Experiences of parents of children with hypoplastic left heart syndrome during their treatment: a qualitative study.

AIM: To investigate the opinion and personal experience of parents of children born with Hypoplastic Left Heart Syndrome and what advice they would give to other parents who have to decide between treatment options. METHODS: We conducted a qualitative, descriptive and retrospective study by means of a survey directed to parents of children born with Hypoplastic Left Heart Syndrome in a tertiary hospital in Buenos Aires (Argentina). Their answers and data regarding medical procedures were analysed. RESULTS: Parents of thirteen out of sixteen patients with Hypoplastic Left Heart Syndrome were surveyed. Norwood surgery had been performed in all the patients, many had received other procedures, and five had died. In relation to the decision-making process, sixty-one percent of parents would recommend other parents to remain at peace after having done everything possible and 54% would suggest to not feel guilt despite the final result. None of the parents would recommend rejecting surgical treatment and choosing comfort care. CONCLUSION: The majority of parents of children with Hypoplastic Left Heart Syndrome would recommend continuing with the therapeutic effort in order to feel at peace and reduce feelings of guilt.

Attitudes of Argentinean Neonatologists toward Resuscitation of Infants with Trisomies 21, 18, and 13: A Multicenter Survey.

OBJECTIVE: This study was aimed to explore the attitude of Argentinean neonatologists in the delivery room on resuscitating infants with trisomies. STUDY DESIGN: An anonymous questionnaire was completed by neonatologists staffing level-III neonatal intensive care units (NICUs) on resuscitation of children with trisomies 21, 18, and 13. Potential sociocultural factors influencing the decision to resuscitate were included. RESULTS: Overall, 314 neonatologists in 34 units in the Buenos Aires region participated (response rate of 54%). The position of neonatologists regarding the resuscitation in the delivery room was that 98% would resuscitate newborns with trisomy 21, and 47% with trisomy 18 or trisomy 13. Resuscitation of newborns with trisomy 18 or trisomy 13 by neonatologists was significantly associated with working in the public sector, religious beliefs, and legal framework. CONCLUSION: With improvement in the management and treatment of infants with trisomies 18 and 13, Argentinean neonatologists showed a favorable attitude toward resuscitating them in the delivery room. KEY POINTS: · We explored the attitudes of Argentinean neonatologists on resuscitation of children with trisomies.. · Half of neonatologists would resuscitate newborns with trisomies18 and 13.. · These results suggest an ongoing paradigm shift of the most severe trisomies..

An Ethical Pathway to Quality of Life in Critically Ill Newborns.

Advances in perinatology have permitted the survival of fragile neonates. Quality of life (QoL) has been considered a key element in medical decision-making. In this review we analyse the role of QoL regarding the decision of withholding or withdrawing of life-sustaining treatment (LST). The role of QoL is debated because of the conceptual difficulties it raises. The lack of consensus on its definition and the difficulties in measuring it objectively, mean that basing clinical decisions solely on QoL has some risks. To avoid a purely subjective assessment, the principle of totality, and the principle of therapeutic adequacy should be considered. In case of uncertain prognosis, some therapeutic persistence seems reasonable. If this does not benefit the clinical condition of the child, then it may be no longer appropriate to continue the LST in case of severe disabilities. QoL is essential in medical decision-making, but is insufficient as the only criterion.

Limitation of life-sustaining treatment in NICU: Physicians' beliefs and attitudes in the Buenos Aires region.

OBJECTIVE: To explore the ethical beliefs and attitudes of Argentinean neonatologists regarding limitation of life-sustaining treatment (LST) for very sick infants. METHODS: We used an anonymous questionnaire including direct questions and hypothetical clinical cases (inevitable demise and anticipated survival with severe long-term disability). Multivariable analysis was carried out to assess the relation between type of clinical case and physicians' LST attitudes. RESULTS: Overall, 315 neonatologists in 34 units in the Buenos Aires region participated (response rate 54%). Most responders would agree with decisions to start or continue LST. In both clinical cases, continuing current treatment with no therapeutic escalation was the only form of LST limitation acceptable to a substantial proportion (about 60%) of neonatologists. Agreement with LST limitation was slightly but significantly more likely when death was inevitable. CONCLUSION: Argentinean neonatologists showed a conservative attitude regarding LST limitation. Patient prognosis and options of non-treatment decision significantly influenced their choices.

Ethical issues about the paradigm shift in the treatment of children with trisomy 18.

Until recently, trisomy 18 was considered a disease incompatible with life, with a high percentage of electively terminated pregnancies. The usual behavior was denial of treatment. But some medical interventions have changed the survival of children. A search for articles published in the PubMed database on the latest medical decisions in newborns with trisomy 18 was done. Two main subjects were examined: (1) the chances of survival and (2) the perception of quality of life. Trisomy 18 is no longer considered a disease incompatible with life, and the discussion has shifted towards the type of treatment that is appropriate to initiate at birth. There are two medical attitudes towards these children: either palliative care or life-prolonging interventions. With medical intervention, the survival is as high as 23% at 5 years of age. Regarding the quality of life, all decision-makers emphasize the possibility of taking the child home. The physicians' perception is more pessimistic than that of the parents. Only a few children benefit from medical interventions.Conclusion: There is a rethinking of treatment behavior in children with trisomy 18. The possible quality of life achieved should be further investigated. It seems inappropriate to simply dismiss medical interventions.What is Known• Until recently, trisomy 18 was considered a disease incompatible with life. The most common behavior was abortion and denial of treatment.What is New• It is no longer considered a lethal disease. The type of medical intervention that is appropriate to perform is now being discussed. Selected children benefit from an interventionist approach.

Ethical Issues in Intrauterine Myelomeningocele Surgery.

Intrauterine surgery shows that the prognosis of neonates with myelomeningocele (MMC) has improved, both in survival and in quality of life. In order to study the current efficacy of intrauterine surgery for MMC and to make an ethical analysis of its proportionality, we conducted a PubMed search using the keywords "myelomeningocele", "intrauterine surgery", "MOMS", and "trial". Thirty-eight articles were found. The literature investigated the risks and benefits of intrauterine surgery based on the physiological parameters of MMC. Intrauterine surgery produces clear benefits. However, it also has disadvantages, such as premature birth, fetal or neonatal death, and uterine complications. The option of surgery is positive. However, since the intervention is risky, the final decision must be prudential, and thus should involve an ethical analysis of therapeutic proportionality. This requires a specific clinical evaluation of the fetus ensuring fetal survival in all cases and minimizing the risks arising from extremely premature birth.

Suspensión del soporte respiratorio en enfermos con esclerosis lateral amiotrófica / Suspension of respiratory support in patients with amyotrophic lateral sclerosis

Las decisiones médicas en pacientes con esclerosis lateral amiotrófica avanzada continúan suscitando un amplio debate. El objetivo de este trabajo es analizar las decisiones referidas al soporte respiratorio y, mediante el estudio de sus implicancias éticas, señalar un posible camino decisional para la suspensión del tratamiento. Se realizó una búsqueda bibliográfica sistemática usando Pubmed database (2010-2016) y se investigó si la ventilación no invasiva (VNI) y la ventilación mecánica (VM) producen o no un incremento en el tiempo de supervivencia y en la calidad de vida. Se incluyeron 38 artículos de revisión. A partir de los resultados obtenidos se analizaron las implicancias éticas de las decisiones de iniciar y, particularmente, de suspender las diversas posibilidades de soporte respiratorio. El tiempo de supervivencia se incrementa tanto con VNI como con VM. La calidad de vida, sobre todo según criterios fisiológicos, mejora con VNI pero es controversial con VM. La implementación de VM y su suspensión futura es un aspecto del tratamiento abierto a la discusión médica y ética. Desde una perspectiva respetuosa de la intrínseca dignidad de todo ser humano, cualquiera sea su calidad de vida y sabiendo que no hay terapias eficaces para la enfermedad de base, la decisión de retirar la VM en un paciente con enfermedad avanzada requiere: conocer la voluntad del enfermo y, sobre todo, evaluar si dicha medida de soporte respiratorio empieza a ser objetivamente desproporcionada

Decision making in advanced Amyotrophic Lateral Sclerosis (ALS) patients keeps on being a controversial issue. The aim of this work is to discuss ethical implications of withdrawing respiratory support treatment in patients with ALS. Through a bibliographic search on Pubmed database (2010-2016) we investigated whether or not the use of Non-Invasive Ventilation (NIV) and Mechanical Ventilation (MV) would increase survival and quality of life. We included 38 review articles. From these papers, results and ethical implications of initiating and mainly withdrawing respiratory support were analyzed. Survival time increased with NIV and with MV. Quality of life, above all according to physiological criteria, improved with NIV but regarding MV it remained controversial. Implementation and future withdrawal of MV seemed open to medical and ethical discussion. From a perspective of the intrinsic dignity of every human being, whatever its quality of life was, and knowing that no effective therapies for the underlying disease are available, the decision to remove MV in a patient with advanced ALS requires: knowledge of the will of the patient and, above all, evaluating whether this respiratory support measure is becoming objectively disproportionate

[Suspension of Respiratory Support in Patients with Amyotrophic Lateral Sclerosis]. / Suspensión del Soporte Respiratorio en Enfermos con Esclerosis Lateral Amiotrófica.

Decision making in advanced Amyotrophic Lateral Sclerosis (ALS) patients keeps on being a controversial issue. The aim of this work is to discuss ethical implications of withdrawing respiratory support treatment in patients with ALS. Through a bibliographic search on Pubmed database (2010-2016) we investigated whether or not the use of Non-Invasive Ventilation (NIV) and Mechanical Ventilation (MV) would increase survival and quality of life. We included 38 review articles. From these papers, results and ethical implications of initiating and mainly withdrawing respiratory support were analyzed. Survival time increased with NIV and with MV. Quality of life, above all according to physiological criteria, improved with NIV but regarding MV it remained controversial. Implementation and future withdrawal of MV seemed open to medical and ethical discussion. From a perspective of the intrinsic dignity of every human being, whatever its quality of life was, and knowing that no effective therapies for the underlying disease are available, the decision to remove MV in a patient with advanced ALS requires: knowledge of the will of the patient and, above all, evaluating whether this respiratory support measure is becoming objectively disproportionate.

Opinions of Argentinean neonatologists on the initiation of life-sustaining treatment in preterm infants.

BACKGROUND: In June 2014, the Argentinean Ministry of Health published guidelines for the management of neonates born at the limit of viability (≤25 weeks of gestation). We explored the opinion of neonatologists in Buenos Aires, Argentina, regarding the initiation of life-sustaining treatment (LST) in critically ill neonates, focusing on the effect of sociocultural factors on their opinion. METHODS: An anonymous survey was designed to explore the opinions of Argentinean neonatologists on whether or not to initiate LST in newborns born prematurely. Five hundred eighty neonatologists from 36 neonatal units were invited to participate, and 315 specialists from 34 neonatal units completed the survey (response rate 54%). The survey was conducted between June 2014 and February 2015. RESULTS: 9.5% (30/315) of the neonatologists answered they would begin LST on neonates born at 22 weeks, 42.5% (134/315) at 23 weeks, 37% (117/315) at 24 weeks, 7% (22/315) at 25 weeks, and 4% (12/315) at ≥26 weeks. Cumulatively then, 96% of participants stated they would start LST at 25 weeks of gestation or less. On multivariate analysis, a "transcendent" value of life and lack of consideration of the local legal framework for making medical decisions in the delivery room were statistically associated with an opinion in favor of initiation of LST in neonates born at the limit of viability. More than 50% of the Argentinean neonatologists surveyed answered they would initiate treatment at a gestational age of less than 23 weeks, despite the fact that the recommendations of the Argentinean Ministry of Health are to only give comfort care for these neonates. The opinion of most Argentinean neonatologists surveyed thus differs from that recommended by the guidelines of Argentina. CONCLUSION: The most frequent opinion of Argentinean neonatologists was to initiate LST in neonates at the limit of viability. Certain factors, in particular the sense of a transcendent meaning to life and lack of consideration of the local legal framework for making medical decisions in the delivery room, seem to influence the decision to start LST.

Ethical dilemmas associated with clinicians' decisions about treatment in critically ill infants born in Córdoba, Argentina.

The objective of this article is to examine end of life decisions made by neonatologists of Córdoba, Argentina. An anonymous questionnaire was designed to investigate neonatologists' decisions on when to initiate or withdraw treatment in critical neonates. All neonatologists who take care of critically ill neonates in Córdoba participated in the survey. More than 75% of them would initiate treatment in preterm infants with uncertain prognosis based on the viability of the newborn. Because it is common to find that critically ill neonates lack sufficient diagnostic information at birth, this attitude seems to manifest a certain therapeutic activism. However, more than 80% of physicians withdraw futile treatments that do not produce benefits. Cordoban neonatologists initiate medical treatment based on the current clinical conditions of neonates, applying a certain degree of therapeutic activism. Doctors withdraw neonatal treatment when it is considered futile.

Preservación del esfinter anal en el cáncer de recto distal / Preservation of the

RESUMEN: Se presenta una revisión bibliográfica somera y se realizan consideraciones sobre los distintos tipos de técnicas quirúrgicas con preservación del mecanismo esfinteriano en tumores rectales bajos. Se analizan las condiciones que deben reunir las lesiones para ser considerada de tipo de técnica. Se comentan las operaciones más frecuentes incluyendo las resecciones locales, transanales, tranesfinterianas, transacras y la resección anterior baja y se comenta la utilización de la quimio-radio adyuvante. Se concluye en la validez de estas técnicas para disminuir la morbilidad postoperatoria de la cirugía del cáncer de recto bajo.(AU)

Preservación del esfinter anal en el cáncer de recto distal / Preservation of the

RESUMEN: Se presenta una revisión bibliográfica somera y se realizan consideraciones sobre los distintos tipos de técnicas quirúrgicas con preservación del mecanismo esfinteriano en tumores rectales bajos. Se analizan las condiciones que deben reunir las lesiones para ser considerada de tipo de técnica. Se comentan las operaciones más frecuentes incluyendo las resecciones locales, transanales, tranesfinterianas, transacras y la resección anterior baja y se comenta la utilización de la quimio-radio adyuvante. Se concluye en la validez de estas técnicas para disminuir la morbilidad postoperatoria de la cirugía del cáncer de recto bajo.