Already nearly two decades ago, in a national and regional context of increasing immigration, the Meyer University Children’s Hospital took steps to respond to the health needs of migrant children and their families, particularly by ensuring appropriate information.

The hospital introduced cultural and language mediation in different languages (including Albanian, Arabic, Chinese, Romanian, Somali, French, English, Spanish, Polish, Czech, Slovak, Macedonian, Serbo- Croatian, German and Filipino). An interpretation service was also made available via telephone, used especially in cases of emergency. 

Upon suggestion from the hospital staff, a SOS Intercultural Team was set up. This group was composed of professionals working in the hospital with language competence in 10 different languages (Albanian, Arabic, Bulgarian, French, English, Iranian, Romanian, Spanish, German and Hungarian). This team did not substitute the formal cultural and language mediation services, but provided an emergency substitute, face-to-face or by telephone.

To ensure the respect for the spiritual and cultural dimensions of health, the hospital undertook the dissemination of the contacts of the religious entities present in the region in all departments and services. It also established a protocol between the hospital and religious communities to ensure the necessary religious assistance to the patients of migrant background and it prepared of ‘Intercultural’ Calendars, which were disseminated in every department and service to increase awareness of the main religious events. The hospital also provided ‘free and flexible’ menus, which were translated into different languages, in order to guarantee, as much as possible, the respect of the different cultural and social eating habits.

 Read more: Ensuring the Right of Migrant Children to health Care: The Response of Hospitals and Health Services, Background Paper, International Organization for Migration (IOM), 2009, pp.32-33 (https://www.researchgate.net/publication/301682535_Ensuring_the_right_of_migrant_children_to_healthcare_the_response_of_hospitals_and_health_services )

Transcultural mediation services were established at Necker Children’s Hospital in January 2014. They were set up with a view to helping medical teams deal with issues of therapeutic blockages or non-adherence to treatment, particularly when cultural elements appear to be a determining factor.

They started off as a pilot project in Paris and resulted from a collaboration between the Centre BABEL and the child psychiatry departments of Necker and Cochin Hospitals.

Transcultural mediation helps medical teams better understand patients' problems by considering them within their cultural context. In hospital environments that are increasingly concerned with cultural diversity, transcultural mediation helps to establish a dialogue between different worlds, that don't necessarily speak the same language and have very different codes.

Thanks to this dialogue, the patient will be able to better understand what is implied by the medical intervention, which can help avoid misunderstandings that can be detrimental to the patient's care. For their part, caregivers will adapt care plans taking into account the significance of the disease in the patient's life.

 Centre Babel (in French)

Disagreements may arise in situations where no procedure as such is involved,such as in areas of information-giving. For example, a child may wish to take part in a health survey or needs assessment, and the parents may disagree.

 In such circumstances, any reasons for parental reluctance should be explored and where possible, any unfounded fears met with reassurance where possible (for example about how information is used or how data is stored). However, when assessing ‘best interests’, health professionals also need to remain objective and open to the possibility that in some circumstances (for example, violence in the home), parents may seek to block their child from disclosing concerns and needs; in which case the child’s ‘best interests’ may lie in advocating internally for a way to enable this child to participate, assuming this is possible within the legal framework of the country. 

In primary healthcare, immunisation can also be a controversial issue within some families. In primary health care, immunisation can also be a controversial issue within some families, and it is not uncommon for children or adolescents to want a vaccination and the parent be reluctant, for example for COVID-19 or for HPV. 

This can reflect parents’ own concerns and sometimes be the result of misunderstanding or misinformation. Providing accurate and clear information about the purpose of the intervention is important and can be reassuring and helpful, ensuring that this is objective and not directive. Similarly, explaining to parents about the rights that their child has and why these are important can be helpful, as parents are sometimes not aware of these or may be sceptical. Sometimes, moral, religious or cultural beliefs contribute to conflict around medical decisions. Such concerns should be identified and addressed in a respectful manner as early as possible and discussions should be truthful and transparent, always assuming that the primary focus of decision-making remains the child patient’s best interests. Getting the support and mediation of a trusted religious or community leader where available, can be helpful (CoughlinKevin W. Coughlin, Medical decision-making in paediatrics: Infancy to adolescence, Canadian Paediatric Society, Bioethics Committee, Ottawa, Ontario).

In situations requiring urgent decisions or actions, such as procedures to insert an intravenous cannula to give medicines to treat a serious infection or take blood for an important test, it is not uncommon for children to initially refuse or not to want this, particularly being young.

In such circumstances, the conclusion may be non-negotiable and that it is in the child’s best interests to have the treatment. However, this should be explained kindly and carefully to the child concerned, and the child concerned should still be given choices that enable some sense of control and influence on other elements of the care provided, such as sitting position, which arm/hand is used, etc. It is also important to choose the least intrusive treatments possible and to seek alternatives that would be acceptable to the child.

Differing views may also arise in situations relating to sexual and reproductive issues. For example if an adolescent seeks advice or healthcare in relation to concerns about a sexually transmitted disease and does not wish to tell their parents.

 The child's right to confidentiality and access to counselling is important and should be respected. In such circumstances, health professionals may encourage children to open up to their parent(s) and offer support and mediation between the child and the parent(s) if necessary. In parallel, health professionals also have a duty to assess the circumstances to consider if the child is in an abusive situation and needs protection, or if the child's mental and physical wellbeing is at risk. These and other factors need to be balanced by health professionals in determining the 'best interests' of the child and whether parents should be informed.

There are some situations where the focus of disagreements has particularly serious implications, for example, disagreements between children and parents or health professionals about whether to continue active treatment or interventions when there is little hope of recovery (maybe in the case of continuing treatment for cancer, after previous treatments have failed).

In such cases proposed intervention should be delayed while an attempt at resolution is made. Such situations are always very emotive and health professionals should be compassionate but objective in supporting every effort to understand and respect differences of opinion between the children and their parents/legally designated representative. Objections from children, capable of forming an opinion, should be advocated for and respected; and the opinion of legal representatives should be taken into account in interpreting the wishes of children.

The French Ministry of Health has issued guidelines for helping health professionals deal with instances when the child refuses, and when the parent(s) or holder(s) of parental authority refuse(s) an intervention. It also tackles the specific situation when there is an opposition to blood transfusion. The guidelines are in line with national legislation. They distinguish between emergency and non-urgent situations.

Unofficial translation

  2-4-Refusal of care expressed by the minor

The minor's participation in the decision and the collection of his or her point of view cannot take precedence over the decision of the holders of parental authority.

Minors may not refuse hospitalisation.

When a minor expresses a refusal out of weariness, fear of pain or even in the event of irreversible consequences, appropriate dialogue will be required. The medical team, in conjunction with the family, should try to convince the minor.

When the medical acts performed on the minor are not necessary for his or her health, the child has a right of veto prohibiting the holders of parental authority from imposing the act in question. This applies to bone marrow collection for the benefit of a family member or participation in biomedical research.

2-5-Refusal of care expressed by one or more holders of parental authority

It may happen that the parents or legal representatives of minors object to treatment or surgery being carried out or that they decide to take the child out of the health establishment against the advice of the doctors.

The question is to what extent hospital staff can intervene to protect the child against the parents' wishes.

The law states that the doctor must respect the parents' wishes after having informed them of the consequences of their choice.

When the health or physical integrity of the minor is in danger of being compromised by the refusal of the minor's legal representative or the impossibility of obtaining the latter's consent, the doctor must inform the doctor in charge of the service who may refer the matter to the public prosecutor in order to initiate educational assistance measures enabling him or her to provide the necessary care.

In the event of extreme urgency, the law requires the doctor to provide essential care, i.e. that which will protect the young patient from serious consequences for his health. In this case, the doctor will decide to intervene after consulting another doctor and will then draw up a certificate of the urgency of the situation, without waiting for an educational assistance measure from the public prosecutor.

In the absence of an emergency, if the parents or legal representative refuse to sign the authorisation for care or if their consent cannot be obtained, no act of care can be carried out, they must sign a certificate of refusal of care. The parents may avail themselves of the provisions of the Public Health Code when the care does not significantly affect the minor's state of health or if the abstention from care is in keeping with the family's cultural background and its own health beliefs.

If there is no emergency but the medical or surgical procedure is essential, the doctor must inform the director who will alert the public prosecutor so that an educational assistance measure can be taken. The duty public prosecutor should be contacted.

• The doctor should mention in the medical file the need for the treatment, the proportionality of the procedure, the impossibility of obtaining the agreement of the holders of parental authority and the means used to change their minds.
• The decision to operate must be signed by the doctor and co-signed by a representative of the hospital administration or by a doctor with no hierarchical link (check feasibility)

2-6-The case of refusal of blood transfusion

In case of emergency, the parents must be informed of the risk to the child if he/she is not transfused.

If the opposition persists, an educational assistance procedure must be initiated by the public prosecutor's office to lift parental authority.

The doctor then takes the decision to transfuse the child because of the urgency of the situation. If the blood transfusion is not essential for the child's survival and the parents or legal representative refuse it, they must sign a certificate of refusal of care. 

 Fiche n°3: Information et consentement aux soins d’un mineur - Direction générale de l'offre de soins (DGOS) -ONVS Observatoire nationale des violences en milieu de santé (in French only)

The purpose of Clinical Ethics consultancy is to identify, analyse and propose solutions to ethical problems and conflicts that arise in patient care. 

There were 12 cases involving children brought to the attention of the Committee in 202, 15 cases in 2022, and 11 cases between January and July 2023. The numbers include all the ethical consultancy of Bioethics Resource some of which were discussed and evaluated together with the Committee.

Clinical cases are analyzed using four criteria: 1. Indications for medical intervention: what is the medical problem and how can it be solved; 2. Patient preferences: what the parents want and, when the child can express himself, what the patient prefers; 3. Quality of life: compared to the present conditions, how can the future life of the patient be improved; 4. Contextual aspects: for example the needs of siblings, closeness or distance from the hospital, economic or social problems.

The main and frequent ethical questions raised to the Bioethics Resource and to the Committee of Ethics concerns therapeutic obstinacy. Above all in paediatrics, clinical persistence and experimental obstinacy are often practiced because almost instinctively, even at the request of parents (due to understandable emotional feelings), the physician is inclined to do as the parents wish and do everything possible (both pharmacologically and technologically) to preserve the child’s life, without considering the negative effects in terms of outcomes and further pain and suffering. Sometimes, clinical persistence is consciously practiced as a defence against any possible accusations of failure to provide medical assistance or active interruption of care or life-sustaining treatments (the so called ‘defensive medicine’). In the majority of cases, clinical persistence is accompanied by the use of often sophisticated technologies. For this reason, the term "clinical persistence" is also associated with "technological obstinacy". Issues involving clinical persistence in paediatrics need to be addressed on a case by case analysis which takes into account the specific circumstances prevailing in the different concrete realities:  An increase of these situations is foreseeable in paediatrics environment given the rapid developments in science and technology.

The main ‘lessons learnt’ in the Committee in this context are the following:

In the first place, the need for the identification of clinical obstinacy through scientific and medical elements that describe the patient's clinical condition, as in paediatrics the subjective elements that refer to the patient's experience are often lacking. In the case of children, there is a lack of a sufficiently conscious participation in the choice, as they may not be able to express themselves because of their age or immaturity, or in any case be in a condition incompatible with autonomy or full awareness. The description of the clinical condition is necessary in order to justify a possible gradual suspension of an ongoing medical treatment in children with a negative prognosis and in conditions of limited life expectancy, excluding any reasonable possibility of recovery and improvement of the clinical conditions, but only increasing the pain and suffering of the child. The reality is often even more complex: some children do not have a diagnosis (as, for example, is the  case  with rare diseases); others have a diagnosis but not a prognosis. It should always be considered that  in children the unpredictability of the evolution of the clinical framework calls for  special attention in careful consideration of each term used  ; even the reference to "incurability" is dynamic, revisable in relation to the evaluation moment by moment of the evolution of the pathology, of the rapid progress of medical science; even more so with the expressions 'terminality' or 'imminence of death' which are temporally and clinically vague given the prognostic difficulty. And even pain and suffering are not easily detectable and still difficult to measure above all in children. The best interest of the child should be the inspiring criterion in the situation and should be defined starting from the contingent clinical condition. Doctors should avoid implementing ineffective and disproportionate clinical pathways only in order to comply with parental requests and/or to meet defensive medicine criteria. The Committee helps doctors and parents (often through hearings and direct dialogue during meetings) to base their reflection on the best interest of the child.

A second important element is communication. The decision of the medical team should necessarily be made by involving the parents in the cure and care of the children, devoting particular attention to the empathic understanding of the dramatic situation that the parents are facing and guaranteeing them time and space in communication. Information to parents should be provided by a multi-specialist medical team, of variable composition in relation to the typology of the child's illness, the examination of the possible clinical implications associated with it, the risks and benefits of treatments and their burden. It should be kept in mind that the information cannot always have clear and definitive contents, given the complexity, uncertainty and unpredictability of the condition. However, the information should be continuous for the duration of the entire therapeutic process, also through the elaboration of shared treatment plans or decisions, according to the evolution of the child's conditions in the context of a care relationship, which contributes to the construction of a climate of trust between doctors and family. Often in the process psychologists need to be involved to support  both the parents and the children. The quality of life of both the children and parents should be considered,  as well as the context (cultural, socio-demographic conditions).

A third element is the need to implement the training of doctor and healthcare personnel, to create a core group of professionals (together with social workers, psychologists, bioethics experts, family associations) able to support parents on an emotional and practical level and accompany them in the difficult path given by the conditions of illness and vulnerability of the child in extremely precarious clinical conditions. There should also be recognition of the important role of the Associations of the parents of sick children in order to consolidate the networks for joint support from parents and from society itself.

 https://www.ospedalebambinogesu.it/etica-clinica-in-pediatria-89876/

Sparadrap (which literally translates into “Band-aid” or plaster) advocates for the rights of children in healthcare and refers to itself as the "Association to help children feel less fear and pain during care and in hospital". 
The association's mission is: 1) to inform, advise and prepare children for any situation involving care, medical examinations, medical visits and hospitalization, and to support their families in this regard; 2) to take part in prevention campaigns aimed at children and adolescents; 3) to raise awareness and provide training to healthcare and childcare professionals to help organizations and practices evolve towards greater respect for children's needs; 4) to promote better pain management of children; 5) to promote the presence of family and friends when children are being cared for or hospitalized.

The association issued guidance on child restraint, meant for practitioners. It aims to have them reflect on and question the use of restraint in their day-to-day practice and suggests alternatives for avoiding or limiting the use of restraint. Such strategies include, for example: using analgesia to limit pain induction, getting the child settled and positioning them in a way that helps (semi-seated position vs laying down), anticipating the procedure by informing and discussing beforehand, distracting the child’s attention, pausing during the intervention, asking the child to reproduce the carer’s actions on a doll, etc.

 Sparadrap | Alternatives to restraint or physical holding (in French)