Categories: Care, Featured, and Policy.

Courtesy of Paliativos Sin Fronteras/Palliative Notes Magazine 2021.

Authors: Carlos Eduardo Jouan Guimaraes, Pedro Medeiros Junior and Josimario Silva – Brazil

The newborn in all cultures is the most vulnerable and protected human being because he or she represents a breath of life and hope for the family and society that receives him or her. Due to this fact, when a baby is diagnosed in-utero or shortly after birth with a pathology that limits life or seriously compromises its quality, it is considered necessary to do “everything” to keep it alive.

Technological advances have made it increasingly possible to diagnose intrauterine congenital malformations, many of which are considered life-limiting. Currently, in Brazil, it is estimated that 3% of live births have a malformation and that 1.2% of these births have serious health consequences for the child. Early diagnosis can lead to treatments that increase survival, such as the placement of an endotracheal balloon by intrauterine surgery for the diagnosis of diaphragmatic hernia. This procedure can decrease perinatal mortality from 90 % to 50 %. In scenarios such as this, neonatal ICUs have enabled the increasing recovery of thousands of babies’ lives.

However, in some cases, the use of technology goes beyond therapeutic obstinacy and unfortunately moves towards futility. Newborns who remain hospitalised for long periods in intensive care units (ICU), dependent on invasive procedures and measures, are often transferred from neonatal to paediatric ICU and their social life with other family members is intensely limited. When discharge occurs, it is dependent on specialised care and with great limitations, thus diminishing the quality of life of the child and family. Exclusive prolongation of the dying process with the suffering of the child and family culminates in the three-dimensional scenario of dyskinesia or even survival with severe neurological injuries and severely compromising debilitating quality of life issues. US studies estimate that about 15,000 newborns are in this condition each year.

In the neonatal period, decision-making is often difficult due to the large variability of clinical response observed in patients. In addition, neuroplasticity brings uncertainties to healthcare professionals regarding prognosis and, consequently, therapeutic limitation decisions. Therefore, it is necessary to use a method that assists the medical team in making decisions in order to bring adequacy and tranquillity to the therapeutic process, as well as to minimise conflicts and suffering for relatives and care teams. Deli-berar, from the Latin deliberae (from + librare – despite), is thus the attitude conducive to this end, since the deliberative method aims to lead to a decision on the basis of reflection on the options. These arise when, in addition to clinical facts, biography, values and family decisions are considered.

Final considerations

Making decisions in neonatology require a great deal of ethical effort. Babies are an affirmation and a sign of hope for their families and for the society that receives them.

Faced with a perinatal diagnosis of an impairment or shortly after birth, both the family and the health care team are faced with a difficult moment:

For the family, because the death of their idealised child, without any pathology who grows up and forms his own family, breaks the expected natural history of his parents.

For health professionals, who will be faced with the ethical and moral dilemma of how far care and treatment should be maintained without causing suffering to the patient and his or her family.

When the diagnosis is of a condition that is not compatible with life, decisions on therapeutic limitation become a little less difficult to make. However, even in these cases, the high expectations of families for the survival of their children can generate great conflict between health care teams and family members, as well as immense emotional exhaustion for all.

There is much talk of a grey zone in neonatal cases and these, along with the issue of neuroplasticity, are major drivers of conflict both between the family and the health teams, as well as between the teams themselves. There are several factors to consider that can hinder decision-making in a delivery room or neonatal ICU.

To facilitate this decision-making, it is noted that good communication between the health team and the family is the first step to avoid conflicts and, if they occur, to resolve them quickly and with greater family satisfaction. Through effective communication, we can obtain the information (prior knowledge of the family about their child’s illness; prognosis; treatment expectations; biography of the family with their values, including spiritual ones) to be used together with the clinical data (diagnosis of the newborn, prognosis, possible treatment for the patient in question, response to treatments already carried out). This is achieved through the most prudent and individualised action for that case, aiming at the good of both the newborn and his or her family. Using the deliberative method for decision-making in neonatology allows for more humane and dignified treatment of the newborn, since, in addition to the decision encompassing the best possible technique, it is also based on analysis, respect and consideration of the family’s values and wishes.


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