The legal framework for healthcare decision-making for children in Ireland is quite broad as it is framed by national and international legal instruments as well as domestic case law owing to the common law system. This dynamic system is composed of various sources of law within a hierarchical structure, such that certain sources will prevail over others where a conflict arises. Sources of law include the Irish Constitution, legislation, case law, EU law, and international law. The Irish Constitution is the highest domestic source of law. It is the role of the courts to interpret and apply these various sources when hearing a case. In matters involving treatment decisions for children, it is the High Court which has primary jurisdiction, and applications are usually brought by an interested party such as the parents/legal guardians or the hospital/health service. The legal framework within which these decisions are made has changed over time to the point where there is now a greater recognition of the rights of the child [5, 12,13,14,15]. This is best illustrated by the insertion of Article 42 A in the Irish Constitution in 2015.

Internationally, the most prominent legal instruments include the United Nations Convention on the Rights of the Child (UNCRC) as well as the European Convention on Human Rights. The UNCRC recognises the distinct place of the child within international law [7, 16] and is a key international human rights treaty that has been ratified by 196 countries [16]. It promotes and protects the rights of children under the age of eighteen and ensures that children have the right to use their autonomy in the clinical environment when life-changing decisions are considered [16]. Ireland ratified the UNCRC on 21 September 1992 thereby signalling a commitment by the Irish State to promote, protect and fulfil rights in the Convention for all Irish children. This includes protection, participation, and provision rights [17]. Participation rights include recognition of the child’s opinion, freedom of expression, and access to appropriate information. For instance, Article 12 provides that States are to “assure to the child, who is capable of forming his or her own views, the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.” This is a key part of the UNCRC as it does not refer to a specific age requirement but instead focuses more on the child’s capability of forming their own views freely in relation to all matters affecting the child including healthcare decisions [16, 18]. The view need not be an intelligible one and need not be expressed in words, instead “it is recognised that views can be expressed through non-verbal forms of communication including play, body language, facial expressions, and drawing and painting” ([17]:p 21–22). While these views may not be determinative, they can be taken into account in accordance with the age and the maturity of the child in a specific instance. Nonetheless, in Ireland the views of the parents have traditionally dominated the decision-making process, owing in part to the interpretation of the Constitution.

The protection and recognition of human rights in the Constitution is significant as it underlines their status in society and protects them from political interference. In this regard, the Irish Constitution contains a mix of both enumerated and unenumerated rights. Prior to the referendum on children’s rights, Article 42.5 was the only constitutional provision that expressly referred to the rights of the child. The child did however benefit from unenumerated rights flowing from Article 40.3 of the Irish Constitution, as acknowledged in cases such as G v An Bord Uchtála. This case concerned a dispute over the proposed adoption of a child. The Supreme Court recognised the child’s natural right to have her welfare safeguarded, which was a personal right within the meaning of Article 40.3. The challenge, however, is that these rights have typically been subsumed within rights of the family thereby restricting the full realisation of the child’s rights ([17], p 35).

Article 41 and 42 of the Irish Constitution protects the rights of the family. Article 41.1.1° recognises the Family as “the natural primary and fundamental unit group of Society, and as a moral institution possessing inalienable and imprescriptible rights, antecedent and superior to all positive law”, while Art 41.1.2° states, “The State, therefore, guarantees to protect the Family in its constitution and authority, as the necessary basis of social order and as indispensable to the welfare of the Nation and the State.” Articles 41 and 42 provide strong protections for the family such that parental decisions are respected unless the threshold for State intervention is satisfied. The Constitution was amended as a result of the referendum relating to children which was held in 2012. This led to the introduction of Article 42 A which provided for express constitutional protection of the rights of the child for the first time in Ireland, i.e., “The State recognises and affirms the natural and imprescriptible rights of all children and shall, as far as practicable, by its laws protect and vindicate those rights”. It is through case law that the scope of this provision will be defined over time.

In addition to navigating constitutional provisions and case law, the work of healthcare professionals is also shaped by professional standards and guidelines. These standards can be said to distil the legal framework into key principles to which healthcare professionals are expected to adhere although the standards are not binding in law. Nonetheless, these standards are significant for the internal regulation of the healthcare profession and may be “indirectly incorporated into law” (p175) [19]. In effect, there is an expectation that care should be provided which aligns with the Irish Medical Council (IMC), ‘Guide to Professional Conduct and Ethics for Registered Medical Practitioners’ [20]. Section 22.1 of this IMC Guide sets out that the medical practitioner should gain the assent of the child, as far as possible, by involving and consulting the child or young person on the decisions about their healthcare. Moreover, the medical practitioner is to provide the child or young person with “information in accordance with their age and maturity, listen to their views and treat them with respect.” ([20], p 25). Throughout this assent process, the importance of appropriate communication is also reflected in Sect. 46.2 where it provides that the medical practitioner “should be sensitive in discussing end of life options, including palliative care, and make sure that patients and their families, have a clear understanding of what can and cannot be achieved” ([20], p 45). The guide is also clear that there is no obligation to start or continue treatment where it is judged, “unlikely to work; might cause the patient more harm than benefit; is likely to cause the patient pain, discomfort or distress that will outweigh the benefits” ([20], p 45). Nonetheless, applying these legal principles in practice is more complex as the decision-making process is also shaped by the views of the child, if included, as well as parental authority.

Indeed, another key principle in the UNCRC is the best interests of the child. Article 3 states that in all actions and decisions concerning children, including those undertaken in courts of law and health institutions, the best interests of the child must always be a primary consideration [16]. The best interests principle is regarded highly within the legal and medical context, as all clinicians must give due consideration to the best interests of the child in all their decisions affecting children [18]. Parents/legal guardians and clinicians are key stakeholders within discussions around LSMT for children, and both must have the child’s best interests as their primary concern but are sometimes influenced by different factors [7, 21, 22]. In addition, the application of this principle within the clinical setting can be understood differently [1]. There are rare instances when clinicians appeal the parents’ decision (or vice versa) for the child if they feel that the initiation or non-initiation of a LSMT is considered harmful and not in the child’s best interests [22]. This can create a challenging environment of care, and in some instances parent-clinician conflict may occur as a result. This paper aims to explore this challenging environment of care and looks at how clinicians in Ireland have approached ethical decision making around providing life sustaining technology to children, particularly in terms of the legal jurisdiction in which they operate.

We used an innovative methodology that combined findings from (1) a secondary qualitative analysis of semi-structured interviews with clinicians and; (2) results of an analysis of case law into the initiation of medical treatment. This paper is part of a larger programme of research conducted within the TechChild project, which is funded by the European Research Council. In a previous qualitative study, we explored the perspectives of clinicians who contribute to bioethical discussions across international hospital settings. Semi-structured individual interviews were carried out via Zoom [23] between December 2021 and May 2022 with members of formal or informal (e.g. multi-disciplinary team discussions, colleague consultation) clinical bioethics committees across Europe and the United States (US). Ethical approval was granted from the host institution in March 2019, of which this study is a part of, that ensured all ethical guidelines were followed and were in line with the European Union (EU) General Data Protection Regulation (GDPR) requirements. All participants were emailed an electronic participant information leaflet along with a link to an online consent form prior to data collection.

The interviews focused on exploring the experiences of working with clinicians on the bioethics of initiating long-term ventilation to sustain a child’s life, and full details of these interviews are reported elsewhere [24]. A secondary analysis of this interview data was carried out in September 2022 using qualitative descriptive methods to identify themes within the interview data with relevance to legal aspects that influence medical decision-making [25, 26]. We extracted a subset of this data and focused on interviews that were conducted with clinicians based in Ireland, transcripts were imported into NVivo V.12 qualitative analysis software [27]. Initial codes were generated, that were further refined into broad themes by two researchers (MB and LC) until consensus was reached [28, 29].

A doctrinal analysis of Irish case law was conducted (JL) which allowed us to investigate how decisions regarding LSMT for children are handled first-hand within the legal environment. The doctrinal methodology concentrates on the letter of the law and facilitates detailed analysis of case law due to the emphasis on precedent. These cases involved a mixture of High Court and Supreme Court decisions which examined clinical factors and legal principles arising in the context of decisions to commence, withhold or withdraw treatment for children. Relevant cases were identified through the vLex Justis database using the decision of In Re JJ as the starting point. This allowed for a review of cited authorities and subsequent cases in which In Re JJ was cited. This review was supported by an analysis of the precedent map created by the legal database.

This paper has combined findings from both sources of evidence to highlight similarities or differences between how medical decisions for children requiring LSMT are carried out in practice and the legal environment in Ireland, to allow for a more nuanced and rigorous exploration [30, 31].

Thirty-three interviews were undertaken as part of the larger qualitative study [24], four of which involved clinicians working in the Irish legal jurisdiction, all medical doctors with experience of being a main medical decision-maker for children at a time when LSMT decisions are considered. Themes that were identified in the analysis of these transcriptions described the interpretation of the legal context during the decision-making process in PICU. These themes are: 1. Sense of responsibility of clinician, 2. Respecting the role of parents, and 3. Parental decision-making in the context of the child’s best interests.

Five relevant cases (2001–2021) were identified, only one of which was pertinent to LSMT. Three cases address the withholding of a form of medical treatment, one addresses the provision of medical treatment, and one concerns the provision of a screening test.

Clinicians spoke about their status as a healthcare professional and how the authority associated with this role contributes towards making life-altering medical decisions for children. The majority expressed how parents often put a lot of trust into clinicians as healthcare professionals, and therefore felt that they would make the best choice for their child when it came to making difficult medical decisions as they valued and respected their expert medical opinion:

“They just trusted you, you’re the professionals, you know what you’re talking about. You know what you’re doing you know” (Clinician, Ireland)

Two clinicians also spoke about specific cases which were incredibly emotionally difficult for parents, and how many parents were not psychologically strong enough to make life-altering decisions for their child. Some parents wanted to avoid the responsibility completely and did not want to carry this burden, and therefore relied on clinicians to do it for them and were relieved that they could do this for them. It could also be the case that parents did not want to carry the burden of making such life-altering decisions for their child as they did not want to experience the feeling of guilt afterwards:

“And the parents were actually happy with the consensus that was reached. And they felt that they didn’t have the ownership” (Clinician, Ireland)

“The parents were very grateful that the decision was taken off them completely” (Clinician, Ireland)

Another clinician described a situation whereby a parent was so overwhelmed and lost given the distressing situation they were dealing with, that they completely handed over control and were willing to let them do whatever they thought was the right approach to help their child survive. They were desperate to take whatever measures they felt were necessary for their child:

“I said to his dad will we put on his CPAP mask and dad just shouted at me, I’ll never forget it, he was like ‘do whatever you want, we don’t know, just do whatever you need to do’” (Clinician, Ireland)

Additionally, all clinicians also recognised the importance of giving parents their voice when it came to the decision-making process, but also respected that some parents simply do not want to be involved:

“I think it depends on the parents you have as well, not every parent is going to partake in an ethics committee or even want their voices heard” (Clinician, Ireland)

Two clinicians also discussed situations when they felt an obligation as a healthcare professional to step in and make decisions on behalf of the child when they believed parents were not capable of making decisions regarding their child’s LSMT. Specific cases were discussed by clinicians when they felt parents were not capable to make such life-altering decisions, and used their clinical judgement and responsibility to make the decision despite the parents not being in agreement with them:

“But I suppose we knew it was for the best for that child, but we had no buy-in from the parents with that… I suppose the Consultant made that decision that this was the plan for that child” (Clinician, Ireland)

“Although she may have had legal capacity to make decisions on behalf of her child as a mother, we weren’t quite sure whether she really had the capacity to make her own decisions herself at that stage” (Clinician, Ireland)

Clinicians interviewed also reflected on previous medical decisions they had made or contributed to and recognised that sometimes they felt that they may not have given the parents enough of an opportunity to contribute towards decisions about their child and felt that they could have been more open with them. Two seemed regretful when reflecting back on these experiences:

“…I’m not too sure if we are always really open and transparent about what we do in the acute setting, if we’re transparent enough with them” (Clinician, Ireland)

“You know I think we are so used to doing it that we just do it and assume they want all of this done” (Clinician, Ireland)

As noted earlier, healthcare professionals have professional standards of conduct and ethics to follow when making life-altering medical decisions, and do not have an obligation to start treatment where it would not benefit the patient [20]. Evidence from court cases in Ireland highlight the important role that clinicians and medical evidence can play when determining the outcome of cases in this jurisdiction. This is illustrated by the High Court decision in Re Baby A.B. [2011] 1 IR 665.

The child at the centre of Re Baby A.B. [2011] 1 IR 665 was a three-month-old baby who was very unwell due to acute bronchiolitis. The child’s condition continued to deteriorate to the point where he required ventilatory support to prevent respiratory failure. It eventually became clear that the child required a blood transfusion. The child’s parents, committed Jehovah's Witnesses, were opposed to the procedure on religious grounds. This prompted the hospital to apply for an order sanctioning the transfusion. Evidence was presented that the child’s life was in danger and that no medical alternatives to the transfusion existed. The parents understood that their religious objection would be overridden by the Court, and they appeared to be resigned to this. The judge had no hesitation in concluding that the facts of this case justified intervention as the child’s life, general welfare and other vital interests were at stake. The court highlighted that the order granted was limited to the clinical events at issue. As such, the decision was not to be taken as conferring on clinicians an open-ended entitlement to administer treatment to the child regardless of the parents’ views. While medical evidence may appear determinative in many cases, this does not diminish the need for appropriate consultation.

In the case of SR (a Minor and a Ward of Court) [2012] 1 IR 305, the Court noted that “Although the views of parents and doctors must necessarily be taken into consideration in determining the correct course of action, the decision is now solely one for this court.” [[2012] 1 IR 305, 324] Nonetheless, the concluding paragraph in the judgment was to address the weight of medical opinion, and in doing so the Court effectively acknowledged a domain of competence which the Court would be reluctant to infringe upon. Kearns P examined the question of ‘whether it would ever be appropriate for a court to require a medical practitioner to adopt a course of treatment which in the bona fide clinical judgment of the practitioner is not in the best interests of the patient.’ [[2012] 1 IR 305, 325] On this point, it was stated:

I cannot conceive of any circumstance where such an order would be suitable, as this would clash with the primary duty of the medical practitioner to act in the best interests of their patient. The Hippocratic Oath emphasises the duty on doctors to do no harm to their patients, and that would be difficult to reconcile with an order of the court requiring them to treat a patient in a manner inconsistent with their own clinical judgment. [[2012] 1 IR 305, 325]

These type of clinical cases are, in many situations, extremely complex and often the underlying issue is that there is disagreement on the basic understanding of what constitutes the child’s best interest. The effect of this judgement is to suggest that the healthcare professional may be best placed to define the bioethical parameters of a LSMT decision, in the context of what would be considered the best interests of the child.

Clinicians expressed that they do not always want to be the person responsible for making such life-altering decisions for children, and it was clear that they respected the need for parental autonomy. Two spoke of a shift in healthcare decision-making that incorporates and encourages a more shared decision-making approach between parents/legal guardians, clinicians, and bioethics committees, and expressed that it is important to provide parents and families with as much information as possible before they agree to anything or make a decision:

“I think it’s about just having that open honest and transparent conversation with the parents” (Clinician, Ireland)

A clinician also discussed how even though they felt they were under pressure to make the decisions on the parent’s behalf, they still believe that parents and families should have the final say on their child’s medical care. It was clear that some clinicians felt conflicted when faced with these scenarios, as they felt their obligation as a healthcare professional to act accordingly but also wanted to ensure that the parents and family made the decision:

“He was like ‘just tell us what to do’, you know, and I was like ‘that’s fine, we can do it this way’ you know. But I didn’t want to take that decision from them” (Clinician, Ireland)

The cases above demonstrate the important position of power the clinician holds in determining the best interests of the child, the family clearly holds a special position in the Irish Constitution and is considered the natural primary and fundamental unit group of society. In this context, parental autonomy is a concept that is highly regarded within the Irish legal framework and has been of central importance in several cases concerning the withholding or commencement of life-altering treatment for children [32]. The strength of parental authority is illustrated by the pre-Article 42 A case of North Western Health Board v HW [2001] 3 IR 622 in which the parent’s refusal of a heel prick test was to be respected regardless of the medical evidence presented. The State could only intervene in exceptional circumstances where the parents fail in their duty to the child. Denham J held that this was not one of the exceptional cases where intervention was required to vindicate the child’s constitutional rights. The case established a particularly high threshold to justify State intervention in such matters.

Nonetheless, the scope of decision-making authority possessed by clinicians may be greater than expected. As noted above, the decision of SR [2012] 1 IR 305 recognised that a clinician would not be forced to provide medical treatment which they did not consider to be in the best interests of the patient. Such treatment cannot be compelled by the parent/legal guardian despite their status under the Irish Constitution. Similarly, In Re JJ [2021] IESC 1 the view of the Court was that the legality of a decision to withhold treatment is determined by whether the judgment is one to which the clinician can properly arrive at. This domain of competence does not extend to decisions for the administration of treatment as this requires appropriate consent. As such, while there may be a desire to involve parents in decision-making to the greatest extent, the parental influence in cases involving young children may be more limited than expected.

Parental decision-making in the context of the child’s best interests

In the TechChild interviews, clinicians often spoke about the need to address the best interests of the child, and the importance of considering these interests when making decisions regarding their medical care. However, it was clear that there is a lack of guidance around how to interpret what the best interests of the child are and how to use best interests to frame medical decisions. In most cases the medical team and families agree on the best path forward for the child. However, clinicians also highlighted how the child’s best interests can sometimes be interpreted differently by medical teams and parents.

For example, one clinician highlighted parental ability to access information on alternative treatments that are unproven and how it can make it difficult to agree on a specific pathway of care that is in the best interests of a child:

“They often make…. decisions that they [the parents] think are in their child’s best interests, and we have terrible conflicts or difficulties trying to get back to an agreed pathway of care…. And if we are meant to be holistically looking after children, we should be able to do that without having to take that burden home” (Clinician, Ireland)

Another clinician mentioned the emotionality of the situation for parents and questioned if parents can be in a position to consider the best interests of the child objectively:

“I’ve seen very very few parents being so strong and determined to say “okay please, now…stop doing anything because this is only prolongation of his suffering in this life”. [Clinician, Ireland]

This highlights a few ways in which it can be difficult to form a consensus between families and clinicians on the child’s best interests.

The best interests of the child are a paramount consideration in circumstances where a matter regarding the withdrawal or commencement of life-sustaining treatment is brought before the court. It is a key principle in disputes relating to State intervention. The Court In Re JJ [2021] IESC 1 acknowledged that Article 42 A.4 provides that the best interests of the child shall be the paramount consideration where proceedings are brought to uphold the safety and welfare of any child. The Court held that the test to be applied in considering whether the decision could be said to be in the child’s best interests was to consider what loving and considerate parents would do once apprised of all the relevant information:

Such a parent would take into account the views of the child, if expressed, and the character of the child, and would make a decision as to the best interests of the child in that context. It is important that, while an assessment of the benefits and burdens of a treatment are relevant to the decision, that does not involve the courts making judgments as to the quality of the life being lived by the patient. [2021] IESC 1, para 176

In this case the Supreme Court reached the conclusion that the parents’ refusal to consent to a hospital treatment plan for their son constituted a failure of duty within the meaning of Article 42 A. Consequently, the pain and suffering that the child would have experienced meant that it took this matter beyond the autonomy that is afforded to families to make decisions for their children that run contrary to the body of medical opinion. It was therefore not in the child’s best interests for the court to refuse to grant the orders sought by the hospital.

The evidence outlined in this paper highlights how decision-making for children requiring LSMT is conducted within the legal and medical environment in Ireland. It shows that there is no simple formula that can be used to reach a decision, and that there are many factors that need to be taken into consideration before a decision is final [2].

The evidence gathered from clinicians based in Ireland reflects the challenging position they are in as they try to balance the interests of the individual patient, in this case a child alongside their family’s interests, and the interests of the wider society [33]. To further complicate this process the best interests of the child are interlinked with the best interests of the family, making it challenging to deliver a true shared decision-making approach [33,34,35]. It is evident from some of the clinicians’ comments how conflicting this position can be with clinicians highlighting the important role and autonomy of the family but also sometimes sharing views that seem to advocate for a more paternalistic approach to decision-making at times. Shared decision-making is a critical part of medical professionalism, and it is encouraged in Irish professional guidelines that decisions are shared between the clinician and patient with the goals of providing the patient with the most effective treatment that is in his or her interests [20, 33]. Generally, having a good therapeutic relationship with the patient and family empowers clinicians to act in the best interests of the patient. As promoting the family’s best interests indirectly promotes the child’s, with parents assumed to be in the best position to know the interests of their own child [34, 35]. However, as the literature indicates a shared decision-making approach does not offer a panacea and, where decisional discord is experienced, the legal context is often key [36].

The case law findings highlight the guidelines and laws in place in Ireland that recognise the views and rights of the child in terms of healthcare decision-making. These challenging discussions and decisions around medical decision-making are navigated differently depending on the country, legal framework, healthcare system, cultural background, and views of clinicians and parents. A common thread within this study was the sense of responsibility of clinicians, and their role within the decision-making process. It is evident that they are a key influence, and the small number of court cases (n = 5) highlights that disagreement or conflict between parents and clinicians is managed at a local level rather than requiring judicial intervention. Overall, this evidence highlights the key role clinicians play when it comes to making life-altering medical decisions for children within the medical and legal environment, as their advice, status and input heavily influences the views of parents and legal proceedings.

As part of a wider study, the interviews in this analysis were limited to clinicians who participated formally or informally on bioethics committees. In a clinical setting important decisions for patients and families are often made through multidisciplinary meetings, commonly without consultation with a formal bioethics committee. However, the authors acknowledge that the experiences of the clinicians here focus on a small range of cases and, with the small sample size involved, the generalisability of these findings are limited.

Nevertheless, it is clear that the responsibility weighs heavy on clinicians, especially within the shared decision-making approach and legal clarity on participation rights of young people is required. Continuous support and training for all clinicians working with children in children’s rights and best interests is also essential [13, 18, 37,38,39]. More research is also needed into developing a standardised tool for healthcare professionals universally to assess competency in pediatric patients, as these are currently specific to the regulations and guidelines of a certain country [8]. As children move into adolescence their need to develop autonomy increases, therefore it is important to try and incorporate this from a young age [40]. It is critical that there is a meaningful partnership created between clinicians, parents/legal guardians and the child when making life-altering medical choices so that child participation in the shared-decision-making process is adequately supported [7, 13, 37].

CPAP:

Continuous Positive Airway Pressure

EU:

European Union

GDPR:

General Data Protection Regulation

LSMT:

Life-Sustaining Medical Treatment

PICU:

Pediatric Intensive Care Unit

UNCRC:

United Nations Convention on the Rights of the Child

US:

United States

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MB designed the overall TechChild project. MB, LC and JL designed this component of the project. MB, LC and JL wrote the initial draft of the paper, with input from all of the other authors listed. All authors listed read and approved the final manuscript.

Correspondence to M. Brenner.

Ethical approval was granted from the Health Sciences Faculty Health Research Review Board of the host institution, Trinity College Dublin (reference number: 190102) and the study was performed in line with all ethical guidelines, and with the European Union (EU) General Data Protection Regulation (GDPR) requirements. Informed consent was obtained from all participants included in this study. The interview data used in this study has previously been published [24]. The study adhered to the Declaration of Helsinki.

All authors have consented to this publication.

The authors declare no competing interests.

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