Recomendaciones sobre toma de decisiones y cuidados al final de la vida en neonatología / Recommendations on making decisions and end of life care in neonatology

Los profesionales sanitarios que trabajamos en las unidades de neonatología consideramos que una parte muy importante de nuestro trabajo es el cuidado del recién nacido enfermo y su familia, cuando el neonato presenta una enfermedad incurable o va a morir. El esfuerzo se centra en evitar tratamientos desproporcionados e inútiles, que producen dolor, disconfort y separan al niño de su familia. Estas situaciones suelen ocurrir cuando el neonato tiene una enfermedad incurable, inmadurez extrema con complicaciones o graves malformaciones congénitas. En este documento, el Grupo de Trabajo de Ética de la Sociedad Española de Neonatología realiza una reflexión sobre la toma de decisiones en esta edad de la vida. Se han revisado los aspectos éticos de la limitación de los tratamientos, las bases del proceso de toma de decisiones que deben incluir la información adecuada, la relación de confianza y la deliberación entre padres y profesionales para tomar una decisión correcta. Se destaca la importancia del cuidado de la familia con una situación compleja y de gran sufrimiento, cuando se enfrenta a la recomendación de los profesionales de limitar tratamientos al presentar su hijo una enfermedad de mal pronóstico. La atención al neonato enfermo al final de la vida, y a sus familiares, requiere un considerable esfuerzo, dedicación y formación de todo el personal sanitario. La experiencia cercana de forma reiterada al sufrimiento y a la muerte puede afectar negativamente a los profesionales implicados. Para finalizar, se realiza una reflexión de los aspectos jurídicos de la limitación del tratamiento, la retirada del soporte vital y cómo se deben de realizar y documentar el proceso de decisión, la retirada del soporte vital, la valoración de síntomas y el control del dolor y la sedación(AU)

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. 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. 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(AU)

[Recommendations on making decisions and end of life care in neonatology]. / 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.

PACS regionales y su gestión / Regional PACS AND THIR MANAGEMENT

La gestión del conocimiento que se lleva a cabo en un RIS-PACS regional puede derivar en un mero intercambio de infrmes radiológicos. Esto es sin duda necesario, pero lo ideal es el trabajo en, red en el intercambio de informes radiológicos. Esto es sin duda necesario, pero lo ideal es el trabajo en, red en el que se acuerdan por cada uno de los interantes de la organizacion regional, las necesidades de apoyo, la manera de realizar estudios y el tipo de studios que se informan (AU)

The knowledge management which is carried out in a regional RIS-PACS can derive into a mere exchange of radiology repors. This is doubtless necessary. But it would be ideal to work in network, in which each of the members of the regional organisation agree on the support needs, the way to condutct the studies and the type of studies which are recorded (AU)

[Survey on scientific research activity in Spanish neonatal divisions between 2000 and 2004]. / Encuesta sobre la actividad investigadora en los servicios de neonatología en España en el período 2000-2004.

Research is an essential activity in neonatology. Following the recommendation of the Spanish Neonatal Society (SEN), a questionnaire on the state of research activity was sent to all Spanish neonatal divisions belonging to all public and private institutions with structured neonatal activity. The following items were included: (i) clinical level of the units; (ii) academic degrees and professional qualifications of the staff members; (iii) characteristics of the scientific activity performed, and (iv) financial and technical aid supporting research. Of a total of 115 eligible hospitals, 86 hospitals (74.8 %), including most of the referral centers, participated in the survey. Notable among the positive results were the findings that a significant number of neonatologists have doctoral degrees (17.4 %), are active members of the SEN (74.9 %), and wish to participate in scientific research (100 %). In addition, the presence of epidemiologists (100 %), research support units (85 %) and ethical committees (93 %) in the hospitals is widespread. Negative aspects include the lack of a specific budget to initiate research (74 %), lack of protected time even with research grants (86 %), and lack of interrelation with other groups of basic or clinical researchers (43 %). Analysis of scientific production revealed that most of the abstracts presented are restricted to Spanish national meetings, and only a small number of consolidated groups publish regularly in peer-reviewed international journals with impact factor. Measures that could help to improve the current situation are the formation of multi-hospital groups, participation in comprehensive databases (SEN 1500), and joint meetings for basic and clinical scientists, among others. The results of this survey were presented at the Congress of Perinatal Medicine held in Las Palmas (November, 2005).

Encuesta sobre la actividad investigadora en los servicios de neonatología en España en el período 2000-2004 / Survey on scientific research activity in Spanish Neonatal Divisions between 2000 and 2004

La investigación es una actividad fundamental en la neonatología. A propuesta de la Sociedad Española de Neonatología (SEN) se ha realizado una encuesta para conocer el estado de la investigación en los centros públicos y privados con una actividad neonatal estructurada. Se han incluido los siguientes apartados: a) nivel asistencial del centro hospitalario; b) nivel profesional del personal adscrito; c) características de la producción científica realizada, y d) estructura de apoyo a la investigación. De un total de 115 hospitales posibles han participado 86 (74,8 %), y destaca la participación de los grandes hospitales de referencia. Entre los resultados positivos obtenidos llama la atención un porcentaje significativo de neonatólogos con el grado de doctor (17,4 %), una elevada afiliación a la SEN (74,7 %), un deseo unánime realizar investigación (100 %) y la existencia generalizada de epidemiólogos (100 %), unidades de apoyo (85 %) y comités de ética en los hospitales (100 %). Los aspectos negativos son la escasez de medios económicos para el inicio de una primera investigación (74 %), la ausencia de tiempo protegido aun con proyectos concedidos (86 %) y la falta de relación con otros grupos de investigadores básicos o clínicos (43 %). En relación con la producción científica, la mayor parte de las comunicaciones y artículos se restringen al ámbito nacional, y sólo pequeños grupos consolidados publican asiduamente en revistas de impacto internacionales. La formación de grupos multihospitalarios, la existencia de bases de datos (SEN 1500) y reuniones mixtas básicas y clínicas y otras medidas que se sugieren pueden ayudar a mejorar la situación de la investigación en el ámbito de la neonatología. Los resultados de esta encuesta fueron presentados en el Congreso de Medicina Perinatal celebrado en Las Palmas (noviembre de 2005)

Research is an essential activity in neonatology. Following the recommendation of the Spanish Neonatal Society (SEN), a questionnaire on the state of research activity was sent to all Spanish neonatal divisions belonging to all public and private institutions with structured neonatal activity. The following items were included: (i) clinical level of the units; (ii) academic degrees and professional qualifications of the staff members; (iii) characteristics of the scientific activity performed, and (iv) financial and technical aid supporting research. Of a total of 115 eligible hospitals, 86 hospitals (74.8 %), including most of the referral centers, participated in the survey. Notable among the positive results were the findings that a significant number of neonatologists have doctoral degrees (17.4 %), are active members of the SEN (74.9 %), and wish to participate in scientific research (100 %). In addition, the presence of epidemiologists (100 %), research support units (85 %) and ethical committees (93 %) in the hospitals is widespread. Negative aspects include the lack of a specific budget to initiate research (74 %), lack of protected time even with research grants (86 %), and lack of interrelation with other groups of basic or clinical researchers (43 %). Analysis of scientific production revealed that most of the abstracts presented are restricted to Spanish national meetings, and only a small number of consolidated groups publish regularly in peer-reviewed international journals with impact factor. Measures that could help to improve the current situation are the formation of multi-hospital groups, participation in comprehensive databases (SEN 1500), and joint meetings for basic and clinical scientists, among others. The results of this survey were presented at the Congress of Perinatal Medicine held in Las Palmas (November, 2005)

Digitalización de una Comunidad Autónoma / Digitalisation of an Autonomous Community

El proyecto de digitalización de una Comunidad Autónoma no es un proyecto sencillo. Si ya de por si es complejo abordar un proyecto de digitalización de un hospital, hay que tener en cuenta que hay más elementos a tener sincronizados. Si bien, y según nuestra experiencia, es conveniente empezar en un hospital piloto, para luego ir replicando la experiencia a los demás. Los modelos de digitalización cambian en función de aspectos tan variables como los recursos físicos y económicos de los que dispongamos, además de las posibilidades de financiación de los mismos. Pero no podemos introducirnos en proyecto de estas dimensiones sin conocer cuales son los elementos que intervienen en el mismo

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[Vein of Galen arteriovenous malformations and neonatal convulsions]. / Malformacion arteriovenosa de la vena de Galeno y convulsiones neonatales.

INTRODUCTION: Vein of Galen arteriovenous malformation (VGAM) appears during the embryonic period and gives rise to a complex network of arterial and venous vessels that generates a blood shift, from the brain parenchyma towards the malformation, with haemodynamic repercussions. Heart failure is the most frequent presenting symptom during the neonatal period, yet, convulsions or other neurological signs have occasionally been reported in this stage of life. CASE REPORT: A term infant with symptoms of heart failure and convulsions that began during the first 12 hours of life. CAT and magnetic resonance angiography scans revealed a vascular malformation and areas of cerebral ischaemia. CONCLUSIONS: In the case of our patient, detecting areas of ischaemia in the cerebral hemispheres suggested that the damage could be caused by a "steal" syndrome leading the blood flow away from these areas towards the malformation. This situation can occur either before or after birth and the self-limiting nature of the seizures in cerebral infarcts could lead to them going noticed because they take place inside the uterus or when the patient is not being observed directly by his or her health care providers. We suspect that the convulsions in newborn infants with this malformation may well be more frequent than is currently believed.

Malformación arteriovenosa de la vena de Galeno y convulsiones neonatales / Vein of galen arteriovenous malformations and neonatal covulsions

Introduction. Vein of Galen arteriovenous malformation (VGAM) appears during the embryonic period and gives rise to a complex network of arterial and venous vessels that generates a blood shift, from the brain parenchyma towards the malformation, with haemodynamic repercussions. Heart failure is the most frequent presenting symptom during the neonatal period, yet, convulsions or other neurological signs have occasionally been reported in this stage of life. Case report. A term infant with symptoms of heart failure and convulsions that began during the first 12 hours of life. CAT and magnetic resonance angiography scans revealed a vascular malformation and areas of cerebral ischaemia. Conclusions. In the case of our patient, detecting areas of ischaemia in the cerebral hemispheres suggested that the damage could be caused by a ‘steal’ syndrome leading the blood flow away from these areas towards the malformation. This situation can occur either before or after birth and the self-limiting nature of the seizures in cerebral infarcts could lead to them going noticed because they take place inside the uterus or when the patient is not being observed directly by his or her health care providers. We suspect that the convulsions in newborn infants with this malformation may well be more frequent than is currently believed (AU)

Introducción. La malformación arteriovenosa de la vena de Galeno (MAVG) aparece durante el período embrionario y da lugar a una compleja red de vasos arteriales y venosos que generan una derivación de sangre desde el parénquima cerebral hacia la malformación, con repercusiones hemodinámicas. La insuficiencia cardíaca es la forma de presentación más frecuente durante el período neonatal; sin embargo, las convulsiones u otros signos neurológicos se han referido raramente en esta etapa de la vida. Caso clínico. Se trata de un recién nacido a término que comenzó en las primeras 12 horas de vida con un cuadro de insuficiencia cardíaca y convulsiones. La TAC y la angiorresonancia magnética evidenciaron la malformación vascular y zonas de isquemia cerebral. Conclusiones. En nuestro paciente, la detección de áreas de isquemia en los hemisferios cerebrales sugiere que el daño podría estar ocasionado por un fenómeno de ‘robo’ del flujo sanguíneo desde dichas áreas hacia la malformación. Esta situación puede acontecer antes o después del nacimiento, y el carácter autolimitado de las crisis en los infartos cerebrales podría hacer que éstas pasaran desapercibidas porque acontezcan intraútero o cuando el paciente no está siendo observado directamente por sus cuidadores. Nosotros sospechamos que las convulsiones en los neonatos con esta malformación podrían ser más frecuentes de lo que se considera en la actualidad (AU)

Role of cytokines (interleukin-1beta, 6, 8, tumour necrosis factor-alpha, and soluble receptor of interleukin-2) and C-reactive protein in the diagnosis of neonatal sepsis.

AIM: To investigate whether the serum levels of interleukin-1beta, 6, 8, tumour necrosis factor-alpha and the soluble receptor of IL-2 are useful in the diagnosis of neonatal sepsis, and whether their diagnostic power is increased when in combination with classical markers such as C-reactive protein and white blood cell count. METHODS: Blood samples were collected at admission from 40 neonates with suspected infection. Patients were included in different groups according to the bacteriological and laboratory results: Group I consisted of 20 newborns with positive blood cultures and other biological tests suggestive of infection. Group II included 20 neonates with negative blood cultures and biological tests not suggestive of infection. The control group included 20 healthy neonates with no clinical or biological data of infection. RESULTS: Mean values of C-reactive protein were significantly higher in Group I. No differences were found between the groups for white blood cell count, with the exception of the presence of leucocytosis in Group II. Levels of interleukin-1beta, 6, 8, tumour necrosis factor-alpha, soluble receptor of interleukin-2, and C-reactive protein were significantly higher in infected neonates than in the control groups. Detection sensitivity and specificity were 80 and 92% for C-reactive protein, 60 and 87% for interleukin-1beta, 61 and 80% for interleukin-6, 62 and 96% for interleukin-8, 54 and 92% for tumour necrosis factor-alpha and 63 and 94% for soluble receptor of interleukin-2. The discriminant analysis showed that the best combination for sepsis diagnosis was C-reactive protein + interleukin-8 + soluble receptor of interleukin-2, with a sensitivity of 85% and a specificity of 97.1%. CONCLUSION: Our study suggests that no individual test can on its own identify infected neonates, and that although the combination of C-reactive protein, interleukin-8 and the soluble receptor of interleukin-2 exhibits a high specificity, its sensitivity is limited.

Cord blood levels of cytokines as predictors of early neonatal sepsis.

AIM: To investigate whether cord blood levels of C-reactive protein, interleukin-1beta, interleukin-6, interleukin-8, tumour necrosis factor-alpha and the soluble receptor of interleukin-2, are useful markers in the diagnosis of early neonatal sepsis. DESIGN: Umbilical cord blood samples were obtained at birth from 261 neonates, but 5 of these newborns were excluded from the study. Group I included 10 newborns that developed early neonatal sepsis with a positive blood culture; Group II included 11 newborns with non-infectious perinatal diseases; Group III, which served as the control group, included 10 randomly selected patients, matched for gestational age, among the 235 healthy newborn babies. RESULTS: There were no differences among the three study groups in levels of C-reactive protein. interleukin-1beta, tumour necrosis factor-alpha and the soluble receptor of interleukin-2. Interleukin-6 was significantly elevated in Group I (360.4+/-157.8 pg/ml) and Group II (158.8+/-122.3 pg/ml), when compared with Group III (8.6+/-3.12 pg/ml) (p < 0.01), whereas interleukin-8 was significantly elevated in Group I (389.3+/-115.9 pg/ml) compared with Groups II (30.2+/-5.1 pg/ml) (p < 0.05) and III (33.9+/-8.6 pg/ml) (p < 0.05). A cut-off of 100.8 pg/ml for interleukin-6 obtained by the ROC (receiver operating characteristic) method gave a sensitivity of 50% and a specificity of 87%, and a cut-off of 111.7 pg/ml for interleukin-8 showed a sensitivity of 78% and a specificity of 91%. CONCLUSION: While cord blood levels of interleukin-6 appear to be related to pathological conditions in the perinatal period (infectious and non-infectious), interleukin-8 seems to be a good predictor of early bacterial neonatal infection.

Early sepsis, obstructive jaundice and right-sided diaphragmatic hernia in the newborn.

A male newborn was admitted to our Unit because of early sepsis and shock. He required antimicrobial therapy and mechanical ventilation and initially did well, although he exhibited jaundice and cholestasis. During the second week he deteriorated, with radiological opacification of the right hemithorax and pleural effusion, and did poorly in spite of antibiotical therapy and drainage of the effusion. In the third week, the X-ray suggested some bowel loops in the right hemithorax. A right-sided diaphragmatic hernia was confirmed by a CT-scan, and surgery was performed with good outcome. The association of delayed-onset right-sided CDH following early sepsis and obstructive jaundice has not been published before, and illustrates a scarcely known form of presentation of this condition.

Hipotensión arterial en el recién nacido de muy bajo peso / Arterial hypotension in the very low weight newborn

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