‘When a child dies, it is always out of season. When a child dies, dreams

die and we are all diminished by the loss of human potential’ (Behrman & Field, 2003).

According to (Committee on Bioethics, 1996), much controversy has been identified among the treatment of critically ill neonates and infants requiring life support and/or intensive care due to medical problems, genetic disorders, congenital anomalies, malformations and in some cases, extreme low birth weight.  An advancement in the understanding of and the technological treatment of these conditions has reduced the mortality rate of some of these infants by great numbers, but there are questions identified in these scenarios that query whether one has the right to extend life, at what cost this will be and whether there is meaning or significance in life even at such a young age (Committee on Bioethics, 1996).

I experienced this concept whilst on my paediatric block. Similar to the story of Baby Charlie shown above, my patient was born with congenital heart deformities that were inoperable and interstitial lung disease that was not for escalation of therapy. He was at the paediatric hospital for palliative care and was placed on a DNR (do not resuscitate) order. During this time and due to his decreased immune system strength, the patient also contracted Carbapenem-Resistant Enterobacteriaceae (CRE), an antibiotic resistant hospital acquired infection and was placed in an isolation room. The baby had little social support, the father was not known, and his 23-year-old mother did not stay at his bedside and only visited weekly or not at all. Upon questioning by medical and nursing staff, the mother did not comprehend the importance of 24-hour care or support for her baby if there was nothing they could do, and she did not want to become attached to the baby or experience anymore grief than she had anticipated. Due to the increased demand on nursing staff and the extremely contagious CRE, the baby was often left alone in the day, receiving little care and love and only monitoring through the window of the isolation room. I questioned, what is a meaningful life for a neonate? Is a terminally ill young patient’s life worth medical attention and support when other young non-terminally ill patients could be favoured? And how do medical professionals ration the high complexity of which patient’s ‘qualify’ for the life-giving support or intensive medical care?

I imagined myself as the medical doctor dealing with this case and immediately concluded that this baby was wasting a hospital bed and other non-terminally ill patients could be treated in his place, my thoughts were very logical and with little emotion attached. Furthermore, he was becoming a financial burden as he required one on one, 24-hour nursing care and intensive medical monitoring. The child was not expected to survive medically and due to the fact that he had little social support, was at the age of non-communication and comprehension and could not interact in any form, I concluded he was not living a meaningful or significant life. In contrast, when I shift my thoughts to as if I was the mother of this child, I begin to think much like the parents in the above video, intensely emotional and of a less logical pattern. I can’t imagine the horrifying thought of terminating the life of my child despite the fact that he is terminally ill. My thoughts being led by my emotions with little concern for the medical facts and rather the possible religious beliefs and manifestations. As is illustrated in this video, this debate is highly complex and draws on religion, ethical consideration, legal parameters, and medical definitions of life and death. Thus, in order to conclude or more preferably, find an understanding, one must break up the components of the topic. It is important to acknowledge the rights of parents in decision-making for children, access to experimental treatment where patients have no other options, and the need for a fair and impartial way of resolving disputes (Wilkinson & Savulescu, 2017).

Life is defined as ‘a self-sustaining chemical system capable of Darwinian evolution,’ (Benner, 2010). Although my patient was deemed terminally ill, he was capable of evolution and therefor has life by means of the above definition. The aspect of whether a life is meaningful then becomes a debate as individuals view a meaningful life differently. Once such story of a young boy with Hunters Syndrome, a terminally ill condition with no cure, is described by his mother as, ‘the happiest child you could meet’ (Renton, n.d.). But other stories, such as the story of a boy diagnosed with Krabbe disease, sees the mother describe the child as, ‘he doesn’t really do a whole lot, he is living in the body of a newborn to three-month-old’ (Rudavsky, 2019). The quality of life is often linked to the amount of function and independence a person has and if this is deemed to either regress with age or not progress at all, then it could be viewed that quality of life is minimal to start with. To consider a life meaningful at such a young age is also especially difficult due to the non-communication component and increased reliability of infants on parental care, regardless of whether they are terminally ill or not (Campbell & Mchaffie, 1995). But in the same thought, it must be realised that meaning develops from this specific state of a child’s life and there is potential, perhaps this is why the idea of a child passing is so tough. As the beginning quote states, ‘dreams die and we are all diminished by the loss of human potential.’ In terms of physiotherapy, this idea of potential becomes obvious when one takes a closer look a developmental milestones. In paediatric physiotherapy we analyse and aim treatment regimes around these milestones because we know they lead to bigger, relevant and more important steps that improve function, independence, and quality of life.

The life of the mother also needs to be considered in this specific scenario, perhaps witnessing her infant suffering would cause insurmountable grief and sadness that would succumb to a less meaningful life for herself than if she were to instead continue her life without the attachment to the baby. Although the mother’s reaction is not favoured in the hospital, it is understandable considering the patient was assumed to pass way shortly. However, it could be argued strongly that the child could live a more meaningful life receiving love and care from his mother and that the amount of care and love is irrespective of the time that he is alive. In addition, it can be argued that by receiving ‘TLC,’ (tender love and care) perhaps the baby could live longer. For example, the consequence of the Pope being involved in the Charlie case leads to people and parents in these situations believing that ‘miracles do happen’ and religious manifestations.

With regards to the ethical considerations in providing life support or mechanical intervention to terminally ill children, there are a few issues that can be identified. Infants lack the capacity to request or communicate the withholding or withdrawing of life sustaining treatment as they are patients of whom no substituted judgement can be rendered. Their present and past wishes cannot be known. If the decision to allow for death of such patients arises, three issues need to be addressed according to (Campbell & Mchaffie, 1995). These are, first, in what clinical situations are such decisions appropriate; second, who should be responsible for decisions of such magnitude; and third, by what process should they be made so that the interests of the infants are fully protected? The Institute of Medical Ethics has argued that on rare occasions a doctor is ethically justified in assisting the death of a patient, but only when asked to do so by the patient whose terminal suffering cannot be relieved in any other way (Institute of Medical Ethics, 1990). This is especially considered in circumstances where the individual is in the persistent vegetative state and it is concluded that it may be morally justified to withdraw artificial nutrition and hydration. Especially in conditions where the diagnosis and prognosis are beyond doubt, and where doctors, other carers and the family agree that continued survival cannot be in the patient’s interest (Institute of Medical Ethics, 1991).

In a case of an adult this is easier, the ethical and legal basis for decisions in competent adults is different from that of children. If my patient was a young adult who had made it clear to be kept alive on a ventilator and given experimental treatment, it would certainly have been provided owing to patient rights. In cases of children and infants the decision-making falls to two or more parties (Wilkinson & Savulescu, 2017). Parents and doctors usually share the decision-making process with regard to children cases but there have to be limits to this. Parents should not be allowed to make decisions that carry significant risk or serious harm to a child. This also includes refusing treatments that will likely benefit the child or demanding treatments that will impose significant burden without benefit. The idea of surviving and the risk of disability must be addressed, for example, infants whose lives may be prolonged through experimental or alternative methods of treatment but for whom there is no prospect of recovery without profound disability (Campbell & Mchaffie, 1995).

Furthermore, the idea of experimental treatment also needs to be addressed. As in the Charlie Guard case, experimental treatment had been identified that would conceivably benefit him, but the treatment had not been tried in any other cases and because of this it was rejected as offering no known benefit. The dilemma identified then is that new treatments can only be identified if there is evidence from previous patients and that patients are required to experience some form of risk in order to make an impact, positive or negative, to the experimental therapy regime (Wilkinson & Savulescu, 2017). With regards to my patient, there was no known treatment other than a correcting surgery but coupled with the baby’s co-morbidities, he was not expected to survive this and thus considered inoperable. The thought of my patient contributing to the development of this surgery did cross my mind, perhaps he could contribute to the learning of the medical professionals in developing alternative strategies in order to avoid circumstances like this in the future.

In addition, the health cost and implications of any treatment, life-providing or experimental should be considered. Even if treatment is not harmful, whether experimental or life support, it should not be provided if it is excessively costly and would mean denying other patients their right of healthcare (Wilkinson & Savulescu, 2017) (Institute of Medical Ethics, 1990). Especially in the case of Charlie and my patient, continued intensive care, with the prospect of low probability and improvement and high cost of treatment, represents as unreasonable and unfair use of limited resources.

According to (Wilkinson & Savulescu, 2017), ethics is not about personal opinion but about argument, reasons and rational reflection. The ability to provide life support and intensive medical care to terminally ill or ill children, who previously would have died despite medicines best efforts challenges the medical professionals and families to address profound questions (Committee on Bioethics, 1996). Our society has been divided about extending the life of some patients, especially neonates and older infants with severe disabilities. Individualised decision making about such treatment should be carried out for all children regardless of their age. These decisions should be made jointly by physicians, parents, unless a required and established child protective service is required to contravene parental authority, and in some cases, an ethical panel. It must also be noted that resource allocation or rationing decision about which patients should receive this care should be made clear and explicit in public policy and not at the bedside of the patient (Committee on Bioethics, 1996).

I left my paediatric block before knowing the outcome of my patient, based on the scenario at the time of my leaving I continue to stand by my understanding, not easily persuaded due to this reflection process. My patient was using up limited resources, had no prospect of recovery and an extreme possibility of maldevelopment. He did not have social support and was not living a meaningful life. Thus, I agreed that medical care should not be withdrawn but a DNR order should be adhered to and that this would be the best outcome for the patient, his mother and the hospital.

References

Behrman , M., & Field, R. (2003). When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. National Acadmey of Sciences.

Benner, S. A. (2010). Defining Life. ASTROBIOLOGY, 10(10).

Campbell, A., & Mchaffie, H. (1995). Prolonging life and allowing death: infants. Journal of medical ethics, 21, 339-344.

Committee on Bioethics. (1996). Ethics and the Care of Critically Ill Infants and Children. Paediatrics, 149-155.

Institute of Medical Ethics. (1990). Assisted death. Institute of Medical Ethics, 336, 61-613.

Institute of Medical Ethics. (1991). Withdrawal of lifesupport from patients in a persistent vegetative state. Institute of Medical Ethics, 337, 96-98.

Renton, G. (n.d.). What to Say to Parents of Very Sick and Terminally Ill Children. Retrieved from Motherly: https://www.mother.ly/parenting/what-to-say-to-parents-of-very-sick-and-terminally-ill-children

Rudavsky, S. (2019, March 12). Their child is ‘living in the body of a newborn.’ He could have been saved. Retrieved from IndyStar: https://www.indystar.com/story/news/2019/03/11/terminally-ill-infants-parents-advocate-newborn-screening-bill-indiana/2919508002/

Wilkinson, D., & Savulescu, J. (2017, August 02). Hard lessons: learning from the Charlie Gard case. Journal of Medical Ethics.