Parental Refusal of Treatment: Ethical Decision-Making Case Study

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Clearly State the Problem

Various challenges in nursing practice are associated with cultural peculiarities. The Jehovah’s Witnesses, the religious Christian movement representatives, oppose blood transfusion due to the passage of the Bible that prohibits blood consumption (Chojnowski, Janus, Bliźniewska, Robak, & Treliński, 2016). In the given case, the parents of a 14-year-old male patient with acute lymphoblastic leukaemia (ALL) refuse providing chemotherapy since it may require further blood transfusion to eliminate the myelosuppressive effect of chemotherapy.

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From the social and legal points of view, the problem is associated with the potential guardianship over this patient, which is likely to help him to have a remission, while his parents will still be opposed. At the same time, it is an ethical problem for a nurse to decide on the best option that will be most relevant to the patient’s health outcomes and quality of life, considering the views of parents as well (Zhou, Mohsen, Khan, & Guthrie, 2014). This paper focuses on scrutinizing the specified case in a comprehensive manner based on the available scholarly literature and legal documents.

Get the Facts

ALL is a malignant lesion of the hematopoiesis system accompanied by an uncontrolled increase in the number of lymphoblasts. It is manifested by anemia, symptoms of intoxication, increased lymph nodes, liver, and spleen, bleeding, and respiratory disorders. The basis of the treatment is chemotherapy that has two stages such as intensive care and maintenance therapy. Along with chemotherapy, the alternative options are composed of immunochemotherapy, radiotherapy, bone marrow transplantation, and other techniques. The treatment plan for ALL is individually tailored to the level of risk in the given patient who is in a critical condition. The social context is characterized by the moral right of parents and that of care providers to decide for the child. Since they are Jehovah’s Witnesses, their refusal of blood transfusion presents a challenge to healthcare practitioners.

As for the plan of care, in order to come up with the best solution, a range of consultations is required with the patient’s parents, the haematologist, the chemotherapist, and the oncologist. It is essential to determine the most adverse and positive impacts of the chemotherapy and blood transfusion (Harding, 2013). Also, consistent with Grace (2018), it is important to identify the criticalness of the current situation along with the role of any protractions in the treatment.

Consider the Fundamental Ethical Principles

The paramount ethical principles that should be taken into account while considering the present case are beneficence, non-maleficence, justice, and autonomy. The latter implies that decision-making should involve no coaxing or coercion to allow patients have the autonomy of intentions and actions (Cashin et al., 2017). However, the given patient is underage, which means that his parents are responsible for his treatment. In this connection, it is critical to make sure that they are informed about all the aspects of ALL, their son’s health state, and any other related issues. Even though the parents’ approach to the problem is identified, it is still possible that additional information may change their attitudes.

In terms of beneficence, it is of great importance to ensure that the medical procedures comply with the requirement of providing the involved patient with appropriate care (Kangasniemi, Pakkanen, & Korhonen, 2015). In this regard, the patient needs to achieve remission that largely determines his future survival. With the aim of sticking to the mentioned ethical principles, caregivers are expected to apply specific knowledge and skills as well as consider the patient’s peculiarities. The key benefits may be regarded as the improved health condition, enhanced quality of life, and balance between the treatment needs and parents’ cultural views.

The principle of beneficence is inextricably related to non-maleficence in the context of safety provision to patients. As stated by Cashin et al. (2017), Registered Nurse Standards for Practice developed by the Nursing and Midwifery Board of Australia prescribe the engagement of patients in therapeutic care by actively fostering a culture of safety and patient-centered care. Applying the mentioned principle to the case under discussion, one may note that the possible risks that may be encountered are the resistance of the patient to the treatment, negative emotional state, and uncertain overall outcomes. Therefore, harm minimization should be targeted by nurses as the core goal while deciding on the proper solution (Cashin et al., 2017). The principle of justice should also be applied as it refers to fair decision-making and compliance with the existing laws. This aspect will further be discussed in detail in the section that focuses on the problem from the point of the legal framework.

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The theory of consequentialism that proposes the value of action and their outcomes seems to be a relevant option to employ to the given case. Staunton and Chiarella (2017) claim that this theory emphasizes that the consequences of decisions have moral value and should be taken into account while selecting the solution. In this case, the focus should be made on potential consequences of decisions, which will allow preventing inappropriate outcomes and minimize risks. The clinical and social appeals as the main elements of the theory should be aligned with the given case, thus developing a rational process of ethical reasoning.

Consider How the Problem Would Look From Another Perspective or Using Another Theory

The key stakeholders are the parents of the patient and care practitioners who manage him. As it can be seen from the case scenario, the patient himself is not able to decide on the treatment; therefore, his parents are eligible to take this responsibility. The authority and power of parents are associated with their legal status and moral rights (Staunton & Chiarella, 2017). The interests of both parties target treatment for the patient, while parents also saliently want to follow their religious beliefs that contradict remission achievement. Both parties have urgent and legitimate interests, the reflection on which may refer to the theory of intrinsicalism – inherently made decisions based on one’s beliefs (Staunton & Chiarella, 2017). Nevertheless, the application of such a theory requires seeking for a minimally myelosuppressive therapy.

Identify the Ethical Conflicts

The code of ethics sets a range of ethical principles for nurses the compliance with which is declared as critical to provide quality care. With regard, to the given situation, there is an ethical conflict between the idea to treat the patient using chemotherapy and ensure the principle of cultural practice (Johnstone, 2016). In this connection, it is important to point out the fact that the need to help the patient and the religious beliefs of his parents cause this ethical conflict.

According to the recently updated code of conduct for nurses in Australia, cultural practice and respectful relationships should be provided via culturally safe and respective care (Nursing and Midwifery Board of Australia, 2018). However, since these beliefs may damage threaten the patient’s health, they also seem to contradict the principle of avoiding harm (Douglas & Sebba, 2016). In the context of the professional behavior principle, it is required that a nurse should practice integrity and consider the interests of patients (Nursing and Midwifery Board of Australia, 2018; West, 2014). However, the behavior and interest of parents seem to be adverse to the patient, while professional boundaries imply that nurses should avoid conflicts, which is impossible in this case.

Consider the Law

If the decision is associated with the idea of seeking guardianship over the patient, then it is critical to pay attention to the legislative framework related to such situations. The Health Practitioner Regulation National Law (WA) Act 2010 regulates the relationships between practice and nursing policy, focusing on safe and effective care and promoting cognizance of the legislation (Government of Western Australia, 2018). The legal proceedings of the mentioned document state that nurses are expected to provide respect to the rights of patients and their families by being sensitive to their personalities, values, and culture (Petrini, 2014). The Health Practitioner Regulation National Law (WA) Act 2010 also pinpoints that nurses should take the responsibility for their patients’ health outcomes, advocating for the required change and involving them in the care process.

The review of the available precedents illustrates a similar case that was resolved by referring to the court. In particular, Re R (A minor) (1993) 2 FLR 757 shows that the parents of a child diagnosed with B-cell lymphoblastic leukemia also were Jehovah’s Witnesses who refused to perform blood transfusion (Bainham, 2016). Nevertheless, since the child’s condition was critical, and the specified treatment was the only relevant option to save his life, the court decided that life-threatening situations may be resolved without the parents’ consent (Bainham, 2016). It was emphasized that such a solution is appropriate only in case if other treatment variants are recognized as ineffective. Thus, the legislative principles require the compliance with the existing laws and regulations, while critical situations and a lack of alternatives make it possible to act in accordance with the patient’s health needs even if his parents do not agree.

Make the Ethical Decision

The ethically-viable option for the given case is to explain to the parents that the condition of their child is life-threatening and, therefore, blood transfusion is critical. In case they still will be resistant, it is appropriate to act in the interests of the child in terms of safety, quality, and effectiveness prescribed by the code of conduct (Boyd, 2015; International Council of Nurses, 2012). Since blood transfusion may be vital to him, it is required to refer to the local authority and the court, so that the right to provide the mentioned procedure will be obtained. At this point, it is significant to keep the parents informed of all treatment measures, including their benefits and risks.

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Speaking of potential ways to resolve the clarified ethical conflicts, it seems essential to refer to the domain of the principle three regarding cultural care that implies acting with professional integrity (Nijhawan et al., 2013). By establishing proper relationships and communication with parents, it is important to make sure that their decision is informed with evidence-based information. Another way is to seek guardianship and manage the patients in terms of his health needs. Ultimately, Emadi, Bade, Stevenson, and Singh (2016) offer a new minimally-myelosuppressive asparaginase-containing induction treatment. According to the above option, blood transfusion is not required after chemotherapy that satisfies Jehovah’s Witnesses’ religious views.

Evaluate the Decision

The abovementioned solution to the dilemma between practitioners and Jehovah’s Witnesses regarding the blood transfusion for the child of the latter seems to be a relevant solution that pays attention to legal, ethical, social, and medical aspects. The comprehensive consideration of the mentioned issues makes it evident that both ethical and legal frameworks support the idea that an overwhelming need for blood transfusion allows healthcare providers to decide independently from parents. Thus, the offered solution is a feasible and relevant option for the patient’s needs.

References

Bainham, A. (2016). Parents and children. New York, NY: Routledge.

Boyd, K. (2015). The impossibility of informed consent? Journal of Medical Ethics, 41(1), 44-47. doi:10.1136/medethics-2014-102308

Cashin, A., Heartfield, M., Bryce, J., Devey, L., Buckley, T., Cox, D.,… Fisher, M. (2017). Standards for practice for registered nurses in Australia. Collegian, 24(3), 255-266. Web.

Chojnowski, K., Janus, A., Bliźniewska, K., Robak, M., & Treliński, J. (2016). Long‐lasting extreme anemia during the therapy of acute lymphoblastic leukemia in a Jehovah’s Witness patient. Transfusion, 56(10), 2438-2442. Web.

Douglas, G., & Sebba, L. (2016). Children’s rights and traditional values. New York, NY: Routledge.

Emadi, A., Bade, N. A., Stevenson, B., & Singh, Z. (2016). Minimally-myelosuppressive asparaginase-containing induction regimen for treatment of a Jehovah’s witness with mutant IDH1/NPM1/NRAS acute myeloid leukemia. Pharmaceuticals, 9(1), 12-19. Web.

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Government of Western Australia. (2018). Health Practitioner Regulation National Law (WA) Act 2010. Web.

Grace, P. J. (2018). Nursing ethics and professional responsibility in advanced practice (3rd ed.). Burlington, MA: Jones & Bartlett Learning.

Harding, T. (2013). Cultural safety: A vital element for nursing ethics. Nursing Praxis in New Zealand, 29(1), 4-11.

International Council of Nurses. (2012). Code of ethics for nurses. Web.

Johnstone, M. J. (2016). Bioethics: A nursing perspective (6th ed.). Chatswood, NSW: Elsevier Australia.

Kangasniemi, M., Pakkanen, P., & Korhonen, A. (2015). Professional ethics in nursing: An integrative review. Journal of Advanced Nursing, 71(8), 1744-1757. Web.

Nijhawan, L. P., Janodia, M. D., Muddukrishna, B. S., Bhat, K. M., Bairy, K. L., Udupa, N., & Musmade, P. B. (2013). Informed consent: Issues and challenges. Journal of Advanced Pharmaceutical Technology & Research, 4(3), 134-140. Web.

Nursing and Midwifery Board of Australia. (2018). Web.

Petrini, C. (2014). Ethical and legal aspects of refusal of blood transfusions by Jehovah’s Witnesses, with particular reference to Italy. Blood Transfusion, 12(1), 395-401. Web.

Staunton, P. J., & Chiarella, M. (2017). Law for nurses and midwives (8th ed.). Chatswood, NSW: Elsevier Australia.

West, J. M. (2014). Ethical issues in the care of Jehovah’s Witnesses. Current Opinion in Anesthesiology, 27(2), 170-176. Web.

Zhou, L., Mohsen, A., Khan, M. A., & Guthrie, T. (2014). Acute lymphoblastic leukaemia in a Jehovah’s Witness: A management dilemma. Journal of Chemotherapy, 26(3), 184-186. Web.

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IvyPanda. 2021. "Parental Refusal of Treatment: Ethical Decision-Making." July 5, 2021. https://ivypanda.com/essays/parental-refusal-of-treatment-ethical-decision-making/.

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