La ética en la comunicación del diagnóstico de síndrome de Down / Ethics in the communication of down syndrome diagnosis

La comunicación del diagnóstico de síndrome de Down tiene serias implicaciones éticas ya que la finalidad del mismo puede ser eugenésica o terapéutica. El objetivo de este artículo es, por un lado, resaltar el papel fundamental que desempeñan los profesionales sanitarios en la comunicación del diagnóstico y la posterior decisión de la madre. Por otra parte, se exponen las recomendaciones sobre la manera de comunicar un diagnóstico. Por último, se analiza el estado de la cuestión en España, para lo que se exponen los resultados de un estudio descriptivo transversal con una muestra de 352 madres en la que expresan, mediante una encuesta, sus experiencias personales sobre como han recibido la noticia. La conclusión a la que se llega es que la comunicación del diagnóstico de síndrome de Down se puede mejorar en muchos aspectos

Down Syndrome diagnosis communication has got serious ethical implications, since the aim thereof can be either eugenic or therapeutic. The purpose of this paper is, on the one hand, to highlight the fundamental role which sanitary professionals play in diagnosis communication and the subsequent decision of the mother. On the other, recommendations on the way to communicate a diagnosis are set out. Finally, in order to analize the state of play in Spain the results of a cross-sectional descriptive study with a sample of 352 mothers are exposed. In this study the mothers express, by means of a survey, their personal experiences of how they have received the news. It is concluded that the communication of Down syndrome diagnosis can be improved in many aspects

The Ethics of Perinatal Care for Black Women: Dismantling the Structural Racism in "Mother Blame" Narratives.

Perinatal and neonatal nurses have a critical role to play in effectively addressing the disproportionate prevalence of adverse pregnancy outcomes experienced by black childbearing families. Upstream inequities in maternal health must be better understood and addressed to achieve this goal. The importance of maternal health before, during, and after pregnancy is illustrated with the growing and inequitable prevalence of 2 common illnesses, pregestational diabetes and chronic hypertension, and 2 common conditions during and after pregnancy, gestational diabetes and preterm birth. New care models are needed and must be structured on appropriate ethical principles for serving black families in partnership with nurses. The overarching purpose of this article is to describe the ethics of perinatal care for black women; to discuss how social determinants of health, health disparities, and health inequities affecting women contribute to poor outcomes among their children; and to provide tools to dismantle structural racism specific to "mother blame" narratives." Finally, strategies are presented to enhance the provision of ethical perinatal care for black women by nurses.

Ethical Dilemmas in Postnatal Treatment of Severe Congenital Hydrocephalus.

Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with severe disability. It might be thought that, should parents agree, palliative care and limitation of treatment would be clearly permissible on the basis of the best interests of the infant. However, severe congenital hydrocephalus illustrates some of the neuroethical challenges in pediatrics. The permissibility of withholding or withdrawing treatment is limited by uncertainty in prognosis and the possibility of "palliative harm." Conversely, although there are some situations in which treatment is contrary to the interests of the child, or unreasonable on the grounds of limited resources, acute surgical treatment of hydrocephalus rarely falls into that category.

Ethics and hypothermia treatment.

Hypothermia is the first effective neuroprotective intervention for newborns who are critically ill following a life-threatening asphyxial insult. It is not surprising that it has raised complex and controversial ethical dilemmas for investigators and clinicians. Given the history of iatrogenic disasters in neonatology, there has been an understandable reluctance to incorporate hypothermia into routine clinical practice until there is persuasive evidence from high quality randomised trials. This article reviews ethical issues that arose during the design of the original clinical trials, the implications of accumulating evidence of safety and efficacy, and the problems of ensuring informed parental participation in treatment decisions.

Ethical issues in perinatal mental health.

The principles of autonomy, beneficence, nonmaleficence, and justice can guide clinicians in finding ethical approaches to the treatment of women who have psychiatric disorders during preconception, pregnancy, and postpartum. Table 1 summarizes some clinical dilemmas in perinatal mental health care, the ethical conundrums posed by these situations, and guiding principles or tools that can help clinicians resolve ethical conflicts. The concept of relational ethics helps resolve apparent mother-offspring ethical conflicts, and the practice of preventive ethics helps anticipate and reduce the risk of ethical dilemmas and adverse clinical outcomes. These central principles suggest the following guidelines in caring for perinatal women: In situations that seem to pit the needs of a pregnant or postpartum woman against the needs of her fetus or baby, reframe the problem to find a solution that most benefits the mother-baby dyad while posing the least risk to the dyad. In evaluating a pregnant woman's ability to make autonomous, informed decisions about medical care, assess her ability to decide on behalf of both herself and her fetus. When explaining the risks of treatments such as psychotropic medication during pregnancy, avoid errors of omission by also explaining the risks of withholding the treatments. Apply the principle of justice to ensure that women are not stigmatized by having psychiatric disorders or by being pregnant. When screening for maternal psychiatric symptoms, ensure that the benefits of screening outweigh the ethical costs by designing effective follow-up systems for helping women who have positive screens. When treating women of reproductive age for psychiatric disorders, proactively discuss family planning and, when appropriate, the anticipated risks of the illness and the treatment during future pregnancies. Offer preventive interventions to reduce these risks.

Postnatal reproductive autonomy: promoting relational autonomy and self-trust in new parents.

New parents suddenly come face to face with myriad issues that demand careful attention but appear in a context unlikely to provide opportunities for extended or clear-headed critical reflection, whether at home with a new baby or in the neonatal intensive care unit. As such, their capacity for autonomy may be compromised. Attending to new parental autonomy as an extension of reproductive autonomy, and as a complicated phenomenon in its own right rather than simply as a matter to be balanced against other autonomy rights, can help us to see how new parents might be aided in their quest for competency and good decision making. In this paper I show how a relational view of autonomy--attentive to the coercive effects of oppressive social norms and to the importance of developing autonomy competency, especially as related to self-trust--can improve our understanding of the situation of new parents and signal ways to cultivate and to better respect their autonomy.

The pregnant and the parturient.

Society and the culture of health care delivery have radically changed over the last thirty years, the rate of change increasing exponentially towards the present time. Maternity care has been part of that change. Previously paternalistic obstetricians told women whether they should or should not become pregnant, advised hospital confinements, kept women in hospital for days after their confinements, and discussed little of their management with the women themselves. Now women have choice and they exercise that choice. There is choice as to the kind of antenatal care women wish to have, where they will deliver their baby and who will look after them during their pregnancy and delivery. This was, and to a certain extent still is, threatening to obstetricians. But there are also genuine concerns as to whether these changes will adversely influence the morbidity and mortality of mother and child. This chapter deals with issues of maternal choice from pre conception through to the post natal period, looking at how the exercise of maternal choice may conflict with the advice of the medical profession, potentially leaving accountability and responsibility a very grey area and how all this impinges on the anaesthetist.

The power of place.

OBJECTIVE: to describe the power that 'place' holds over the postnatal-care experiences of women. DESIGN: a study informed by phenomenology within a feminist framework was undertaken to examine the experiences of women electing early postnatal discharge. Three extended conversations with each woman participating in the study were audiotaped and transcribed. Journal notes made by the researcher added to the audiotaped data. Thematic analysis revealed major structures of experience. SETTING: data were obtained from conversations with women in their respective homes. PARTICIPANTS: five women, parity 1-3, living in the Sydney metropolitan area and birthing in their local hospitals participated in the study. FINDINGS: four major constructs of experience were revealed through analysis and include spatiality, corporeality, temporality and relationality. In this paper, components of spatiality expressed through the power place exerts in matters of physical environment,control, confidence, safety, time, talk and the heart of the matter are presented. KEY CONCLUSIONS: the experiences of women entering the foreign place of hospital to birth their children were those of alienation and disempowerment while the familiar territory of home offered stronger feelings of security and support. IMPLICATIONS FOR PRACTICE: failing to recognise the impact of place on the experiences of postnatal women reduces the likelihood that midwives will be able to offer sensitive and appropriate care.