First, the child, which is central to the decision, is unable to express their choice. This child can not choose who will represent his convictions to make a decision in his interest, as do the adults in case of incapacity. The person or persons who will represent the child will be forced to make a decision in the best interests of the child according to general concepts. We can then attend to conflicts in the choice of the representative of the child: parents, the medical team or a judge.
Second, parents are in crisis at the possibility of death or serious disability of their child. According to several experts, some parents in crisis situations could be considered unfit beings to make choices appropriate, since the difficult situation caused by very disturbing news may lead them to make decisions contrary to the best interests of their child. These same authors suggest that parents may suffer psychologically from the burden of the decision, then they do not have the capacity to take. The desire for a perfect child or the inability to accept a child with a disability, the impact on family or social image, etc.., Are among the reasons that may explain their inability to make a proper decision.
Factors that may hinder a proper parental decision regarding treatment provided to their child
Finally, it is easy to use new medical technologies to push the limits of viability, as described under the concept of "technological imperative". The consequences, unpredictable when using a new approach, can be devastating for individuals, families and society. Oxygen therapy without monitoring used in the 1950s is one example. The doctors are not without conflicts of interest for several reasons, including the values based on their personal and professional experience, their participation in research, their desire for success and professional recognition, etc.., Hence the importance dialogue between peers or multidisciplinary meetings.
ETHICAL PRINCIPLES IN NEONATOLOGY
Among the ethical principles and concepts related to neonatology, protecting the best interests of the child remains the central notion. The principle of autonomy, the principle of justice and the principle of loyalty are also important.
Ethical principles and concepts in neonatology
The primary interest of the child
The primary interest of the child is most often defined in terms of beneficence and nonmaleficence, according to the first principle of the Hippocratic oath: "above all, be helpful and do no harm." The primary interest of the child is to ensure their welfare (beneficence). However, there is no clear consensus on the content of this concept. This can be defined as a ratio between the benefits and adverse effects of a decision under the concepts of "unnecessary suffering" or "strict futility". However, the level of this report is still undetermined.
The concepts of "unnecessary suffering" and "strict futility"
The definition of unnecessary suffering, especially, involves concepts of relevance and quality of life. The notion of usefulness or utilitarianism underlying philosophical ideologies which do not have the same meaning among various professionals, parents and community representatives and even for children.
The concept of quality of life, in this definition of unnecessary suffering, is also variable from one individual to another. Quality of life was defined by some authors. This concept includes not only the physiological or intellectual abilities of the individual, but also the capacity of family or society to support herself.
Definition of quality of life
We observe that the notions of quality of life and utility and, therefore, the definitions of futility and needless suffering, depend on social beliefs. This phenomenon is demonstrated by some studies, in which children born prematurely, although having lower indices of quality of life objectively measured against defined standards, have a subjective perception of their own quality of life equivalent to that of term infants. In such a situation, the trap of adultomorphisme or adultocentrisme is possible. This vision underpins the fear of raising a child who may have a reduced quality of life according to social criteria established, while in fact the child does not seem to suffer from his condition. The person making the decision should not try to decide based on personal or social predefined concepts, but a decision that will reflect the views of the child or will be reasonably close as possible.
Notions about the recent statistics of survival and prognosis of development are needed. When the risk of death and neurological sequelae are high, the treatment team and the parents will advocate not a resuscitation attempt. By cons, the definition of high risk varies between professionals, which causes painful debates. The statistical data to guide decisions are only general approximations, often inadequate when applied to a single premature, especially since they do not take into account the individual characteristics may alter the clinical course. The final decision is often taken from incomplete data or unpredictable.
Based on the recommendations of the Canadian Paediatric Society, it seems acceptable to offer a conservative treatment or palliative for children at risk of death or neurodevelopmental sequelae cumulative of over 70%. In addition, consideration should be given more aggressive treatment in children with a death rate and neurological sequelae of less than 70%.
Principles of autonomy
The physician must respect the autonomy of different parties involved in this process ethical, but it is important to allow different parties to express their desire and, thereby, promote the expression of their autonomy.
The child's autonomy should be respected. In rare situations, the child seems to decide for itself its evolution, progressing favorably without extraordinary maneuvers or developing fatal complications despite maximum intensive care. In the latter situation, there is a risk of overtreatment.
More often, the child is unable to express themselves, and parents are traditionally regarded as natural substitutes for decisions relating to health care for their child.
The autonomy of parents should be respected because they are entitled to their own self-determination and are responsible for the child. They will take its development and support for many years, in a context where the support given to parents and premature infants is insufficient after the hospitalization phase. The long waiting lists for physiotherapy, occupational therapy, psychology, etc.., Testify.
Parents play a dual role in this situation that places them in conflict of interest. On the one hand, they are best placed to protect the best interests of their child but, on the other hand, they protect their own values. The doctor only to ensure the competence of parents to decide. As has been previously established, the challenge is to determine the criteria which we consider that the parents are unfit for this role.
However, parents are best placed to advocate for their child. When complete information is transmitted, and sometimes repeated, in a language appropriate, the majority of parents make a decision that protects the best interests of their children and recognizes their responsibilities, their constraints and their values.
The autonomy of the family (brothers, sisters and other family members) may be raised. The development of siblings of premature babies could be jeopardized by the burden (time, financial, etc.). That it represents for the family. There are also some situations where the wider family may have to engage in care of this child if the parents become incapacitated.
The physician autonomy is part of the decision. The latter must take into account his medical knowledge and its code of ethics and avoid solutions that foster their professional recognition (search, fame, etc..) At the expense of the interests of the child, family and the community. Its role is to explain, in a language appropriate, acceptable and unacceptable possibilities to protect the best interests of the child, while allowing autonomy and coordinating the various parties involved.
The autonomy of society can be challenged. The costs to society after the birth of a premature infant, associated with one hand in the months of ICU stay and, secondly, to the care of children who develop complications related to their prematurity, and support families, are enormous and can sometimes limit individual choice. One can perceive a potential conflict between individual interest (autonomy of individual choice) and the collective interest (independent of the company).
Principle of justice
This principle encompasses a notion of proportionality and equity efforts and resources available to different people in the community. Some authors raise the need for social debate regarding this issue to determine how the community can manage resources and costs related to the birth of premature infants, to maximize the benefits for both the community and for individuals.
Professionals should devote time and effort to all children fairly. In critical period, they must commit to devote efforts to children less sick and have a better chance to avoid complications adverse prognosis. They also need to devote to children both in the acute period under medical supervision adequate to detect and treat complications related to their early birth.
From a family perspective, parents should give time to all their children. Having to deal more exclusively a child with a high risk of being disabled (vulnerable child syndrome) could undermine the development of another child, normal.
Principle of fidelity
This principle challenges as parents, health personnel, the physician and society. The parties involved in a joint decision must accompany the child in the process, or otherwise, in events leading to his death.
The physician should remain faithful to the family and promote the necessary support (psychological, familial, religious, etc..). For example, it should ensure that the family has access to different sources of information, so it is fully informed. It should propose a set of solutions it considers adequate to each family and protect the best interests of the child without imposing its own values and by supporting the autonomy of parents in their choices.
Then the doctor should remain faithful to the child and family and ensure that interventions consistent with the choice made. Furthermore, it should offer the possibility of changing decision and comply with these changes possible.
The community should also take account of this principle. For example, if we require that doctors reanimate premature infants at risk of developing major sequelae (3), the company must be prepared to offer resources to promote their development and growth. Currently, once discharged from hospital, premature infants who develop abnormalities are often left on waiting lists, which can aggravate the problems.