Another finding that emerged from data analysis was that key predisposing factors associated with uncertainty distress among neonatologists might also serve as key predisposing factors associated with constraint distress among neonatologists and vice versa. NICU directors, neonatologists’ colleagues or hospitalized infants’ parents may serve as constraints or factors that cause decision uncertainty to remain high (such as when neonatologists perceive their decision-making support as lacking or inadequate). Furthermore, it should be noted that factors such as the NICU director, colleagues and parents may serve not only as direct constraints but also as indirect constraints: There is, of course, the director, there are the parents, there are the other colleagues to whom you are accountable, literally or metaphorically (P10).
NICU directors
The vast majority of participants noted that the NICU director is perceived as an “orchestra director”, i.e., as responsible for a good mood and communication among health care workers in the NICU and as the person who suggests the “optimal” solution or recommendation in cases of tough situations that involve difficult ethical dilemmas. The director of the NICU may support the decision of a neonatologist working in the NICU. He or she may be the most reliable source of support. NICU directors who do not take a clear stance on an infant’s treatment do not contribute to mitigating the neonatologists’ decision uncertainty, namely, such directors do not reduce neonatologists’ decision uncertainty. Unsurprisingly, while participants working in the NICU did not feeling forced to comply with their directors’ recommendations, most participants noted that they would show respect for hierarchy with the aim of mitigating their decision uncertainty. As a result, they felt that they were prevented from acting on what they knew to be right. Participants always mentioned this point in cases in which they felt “forced” to continue providing care for an infant despite the fact that their own view was completely in opposition to continued care. The data analysis indicated that NICU directors represent a key predisposing factor associated with intense constraint distress among neonatologists. However, several participants declared that they tended to prioritize their own values and beliefs over those of other stakeholders involved in shared decision-making, i.e., NICU directors, colleagues, and parents. For instance, despite the director’s recommendation to stop a treatment that – in the director’s opinion – may cause both baby and neonatologists to suffer a great deal for no reason, some participants continued providing life-sustaining treatment, that is, they continued to fight for the slightest chance of success. Participants always mentioned this point in cases in which they felt “forced” to cease providing care to an infant despite the fact that their own view was completely in opposition to this decision. None of the participants claimed that they had stopped or would stop providing care for an infant when their NICU director had expressed the opposite view. However, they described their intense moral (constraint) distress in this context:
I am in conflict with my personal beliefs, and I am stressed and psychologically overwhelmed when I feel that the right thing to do for the newborn is something else, that I am intervening and torturing the baby while there is no hope, but eventually I am pushed by other factors, such as the administration or the clinic protocol or the parents, to act in another way (P15). Participants P14, P16, P19, and P17 made similar claims, adding that …there I feel extremely pressed because I think that what I’m doing to the baby is not only meaningless but also harmful and bad (P17). Participant P3 described her experience of constraint distress associated with the NICU director. As she noted, The director has the final word. I may have a different opinion, but I have to follow and respect the hierarchy. I remember a case of hospital discharge many years ago for which I was facing a lot of pressure, as the newborn had to leave the intensive care unit to avoid having too many babies in the unit because there were no more beds available. This specific baby was not properly checked, in my opinion (P3).
Nevertheless, Participant P8 mentioned a situation in which she acted on her refusal to comply with the requests and recommendations of her NICU director: Now, for example, the director says that in a certain case, we shouldn’t intervene aggressively because it is a hopeless case, incompatible with life, and the baby will die, so we shouldn’t lose energy, neither the doctor nor the baby. Yes, there’s where I have a problem. Yes. There, I act according to my values. In such a case, I would do what I believe is right. Anybody can have their opinion, but we did not graduate together, nor did we take an oath together, and nobody can tell me that their beliefs are superior to mine. In such a case, I will do what I believe is right…. I had a baby have blood transfusion in secret once. I don’t consider it ethical for a baby to die of anaemia (P8). Similarly, another participant noted that I proceed according to my values and beliefs; therefore, my values and beliefs…. free me, for I know that I acted according to my conscience, and that will not lead me to a moral dead end, I will sleep tighter, to put it this way (P9).
Neonatologists’ colleagues working in the same NICU
The data analysis indicated that neonatologists’ colleagues working in the same NICU represent a key predisposing factor associated with uncertainty or constraint distress among neonatologists. Participants noted that they felt a strong need for their colleagues’ approval or at least their colleagues’ support (not necessarily unequivocal support) when making a difficult decision regarding an infant’s resuscitation or care. They feel much better when their colleagues support their choices or at least do not make negative comments or say “I told you so” after the events in question. In that regard, good and effective communication among NICU staff members was reported to be a highly important factor for boosting neonatologists’ moods and enabling them to remain motivated at work and to avoid experiencing high levels of uncertainty.
Organizational problems in the NICU, such as poor relationships and ineffective communication among colleagues in the NICU, may also be important predisposing factors in the development of uncertainty distress. While a neonatologist’s colleagues who have previous experience with similar ethical dilemmas in clinical practice may support the decisions of that neonatologist, thus mitigating his or her uncertainty distress, these colleagues may also serve as constraints that prevent a neonatologist from acting on what he or she knows to be right; that is to say, such colleagues may cause them to experience constraint distress. To illustrate this point, we cite a quotation from the interview with Participant 13. As she said, …when I see doubt or a lack of acknowledgement in the eyes of my colleagues….. I feel the need for cooperation and acknowledgement from my colleagues, not doubt. I need them to help me when I face a dilemma.
Furthermore, participants in this study developed constraint distress because in discussions between the staff members working at a NICU, they expressed one view, while their colleagues expressed a completely contrary view. Indeed, some participants’ colleagues insisted on continuing the treatment in contrast to the existing guidelines for the sake of appearances (P14). As participants felt morally obliged to show respect for the good relationships and effective communication among NICU staff members, they felt as if they were prevented from acting on what they knew to be right. Participant P14 described his experience of constraint distress associated with his colleagues as follows: “Another factor of moral distress is when I don’t agree with my colleagues as to what we should do. That’s the worst… not simply to disagree, but to face a response, and in the end the prevailing view is not that of common sense or the protocol itself but rather the fact that we need to try for the sake of appearances. How should I put it differently? That’s what makes me wonder if we are really doing the right thing. I cannot get over it easily (P14).
Furthermore, all participants strongly supported the view that good cooperation and good organization within the NICU, decision support from colleagues and a lack of colleagues’ concerns regarding whether the decision made was correct are prominent factors associated with reductions in uncertainty distress:
To mitigate their feelings of uncertainty, participants highlighted the need for a good collaboration atmosphere (P1, P13), organization, unity, and unanimity in the NICU (P2, P13). Participants P19 and P20 explicitly highlighted the fact that the NICU director is a person who is committed to ensuring and promoting harmony and cooperation in the NICU as a workplace: The director plays an important role because he directs the whole situation. He sets the tone (P19). The director must lay the groundwork for collaboration. (P20). As Participant P13 said, I feel psychologically stressed when I see doubt in my colleagues’ eyes. I need their help when I face a dilemma (P13). Participants P15 and P19 made similar comments: … otherwise I have difficulty in functioning, or I might change jobs. Participant P20 also made a similar point, noting that For me, it is fundamental to have my colleagues’ support and cooperation. Participant P16 agreed with this view.
Parents’ wishes and attitudes
All participants agreed regarding the need for parental involvement in the decision-making process to the greatest extent possible (e.g., P14, P20): For extremely premature babies, I let parents have their own space and views (P12). However, participants expressed the opinion that parents could not play the key decision-making role (P3, P10, P14) because of their lack of medical literacy and their strong emotions (P3, P14), which prevent them from seeing reality clearly and cause them to make decisions that are not well-balanced. In that respect, participants noted that parents’ emotions may change over time (P10) and fathers may be less emotionally loaded than mothers (P12).
In most cases, parents may put great pressure on neonatologists (especially on empathetic neonatologists). They may express their demands or wishes either verbally, that is, through dialogue, or nonverbally, e.g., through an appealing look or facial expressions (P8). Unsurprisingly, our data analysis indicated that infants’ parents exert a great deal of pressure in the majority of cases (but not in every case), and they ask neonatologists to make every effort to keep their infant alive and functioning. For instance, participants noted that Parents can be stress factors (P2) … they pushed us to intervene and do whatever is possible. And this created extreme pressure and emotional load (P15). We constantly intervene in a newborn’s body that has already gone through a lot, and we know it will pass away. In most cases, we do it just because it is the parents’ wish, to tell you the truth (P16). Parents may demand that neonatologists do their utmost to save the life of their infant because of their willingness to care for and bring up the child, e.g., because it is perceived as a gift from God (despite the fact that it is disabled) (P2, P9, P19) or because of their desire to be at peace with themselves (P12). Indeed, various factors (including faint hopes, religiosity/spirituality, emotions, moral consciousness, parents’ need to touch their baby to realize that it has been on the earth as a human being, even for a short time) emerged from the data analysis as reasons why parents’ attitudes towards neonatologists caused them to exert pressure (that is, they wanted too much): We know that the child will suffer from severe cerebral palsy and mental retardation. Nevertheless, Greek parents expect the child, whatever child this is. They will say, this is God’s decision, this is what God decided for us. They are more sentimental in this part (P2). Furthermore, Participant P12 noted that There are parents who tell you, I don’t care about the baby’s condition, I want you to do everything you can to save this child. So, you ought to try, you have to. Because these parents want to feel that they did everything they could for this kid (P12).
While neonatologists do not feel as if they are explicitly prevented from acting on what they know to be right (for instance, to avoid resuscitation or to redirect the treatment provided), they may feel as if they face considerable pressure from parents to act in accordance with the parents’ demands. Unsurprisingly, empathetic neonatologists experience great emotional pressure. They put themselves in the position of parents who are experiencing a highly traumatic event. This situation is particularly prevalent for parents who have made multiple previous attempts to have a child through the use of artificial reproduction technology (P16, P18, P19), parents who want to touch their infant (who is still alive, albeit fated to die) (P19), or even parents who merely want to be at peace with themselves (to have a clear conscience) after having done everything possible for their infant (P12). In that context, Participant P14 noted that … [The child] may be intubated, have catheters, be mechanically supported by a thousand machines, but for them, this newborn baby exists. It is alive. Let it be mechanically supported by a thousand machines. It is alive. So, they hope (P14).
Participant P19 wondered whether keeping an infant alive even for a few hours may be of considerable importance to his or her parents since it offers them the opportunity to prepare themselves or even touch their living baby and thus to have a memory of their baby’s existence on the earth as a human being, even for a short time: Are these few days of life important because the parents try to prepare themselves? Or is it because they want to touch the child, to feel that this baby once existed for them? (P19) [Note, however, that as mentioned above, Participant P14 noted How is it possible to hit a newborn continuously and catheterize it at the very moment when it is dying? Am I doing that in order to prolong its life for 1, 2, 3 days?]. Furthermore, one participant noted that … the parents expect a good word, which I cannot say, and with their stares and verbal and nonverbal communication, I feel as if they are pushing me psychologically (P8). Similarly, Participant P6 noted that “…parents are under great pressure…we know that…they try to elicit from us even a single word indicating good news about the condition of their infant ….
As a result, neonatologists may exhibit empathy-driven emotional responses, which can serve as (soft, internal) constraints that may cause them to experience constraint distress. On the other hand, participants noted that neonatologists who exhibited interest, compassion and empathy and were viewed as doing their best to optimize the infants’ outcomes rather than simply fulfilling their operational duties under the law were more likely to gain mothers’ trust (P18).
Doctors may cause parents to become more persistent in the following situations. a) When the latter are not adequately informed or when they are overinformed: While all participants (e.g., P1, P2, P3, P9, P12, P13, P14, P15, P17, P19) expressed the view that parents should be provided with sufficient information, some participants expressed the view that parents should not be provided with overwhelming information regarding everything might be relevant to their decision: I don’t want to have them face my dilemmas and queries. Their own load is enough (P18). Besides, they have no scientific grounding (P3). b) When neonatologists invest excessive effort into the task of providing (“futile”) treatment to the infants, thus offering parents only a small amount of hope and encouraging them to develop the forlorn hope that their infant may survive (P15). c) When neonatologists show parents that they are merely doing their job: Basically, what parents need is to show that you personally care about their child and them and that you don’t simply do your job (P18). The great majority of parents look you in the eyes and wish to see that you care about their child and them (P20). Finally, d) when doctors create close emotional relationships with parents. Therefore, some participants noted that they kept parents at a distance (e.g., by speaking to them in the plural form) to avoid encouraging them to become more demanding or to prevent themselves from being involved with parents’ emotions (P17, P19). As Participant P4 noted, The more you associate with the parents and the more you get emotionally involved with them, the higher the moral pressure is (P4). Similarly, another participant noted that with parents, I keep a safe distance, to tell the truth. I don’t want to be very close to them as they can be pressing and insistent. They cross the line sometimes. They try to influence your judgement while they are driven by emotion (P19). Participants P17 and P20 expressed similar claims.
Furthermore, if parents do not take a clear stance on their infant’s treatment (e.g., because they are ill-informed) or do not share any decision-making responsibility, they do not contribute to the task of mitigating the neonatologists’ uncertainty distress. When parents show confidence in neonatologists to such an extent that they place considerable emphasis on neonatologists’ freedom to make decisions on their own, their contribution to the decision-making process is left to the discretion of the neonatologists, who “know better”. Thus, when parents offer neonatologists broad discretion to make a decision regarding resuscitation or treatment, the degree of neonatologists’ uncertainty remains high. Moreover, parents’ concerns may underlie their hesitancy towards neonatologists, which are expressed through nonverbal communication. For instance, as one participant noted, When parents are critical, sceptical and distrustful towards me and I can see doubt in their eyes, then I feel psychologically stressed, and I try to inform them properly. I want both of them to be aware, to be part of the decision that must be made and share the load, the moral burden, the biomoral burden of the responsibility (P13).
In summary, parents may cause neonatologists to feel constraint distress. On the other hand, parents may be supportive of the neonatologist’s decision and thus mitigate their uncertainty distress.