treatments, and how clinical ethics deliberation in hospitals works. We outline five important lessons for healthcare organizations to keep in mind when responding to such cases. Approached with care, these cases could become "teachable moments" for both healthcare organizations and society.

16.
Pediatrics ; 144(6)2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31690711

RESUMO

We present the case of a 2-year-old boy with epidermolysis bullosa and supraglottic stenosis whose parents refuse an elective tracheostomy because of the significant care the tracheostomy would require. The patient's family lives in a rural area with few health care resources and his parents are already handling hours of daily skin care for his epidermolysis bullosa. In an attempt to convince the parents to pursue the intervention, the medical team recommends that the family move to an area with additional resources to assist in the child's care. The parents refuse to move, citing the many benefits their home environment provides for their son. The medical team calls an ethics consultation, questioning whether this decision constitutes medical neglect. This case raises important questions about medical decision-making in pediatrics. First, is a parent's refusal of a recommended medical intervention because it would require moving their family to a new environment a reasonable decision? Second, how broadly can parents define their child's best interest? Should only physical interests be included when making medical decisions? Is there a limit to what can be considered a relevant interest? Third, can parents only consider the interests of the individual child, or can they consider the interests of other members of the family? Finally, what is the threshold for overruling a parental decision? Is it whenever the parent's definition of a patient's best interest is different from the medical team's, or do other criteria have to be met?


Assuntos
Tomada de Decisão Clínica/ética , Assistência à Saúde/ética , Epidermólise Bolhosa/terapia , Serviços de Saúde Rural/ética , Supraglotite/terapia , Pré-Escolar , Assistência à Saúde/métodos , Epidermólise Bolhosa/diagnóstico , Humanos , Masculino , Pais/psicologia , População Rural , Supraglotite/diagnóstico
17.
Neurosurg Focus ; 47(4): E8, 2019 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-31574481

RESUMO

OBJECTIVE: The Management of Myelomeningocele Study (MOMS) compared prenatal with postnatal surgery for myelomeningocele (MMC). The present study sought to determine how MOMS influenced the clinical recommendations of pediatric neurosurgeons, how surgeons' risk tolerance affected their views, how their views compare to those of their colleagues in other specialties, and how their management of hydrocephalus compares to the guidelines used in the MOMS trial. METHODS: A cross-sectional survey was sent to all 154 pediatric neurosurgeons in the American Society of Pediatric Neurosurgeons. The effect of surgeons' risk tolerance on opinions and counseling of prenatal closure was determined by using ordered logistic regression. RESULTS: Compared to postnatal closure, 71% of responding pediatric neurosurgeons viewed prenatal closure as either "very favorable" or "somewhat favorable," and 51% reported being more likely to recommend prenatal surgery in light of MOMS. Compared to pediatric surgeons, neonatologists, and maternal-fetal medicine specialists, pediatric neurosurgeons viewed prenatal MMC repair less favorably (p < 0.001). Responders who believed the surgical risks were high were less likely to view prenatal surgery favorably and were also less likely to recommend prenatal surgery (p < 0.001). The management of hydrocephalus was variable, with 60% of responders using endoscopic third ventriculostomy in addition to ventriculoperitoneal shunts. CONCLUSIONS: The majority of pediatric neurosurgeons have a favorable view of prenatal surgery for MMC following MOMS, although less so than in other specialties. The reported acceptability of surgical risks was strongly predictive of prenatal counseling. Variation in the management of hydrocephalus may impact outcomes following prenatal closure.

18.
Pediatrics ; 144(5)2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31597691

RESUMO

Social media pervades all aspects of our lives. In medicine, it has changed the ways that patients and parents get health information, advocate for particular treatments for themselves and their children, and raise money for expensive treatments. In this Ethics Rounds, we present a case in which the use of social media seemed to cross the boundaries of acceptable professionalism. What should the ground rules be for doctors who are tempted to give medical opinions online about patients whom they have never seen?


Assuntos
Ética Médica , Médicos/ética , Profissionalismo/ética , Encaminhamento e Consulta/ética , Mídias Sociais/ética , Adolescente , Humanos , Relações Interprofissionais/ética , Masculino
19.
Semin Fetal Neonatal Med ; 24(6): 101029, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31606328

RESUMO

There is very little law-either case law or statutory law - that regulates delivery room decisions about resuscitation of critically ill newborns. Most of the case law that exists is decades old. Thus, physicians cannot look to the law for much guidance about what is permissible or prohibited. Local hospital policies and professional society statements provide some guidance, but they cannot be all-inclusive and encompass all potentially encountered scenarios. Ultimately, the physician, the medical team, and the parents must try to reach a shared decision about the best course of action for each individual infant and each unique family. In this paper, we review some of the case law that may be applicable to such decisions and make recommendations about how decisions should be made.

20.
Semin Perinatol ; 43(8): 151182, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31519367

RESUMO

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.

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