Seventeen interviews were conducted in the framework of the study, focusing on the parents’ moral experiences due to their involvement in distressing aspects of having an infant in the NICU. Below, we present the results that emerged from our interview data analysis to answer our research questions related to the phenomenon of parent moral distress in the NICU context. The below presented themes and subthemes are the findings retrieved from the interview data analysis and might serve as a starting point for further theoretical and empirical research on the topic parent moral distress in the neonatal clinical context. The themes and sub-themes presented below are regarding parents attitude towards beneficent medical paternalism, reasons behind parent moral stress, moral residue, and the concept moral schisma. The most relevant categories of variables associated with parent moral distress were a) physician-related (various factors), b) parent-related, c) parent’s context (family or broader social)-related, and d) NICU environment-related.
We identified a number of factors that are involved in parent moral distress in the NICU context. The distinction between parent moral distress and parent moral schisma, and the relational account of parent moral distress might be regarded as overarching themes that emerged from the data analysis, which might contribute to moving forward the discussion surrounding the topic of interest in this study.
We present a variety of interview quotes to illustrate different themes and subthemes that reflect different dimensions of the phenomenon of interest.
Some participants declared (more or less intensely) their concerns about whether the right whole care plan was recommended or provided, with other participants expressing their concerns about only a single medical intervention (diagnostic such as CT scan or therapeutic such as blood transfusion). Furthermore, moral distress in the context of neonate intensive care may be related to the NICU environment. Moreover, participants were in denial about the withdrawal of their neonates’ life-sustaining treatment (labelled by neonatologists as futile). Last, in cases of physicians’ uncertainties or inability to make clear medical decisions, parents were at loss while being faced with inextricable dilemmas which caused them to experience a strong internal conflict (Table 2).
Table 2
Situations involving parent moral distress or schisma
Morally stressful situation
|
Number of participants
|
Participants
|
Parent concerns about the whole care plan
|
6
|
P2, P3, P7, P10, P11, P12
|
Parent concerns about only a single diagnostic procedure or therapeutic intervention
|
4
|
P1, P2, P6, P9
|
Moral stressors related to the NICU environment
|
6
|
P5, P9, P10, P12, P14, P17
|
Medical futility
|
2
|
P14, P15
|
Medical uncertainties
|
3
|
P4, P8, P16
|
Inextricable (or perceived as inextricable) moral dilemmas
|
3
|
P4, P9, P13
|
We have identified a number of reasons behind parent moral stress. The most relevant categories of variables associated with parent moral distress were a) physician-related (various factors), b) parent-related, c) parent’s context (family or broader social)-related, and d) NICU environment-related. Furthermore, moral schisma was emerged as a distinct concept. Moreover, a mild moral residue has been identified among participants in this study. In addition, the findings of this study further confirm the relational account of parent moral distress.
In the case of parents with concerns about whether the right medical care plan or intervention was recommended or provided, disagreements between parents and physicians were due to discrepancies in knowledge and expectations. Nevertheless, in the case of physicians who negotiate their judgment that conditions of medical futility are met, disagreements between parents and physicians were due to discrepancies in values and beliefs. Note that in most cases of parents with concerns about only a single medical intervention, they did not share their disagreements with their infant’s health providers. These finding are in line with the currently available literature [4] as presented below in the Discussion section.
The parents’ difficulty to determine what the infant’s best interest is, made them give their consent despite the concerns they have about whether the right treatment was recommended (or provided) or despite their involvement in situations that are perceived as extremely morally questionable.
Parents’ tolerant attitude towards beneficent medical paternalism
Beneficent paternalism (soft)
The vast majority of participants reported that the physicians made decisions for their infants based on “I know what is best for your baby”. In other words, they described beneficent medical paternalism that discounts the so-called “parental discretion zone”.
Physicians’ firm conviction about the course of action to be taken (despite the uncertainty in the context of neonatology) caused parents to remain voiceless in the face of the severity of the situation. In reality, neonatologists had a paternalistic attitude, with paternalism being conceived as soft paternalism. Note moreover, that all the participants (in the exception of those being in denial of medical futility) showed a tolerant attitude towards the physicians’ paternalistic behavior.
The participant P2 expressed her strong concerns as to whether intubation should be performed on her infant. She said,
The neonatologists never asked for my consent to proceed with intubating my baby. He just firmly informed me that my baby was about to be intubated…then I stopped talking. The baby was under their responsibility, they were in charge of her. So he took her and proceeded with intubation just like that no further questions asked.
In the same vein the participant P9 said,
At some point when they had a blood transfusion I think it’s called, I was really scared they might infect my baby. They totally ignored my concerns then. They just informed me that due to the child developing severe anemia they had to proceed with the blood transfusion. So I was forced not to say anything, I just accepted the situation.
Furthermore, the participant P9 said,
They informed us every day…there were not any points where we disagreed with the doctors but equally they never asked for our opinion or consent. They did what they considered was the right thing to do.
Indirect coercion: leaving parents with no choice
Some physicians provided adequate information in order to convince parents to accept the recommended medical intervention and believe in its appropriateness. However, parents who were not persuaded were left with no choice. Physicians made parents responsible for their infant’s life or health. They adopted a quasi-coercive attitude as a last resort in order to save the infant’s life put under imminent risk. The physicians gave a presentation of the crude reality to the ignorant, inexpert and inexperienced parents. If the goal of obtaining parent’s persuasion was unattainable, physicians narrowed down the parents’ options and made them look at the available data to guide their choice in the current circumstances. They left parents with no or little choice. Physicians put the parents’ (who lack medical knowledge) in front of a life-threatening dilemma: “give your consent or the baby will die”. This can be regarded as an ethically justifiable (soft) paternalism in deviation from the specific consent rule. The pressure that arose from the particular circumstances (as presented by the physicians) created a sense of depression that compelled the parents to give their “consent” in terms of just saying an OK! while having a lot of reservations.
The participant P2 said,
He took me to his office. There he started explaining his point of view, why it was necessary to proceed in that way. And at the end he said pretty firmly that if the baby died it would have been my fault and that I should not ask them why. That was it! There is nothing else he could do he said. His words put me in a very difficult position and I remained silent. How could a mother respond to such a statement? My heart was hurting when I agreed to it and this is a moment I will never forget. It was a proper trauma for me, proper trauma. I don’t think I have taken a more important decision in my life. The burden of this decision affected me mentally. I could not cope for a long time.
In the same vein, the participant P3 said,
The neontologists kept saying: “What are you talking about madam? We can’t do this. Your baby is in danger. He might get severe apnea, with oxygen stop flowing into his heart and brain. If this happens, what baby are you expecting to get back? And then you will blame us for this”. What could be a mother’s response to that? I panicked and it felt like I had to consent. Given the doctors were telling that we had to do it & we had no other option, so yes I gave my consent.
Providing detailed information while communicating effectively induced almost all the participants to come around and leave behind their concerns about or objections to the appropriateness of a medical treatment or a medical decision made for their infant. In situations where for parents there was no escaping from making a difficult healthcare decision for their infants, physicians who attempted to achieve an effective communication and provision of information to parents finally persuaded them to give their autonomous informed consent
The participant P3 said,
Yes I disagreed. Indeed I disagreed. I disagreed about everything I described to you. Nevertheless I was convinced.
In the same vein, the participant P1 said,
They were adamant. They took responsibility for everything. They had their way of convincing you.
Ultimately, parents showed respect for physicians’ knowledge and professional experience
The participants’ thought that physicians “know better” than themselves was always at the back of their mind. Our interview data analysis showed that at the back of their minds, all of the participants doubtless realized that perhaps they may be wrong and that the diagnostic or therapeutic medical interventions that the physicians believe would improve the infant’s outcome may be the right action to be taken against the illness of their babies. While parents expressed their concerns as to whether the medical intervention recommended or provided to their infant is the appropriate, they felt they could not bear the full responsibility for denying it to the very end. It is to be highlighted that while many participants had moral concerns about whether the treatment provided is the appropriate, none of the participants requested the premature discharge of their infant being hospitalized in the NICU. None of the participants dared to take on such a responsibility for their babies.
The interview analysis allowed us to understand that participants were aware of their ignorance and inexperience in the field of neonatology. In this perspective, most participants who raised internal concerns about whether the treatment recommended or provided was the appropriate for their infant, they did not share their concerns or expressed their concerns in a mild way. All the participants who had concerns about whether the treatment recommended or provided was the appropriate, they finally came around and said an OK.
The participants P3 and P10 stubbornly opposed the physician’s views. While physicians strongly recommended their infants to get intubated, the participants stubbornly refused this medical intervention for their infant. However, they finally came around and said an OK.
The participant P10 said,
Again she was put in ICU [intubated] because she had hypoxia they told me. I was not in agreement with that approach. Of course I don’t consider myself a doctor hence I could not say anything further. I didn’t know how it would perceived. Every time I expressed my opinion I was told that they knew better and that they would do the best they could for my child. Obviously I didn’t share that view, I disagreed but I could not do something about it. This was indeed their responsibility & they were qualified to do this. I could not take such responsibility for my own child.
Furthermore, while the participant P1 had trust in physicians and had no concerns about the whole care plan, she had strong concerns (internal rather than shared and expressed) about performing a CT scan on her infant because of the radiation risk associated with CT scan. However, she finally said an OK. She said,
I only disagreed with them having to put the child through a CT scan. Can you imagine they did two CT scans to my child. I was extremely frustrated and ready to kick off. In the end I could not do anything to change this. They were adamant to proceed. In the end they put my child through MRIs, CT scans anything they wanted. Whatever they deemed that had to be done. Surely I am not a doctor… I did trust them. They took control so if something had to be done I went along with this. I had to put aside all my doubts and concerns and let them do what they had to.
In the same vein the participant P9 was stubbornly opposed to administering a blood transfusion to her infant because of the risk for transfusion-transmitted infections. However, she finally said an OK. In the words of the participant,
…I was forced not to say anything and keep my thoughts to myself.
The participant P12 who is a General Practitioner, initially expressed her concerns intensively. However, she finally came around. As a physician she could understand that the context of neonatal intensive care is a context of inherent uncertainty, where great experience is necessary to achieve a reliable decision-making process. She said,
I insisted that they need to operate his intestine, given a part was not working properly…however they would not change their protocol. This was very upsetting for me you see…I was really upset. I appreciated that they had seen a lot of similar cases and hence they were trying to re-assure me that everything would get back to normal but I kept feeling that something was not right. I must admit that at numerous times I thought that the treatment plan was not the right one. In the end, I discussed it with my husband and we sought the opinion of another colleague of mine from overseas…he also didn’t provide a straight view and sat on the fence…I was still unconvinced…
Physician-related factors that can play a crucial role as reason behind parent moral distress
In the present study, the data analysis revealed a number of factors which can serve as resources of parent moral distress.
Physician uncertainty about the right action to be taken
A situation indicating heightened medical uncertainty can serve as an antecedent to moral distress or schisma. The participant P16 emphasized her moral strain that arose from physicians’ uncertainty as to whether the use of CPAP would be effective in managing respiratory failure in her infant or an intubation should be performed. She said,
Even the doctors didn’t come across confident and that made me even more anxious as I felt that they were not sure either about what had to be done.
In the case of the participant P13 the physicians expressed uncertainty as to whether her infant (perceived by mistake as severely ill) might or should be transferred to a remote though much more specialized setting,
In the case of the participant P8 medical uncertainties escalated into disagreement between the physicians. In the words of the participant,
I was not impressed with the fact that at some point the neonatologists had a disagreement amongst them as to whether they should put a central intravenous catheter to the baby. And it was at that point that I lost my mind and doubted everything.
In the case of the participant P9 the physicians were at a loss as to which course of treatment should be followed.
Physicians’ professional commitment and effort to optimizing the infant’s outcome
Almost all of the participants recognized the physician fatigue and the NICU environment as a hard and demanding (physically and psychologically) workplace. The vast majority of the participants recognized the NICU physicians’ keenness to go above and beyond the call of duty and their fervent desire to optimize the infant’s outcome. Furthermore, the vast majority of the participants recognized that the NICU physicians felt like wanting to provide adequate information and effectively communicate with the parents. Parent’s strong reservations about physicians’ professional commitment have been reported as factors that can be driving forces behind moral distress. According to participants, professional – operational way of behaving adopted by physicians who did not behave in an empathic way and did not do their best for optimizing the infant’s outcomes could serve as a significant facilitator of moral distress (broadly understood). Physicians who act or behave as real healers (doing their utmost for optimizing the infant’s outcome) rather than operators fulfilling their duties under the law gained the parents’ trust.
The participant P6 said,
Afterwards they asked for my consent to proceed with a blood transfusion if they had to. They explained to me that they would only proceed if it was absolutely necessary. They re-assured me that the blood to be used was checked and that I should not be worried for such things. However, I could sense that they genuinely cared for my child and that they were doing their best in the circumstances and this was helping me place more trust in them and keep a positive outlook about what they were doing.
In the same vein the participant P3 said,
...they kept informed all the time. It was obvious they were not just completing a task in a mechanic like fashion, they really put a lot of effort and energy into it. I could sense their effort to look after my baby and I felt somehow relived. I kept telling myself they were doing the right thing…they don’t just do their job. Generally speaking, I felt that the communication with the doctors was good and I could sense they deeply cared. They are just not doing something for the shake of doing it right?
The image of physicians as perceived by parents can serve as barrier or facilitator of establishing a trusting relationship parents and physicians. This was a recurrent finding throughout the participants’ narratives.
The participant P8 said,
… we could see how they were running around sweating excessively….
The participant P5 observed the physicians’ effort to optimize the infant’s outcome crossing their face. In the words of the participant,
I could see it in their eyes and also in the way they behaved throughout the process that they were really trying.
In the same vein the participant P3 declared,
… I could sense their effort to look after my baby and I felt somehow relieved. I kept telling myself they were doing the right thing…they don’t just do their job. Generally speaking, I felt that the communication with the doctors was good and I could sense they deeply cared. They are just not doing something for the shake of doing right?
Two participants complained that the physician behavior gave them the impression that their severely ill infants have already inconvenienced the NICU because of their poor prognosis. As parents always strive to make the best decision for their infants, this behavior caused parents to feel severe psychological distress and moral discomfort.
The participant P13 stated,
The fact that was difficult for me to comprehend in that unit was that I felt that they somehow wanted to distance themselves from such a case. Such a case seemed to be a burden with a really bad prognosis.
In the same vein the participant P15 declared,
They seemed they wanted to get done with this baby and that this was a burden to the unit. I didn’t feel that way!
Parents’ suspicion of healthcare providers
A participant worried whether the (overwhelmed at work) physician on duty put the infant’s life or health at further risk so as to reduce the burden of his workload.
The participant P11 said,
I told them that I didn’t want them to intubate him if this was possible. They set him up and left him. However overnight his situation deteriorated and they ended up intubating him. I don’t really know if that was the case or they just wanted to be sure hence why they intubated him. After all it was a hard shift…
Previous medical malpractice
In the case of the participant P13 misdiagnosis undermined her trust in physicians despite the effort of the physicians to make the right diagnosis. Furthermore, the case of the participant P13 suggests that parents who perceived physicians as having successfully dealt a challenging situation with their infant are likely to put their trust in the physicians. She declared,
That’s right..there was no heart tumor…I was devastated..i completely lost all my trust for the doctors and said to myself that was it. At the same time however I really relied on the doctors of this unit and decided that whatever they say I would go with..they relieved me from a big concern. So I said to them take her and do whatever you think is right. Afterall you know better.
Discrepancy between physicians’ opinions on the course of action to be taken
From our interview data analysis emerged that the trust the patients placed on NICU physicians was greatly dependent on the agreement or discrepancy between the physicians’ opinions on the course of action to be taken against the illness of the infant in the NICU.
The participant P3 said,
I disagreed of course. I disagreed with everything I described to you. Nevertheless and after all of them told me the exact same thing I was convinced. Then I also consulted with my pediatrician who told me “Sofia sounds like this is what needs to happen”.
The discrepancy between the opinions of infant’s attending neonatologists can be a major antecedent to parent moral distress. The difference of opinions between physicians gives rise to parent concerns about whether it is right to provide a particular treatment and causes parents to feel traumatized.
The participant P8 said,
I was not impressed with the fact that at some point the neonatologists had a disagreement amongst them as to whether they should put a central intravenous catheter to the baby. And it was at that point that I lost my mind and doubted everything. My husband was really upset… Thankfully both my husband and my best friend were there to support me emotionally and psychologically. I cant forget the pressure I was under in there from feeling unsure about my baby’s situation, especially as the neonatologists kept disagreeing amongst them regarding best course of action.
In the same vein, the participant P9 said,
One shift supervisor kept telling me we should wait. Another one during his shift insisted that we needed to proceed with a more aggressive treatment protocol. I felt that even the doctors themselves were not 100% certain about this.
Unmet parents’ communication needs can serve as an antecedent to moral distress or schisma
Participants were seeking not only effective, but also empathetic communication between health providers and themselves in the NICU context. They had considerable communication needs, which however, might not be met by the NICU staff.
The following interview quote illustrates the parents’ needs for better communication with NICU staff. The participant P8 said,
But the one thing that really stressed me out & made me feel under a lot of pressure was the limited information that I was provided with. We felt that we should have been informed about the situation with sufficient detail and with respect towards our concerns and pain that we had been going through. We could see how tired they would get but despite this we felt that the communication with parents/guardians could be improved.
The following interview quote illustrates the importance of information and good communication between parents and NICU staff. The participant P3 said,
They informed me again and again. I totally understood that they didn’t perform their job as cold blooded professionals..they really tried and fought for it.
Importantly, the participant P2 said,
I am just flagging that the doctors you know have the knowledge and experience and they decide based on this. They approach situations in a more sensible manner. Parents on the other side rely on their instincts, the love they feel for their children. And this is what the physicians need to appreciate and discuss with parents. Invest some time, with empathy and warmth. They need to invest more time in building the communication with the parents/guardians. It is extremely important. I appreciate that their job is tough but equally the parents have their own concerns and someone needs to lean over and listen to them. Even if they sound silly at first glance.
Furthermore, the participant P13 said,
I really don’t want to judge them …it’s a tough job and you work under a lot of pressure…my point is though that some doctors do seem to take into account & acknowledge the concerns of the parents, whilst some others behave like cold blooded professionals.
Moreover, the participant P11 said,
I believe that the main reason that led to the uncertainty and confusion was the lack of clear communication and connection with the medical team. Which I think has made the whole situation much harder and this was very upsetting for us.
The participant P12 (a physician-General Practitioner) was of the opinion that neonatologists and parents should communicate more effectively and utilize a shared decision making approach to determine the care plan. However, she did not emphasized that the factors contributing to ineffective communication may include poor physician communication skills. She emphasized on the paternalistic attitude of the physicians rather than on their poor communication skills. She emphasized,
You know what is not really that great is that here in Greece we work more paternalistically…whatever we feel is right…we are the experts and we know better than anyone else what is good for the child and we just inform the parents or the guardians. We don’t really co-decide with them. So in this context I feel that getting the communication right is a hard task to balance … and this was a difficult aspect for me to comprehend. One thing to mention with my emotional hat on is that I was mentally drained as a result of this average or even probably bad communication that was established with the team. Now….
Organizational and structural aspects of NICU environment
Complexities of the highly technologized NICU context can cause parents to feel they cannot do what they believe to be the right thing during their infant’s illness and therefore can predispose them to experience moral distress.
Preventing mothers from caressing and touch across the body of their baby.
Mothers know that emotional engagement, affective touch and caressing their infants is one of the most important means of speeding up their early development. While emphasizing that the skin-to-skin contact between baby and parent can be beneficial for both, participants in this study placed considerable emphasis on the benefits it offers to improve their infant’s outcomes rather than on the benefits it offers to reduce their own feelings of psychological distress.
The participant P6 said,
I just wanted to stroke her, use my fingertips across my neonate to offer her maternal love, affection & warmth and these were things that surely would help the baby develop.
In the same vein, the participant P5 said,
I was only able to observe my baby for a couple of minutes and then had to go, although it is well known that contact with the mother is really helpful for the baby. Isn’t that right? Well I was not able to give to my baby this so much needed contact.
Preventing the mother from having a skin-to-skin contact with her infant was an important reason why the participant P10 had a negative attitude towards performing reintubation on her infant, despite the physicians’ dissenting opinion and the clear medical evidence to the contrary.
Preventing mothers from providing milk for their babies
Mothers know that providing their babies with their own breast milk is beneficial for their babies. However, while this is beneficial for both, participants in this study placed considerable emphasis on the benefits it offers to improve their infant’s outcomes rather than on the benefits it offers to reduce their own feelings of psychological distress.
Two participants complained that while they were pumping their milk for their infants, the NICU staff repeatedly rejected it. As they regarded the rejection of their milk by the NICU staff as not only medically but also morally wrong, they felt intense moral discomfort which, however, did not spark a disagreement or conflict between mothers and NICU staff.
The participant P10 said,
I was told that my milk was not helping my baby.
In the same vein, the participant P14 emphasized,
How is it possible for formula to be better for my baby than my expressed breast milk? I thought that breast milk would help my baby more than formula.
The participant P17 observed decrease in her milk production because of emotional distress due to the traumatic experience of having her infant in the NICU. Then, she offered to send in the NICU milk produced from her friend who was breastfeeding. However, the NICU staff rejected it and her discomfort escalated into disagreement between her and the NICU staff. She said,
They didn’t accept it and at that point I disagreed with them and I was upset again…
Shortages of manpower and available medical devices necessary in NICU
Lack of resilience for dealing with the imperfection of the health care system may lead to anger at the injustice of the circumstances and can play a crucial role as a reason behind parental moral distress. Health providers working in NICUs are working in a context of scarcity in (human or material) resources. This situation perceived by parents as morally stressful. The participant P12 who is a clinician (GP) emphasized her moral strain rose from the shortage of both human and material resources (such as an available infusion pump). She tended to attribute the reasons behind the bad communication between parents and physicians as well as the failure to engage in ethically optimal shared decision making to shortages of human resources and physicians practicing paternalistic mindset.
In the same vein, the participant P8 said,
We appreciated that the ICU was understaffed, as the medical team was constantly working really hard. And they had some pretty touch medical cases to deal with.
The image of a long-suffering baby
From the interview data analysis emerged that witnessing the baby’s suffering may play a role as a reason behind parent moral distress. The image of a sick baby with tubes inserted in their body and especially in the mouth can be morally stressful to parents.
The participant P3 said,
At the end we agreed to him being re-intubated. There was nothing that could be done. There we were again with all these tubes down him and with the tube through his mouth.
In a similar vein the participant P11 emphasized,
They insisted that this was the right treatment for my child but the only thing I could see was tubes coming out from everywhere.
The same holds for the image of a baby suffering from uncomfortable sensations due to needles or catheters getting across to a blood vessel or being introduced elsewhere in their body.
The participant P9 said,
Yes I disagreed openly when I saw the midwives poking him to try and get a vein or every time they changed his catheter. I could not understand why they had to do this every 3 to 4 days.
Internal factors of parents as resources of parent moral distress
Spiritual / existential factors
From our data analysis emerged spiritual and/or existential factors which can serve as resources of parent moral distress. From our data analysis emerged spiritual or existential reasons behind why parent want “too much”. The neonates of the participants P14 και P15 were described as having a little chance of recovery or extremely poor prognosis (in the case of P15) and were expected to live with severe neurological disorders and be medically dependent for their short lifetime, in the best circumstances. Neonatologists considered the continued provision of medical care or treatment to the babies to be futile and depriving other babies (having better prognosis) of the opportunity to be admitted in the NICU and receive lifesaving care or treatment. They expressed their moral judgments of the neonates’ quality of life very clearly. The mothers however strongly opposed withdrawal of life-sustaining treatment and refused to give their consent. They refused to regard the care of their baby as futile. Parents requested ongoing life-sustaining treatment whereas the neonatologists recommended redirection of the care to comfort care for the infant. Importantly, parents in denial about what neonatologists labelled as medical futility had interesting reasons to refuse to admit the truth or reality of such an unpleasant medical decision. The participants’ concerns were revolving around their own personal core values and beliefs.
The participant P14 was intensely annoyed and deeply irritated by the fact that the neonatologists adopted very cynical attitude while communicating their moral judgments to her. In the participants’ words,
If it was God’s will for him to have some sort of disability or any other complication, I was ready to face this with the support of my partner. But this lack of empathy & arrogance that came across every time they informed me of my child’s situation completely enraged me and stressed me out…they just carried on with their jobs as normal without giving a damn that they were talking about a human being.
While the participant P15 tried to justify the neonatologists’ moral judgments, she has strongly defended her need to show a lot of love and affection to her baby until the baby’s last breath. Moreover, she defended her need to seize what God or Nature sent to her by engaging her in such an adventure. It is noteworthy the following long quote from her interview:
They gave me the impression that they wanted to get done with this baby and that it was a burden to the unit. Ok I can appreciate this ... Every day they kept telling me that we are putting the baby through unnecessary pain and that I don’t consent to make this stop, that he is just mechanically supported and even if he was to recover, I would take him back home with many complications, creating a burden to me and my family. But I didn’t feel that way. This was a live human being, and if it was meant to be that way then this baby came to our lives to teach us a lot of things, even if it meant that we would lose him early. He was borne with a heart that was beeping and life within him. I could not let him go and take such a decision. And to be honest I have not regretted that decision. Me and my husband both agree that despite what we have been through we have no regrets for taking that decision as it made us have more empathy and appreciation towards families with disable children. Unfortunately, after just one month we lost him. We knew it was coming ... but at least I had the opportunity to offer him what I could. A home, a mum, a hug from dad. We were at home preparing ourselves about what was to happen & that we had to say goodbye but at least we would do this in a way that we felt itwas right and in our own environment.
Please, note that while the participant P5 held opposing attitude toward removing life-sustaining treatment from her baby, her objection was oscillating. Her decision to take home a baby with severe neurological disorders was not absolutely unwavering. She said,
I won’t forget one day, I was in the unit & the neontologist told me that my child will make it however she was not aware of what disabilities he may end up having once at home. Maybe I said to myself maybe should I wish that the baby did not survive? You see I got to the point to consider this…having a child that could not see, hear, one that would be both physically and mentally disabled, unable to move.
Parents’ self-directed negative emotions
The participant P7 placed considerable emphasis on her negative self-directed emotion (guilt).
I felt guilty as I thought this could be my mistake. I was not very careful and gave birth prematurely. Afterall my immediate family environment had a lot to do with placing that guilt on me..even my husband was not very supportive. I asked one of the neognologists who was working that shift how do I know that they have given me the full, true picture.
After removal of endotracheal tube, the infant of the participant P17 did not gain weight. The baby was not tolerating enteral feeding even when food was carrying through a nasogastric tube. The participant P17 also reported feeling guilt and complained,
Due to being so upset, my milk supply reduced and I could not breastfeed his twin sister. I felt so guilty but thankfully my mother and partner were very supportive.
Factors related to parent decision-making process
a) Dealing with treatment success rates
From our interview data analysis emerged that disclosing to parents with an infant in the NICU specific information about the treatment success rates, this may serve as a resource of parent moral distress. Participants reported that parents are not interested in statistics but just serving the best interest of their infant, on the understanding that every single case is a different case.
The interview quote of the participant P9 presented below is representative. She said,
When it comes to your child percentages are irrelevant ... what matters is just for your child to get well and nothing else.
b) Assuming perceived unbearable responsibility for the baby
Participants would prefer to feel that the physicians who are responsible for the care of their infants were much more sure of what they were believing to be the right course of action for curing the infants’ illness. Participants would rather leave the responsibility of making a healthcare decision for their infant in the hands of the attending physicians and allow them have control, authority and responsibility over their infant’s healthcare.
Parents do not bear the weight of responsibility in making difficult decisions. From our data analysis it was emerged that while parents with infants in the NICU claim for their greater involvement in decision making, participants being faced with difficult dilemmas had better to avoid taking full responsibility.
The interview quotes of the participant P3 and P9 presented below are representative.
The participant P9 said,
I was really upset that I had to make that choice for my child
In the same vein the participant P3 said,
Then I had a go at the doctors who kept asking over and over again, probably because they wanted to avoid taking full responsibility for the outcome.
c) Parents’ reservations and fears of making a particular decision
The participant P4 came across a dilemma perceived as extremely difficult because of her unwillingness to come to terms with truth. She described the fear of knowing the truth (truth phobia) by doing a karyotype genetic test and said,
I have been deeply traumatized as a result… I will never be able to get over this .
Moral schisma: a conceptually distinct concept
Parents may find themselves in inescapable situations which demand moral decisions despite the fact that every possible option is equally likely to result in adverse effects to the ill infant. It is true that there are really inextricable dilemmas in situations where the expected good and bad outcomes are equally likely.
Being faced with inextricable (according to objective evidence) dilemmas
a) Medically inextricable dilemmas
Participants were faced with an extremely hard-to-solve dilemma regarded as inextricable even from a medical evidence-based perspective. As the available evidence was completely i inconclusive, the parents were at a loss of what would be better choice to serve the infant’s best interest in the particular situation. The goal of making a deliberate and well-balanced decision was perceived to be unattainable.
In the case of the participant P9 the parents had to come across such a moral dilemma. They had to choice between opting to continue along the path of the tried and tested treatment already provided and opting for a recommended medical novelty which however involved greater risks. The medical novelty was expected to further improve the patient outcomes (infant’s lung function). While the decision making was a practically inescapable process, it was extremely difficult (almost impossible) for the parents to decide which of the two options was the better for their baby. The participant P9 said,
To apply a therapy protocol which carried a high risk of complications? They could not make such decision and eventually they said “please do whatever is best for our baby. During that time I was under a lot of stress and was feeling pretty run down so I looked at them to decide what to do based on their experience..what would you do if this was your child? But they would not answer that question. Each doctor had a very different opinion on the matter and even after consulting with other doctors they also responded that each case can be different”.. “the more I asked the more I confused myself”.
b) Dilemmas that parents arguably perceive to be inextricable
Physicians and parents view the same dilemma from different perspectives. Physicians’ decisions are based on their knowledge and experience while parents decide and act on their emotions and instinct. As parents want to do what is best for their infants, even a little success or failure rate counts a lot to them. While there was no escaping the need to make decision on an objectively hard-to-solve dilemma which, however, parents (not physicians) perceived to be inextricable, participants stopped deliberating and just said an OK. Note, however, that, this was not a genuine decision. In this perspective, they made their decision based on a mechanical (formal, statistical) consideration of relevant data parameters and variables. Their decision was based on what they perceived that would be the average person’s decision in the exact same circumstances. They chose the option that seemed more likely to increase the short-term rather than the long-term risk aversion. The patients’ internal tug of war remained, however.
In the case of the participant P13 there was agreement between physicians about the severity of the infant’s condition (“hopeless” patient with very poor prognosis). In the words of the participant,
One supervisor said: “Right guys, we need to try really hard here and whatever is to happen will happen…after all, the child’s prognosis is not that good so I don’t expect that he will make it ... so lets stop making it harder for him for no reason”. There was another one who agreed and said: “ Guys there is no hope here, let us do what we can do here and let’s say we have tried and we should be ok”.
However, they left open the possibility that the infant might be successfully treated if an expensive critical care transportation to a specialized medical facility would be carried out. It was a highly morally stressful situation, arguably perceived as inextricable situation in the particular circumstances. She emphasized,
What a turmoil we went through...panic is probably the best description of how we felt along with despair. So who can tell us what is best for our child? They didn’t know either …I cant judge them to be honest ... it is possible that they had not come across this situation before. After shedding a lot of tears and thinking it through with my husband we decided to transfer the child under our responsibility to the closest specialist center.
Furthermore, the participant P3, was coming across a dilemma which however she perceived to be “inextricable” despite the fact that all the physicians insisted on performing intubation on the ground that the situation left them no option but to perform it. She emphasized,
To allow them to re-intubate him bearing in mind all the risks involved or not? But if he ended up dying during an apnea episode…pure madness…madness… what is ultimately the right thing for the baby? You are not in a position to know really.
Furthermore, it is noteworthy that the participant P3 commented her secondary experience of very difficult dilemmas between two equally risky (and beneficial) choices for other infants in the NICU. She described and commented in a best way the experience of a parent who was caught in and had to cope with a truly intractable situation. She put it best in saying,
What do you do in this situation? I don’t know..i don’t really know how these people take such a decision? Do they rely on their instinct, do they pray or do they meditate? I really don’t know…overly complicated situation. I wish no one finds themselves in that situation…these poor parents were discussing the options with the doctors over and over again.
c) Dilemmas perceived to be inextricable because of internal factors of parents
The participant P4 perceived a dilemma (presented above) as inextricable because of her own perceptions and internal constrains.
The participant oscillated between letting herself know the truth and turning her ears away from the truth because of her fears, which, in our opinion were reasonable under the particular circumstances. The infant was not expected to be benefited substantially from the result of the karyotype genetic test, which however, might be extremely stressful for the parent.
The important role of family pediatricians or a friend who is a physician
In the case of two participants in our study, their concerns about whether the most appropriate treatment for their infant had been selected (by the NICU physicians) was profoundly shaped by the opinion of the family pediatrician. Parents need to feel they can trust their pediatrician. Parents who have to deal with a dilemma regarding their infant’s treatment ask their family pediatricians (or other physicians who are acquainted with them) for medical advice.
The participant P3 said,
My view was that we should really try using some sort of medication and oxygen so that the child didn’t have to be re-intubated. I was in constant communication with my pediatrician over the phone who said that they should try a bit more before proceeding with re-intubation but he was not able to see the state of my baby. The neontologists there kept saying :”what are you talking about madam, this is not possible, your baby is in danger”.
In the same vein, the participant P2 emphasized,
On our way to the hospital, in the ambulance I was talking to the pediatrician who told me that intubation can lead to complications and therefore they don’t proceed unless it is absolutely necessary. And you know there are so many times in my life it’s like time goes back to that moment and think that maybe he was right, as the child is now 2 and has hoarse voice.
The parent’s immediate environment
The role of relatives’ or friends’ previous experiences
Parents’ concerns about whether the most appropriate treatment for their infant was selected can be profoundly shaped by their own personal previous experiences or the previous experiences of a close family member, or even a friendly person.
The participant P2 said,
How am I expected to know whether the blood used in the transfusion has been checked or not, I asked him? What are you talking about madam, he responded. I just had a bad experience I said as my mum was infected with hepatitis b following a blood transfusion after an operation.
Furthermore, the participant P11 said,
To be honest I didn’t want the baby to be intubated at all. It was not that I had a particular concern, just I had heard from a relative that their baby didn’t make it.
The attitude and role of the husband (neonate’s father)
Participants reported that during the infant’s hospitalization the role of the partner was to calm her down, being cool-headed and clear headed but also supportive. In the dilemmas raised by the mothers and whilst the doctors provided no choice solutions, fathers remained calm and they were also seen to calm down the distressed mothers and to convince them to follow the doctor’ s advice. When faced with difficult dilemmas, husbands lived through the agony of their wives with the later always having the leading role. Fathers tended to react more rationally rather than emotionally in contrast to the mothers. The following quotations illustrate the findings.
The participant P2 reported that her husband told her,
Please…stop being stupid, the child is in their hands…
In a similar vein, the participant P1 said,
…my husband was trying to calm me down…
Note that in morally extremely questionable situations that leave uncertainty inextricable, the husbands experienced distress and anguish together with their wives.
The participant P13 said,
The responsibility and the accountability for that decision was on me and Kostis [my husband] … and yes to be honest following hours of thinking it through & crying my eyes out we decided with Kostis to take her to another unit.
In the same vein, the participant P3 said,
I don’t know ..what we have experienced felt like a very hard puzzle that myself and my husband had to get to the bottom of.
In a similar vein, the participant P10 said,
…..Both me and my husband were totally disappointed.
The role of family and friends
The role of family and friends may be supportive or even predisposing factor to parent moral distress
The participant P8 said,
Thankfully, I received a lot of mental and emotional support at that point from my partner and my best friend.
Note, however, that the participant P7 said,
I was feeling guilty, thinking that I might have caused this by mistake. I didn’t take care and went into labor prematurely. My immediate family environment made me feel even more guilty about my actions around this … even my husband was not very supportive.
Mild moral residue
Parents’ tepid emotional reactions to morally distressing past events were emerged from our data analysis. Most participants felt a partly positive and partly negative reaction to the past event of their infant’s hospitalization in the NICU. Participants felt that their concerns about the rightness or wrongness of a decision with regard to the act that was taken during their infant’s hospitalization were lingering in their mind for a long time after the infant had been discharged from the NICU. Parents who came across moral distress during the period of their infant’s hospitalization may feel lingering mental
The participant P12 said,
At the back of my mind, I keep thinking that maybe we would not have these problems if there was an immediate treatment plan drawn for necrotic enterocolitis and we had started an appropriate nutrition plan such as enteric friendly diet.
In the same vein, the participant P10 emphasized,
If you ask for my view, I believe we could have avoided all these issues if we have been treated differently.
In a similar vein, the participant P13 complained,
Seriously I am not trying to put the blame onto the NICU staff, but I think valuable time was lost when they mistakenly diagnosed the heart tumor in the first place. That’s it from me.
The infant of the participant P8 had been reintubated despite the strong concerns she had. Then, the infant survived sepsis and finally got better and was discharged home. The participant said,
Now every time the child has high temperature I am worried it might be sepsis. This word has been stuck in my mind. I will never forget what we have been through.
Note, moreover, that our analysis revealed that participants demonstrated much more humility about health care providers’ abilities. Note, moreover, that while participants at the time of interview had still vivid memories of the event of infant’s hospitalization in the NICU as well as their reactions, their lingering moral distress was mild.
Last, it is noteworthy that all the participants who had concerns as to whether the appropriate treatment or medical intervention was recommended or performed during the infant’s hospitalization, in hindsight they would have approved these interventions despite the continuing existence of mild residual concerns at the back of their minds.