by Prof. Yati Soenarto, MD, PhD, SpA(K)
The 4 principles of bioethics are beneficence, non-maleficence, autonomy and justice. Respect for autonomy is the underlying ethical principle for informed consent.
INFORMED CONSENT IN BIOETHICS
The general principle of law, informed consent, reinforces a physician’s duty to disclose information to their patients regarding the benefits and risks that come with: the proposed course of treatment; available alternative treatments; and not receiving treatment at all.
To be considered valid, an informed consent must be informed, competent and voluntary. Competency is presumed by the law for every person aged 18 years or older. There are several means in assessing one’s competency. The individual should be able to understand and retain the information relevant to the decision making, including the purpose, benefits and possible risks the treatment, as well as consequences of not going through with the treatment. This information is then able to be used to consider whether or not to consent. Upon arriving on a decision, the patient should be able to communicate their wishes.
PEDIATRICS AS AN INCOMPETENT GROUP
In a pediatric setting, children under 18 years of age are not legally competent. This makes decision-making in pediatrics rather challenging for the children, parents, and physicians nonetheless. Two concepts that are principal to pediatric decision-making is assent by the child and consent by their parents or legal guardian.
Assent refers to a developmental term which is the active agreement or involvement of a child to participate in the proposed intervention. This is different to, but not less important than consent, which requires the legal ability to partake in a valid contract with the psychological or developmental ability to make sound decisions. Children cannot give legally valid consent, but they may and are encouraged to give assent.
Pediatric assent is an ethical principle which recognizes the capability of children (especially adolescents) to participate at some level in decision making regarding their care. To encourage assent shows respect for children as individuals with emerging autonomy. More importantly, this respects and nourishes their “developing capacity” by helping them understand at a developmentally appropriate level and giving them a role in appropriate decision-making tasks.
To obtain a child’s assent requires the following steps. The physician has to:
- Help the patient be aware of their condition
- Inform the patient what to expect in respect to their diagnosis and treatment
- Assess the patient’s understanding
- Assess factors that might influence the patient’s response
- Encourage the patient to be willing to accept care
These steps should be done by the physician in an appropriate manner to the patient’s age and maturity.
PARENTAL ROLE IN DECISION-MAKING
Keeping in mind, the minor is not the ultimate decision maker. A medical intervention (based on a child’s best interest) often may be against the child’s wishes if his or her parents consent. Thus, parental permission is legally binding and in a higher position than assent.
Decision-making in adult patients is based on a dyadic doctor-patient relationship with the presumption that adults possess the capacity for decision-making. This gives adults the capability to refuse all intervention, including life-saving treatment. This is not the case in pediatrics, where a triadic doctor-patient-parent(s) relationship comes into play based on the presumption that children lacks the capacity for decision-making. Parents may refuse medical intervention, but with less discretion because the state is responsible as parens patriae to act upon the child’s basic interests.
Parents possess the legal and moral right to make decisions on behalf of their children. However, parenthood alone is not enough to qualify one as an adequate surrogate decision-maker. There are 4 preconditions that must be met: be competent to make judgements; has sufficient knowledge and information; is stable emotionally; committed to the child’s best interests.
THE FINAL SAY
In general, most children do not expect to make decisions on their own, but they wish to have a part in the process and have their opinions heard and respected. The discussion in an attempt to obtain assent is a process that ideally integrates joint decision-making by all parties and leads to the development of a meaningful relationship, which is essentially the most important aspect.
The three parties involved – children, parents, and physicians – need not be equal in status in regards to decision-making, but this does not make it less important that each has the opportunity to voice their wants and concerns.
Parents function as the legal decision maker for their children and it is crucial that they are made aware the importance of listening to what their child has to say and consider it as meaningful. Children need to acknowledge that decision-making is a joint endeavor and while their voice will be heard and factored into the final decision, it is not theirs alone to make. The physician has a role to educate both the parents and the child, to help them grasp each other’s role and responsibilities, while also easing the burden for both. This emphasizes the ‘three-way relationship’ in pediatric decision-making as opposed to the ‘two-way relationship’ that applies to adult patients.
References:
- American College of Physician, 2019
- Black HC. Black’s Law Dictionary. St Paul, MN: West Publishing Co; 1991
- Tony Hope, Julian Savulsen, Judith Hendrick, Medical Ethics & Law The Core Curriculum, Elsevier Science Limited, Toronto, 2003, 61
- General Medical Council, 0 -18 years guidance: Other sources of information and guidance, 2007, UK
- Undang-Undang No. 23 Tahun 2002 Pasal 1 Tentang Perlindungan Anak
- General Medical Council, 0 -18 years guidance: Other sources of information and guidance, 2007, UK
- Diekema, D.S., et al. (2011). Clinical Ethics in Pediatrics: A Case-Based Textbook. New York: Cambridge University Press. P.1-4
- Beauchamp, T.L. & Childress, J.F. (2001). Principles of Biomedical Ethics, 5th ed. New York: Oxford UniversityPress from
- Modified Ross, 2016