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 patient’s psychological well-being.
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A 16-year-old patient was hospitalized due to restlessness, aggressive behavior, and manic excitement. After patient’s assessment and examination, as well as several sessions with the psychiatrist, the patient was diagnosed with Bipolar Disorder (BD) Type I. Patient’s 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, patient’s 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 patient’s 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 patient’s 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.
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 patient’s authority would be compromised, as well as “the individual’s 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.
Several ethical principles were violated: autonomy, nonmaleficence, and fidelity. According to American Nurses Association (n.d.), autonomy is the agreement to respect another’s 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 patient’s 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 parent’s decisions.
The lack of trusting relationships also resulted in parent’s 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 child’s authority “for his good”, which would not be as harmless as she had expected.
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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 child’s inability to participate in the treatment as an equal.
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.
The presented ethical dilemma shows how relationships between people, stereotypes, discrimination, and stigmatization can undermine the working process and challenge nurse’s 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 patient’s 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 patient’s 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 parent’s suggestions after she had refused to discuss the importance of the therapy and pharmacological interventions. I was angry at the patient’s 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 patient’s 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 patient’s opinion would be at best merely taken into consideration but would not substantially affect the final decision. This situation made me think about the clinician’s responsibility for patients and whether clinicians have the right to confront the patient’s family if the family’s 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 patient’s 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.
As can be seen, ethical issues arise due to various problems: family relationships, age, discrimination, specific attitude to mental illnesses, etc. The clinician’s responsibility is to address this issue professionally, paying attention to the patient’s 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 family’s 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 physician’s 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.
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! Don’t 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 family’s attitude towards disclosing to a relative their cancer diagnosis? Supportive Care in Cancer, 21(4), 1089-1095.