Decision-making is an integral part of a registered nurse's daily routine at the workplace. While there are many straight forward decisions to be made, there are also those decisions that do not have an outright wrong or right. It is an even bigger ethical dilemma when the decision involves allowing someone to live on or ending their lives. In most cases, for the terminally ill, the quality of life could be so low filled with pain, difficult breathing, vegetative states, and other debilitating conditions. Weighing the benefits of such life against what the family or the patient wishes then becomes a conundrum. In some instances, a nurse must choose only one patient to save due to the constraint of equipment or personnel. A nurse must, therefore, evaluate critically and work with a team of health care workers and family to make an appropriate decision. She must, therefore, be well conversant with the various theories or approaches and principles that could guide effective decision-making in such moments.
The Dilemma
For the registered nurse, ethically right is synonymous with morally right. Most of the time, the nurse picks up what is morally right and has a beneficial outcome for the patient and easily administers it. However, there are circumstances whose ethical decision pits the nurse against the desire of the patient or the desire of the family (Karnik & Kanekar, 2016) . In some circumstances, a nurse finds that the choice is between saving one life and losing another because of personnel or equipment deficiency. Whatever the case, a nurse must use various approaches and principles to reach a sound judgment and decision.
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Case Study: T.J. in Code Grey
In this case, T.J. was born in the hospital by a 20-year-old mother who decided early in the pregnancy to give out the baby for adoption. The initial glance at the baby indicated that she was an appropriate-for-term baby. She looked healthy and well-nourished. However, a detailed examination, supported by the CT scan, revealed that T.J. had a condition that is known as hydranencephaly, a missing brain vault. This condition paralyzed T.J.'s ability to regulate her temperature and sugars, amongst other congenital anomalies. It also meant that her life would be a very short one. For this reason, she had to be kept in an isolated nursery bed with thermoregulation. Holding her out for a few minutes would drastically compromise her body temperature. She also vomited most feeds and yet could not withstand the NGT feeding, especially the bringing up of wind. The needle-pricks that were necessary for electrolyte and sugar monitoring were also great torture to her. Janet, her primary nurse, Jeanne, and other caregivers could not agree on what was the best way out in the care of T.J.
The dilemma in T.J.'s case was in the care she received. Feeding by NGT and bringing up the wind seemed tortures to T.J, who wailed so much at these experiences. The necessary needle pricks she received for laboratory equally initiated sharp pitched cries. Even though the treatment that T.J was receiving was necessary, it was both painful and also not expected to prolong her life. The main conflict amongst T.J.'s caregivers was, 'what were the benefits of all the painful interventions that T.J. was receiving?' Would it not be better just to hold and comfort her and allow her to die peacefully? After all, no one expected T.J. to survive the first few weeks of her infancy.
The Dilemma in the Care for T.J
T.J.'s life entirely depended on her caregivers. There was no mother nor social care to help come up with a decision. The physicians who came to visit and the nurses like Janet who took care of T.J. were wholly responsible for making the appropriate decision on T.J.'s case (Ethical Issues in End-of-life Care, 2019 ). These decisions could appropriately be reached through a justice approach or a utilitarian approach.
The nurse's code demands that optimal care is given to patients irrespective of, among other things, the nature of course or prognosis expected. The justice approach, preferred by nurse Janet, anchors its decision-making process on entitlement and the right to wholesome care (Karnik & Kanekar, 2016 . This approach demands that T.J. be treated fairly. She is entitled to complete and continuous care and must receive equal treatment irrespective of the ordeal and expected prognosis.
In this respect, while T.J. Lacks personal autonomy to make a decision or a close relative to make that decision for her, the caregivers are obligated to give T.J the best available care up to the terminal end (Ethical Issues in End-of-life Care, 2019) . This means that if NGT feeding is the only way to provide nutrition for T.J, then it must be maintained irrespective of the pain and un-comfortability that comes with it. It also means that just like all other patients, she must receive her treatment and laboratory checks as she is entitled and has the right to this care. Therefore, when considering the justice approach, T.J will be taken care of with the available technology and medication and to prolong her life until the natural course of the congenital anomaly determines otherwise.
On the other hand, making a decision based on what is considered to have the best or most agreeable outcome is considered the utilitarian approach (Karnik & Kanekar, 2016 . This is what is preferred by nurse Jeanne. The end result, in this case, is what becomes the principal factor for consideration. Using this approach, a few points will have to be looked at in T.J.'s case. Feeding T.J. elucidates pain. She either vomits the feeds or cries for pain from the wind. This, for a utilitarian approach, is not a good outcome. While needle pricks will avail a blood sample for laboratory analysis, they make T.J shriek with pain. In contrast, the pain afflicted T.J. will not lead to a prolonged life or the resolution of her condition. This also is not a favored outcome for the utilitarian approach, which expects an intervention to give some degree of comfort and raise her chances for survival. Holding T.J. in the arms, which compromises her body temperature, and withholding feeds, and the needle pricks will lead to the comfort of the baby. Even though it means that T.J.'s demise will be hastened, for a utilitarian approach, this is inconsequential since, after all, T.J. is destined to an early death. Therefore, the utilitarian approach would embrace the caseation of these interventions as the best care outcome for T.J. Considering that T.J. has no known cure and has a very short lifespan, the utilitarian approach may the best one for her end-of-life care. While the early demise is a definite course in her condition, the short lifespan could be lived without pain if the utilitarian approach is used by her caregivers to make a decision.
Ethical Principles in Resolving T.J's Case
The most embarrassing situation for baby T.J is the lack of a verbal or written directive on the type of end of life care that should be administered to her. This, therefore, means that
whatever decision will be made regarding her care remains the prerogative of the caregivers in the hospital (Writers, 2020) . The main form of treatment T.J is receiving currently appears to be making more harm than good. Furthermore, the expected lifespan is extremely diminished by the condition she has. This, therefore, calls for a deep discussion, and the most applicable principle in these discussions is the principle of beneficence at the end of life care.
In the principle of beneficence, the greatest factor considered is what benefits the patient most. In most cases, a patient's prior directive becomes the most beneficial outcome (Bester, 2018). This, for instance, means that if the patient had chosen to sign a do-not-resuscitate form, then that becomes the most beneficial outcome. In T.J.'s case, discussions should be held by the whole health care team to determine what a good outcome means for T.J. Some aspects of discussions should include; how effective is the management of any portrayed symptoms, especially in the lack of direct patient or indirect autonomy. The baby's future welfare and the implications of keeping T.J to the caregivers will also need to be discussed. Finally, it is important that whatever outcomes and decisions made on these deliberations be seen as a shared responsibility even if they are not arrived at unanimously.
In T.J.'s condition, the issue of what is good needs a critical evaluation. For an instant, one question that needs to be answered is what is the quality of life that T.J is leading currently? What would have been her choice of care if she had the ability to decide? Painful feeds can be considered a very devastating situation for the patient. Whereas it could be argued that the nutrition she gets from the feeds overrides the ordeal, it still remains a great source of distress that baby T.J undergoes. Considering that baby T.J. does not have the parts of the brain essential for intellectualism, the best option would have been body touch as a way of communication and to establish a human bond ( Pirschel , 2016) . However, her inability to regulate her own temperature means that she has to live in isolation in the nursery bed permanently. Added to this is the fact that the only other human touch baby T.J experiences comes with more pain in the form of needle pricks. This means that while the intentions of the care administered to baby T.J. are aimed at improving her life, she is, in the real sense living a very distressing life. Since all these interventions do not have a chance of improving the quality of life experienced by baby T.J., they may be considered of minimal benefit.
Conclusion
Ethical considerations are a routine part of nursing care in their day to day activities. The ethical implications surrounding the end of life care presents an additional challenge to the registered nurse. The decisions here are not right or wrong. Most of the time, the choice to prolong life is outweighed by the quality of life itself. How much care is essential care in terminal cases is difficult to balance equation. However, the approach and decision making in end of life care needs to be done as a teamwork effort. Discussions on the pros and cons of the applicable-approach and principles of end-of-life care that suit every situation need to be looked at and evaluated independently. The autonomy of patients and families is important to be considered in every step of decisions made.
References
Bester, J. C. (2018). The harm principle cannot replace the best interest standard: Problems with using the harm principle for medical decision making for children. The American Journal of Bioethics , 18 (8), 9-19.
Pirschel, C. ONS, Staff Writer/Producer. (, 2016). Ethical Dilemmas at the End of Life. Retrieved December 06, 2020, from https://voice.ons.org/news-and-views/ethical-dilemmas-at-the-end-of-life
Ethical Issues in End-of-life Care. (2019, December 17). Retrieved December 06, 2020, from https://onlinedegrees.bradley.edu/blog/what-ethical-issues-can-arise-with-end-of-life-care/
Karnik, S., & Kanekar, A. (2016, May 5). Ethical Issues Surrounding End-of-Life Care: A Narrative Review. Retrieved December 06, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4934577/
Writers, R. (2020, November 30). Advance Directives: NCLEX-RN. Retrieved December 06, 2020, from https://www.registerednursing.org/nclex/advance-directives/
