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Ethical And Legal Issues In Withdrawal Of Life Sustaining Treatment In Infants

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Discuss about the Ethical and Legal Issues in Withdrawal of Life Sustaining Treatment in Infants.




Ethical dilemma is the situation, where the healthcare professionals have two choose between, what has to be done and what is correct to do. The ethical dilemma can be very stress for the healthcare professional providing acute care to the small infants. This paper is based on the case study of the baby Thomas, who was delivered in the 28 weeks gestation. After the birth, the baby was immediately transferred to the neonatal intensive care unit (NICU), where the baby was administered with many invasive measures for ensuring adequate cardio-respiratory function and cerebral perfusion, as well as preventing hypoglycaemia, hypothermia, malnutrition, thromboses and sepsis. In the condition of the baby, he also suffered from recurrent episodes of apnoea. This is the condition, where the infants born at less than 35 week of gestation stop breathing for 15-20 seconds during sleep. The child had been in the NICU for 52 days, but his condition has not stabilized and he is providing poor response towards treatment. Head of the ICU and Anaesthesia Department, found medical futility of continuing the treatment. The people affected by ethical dilemma in this case scenario are the nurses and physiotherapist as well as the medical staff.


Ethical Dilemma

Ethical issues related to the premature birth of the baby can be very distressing. According to the given case scenario, the stakeholders involved in the ethical dilemma are the nurses, medical staff members and physiotherapists. The condition of the baby Thomas was very severe and according to the Head of the ICU and Anaesthesia Department, the ongoing treatments and invasive measures would be of no use. According to the potentially lengthening the treatment would not increase the length of his life. The chances of survival are very low, and even if the baby survives, he will suffer from severe neurological damage and may have to face serious disabilities. Continuing the treatment on the life support system is not appropriate for the child himself. The primary role of the healthcare professional in this regard is to inform and educate parents about the condition of the child. However, in this case the social worker believes that parents are not informed nor they were prepared for the high probability that their baby may not survive.

There are many ethical dilemma associated with this case scenario. According to the study of Bolton (2013), ethical nursing is the practice that requires analysing any kind of the bioethical issues from the perspectives of the nurses and medical staff members. This kind of ethical dilemma requires the ethical framework, which can assist them in taking the correct decisions. The nursing staff and other stakeholders involved in the case considered that the use of the life support system is useless in the case of baby Thomas and due to many physical problems he will not be able to survive. The child has been in the NICU since 52 days, and since then his condition has not improved.

His admission in NICU on the request of his parents has also increased the inadequate financial burden. Parents believe that this is not correct and withdrawal of the life support system and NICU care must be done according to their concern (Larcher et al, 2015). The studies have shown the evidences, where the parents believe that they have and they should have the rights of making the primary decision related to the  limitation and withdrawal of the life-sustaining medical treatment for their severely ill infants (Willems, Verhagen, & van Wijlick, 2014). However the majority of the parent healthcare professionals believe that the primary decision should not solely be given in the hands of parents. The final decisions should be made by the physicians (Chung et al, 2016).


Ethical Principles

Beauchamp and Childress (2012) have developed the four important ethical principles for delivering the nursing practice through biomedical ethics. These principles can be used as the framework for analyzing the ethical situation. The four principles in Autonomy, Beneficence, Non-maleficence and Justice. Principle of Autonomy states that rights and dignity of every individual must be respected, which also includes the decision making capability of the person. Beneficence stands for providing balance benefits to the patient towards risk. Non-maleficence stands for avoiding any kind of harm to the patient and justice is to make a balance between risks and benefits. However, according the study of Tingle and Cribb (2013) this kind of ethical principle is limited and there should be the involvement of the professional decision making and judgment.  

According to these ethical principles the young infants are not competent to make their decisions, thus parental autonomy is important in the decision making. The ethical dilemma for the nursing professionals and other stakeholders in the given case scenario would be to stop the NICU treatment , as it is in best interest of the child and will also stop the financial burden, because the survival chance of child are very low. According to the case scenario, there has been a lack of nursing virtues that must be practiced by the healthcare professionals. The ethical dilemma arise because healthcare professional, do not informed the parents. The healthcare practice virtues must involve compassion, care, honest, courage and kindness that lack in the healthcare professionals in given case (Meert et al, 2015).

Nurses and healthcare professionals working in the environment where highly complex technological care is required for the patients are often exposed to many ethical issues and challenges that question their integrity. Nurses are considered to be at the highest risk of getting affected by moral integrity and ethical dilemmas in the Neonatal intensive care unit (NICU) (Eden, & Callister, 2010). The healthcare professionals, in such cases the healthcare professionals are required to be intact with their own ethical obligations and must offer the best possible care and support to the infant and their family. The appropriate guidance to the parents is very important. Family centered care the major principle of the pediatric nursing (Maguire et al, 2012). It values the involvement and attitude of the parents. This kind of approach is meant to provide quality care to children and care should be planned around the complete family. According to the given case scenario of the baby Thomas, the family centered approach and its efficacy is also challenged.


Concern Towards Withdrawal of Treatment

The parents of baby Thomas wants that their baby must be given the chance and mechanical ventilation should not be removed. According the research study of Cereda and Carey (2012), some of the healthcare professionals and nursing professionals can make the decision about carrying out life-sustaining treatment in NICU, of the parents make request. This is done to respect parental autonomy. But, there are strong doubts about the benefits and efficiency of such treatment. This is because such treatment can also increase the suffering of the infant. The studies also display the evidences that show “that parents must be given time to assimilate these recommendations from clinicians, or their distress levels will increase”(Cereda and Carey, 2012)

This is very distressing and challenge to decode whether child should be kept alive or should die, mainly for the parents this situation could be very distressing also they may experience loss, pain, frustration and anger. During this process, it is important and essential that parents receive continuous support throughout this process (Eden and Callister 2010). Family centered approach is menat to to provide emotional, psychological and compassionate support during the process of NICU treatment. With lack of support, parents may feel vulnerable towards the situation and may believe that treatment will keep their child alive. The palliative care given to infants requires to provide “religious, pastoral and spiritual support” (Mancini et al 2014). A study of parents’ views found these interventions, along with memory-making, are invaluable in th

The ethical approach towards the treatment of the patients and mainly the infants involves to understand that “whether the proposed treatment will improve the patient’s quality of life” (Hagger, Ellis, & Strumidlo, 2016). In the case of baby Thomas the healthcare professionals understood that ongoing invasive treatment will not improve the patient’s condition, as the chances of survival are nearly zero as well as child may also suffer from severe neurological damage. Intensive treatment in the case of baby Thomas is of not benefit, and burden of such treatment also overshadows the benefits. According to the evidence based study of the Baird, (2011), the long term invasive and ventilation treatment can increase the suffering of the child and reduces the quality of life.

Baby Thomas suffers from bronchopulmonary dysplasia, which has resulted due to mechanical ventilation. The efforts for the extubation of the baby are also found to be unsuccessful. This condition of the baby cannot be cured. The ethical and legal parameter involved in the case requires the healthcare professionals to find contextual factors that can be responsible for affecting the decision. Thomas has been born in 24 weeks gestation, which reduces the chances of survival. He has also faced the recurrent episodes of apnoea and required resuscitation several times. Without invasive treatments also Thomas’s condition would have deteriorated and ultimately had resulted in his death. However, the treatment was carried out for 52 days, but no signs of improvement were seen.


Legal and Ethical Solution

The ethical principle is to respect life of every individual and must take measures to save it. If the ongoing invasive treatment is considered to alleviate the suffering then such process will be considered as prolonging the dying unethical use of the medical resources (Mancini et al, 2014). According to the evidence based study of Hagger, Ellis, & Strumidlo (2016), states that “In such cases, it is necessary to facilitate a family centred individual approach that considers the unique context and quality of life as assessed in partnership with the family” (p. 50). For making and ethical and legal resolution for this problem, it is important that there is unanimity must be achieved in decision making process between healthcare professionals and parents (Janvier, Barrington, & Farlow, 2014). Parents should be informed about all the aspects of the treatment and their child’s condition (Dupont-Thibodeau et al, 2014). In the case of conflict in decision making, clinical ethics committee must be involved. The role of clinical ethics committee is to help the healthcare organizations in making ethical decisions. If the resolution with the help of this committee could be achieved, legal consideration should be addressed regarding withholding life sustaining treatment in case of infants.

The rights of the child are protected under the law and it is considered that healthcare professionals have the moral obligation to provide quality of care. Withholding or withdrawal of the treatment must be balanced with duty of care and benefit of the patient (Willmott, White, & Then, 2014). It may be believed the withdrawal of the life sustaining treatment could be the denial of the basic rights of the infants, but it is considered to be within law if it is done in best interest of the child. If the ongoing invasive treatment is increasing the burden of treatment on child, if it is impacting the severity of the child’s condition, instead of providing benefits if the treatment is increasing suffering and if the condition of child is that it becomes difficult to or impossible to improve, the treatment can be withdrawn (Larcher et al, 2015). Thus, the decision should be made with mutual agreement of the parents and healthcare professionals. For the legal and ethical decision making the three main aspects should be considered that are quality of life, comparison of burden and benefits of treatment and futility of the ongoing treatment (Willmott et al, 2014).


The paper is based on the case study of a infant. Baby Thomas was born in the 24 weeks gestation period, which makes him a premature baby. The survival of the premature babies is often difficult. On the request of the parents, baby was transferred to NICU, where he had been getting the treatment for various physical problems. Even after 52 days of admission in NICU, no significant changes in the condition of the child were seen. Due to which Healthcare professionals decided to withdraw the life sustaining treatment, as it was increasing treatment burden on child as well as increasing the burden of financial cost. Paper discussed the ethical and legal parameters of withdrawal of the life sustaining treatment and provided a legal and ethical resolution for the problem. 



Beauchamp, T. L., & Childress, J. F. (2012). Principles of biomedical ethics. Oxford University Press, USA.

Baird, H. S. (2011). Paediatric long term ventilation; the right or wrong move? A critical analysis

based on case studies in picu, exploring the controversial issues surrounding the initiation of long term ventilation in children with chronic disease. Archives of Disease in Childhood, 96(Suppl 1), A80-A81.

Bolton, K. (2013). Ethical Aspects of Withdrawing or Withholding Treatment.Modern Medicine.

Chung, G. S., Yoon, J. D., Rasinski, K. A., & Curlin, F. A. (2016). US Physicians’ Opinions

about Distinctions between Withdrawing and Withholding Life-Sustaining Treatment. Journal of religion and health, 1-11.

Dupont-Thibodeau, A., Barrington, K. J., Farlow, B., & Janvier, A. (2014, February). End-of-life

decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided. In Seminars in perinatology (Vol. 38, No. 1, pp. 31-37). WB Saunders.

Eden, L. M., & Callister, L. C. (2010). Parent involvement in end-of-life care and decision

making in the newborn intensive care unit: an integrative review. The Journal of perinatal education, 19(1), 29-39.

Hagger, V., Ellis, C., & Strumidlo, L. (2016). Legal and ethical issues in neonatal nursing: a case study. Nursing Standard, 30(44), 48-53.

Janvier, A., Barrington, K., & Farlow, B. (2014, February). Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. In Seminars in perinatology (Vol. 38, No. 1, pp. 38-46). WB Saunders.

Larcher, V., Craig, F., Bhogal, K., Wilkinson, D., & Brierley, J. (2015). Making decisions tonlimit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Archives of disease in childhood,100(Suppl 2), s1-s23.

Maguire, D., Webb, M., Passmore, D., & Cline, G. (2012). NICU nurses' lived experience:caring for infants with neonatal abstinence syndrome. Advances in Neonatal Care, 12(5), 281-285.

Mancini, A., Uthaya, S., Beardsley, C., Wood, D., & Modi, N. (2014). Practical guidance for the management of palliative care on neonatal units.London: Chelsea Westminster Hospital NHS Foundation Trust & the Royal College of Paediatrics and Child Health.

Meert, K. L., Keele, L., Morrison, W., Berg, R. A., Dalton, H., Newth, C. J., ... & Clark, A.

(2015). End-of-life practices among tertiary care PICUs in the United States: A multicenter study. Pediatric Critical Care Medicine, 16(7), e231-e238.

Tingle, J., & Cribb, A. (Eds.). (2013). Nursing law and ethics. John Wiley & Sons.

Willmott, L., White, B., Smith, M. K., & Wilkinson, D. J. (2014). Withholding and withdrawing life-sustaining treatment in a patient’s best interests: Australian judicial deliberations. Medical Journal of Australia, 201(9), 545-547.

Willmott, L., White, B. P., & Then, S. N. (2014). Withholding and withdrawing life-sustaining medical treatment. Health Law in Australia [2nd ed.], 543-592.

Willems, D. L., Verhagen, A. E., & van Wijlick, E. (2014). Infants’ best interests in end-of-life care for newborns. Pediatrics, 134(4), e1163-e1168.


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