Critical Analysis of the Relationship of Consent to Neonatal Nursing
Introduction
Infants serve to be one of the sources of joys of adults, particularly the parents, and thus, their proper care, nutrition, and development are meticulously taken care of and given importance. In this sense, it can be seen that many adults and societies around the world regard the family as one of the most important assets they could have. In this regard, such high regard and importance for the welfare of infants and the family can be one of the reasons why the field of neonatal nursing has been developed and given primary significance in the medical and healthcare profession. Theoretically speaking, the field of neonatal nursing involves providing medical and healthcare to infants, being assisted by nursing practitioners and professionals. Because the condition of infants and newborns are delicate and fragile, the role of the nursing practitioner or professional is crucial, most especially in terms of assisting infants that have been diagnosed to have detrimental conditions.
However, the dynamism in terms of the changes in the society, technology, and environment affect the conditions of infants, both inside and outside the womb of his or her mother. For this reason, many infants nowadays are prone to acquiring deadly diseases, which may lead either to its death or to lifetime abnormalities or aberrations. In line with this, the development of our society has also led to the improvement and advancement of science, technology and medicine, thus, providing opportunities in saving people from death from diseases, including infants. However, despite such advancements, the field of medicine and nursing follows a specific Code of Ethics, from which the ethics of consent must be followed and given importance. In this regard, the concept of consent goes in the picture, which gives the parents and the medical professionals the right to decide whether to push through with medical procedures.
For this reason, this paper would be discussing and analyzing the concept of consent, including its importance and role in medical and nursing practice. In addition, this paper would also discuss the neonatal nursing practice, along with its importance in the field of nursing. The relationship of the concept of consent with the field of neonatal nursing practice would then be discussed, thus, analysis of the subject would be provided. This would then include ethical and legal issues in relation to the practice and use of the concept of consent. Afterwards, a conclusion would be provided in order to highlight important details discussed in the paper.
The Field of Neonatal Nursing
It has been reported that neonatal nursing has witnessed a level of technological change and development in recent years, which has led to the survival of extremely premature infants. This technological change and development has called for a simultaneous development in the theoretical and practical skills of neonatal nurses, as it exposes them to the intriguing world of ethics and moral decision-making that involves fragile human beings, who are often at the edge of viability (Boxwell 2003).
Theoretically, neonatal nursing is defined as a sub-field in the nursing practice that focuses on working with newborn infants that are born with different problems, such as prematurity, infection, birth defects, surgical problems, and cardiac malformations. In addition, aside from the holistic care of the infants, neonatal nursing also involves the holistic care of the infants’ families, thus, making it as a field that involves an extensive interaction with medical care and advanced technology. This sub-field specifies a neonatal period, wherein it is defined as the period shortly after birth of the infant, to its first month of life, and even up to about two years of age. In this sense, the neonatal period involves the period from the time of birth of the infant until the time they are discharged from the hospital (Wallin 2003). In this sense, it can be seen that this particular nursing subfield involves the focus on caring for the sick newborn infants in the hospital, until they are discharged from the hospital premises. Thus, because nurses have the responsibility of taking care of the welfare of the newborn infants, added responsibility are given to them, in taking care of the welfare of sick newborn infants.
Moreover, in this particular subfield, a neonatal nurse manages different care procedures, either independently or in collaboration with physicians and other medical and healthcare professionals. Either way, life-sustaining procedures are the priority of neonatal nurses in terms of provision and care. Stress and pain prevention and management, developmental supportive care, nutrition and breastfeeding support are the other major nursing care areas involved in neonatal nursing. In this regard, the role of neonatal nurses is important in empowering the parents and in providing them with guidance on providing care for their infant (Wallin 2003). Along with such responsibilities, a neonatal nurse practitioner or NNP is highly skilled in the care of neonates and can work in practice settings with various care levels. Such levels include from the well-baby term nurseries to high-level intensive care and preterm nurseries. He or she can also work in neonatal intensive care units or NICUs or neonatal follow-up clinics. In this regard, he or she has responsibilities that include normal neonate assessment and physical examination, as well as high-risk follow-up and discharge planning (McCann 2004).
Furthermore, from the description of neonatal nursing, its different advantages in the provision of medical and healthcare can be cited and emphasized. One of the advantages of neonatal nursing is the effective and efficient provision of healthcare to the sick infants. Through neonatal nursing, it is a guarantee that additional care would be provided to sick infants, thus, giving them the increased chance or opportunity to be cured or treated. Another advantage of neonatal nursing is related to the role of the nurses in providing adequate information and awareness to the parents and family of the infant, regarding its condition or sickness. Providing adequate information and awareness on the part of the family and parents of the sick infant would enable the family and parents to pay particular attention to the type of care they would be providing them at home, including the approaches in terms of upbringing. This is because the upbringing of the infant must be suited to the physical, mental, and emotional capacity and capability of the infant in order to make him or her a responsible and effective human being in the society. The third advantage is the increased survival of the infant from deadly diseases. It has been emphasized that neonatal critical care has dramatically improved survival for children over the past twenty years. Neonatologists continue to reduce the gestational age and birth weight that a newborn must have achieved to survive, and advances in pediatric surgery and organ transplantation mean that complex congenital heart disease and biliary atresia no longer always result in death. Such diseases are no longer “lethal”, for with treatment, an infant would be able to survive fatal conditions and even enjoy a good quality of life (Koogler et al 2003). The fourth advantage of neonatal nursing is the preservation of human life. Through neonatal nursing, the nurses, medical institution, and the family and parents of the infant themselves would be able to preserve the life of the infant, thus, providing him or her the chance to live in this world, given the effectiveness of the process. The fifth advantage is gaining new insights and information regarding the disease or diseases being experienced by the infant. Such new insights and information can be used as the basis for the advancement of science, technology, and medicine that would soon be useful in future endeavors. Lastly, the sixth advantage of neonatal nursing is the invention of new equipments that would be useful in providing efficient and effective care for the infants. Through neonatal nursing, the field of science, technology, and medicine would be able to heed to the need of the sick infants through the feedbacks provided by the neonatal nurses. From such advantages, it can be perceived that the role of neonatal nursing in the field of medicine and healthcare is significant in providing effective and efficient advancement and improvement in the field of nursing.
The Concept of Consent
From the above discussion, it can be understood that the role of neonatal nursing in the field of medicine and healthcare is significant in terms of the variety of advantages that could generate a number of benefits for many individuals in the society. However, because the field of neonatal nursing has a number of advantages and benefits, it also entails a great responsibility, most especially that it deals with the lives of human beings, and infants at that. In this sense, the concept of consent becomes important and significant to recognize and given importance, as it serves to guide neonatal nurses and the family and parents of the infant in making sound and just decisions.
It has been reported that sick newborn infants have the same rights to life and access to care as any other person. As such, their care is totally dependent on a successful partnership between parents and the clinical team (Lissauer and Fanaroff 2006). In this regard, in case of severe conditions needing severe procedures, the parents and family of the sick infant have the right to be informed regarding the matter. In this sense, the concept of consent serves to be in the center of the picture. It has been emphasized that the medical practitioners of this generation never consider performing a surgical or diagnostic procedure or process on a patient, or putting the patient in a clinical trial, without first seeking informed consent. However, in early history, informed consent was never done in ancient civilizations, including the Greek, Roman, and Egyptian civilizations. Such a trend changed when different societies focused more considerably on human rights, thus, even leading to establishment of laws that govern medical practice. For instance, in the 18th century, a particular patient filed a lawsuit against two English doctors who were treating his fractured leg. This is because instead of continuing to monitor the healing process, the doctors opted to re-break his leg and placed it into an experimental device, which is designed to straighten and lengthen it. Because the treatment was unsuccessful and pushed through without the patient’s consent, the man filed a lawsuit against them (Jester 1998). In order to prevent such incidents, the medical practice of today has come up with different Code of Ethics and other laws that would relate to asking for consent or permission from the patient. However, in the case of neonatal nursing, the patient here is an infant, and in this case, the nursing practitioner must seek the consent of the parents of the infant.
It has been pointed out that health professionals are usually under pressure to allow parents greater involvement in making decisions and enabling them to give consent to treatment. This is because in clinical practice, consent is most problematic regarding the initial recovery and immediate management of extremely premature infants at the limit of viability and when withdrawal of treatment is being considered (Lissauer and Fanaroff 2006). As such, several considerations are taken note of in asking for consent regarding neonatal care.
Primary consideration is that parental consent must be obtained for complex procedures or treatment and for all surgical procedures and processes (Lissauer and Fanaroff 2006). This is because the parents have the right to know and have the right to information regarding what the hospital and its medical practitioners would have to do to their child or infant. Letting them know would give them the right to decide on the process. Second, documentation regarding the communication with the parents expounding the basis, advantages and benefits, and risks of the procedure or identified treatment is more important that obtaining a signature on a consent form (Lissauer and Fanaroff 2006). Documentation is one way of placing the agreement on paper, for the purpose of recording what has been planned and communicated. In this case, it is easier for the medical institution to store and retrieve useful information. Third consideration is that consent for a surgical procedure should be obtained by someone fully conversant with it. However, with infants receiving intensive or special care in a neonatal unit, it would be impractical to obtain detailed consent for the multitude of low-risk procedures performed on their baby. Nonetheless, parents must be given an overview regarding what the care of their infant involves and what range of procedures would be performed, both verbally and in an information booklet (Lissauer and Fanaroff 2006). Through such considerations that serve as guides, it would be easier for the nurse, the medical institution, and the parents of the infant to have effective and efficient information regarding the condition of the infant.
Therefore, the parents of the infant should be able to make informed choices when asked for consent for their infant to undergo different procedures. This can be problematic when decisions need to be made rapidly, such as in instances when an infant suddenly becomes ill, especially immediately after its delivery and when parents are emotionally stressed. As such, a number of criteria for informed consent must be taken note of. The most basic criterion for informed consent is competence of the person giving consent (Lissauer and Fanaroff 2006). As mentioned earlier, the person who must be talking with the parents regarding the matter must be the attending doctor of the infant, as the doctor knows the risks, implications, and the advantages of the procedures the infant requires. Second criterion is the sufficiency of the informed choice, including a written information sheet for the parents and the use of an interpreter in case of language barriers (Lissauer and Fanaroff 2006). In this sense, the parents would be rightly and appropriately informed regarding the condition of their infant, thus, allowing them to make a sound decision regarding the matter. The third criterion is the proper understanding of the parents of the infant regarding the procedure. Thus, the information to be given and the competence of the person providing the information must be adequate. Lastly and most importantly, the final criterion to consider is the voluntary decision of the parents of the infant, such that they must recognize that they have the right to either decline or withdraw from allowing their infant to undergo the procedure, if they believe that this would somehow jeopardize their infant’s care (Lissauer and Fanaroff 2006). It must be argued that the parents have the right over their infant, thus, giving them the power over to decide on its welfare. However, if an extreme case between life and death, it can be perceived that the medical and healthcare practitioners must be able to persuade the parents of the infant to allow the infant to undergo certain procedures in order to save its life. As such, it can be understood that the concept of consent in relation to neonatal healthcare must be one of the most problematic part of the decision-making process of neonatal nurses and their medical and healthcare counterparts, as they deal with a delicate and fragile infant life.
Relationship of Consent to Neonatal Nursing: Ethical and Legal Issues
It has been emphasized that nursing practitioners are increasingly expanding their practice to include a variety of invasive procedures (Power 1997). As such, the use of different invasive procedures leads to two major ethical issues regarding neonatal nursing. These two major issues include informed consent and the right to privacy. As discussed earlier, the concept of consent serves to be one of the most relevant issues regarding allowing an infant to undergo invasive procedures. This is because the issue of informed consent demands that information regarding the different treatment procedures be given to clients and their consent secured, thus, making it an issue having a well-defined legal and ethical foundation. As also emphasized earlier, to obtain a valid consent, the parents of the infant must be presented with relevant information regarding the course of treatment, the methods by which the treatment is carried out, any alternative forms of treatment available, including the innate risks and benefits of each option, and the risks of non-treatment. If any of such areas are not included, then the process of obtaining proper consent is incomplete (Littleton and Engebretson 2002). Accordingly, in relation to the use of such invasive procedures, there is a need for the reexamination of the responsibilities of nurses in obtaining consent. Fully informed consent is not a legal requirement in England, for either medical or nursing procedures. Nonetheless, it can be argued that in order to comply with the standard set ethics by the Code of Professional Conduct, nurses and other medical practitioners must be able to obtain informed consent for any proposed procedure infants may undertake. In relation to neonatal nursing practice, neonatal nurses are charged with four key tasks in securing consent for nursing procedures. Such four key tasks include educating themselves regarding the risks and advantages of the procedures they propose to undertake, conveying the information to the parents of the infant, assessing the parents of the infant in understanding the given information, and supporting the parents of the infant with their decisions (Power 1997).
Regarding the first key task, neonatal nurses have the responsibility and the duty to educate themselves with the risks and benefits of the procedures to be undertaken by the infant. This is because they are the ones responsible with the health and welfare of the infant, thus, its life depends on how neonatal nurses cared for them during the process of the proposed procedure. If in case the infant lost its life due to their negligence, the neonatal nurse and even the medical institution would be liable. This is why, the neonatal nurses are required to undergo appropriate training and continuous education in order to have the necessary information and skills in addressing the different needs of infants.
Another key task of neonatal nurses is conveying the information to the parents of the infant concerned. It has been reported that one of the six ethical principles guiding the nursing practice is autonomy, which is the principle that addresses independence, and allows the individual, in this case is the parents of the infant, the freedom of choice and action. It also encourages the nursing practitioners to encourage individuals to make their own decisions and act on their own values, if necessary (Forester-Miller and Davis 1996). In neonatal nursing, the principle of autonomy is related to giving of informed consent. However, the principle of informed consent does not exist within English law, and legally it may be acceptable not to inform a patient of the risks associated with a treatment providing that this is what a responsible body of professional opinion would expect. This then serves to be a good ethical and legal issue on neonatal nursing. This is because this issue raises the question of just how much information should be given who should give it. The dilemma here is that too much information may cause undue anxiety and distress on the part of the parents of the infant, while too little information may give rise to an accusation of negligence. However, Paragraph 29 of the Guidelines for Professional Practice provides guidance on this matter. It has been emphasized from the text that the “nurse is responsible for giving information when that is what would be reasonably expected under the terms of the Bolam principle, but it is not always nursing responsibility to give the information. If, however, the nurse is concerned about the level of information given or the recipient’s comprehension of it, personal accountability is primarily to the patient or client. Nevertheless, this does not mean that the nurse should immediately provide further information. Rather, the advice and help of an appropriate doctor and/or line manager should be sought in order to reduce the risk of legal proceedings being initiated against the nurse” (cited in Boxwell 2003). In this regard, the role of the doctor or someone more superior than the nurse in job position would be the one dealing with the parents of the infant. This is related to the fact that in obtaining informed consent, the competence of the medical or healthcare practitioner must be given consideration. This is not to show and indicate that the competence of a neonatal nurse may not be as reliable and credible. Rather, this goes to show that during time of emotional anxiety and stress, parents of the sick infant may be more enthusiastic to listen to the doctor of the infant, as a doctor knows much more than a neonatal nurse regarding the condition and the procedure to be undergone by the infant. Furthermore, this is also related to the principle of non-maleficence, which is the duty to do no harm. Therefore, any known side effects of treatment or the procedure must be weighed against the anticipated benefits. Clause 2 of the Code of Professional Conduct (UKCC 1992a) reflects the responsibility of neonatal nurses for this matter. Inexperience may be excusable, as all neonatal nurses have had to learn their skills. However, ignorance is not an excuse when minimizing or doing no harm to a vulnerable neonate or infant is under consideration. In relation to competence, it has been emphasized that all staff involved in patient care are held to a same minimum level of competence necessary for the safety of the patient. This highlights the importance of ensuring that neonatal nurses are not placed in the position of having to take responsibility beyond their level of competence. It is equally important that each medical or healthcare practitioner can also recognize the limits of their competence. Lack of competence may arise from lack of confidence. Hence, there is an element of responsibility placed upon more experienced neonatal nurse to support and encourage staff development through appropriate exposure to learning opportunities (Boxwell 2003).
The third key task of a neonatal nurse is assessing the understanding of the parents of the infant regarding the information provided, by either the doctor or the nurse itself. It has been pointed out that the amount of information clients must be given to consider the consent to be informed varies according to the standard used. The most commonly used standard is the community standard wherein the amount of information given would be similar to what other healthcare professionals would give in similar circumstances. Another alternative and most commonly accepted is the reasonable client standard, which requires the amount of information given be sufficient for a hypothetical reasonable client to make a decision. The third standard is the individual client standard, which asks what information this individual client needs to make a decision (Littleton and Engebretson 2002). Based on such standards, the neonatal nurse can assess what sort of information the client or the parents of the infant would be able to take in and how the neonatal nurse would be able to evaluate the information provided to them.
Lastly, the neonatal nurses and the other medical and healthcare practitioners for that matter must be able to support the decisions of the parents of the infant. If the parents of the infant perceive that some procedures may not be needed or may pose harm or damage to their infant, then they have the right to refuse the procedure or process. In this sense, in the event that the neonatal nurse or any of the medical practitioners concerned would obtain the refusal of the parents, then this must be respected by the medical practitioner and must not go on with the procedure. On the other hand, if a positive answer would be obtained then the medical practitioners along with the neonatal nurses must be able to support the decision of the parents of the infant and provide them with all the necessary information and encouragement they need. In this way, the cooperation of the neonatal staffs with the parents and the family of the infant would be effective, possibly yielding a positive and desirable result.
Another ethical issue related to the concept of consent and neonatal nursing is the right to privacy. Every individual has the right to privacy, such as when their lives are at stake in the hands of medical practitioners. Likewise, if their lives may be in jeopardy, medical and health practitioners must not be able to divulge any information regarding the condition of the patient to any other individuals. The right to privacy of patients, even in infants is related to the principle of confidentiality, which is not divulging any information regarding a person without his or her consent or knowledge, thus, exhibiting respect in terms of the privacy and wishes of the patient (‘Ethical Decision Making’ 2001). It is a given fact that the infants cannot be asked for permission and cannot agree or disagree with the neonatal nurse. However, it can be perceived that using one’s common sense, it is unethical to talk about the conditions of patients, most especially of sick infants, as this somehow reflects the type of family and parents the sick infant has. Thus, following and observing the principle of confidentiality, the information regarding the patient, which is in the case the infant and its parents, would be safe with the neonatal nurse. In the end, the infant and its family would be confident that its condition would not be known to many.
The third known and identified ethical issue in relation to the concept of consent and neonatal nursing is the fact that individual and cultural variation in the degree to which parents want to contribute to decision-making in behalf of their infants may pose constraints on information sharing and decision-making (Manning 2005). This is because the personalities, cultures, upbringing, and perceptions regarding such matters differ from one person to another. In instances that parents are traditional and close-minded, then neonatal nurses and the medical institution itself would encounter conflicts and problems such informing them the true condition of the infant, persuading them to allow the infant to undergo an invasive procedure, or even informing them of an unwanted result after the invasive procedure, such as death or further complications. One explanation to this is that when the patient is an infant, the parents’ sense of handing their infant over to the hospital’s control may be very strong (King 1992). However, on the other hand, if the parents of the sick infant may be open-minded and proactive, sharing the information and persuading them would be far easier. In this sense, the cultural, ethnical, and religious background of the parents and the family of the infant must be taken note of. This is because some family or parents, for that matter, still observe a number of beliefs and traditions based on their culture and religion, which may pose conflicts with some invasive medical procedures. This presents a substantial issue to consider, as the refusal of some parents to allow their infant to undergo some invasive medical procedures may jeopardize the life of the infant and further put it at risk of other complications, or worse, death. In this regard, the neonatal staffs, most especially the neonatal nurse must be able to address the differences in a desirable and empathetic manner in order to prevent further problems and conflicts.
Under such circumstances, the medical practitioners, particularly the physician and the neonatal staff have the fiduciary duty to establish a consent relationship with the parents, discussing explicitly and clearly the parents’ role in the decision-making process as a necessary prerequisite to informed consent. Parents must be told that they are the decision-making body for the infant, and that the hospital team’s job is to work together with them to make the choices that are best for the infant. In this sense, sharing the decision-making process with them from the beginning, even when they appear reluctant to participate is the best way to demonstrate to them that they have a place in it, and the transparency standard can help them to use their authority wisely and with understanding (King 1992). In this regard, it can be understood that such an ethical issue would have a lesser impact if the neonatal staffs would adequately inform the parents of the infant that they are an important part of the decision-making process for the welfare of their child.
Conclusion
From the above discussion, it can be deduced that the concept of consent serves to be the most important step before allowing an infant to be subjected under an intrusive and invasive medical procedure. The concept of consent allows the provision of adequate information regarding the type of procedure that the infant needs in order for it to be saved from its illness or disease. It requires the competence of the neonatal nurse or the doctor that must supply the information to the parents of the infant. In the end, the neonatal nurse and the medical institution itself must be able to support whatever the decision made by the parents of the infant. However, different ethical and legal considerations must still be considered in order to prevent conflicts and problems regarding the matter.
In the end, what matters in this sense is the effective communication between the neonatal staffs and the parents of the infant. Without effective communication, it would difficult for both parties to decide what is just and appropriate for the health and life of the infant. Aside from effective communication, the provision of complete and necessary information must be provided to the parents of the infants in order to present to them the different advantages and risks entailing the procedure. As such, the parents would be able to make a sound and firm decision regarding the health and life of their child. Lastly, prevention of the infant’s sickness would be far better than cure. Aside from helping the parents of the infant to take care of the infant, the neonatal nurse can also advice the parents of the infant to take good care of themselves. This is because strengthening themselves would somehow prevent them from having a weak and fragile infant. This also leads them to undergo lifestyle modification.
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