Medical Ethics in Pediatric and Newborn Practice and Ways of Addressing the Ethical Dilemmas

Ethics is the science of morals or moral philosophy, which are concerned with human behavior; especially the distinctions between good and bad or right and wrong.[1] Medical ethics is a set of moral principles that guide healthcare professionals and organizations to act in the best interest of patients.[2] By applying the set values of medical ethics, professionals can deal any case having confusion or conflict. But it is also true that, in the 21st century, clinical problems with significant ethical implications pose an ever-increasing dilemma in our everyday medical practice. This is particularly the case with ethical issues involving children and those unable to take their own decision.[3] In this editorial we shall review some of the general principles of medical ethics and issues related to ethical dilemma, to guide doctors in handling these situations in a rational and professional manner. Principles of medical ethics There are four basic principles of medical ethics which areappliable for patients of all ages postulated by Tom Beauchamp and James Childress.[4] These include beneficence, non-maleficence, autonomy and justice. These four values are not ranked in order of importance or relevance and they all encompass values pertaining to medical ethics. Beneficence: It is considered as one of the core values of health care ethics. Beneficence means taking actions that serve the best interests of patients and their families. However, uncertainty surrounds the precise definition of which practices do in fact help patients.[4] Non-maleficence: It is embodied by the phrase first “do no harm.” According to the Hippocratic oath, it is not only more important to do no harm than to do good; it is also important to know how likely the treatment will harm a patient. The patient needs to understand the risks and benefits, and that the likely benefits outweigh the likely risks.[5] In case of children, as they can’t take their own decision, parents need to be counseledproperly regarding benefits and risk of any treatment. Autonomy: Autonomy is defined as the ability of an individual to make a rational, uninfluenced decision. It means that patient and parent (in case of children) has the right to refuse or choose their treatment. Nowa-days, Autonomy has become more important as social values have shifted to define medical quality in terms of outcomes that are important to the patient and their family rather than medical professionals.[6] While practicing autonomy patients are actually made decision making partner in medical management. Justice: It means equality. It is concerned about the fair distribution of scarce health resources and the decision of who gets what treatment.[7] Sometimes conflicts arise in medical situations between autonomy and beneficence/ non-maleficence. Individuals’ capacity for informed decision-making may come into question during resolution of conflicts between autonomy and beneficence. Sometimes, involvement of the relatives of patients or even the medical practitioners can assist in medical decisions. Ethical concerns in children While managing pediatric cases, two concerns are always there: Who is best able to determine what should be done? What criteria should be used to determine what should be done, and are there limits to the use of these criteria? Who will determine what should be done? In our society, parents are typically accepted asthe primary person to make decision for their children. Parents are the legitimate decision makers, on the other hand, some medical decisions are complex, some patient conditions are tragic and some family situations are difficult. Parents sometimes struggle with emotions and grief; some parents may have conflict of interest (whether money or time or others). Contrarily, physicians have experience concerning certain conditions and would seemingly be impartial to adjudicate the wellbeing of the child. Further some children are older, more experienced, highly intelligent and thoughtful and thus, the decisions being made might best be made by them.[8] In this context, clinicians need to arrange a board meeting with experts in respective subject along with the legal guardian and or family members and then can suggest the best possible options for patient’s critical situation and can help in decision making. But in children, the age of their decision making or consenting ability is questionable. According to the Penal Code 1960, Law of Bangladesh, a child below twelve years of agecannot give consent regarding their any physical or mental illness and treatment.[9] In a study done by Hendrik et al. children as young as 11 years have been found to understand their own illness in parallel to their parents’ level of understanding.[10] In order to handle these situations, there should be standard protocolin every health specialty where age demarcation and decision- making rights are clear and concise. How to deal cases having dilemma? There are many conditions starting from in-utero to childhood where dilemma can happen. But cases and conditions need to be categorized and individualized. It is better to have country specific structured protocol, expert ethical committee and commitment. Some realistic situations with possible solutions are given below. Neonatal In-utero cases with congenital anomalies: If identified after 28 weeks of gestational age, choice would be either to continue the pregnancy knowing that the fetus may die or develop serious disability or terminating the pregnancy. Initiation of intensive care in a surviving newborn after counseling for termination is abig challenge. Because care is being occupied by newborn with poor or guarded outcome. Upon discussion with parents, treatment needs to be initiated for best interest of the baby. Resuscitation before viable age: Globally variations exist regarding age of viability. In Bangladesh, the limit is 28 weeks. Full resuscitation efforts have to be initiated if the gestational age is 28 weeks and above. Discussion with parents should be carried out if no agreement can be reached. In that case,have to act on babies’ best interest. Unresponsive to therapy or terminal stage: When a newborn is in critical stage of the illness and unresponsive to therapy(severe perinatal asphyxia, chronic lung disease, grade 3 or 4 intraventricular hemorrhage etc.), it is crucial to have detail discussion with families. If brain death is suspected in a patient, it needs to be confirmed. Adequate preparation, communication and practice can make the situation easy to handle. In addition, delaying brain death determination can add increased stress to the patient’s family. Pediatric In older children, it is more difficult to handle the family and sometimes parents can’t take decisions due to stress, anxiety and fear of loss to their loved ones. Ethical dilemma occurs mostly during management of chronic illness (pediatric type 1 diabetes, asthma, renal disease etc.), certain genetic/ metabolic abnormalities/ syndromes (neurometabolic diseases, Down’s syndrome) and conditions that are unresponsive to therapy (end stage diseases). In these situations, we need to do the following: When death is inevitable in a ventilated child or in terminal stage: If life-sustaining treatment is futile because death is inevitable, or the treatment is excessively burdensome relative to the likely benefits, then there is no ethical duty to continue treatment. It is important to have a discussion with parents. If they are unwilling to give consent, treat with respect, patience and empathy. If no agreement can be reached, primary duty must be to protect best interest of the child. Whatever the critical condition, the child should be treated with dignity, respect and compassion. Complex cases may present moral dilemmas, but careful reasoning can help clinicians make the best decision for the child. If the child is at an age of developing to adult period, and have a definitive understanding level of his/ her illness, then discussion need to be done with them also. Hospital records are vital in ethical issue which should be clear and everything requires to be written with informed consent of the child and the families. Role of hospital ethics committee When faced with an emergent dilemma, clinicians sometimes rely on risk management or hospital counsel to answer legal questions, but may be better served by real‐time ethics consultation. Hospital ethics committee is a way to help in this regard. This committee is involved in certain situations like when there are disagreements about treatment options, when there is conflict between a patient’s religious beliefs and recommended treatment, when there are questions about who should make decisions for the patient and when their questions about end-of-life care etc. This body also creates policies about topics like do not resuscitate orders, informed consent and advance directives and promotes shared decision making among patients, families and clinicians. In developed countries it is well established but in a country like Bangladesh, this does not exist practically in most of the centers. So, doctors should feel confident in making timely decisions, guided by basic principles of medical ethics until this committee is incorporated with the infrastructure of our health system.[11] General ways to address ethical dilemma[12] Identify the problem (Assess): Gather information about the situation, focusing on facts. Consider whether the issue is related to the patient, the patient’s loved one, or yourself. Apply ethical principles (consideration): Use ethical principles like beneficence, non-maleficence, justice, and respect for autonomy to guide your decision-making. Consider medicolegal implications and make sure the outcomes are legal and meet professional principles. Analyze: Make a couple of choices which are leaning towards and others have been eliminated. Analyze these choices and determine whether going through with it will provide the anticipated results and what the potential consequences are. Consult with colleagues (Explain): Discuss the dilemma with colleagues and use the system to consider solutions. Bring different disciplines together because physicians and nurses can work together to address moral distress. Action: Making a choice during a dilemma is hard, but once you go through all your alternatives and reasoning, you can implement your decision with more confidence. Ensure patients are aware of the risks, benefits, and alternatives before medical interventions. Written informed consent for each procedure and treatment needs to be ensured during difficult case management. Patient’s medical records should not be disclosed and Practitioners should strive to remain truly objective and avoid all personal, racial, cultural, religious or other bias when counselling or treating children. Conclusion In patients who are either too young or incapable of understanding the risk/benefit or outcome of treatment, a single solution to a given ethical problem is extremely difficult. These patients rely on parents and/or families for their decision making, and this adds a further dimension to an already complex situation. Through a structured and strict code of ethics based upon respect and best interest of patient, these complexities can be minimized. Good collaboration with parents, health personal and ethicist is also important to establish for good clinical practice with respect to ethics. Recommendation In a country like Bangladesh, everybody knows about importance of medical ethics but in reality, there is lack of clear guidelines for individual case neither for newborns nor for older children’s which doctors can follow. So, preparing a national guideline by involving experts in respective field is the demand of time. Medical ethics also requires to be incorporated in the under and post graduate course curriculum. Moreover, there should be hospital policy to involve parents and families in decision making. Acknowledgement I would like to express my sincere gratitude to Dr. Sharmin Afroze, Associate Professor & Head of Neonatology Department, Dr. M R Khan Hospital & Institute of Child Health, Dhaka for her valuable contribution in writing and formatting the manuscript. Financial support and sponsorship Nil. Conflicts of interest There are no conflict of interest.