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Diagnosis Disclosure and Child-Parent Relationship
Diagnosis disclosure can cause complex ethical issues, which nursing professionals need to address, even despite possible inconveniences or adverse effects. Diagnosis disclosure to minors is a more complicated issue as children and adolescents have the right to understand what is happening to them, but family involvement can hinder it. The paper aims to address the problem of child-parent relationships and their influence on diagnosis disclosure and the patients psychological well-being.
Clinical Situation
A 16-year-old patient was hospitalized due to restlessness, aggressive behavior, and manic excitement. After patients assessment and examination, as well as several sessions with the psychiatrist, the patient was diagnosed with Bipolar Disorder (BD) Type I. Patients family (38-year-old mother) asked the psychiatrist and me not to disclose the diagnosis to the patient as she was worried about his reaction to it, especially during the acute manic episode. As Wang, Peng, Guo, and Su (2013) point out, patients relatives can support nondisclosure of some of the diagnoses to exclude possible psychological morbidities. At the same time, the patient has the right to be informed about his/her diagnosis, possible consequences and outcomes of it, and the nursing profession should not support manipulations of others even though these manipulations are presented as the right decision by patients family.
The ethical dilemma took place in a small local hospital, where the majority of patients and clinicians were acquainted with each other. According to the patients mother, he went through a major depressive episode that lasted for four months before the recent manic episode. Her concerns were that if the patient found out about the diagnosis, his self-perception and general well-being would be shaken severely as BD is a chronic condition that requires lifelong treatment. However, both the psychiatrist and I insisted that the patient had the right to know the diagnosis and understand how the condition would influence his life. Eventually, we decided to disclose the diagnosis to the patient.
Ethical Characteristics
The dilemma was both a communication and an authority problem. First, diagnosis nondisclosure would result in less effective treatment, as the patient would not be able to undergo therapy successfully without knowing his diagnosis and being able to analyze his actions dictated by it. Second, the patients authority would be compromised, as well as the individuals right of freedom to make decisions on his/her behalf, without undue manipulation by others (Sarafis, Tsounis, Malliarou, & Lahana, 2014, p. 130). The patient would not be able to participate in decision-making entirely without understanding his diagnosis.
Ethical Principles
Several ethical principles were violated: autonomy, nonmaleficence, and fidelity. According to American Nurses Association (n.d.), autonomy is the agreement to respect anothers right for independent decision-making; nonmaleficence is the avoidance of harm; fidelity is loyalty and trustfulness, agreement to keep the promises made by a clinical professional (i.e., care for the patient). If we decided not to tell the patient the diagnosis, he would not be able to make decisions about his treatment independently (his mother as a person aware of the condition would participate in decision-making instead), he would be harmed by our inability to provide effective treatment (the lack of therapy where the diagnosis would be discussed), and we would not be loyal to our patient by concealing information about the condition.
Barriers to Ethical Practice
Among the barriers identified in this case were ageism and the lack of trusting relationships between the child and the parent. As the patients mother believed he was too young to understand the complexity of the condition , she felt there was no need to explain the diagnosis to him at least until he was 21. As Kagan (2012) points out, such discrimination is often perceived as reverential and protective by the parent. However, it can result in under- or overtreatment, depending on the parents decisions.
The lack of trusting relationships also resulted in parents inability to understand that the patient not only had the right but needed to participate in the decision-making process to understand what form of treatment would be more useful for him. A paternalistic approach, in this case, indicates that the mother was ready to limit her childs authority for his good , which would not be as harmless as she had expected.
The low level of awareness of mental illnesses and their stigmatization are also significant barriers; parents remain unaware of how these conditions influence personal life and how they are treated, which leads to an increased level of control from their side and the childs inability to participate in the treatment as an equal.
Ethical Theory
An ethical theory suitable for this case is principlism. Principlism is based on the four ethical characteristics significant for nursing (autonomy, beneficence, justice, nonmaleficence); using it, the nursing professional can evaluate whether the actions proposed by the parent align with these ethical principles or not (Butts & Rich, 2015). As such, it blends characteristics of other theories (consequentialism, deontology, etc.) to ensure that the issue is addressed at all levels. If any of these principles are challenged, the decision cannot be labeled as ethical because it undermines the basic rights or duties of the patient/nurse.
Self-Reflection
The presented ethical dilemma shows how relationships between people, stereotypes, discrimination, and stigmatization can undermine the working process and challenge nurses views on some issues. It shows that adolescents should be perceived as individuals capable of decision making equal to adults; their condition should not be viewed as an excuse to exclude them from the discussion of treatment. The nondisclosure of the diagnosis is a direct violation of the patients right to be informed about their condition and to give informed consent about the suggested treatment. In this case, the nurse and the psychiatrist disclosed the diagnosis to the patient, allowing him to participate in decision-making.
At first, I believed that nondisclosure would be the right way to address the issue because the patient was underage. His parent would be able to consult us about the proposed treatment about family and school context. However, the patients mother was reluctant to confirm that the nondisclosure would only last until the start of the therapy in several months. At first, I felt confident, but then I became suspicious and started to question parents suggestions after she had refused to discuss the importance of the therapy and pharmacological interventions. I was angry at the patients parents for several days because I understood how the lack of therapy or insufficient information during it would influence both the patient and the effectiveness of the treatment.
After a thorough examination of the patients symptoms, prognosis, and relationship with his mother, I realized that there would not be any voluntary decision making present if we did not contact the patient individually. The level of supervision demonstrated by his mother showed that the patients opinion would be at best merely taken into consideration but would not substantially affect the final decision. This situation made me think about the clinicians responsibility for patients and whether clinicians have the right to confront the patients family if the familys actions are potentially harmful? The answer to this question is yes . If I encounter a similar situation again, I will act accordingly, i.e. defend the patients right to participate in discussion and treatment, ensure that their authority is not compromised, and explain their condition to them. Without these actions, no respectful approach to the patient is possible.
Conclusion
As can be seen, ethical issues arise due to various problems: family relationships, age, discrimination, specific attitude to mental illnesses, etc. The clinicians responsibility is to address this issue professionally, paying attention to the patients rights and the influence of the ethical issue on treatment effectiveness. If a patient can take part in the decision-making, they should have this opportunity despite their age, the severity of the condition, and the familys opinion on how diagnosis disclosure will affect them.
It is important to understand how we, as nursing professionals, can address such problems. We can consult patients and their families about the importance of authority, independence, and fidelity in clinical decision-making and treatment. We should raise awareness of patient-centered care and its strengths, emphasizing that patients do not merely follow physicians orders anymore. It is crucial to understand patients personalities and backgrounds instead of examining only the condition and paying little attention to other (sometimes personal) factors.
References
American Nurses Association. (n.d.). Short definitions of ethical principles and theories: Familiar words, what do they mean? Web.
Butts, J. B., & Rich, K. L. (2015). Nursing ethics. New York, NY: Jones & Bartlett Publishers.
Kagan, S. H. (2012). Gotcha! Dont let ageism sneak into your practice. Geriatric Nursing, 33(1), 60-62.
Sarafis, P., Tsounis, A., Malliarou, M., & Lahana, E. (2014). Disclosing the truth: A dilemma between instilling hope and respecting patient autonomy in everyday clinical practice. Global Journal of Health Science, 6(2), 128-137.
Wang, D. C., Peng, X., Guo, C. B., & Su, Y. J. (2013). When clinicians telling the truth is de facto discouraged, what is the familys attitude towards disclosing to a relative their cancer diagnosis? Supportive Care in Cancer, 21(4), 1089-1095.
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