During my tenure as an NICU nurse, a situation arose regarding a newborn brought into the ER. It was discovered that the infant had a malignant brain tumor and, as various treatment approaches were considered, a team from oncology requested of the parents sample tissues of themselves and their child. It is widely accepted today that malignant tumors are usually genetically based and, when appearing in newborns, more certainly establish the malignancy as inherited (Puri, 2003, p. 653). The goal was research, but the parents viewed the request as a gross violation of their rights and the urgent circumstances. I myself was petitioned by the team to persuade the parents, as I had a prior relationship with them., and convince them that the procedures would in no way interfere with the treatment of their child. In short, I faced the ethical dilemma of potentially violating the patients’ caregivers’ rights in order to further research.
As the principles of the ANA obviously go to nursing ethics, it is nonetheless necessary to affirm that the oncologists’ intentions were both medically and ethically valid: “It is generally believed that new, less toxic curative treatments of childhood cancers should target the genetic alterations that drive these diseases” (Downing et al, 2012, p. 619). Put another way, to be guilty of a lack of discretion is not a violation of ethics. More to the point of the principles guiding me, the primary ethical duty of the nurse is for the welfare of the patient (ANA, 2014). Given the vulnerability of infants, this then encompasses that of the parents, if to a lesser extent. At the same time, the Code’s provision regarding conflict of interest clearly applied here. My duty is also to the physicians, in terms of my obligation to support my peers and superiors. Then, as the intended efforts were to go to better understanding and addressing the genetic factors of malignancy, the conflict was exacerbated by my responsibility to the parents. Lastly, the principle of the amended Code was highly relevant to this circumstance: “The nurse….practices with compassion and respect for the inherent dignity, worth and uniqueness of every individual, unrestricted by considerations of…the nature of health problems” (ANA, 2014).
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These considerations in place, I perceived that this was a complex situation, but one still open to solutions in which all ethics could be observed. I focused on the last principle in particular, in that the nature of the health problem is not permitted to interfere with compassionate care. More exactly, this translated to me as the nature of the oncologists’ request; my main duty was to securing the ease of both infant and parents, and I viewed this as more important than supporting the doctors and/or expressing loyalty to my colleagues. In essence, I maintained that my ethical duty resided in “keeping a middle ground,” and I addressed all parties in a way to achieve resolution. I made sure the oncologists’ understood how their request alarmed the parents, and advised them to give the situation time. I also saw that, as the infant had successfully come through an initial surgery, the parents initial shock had passed and I could approach them about the samples without offending them. The final outcome was, unfortunately, the death of the child, but the parents expressed to me that they were pleased in having been able to be of help for future situations as painful as their own.
In reflecting on all of this, it strikes me that the oncology team seriously lacked a critical understanding of ER realities, and especially when newborns are involved. This experience, in fact, led me to believe that nursing resources should be mandated for all involved in health care. I am aware that physicians have their own Codes, yet it seems these are not as ethically patient-centered, in terms of compassion and the totality of an incident, as that of nurses. It is in fact noted that physicians’ ethical codes place the least importance on respecting patient autonomy (Faden et al, 2013, S21), and this is relevant in regard to infants and parents. Consequently, I feel that the resources of the ANA, comprehensively addressing compassion and care, should be expanded to all arenas of health care service.
- American Nurses Association (ANA). (2014). Code of Ethics. Retrieved 21 Nov. 2014 from http://www.nursingworld.org/codeofethics
- Downing, J. R., Wilson, R. K., Zhang, J., Mardis, E. R., Pui, C. H., Ding, L., … & Evans, W. E. (2012). The pediatric cancer genome project. Nature Genetics, 44(6), 619-622.
- Faden, R. R., Kass, N. E., Goodman, S. N., Pronovost, P., Tunis, S., & Beauchamp, T. L. (2013). An ethics framework for a learning health care system: a departure from traditional research ethics and clinical ethics. Hastings Center Report, 43(s1), S16-S27.
