Introduction
For dying patients, they must receive quality care that relieves all and any kind of suffering while respecting the patient’s desire. However, in pediatric care, when it comes to end-of-life care, parents and guardians are involved in the decision-making process regarding their children’s health. This decision goes into figuring out whether nurses and doctors should come up with life-supporting treatments for a child who has a life-threatening condition. However, the main issue arises when figuring out the extent to which and the level that parents should be involved. Despite this issue, end-of-life care for children presents an ethical dilemma to all medical physicians (Akdeniz et al., 2021). Even though the situation may already be challenging, ethical dilemmas complicate it even further as it involves the death of a child. It is, therefore, essential to figure out how to incorporate ethical principles in the nursing practice. Several ethical principles are recognized globally in relation to end-of-life care, including beneficence, autonomy, justice, and nonmaleficence.
There is a need for improved palliative care in the world due to the increase in the ageing population all over the world, the increase in cancer cases, and other highly contagious infections. Jofiro et al. (2018) highlighted that emergency department deaths make up a small part of children’s deaths in hospitals. There are about 55,000 pediatric deaths that take place in the United States yearly. With the improvement in modern medicine and technology, medication has helped to prolong life and reduce the norms of death. However, medicine has not reached a place where it is able to take care of or treat chronic diseases. Therefore, children often succumb to chronic infections and become terminally ill. One of the main advantages of end-of-life care is it helps terminally ill patients deal with suffering, optimizes the life they live until death happens, and allows the children to experience death in comfort. However, making this decision is not always easy for parents, physicians, and family members as they have to figure out whether they want to prolong the individual’s life or allow them to die naturally.
Ethical principles of end-of-life care
As mentioned earlier, four primary ethical considerations are accepted in Western and Eastern cultures, but their application and use differ. Autonomy is one primary ethical consideration; this implies that all patients have a right to determine what action they want to take. Everyone can decide the kind of care they need, but for children, the responsibility often falls in the hands of their parents and caregivers. Children need to understand the complexities of the decisions they have to make regarding their lives. However, an ethical dilemma arises as children may only sometimes understand the consequences of their choices and how they are likely to impact those around them. With proper communication, it becomes easier for children to understand what is at stake and why it is necessary for the decision to be made. Santoro & Bennett (2023) highlighted that children go through different stages of intensive thinking, and children also possess adult-like cognitive skills that permit them to participate in medical decisions.
Despite their having adult-like cognitive capabilities, they may have limiting communication skills that reduce their ability to be part of important life decisions. Therefore, it is essential to involve terminally ill children in the determination of whether or not they want to live on life support or end their lives. Exercising autonomy in end-of-life care helps to ensure children do what they desire with their lives. However, this is not always a good decision as sometimes they are not able to understand what is at stake and the best way to deal with their situation. Therefore, parents and families have to come in to help make the decision. Until children get to the age of 18, their parents are their healthcare proxies. By putting children under end-of-life care, they are able to come to their death naturally, have an easy time dealing with their situation, and reduce the child’s suffering to significantly lower levels. Therefore, physicians, family members, and parents need to ensure they exercise autonomy with their children on the decision to enter into end-of-life care.
Beneficence demands that physicians use the most effective intervention for a particular patient. When the patients and parents have not made it clear how they would want to receive end-of-life care, physicians then become the proxy. Therefore, physicians have a responsibility to take care of the dying patient and find the best method to promote the delivery of the best care. This ethical principle may, at times, be in contradiction with what the patient wants. Sultana et al. (2021) noted that there are several challenges that patients, along with physicians, are likely to go through as they deal with end-of-life care. Even when a physician decides to implement end-of-life care, the patient may more often than not have to deal with the pain while undergoing treatment. Patients deal with a lot of pain.
Additionally, with end-of-life care, patients suffer from depression. Depression has been shown to affect a vast percentage of individuals who are terminally ill, and they may have suicidal thoughts. Children are likely to suffer from depression as they do not have a life outside the hospital. They are not able to interact with friends and family, nor are they able to enjoy meals or activities they want.
Another central principle is nonmaleficence, which means that one refrains from bringing about unnecessary harm. It is the fundamental basis for good medical care. However, end-of-life care for terminally ill patients comes about with a lot of pain or issues like suicide and other depressive symptoms. This, therefore, causes a lot of ethical dilemmas as it is hard for nurses to follow the nonmaleficence rule while helping children who require end-of-life care. For physicians to comply with the principles of beneficence and nonmaleficence, healthcare professionals need to understand their roles and responsibilities when delivering end-of-life care. Physicians have to be honest about the health of their dying patient’s diagnosis and the consequences of the patient’s disease. By telling the truth, physicians are able to respect autonomy while delivering the best quality care.
ANA code of ethics
The ANA code of ethics helps to guide nurses in making proper decisions throughout their work schedule. The ANA code is essential for patients, and it helps maintain high-quality care from expected nurses. In relation to the ethical dilemmas of end-of-life care, in regard to autonomy, it applies to both nurses and patients. Nurses have a responsibility to provide adequate information and education so that patients are able to make informed decisions (IntelyCare, n.d). However, these principles may only sometimes work together with what a patient or family members want—making it difficult for physicians to deliver quality care. When providing end-of-life care, physicians may recommend end-of-life care, which may be painful and, at times, depressive for patients, which may interfere with the care they receive. ANA states that nurses have to act with respect and compassion when dealing with individual patients. The major commitment of a nurse is towards their patients, not their families or parents. This provision is difficult to satisfy as what a patient wants may sometimes be different from what their family wishes for them. The nurse, under the ANA code of ethics, advocates, promotes and protects the rights and health of individual patients. These codes help to guide the way nurses deliver care to their patients.
Outcomes Plan
When the different principles and ANA code provisions are followed, it then becomes easy for physicians to deliver the best quality care to their patients. Observing ethical principles helps end-of-life care to be provided adequately, promoting individual health and ensuring their wishes are fulfilled. End-of-life care helps patients get better care and reach their death comfortably. However, end-of-life care comes with a lot of pain and discomfort for the patient, which does not follow the beneficence and nonmaleficence principle. Use end-of-life videos that children can watch to show them how they can handle the pain and other things they might be going through. Being surrounded by friends and families who show constant love is also essential for children to help them get through life. To resolve the dilemma, nurses, the child, and the parents must come up with a proper decision that mainly benefits the child, helping them become better and experience end-of-life care in the best way possible.
References
Akdeniz, M. Bulent, Y. and Kavukcu, E. (2021). Ethical considerations in end-of-life care. PubMed Central (PMC). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7958189/
Sultana, A., Tasnim, S., Sharma, R., Pawar, P., Bhattacharya, S., & Hossain, M. (2021). Psychosocial challenges in palliative care: Bridging the gaps using digital health. PubMed Central (PMC). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8655652/
Santoro, J. D., & Bennett, M. (2018, May). Ethics of end-of-life decisions in paediatrics: A narrative review of the roles of caregivers, shared decision-making, and patient-centred values. PubMed Central (PMC). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5981236/
Jofiro, G., Jemal, K., Beza, L., & Heye, T. B. (2018, September). Prevalence and associated factors of pediatric emergency mortality at Tikur Anbessa specialized tertiary hospital: a 5-year retrospective case review study. PubMed. https://pubmed.ncbi.nlm.nih.gov/30285667/
IntelyCare. (2023, October 6). Tips for practising the ANA code of ethics for nurses. https://www.intelycare.com/career-advice/tips-to-practice-the-ana-code-of-ethics-for-nurses/
write