Pediatric Care Ethics - An Overview

Introduction:

Parents or caretakers are more concerned with the medical treatment given to their children. While their decision is essential, it is equally important to enable kids to make independent decisions. The physicians must assess pediatric patients to determine if they can understand the risks and benefits of the relevant treatment and explain it according to their level of understanding.

Why Is a Pediatric Consent Important?

A mature pediatric patient will be able to understand the procedure better and cooperate during the treatment. They can communicate their needs and discomforts in a better way when they can understand. The ethical obligation to seek a pediatric patient’s consent to treatment is made stronger and there are reduced chances of conflicts in the future. The child’s right to give consent should be respected except in serious, and life-threatening situations. The reason for the child’s dissent should be identified and addressed.

What Are the General Ethical Principles?

The general ethical principles are as follows:

• Respect for the Individual’s Autonomy: Autonomy means that an individual has the right and freedom to make their own decisions. In medical care, autonomy is possible only when the patient is fully aware and can understand the implications of a health condition, its treatment, complications, and outcome. In pediatric care, a majority of the patients are not involved in decision-making and are dependent on their parents or caretakers for their guidance. Doctors must however obtain informed consent from children who can understand apart from the parent’s or caretaker’s opinion.

• Respect for the Individual’s Competence: Competence refers to the patient’s level of understanding that enables them to assess the ethical issues put forth by a clinical situation, understand these, and arrive at a decision. This level of understanding is difficult to expect in young children thereby bestowing the responsibility on the parents or the medical team.

• Respect Beneficence: Beneficence refers to the main principle of the Hippocratic oath, ‘to do no harm’, and should be applied in all cases. Medical practice usually involves weighing the benefits and harm, especially in the case of interventional procedures and drug therapy but the decision should be directed against those that offer more ‘benefits’. A high-risk treatment can be initiated in a fully informed patient, provided there are more benefits involved.

• Respect for the Truth: There should never be a need to lie to the patients, similarly there should be no justification for withholding or omitting necessary information from patients.

• Respect for Patient Confidentiality: All patients have the right to expect the doctors to keep their information confidential. Disclosure of confidential information without the patient’s consent is justifiable only in situations where failure to report may result in greater disadvantage to the patient like in cases of physical abuse.

• Avoidance of Paternalism and Bias: Physicians should be neutral and refrain from all personal, racial, cultural, religious, or other kinds of bias when treating or counseling children. Personal prejudice or preconceived notions must never impact in providing or withholding of medical care to patients, irrespective of whether the patient is disabled, disadvantaged, or otherwise. The interests and wishes of the parent or the caretaker too should be respected without any bias.

• Respect the Limitations of Medical Care: Medical care should be directed to support the patient and be customized to the requirements of the patient including any disabilities or complications. It is ethically correct to appreciate any realistic goals which can be achieved through medical care and it is inappropriate to exaggerate or give impossible expectations. It is not possible to ‘treat at all costs’.

How Can Physicians Help With Health Care Decisions in Minors?

Physicians can help the child in the following ways:

• Be compassionate and provide humane care to all patients.

• Discuss with parents or caretakers regarding the patient’s medical and psychosocial requirements and interests concerning the family relationships and resources.

• Develop a customized treatment plan suitable for the patient and offer treatment recommendations based on the best available evidence and prefer substitutions or alternatives that will not affect important choices in the future by the adolescent and the adult that the child will become. When there are doubts regarding the long-term outcome or the efficacy of the treatment or alternatives, physicians should share ongoing data collection to clarify the patient’s queries.

• Discuss and work with parents or caretakers to simplify complex treatment plans whenever required and educate the parents or caretakers and help them understand to avoid certain behaviors that will place the child or others at risk.

• Be supportive and encourage the parents or caretakers to discuss the health status with the child and pave the way for parent-child conversation which is particularly suitable for reluctant parents. Physicians should also explain to parents or caretakers regarding social or culture-sensitive impacts of certain conditions and encourage them to discuss with those who have faced a similar situation and have volunteered to offer support as peers.

• Physicians must ensure that decision-making for the terminally ill or those under life-sustaining treatment should involve the patients in decision-making depending upon their level of understanding and their interest to participate. Parents or caretakers must be made to understand the outcome of the condition with or without the treatment. Parents or caretakers must be clearly explained about beginning a therapy with the intention to evaluate its clinical benefits and effectiveness in the patient and determine if the treatment has caused any improvement or not within a specific time. Parents or caretakers must be informed before the procedure that the treatment will be discontinued if the treatment is unsuccessful in achieving the needed benefits.

• If the patient (patients who are able to understand and are able to communicate their preferences), parent, or caretaker is not clear or is not interested in the specific treatment plan, their decision should be respected.

• In case any disagreement prevails between the physician and the parent or caretaker regarding the treatment recommendations, consultation with an ethics committee or other institutional resource is advised.

What Are the Ethics in Pediatric Care?

Various ethics in pediatric care are:

• Assent and Parental Permission: Informed consent refers to the ability to understand the health condition, its complications, and its outcome and accept to proceed with the treatment. The age at which a person is independent to take their own decisions regarding medical care differs with the place. Parental permission refers to the decision that is taken by a parent or a caretaker on behalf of the patient. In many situations, children are not given the privilege of decision-making by their parents. In serious or life-threatening situations, preference should be given to procedures that will be beneficial to the patient and not to the parental right to decide.

Understanding the need for a patient’s assent is the main challenge in pediatric ethics. It is the duty of the doctor to explain the procedure to the child and address their dissent in a way they can understand. A clear demarcation should be made between situations in which the child’s assent will be obtained and situations in which the child will be respectfully informed that the procedure will be carried out irrespective of their decision. In such cases, pediatric ethics requires physicians to apologize to a child for overlooking their dissent. On the other hand, adolescents may be able to understand what is being told by the physician and can make decisions ethically but not legally. These adolescents can be guided by their parents.

• Treatment of Critically Ill Children: The outcome of certain conditions in infants, children, and adolescents can differ. Some may die while others may fully recover or survive with new or worsened disabilities. Uncertain outcomes can increase conflict and misunderstandings between the parent or caretaker and the physician.

• Transitioning the Goals of Care: Children die in an intensive care unit (ICU) only after a decision is taken to either limit or withdraw the life-sustaining medical treatment. This is justifiable only when the chances of returning or managing an acceptable quality of life are minimal when compared to the sufferings of the patient. This decision should be made only after considering all other medical outcomes, family decisions, burdens on the patient and family, cultural and religious impact, and possible input by the patient. Despite legal fears, treatment should be aimed at what is beneficial for the patient.

• Concept of Futility: This concept is used to support the unilateral withdrawal of life-sustaining medical treatment against the patient’s and parent’s wishes by stating that physicians should not provide useless (futile) interventions. When a particular treatment is regarded as futile when the necessary benefits cannot be achieved, this approach can support a medical goal of doing no harm.

• Communication: Communication about life-threatening illnesses can be challenging and requires skillful communication with the patient’s family members in one or more sessions, listening carefully to their fears, hopes, expectations, and understanding, explaining the existing condition and complication in simple terms, sharing their grief, and so on. The communication can be aided by child psychologists or child life specialists.

• Withholding and Withdrawing Life-Sustaining Treatment: Refraining from medical interventions or withdrawing life-sustaining medical treatment is ethically acceptable only if the chances of returning or managing an acceptable quality of life are minimal when compared to the sufferings of the patient. The decision should be taken only after completely evaluating the treatment results and the evolution of the illness and determining whether such interventions would be the best option.

• Advance Directives: It is the mechanism that allows patients or surrogates to assign desirable medical interventions under appropriate circumstances.

• Artificial Hydration and Nutrition: Issues regarding the withholding or withdrawal of artificial nutrition remain controversial. For a terminally ill child who is not aware of hunger and does not accept enteral feedings, and in whom the parents or family members, and the medical team believes that IV nutrition and hydration just prolongs the dying process, it may be ethical to withhold or withdraw IV nutrition and hydration after assessing the benefit-burden analysis.

• The Doctrine of Double Effect: The two major features of the doctrine of double effect are that the unintended medication outcome or withdrawal of the treatment should not be the basis of achieving the intended outcome like relief from pain and other targeted symptoms. The other feature is that intentionality is not a psychological state but rather a main feature of the act itself.

• Care of Disabled Newborns: According to the Baby Doe Regulations, withholding medically beneficial treatment is not acceptable except under situations of permanent unconsciousness. Studies done after these regulations show that physicians were inclined to parental decisions rather than governmental norms, and felt that they are now limited to institute treatments that neither served the patients nor the families appropriately.

• Declaring Death and Organ Donation: Donation of organs is recommended only in brain-dead individuals or in those who are considered non-heart-beating donors. To avoid conflicts, a detailed discussion and understanding of organ donation should be done by individuals who are trained and skilled in this aspect. This transfer of information by a trained individual rather than by a physician with the family members directly has reduced conflict rates and improved donation rates.

Conclusion:

It can be difficult to predict the outcomes of medical science in certain circumstances and management in these situations can be difficult. Pediatric care can be challenging since these patients are too young to understand the treatment process. These patients are dependent on their parents or caretakers for their decision-making and this further complicates the situation. Only by paying careful attention to the principles of ethics and respecting other people's opinions can decisions be made which are beneficial to the patients and society at large.