Each year, between 900 and 1500 children and adolescents die in Spain. Although infant mortality has decreased, the prevalence of incurable diseases and disabilities has increased. In the first year of life, congenital malformations, deformities, and chromosomal abnormalities are the most common causes of death. Patients with these conditions are the most likely to receive paediatric palliative care (PPC). After the first year, cancer and neurodegenerative diseases are the most common causes of death.1

In 2002, the World Health Organisation defined PPC as “active total care of children's body, mind and spirit, including support for the family. It begins when a life-threatening illness is diagnosed and continues regardless of whether or not children receive treatment for the illness itself, without being exclusive”.2 The aim of PPC is to improve the quality of life of children, adolescents, and their families when no treatment can substantially alter the course of the illness.2 The aim of PPC is not to cure, but rather to provide care that maximises the patient's well-being.3

The symptoms experienced by PPC patients are wide-ranging and varied. Pain is the most common symptom, causing the greatest levels of anxiety in children, their families, and those around them. It has been estimated that more than 70% of PPC patients experience some degree of moderate to severe discomfort, which reduces their quality of life.4 When addressing physical suffering in children and adolescents, the goal should always be to improve their quality of life by taking into account their emotional, family, and spiritual needs. In many cases, achieving complete pain relief is effectively impossible. Thus, the goal is to maximise well-being, while balancing symptomatic pain control with the adverse effects of the drugs used.5,6

The most common ethical problems in PPC are related to the process of making end-of-life decisions. This is a complex issue because, in most cases, children cannot act independently, so their parents or guardians act as their representatives.7 In this context, children are at the centre of all decisions, with the goal of choosing the option that will be the most beneficial.8 Both families and healthcare professionals play a key role in empowering children and encouraging their participation in matters related to their health. Another relevant ethical dilemma in the field of PPC concerns the communication of bad news.9 These ethical issues can be addressed by applying the 4 principles of clinical bioethics: autonomy, beneficence, nonmaleficence, and justice. These principles provide both a structured approach and a solid basis for analysing the moral aspects of clinical decisions relating to pain management in children.10

In recent years, the paradigm of paediatric healthcare has shifted from a model focussing solely on protecting minors to one that progressively recognises their rights according to their level of maturity and understanding.7 This change directly affects how sensitive clinical decisions are approached, such as those related to pain management in the terminal stage, where numerous ethical dilemmas arise. Given this background, this study aimed to analyse the ethical aspects of pain management for paediatric patients in terminal situations, drawing on the fundamental principles of clinical bioethics.

The literature search yielded 244 articles, of which 18 met the inclusion criteria, as shown in the PRISMA flow diagram (Fig. 1).

Figure 1.

PRISMA flow diagram.

Table 2 summarises the main characteristics of the articles included in this systematic review.

The ethical aspects of pain management for terminally ill paediatric patients were analysed according to the 4 fundamental principles of bioethics.

This systematic review reveals how the fundamental principles of clinical bioethics are applied to the management of pain in terminally ill paediatric patients. In the studies analysed, these principles were reflected with varying degrees of emphasis and interpretation, depending on the clinical, cultural, and organisational context.

The principle of autonomy appeared to be mainly associated with shared decision-making between healthcare professionals and families. Although the importance of involving children in this process has been emphasised—adapting their participation to their developmental level and capacity for understanding—the32,33 studies analysed show that such involvement usually occurs indirectly, mediated by parents or carers. Some studies also found that shared decision-making was hindered by cultural and communication barriers, which have been widely documented in the scientific literature.34,35

The principles of beneficence and nonmaleficence were primarily evident in the tension between the duty to alleviate suffering and the fear of causing adverse effects or hastening the process of death. This ethical dilemma was particularly relevant in managing pain in terminally ill children, where the administration of potent analgesics, such as opioids, can raise concerns about the risk of respiratory depression or excessive sedation.36,37

Several of the included studies highlighted situations in which a lack of specific PPC training and clear protocols led to suboptimal pain treatment administration, thus compromising the principle of beneficence.14,19,31 Such shortcomings have also been noted in the wider literature, where insufficient professional training is recognised as one of the main barriers to effective pain management.38 These authors emphasised that a lack of training is often associated with a sense of insecurity when facing complex conversations, as well as difficulties in identifying refractory symptoms.

On the other hand, the principle of nonmaleficence may be compromised in situations when treatments that offer little clinical benefit are continued, thereby exacerbating the patient's suffering. Although not a central finding in all the included studies, some described the difficulty of limiting prolonged medical interventions due to caregiver refusal.26 The literature has acknowledged that this type of clinical decision can be problematic and has warned against therapeutic obstinacy in contexts of high uncertainty or emotional pressure.39,40

The principle of justice was mainly reflected in the identification of structural barriers hindering equitable access to analgesic treatments and specialised PPC. Some authors observed that shortages of opioids, coupled with certain cultural factors, can hinder access to appropriate care, particularly in settings with limited resources.19,27 Such inequalities have been widely documented in recent literature, which warns of inequity in access to PPC based on geographical location, socioeconomic status, or availability of care resources.41,42

This study has a number of limitations. Firstly, the limited availability of publications related to palliative care in the paediatric population made it difficult to find results that answered the objectives of this study. Furthermore, the sample size of the included studies was generally small, except for studies that took into account the perceptions of healthcare professionals. Finally, the broad eligibility period of the included studies may have introduced variability in the obtained results due to changes in PPC over the years.

The study's strengths include the use of the PEO12 model, which enabled the research question to be defined clearly and the review process to be structured. It addressed a clinically and ethically complex issue through a structured framework, using the 4 principles of bioethics to guide the analysis. In addition, the inclusion of both quantitative and qualitative studies enriched the interpretation of the results by integrating objective data with the experiences and perceptions of patients, families, and professionals. In this regard, the small sample sizes of some qualitative studies do not represent a significant methodological limitation, as these types of designs typically yield sufficient information from a limited number of participants.

In conclusion, the fundamental principles of bioethics are applied to pain management for terminally ill paediatric patients, albeit with varying degrees of development and application. Although shared decision-making with families is a central ethical principle, the direct participation of children was scarce or non-existent. There are frequent tensions between the obligation to alleviate suffering and the fear of causing adverse effects through the use of opioids or deep sedation. In addition, structural, training, and organisational barriers that hinder equitable access to PPC persist. These results highlight the need to improve specific PPC training, establish clear action protocols, and foster clinical environments that facilitate communication with families and, where possible, the patients. A structured ethical approach is essential for guiding complex clinical decisions and ensuring that care focuses on the best interests of the children.

This systematic review applies the fundamental principles of clinical bioethics to provide an update on the ethical dilemmas in pain treatment for children receiving paediatric palliative care. The study identifies the key barriers to providing ethical and appropriate care by integrating the available evidence and considering the perceptions of both professionals and families.

Both authors contributed substantially to the study conception and design, data analysis and interpretation, and writing the article. Both read and approved this version of the manuscript. Specifically, Cristina Casanova Martínez: study design, data collection, interpretation of results, and writing the article. Mónica Gayoso Rey: interpretation of results, and writing and revision of the article.

None declared.

Cristina Casanova-Martínez: Writing – original draft, Validation, Methodology, Investigation, Data curation, Conceptualization. Mónica Gayoso-Rey: Writing – original draft, Validation, Methodology, Formal analysis.