Article Review Moral Distress in the Resuscitation of Extremely Premature Infants

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• Published: 25 September 2021

Neonatologists' decision-making for resuscitation and non-resuscitation of extremely preterm infants: ethical principles, challenges, and strategies—a qualitative study

BMC Medical Ethics volume 22, Commodity number:129 (2021) Cite this article

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Abstract

Groundwork

Deciding whether to resuscitate extremely preterm infants (EPIs) is clinically and ethically problematic. The aim of the study was to sympathise neonatologists' clinical–ethical decision-making for resuscitation of EPIs.

Methods

Nosotros conducted a qualitative study in Belgium, following a constructivist business relationship of the Grounded Theory. We conducted 20 in-depth, face up-to-face, semi-structured interviews with neonatologists. Data analysis followed the qualitative analysis guide of Leuven.

Results

The main principles guiding participants' decision-making were EPIs' best interest and respect for parents' autonomy. Participants agreed that justice as resource allocation should not be considered in resuscitation decision-making. The principal ethical challenge for participants was dealing with the disharmonize between EPIs' all-time interest and respect for parents' autonomy. This disharmonize was most prominent when parents and clinicians disagreed about births within the gray zone (24–25 weeks). Participants' coping strategies included setting limits on extent of EPI care provided and rigidly following established guidelines. However, these strategies were not always feasible or successful. Although rare, these situations often led to long-lasting moral distress.

Conclusions

Participants' clinical–upstanding reasoning for resuscitation of EPIs can be mainly characterized every bit an endeavour to residue EPIs' best interest and respect for parents' autonomy. This approach could explain why neonatologists considered conflicts betwixt these principles equally their master ethical challenge and why lack of resolution increases the chance of moral distress. Therefore, more research is needed to improve understand moral distress in EPI resuscitation decisions.

Clinical Trial Registration: The study received upstanding approval from the ethics committee of UZ/KU Leuven (S62867). Confidentiality of personal information and anonymity was guaranteed in accord with the General Data Protection Regulation of 25 May 2018.

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Introduction

The Earth Health Organization (WHO) defines extremely preterm infants (EPIs) every bit infants born before 28 completed weeks of gestation compared to the twoscore weeks of a normal pregnancy [1]. EPIs typically need resuscitation at birth. Depending on the specific medical conditions, resuscitation tin consist of different interventions of increasing intensity, such every bit ventilation and oxygenation, chest compressions, and administration of epinephrine and/or volume expanders [2, three]. Nonetheless, deciding whether to resuscitate EPIs can be difficult. In a contempo meta-analysis, Myrhaug et al. reported survival rates in high-income countries as the following survival rates (mean 95% CI): seven.3% of all alive births at gestational historic period (GA) 22 weeks; 25.seven% at 23 weeks, 53.9% at 24 weeks, 74% at 25 weeks, around 80% at 26 weeks, and ninety% at 27 weeks [4]. Moreover, EPIs have an increased gamble of mild (east.g. behavioral disorders) to severe (e.g. neurosensory, motor, cognitive, and behavioral impairments) disability compared to term infants [5,half-dozen,7]. The risk of astringent impairments is 36.3% for EPIs born at 22 weeks, 22.ane% at 23 weeks, nineteen.ane% at 24 weeks, 14% at 25 weeks, and 4% at 27 weeks [four]. Finally, other factors other than the GA contribute determining the individual probability of survival with good outcomes, east.g. clinical conditions at nascency, administration of prenatal steroids, technological equipment and pharmaceuticals available at the infirmary, and the occurrence of postnatal events (e.1000. intracranial hemorrhage) [4, half-dozen, viii]. These figures are in the aforementioned range for Flanders where recently the mortality and neurocognitive morbidity was reported [9]. Hence, despite having good statistical data at a population level, information technology is difficult to determine the specific survival probability of each individual EPI and whether their quality of life will be good [10].

Clinical uncertainty nigh prognosis raises key ethical questions. In a systematic review of the ethical literature, we institute disagreements on whether GA is an appropriate benchmark for deciding whether to resuscitate, showing once once again that making EPI resuscitation decisions is difficult [xi]. Authors also suggested that EPIs' best interest and parents' autonomy should exist the main principles informing the decision-making [11]. All the same, the review's description is only theoretical. It does not shed calorie-free on whether neonatologists actually use these principles in existent do and, in case, how they utilise them to make EPI resuscitation decisions.

Empirical studies of neonatologists' perspectives nigh EPI resuscitation focused mainly on their attitudes, i.e. whether they would resuscitate EPIs at unlike GAs [12,13,14,15,16,17,18]. The majority of these studies employed quantitative methodologies. These offered a good overview of what neonatologists prefer regarding EPI resuscitation just produced little insight into how neonatologists brand these decisions and how they ethically legitimize their decisions. The few qualitative studies on the topic produced important insights on neonatologists' preferences in terms of counselling [19, twenty] and end of life decisions [21]. They too suggested that the main ethical neonatologists encounter chronicle to appropriate counselling, parental involvement, and dealing with clinical uncertainty [22,23,24,25]. However, many of these studies also included other healthcare professionals' and parents' views, making it difficult to discern the views of neonatologists [23,24,25,26]. Hence, a nuanced understanding of what ethical principles neonatologists remainder in real-world decision-making and how they bargain with ethical challenges is yet defective.

To address these gaps, we conducted a qualitative report in Belgium aimed at understanding neonatologists' clinical–ethical conclusion-making for resuscitation at birth of EPIs. More than specifically, we aimed at understanding what ethical principles neonatologists utilize, what ethical challenges they face, and how they utilize those principles to bargain with the challenges.

Methods

As nosotros were interested in how Belgian neonatologists utilise ethical principles in their clinical–ethical decision-making regarding EPI resuscitation, we used a qualitative design supported by the Grounded Theory approach [27, 28]. Nosotros followed the Consolidated Criteria for Reporting Qualitative Inquiry guidelines (COREQ) to report the results of the report [29].

Setting

Kingdom of belgium is divided in three independent regions: Flemish region (population: 6,629,143); Wallonia (population: 3,645,243); and Brussels (population: 1,218,255) [xxx]. There are currently 19 NICUs agile in Belgium employing 113 neonatologists. Flemish region has an official guideline that provides advice on when to resuscitate EPIs delineated by GA [31]: From 26 weeks EPIs should ever be resuscitated; under 24 weeks EPIs should not exist resuscitated unless information technology is the explicit wish of the parents and later they are well informed; between 24 and 25 weeks (i.e. the gray zone) the decision-making is individualized. The decision betwixt resuscitation and non-resuscitation is done case past instance, looking at all the relevant factors (non GA alone), through shared controlling between parents and healthcare providers. NICUs in Wallonia and Brussels have their own internal written or oral institutional recommendations. The majority of these latter NICUs guidelines, even so, utilize the same thresholds as those delineated in the Flemish guideline.

Recruitment

Participants were firstly recruited through the gatekeeper strategy [32]. The president of the Belgian Society of Neonatology invited members to participate in the study by sending them an data package containing a letter of invitation; an information brochure describing the study and the research team; an informed consent form; and a demographic questionnaire. Participants themselves were encouraged to invite other potentially interested colleagues (i.e. snowball method) [32].

Interested neonatologists returned the signed informed consent form and the completed questionnaire. The interviewer then contacted them to ask if they had study questions and to schedule an appointment.

Based on answers on the questionnaire we selected participants who (1) were practicing neonatologists in Belgium, (2) were involved in at least i controlling for resuscitation at nascence of EPIs, (three) were willing to participate, and (iv) were willing to do the interview in English.

Data drove

Air conditioning conducted 20 individual, semi-structured, contiguous interviews between September 2019 and October 2020. The interviewer is a white, 30-year-old, nulligravida, PhD student with a background in philosophy and bioethics. Interviews took identify at the participants' hospitals.

Nosotros developed the interview guide based on previous literature reviews and a pilot interview [11, 12]. Throughout the data collection flow, we farther refined the guide based on the preliminary results of the interviews completed to date. To sympathize what the main upstanding challenges are in real practise and how neonatologists deal with these challenges, nosotros asked participants to draw real past cases in which they had to determine whether to resuscitate an EPI at birth. We then asked in-depth questions on that specific case and decision-making (e.g. how did he/she decide to resuscitate? why? What were the main bug? What was parents' request? How did he/she discuss the example with parents?).

The interviews lasted on boilerplate ane hour (range 37–82 min) and were conducted at the participants' hospitals. The interviewer did non have field notes but all interviews were audiotaped and verbatim transcribed with the participants' consent. Data collection concluded at saturation.

Data analysis

Consistent with the Grounded Theory, data analysis and data collection occurred simultaneously and interactively. Interviews were analyzed following the Qualitative Analysis Guide of Leuven (QUAGOL) [33, 34]. The QUAGOL is divided into two parts; each office is further subdivided into five steps.

In the first part, we coded the transcribed interviews using pen and newspaper. We analyzed interviews using the following five steps. (1) Interviews were read repeatedly to familiarize ourselves with the material. (2) For each interview, we developed a narrative scheme containing the key letters of the interview, using participants' words. (3) We so developed individual conceptual schemes in which nosotros highlighted the chief themes emerging from each interview. This was the first step in which the concrete "raw data" were analyzed to extract qualitative concepts describing those information in more conceptual terms. (iv) Nosotros re-read the interviews with their conceptual schemes in heed to check whether the scheme fit with the chief letters of the interviews and whether we disregarded important information. The schemes were adapted where necessary. (v) Nosotros developed a general conceptual scheme describing the common themes that emerged from all the interviews.

In the second office of QUAGOL, nosotros connected coding the interviews past ways of Nvivo12 software (QRS International, 2020), as described in the following five steps. (i) We used the general conceptual scheme from function 1 to create a list of codes in Nvivo 12. (2) Relevant fragments of each interview were digitally linked in the software to ane or more than codes. (3) The digitally linked fragments were then analyzed using systematic within-case and across-case analysis. (iv) We organized and described concepts emerging from the analysis in a comprehensive general framework, which served as the basis to report the results of our study (v).

It is of import to note that, although these analysis stages are described here as beingness carried out linearly, we constantly moved back-and-forth between analysis stages and phases, every bit prescribed in the QUAGOL approach [33, 34]. Finally, each stage of this analysis was carried out by an interdisciplinary team comprising the interviewer, a professional ethicist, and an proficient in qualitative research. It is of import to note that a neonatologist was involved in the study design, in the grooming of the interview guide, and in the revision of the results. Still, he was not included in the analysis of the interviews because it would accept been difficult to ensure the anonymity of participants considering that the Belgian neonatologists' population is rather minor and that the transcripts included in-depth descriptions of real cases.

Ethics

The ethics committee of UZ/KU Leuven (S62867) canonical the study. All participants received written and verbal information virtually the study. Their participation was voluntary, and the informed consent procedure was respected. All data were treated confidentially.

Results

Participants' characteristics

Characteristics of participant neonatologists' varied widely in historic period (range 34–63 years) and professional feel (range 2–30 years). Most of the participants were women (n = fifteen), and xv of the xx identified as Roman Catholic. At the fourth dimension of the interviews, participants practiced in x NICUs with unlike bed capacities (range fifteen–twoscore beds). Other demographic and professional characteristics are presented in Table i.

Tabular array one Participants' and NICUs' demographic characteristics

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Ethical principles

Based on participants' accounts of past cases, we identified two main ethical principles guiding participants' conclusion-making for resuscitation at birth of EPIs: EPIs' best involvement and respect for parents' autonomy. Mostly, participants' ethical decision-making can exist described as an effort to remainder these two principles. Interviewees told us that in the bulk of cases balancing EPIs' all-time interest and respect for parents' autonomy was fast, easy, and almost unnoticeable. Withal, there were cases in which attempting to balance the principles was more than circuitous. In these situations, participants essentially assigned the two principles different weights, depending on the EPI's GA. Within the gray zone, clinical uncertainty is greatest, making it very difficult to determine whether resuscitation is truly in the EPI's best interest. Hence, parents' autonomy was valued more. Outside the gray zone, EPIs' outcomes are more certain and, therefore, EPIs' all-time interest was the main guiding principle.

Withal, participants' ethical conclusion-making in the described cases was not solely reduced to balancing best interest and respect for autonomy. Interviewees appeared to take a more comprehensive approach to decision-making and considered other relevant principles. Because they viewed the EPI and the parents equally a family unit, interviewees considered parents' interests, their chapters to cope with either a dead or a severely disabled child, and how this could affect the EPI's wellbeing. In doing and so, they took into business relationship justice implications. They reflected on how to take this holistic approach without discriminating against families. Even so, they only considered justice in terms of equality, non in terms of resource allocation. Such a comprehensive approach played a more prominent part when the balancing of EPIs' best interest and parents' autonomy was not straightforward. For quotes illustrating participants' ethical principles, see Table ii.

Table ii Illustrative quotes: Ethical principles

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EPIs' best involvement

All participants perceived EPIs' best interest as an extremely important principle and they often described themselves as being the EPI's advocate or the defender. They said the goal of the decision-making should e'er exist to place the selection corresponding to an EPI'due south best interest. This principle consists of 2 elements: pursuit of the EPIs benefit, i.e., survival with good quality of life, and avoidance of unnecessary impairment, i.e., therapeutic obstinacy.

Participants applied this principle in the described cases by doing a damage-benefit assessment to decide whether the harms associated with resuscitation were justifiable in light of the benefits gained. Clinical conditions and expected prognosis were the main elements of this assessment. However, participants were enlightened that there is more to the best involvement of a child than mere clinical aspects. As i participant said "Nosotros maintain life not vital parameters. I don't want that only the monitoring is going well. I think that life is bigger than just your heartbeat or respiratory parameters." They all agreed that life in itself was not necessarily a do good if the quality of life were extremely poor. Therefore, consideration of the likely long-term quality of life was an essential part of the assessment. Not-clinical elements similar parents' wishes were also considered very important. Participants also recognized that the all-time interest can be hard to evaluate due to clinical uncertainty and that it can depend on subjective evaluation. Consequently, in the gray zone where the clinical doubt is high, parents' wishes and parents' interpretation of the best interest were considered more important than they were exterior the grayness zone.

Respect for parents' autonomy

Respect for parents' autonomy was the second most important principle that emerged from our analysis. Participants interpreted and weighted, or valued, this principle differently, depending on the EPI'due south GA. Exterior the gray zone, the decision was not really debated considering the EPI'southward best interest was clearer and considering the guidelines explicitly indicated whether to resuscitate. Hence, respect for parents' autonomy was described mainly as parental interest. Participants said that they explained to parents the treatment programme for the EPI, only they did not really appoint them in the resuscitation decision. However, participants still valued parents' wishes and life history. They pointed out that information technology is of import to give parents the opportunity to ask questions and express their fears and wishes. This helped them to build a relationship with parents and even to modify the decision when necessary. Inside the gray zone, both resuscitation and not-resuscitation were considered ethically acceptable options. Participants actively engaged parents in the controlling to understand which selection was in the best interest of each EPI. The goal was ever to accomplish a shared decision. In cases interviewees reported a disagreement, they felt that they had to respect the parents' determination, and they generally followed it.

A few participants interpreted respect for parents' autonomy differently. Equally reported past these participants, they informed parents of the clinical situation, asked their opinion about best treatment, and tried to understand parents' point of view. They then used these insights to decide whether to resuscitate. This effectively meant that the physician made the ultimate decision, although it was heavily influenced past parents' wishes.

Parents' interests

According to participants, resuscitation decisions tin can have a astringent impact on parents' wellbeing and mental wellness. For case, parents of severely disabled children might face depression and divorce, whereas parents of non-resuscitated EPIs might feel guilt and regret. Because of this, participants believed that ethically sound conclusion-making respects not only EPIs' best involvement and parents' autonomy, but also parents' interests.

The attention participants paid to parents' interests was evident at every stage of the described decision-making process. Participants remarked that it is very of import to know parents well—not but their wishes but also their family history—and why they are asking for one or the other option. This background data was necessary to tailor the counselling and the decision-making to parents' specific needs. They also explained that even when they had to refuse parents' request, they nonetheless tried to maintain a positive dialogue with parents and to assistance them cope with the situation. In infrequent cases, participants fifty-fifty decided to resuscitate EPIs with very depression take a chance of survival so that parents could experience a sense of relief that they did everything they could for their kid.

Justice

The bulk of participants reported reflecting on the upstanding implications of considering parents' socioeconomic condition and gynecological history in the decision-making for resuscitation at birth. Participants agreed that, in theory, they should not make resuscitation decisions based on parents' characteristics. In practice, however, they admitted that parents' characteristics could be influential factors in some cases. For case, the majority of participants resuscitated—or were open up to resuscitate—an EPI below GA 24 weeks in cases in which older parents had a history of IVF, miscarriages, stillbirths, or neonatal deaths. Some participants likewise admitted that below GA 24 weeks, it was difficult non to take into business relationship particularly problematic familial situations (east.1000., addictions, other children in foster care), because they knew that these factors have a documented impact on EPIs' outcomes. In general, they were uncertain on whether to consider parents' status and to what extent. Interviewees approached this issue differently. Some just considered parents' status beneath GA 24 weeks for EPIs in disquisitional condition. Some fabricated witting efforts to minimize the influence of parents' socioeconomic status by trying to focus on applied solutions, east.g., helping parents to apply for social services specifically designed for their situation. Either fashion, they all agreed that parents' status should never be the main reason to decline resuscitation.

In ethics justice can too refer to resource allocation. Yet, only one participant spontaneously mentioned resource allocation. She stated that extreme, severe disability can be unfairly hard for the child, the siblings, the parents, and the state responsible for a citizens' healthcare. However, she did not elaborate more about how justice as resource allocation might influence her decisions. When asked directly, all the other participants agreed that resource allotment should non be considered in the decision-making because Belgium is a loftier-income state with sufficient resources to offering aggressive treatment to every EPI who might do good from information technology. They were likewise aware that in lower-income countries, economic considerations might inevitably contribute to conclusion-making; and they felt fortunate to be able to focus only on the all-time interests of children and their families without worrying about infirmary resources.

Ethical challenges

We identified three primary ethical challenges experienced by participating neonatologists based on the cases they reported: (one) disharmonize between EPIs' best interest and respect for parents' autonomy, (ii) limitations of the guidelines, and (three) dealing with clinical dubiousness. For illustrative quotes on upstanding challenges, see Table iii.

Table 3 Illustrative quotes: Ethical challenges

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Conflict betwixt EPIs' best interest and respect for parents' autonomy

The master ethical claiming emerged from cases described past participants was a conflict betwixt EPIs' all-time involvement and parents' autonomy. All the described cases shared the same primary characteristics with regard to this particular challenge. All were cases in the gray zone, where the guidelines accept both resuscitation and not-resuscitation and recommend to decide through shared controlling. From the interviews nosotros noticed that many participants gave a different interpretation of shared controlling. They felt that the ultimate decision is of the parents and that their role was mainly to enable parents to make such a determination and to respect it. Thus, participants felt that they had to accept parents' requests, despite believing such a request was against the all-time interest of the EPI. This happened when parents insisted on initiating resuscitation at nativity for an infant in critical condition, or when parents asked that their EPI in good condition not be resuscitated. For many participants this was a source of moral dubiousness, that is, a sense of uncertainty of which activeness is morally justified. On the one hand, they told us they should be the child'south advocate, and they felt frustrated that they could not act like information technology. On the other mitt, they still valued parents' autonomy, and they questioned whether overruling the parents' decision would take really been the correct choice. Moreover, despite the internal discord, participants frequently showed that they understood why parents were making such a request. This realization made it even more hard to consider the possibility of overruling them. In rare instances, moral dubiety turned into moral distress. Two scenarios led to such moral distress. First, when a resuscitated EPI died later months in the NICU and after undergoing multiple painful interventions. Hither, participants felt that they had actively harmed the child and that the damage was pointless since the EPI died as predicted. Second, when a non-resuscitated EPI in very good condition at birth took hours, or even days, to dice. Participants interpreted this tedious death as proof that the EPI might have survived if resuscitated.

Actually, our analysis indicated that these kinds of conflicts between principles could occur also for EPIs built-in outside the gray zone. However, in these cases, participants felt justified in refusing parents' requests, because their decision was well within the guidelines' indications. Therefore, these situations were quickly resolved without generating long-lasting moral dilemmas or moral distress.

Limitations of the guidelines

Some other of import ethical claiming appeared in reported cases where participants perceived limitations in the guidelines. The majority of participants explained that they used the regional or unit guidelines to guide the decision-making. For them, guidelines were based on best interest and autonomy considerations and, therefore, they were a useful and appropriate tool to guide the decision-making. Withal, considering of the clinical and ethical complexity of EPI resuscitation at birth, they felt that the guidelines could not cover every unmarried situation. For situations not addressed by the guidelines, the guidelines actually created an untenable imbalance between principles. In these situations, participants felt that the guidelines put more weight on some principles but disregarded others. This fabricated it difficult for participants to identify the best option and to act accordingly.

For example, for EPIs built-in at GA 25 weeks, the majority of Belgian guidelines recommend allowing parents to decide whether to resuscitate. However, some participants believed that the overall outcomes were sufficiently favorable to warrant a resuscitation attempt, and not doing and then meant failing to protect the best interest of the EPI. Similarly, at GA 23 weeks, virtually guidelines recommend non-resuscitation, but some participants believed that sometimes this could infringe on parents' autonomy. Therefore, they proposed lowering the gray zone to GA 23–24 weeks. According to them, this would allow neonatologists to resuscitate EPIs in expert status at GA 25 weeks and to protect the kid's best interest. It would also allow them to offer resuscitation at GA 23 weeks. They explained that, at present, they do not offer resuscitation at nascency for EPIs born at this age, although they are open to perform information technology if parents actively request it. For others, the main trouble was non the specific GA threshold, but instead their unit'south inflexible interpretation of the thresholds, which were followed strictly. These participants believed that more flexible thresholds would let them to balance the principles on a case-by-case manner, and this would help them decide which one should be weighed more in a specific case. Manifestly, guidelines are always prone to change and also in Belgium in that location volition be adaptations in the future.

Dealing with clinical uncertainty

The last main upstanding challenge described by neonatologists in our study related to doubtfulness. Interviewees explained that deciding whether to resuscitate EPIs at birth meant dealing with clinical incertitude. Determining the chances of survival and quality of life for each EPI is challenging. In participants' words: "… these infants surprise you." Many participants mentioned cases in which an EPI in critical condition survived and had a good quality of life. In other cases, an EPI in good condition died due to a deleterious postnatal event. In participants' cases, clinical and moral uncertainty became linked: As clinical uncertainty increased, it became more than difficult to decide whether resuscitation or not-resuscitation was the best option for that EPI.

Participants acknowledged that clinical uncertainty is not specific to EPI resuscitation but is intrinsic to neonatology. Indeed, we noticed that, compared to the previously discussed challenges, participants seemed more prepared to be confronted with clinical uncertainty. In their words, to be a neonatologist, one must take that one cannot control everything and that there will e'er be a certain level of uncertainty associated with their determination, whatever that is.

In some of the described cases, clinical uncertainty seemed to take simplified the determination-making somewhat. The guidelines let parents make resuscitation decisions in the grayness zone due to the high clinical incertitude associated with EPIs born in this catamenia. When faced with mounting clinical dubiety, information technology was easier for participants to accept parents' requests compared to situations in which an EPI was born in the gray zone, the prognosis was clearer, and they felt that parents' requests were against the all-time interest of the EPI. From the cases neonatologists described we observed that when the prognosis was highly uncertain they had no elements to say that parents' request was confronting the involvement of the EPI, even if mayhap they personally would accept called a different option. Hence, it was somehow easier to comply with parents' asking because their objection was more personal than professional and they believed that purely personal opinions were non enough to interfere with parents' autonomy in the grayness zone. When the prognosis was more than sure and parents' request was against what they believed was in the all-time interest of the EPI based on medical data, than they felt a conflict between EPIs' best interest and parents' autonomy as described previously.

Some participants also discussed uncertainty in terms of treatment, rather than only outcomes. They explained that they did not take much experience treating EPIs at GA 22–23 weeks, since there are then few cases. Of these, merely a pocket-sized number of infants are resuscitated. Every bit their experience was mainly anecdotal, they could not guarantee that the same treatments given to older EPIs would also benefit younger EPIs. They also agreed that by resuscitating more EPIs at GA 22–23 weeks, they would proceeds more than cognition and be able to better treatment not but for these infants merely also for older EPIs. Nevertheless, they remarked that gaining noesis should never exist the primary reason to resuscitate.

Strategies to bargain with upstanding challenges

Despite the variety of participants' experiences, all interviewed neonatologists described two kinds of strategies to deal with these ethical challenges. They can exist broadly characterized as "setting limits" and "trial of treatment." Illustrative quotes on the strategies they used to deal with ethical challenges are presented in Tabular array 4.

Table 4 Illustrative quotes: Strategies to deal with ethical challenges

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Setting limits

As described past participants, this strategy consists of restricting parents' requests to varying degrees (i.e., what the doctor would/would non attempt) to promote the EPI's best involvement. Depending on the state of affairs, different participants used different limits, and they restricted parents' requests to a more or bottom extent. Participants employed this strategy mainly when they perceived an actual or potential disharmonize between principles.

The easiest reported manner to ready limits was referring to the guidelines. For example, if parents requested non-resuscitation above GA 25 weeks, participants explained that they had a professional limit vis-à-vis the guideline and that they would non have a non-resuscitation request at this GA. However, they would withal try to understand why parents asked non-resuscitation so that they could address parents' worries. Participants said these parents were often afraid of futile treatment, inability, or they idea the situation was worse than it really was. In these cases, participants would reassure parents that if the babe did non respond well to handling after admission in intensive care, they would discuss with them the possibility of withdrawing treatment. In this style, they protected the EPI'due south all-time involvement equally well as respected parents' interests and autonomy.

Participants explained that they would make exceptions to the guidelines, only they would notwithstanding set limits in these exceptions. At the time of the interview, virtually participants agreed to resuscitate even below the recommended threshold to respect parents' autonomy and to preserve their wellbeing. However, to protect the EPI from therapeutic obstinacy, they all gear up limits on the extent of care they would provide. For example, in this scenario, they agreed to initiate resuscitation, but they fabricated it articulate to parents that they would not provide CPR or adrenaline.

Many participants tried to fix the same limits also in the greyness zone when they disagreed with parents' request. Withal, due to clinical and moral incertitude, participants oft struggled to decide what limits to fix and fifty-fifty whether limiting parents' request was the correct thing to do. In some cases, setting limits was not possible due to lack of time for appropriate counselling, or because parents persisted in their request. These situations were often the ones in which we observed long-lasting moral distress. Moreover, we observed that these kinds of cases seemed more common in units where guidelines were rigidly interpreted. Here, participants felt it to exist unethical to become confronting guidelines if parents did not agree with it.

Trial of treatment

The second strategy described to deal with ethically challenging situations was "trial of treatment." This second strategy consisted of attempting resuscitation at nascency with the agreement that if the EPI was not responding well or developed a severe postnatal event in NICU, physicians would withdraw treatments. This strategy gave participants a sort of moral relief. Participants explained that information technology is difficult to obtain a articulate and sure prognosis before or even at nascency. Therefore, resuscitating and seeing how the EPI reacted immune the participants to "give a gamble" to the EPI and allowed them to take time to gather better information on possible outcomes. Moreover, parents had the opportunity to spend some time with their child, and they could see that at that place was nothing else to practice. This, in plow, might reduce the run a risk of feeling regret. Some participants admitted that trial of treatment is not the best choice in every situation. However, considering of the many advantages, this strategy seemed to be the preferred option in the majority of cases, with some participants advocating for more resuscitation attempts even at the earliest GAs.

Give-and-take

Two ethical principles were fundamental in neonatologists' ethical reasoning regarding resuscitation/non-resuscitation decisions at birth: the EPIs' best involvement and respect for parents' autonomy. Participant neonatologists considered and aimed to strike a balance between these two principles in virtually every case. This was not surprising, as EPIs' best interest and respect for parents' autonomy commonly appear in the ethical literature as justifications for both resuscitation and non-resuscitation of EPIs [11]. Furthermore, these principles are also primal in Belgian guidelines for resuscitation of EPIs [31]. This could explain why, amid all the ethical principles discussed in the interviews, these ii were consistently the most important for participants in their decision-making. Guidelines also had a relevant place in participants' ethical reasoning. Indeed, most participants used them to some degree to brand decisions at birth. Guidelines provided general rules, principles, and advice as well every bit something to "ballast" participants' decision-making in such a circuitous and emotionally sensitive area. A related study on the touch of institutional ethics policies on clinicians' dealing with euthanasia requests in Belgium found similar results [35]. Euthanasia policies influenced clinicians' practices and perspectives on euthanasia. Moreover, policies guided clinicians through the euthanasia process and supported them in such complex and sensitive conclusion-making.

The importance placed on EPIs' best interest and respect for parents' autonomy tin explain why conflicts between these principles were perceived as the nigh difficult ethical challenge. Participants felt compelled to abet for the EPI. They also acknowledged that at that place is always a certain degree of uncertainty regarding outcomes, making information technology difficult to overrule parents. Participants' reflections showed that, although ethicists agree that neonatologists should theoretically decline parents' requests that are clearly confronting the EPI's best interest [36,37,38,39,40,41,42,43,44,45], this can exist hard to exercise in practice. Our analyses revealed that conflicts between principles could be even more than astute in the GA gray zone. This might exist because exterior the gray zone participants had more resource to approach the situation in an ethically satisfying way, whereas inside the gray zone, there was an added layer of complexity introduced by the guidelines. Well-nigh Belgian guidelines assigned parents every bit the main determination-makers inside the gray zone because of the high clinical dubiousness that characterizes births in these weeks. Notwithstanding, not every case in the gray zone will be highly uncertain; sometimes in that location are favorable indicators about the EPI'southward likelihood of survival and quality of life. Participants tended to accept parents' requests, even when they believed that such requests were clearly against the best interest of the EPI. They acquiesced considering they felt that they did not have the say-so to override the guideline, and hence parents' requests. Although these situations are rare, they ofttimes resulted in moral distress, particularly in units where guidelines were interpreted rigidly. Participants felt guilty and frustrated for not beingness able to advocate for the child; some gave very emotional and distressed accounts, even years after the event. Thorne et al. described similar reactions in a study on moral distress response patterns in NICUs [46].

Studies on moral distress of healthcare professionals in NICUs found that, although moral distress tin can ascend in any circuitous controlling, it is frequently associated with treatment decisions for EPIs [47, 48]. Institutional structures, in detail unit civilisation and inadequate guidelines, were often reported every bit one of the causes of moral distress [46,47,48]. Interestingly, studies found moral distress much more prevalent in cases in which practitioners felt they were "doing likewise much" compared to cases in which parents opted for palliative care [47, 48]. We observed that moral distress arose from both resuscitation and non-resuscitation situations so not only when they felt they were doing "too much" just also when they felt they were "not doing enough". This result might be a result of the specific Belgian context. While international guidelines advise physicians to starting time resuscitation at GA 25 weeks, most regional and unit of measurement guidelines in Belgium identify the gray zone at GA 24–25 weeks [49]. This means that parents tin opt for not-resuscitation even at GA 25 weeks. However, many participants felt that the guidelines were too conservative. They believed that at 25 weeks the outcomes are proficient enough to warrant a trial of treatment, and they felt that not-resuscitation would go against the all-time interests of EPIs. Finally, although all NICU healthcare providers feel moral distress, most studies even so focus on nurses' experiences [47]. The field needs to better empathise how neonatologists experience moral distress and to identify its causes and consequences. Such noesis is imperative in order to support neonatologists in their controlling and help them to efficiently handle moral distress.

Finally, our analyses revealed that participants were more interested in the impact that resuscitation decisions have on EPIs and their family unit rather than the impact that they might take on social club at big. This was particularly axiomatic when nosotros looked at how participants discussed justice in the interviews. Only one participant mentioned resource allocation spontaneously, and when asked straight, everyone agreed that information technology should not influence their decision-making. This unanimity could be because Kingdom of belgium is a loftier-income state with a well-financed and organized public health system, significant that doctors and parents are not constrained past the cost of care. This finding is nearly identical to what nosotros institute in the ethical literature: Few articles mentioned justice, and they all agreed that it should non be considered in determination-making [11]. Nonetheless, these studies, like ours, were from high-income western countries; thus, they are hardly generalizable on a global level. In fact, studies originating from lower-income countries [sixteen, 50,51,52,53,54] described situations in which neonatologists had to deal with lack of hospital resource (eastward.yard. lack of sufficient ventilators) or parents' inability to pay the hospital bill. These situations tin touch on the care provided. For example, a study from the Philippines plant that if parents are unable to afford renting a ventilator, physicians would attempt mitt ventilation or they would try taking of support infants on low ventilation settings hoping they will not demand information technology anymore [53]. Lack of resources in some instances tin can lead to consider hospital or family resource in the determination-making [16, l,51,52, 54]. A study from Lebanon found that hospital resource is the second well-nigh relevant factor in resuscitation decisions after the infant's prognosis. Similarly, a participant in an Indian study explained that he would not effort resuscitation below 28 weeks if parents were not able to afford information technology. [51] Nonetheless, in all these studies we see attempts to overcome the limited resource to provide the best care possible to the patients. This suggests that neonatologists in lower-income countries notwithstanding value EPIs' best interest more than justice but, due to unfavorable circumstances, they have to have justice into business relationship. This is fifty-fifty more than evident in a study investigating Chinese neonatologists' attitudes toward resuscitation of EPIs and the impact of cost of intendance on their attitudes. Ma et al. establish that the toll of care was a master factor in deciding whether to resuscitate [16]. Interestingly, 39.seven% of respondents in this study indicated that they would seek financial aid to support families who cannot afford care. Similarly, some our participants indicated that they would try to assistance parents with low socioeconomic condition to find the necessary resources for post-discharge EPI intendance.

However, justice as an ethical principle can besides refer to fugitive discrimination. To this regard, participants in our study were peculiarly concerned with discrimination related to parents' socio-economic status. There is a documented relationship betwixt parents' socioeconomic status and EPIs' neurodevelopmental outcomes [55,56,57]. Thus, participants asked if and to what extent they are immune to consider it in the controlling. It is our impression that many participants were hesitant to hash out this topic. This hesitancy might have limited our understanding of the existent impact of justice on decision-making.

Strengths and limitations

Our results originated from a adequately large sample of neonatologists. We interviewed 20 neonatologists (i.e., 18% of the total population of neonatologists in Belgium) working in all three Belgian regions (Flanders, Brussels, and Wallonia). Nosotros included 10 out of the 19 Belgian hospitals with a NICU. Participants and hospitals nowadays a good variety in terms of relevant characteristics. Withal, our sample is rather homogenous in terms of ethnicity, gender, and religious affiliation, which might have limited the generalizability of the results. Similarly, in that location is an underrepresentation of NICUs with a larger number of beds (only one NICU had more than than 35 beds). This might have again affected the results and their generalizability as NICUs with more beds normally care for more than cases and are more experienced in this type of controlling. Moreover, neither the participants nor the interviewer are native-English speakers. This might take hindered participants' accounts of their experiences, feelings, and thoughts, especially regarding sad topics similar moral distress or the impact of parents' socioeconomic status. Finally, we asked participants to describe real past cases to avoid discussing hypothetical scenarios and to take a better understanding of real practice ethical controlling. However, these are nonetheless a posteriori reported cases that cannot requite a consummate and comprehensive description of clinical do.

Conclusions

Our results showed that in making resuscitation decisions for EPIs, participants always tried to balance the EPI's best involvement and respect for parents' autonomy. Because of this weighing, they perceived it to be peculiarly challenging when dealing with cases in which these 2 principles clashed. When participants could successfully gear up limits to parents' requests without overriding them entirely, they felt satisfaction because they could protect the EPI'southward best interest while respecting parents' autonomy. However, when setting limits was not possible, participants often adult moral distress. This suggests that we need to better sympathise neonatologists' moral distress in EPI resuscitation decisions to develop meliorate strategies that can assist neonatologists cope.

Availability of data and materials

The datasets generated and/or analysed during the electric current study are not publicly available to protect the privacy of participants as well as other persons involved in the discussed cases but are available from the corresponding author on reasonable request.

Abbreviations

EPI:

Extremely premature infants

GA:

Gestational historic period

NICU:

Neonatal intensive care unit

QUAGOL:

Qualitative assay guide of Leuven

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Funding

All phases of this written report were supported by a grant from Enquiry Foundation—Flemish region (FWO; Dutch: Fonds voor Wetenschappelijk Onderzoek—Vlaanderen). Grant number 1144319N to AC. The remaining authors have no financial relationships relevant to this article to disembalm.

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Affiliations

1. Centre for Biomedical Ethics and Law, KU Leuven, Kapucijnenvoer 35/iii, 3000, Leuven, Belgium

   Alice Cavolo & Chris Gastmans

2. Academic Centre for Nursing and Midwifery, KU Leuven, Kapucijnenvoer 35/four, 3000, Leuven, Belgium

   Bernadette Dierckx de Casterlé

3. Pregnancy, Fetus and Newborn, Department of Evolution and Regeneration, KU Leuven, UZ, Herestraat 49/7003 21, 3000, Leuven, Belgium

   Gunnar Naulaers

Contributions

Ms. AC contributed to the written report blueprint, data collection, data analysis, drafted the initial manuscript, and reviewed and revised the manuscript. Dr. CG contributed to the written report pattern, information analysis, reviewed the manuscript, and provided mentorship. Dr. BDdC contributed to the study design, data assay, reviewed the manuscript, and provided mentorship. Dr. GN contributed to the report design, critically reviewed the manuscript for important clinical intellectual content, and provided mentorship. All authors read and approved the final manuscript.

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Correspondence to Alice Cavolo.

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The study received ethical blessing from the ethics commission of UZ/KU Leuven (S62867). Participants received all the necessary information well-nigh the study and were exist given time to reflect on the data and decide whether they wanted to participate. All participants signed a written informed consent form prior participation. Before the outset of each interview, participants were asked to confirm consent to participate and to exist audio recorded. They were also reminded that they could withdraw at any moment without further justification. All phases of this written report were carried out in accord with the Declaration of Helsinki.

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Cavolo, A., de Casterlé, B.D., Naulaers, 1000. et al. Neonatologists' decision-making for resuscitation and non-resuscitation of extremely preterm infants: ethical principles, challenges, and strategies—a qualitative report. BMC Med Ideals 22, 129 (2021). https://doi.org/ten.1186/s12910-021-00702-7

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• Received: 24 June 2021

• Accepted: fifteen September 2021

• Published: 25 September 2021

• DOI : https://doi.org/10.1186/s12910-021-00702-seven

Keywords

• Prematurity
• Extremely preterm
• Ideals
• Decision-making
• Resuscitation

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