An index for the evaluation of growth in children

Conclusion Proper assessment of a child's growth as time passes is essential as a guide for treatment of disease or disability. The best possible progress for the child who has genetic or acquired handicaps is promoted in various ways, but principally by helping the parents to understand the particular needs of their child at each stage and to protect it from unfavourable environmental influences. A knowledge of growth and development of the child is of basic importance to the physician who would attempt to care for children and to advise parents as to normality of their progress. The index developed here is a step towards this goal. It helps the physician to assess the growth of the child from the clinical point of view and the parents to evaluate the development of their child. It is hoped that the index will increase the knowledge of both the physician and the parents in understanding the growth pattern of children. From the Department of Preventive and Social Medicine. G.R. Medical College, Gwalior.     

Withholding and withdrawing neonatal intensive care

Decisions relating to the withholding, limiting or withdrawal of intensive care support are a necessary part of a neonatal unit's practice.Health professionals and parents have a duty to act in partnership in the infant's best interests. Clinical guidelines and the law help define circumstances when it is ethically and legally acceptable to consider withholding or withdrawing treatment. Good practice dictates that a consensus should be achieved both between unit staff themselves and with parents. Senior staff involvement and effective, timely communication is essential to achieve this and only rarely will the law need to be involved. An honest, consistent approach is essential and discussions must be carefully documented. Parents need to be provided with sufficient information in a way that they can understand and assimilate, and most parents wish to be involved in both the decision-making and the dying process; ways of achieving this are discussed.Follow-up is important. Primary healthcare professionals need to be involved early in the process and contact should be established by someone from the unit well known to the parents within 2 months of the death of their child.     

Physician-family partnerships: the adaptive practice model

In the traditional medical model, the physician, acting in the best interests of the patient, assumes full responsibility for delivering information, making decisions about treatment, and providing care. This model is not suitable for chronic care or preventive health maintenance. Recent alternatives to this model include participatory decision-making and family-centered care, clinical approaches in which the patient and family share the responsibility for decision-making with the physician. Research has demonstrated that patients and families vary in their willingness to make decisions about care. The Adaptive Practice model describes how compassionate and effective medical practice ranges from traditional hierarchical relationships to full patient or family control, depending on the situation. Four different clinical approaches--directing, teaching, collaborating, and supporting--result from variations in the direction of leadership and in the degree of interaction in the situation. Each approach is suitable for specific situations. For example, directing is appropriate in emergencies or crises. Supporting is appropriate when families are both knowledgeable and motivated to make decisions that affect their quality of life. Sensitive physicians assess the situation, negotiate an approach suitable to the family's and patient's needs at the time, and adjust their approach as the partnership evolves. The Adaptive Practice model provides a structure for analyzing clinical situations, choosing clinical approaches, and understanding problems in physician-family relationships when they arise.     

Barriers to the identification of children with attention deficit/hyperactivity disorder

BACKGROUND: In most countries, the majority of children with attention deficit/hyperactivity disorder (ADHD) are undiagnosed. In the United Kingdom, a major barrier to accessing specialist services is the limited recognition of disorders by general practitioners. However, it is unclear whether there are also barriers at other stages of the help-seeking process. For children with ADHD, this study aims to examine the correlates of the different stages of help-seeking. METHOD: Children with ADHD (n = 232) were identified from the 1999 British Child and Adolescent Mental Health Survey. Rates and correlates of parental recognition of child mental health problems and contact with services for these problems were examined. Children who had used particular types of services were compared with those who had not. RESULTS: Most (80%) parents of children with ADHD recognise that their child has a problem although few (35%) construe this in terms of hyperactivity. The impact of the symptoms on key adults, rather than child factors, best predicted parental recognition of problems. Most parents had been in contact with education-based professionals but few had consulted primary care for these problems or had sought help from relevant specialist health services. Parental recognition of problems and perceived burden, rather than child factors, were the main correlates of contact with services. Parental views that their child has hyperactivity were associated with greater severity of symptoms. CONCLUSIONS: The main barrier to care for ADHD is the limited presentation of these problems to primary care. The majority of parents discuss their concerns with professionals based in education services. There is a need for parental education about ADHD and for health service input to support education professionals in their contact with concerned parents.     

Legal regulations to protect under-aged donors issued by E.U. Member Countries. Analysis of the present situation and proposals

Allogeneic bone marrow transplantation in the E.U. is a routine treatment which requires specific legal procedures to protect under-aged donors. The European Council (5/29/1978) decreed the guidelines concerning organ transplantation for the Member Countries. These guidelines included obtaining written consent from the donor or his/her guardian. The International Convention on children s rights (New York 11/20/1989, art. 12) stated that the minor has the right to give his/her opinion, which must be taken into consideration. Currently, though legal guidelines vary among Member Countries, all require the parents or guardian s written consent. In France, an ethics committee (L. 76-1181/1976) must inform the minor about the consequences of the procedure, respect his/her will and obtain consent. In Luxembourg, the Department of Health requires written consent as well as authorization by three experts, including two physicians. In Spain an ethics committee must obtain the minor s consent which is then approved by a government authority and counter-signed by a physician. In UK an N.H.S. directive (1st Aug. 1993) states that as of 16 years of age donors must give consent. In Germany minors over 14 are allowed to give consent. A legal guarantee is required when the recipient is a parent to avoid conflict of interest. In Belgium minors between 15 and 18 require witnessed written consent, counter-signed by the guardian and approved by a physician. Married donors below 21 need the consenting adult s approval. In Portugal verbal consent by the minor and the guardian is sufficient. In Denmark the guardian s written consent is needed. In Italy a law is being prepared to best protect minors. In conclusion it would be useful for the European Council to decree the detailed legal guidelines and require greater uniformity among the E.U. Countries.     

End-of-life decisions in abusive head trauma

Abusive head trauma is a significant and tragic cause of morbidity and mortality in infants and its victims often have a poor prognosis. With such high rates of morbidity and mortality, health care providers and parents are often faced with the decision to continue or discontinue life support for an affected child. Sadly, however, this decision becomes complicated when parents are accused of causing the victim-child's current state. In this situation, if life support is withdrawn, criminal charges for the accused may escalate from assault to murder. This escalation of legal charges creates a conflict of interest for accused parents. As a result, parents have a strong incentive to avoid murder charges by using their parental decision-making rights to keep the child alive, even when treatment is deemed futile or inhumane. In this article, we discuss the legal challenges health care providers may face when parents place their interest above their child's. We also propose solutions that give greater deference to the rights and interest of these critically ill children while still preserving protected parental rights.     

The legal implications of physician trainees and non-physician practitioners for the emergency physician

Emergency physicians (EPs) often supervise physician trainees and non-physician practitioners (physician assistants or nurse practitioners) in the emergency department (ED). As a supervisor, the EP must guide clinical care, screen for medical acts of negligence, and promptly correct them to avoid harm to a patient. The legal liability of the EP can vary if harm is caused to a patient through the negligence of a physician trainee or non-physician practitioner. Direct or indirect (vicarious) liability may be ascribed to the ED attending physician based on his level of involvement in patient care and/or his specific role as a supervisor. Although the liability attached may be extensive, it is not limitless. The EP is most protected from an act of negligence by a physician trainee or non-physician practitioner when his level of patient contact and supervision are appropriately documented. The precise limits of liability for the EP may be defined more clearly in the future and are certain to vary between local jurisdictions.     

Frühkindliche Regulationsstörungen

Parent-infant/toddler counseling and psychotherapy in cases of infant regulatory disorders have the following three aims: to resolve the child’s behavioral problems, to relieve overstrained parents, and to help counteract distressed parent–infant interactions and disturbed parent–infant relationships. For the parents, pediatricians act as primary, familiar contact persons and consultants and can recommend special health care centers if necessary; therefore, their role is important. Using the example of excessive infant crying, this article gives a survey of various counseling and treatment methods and their efficacy. In addition to the pediatric somatic aspects of treatment, it describes alternatives available to pediatricians in the areas of interaction guidance, integrated methods of intervention, and counseling related to developmental problems.     

Recomendaciones sobre toma de decisiones y cuidados al final de la vida en neonatología

Healthcare-professionals who work in neonatal units believe that a very important part of their work is the care of sick newborns, and their families if the neonate has an incurable disease or will die.The effort is focused on preventing disproportionate and unnecessary treatments that result in pain and discomfort, and also separate the child from his family. These situations usually occur when the infant has a terminal illness, extreme immaturity with complications, or severe birth defects.In this paper, the Ethics Working Group of the Spanish Society of Neonatology reflects on decision making at this time of life. The ethical aspects are reviewed, including, limiting treatment, the basis of decision-making process (that should include adequate information), the relationship of trust, and deliberation between parents and professionals to make the right decision.It highlights the importance of caring for the family in a complex situation and of great suffering, when faced with the recommendation of professionals to limit treatment because their child suffers from a disease with a poor prognosis.The care of the sick neonate care at the end of life, and their families requires a considerable effort, dedication and training of all health personnel. The repeated experience of being close to suffering and death can adversely affect the professionals involved.Finally, there is mention of the legal aspects of limiting treatment, how to perform and document decision process, the withdrawal of life support, assessment of symptoms and pain control and sedation.     

Atención a menores con progenitores en conflicto en materia de información y consentimiento relativos a la salud de los hijos. Protocolo asistencial en el contexto de la legislación vigente

Among the main social and legislative changes as regards family matters that have taken place in Spain in the last few years, are included: (i) the gradual increase in legal disputes between parents, and (ii) the introduction of Law 26/2015 on Child Protection, which modified Law 41/2002 on the Freedom of the Patient. These searched for a balance between the rights of minors and the powers of the parents, particularly when the former had not reached 16 years or had sufficient maturity or, having reached it, the decision puts their life or health at severe risk. Likewise, it has led to a jurisprudence that determines that, for any minor, there are particularly sensitive, “special” or “important” health care actions, such as psychotherapy or surgical treatments, which require, with exceptions, the consent of both parents for it to be carried out. All this, however, subject to the discretion of the doctor responsible, who must always look after the best interests of the minor. For this reason, healthcare for minors, occasionally, lead to complex conflicts as regards information and consent by the parents, particularly when they do not agree. A review is presented on the current legislative framework and the main legal concepts that regulate the healthcare of minors as regards information and consent relative to health, as well a healthcare protocol for the care of minors in situations of conflict between parents, developed in the Gregorio Marañón Hospital of Madrid, and endorsed by the Official Medical Collegiate of Madrid.     

Rola lekarza w udzielaniu pomocy dziecku krzywdzonemu – aspekty prawne

This paper presents the basic issues concerning the problem of child abuse and the crucial legislative acts defining the duties of a doctor if it is determined or suspected child abuse. In addition to protecting the health and life of the child, a physician conduct must include the need to respect the applicable rules and steps leading to the interruption of violence. The primary responsibility of the physician is the need for notification of law enforcement in cases of suspected child abuse. This procedure must be followed by securing the evidence of the crime. Both these aspects are strongly linked with the rules on medical confidentiality, especially those that allow it to break under certain circumstances. Later in the article the authors also explains, very publicized by the media, the ability to receive child from their parents by a social worker. It also describes the role of a doctor in this process. Interdisciplinary teams composed of representatives of various institutions dealing with victims of violence, are an important element in the whole scheme, having a strong legal basis now. For people working in this team, it is a source of substantive and psychological support. It also allows a better understanding of mutual competence. At the end of the work the authors shall discuss the possibility of legal protection against possible adverse medical consequences from the perpetrator of violence.     

Consent for emergency medical services for children and adolescents

Parental consent generally is required for the medical evaluation and treatment of minor children. However, children and adolescents might require evaluation of and treatment for emergency medical conditions in situations in which a parent or legal guardian is not available to provide consent or conditions under which an adolescent patient might possess the legal authority to provide consent. In general, a medical screening examination and any medical care necessary and likely to prevent imminent and significant harm to the pediatric patient with an emergency medical condition should not be withheld or delayed because of problems obtaining consent. The purpose of this policy statement is to provide guidance in those situations in which parental consent is not readily available, in which parental consent is not necessary, or in which parental refusal of consent places a child at risk of significant harm.     

The concept of autonomy in adolescent psychiatry healthcare: A philosophical,legal and medical perspective

French law does not make it obligatory to obtain the consent of minors for suggested treatments. This situation can put the practitioner in difficulty, especially when trying to work on the issue of autonomy with an adolescent. It is not just the adolescent's autonomy that is only partially recognised during their treatment - that of their parents may also be overlooked by the physician in the child's best interest. In this situation, what can the physician do when working on areas related to autonomy, which are of the utmost importance during adolescence, and which become even more important during any treatment for potential psychiatric disorders? This opinion paper provides a focus on the concepts of autonomy, discernment, and the child's best interest, using a triple philosophical, legal, and medical approach, in order to provide guidance to practitioners confronted in their clinical practice with this central, complex and paradoxical issue. The modern-day philosophical approach ties the concept of autonomy to that of vulnerability. The interplay between the free exercise of the subject's rights and their protection is at issue in French law, which proposes to gradually provide new rights, and thus progressive autonomy, to minors, according to an evaluation of their level of discernment. It is similar to clinical practice and biomedical research which tend to objectively evaluate the level of discernment of children and adolescents. This evaluation is partially influenced by the physician's own values, which they need to be conscious of, in order to better accompany patients.     

Praktyczne aspekty postępowania lekarza w razie braku zgody opiekunów prawnych na udzielenie świadczenia zdrowotnego

A legal guardian's consent is needed to give a medical benefit to a juvenile patient. In some measure this consent substitutes the juvenile's consent. Such rule has the usage towards juveniles till they reach 16. After reaching this age both legal guardian and juvenile consent is required. In this subject in the progress of diagnostic-therapeutic treatment many problems may be found, for instance those concerning a definition of the way of the doctor's behavior when parents do not give consent for suggested medical treatment. In some situations the juvenile is allowed to make an objection by himself. There are also many cases when the matter has to be solved by the guardianship court. But when a delay could cause life threat or severe health disorder – is the doctor allowed to perform a treatment without the court's consent? This article is an attempt to solve such legal intricacies concerning treatment of the juvenile.     

Baby doe redux? The Department of Health and Human Services and the Born-Alive Infants Protection Act of 2002: a cautionary note on normative neonatal practice

The Born-Alive Infants Protection Act (BAIPA), passed by Congress in 2002, has attracted little publicity. Its purposes were, in part, "to repudiate the flawed notion that a child's entitlement to the protections of the law is dependent on whether that child's mother or others want him or her." Understood as antiabortion rhetoric, the bill raised little concern among physicians at the time of legislative hearings and passed in both Houses by overwhelming majorities, hardly suggesting contentious legislation. After its signing into law, the Neonatal Resuscitation Program (NRP) Steering Committee issued an opinion stating that "[BAIPA] should not in any way affect the approach that physicians currently follow with respect to the extremely premature infant." This interpretation of the law, however, may have been short sighted. In April 2005, the US Department of Health and Human Services (DHHS) brought life to the BAIPA, announcing: "As a matter of law and policy, [DHHS] will investigate all circumstances where individuals and entities are reported to be withholding medical care from an infant born alive in potential violation of federal statutes." The agency issued instructions to state officials on how the definitional provision within the BAIPA interacts with the Emergency Medical Treatment and Labor Act (EMTALA) and the Child Abuse Prevention and Treatment Act (CAPTA). These interagency memoranda potentially resurrect dormant governmental oversight of newborn-treatment decisions and thus may have influence over normative neonatal practice. Under the BAIPA, the DHHS interprets EMTALA to protect all "born-alive" infants; hospitals and physicians violating regulatory requirements face agency-sanctioned monetary penalties or a "private right of action by any individual harmed as a direct result." According to its memorandum, the DHHS will investigate allegations of EMTALA violations whenever it finds evidence that a newborn was not provided with at least a medical screening examination under circumstances in which a "prudent layperson observer" could conclude from the infant's "appearance or behavior" that it was "suffering from an emergency medical condition." The memorandum fails to clarify which observers qualify as prudent, what infant appearance or behavior is relevant, or what defines an emergency medical condition. Because these evaluative criteria are not constrained by reference to relevant standards of medical care, the agency arguably substitutes a nonprofessional's presumed sagacious assessment of survivability for reasonable medical judgment. Indeed, under a straightforward reading of the instruction, a family member could conceivably trigger an investigation after observing a relative deliver a 20-week fetus who maintains a heartbeat for an hour before its death. Most physicians would not consider this an emergency medical condition and, rather than perform a screening examination, would provide comfort for the newborn and support for the family. The guideline, however, does not state that professional acumen trumps the layperson's observations in these instances; thus, physicians are left unclear about whether screening examinations are required for all newborns regardless of a priori, reasoned considerations of survivability. In this context, the NRP Steering Committee opinion states that "at the time of delivery... the medical condition and prognosis of the newly born infant should be assessed. At that point decisions about withholding or discontinuing medical treatment that is considered futile may be considered by... providers in conjunction with the parents acting in the best interest of their child." However, most pediatricians skilled in screening and resuscitation are not currently called on to perform this function when the gestational age of a nonviable fetus is reasonably certain before delivery. If under the law screening is now required at any gestational age, professional procedure immediately after previable births may need modification. More worrisome, threatened aggressive investigations of alleged EMTALA violations at the soft edges of viability, where futility remains a matter of debate, jeopardize the normative ethical practice of offering discretionary palliative care. The DHHS sent its other instruction to state child protective services agencies responsible for implementing CAPTA regulations; it reiterates the limited situations in which physicians may withhold medical treatment from infants and reemphasizes the local role of "individuals within health care facilities" to notify authorities of suspected infractions. Its real import, however, is insistence on local execution of legal remedies to prevent nontreatment decisions deemed impermissible by the 1984 Baby Doe rules. Because this new directive encourages governmental oversight of treatment decisions involving imperiled newborns, a period of benign regulatory neglect seems to be over. The federal CAPTA rules arguably remove quality-of-life considerations from the decision-making calculus and therefore may conflict with the best-interests paradigm advocated by the American Academy of Pediatrics and NRP. How courts will respond to the DHHS interpretation of EMTALA and CAPTA under the BAIPA remains unclear. Federal courts have yet to authoritatively examine alleged EMTALA violations involving newborn treatment decisions at the limits of viability. The Wisconsin Supreme Court has permitted an EMTALA claim to go to trial where physicians allegedly did not screen or resuscitate a 22-week newborn delivered in an emergency department, and a lower appellate court has relied on CAPTA to hold that parents do not possess the right to choose against resuscitating an extremely premature newborn. The Texas Supreme Court recently granted physicians the paternalistic prerogative to resuscitate imperiled newborns without attention to parental preference under a common law doctrine of "emergent circumstances." These judicial decisions undermine the ethical discretion parents are typically afforded in decision-making before and after delivery in these morally complex situations. The DHHS interpretation of the BAIPA may encourage jurisdictional creep of these kinds of pronouncements as the agency seeks to expand legal protections for born-alive infants. The US Supreme Court has stated that "courts must presume that a legislature says in a statute what it means and means in a statute what it says there"; thus, judges interpret law by analyzing "concrete statutory language, not by reference to abstract notions of generalized legislative intent." The BAIPA indiscriminately defines "born alive" to include an infant "at any stage of development... regardless of whether the expulsion or extraction occurs as a result of natural or induced labor, cesarean section, or induced abortion," and it makes no reference to standards of care or best interests, nor does it specifically protect a parent's decision-making authority. Under the law's strict logic, an 18-week miscarried fetus with a detectable heart beat after delivery is entitled to the full protections of the law as determined by "any Act of Congress, or any ruling, regulation, or interpretation of the various administrative bureaus and agencies." Before concluding that the BAIPA would not affect normative neonatal practice, the NRP Steering Committee should have analyzed the act's actual statutory language and avoided relying heavily on imprecise legislative intent. The BAIPA's congressional sponsors did claim that the law "will not mandate medical treatment where none is currently indicated," but such political rhetoric is often not sufficient to render law innocuous years after separation from its legislative history. Besides, nowhere in the House record does the majority explicitly acknowledge that discretion to decide the fate of imperiled newborns invests in parents, in consultation with physicians; indeed, the bill's stated purpose was to repudiate that notion. At best, legislators recognized that physicians disagree about the efficacy of resuscitating at the limits of viability, and therefore the current standard of care permits doctors to deem resuscitation a futile endeavor. However, judges may resist characterizing resuscitation as futile, given its poor analytical fit, and substantial public-policy concerns regarding discrimination against future disabled individuals could easily tip a court to preserve incipient, at least, physiologic life under the BAIPA's all-encompassing definition of born alive.     

When is it permissible to dismiss a family who refuses vaccines? Legal,ethical and public health perspectives

Although immunization is one of the most important health interventions of the 20th century, cases of infectious disease continue to occur. There are parents who refuse immunization for their children, creating a dilemma for the primary care physician who must consider the best interest of the individual child as well as that of the community. Some physicians, when faced with parents who refuse immunization on behalf of their children, choose to dismiss these families from their practice. Given the existing shortage of primary care physicians across Canada, this decision to dismiss families based on vaccine refusal has far-reaching implications. The present article explores this issue in the Canadian context from a legal, ethical and public health perspective.     

Ethics, law and paediatric medicine

Medicine is practised within an ethical and a legal framework. Doctors must obtain the broad consent of their patients before treatment begins, and tell them of their choices and the material risks inherent in treatment. Where children are the patients, it is their parents or guardians who must give their consent, unless the situation is an emergency or the children have been removed from parental custody and care. Today, mature teenagers may consent to their own medical treatment. Doctors must protect their patients' confidential information, however acquired. There are very limited exceptions where confidential information may be revealed, and a few where revelation is mandatory. Effective communication between doctors and their patients, or their parents, is of signal importance.     

Ethical issues for parents of extremely premature infants

Abstract:   Evidence suggests that NICU (neonatal intensive care unit) parents with an baby born at the threshold of viability do not always receive sufficient counselling during an emergency admission and as a consequence, are not well-informed to accept withdrawal of treatment or quality of life decisions. As prospective parents are not educated earlier in pregnancy about extreme premature delivery, crucial information and counselling explaining neonatal issues is only offered to labouring women during their emergency admission. As a result, most have difficulty understanding the risks and benefits of baby's treatment and therefore rely heavily on the perinatal physician to take responsibility for the initial treatment. However, this lack of understanding often leaves parents disadvantaged, as many are left unprepared to participate objectively in quality of life decisions. According to recent research, morbidity figures remain relatively high with one in five survivors at risk of a long-term disability. This shows that some parents will still be confronted by ethical decision of whether or not to continue treatment, and this may not be apparent until days after treatment has been established. As recent research has shown, parents do, in fact, want increased involvement in the decision-making process regarding their child's treatment. Therefore, it has been argued, that parents should be provided with information earlier in pregnancy to familiarise themselves with quality of life issues which they may encounter as the NICU parents of an extremely premature infant.     

Attention deficit-hyperactivity disorder and its deceivers

There is a myriad of disorders that can mimic ADHD. Often parents or teachers, through their own investigation, will determine the diagnosis for their child's school problems as ADHD, when in fact, the difficulties are unrelated to ADHD. A carefully taken history, observation, and interaction with the child are needed. An evaluation of the school situation will help to indicate if the child's primary problem is behavioral, academic, medical, psychiatric, social, or attentional. Psychologic and educational testing is necessary to completely delineate the child's problems and needs. The greatest service that a physician can give children with academic problems is to approach each child in a systematic, scientific, and professional manner to determine the best treatment for the child and to demonstrate the most favorable outcome.