Health professionals devoted to the care of ill newborns often face complex decisions with a high clinical and ethical uncertainty. One such scenario is that of patients with a poor prognosis eligible for treatment with aggressive and invasive procedures, but whose potential benefits are questionable and that carry a high risk of causing pain and discomfort, prolonging the dying process unnecessarily or greatly impairing the patients’ quality of life.1,3

In neonatal medicine, the professionals that care for the patient and the parents are the individuals responsible for making decisions based on the “best interest” of the patient. However, when it comes to severely ill newborns, there may be widely different views on what may be best for the patient, as the values of the individuals responsible for making the decision come into play in defining such best interest.4

This gives rise to the difficulties involved in making the best decision in the context of ethical uncertainty as to what constitutes the best interest. Medicine, like clinical ethics, is a practical discipline based on the logic of probability as opposed to the logic of certainty. This means that while uncertainty should be reduced to the minimum possible in decision making, it cannot be eliminated completely. Thus, the goal is not to achieve certainty, which does not exist, but to manage uncertainty rationally and make a sensible decision. This is attained through a process of deliberation.5–7

The systematic use of the deliberative process is a tool that can be very useful in clinical decision making in the field of neonatology, but it requires learning and practice.7 This tool is not restricted to ethics committees, but is available to health professionals facing conflict-ridden situations, especially if there is ethical uncertainty. This process entails an ordered sequence of actions that can be summarised into deliberating on: 1) the facts, 2) the conflicting values and 3) the possible courses of action, as well as the circumstances and predicted consequences of the decision to be made (Fig. 1 and Table 1).

Figure 1.

Stages of the deliberative process

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The uncertainty regarding the outcome of many illnesses has been described as one of the most frequent barriers experienced by professionals when it comes to initiating PC. However, there are many diseases that, once diagnosed, should lead to a palliative approach due to their life-threatening or life-altering nature, without waiting for the patient to arrive to the final stage when approaches other than PC have been exhausted.8 The neonatal period is the period in childhood when the risk of death is highest, mainly on account of congenital anomalies, preterm birth and its consequences, and perinatal asphyxia.3,9 There are 3 general areas in which PC is required: foetuses/newborns with fatal congenital anomalies, preterm newborns at the limit of viability, and those that do not respond to intensive care.

Despite the advances in perinatal PC in recent decades, there is not a standardised best care model for it.10 In recent years, emphasis has been placed on the importance of initiating PC at an early stage, even before birth.10–12 In perinatal PC (“perinatal hospice”), neonatologists and obstetricians need to establish an interdisciplinary care plan with the agreement of the parents and before birth. Although perinatal PC is not practiced in every hospital, there is evidence of benefits to patients and their parents in its implementation, especially in that it facilitates bonding, parting, and bereavement.10,11,13–15

One of the cornerstones of PC is establishing trust through verbal as well as nonverbal communication.2,3,13,16 Such communication requires dedication, empathy and patience, helping parents understand what is happening, the changes that are going to take place and the resources that are available. We need to be empathic in promoting the bonding of parents with the child, so that they partake in the care and in decision making. We need to engage in active listening to learn about their fears, wishes and expectations, allowing them to express their feelings and identifying what matters to them, so that we can establish a therapeutic partnership that takes into account spiritual particularities and anticipate their requests2,13,16,17 (Fig. 2).

Figure 2.

Key points in the relationship of health care professionals with parents in PC.

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Palliative care must promote and maximise the newborn's wellbeing, provide an appropriate environment for death, ideally in an individual room, and facilitate the rites and customs of each family, taking into account psychological, emotional and spiritual aspects in the child and the family.12 Contact with the child should be promoted (skin-to-skin contact, caresses, holding, etc.) as well as the presence of parents at the time of the child's death.15 We could explicitly ask parents: What would you like to do with your child before we adjust treatment?18 When health care professionals accompany families in this process appropriately, it helps the family come to terms with their loss and initiate a healthy bereavement process (Table 2).2,3,13,16,17 The entire care team must be acquainted with the process that has been agreed with the parents to avoid inconsistencies or dissonance in communication and care.19 The nurse, who is the main link between the parents and the medical team, is key in the communication process, filling gaps in information and ensuring that information is well understood. The unit must be reorganised so that one nurse is exclusively dedicated to the child and his or her family17,19 (Fig. 2).

Hospital-based PC results in prolonged lengths of stay that have an impact on the child and on family dynamics, so PC should be offered wherever the family desires, be it in a hospital that is closer to the home or in the home itself.20,21 The PC strategy of the Spanish National Health System for the 2013–2016 period explicitly stated the objective of “providing the population of children and adolescents with advanced terminal disease and their families integral assessment and care adapted to present circumstances at all times, and at any point in the course of disease.” However, although the strategic plans of different autonomous communities reflect this need, the reality is that there are hardly any hospitals with integral PC units for the paediatric population.22 This deficit is even more marked when it comes to paediatric home-based PC programmes, which have hardly been introduced, and there are no specific protocols for neonatal patients guaranteeing the continuity of care throughout the process. Home-based EoLC must be planned with the parents, and parents and health professionals must have the necessary skills and equipment to deliver it. Physical, social, emotional and spiritual support must be provided to advance the wellbeing of the child and the family throughout the disease and during the bereavement process after the child's death (Table 2).

Entrance of a child to a PC programme does not end the relationship of the patient with the specialty care team that treats the underlying disease, and a collaborative care approach should be promoted. The entire PC process must be documented in the medical record, including the steps that were taken and any difficulties encountered.

Consideration of organ and tissue donation following death must be part of EoLC. Before implementing a type III neonatal donation programme, it is important that neonatal units have established EoLC programmes with the purpose of guaranteeing optimal EoLC independent of the donation process.

Spain has one of the highest rates of donation worldwide, with the lowest rates of family refusal. However, the gap between the supply and demand of organs for transplantation has been widening due to the decrease in mortality from traumatic brain injury and improvements in the treatment of neurocritical patients, with 7% to 9% of patients dying while on the waiting list each year.23

Infants aged less than 1 year who require a heart transplant are the group with the highest mortality rate among patients in transplant waiting lists. The need to increase donation rates has spurred the development of strategies worldwide, and in Spain in particular, to Plan 40 of the Spanish National Transplant Organization (ONT), to explore new pathways for organ donation and use, including non-heart beating donation. On the other hand, the need for organs in very young children has expanded the scope of this strategy to the paediatric and even the neonatal population.24

Unlike in donation following brain death, in non-heart beating donation the organs are harvested after the onset of ventricular asystole. It is also known as “donation after the circulatory determination of death,” as death is not determined based on the irreversible loss of cardiac function, but on the irreversible loss of circulatory (and respiratory) function.25 Death is confirmed after 5min of apnoea, unresponsiveness and an absent pulse (established by the absence of a curve in blood pressure monitoring or through echocardiography).26 Since the 1995 International Meeting in Maastricht, non-heart beating donors have been classified into four categories, and category III corresponds to donors in who the cessation of circulatory and respiratory function takes place after withdrawal of life support owing to the judgement that such support is futile.25

Decisions to withdraw or withhold treatment are currently part of neonatal clinical practice. Many patients die once the care team and the family make the decision to withdraw or withhold treatment. It is in such situations, if a series of requisites are met, that non-heart beating donation can be suggested (Fig. 3).

Figure 3.

Management algorithm for a potential type III non-heart beating neonatal donor.

BP, blood pressure; ECG, electrocardiogram; EoLC, end-of-life care; LLST, limitation of life-sustaining treatment; PDA, patent ductus arteriosus; ONT, Spanish National Transplant Organization; WLS, withdrawal of life support.

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Taking into account that half of paediatric deaths occur in the neonatal period and that most of them (68%–86%) follow decisions to withdraw or withhold treatment,3,27,28 as well as the difficulty of diagnosing brain death, neonatal intensive care units should consider the possibility of offering the option of controlled non-heart beating donation. Furthermore, the recent international literature includes several reports of successful transplantation of organs from non-heart beating donors,29,30 with statements in support of the incorporation of this type of donation in the neonatal period. It is estimated that between 6% and 8% of admitted newborns could be candidates for non-heart beating donation.24,31,32 On the other hand, there is a debate on some aspects of this type of donation, and of how it should be incorporated in neonatal care (Table 3).33,34

Such a programme requires training, practice, and the design of specific protocols led by a multidisciplinary team with participation of all professionals involved in the process (ONT, neonatologists, paediatric critical care specialists, transplant coordinators, surgeons, anaesthesiologists, nurses etc.). The introduction of donation in neonatal patients must occur in the framework of a nationwide programme in order to allocate the organs to the most suitable patients and to prevent their death while in the waiting list.

Jameton provided the first definition of moral distress as knowing the right course of action but being unable to pursue it, leading to psychological suffering and/or disturbances in health professionals.35 Thus, moral distress refers to stress associated with ethical concerns and with the perception of being unable to act according to one's conscience.36

Among the situations that carry a risk of moral distress, some are particularly likely to cause it.37–39 In addition, the distress experienced by a single professional is not contained to the individual, but is conveyed to the team, impacting the care of the patient and the family3 (Fig. 4).

Figure 4.

Emotional stress, its repercussions, and strategies for its management.

EoLC, end-of-life care; LLST, limitation of life-sustaining treatment.

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Moral distress is not an occasional time-limited psychological phenomenon. Health professionals face and ‘overcome’ moral and ethical problems frequently. However, each deliberation and each decision have a psychological and moral toll that persists in the form of what Epstein and Hamrictermed amoral residue.40 This moral residue can have a cumulative effect unless individual and group mechanisms are set in place to address and resolve it. Clinical bioethics can be a helpful tool to reduce moral distress insofar as it helps to manage ethical conflicts better.

Individual, group and institutional factors contribute to the development, progression and perpetuation of moral distress. On one hand, an individual's personality and coping skills to face and resolve situations that pose a psychological or moral conflict can act as risk or protective factors for moral distress. On the other hand, workplace-related factors, such as the ethical climate, the internal organisation, communication between professionals or the relationship with the management are elements that can also promote or protect against moral distress in health professionals and in families.

But as is the case of any stress, that is, of any emotional response to an actual event (or the experience of such event), moral distress can be a useful element in improving the status quo. Very low levels or the absence of moral distress could be indicative of low expectations and a greater degree of conformity. Thus, the goal is not to achieve the absence of moral distress, but to detect and manage it at the levels of the individual, the group and the institution, which should be a priority in national public health systems. In this sense, the need for psychological support is not exclusive to patients and their families, but also extends to professionals. Caring for vulnerable patients, especially patients that may die, can have a negative impact on health professionals and therefore reduce or end their motivation and the expectations they have set for themselves both in their personal and professional lives, to the point that it may influence decision making.3 Therefore, the development of specific skills to manage emotions is essential in the health care system at large and in neonatal units in particular. The strategies implementedto control and reduce moral distress must be based on: 1) the need to care for oneself to be able to care for others; 2) the introduction of “self-care” dynamics in teams and 3) improving training on “communication skills”.

Strategies that facilitate the identification and channelling of emotions or the management of their intensity, such as being fully present, or “mindfulness”, can be a great help in retaining composure and empathy, and allow us to choose how to act, as opposed to falling into reactive and automatic patterns of behaviour (Fig. 4 and Table 4).