Ethical and end of life considerations for neonates requiring ECMO support.

ECMO has proven to be a life-saving intervention for a variety of disease entities with a high rate of survival in the neonatal population. However, ECMO requires clinical teams to engage in many ethical considerations. Even with ongoing improvements in technology and expertise, some patients will not survive a course of ECMO. An unsuccessful course of ECMO can be difficult to accept and cause a great deal of angst. These questions can result in real conflict both within the care team, and between the care team and the family. Herein we explore a range of ethical considerations that may be encountered when caring for a patient on ECMO, with a particular focus on those courses where it appears likely that the patient will not survive. We then consider how a palliative care approach may provide a tool set to help engage the team and family in confronting the difficult decision to discontinue ECMO.

[Neonatal palliative care at home: Contribution of the regional pediatric palliative care team]. / Soins palliatifs néonatals à domicile : apport des équipes régionales de soins palliatifs pédiatriques.

The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks.

Tough Decisions for Premature Triplets.

When infants are born at the borderline of viability, doctors and parents have to make tough decisions about whether to institute intensive care or provide only palliative care. Often, these decisions are made in moments of profound emotional turmoil, and parents receive different information from different health professionals. Communication can become garbled. It may be difficult to tell when and whether the patient's clinical condition has changed enough so that certain choices that had once been permissible become impermissible. In this "Ethics Rounds," we present a case of triplets born at the borderline of viability. We sought comments from the triplets' parents, the doctors and ethicist who were caring for the infants, and a bioethicist/neonatologist from another hospital.

The hospital ethics committee and the nurse.

This article discusses all aspects of the hospital ethics committee. The nurse's use of the committee and participation on the committee are delineated. Neonatal examples are given.

End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided.

Interventions for extremely preterm infants bring up many ethical questions. Guidelines for intervention in the "periviable" period generally divide infants using predefined categories, such as "futile," "beneficial," and "gray zone" based on completed 7-day periods of gestation; however, such definitions often differ among countries. The ethical justification for using gestational age as the determination of the category boundaries is rarely discussed. Rational criteria used to make decisions regarding life-sustaining interventions must incorporate other important prognostic information. Precise guidelines based on imprecise data are not rational. Gestational age-based guidelines include an implicit judgment of what is deemed to be an unacceptably poor chance of "intact" survival but fail to explore the determination of acceptability. Furthermore, unclear definitions of severe disability, the difficulty, or impossibility, of accurately predicting outcome in the prenatal or immediate postnatal period make such simplistic formulae inappropriate. Similarly, if guidelines for intervention for the newborn are based on the "qualitative futility" of survival, it should be explicitly stated and justified according to established ethical guidelines. They should discuss whether newborn infants are morally different to older individuals or explain why thresholds recommended for intervention are different to recommendations for those in older persons. The aim should be to establish individualized goals of care with families while recognizing uncertainty, rather than acting on labels derived from gestational age categories alone.

Is treatment futile for an extremely premature infant with giant omphalocele?

Doctors have no ethical obligation to provide futile treatment. This has been true since the time of Hippocrates who warned physicians not to treat patients who were "overmastered by their disease." This principle remains valid today but, as the Society for Critical Care Medicine notes, it is difficult to identify treatment as absolutely futile in all but a few clinical situations. Far more common, they note, are "treatments that are extremely unlikely to be beneficial, are extremely costly, or are of uncertain benefit." These, they say, "may be considered inappropriate and hence inadvisable, but should not be labeled futile." So what should doctors do when they have a case that seems close to the futility threshold but does not, perhaps, quite cross it? In such cases, is it appropriate to make unilateral decisions to withhold life-sustaining treatment even if the family objects? Or should treatment be provided knowing that it might cause pain and suffering to an infant with no likelihood of benefit? To address these questions, we present a case of an extremely premature infant with a giant omphalocele and ask 3 neonatologists, Dr Dalia Feltman of Evanston Hospital, Dr Theophil Stokes of the Walter Reed Medical Center, and Dr Jennifer Kett, a neonatologist and fellow in bioethics at Seattle Children's Hospital, to comment.

Rights of the newborn and end-of-life decisions.

Advances in perinatal medicine have dramatically improved neonatal survival. End-of-life decision making for newborns with adverse prognosis is an ethical challenge and the ethical issues are controversial. The newborn is a person with specific rights which he cannot claim, due to his physical and mental immaturity. These rights impose to the society obligations and responsibilities, which health professionals and institutions of all countries must enforce. Every newborn has the right to life with dignity. Providing compassionate family-centered end-of-life care to infants and their families in the NICU should be a mandatory component of an optimally neonatal palliative care.

Palliative care for the newborn in the United Kingdom.

Palliative care for the newborn is a developing area. There are more than 2000 estimated neonatal deaths each year in the UK from causes likely to benefit from palliative care. There is an increasing recognition that while the goals of care may be different for dying newborns, they deserve the same high standard of care as those babies who go on to survive. Recent neonatal palliative care guidance is available from the British Association for Perinatal Medicine (BAPM), the General Medical Council (GMC), and ACT (the U.K. association for children's palliative care). We attempt to answer the question: 'What does the provision of good neonatal palliative care look like?' by examining the factors important in the provision of such care.

Advanced clinical medicine requires advanced clinical ethics.

Many advances have occurred in clinical medicine in the last decades. Solid organ transplants, corrective surgery for congenital malformations, improved cytostatic regimes for children with cancer, and respiratory care for premature infants are but a few examples of the changing face of medical practice. Such changes have added years to life. But along the way many patients have paid a price, both in terms of loss of life and of added suffering. Even today, some survivors are faced with a life of impairment and suffering. Follow-up studies of extremely low-birth-weight infants show that the smallest infants have a high rate of severe sequelae. Some argue that such suffering should be sufficient reason to make us desist from further attempts to advance the frontiers of therapy. This paper seeks to reflect on the character of advanced medicine and on how we relate to patients and their kin in our quest for further improvements in therapy. The price for continued advances will inevitably be paid by some patients who will not profit from them. Therefore, patients who are asked to participate in such a quest must receive honest and transparent information, including a discussion about where and how they would draw the limits. Clinical competency is a core concept in advanced medicine, but a caring comportment also demands that our relationship to the patient be characterized by honesty, integrity, and decency. In dialogue with parents, finding the right balance between parental exercise of autonomy and safe-guarding the best interest of the child remains a challenge.

Describen un protocolo de toma de decisiones en la unidad de cuidados intensivos neonatales / Application of a decision-making protocol in the neonatal intensive care unit

La práctica de la medicina implica una continua toma de decisiones, tanto diagnósticas como pronósticas, terapéuticas y éticas; la actuación diagnóstica es la opción nosológica más probable entre las posibles. La reflexión bioética contemporánea en la neonatología se ha interesado por los problemas del niño hospitalizado, las malformaciones congénitas y la eutanasia neonatal, entre otras, dedicándole poca atención a las actividades del médico y de los enfermeros en el ejercicio de su profesión. Este trabajo hace una valoración del cumplimiento del protocolo de actuación en la Unidad de Cuidados Intensivos Neonatales del Hospital Ginecoobstétrico de Guanabacoa. El estudio se hizo de forma descriptiva, prospectiva y longitudinal. El universo de estudio fue el total de neonatos críticos que ingresaron desde el mes de enero de 2005 hasta diciembre de 2008. La elaboración de los datos se obtuvo de los expedientes clínicos y del registro de ingreso en la unidad y se aplicaron encuestas a las madres y familiares de los niños ingresados. El resultado logrado es que los trabajadores cumplen con los requisitos establecidos en el protocolo de actuación, logrando una adecuada relación médico-paciente y un elevado nivel de satisfacción por los servicios recibidos, base de una buena práctica médica.

Ethical implications of newborn screening, life-limiting conditions, and palliative care.

While the first few days of an infant's life usually involve incorporation into a joyous family, this period can also be fraught with conditions that affect and potentially threaten survival. This article explores the ethical components of neonatal conditions such as disorders of sex development and metabolic disorders. Ethical issues surrounding futility, requests for unwarranted care, palliative care, and neonatal hospice are also discussed. Helping parents through the grief process and ensuring that they are provided opportunities to participate in important decisions for their neonate are key components of the nursing role. Implications for clinical practice are provided in the form of a case study and practical suggestions for assisting parents through these difficult situations.

[Very premature births: Dilemmas and management. Part 1. Outcome of infants born before 28 weeks of postmenstrual age, and definition of a gray zone]. / Naissances très prématurées : dilemmes et propositions de prise en charge. Première partie : pronostic des naissances avant 28 semaines, identification d'une zone grise.

With very preterm deliveries, the decision to institute intensive care, or, alternatively, to start palliative care and let the baby die, is extremely difficult, and involves complex ethical issues. The introduction of intensive care may result in long-term survival of many infants without severe disabilities, but it may also result in the survival of severely disabled infants. Conversely, the decision to withhold resuscitation and/or intensive care at birth, which is an option at the margin of viability, implies allowing babies to die, although some of them would have developed normally if they had received resuscitation and/or intensive care. Withholding intensive care at birth does not mean withholding care but rather providing palliative care to prevent pain and suffering during the time period preceding death. The likelihood of survival without significant disabilities decreases as gestational age at birth decreases. In addition to gestational age, other factors greatly influence the prognosis. Indeed, for a given gestational age, higher birth weight, singleton birth, female sex, exposure to prenatal corticosteroids, and birth in a tertiary center are favorable factors. Considering gestational age, there is a gray zone that corresponds to major prognostic uncertainty and therefore to a major problem in making a "good" decision. In France today, the gray zone corresponds to deliveries at 24 and 25 weeks of postmenstrual age. In general, babies born above the gray zone (26 weeks of postmenstrual age and later) should receive resuscitation and/or full intensive care. Below 24 weeks, palliative care is the only option offered in France at the present time. Decisions within the gray zone will be addressed in the 2nd part of this work.

[Very premature births: Dilemmas and management. Second part: Ethical aspects and recommendations]. / Naissances très prématurées : dilemmes et propositions de prise en charge. Seconde partie : enjeux éthiques, principes de prise en charge et recommandations.

In the first part of this work, the outcome following very premature birth was assessed. This enabled a gray zone to be defined, with inherent major prognostic uncertainty. In France today, the gray zone corresponds to deliveries occurring at 24 and 25 weeks of postmenstrual age. The management of births occurring below and above the gray zone was described. Withholding intensive care at birth for babies born below or within the gray zone does not mean withholding care but rather providing palliative care to prevent pain and suffering during the time period preceding death. Given the high level of uncertainty, making good decisions within the gray zone is problematic. Decisions should be based on the infant's best interests. Decisions should be reached with the parents, who are entitled to receive clear and comprehensive information. Possible decisions to withhold intensive care should be made following the procedures described in the French law of April 2005. Guidelines, based on gestational age and the other prognostic elements, are proposed to the parents before birth. They are applied in an individualized fashion, in order to take into account the individual features of each case. At 25 weeks, resuscitation and/or full intensive care are usually proposed, unless unfavorable factors, such as severe growth restriction, are associated. A senior neonatologist will attend the delivery and will make decisions based on both the baby's condition at birth and the parents' wishes. At 24 weeks, in the absence of unfavorable associated factors, the parents' wishes should be followed in deciding between initiating full intensive care or palliative care. Below 24 weeks, palliative care is the only option to be offered in France at the present time.

End-of-life decisions in the newborn period: attitudes and practices of doctors and nurses.

The aim of our study was to assess the attitudes and practices of doctors and nurses about end-of-life decisions and compare our results with those observed in different European countries. The data was collected from nurses and doctors, using a standardized questionnaire adapted from the EURONIC study. A total of 250 structured questionnaires were delivered, and 135 (77%) of them were accepted for analysis. The end-of-life decision was taken in 39.4% of the hospitals and personal involvement was 40%. Although an ethical committee was present in the hospitals of 61.5% of responders, a written policy was present in only 3.1% of the units. The mean attitude score was 6.5. Seventy-five percent of the contributors agreed that everything possible should be done to ensure a neonate's survival regardless of the prognosis and 65.2% of responders believed that costs of health care should not affect nontreatment decisions. Most of the responders (65.2%) agreed that severe mental disability as an outcome was equal to or worse than death. In patients in whom medical intervention would be futile, or would not offer sufficient benefit to justify the burdens imposed, hospitals should set up a functional ethical committee in order to decide in matters of withholding or withdrawing intervention.

Neonatal end-of-life decisions and bioethical perspectives.

In the nineties the EURONIC project documented the staff views and practices regarding ethical decision-making in neonatal intensive care units of eight Western Europe countries: France, Germany, Great Britain, Italy, Luxembourg, Netherlands, Spain and Sweden. This paper reviews the changes occurred in the ethical and legal background of these countries, and discusses possible influences on neonatal care practices. To a certain extent, many of these changes appear to be in line with the neonatal physicians' views and attitudes previously documented by the EURONIC project, while some are not. Large differences persist within Western Europe on what constitutes appropriate neonatal end-of-life care.

Enfermagem cuidando do recém-nascido na Unidade de Terapia Intensiva Neonatal: um olhar ético da ação profissional / Nursing care of the newborn in the Neonatal Intensive Care Unit: an ethical look at the professional action

Trata-se de um estudo do tipo qualitativo, sobre as ações experienciadas pela equipe de enfermagem no cotidiano da Unidade de Terapia Intensiva Neonatal (UTI Neonatal), tendo como objetivo apreender os aspectos éticos implícitos nas ações experienciadas pelos profissionais de enfermagem ao cuidar do recém-nascido (RN). Foram utilizados como referencial teórico-filosófico alguns autores renomados como: Mehry, Pegoraro, Pessini, entre outros. A abordagem metodológica aplicada no estudo foi a fenomenologia sociológica de Alfred Schutz, buscando, na intencionalidade das ações de enfermagem, a motivação que sustenta este cuidar. A aproximação face a face aos sujeitos do estudo deu-se solicitando o seguinte: Fale-me sobre a sua experiência ao cuidar de um RN no cotidiano da UTI. Para alcançar o objetivo proposto, utilizei as questões orientadoras da entrevista fenomenológica: O que você tem em vista ao cuidar do RN na UTI? Em relação à ética, o que você pensa ao cuidar do RN? As entrevistas foram realizadas com 16 profissionais da equipe de enfermagem da UTI de uma Maternidade Pública do Município do Rio de Janeiro, escolhidos de forma aleatória. Foram respeitados os critérios estabelecidos pela Resolução nº 196/96, garantindo a privacidade e o anonimato dos entrevistados, bem como aprovação do estudo pelo comitê de ética em pesquisa. A partir da análise das falas emergiram três categorias, que possibilitaram a apreensão dos aspectos éticos das ações de enfermagem na UTI como um típico. Esses profissionais têm em vista realizar o melhor cuidado desejando a cura e a alta do RN, apoiando-se na tecnologia para valorizar a perspectiva humana do cuidado na UTI e na possibilidade de agir com ética. Na realidade pesquisada, a tecnologia manifestou-se de maneira positiva no projeto intencional dos profissionais, mostrando uma enfermagem que acredita estar fazendo o seu melhor, envolvida com as questões éticas e humanas...

This is a qualitative study about experienced actions in the daily routine of the Neonatal Intensive Care Unit (NICU) by the nursing staff. It aims to understand implicit ethical aspects in experienced actions of nurses concerning the newborn care. Mehry. Pegoraro, Pessini and others renowned authors were used as theoretical and philosophical reference. The sociological phenomenology of Alfred Schutz was the methodological approach of the study as it seeks the motivation that confirms this care by the intention of nursing actions. The face-to-face approach to people of this study asked the following: Tell me about your experience in taking care of newborns in a NICU routine? Guiding questions of the phenomenological interview were used to achieve the proposed objective: What do you have in mind about taking care of newborns in a NICU? What do you think about when taking care of a newborn in relation to ethics? Sixteen professionals chosen at random of the nursing staff of a public hospital in the city of Rio de Janeiro carried the interviews out. The established criteria of the 196/96 resolution ensured the privacy and anonymity of the respondents and approves the study by the ethics committee on research. Three categories emerged from the analysis of the discourse and they allowed the understanding of ethical aspects of typical actions of the nursing staff in an Intensive Care Unit. These professionals aims to achieve the best care as they wants the newborn left the hospital well. So, they rely on technology in order to value the human perspective of care in the NICU and the ability to act ethically. The research proved that technology is a positive instrument in the intentional design of the nursing staff as it shows professionals who believe that ethical and human aspects help them to do their best...

Periviable babies: Italian suggestions for the ethical debate.

With the advancement of medical technology, the outcomes for high-risk infants have greatly improved. However, hand and hand with the more positive result of saving neonates, modern neonatal intensive care has also brought to light several issues regarding the ethical grounds in infant care. One of the greatest problems concerns newborns at the threshold of viability. Treatment guidelines have been formulated for these babies in different countries all around the world and there is the general consensus to withhold resuscitation in neonates when gestational age in less than, or equal to 23 weeks, with intensive care ensured for infants at 25 weeks' gestational age. In order to provide helpful suggestions during the initial management of the threatened birth of an infant with a gestational age of 25 completed weeks or less, we conducted a study for reviewing international studies on survival and morbidity rates, international guidelines and practice recommendations. This gave rise to the creation of a consensus document subsequently submitted to the Italian Scientific Societies for approval. The 'Carta di Firenze' does not attempt to deal with the problems related to pediatric euthanasia or eugenetics: its aim is to protect the infant and the mother from undue suffering although addressing recommendations for the work of clinicians.

Conscientious objection: a potential neonatal nursing response to care orders that cause suffering at the end of life? Study of a concept.

This article is an exploratory effort meant to solicit and provoke dialog. Conscientious objection is proposed as a potential response to the moral distress experienced by neonatal nurses. The most commonly reported cause of distress for all nurses is following orders to support patients at the end of their lives with advanced technology when palliative or comfort care would be more humane. Nurses report that they feel they are harming patients or causing suffering when they could be comforting instead. We examined the literature on moral distress, futility, and the concept of conscientious objection from the perspective of the nurse's potential response to performing advanced technologic interventions for the dying patient. We created a small pilot study to engage in clinical verification of the use of our concept of conscientious objection. Data from 66 neonatal intensive care and pediatric intensive care unit nurses who responded in a one-month period are reported here. Interest in conscientious objection to care that causes harm or suffering was very high. This article reports the analysis of conscientious objection use in neonatal care.

[Life-prolonging treatment--an analysis of two cases]. / Livsforlengende behandling - analyse av to kasuistikker.

BACKGROUND: Life-prolonging treatment is associated with many difficult ethical considerations, especially when such treatment is withdrawn. MATERIAL AND METHODS: Two cases are presented where life-prolonging treatment played a key part. The two were analyzed by using a 5-point checklist that the Clinical Ethics Committee at Haukeland University Hospital has developed. We were visiting students at a neonatal department and an intensive care unit, we read relevant literature and consulted experienced doctors. RESULTS AND INTERPRETATIONS: We saw that well-founded decisions were made for each of the two patients studied; this is in accordance with our experience from hospital departments. We believe that continuous technological advances in medicine require doctors to make more decisions involving ethical considerations now than before, but that they are not necessarily better equipped to do so. There is a need to improve integration of medical ethics in the education of medical students, and for doctors to have more knowledge about existing ethics regulations.