Gunilla Klingberg, Ivar Espelid, and Johanna Norderyd
Ethical aspects in pediatric dentistry start right there in the clinic with the child patient we meet as dentists, the child patient that we should be able to communicate with, and to whom we are responsible for providing dental treatment and oral health based on best available scientific knowledge in combination with clinical understanding and experience, and taking the patient’s point of view into consideration. Thus, apart from the professional ethical codes we have to adhere to, ethics in the context of pediatric dentistry very much concerns how we look upon children as individuals and as patients. Through history society has viewed the child as an individual and as a person very differently. The status of the child in family, society, and health care institutions has varied a lot over the years, and there are still differences depending on culture and social structure. Our comprehension of the child today is very much influenced by our understanding of the child’s competencies in terms of psychological development, language, and communication skills (covered in Chapter 3) as well as new ways of reasoning about ethical and moral issues.
One important aspect in this is of course the Convention on the Rights of the Child , originating in 1989 and now ratified by the majority of nations worldwide. The Convention is founded on 54 articles, and articles 2, 3, 6, and 12 are usually identified as of major importance. The Convention applies to children and adolescents below the age of 18 and states that children actually have rights (defined in Article 1). This is essential and really the basis for understanding the Convention. Thus, the child has the right to life and development, should be listened to, be respected as a person and a human being, be protected against health hazards, discrimination, punishment etc. (Articles 2 and 6). In order to fulfill this, the child has the right to be involved in decisions affecting him or her and the child’s points of view should be respected, taking the child’s age and maturity into consideration (Article 12).
Article 3 declares one of the most important principles in the Convention, namely, the best interest of the child. The best interest of the child should always be a primary consideration in all situations and decisions where children are involved. In the dental health care situation this means that the organization and planning of dental care for children, including competency and number of staff, should be founded on the best interest of the child. So in order to fulfill this, we as dentists should have knowledge and competency regarding children and adolescents. We should know about physical as well as psychological development, be skilled in communication with children and their families, we should be orientated on how children spend their days, about school, culture, and social aspects related to the daily lives of children. This may sound pretentious, but is more a matter of having an authentic interest in children and adolescents.
The UN Convention on the Rights of the Child has impacted on the health care sector and how medical and dental care for children is organized and provided (e.g., [2,3]). Today, the child has a stronger position and her/his voice is not just listened to, but also often asked for when deciding about medical treatment and care [4,5].
Ethical considerations and analyses have become an important part of the clinical work of dentists, especially when working with patients who need extra attention in order to ensure that their viewpoints are recognized. There are several philosophical alignments that can be helpful. In this chapter we will focus on biomedical ethics. In the 1970s Thomas Beauchamp and James Childress published the textbook Principles of Biomedical Ethics, which has since appeared in several new editions ), which has been very influential in medical care [7–9]. The authors described different ethical principles of which four were considered central. These are often called the Georgetown mantra after the institution, Georgetown University in Washington DC. The four values are the principles of autonomy, non‐maleficence, beneficence, and justice.
According to the principle of autonomy the person should have the right to decide about matters of concern to her/him for as long as possible. But at the same time, the person should also respect the autonomy of others. In order to be able to make adequate decisions the person needs good, thorough, and understandable information from the dentist about the actual diagnosis and possible treatment. This is a prerequisite for the person’s/patient’s decision‐making. Corollary, the person/patient always has the right to reject a treatment provided she/he is competent to decide about this, but cannot demand a certain treatment as all treatment should be provided according to the principle of lege artis, i.e., according to the law of medical art, based on scientific evidence and performed the correct way. The treatment is delivered by someone, and if that professional, e.g., the dentist, does not agree with a treatment demanded by a patient he/she is not obliged to carry it out.
Non‐maleficence is an old and well‐recognized principle that goes back as far as to Hippocratic Oath, that we should not harm a patient. At first glance, this might be considered easy, but it is not always so. For example, some dental treatments are painful, and from the perspective of non‐maleficence they might therefore be on the borderline according to this principle. Still they are carried out, just to mention a few potentially painful treatment situations: the risk of procedural pain when having an injection of local analgesia, or pocket probing. This is not necessarily in contradiction to the principle provided that the patient (or her/his advocate) has supported it by giving informed consent and that the treatment is good and promotes health. For obvious reasons it is, however, important that the dentist always tries to minimize the risk of pain and discomfort. Local analgesics, general analgesics, sedation and most of all an empathic attitude in meeting and caring for patients are essential in this context. It is never right to carry out a treatment that causes pain and discomfort without trying to minimize the harm for the patient unless the situation is more or less life threatening, which is rarely the case in dentistry.
The principle of beneficence has a very strong position in all health care. It is in the interest and good of the patient as well as society, and concerns the idea of ensuring that we deliver effective and good treatment. Dentistry is developing fast, and new methods and materials are frequently launched onto the market, but very few of them are fully evaluated from a scientific point of view. Again the idea of working according to lege artis is present here. Knowledge about how to evaluate and use scientific results in a systematic way, such as evidence‐based methodology for evaluation of dental treatment, is one way of ensuring that we work according to the principle of beneficence. We have a responsibility as professionals to be updated on dentistry, but also to be critical of new methods until we are convinced that they are good.
The principle of justice states that every person should have the same and equal right to access the same kind of dental care and treatment regardless of age, gender, social position, education, ethnic background, religion, and so on. For obvious reasons this principle may be hard to abide by in societies where there is a shortage of dental care as well as of finances. Still, society has a responsibility to strive for an equal possibility to achieve good oral health for the whole population. Especially important for society is to ensure that there are facilities for delivering dental care to vulnerable groups of patients, e.g., children, elderly, and patients with disabilities, or those who are medically compromised.
Informed consent—from the perspective of pediatric dentistry
Historically, culture has allowed medical professionals such as doctors and dentists to have absolute authority in the health care situation. They have seldom been questioned or criticized; their word and opinion have been readily accepted by patients as well as by society. This paternalistic apperception that “the doctor knows what is best”‘ is now being questioned and replaced by the idea of the patient having much more to say about her/his own treatment. Today’s patient has a strong position in all health care. Still, it is important to keep in mind that there are cultural differences between countries, and also between different parts of a population owing to age, religion, ethnicity, and so on. Treating children and adolescents is different from treating adults . There is a triangle of people involved in the dental treatment—first of all, the young patient, then also the parent, and the dentist (see also Chapter 6).
An adult, competent person is usually able to decide for her/himself. The respect for a person’s autonomy usually has priority over the principle of beneficence when treating adults. Children, however, are not free‐standing agents; they belong to a social unit in which parents usually make the final decisions. Often both parents and dentists are willing to subordinate respect for the child’s autonomy to the value of the child’s benefit. Thus, if a certain treatment is considered essential and beneficial for the child, parents and dentists may see this as the most important aspect when deciding about treatment. The child’s autonomy is often looked upon and weighed differently than that of an adult patient. That is why communication is important. If the dentist is able to describe to the child what needs to be done, why and how, the child will be able to take part in the decision‐making and the dentist can in fact receive an informed consent from the young patient. But the information must be age appropriate and the child must feel safe and comfortable in the situation.
Integrity and autonomy
Integrity can be described as the right of a person to have an area protected against intrusion, i.e., a private sphere or space where human dignity is central. Every person or human being has integrity (or dignity), as it is present right from birth, but it can be transgressed by others. Other people can step into this private sphere without respect for the person, thereby violating integrity. An example from the dental care situation is when you have a child patient and you do not meet and confirm that child as an important person. Maybe you simply forget the child because of encountering a parent who demands attention. This is easily done if you are not observant of your own behavior and fail to remember that the child is your patient and therefore should be your main concern. It is sometimes a delicate balancing act to clarify for the parent that the child is the patient and thus the individual to acknowledge and communicate with in order to respect integrity, while at the same time maintaining a respectful attitude towards the parent.
By autonomy we mean the right of a person to decide about her/himself, to be a competent person. Autonomy in the dental care situation allows the patient to decide if she/he wants to go through with a treatment or not. Autonomy also serves as a shield protecting the person’s integrity. In contrast to integrity, autonomy is not always present; it has to be won, and it can be lost (Figure 27.1). The newborn child cannot exercise autonomy; instead, autonomy is gradually gained as the child develops and grows older. There is a need for a certain level of reasoning in order to uphold autonomy. The very young child is not yet capable of this, nor is the old or very ill or dying person. Moreover, autonomy can be temporarily lost, e.g., when a person is under general anesthesia, and it can be reduced or undermined by illness, disability and so on. Autonomy can also be violated by others. For example, if we carry out dental treatment that the patient has not given consent to or agreed to, we as dental health care professionals are trespassing and violating the autonomy of this individual.
Figure 27.1 The level of autonomy varies throughout life depending on the individual’s capacity, while integrity remains complete during the whole lifespan. The graph depicts how autonomy varies depending on the situation.
So how can we then assure that we do not trespass when we have a young child in the dental chair? We have to make sure that there is another person present functioning as advocate for the child . Thus, a person who substitutes autonomy and provides proxy consent for the child should be identified. This person is often the parent or legal caretaker. Some countries have regulated this in legislation. But as dentists working with children we also have an obligation to not take for granted that the parent is automatically the best proxy for the child. The person substituting autonomy must take the full perspective of the child when giving consent and deciding about treatment. This includes asking her/himself what the child would think about this if he or she were able to fully understand. Most parents are very good at this, but there can be conflicts of interests. For example, a parent might prefer a treatment that is quicker even though it is not in the best interest of the child. Therefore, the dentist should not only be aware of this, but also be prepared to act as advocate for the child (or other patients with decreased autonomy) in decisions about treatment. The treatment, as well as the modes of treatment, should be in the best interest of the child.
Deciding on treatment
Sometimes there is conflict between different ethical principles, for example the non‐cooperative child that has a cavity requiring filling therapy but who is not willing to go through with treatment. Here is a potential conflict between autonomy and beneficence. When there is conflict between different principles, a rule of thumb often advocated is to settle for the treatment that is in the interest of the majority of principles and individuals involved. In many cases an ethical analysis will reveal that much treatment actually can be postponed. There is seldom, with a few exceptions, a need for immediate treatment and very rarely conditions that are life threatening in dental care . Instead, it is important that the treatment is beneficial to the child in a long‐term perspective, which is why it may often be wise to invest time in the patient by stepwise introduction to the treatment, or desensitization if the child is very anxious. If this is an alternative the dentist should of course make a decision taking into consideration the specific odontological diagnosis, the treatment needs, and consequences of postponing or refraining from treatment. If there is a situation where the dentist has to choose between two different treatment alternatives, the alternative that provides positive long‐term effects for the child should be given priority before an alternative that may be efficient in a shorter perspective, but counterproductive in a longer perspective. In most cases it is not necessary to rush to treatment. Instead, pausing, thinking it over, and analyzing possible ways of treatment is feasible and may in fact lead to a better future outcome.
It is hardly acceptable to push treatment in a direction where restraint is used just in order to carry out a simple treatment such as fissure sealant therapy, while an avulsed permanent central incisor in a young child could be a rather different situation. In the latter case an immediate replantation may be in the best interest of the child as the long‐term prognosis is correlated to more direct action. In this case it may, therefore, be more acceptable from an ethical point of view if treatment is carried out even though the child is protesting. The dentist should of course do everything to make it easier for the child to cope with the treatment. This should include prevention of pain and possibly also using sedation.
There are many clinical situations where ethical aspects could and should be discussed. Ethical discussions and analyses can constitute a normal and vital part of clinical conferences where clinical cases are discussed in order to improve diagnosis and decision‐making in relation to therapy. There are different tools that can be used in this process [12–14].
It is probably easiest to illustrate this using a clinical case, for example, the one in Box 27.1. The analysis weighs the perspectives of the different parties involved—John, John’s mother, the dentist, and society—on different ethical principles. Figure 27.2 gives an outline for this process. In this case the following principles should be discussed: respect for autonomy, beneficence–maleficence, and justice. To start with respect of autonomy—John’s wish and well‐being should be respected as far as possible. His experience of the dental treatment will probably affect future dental visits. If treatment is carried out against his will, this could give rise to dental anxiety and dental behavior management problems in the future (beneficence–maleficence). Mother’s wish is understandable, and normally she should stand in for her son’s autonomy. But in this situation it can be questioned if she is really reasoning and acting in the best interest of her son. Maybe her own stress is the ruling factor. From the dentist’s perspective a tooth extraction carried out against the will of a patient, and probably under conditions where pain control can be difficult, is far from optimal or desirable. Society would prefer a treatment that will cost as little as possible both financially and in terms of loss of health or well‐being.
Figure 27.2 Scheme for an ethical analysis. The ethical principles respect for autonomy, beneficence–maleficence, and justice should be discussed from different perspectives: that of the child, parents, dental team, and society. The analysis is made following the boxes from A to L starting with the perspective of the child and respect for autonomy in box A. Here the dentist assesses the pros and cons of carrying out a treatment or not and sums up the results in A. Thereafter beneficence–maleficence is assessed. After the perspective of the child, the dentist moves on to the perspective of the parents. Finally, all pros and cons are weighed together thereby giving a guide for decision‐making and treatment.
Modified from Nilstum et al. 2003 .
John is a healthy 6‐year‐old boy. He has never had any dental treatment. Now he turns up at the clinic with toothache from tooth number 54. A radiograph shows a large cavity in tooth 54 with apical periodontitis and there is an abscess on the buccal side of the tooth. An oral examination reveals a number of cavities, but none of them are causing any problem at the moment. John is upset, he did not sleep very well last night because of the pain, and he is afraid of any treatment causing more pain. When the dentist explains that the tooth has to be extracted he starts crying and refuses to cooperate. John’s mother is also tired after not sleeping so well and she has had to leave her job early in order to take John to the dentist. She demands that the tooth be extracted right away. She can’t miss one more day from her job, and she declares that she will not accept one more night at home with her son crying because of toothache. The ethical dilemma is—should treatment be carried out now, or not? Who should decide?
Beneficence–maleficence from John’s point of view has already been declared. For the mother it is a question of time, and probably she would be better off in this respect if the treatment is carried out right away. The dentist and the dental team will probably have difficulties carrying out the treatment in a good way under the immediate circumstances where John is in pain and unwilling to cooperate. Treating someone against their will is extremely stressful and not beneficial for the dentist or anyone else on the dental team from a professional point of view. Society would probably prefer a treatment that is positive for the individual in a long‐term perspective, i.e., not costly for a longer period of time.
Regarding justice, it is foremost the dentist and society who would have interest in this principle. Both parties have to exercise their financial responsibilities and try to plan for dental care that makes it possible for as many individuals as possible to gain access to dental care and to have equal possibilities for good oral health. Finally, when considering all aspects the most reasonable decision about treatment for John would be to postpone the extraction. There is more to win using this strategy. John will have time to elaborate on having the tooth extracted, he can have the kind of stepwise introduction to this treatment that is known to be beneficial to children, the dentist will be able to do a better and more self‐controlled extraction under calmer conditions, the risk of John developing dental anxiety that can be costly for society will be reduced. Mother is the only one here not having her wishes met. However, if time is spent on informing John and his mother, ensuring that analgesics are prescribed, and the next appointment is scheduled so John and his mother can actually come to the dental office better prepared, there will be a lot of benefits for everyone involved, including the mother. The treatment can be performed under sedation and the mother will experience her son being successful in coping with the treatment. This will also help John in the future as there are several dental appointments ahead before all his treatment needs are met.
Challenges in pediatric dentistry—meeting vulnerable children
Even though the majority of children live good lives in well‐functioning families, it is important that all health care professionals are aware that this is not always the case. Child abuse and the neglect of children is a reality for many children throughout society. It is important that dentists are familiar with signs indicating this and that they know how to report this to the authorities without delay. Abuse and neglect are covered in Chapter 26.
Sometimes parents are not fully capable of acting in the best interest if their child owing to problems of their own. Factors like parental dental anxiety or mental or physical health problems can make the parent incapable of taking the child to the dentist even though there is a need for dental treatment. This can be a form of neglect or borderline neglect if this hinders the child in receiving appropriate dental care. An example is described in Box 27.2, where parental fear of a specific medical procedure creates a difficult ethical problem. This is a delicate problem and as dentists we have to ask ourselves several questions: Can we prioritize the children’s oral health and also show respect to the parents’ fear? What will the consequences be if the dental treatment is not carried out?
There is a common understanding that it is important to keep children caries‐free if possible or to treat caries when it occurs. Jill and Anna are 4‐year‐old twins who live with their mother, father, and an older brother. A recent dental examination had revealed that there was indication for extraction of most Jill’s and Anna’s teeth due to severe caries. Nursery school teachers had also become aware that the twins’ eating problems probably were due to toothache because of poor dental health. They had encouraged the parents to seek dental care for the girls. The twins did not cooperate with dental treatment and because of their low age in combination with extensive dental treatment needs they were referred to the nearest hospital for extractions under general anesthesia. They were given two appointments, but did not show up at either of them. The parents explained that they were afraid the children would not survive the general anesthetic. They also refused any kind of sedation for their twins. How should the dental team handle this?
It is obvious in this case that the children’s general health was already affected as they had pain and problems when eating, a potential risk for malnutrition if left untreated. It can also be argued that infections should not be left untreated as they may in fact spread. The risk of odontological infections in relation to general health has been debated, but only a few years ago there was a case in a Scandinavian country where untreated oral infections originating from dental decay had lethal consequences. Despite great efforts the child did not receive adequate dental or medical care. In the background were complicating factors connected to social circumstances. Getting back to Jill and Anna, it is obvious that the dentist has to act. But looking back, the dentist has to ask her/himself if the case could be handled differently. Being anxious about general anesthesia is not uncommon. Thus, the dentist has to focus carefully on information when presenting the treatment plan and the need for general anesthesia to the parents. There may be understandable reasons for the parent’s’ anxiety. Maybe the twins have been through medical events that have been problematic, or someone in the close family has had problems in a medical setting. Plausibly also cultural aspects can play a role as the medical care system varies a lot between different countries and cultural settings and in particular, families with an immigrant background may have had other experiences of general anesthesia than that of the dental team. The Jill and Anna case points to how important, but also challenging, communication with the family can be. It is recommended to seek advice from specialists in pediatric dentistry or from other colleagues already at an early stage if the dentist feels that it is difficult to engage parents in a treatment plan that is in the best interest of the child. Waiting to do so may only lead to a doctor’s delay and possibly more problems for the child. The case with Anna and Jill is definitely a case for contacting the local Child Protection Services if the parents continue to act in a way that hinders treatment.
Research involving children and adolescents
Research is an important part of odontology in both order to evaluate existing treatment methods and to develop new ones. Research involving humans has a dark history and acts of cruelty have been carried out in the name of science, e.g., on prisoners of war and refugees in concentration camps during World War II. This led to an intensified discussion in the world community about ethics and to a number of incentives and declarations. The most important are the Nuremberg Code and the Helsinki declaration on Ethical Principles for Medical Research Involving Human Subjects , which has been incorporated in the legislative systems of most countries. There are also important documents about research involving children, e.g., CIOMS, The Council for International Organizations of Medical Sciences, who together with the World Health Organization (WHO) have published the International Ethical Guidelines for Biomedical Research Involving Human Subjects . This publication focuses very much on the process of informing patients, and on consent.
Involving children and adolescents in research is problematic, foremost from the perspective of information and consent. A basic principle is that research should not be carried out on children or other groups of patients who cannot fully understand information or give consent themselves if it is possible instead to engage adult, competent persons. Another angle, also problematic, is the fact that the majority of research rightfully is carried out on adults, but then generates results applicable to adults and not necessarily to children. The same issues are even more problematic when it comes to individuals (children, adolescents, adults and so on) with complicated medical problems, rare disorders, cognitive impairment, etc. These are groups of human beings often urgently in need of new drugs or treatments in order to improve health, quality of life, or even for survival. From that perspective it is important that research is carried out involving young patients; they have the right to participate, to provide researchers with their points of view, and to benefit from results of research that is applicable to their age‐specific problems and concerns.
Every researcher has to deal with some ethical considerations when doing research involving human beings. First of all, if people are going to be involved it must be high‐quality research. Second, the possible risk for the person participating must be far outweighed by the benefits of participating. Third, the person must receive understandable, and for children age‐appropriate information, be able to ask questions and receive understandable answers, the person should have the right to abstain from participation and not be enrolled, and also to cease participation later on without having to declare why. Medical or dental treatment must not be dependent on whether a person decides to participate or not. These are fundamental ethical aspects.
Other important aspects concern analyzing the pros and cons of a research project from different perspectives. This could include the perspective of the child, the parent or family, the dentist or researcher, and also that of society or the health care sector. This is especially important when engaging children and adolescents in research. There should be a good rationale for involving under‐aged persons in research, and the researcher should be able to declare and describe this.
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