This essay consists of a critical examination of the 'Baby Doe' rules with respect to their proscription of references to quality of life considerations as a basis for treatment decisions. It is argued that the rules cannot and should not obviate references to the infant's quality of life. Further, it is argued that there are not sufficient differences between infants and adult incompetent patients to justify the use of quality of life assessments with regard to the latter and not the former.
{"title":"Do the 'Baby Doe' rules discriminate against infants?","authors":"G E Jones","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>This essay consists of a critical examination of the 'Baby Doe' rules with respect to their proscription of references to quality of life considerations as a basis for treatment decisions. It is argued that the rules cannot and should not obviate references to the infant's quality of life. Further, it is argued that there are not sufficient differences between infants and adult incompetent patients to justify the use of quality of life assessments with regard to the latter and not the former.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 2","pages":"87-91"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13505080","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Management of the child with spastic cerebral palsy is multidisciplinary and family-oriented, with emphasis on maintaining and increasing function and preventing deformities. Assessment, family education, and use of multiple forms of therapy in conjunction with assistive technology will result in optimum outcome. The pediatrician must know about and refer children to specialists who are knowledgeable about management of cerebral palsy. Education, vocational training and preparation for independent or assisted living situations are integral parts of management, and the pediatrician must be aware of community resources.
{"title":"Issues in the management of children with spastic cerebral palsy.","authors":"J G Kohn","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Management of the child with spastic cerebral palsy is multidisciplinary and family-oriented, with emphasis on maintaining and increasing function and preventing deformities. Assessment, family education, and use of multiple forms of therapy in conjunction with assistive technology will result in optimum outcome. The pediatrician must know about and refer children to specialists who are knowledgeable about management of cerebral palsy. Education, vocational training and preparation for independent or assisted living situations are integral parts of management, and the pediatrician must be aware of community resources.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 4","pages":"230-6"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13411098","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
M Milner, S Naumann, W Literowich, M Martin, S Ryan, W F Sauter, G F Shein, G Verburg
Applications of science and technology in the (re)habilitation of children and young adults can have dramatic, positive influences on their lives. Prosthetics, orthotics, mobility, postural support and seating, communication and education are responsibilities of the rehabilitation engineer. A holistic approach in meeting individual needs for technology is essential. The concerted rehabilitation engineering programme at The Hugh MacMillan Rehabilitation Centre supports service programmes with relevant research and development work.
{"title":"Rehabilitation engineering in pediatrics.","authors":"M Milner, S Naumann, W Literowich, M Martin, S Ryan, W F Sauter, G F Shein, G Verburg","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Applications of science and technology in the (re)habilitation of children and young adults can have dramatic, positive influences on their lives. Prosthetics, orthotics, mobility, postural support and seating, communication and education are responsibilities of the rehabilitation engineer. A holistic approach in meeting individual needs for technology is essential. The concerted rehabilitation engineering programme at The Hugh MacMillan Rehabilitation Centre supports service programmes with relevant research and development work.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 4","pages":"287-96"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13411649","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Symptoms of sleep disturbances are commonly associated with child and adolescent psychopathology. There has been considerable interest (both clinical and research) in sleep in relation to major depressive disorder, attention deficit disorder, and Tourette's syndrome. Despite evidence of subjective sleep disturbances, objective physiological studies (for the most part) have not produced clear, specific evidence of sleep disruption which is of clinical benefit at this time. The reasons for this may be due to the technical limitations of measuring sleep which may be unable to reliably detect subtle differences or may be due to maturational factors which protect the sleep of children and mask these findings. The interaction between the regulation of sleep and clinical disorders of affect, arousal, and behavior in children and adolescents appears to be a promising field for future research.
{"title":"Sleep disturbances in child and adolescent psychiatric disorders.","authors":"R E Dahl, J Puig-Antich","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Symptoms of sleep disturbances are commonly associated with child and adolescent psychopathology. There has been considerable interest (both clinical and research) in sleep in relation to major depressive disorder, attention deficit disorder, and Tourette's syndrome. Despite evidence of subjective sleep disturbances, objective physiological studies (for the most part) have not produced clear, specific evidence of sleep disruption which is of clinical benefit at this time. The reasons for this may be due to the technical limitations of measuring sleep which may be unable to reliably detect subtle differences or may be due to maturational factors which protect the sleep of children and mask these findings. The interaction between the regulation of sleep and clinical disorders of affect, arousal, and behavior in children and adolescents appears to be a promising field for future research.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 1","pages":"32-7"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13334107","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Advances in the neonatal intensive care (NIC) of the very low birth weight infant (VLBW) have given rise to important ethical questions. (1) Does every VLBW infant have the right to NIC? (2) Who should decide whether to treat? (3) How should resources be allocated for NIC? To play their part in answering these questions, paediatricians must become familiar with the principles of ethical reasoning. A distinction can be drawn between a human being and a human person on the basis of the possession of certain qualities, in the absence of which non-treatment may be justified. It will usually not be possible to make this distinction prospectively and hence it is not of much practical assistance as a criterion for decision making. Future disability of th infant can also be advanced as a reason for non-treatment, but it is not possible to know whether avoidance of disability makes it in the best interest of the infant to not be treated, and hence probable future disability is not per se an acceptable criterion for non-treatment. Pain and distress, however, is within the comprehension of decision makers and its avoidance may be an acceptable criterion for non-treatment (although in practice rarely a helpful one). The most useful criterion is one based on the ethics of resource allocation. Resources should be allocated in accordance with the ethical principles of justice and full beneficence. Criteria based on prognosis should be established to decide which VLBW infants should share in the finite resources directed to NIC.
{"title":"Ethical aspects in the care of very low birth weight infants.","authors":"B W Neal","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Advances in the neonatal intensive care (NIC) of the very low birth weight infant (VLBW) have given rise to important ethical questions. (1) Does every VLBW infant have the right to NIC? (2) Who should decide whether to treat? (3) How should resources be allocated for NIC? To play their part in answering these questions, paediatricians must become familiar with the principles of ethical reasoning. A distinction can be drawn between a human being and a human person on the basis of the possession of certain qualities, in the absence of which non-treatment may be justified. It will usually not be possible to make this distinction prospectively and hence it is not of much practical assistance as a criterion for decision making. Future disability of th infant can also be advanced as a reason for non-treatment, but it is not possible to know whether avoidance of disability makes it in the best interest of the infant to not be treated, and hence probable future disability is not per se an acceptable criterion for non-treatment. Pain and distress, however, is within the comprehension of decision makers and its avoidance may be an acceptable criterion for non-treatment (although in practice rarely a helpful one). The most useful criterion is one based on the ethics of resource allocation. Resources should be allocated in accordance with the ethical principles of justice and full beneficence. Criteria based on prognosis should be established to decide which VLBW infants should share in the finite resources directed to NIC.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 2","pages":"92-9"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13505081","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The United States and several nations in the developed world have initiated efforts to map and sequence the human genome. The knowledge derived from these efforts will have a profound influence on the practice of medicine. This article reviews the technical developments in the field of human genetics and reviews the ethical issues relevant to the pediatrician in the application of this technology in prenatal screening, presymptomatic screening, carrier screening, and gene therapy. The complexity of these issues warrants caution in the clinical application of these tools and will require a better understanding of human genetics by health professionals and the public.
{"title":"Ethical issues in human genetic technology.","authors":"J R Botkin","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The United States and several nations in the developed world have initiated efforts to map and sequence the human genome. The knowledge derived from these efforts will have a profound influence on the practice of medicine. This article reviews the technical developments in the field of human genetics and reviews the ethical issues relevant to the pediatrician in the application of this technology in prenatal screening, presymptomatic screening, carrier screening, and gene therapy. The complexity of these issues warrants caution in the clinical application of these tools and will require a better understanding of human genetics by health professionals and the public.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 2","pages":"100-7"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13344753","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The most common ocular and orbital tumors presenting in infancy, childhood and adolescence are presented and discussed in this review. It has been prepared specifically for the clinical pediatrician and focuses on the clinical recognition of ophthalmic neoplasms, their diagnostic evaluation employing the use of advanced imaging techniques, biopsy when indicated and extent of disease workup. In addition, current treatment modalities are discussed. Ocular tumors addressed include: retinoblastoma, capillary hemangioma, lymphangioma, dermoid and epidermoid cysts, teratoma, glioma, astrocytic hamartoma, neurofibroma, rhabdomyosarcoma and fibrous tumors. Two aggressive and potentially fatal tumors, rhabdomyosarcoma and retinoblastoma, are presented in detail. In addition, the ocular tumors associated with the phakomatoses (von Hippel-Lindau, tuberous sclerosis and neurofibromatosis) are reviewed.
{"title":"Ophthalmic neoplasms in infancy and childhood.","authors":"K W Sykora, R A Weiss, R M Ellsworth, B McCormick","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The most common ocular and orbital tumors presenting in infancy, childhood and adolescence are presented and discussed in this review. It has been prepared specifically for the clinical pediatrician and focuses on the clinical recognition of ophthalmic neoplasms, their diagnostic evaluation employing the use of advanced imaging techniques, biopsy when indicated and extent of disease workup. In addition, current treatment modalities are discussed. Ocular tumors addressed include: retinoblastoma, capillary hemangioma, lymphangioma, dermoid and epidermoid cysts, teratoma, glioma, astrocytic hamartoma, neurofibroma, rhabdomyosarcoma and fibrous tumors. Two aggressive and potentially fatal tumors, rhabdomyosarcoma and retinoblastoma, are presented in detail. In addition, the ocular tumors associated with the phakomatoses (von Hippel-Lindau, tuberous sclerosis and neurofibromatosis) are reviewed.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 3","pages":"163-72"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13346248","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pediatric rehabilitation is a rapidly growing field. Managing the pediatric patient requires experience and the appreciation of the contributions of health, social and educational professionals: physician, nurse, occupational therapist, learning specialist, recreational therapist, psychologist, social worker, and physical therapist. The responsibility of this multidisciplinary team is to assist the family and the child in attaining the highest realistic physical independence, to prevent musculoskeletal deformity and, therefore, to improve the overall quality of life. Successful rehabilitation will depend on the degree to which each professional considers the whole child when working to alleviate specific handicaps. The long-term rehabilitation of the pediatric patient is a joint team-family responsibility, and for treatment to be translated into daily life, full cooperation and commitment from the family is crucial. The physician is the coordinator of the rehabilitation team and is responsible for the initial assessment and diagnosis from which the team undertakes appropriate management. Ideally, the physician and team members communicate frequently to ensure congruent goals of treatment. The role of the physical therapist in the management of the pediatric rehabilitation patient relates to classifications of diagnosis. The authors present this guide to families and health professionals for using physical therapy resources.
{"title":"Pediatric physical therapy in a rehabilitation setting.","authors":"H Eigsti, M Aretz, L Shannon","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Pediatric rehabilitation is a rapidly growing field. Managing the pediatric patient requires experience and the appreciation of the contributions of health, social and educational professionals: physician, nurse, occupational therapist, learning specialist, recreational therapist, psychologist, social worker, and physical therapist. The responsibility of this multidisciplinary team is to assist the family and the child in attaining the highest realistic physical independence, to prevent musculoskeletal deformity and, therefore, to improve the overall quality of life. Successful rehabilitation will depend on the degree to which each professional considers the whole child when working to alleviate specific handicaps. The long-term rehabilitation of the pediatric patient is a joint team-family responsibility, and for treatment to be translated into daily life, full cooperation and commitment from the family is crucial. The physician is the coordinator of the rehabilitation team and is responsible for the initial assessment and diagnosis from which the team undertakes appropriate management. Ideally, the physician and team members communicate frequently to ensure congruent goals of treatment. The role of the physical therapist in the management of the pediatric rehabilitation patient relates to classifications of diagnosis. The authors present this guide to families and health professionals for using physical therapy resources.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 4","pages":"267-77"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13411103","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Retinopathy of prematurity has reappeared in the neonatal nursery after largely disappearing 35 years ago. The major factor in its reemergence is the progressive improvement in neonatal care, resulting in salvage of infants who formerly would have been lost. Oxygen is now recognized to be but one of many interacting factors in the development of retinopathy of prematurity, with extreme immaturity being the primary factor. Methods of examination, classification and treatment of retinopathy of prematurity are discussed.
{"title":"Retinopathy of prematurity.","authors":"M W Gaynon","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Retinopathy of prematurity has reappeared in the neonatal nursery after largely disappearing 35 years ago. The major factor in its reemergence is the progressive improvement in neonatal care, resulting in salvage of infants who formerly would have been lost. Oxygen is now recognized to be but one of many interacting factors in the development of retinopathy of prematurity, with extreme immaturity being the primary factor. Methods of examination, classification and treatment of retinopathy of prematurity are discussed.</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 3","pages":"127-33"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13346244","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ethical issues in pediatric rehabilitation should be viewed within the framework of the understanding of the terms of autonomy, nonmaleficence, beneficence and justice. In dealing with the pediatric patient, health professionals are most frequently treating the parents who have the decision-making authority. Normalization which underlies the concept of mainstreaming has become an important issue in pediatric rehabilitation. Normalization is based on the provision of opportunities for choosing, for independent decision making, and for autonomy. The right of the disabled child to have sexual information and to be acknowledged as a sexual individual is essential to the child's autonomy. More children are surviving catastrophic injuries and living with severe disabilities. Birth defects such as myelodysplasias point to the issues of treatment selection involving ethical, moral, philosophical, religious, financial and social values. The phrase 'quality of life' is often applied in these situations and is frequently understood as the 'best interests of the child' which should result in child-centered decisions. In this way, a decision to begin or to withhold treatment can be made in a more ethically considered manner. Resource allocation is of special concern in disabled children since they may consume significant resources in medical and rehabilitation costs spent throughout a lifetime. However, these costs may be justifiable when a disabled child matures into a productive adult. If maximum benefit of limited resources is to be achieved, these children should receive their care from rehabilitation professionals in established centers of rehabilitation expertise. However, we may soon need to accept the responsibility for rationing rehabilitative care as the number of disabled children grows beyond the dollars available to be spent.(ABSTRACT TRUNCATED AT 250 WORDS)
{"title":"Ethical issues encountered in pediatric rehabilitation.","authors":"D J Matthews, R H Meier, W Bartholome","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Ethical issues in pediatric rehabilitation should be viewed within the framework of the understanding of the terms of autonomy, nonmaleficence, beneficence and justice. In dealing with the pediatric patient, health professionals are most frequently treating the parents who have the decision-making authority. Normalization which underlies the concept of mainstreaming has become an important issue in pediatric rehabilitation. Normalization is based on the provision of opportunities for choosing, for independent decision making, and for autonomy. The right of the disabled child to have sexual information and to be acknowledged as a sexual individual is essential to the child's autonomy. More children are surviving catastrophic injuries and living with severe disabilities. Birth defects such as myelodysplasias point to the issues of treatment selection involving ethical, moral, philosophical, religious, financial and social values. The phrase 'quality of life' is often applied in these situations and is frequently understood as the 'best interests of the child' which should result in child-centered decisions. In this way, a decision to begin or to withhold treatment can be made in a more ethically considered manner. Resource allocation is of special concern in disabled children since they may consume significant resources in medical and rehabilitation costs spent throughout a lifetime. However, these costs may be justifiable when a disabled child matures into a productive adult. If maximum benefit of limited resources is to be achieved, these children should receive their care from rehabilitation professionals in established centers of rehabilitation expertise. However, we may soon need to accept the responsibility for rationing rehabilitative care as the number of disabled children grows beyond the dollars available to be spent.(ABSTRACT TRUNCATED AT 250 WORDS)</p>","PeriodicalId":77588,"journal":{"name":"Pediatrician","volume":"17 2","pages":"108-14"},"PeriodicalIF":0.0,"publicationDate":"1990-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"13296213","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}