Introduction
The medical practice is governed by ethical principles that should be observed when practitioners are making decisions on different aspects. Healthcare providers seek to offer quality care services, and in most cases, the decisions made are patient-based. However, at times, medical practitioners may be caught in ethical or moral dilemmas based on the issue being addressed. For instance, patients and their family members may have differing opinions concerning the course of action that should be taken in a given situation. In most cases, nurses and doctors have to balance the different ethical principles in their daily practice. For example, the principle of autonomy requires patients to make decisions without coercion from outside forces (Ellis, 2015). Similarly, the principle of beneficence requires healthcare providers to act in a way that benefits the patient. This paper addresses the events that led to the death of Charlie Card, which occurred on July 28, 2017, in London.
Historical and Contemporary Aspects
The Issue
Charles Mathew William Card was born with an uncommon genetic disorder known as mitochondrial DNA depletion syndrome (MDDS) (Wyatt & Siddique, 2017). The condition leads to massive muscle failure, together with progressive damage to the brain. The infant was admitted to the Great Ormond Street Hospital (GOSH) in London. Currently, there is no known cure for the condition. However, at the time, Michio Hirano, who is a practicing neurologist in New York, was working on an experimental treatment of the condition. Therefore, he was contacted, and he agreed to travel to GOSH, where Charles would receive the treatment. However, the neurologist could not travel in time, and four months later, in January 2017, Charlie suffered brain damage due to seizures. After this incident, GOSH believed that treating the boy would not yield positive health outcomes, and it would actually prolong his suffering. Therefore, the hospital recommended ending Charlie’s life.
Charles’ parents wanted to try the experimental treatment, and thus they sought to transfer their son to New York to meet Hirano. However, GOSH moved to the High Court to prevent the parents from moving their child to another hospital, for there was no evidence that the supposed treatment would improve his condition. The High Court ruled in favor of the hospital. The parents appealed the decision at the Court of Appeal, which upheld the High Court’s earlier ruling. However, determined to help their son, the parents appealed the ruling at the Supreme Court and finally at the European Court of Human Rights.
When Hirano finally visited Charles at GOSH, he concluded that his experimental treatment could not save the boy at that stage. This realization raised another controversy. After the parents acknowledged that Charles could not be saved, they requested that he be moved to their home to “die peacefully” (Wyatt & Siddique, 2017). However, the hospital objected to this request because the required invasive ventilation could not be availed at home. The parents then requested for the transfer of their son to a hospice and are allowed to spend several days with him. However, the intensive care needed for such patients was not available at a hospice. Therefore, Charles was moved to a hospice, and after the withdrawal of life support, he died the following day on July 28, 2017, at the age of 11 months. The ethical problem being addressed in this case hinges on the principle of autonomy, beneficence, and non-maleficence.
Public Policy
Why it Matters
The issues surrounding this case affect the public and healthcare practitioners in different ways. First, the principle of autonomy requires patients to make decisions without influence from external forces. As such, Charles’ parents had the right to decide to take their ailing son to New York for further treatment. However, the hospital, working under the principle of non-maleficence, held the view that such treatment would be inconsequential, especially after the patient suffered severe brain damage from seizures. The fact that Charles’ parents could not decide the fate of their child on where and how to get medication sets bad precedence concerning the principle of autonomy. The rulings by the different judicial courts to deny the transfer of Charles to New York violate the principle of autonomy. In the public domain, such ruling and the decision by the doctors may imply that patients do not have the right to make decisions concerning their health and the kind of treatment that they receive. On the other hand, doctors at GOSH were not convinced that the patient would recover based on an experimental treatment that had not been verified. Therefore, they could not let Charles leave their care. This issue affects healthcare professionals as questions on their role in determining what is good for a patient to emerge.
The Differing Opinions
The competing perspectives on this issue are based on the different principles that govern the field of medicine. On the one hand, Charles’ parents acted on the principle of autonomy. They wanted the best for their son. Currently, there is no known treatment for MDDS. Therefore, the patient was terminally sick. However, there was a chance that the boy would recover through the experimental treatment that Hirano offered. As such, the parents would rather take the chance, and try the medical procedure, than sit back and wait for the death of their son. The arguments in support of the parents’ decision depended on two aspects. First, the parents had the right to decide what was best for their child, especially under the principle of autonomy. Secondly, it made sense to try an experimental treatment on the patient because he was terminally sick, and there was no hope for the improvement of his health condition.
On the other hand, doctors were not convinced that Hirano’s treatment would have any significant positive health outcomes. Therefore, based on different medical principles, they opposed the transfer of the patient to New York. First, the principle of beneficence requires medical practitioners to act with the intention of doing good to the patient (Ellis, 2015). As such, doctors at GOSH opined that the boy was in severe pain and intense suffering. Therefore, the best outcome under the given circumstances was to withdraw life support and end the patient’s life. Secondly, the principle of non-maleficence required the doctors to act in a way that did not cause harm to the patient (Ellis, 2015). Consequently, allowing Charles to be transferred to New York without the prospect of positive health outcomes would violate this principle. This assertion holds because the patient’s suffering would be prolonged unnecessarily. Therefore, Charles’ parents and medical practitioners at GOSH differed on matters of principle.
Where the Opinions Come From
Diverse aspects inform the different opinions held by the disparate parties involved in this issue. Culturally, the topic of whether individuals can decide when and how to die is still controversial. In this case, Charles’ parents were not convinced of the decision to let their son die without intervening in any possible way. Therefore, subjecting the boy to experimental treatment meant sense to them because it was better than doing nothing about the situation. Culturally, most individuals will do anything possible to ensure the wellbeing of their loved ones. This assertion explains why family members will even donate body organs to save the lives of their relatives. Therefore, from a cultural standpoint, the parents were justified in their quest to transfer Charles to New York. After losing the legal battle to have their son undergo the experimental treatment, the parents requested his release to die at home. Even after agreeing to have the patient moved to a hospice, the parents did not want the withdrawal of the life support machine. These decisions were informed by the cultural perception that parents have an obligation to offer their best to their children.
The quest to have Charles transferred to New York to receive experimental treatment can also be explained philosophically. From a consequential or utilitarianism perspective, the right action is the one that yields the best results (Connolly, Miskolci, Phelan, & Buggy, 2016). As such, the parents maintained that Hirano’s treatment would have positive results on the patient’s health. Therefore, they should have been granted their wishes to exploit that possibility. On the other hand, doctors argued on the same philosophical principle that the best results would be achieved through withdrawing life support machines to end Charles’ pain. Additionally, from personal experience, medical practitioners were convinced that the experimental treatment would not save or improve the patient’s life and health, respectively. Therefore, based on this understanding, the hospital consulted different professionals in the industry and agreed that there was no need to transfer Charles to New York. Similarly, the decision to move the patient to a hospice as opposed to home was based on personal experience. The doctors knew that the kind of care that Charles needed at that point could not be availed in a home set-up.
Conclusion/Personal Opinion
This issue has affected my thinking as a nurse. While I acknowledge the principles of non-maleficence and beneficence, I also appreciate the need for patients to make choices concerning their health. As such, if I were to make a decision in this case, I would allow the parents to transfer their son to New York. Sometimes it is overwhelming for a nurse to see patients undergo excruciating pain without the hope of recovery, especially when dealing with terminal illnesses. In such moments, ending one’s life seems like the only practical way to alleviate the suffering. However, as a nurse, my first duty is to save lives, and thus I would support any opportunity to do so. Matters surrounding the different medical principles are controversial in most cases, as highlighted in Charles’ case. A decision by one side may not necessarily be acceptable by the other involved parties. Therefore, at times, legal battles ensue, among other outcomes. This understanding has challenged me, as a nurse, to be open-minded about the different issues that may arise when offering care to patients.
References
Connolly, C., Miskolci, O., Phelan, D., & Buggy, J. (2016). End-of-life in the ICU: Moving from ‘withdrawal of care’ to a palliative care, patient-centered approach. British Journal of Anesthesia, 117(2), 143-145.
Ellis, P. (2015). Understanding ethics for nursing students. London, England: Learning Matters.
Wyatt, T., & Siddique, H. (2017). Charlie Gard’s parents say their ‘beautiful boy’ has died.The Guardian. Web.