Ethics In Truth-telling 2

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Ethics in Truth Telling: When Parent Becomes a Factor My M. Uong MUSC College of Nursing

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Ethics in Truth Telling: When Parent Becomes a Factor Patient C was 17 years old and had a serious condition of leukemia for almost 2 years. She had gone through many options of treatments, yet none were able to help with her condition. She could only live for few more weeks. She was full of life, even at the stage she was in and the pain she was enduring. At a point, she was brought home for end-of-life care by her mother and home care nurse who visited from time to time. Her mother ordered that no one tell this little girl of her prognosis. To emphasize the seriousness of this order, C’s mother restricted all visits from C’s father and C’s friends; she repeated this order at every home care nurse’s visit. C could sense that she was dying, but the fact that no one was talking to her about her terminal condition made her frustrated and confused. She asked the primary care nurse how much time she had left; however, every time her mother answered for the nurse by giving C false hopes that she would get better - that there was a bright future ahead of her. At times when her mother was not in the room, C expressed to the nurse that she was not afraid of death, that she would want to talk to her father and friends about dying. The nurse delivered these concerns to C’s mother, who refused to continue with the discussion. C became more depressed, asked for pain reliefs frequently and didn’t want to swallow anything. She ignored her mother’s cheerful comments and asked the nurse to turn music off in her room. When asked what was wrong, she told the nurse that “it’s just too much trouble to keep up a lie. Maybe it’ll be easier for my mother when I’m gone” (Turkoski, 2003) . There are many questions that arise from this ethical dilemma: Who is being harmed and how can that harm be reduced? (Turkoski, 2003) What are the minors’ rights in medical decision making? What personal and professional values conflicts are the nurse facing that are preventing

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her from telling the truth? What does the professional nursing code of ethics allow the nurse to do in this situation? This paper discusses these subject matters as well as the possible actions and outcomes of this dilemma. The Ethical Issue Although the adolescent is being harmed by the mother’s decision, the mother is experiencing anticipatory grief, a form of grief that is an “unconscious process of emotional response to the threat of loss” (Kehl, 2005) . The mother is a widow, and she does not have much of a support system. So in this case, the nurse has two patients in his/her care. The ethical issue is whether to respect the mother’s order or to make an exception to the adolescent’s autonomy to ease her emotional pain. Before going any further, we must understand the minor’s autonomy of this specific dilemma. The American Academy of Pediatrics has an established policy to encourage adolescents to be included in medical decision-making, “but the parental autonomy and parental right to give consent for a minor is the standard” (Maradiegue, 2003). We have to assume that the parents act in the best interests for their child, even if the child is cognitively and emotionally ready to handle the truth and even if the uncertainty is establishing additional stress to the child’s conditions (Gupta et al., 2008). Also in the state that C is living in, unless the minor is emancipated, married or in the armed services, they have no legal rights to specific knowledge or participation in decision-making (Turkoski, 2003). But what if the parent is not in the right state of mind to make the best decision for her child? The mother at that point doesn’t have a clue on how to cope with her anticipatory grief, let alone to help her child to cope with the knowledge of imminent death. Consider the situation and the factors involved, the ethical issue simplifies to a single question: to tell or not to tell.

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Nurses Actions The 3rd person that is involved in the dilemma: the nurse. The home care nurse is the only one that has a freedom to make a decision, since the mother is determined to keep her order and the daughter has no other choice but to play along with the lie. The home care nurse’s role is very important in this ethical dilemma, because any action he/she decides to take could alter the clients’ emotional pains to either a lesser or greater degree. The nurse should take the third step in processing a dilemma by doing values clarification. (Perry & Potter, 2009). The nurse needs to re-evaluate the professional values and assess the client’s values. In section 1.4, the ANA code of ethics states that “each nurse has an obligation to be knowledgeable about the moral and legal rights of all patients to self-determination” (White et al., 2001). So option 1 is to talk to the mother about what her values are in truth-telling. What is her religion? How would her religion justify the act of hiding the truth? Also, what is the cultural background of this family? Cultural values could greatly affect in decision-making. Research shows that most Asian cultures’ families always request the health care providers to keep the bad news silent (Hu, Chiu, Chuang, & Chen, 2002). The nurse needs to explain to the mother the professional code of ethics and what the nurse is obligated to do. Option 2 is to get supports for the mother’s anticipatory grief. In this dilemma, the mother is also at risk of psychological breakdowns and therefore must be put into the nurse’s care. The nurse can do so by following the Corr and Corr 10 guidelines for anticipatory mourning (Kehl, 2005). Get the end-of-life specialists to explain how a dying patient can come to “good death” if unresolved emotions are let out and wishes are fulfilled (Jones, McCullough, & Richman, 2005). The guidelines also suggest confronting the multiple stresses that the patient might be experiencing, approaching the patient with holistic perspective and confidence, and asking the patient’s social network to give more supports (Kehl, 2005). Option 3

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is to deliver the messages that C has expressed to the mother so that the mother could acknowledge the emotional pains that C is experiencing (Turkoski, 2003). Discuss that the adolescent has come to an age of having the ability to think abstractly, to draw and rank possibilities and to logically make decisions (Perry & Potter, 2009). The nurse should provide evidence that the dying patient is sensing that she does not have much time left. Option 4 is simply to tell the patient the truth of the condition she is in. The nurse should wait for the mother to leave the room and ask the adolescent to not disclose the information the nurse is about to share to her mother. After telling the truth, the nurse could encourage the patient to talk about death, for having a conversation about the process of dying is what she wants. The nurse should also suggest to help out whatever wishes that the dying patient might have. The Outcomes Option 1 would have a good outcome if the mother is open-minded and cooperative in expressing her personal values. Although, judging by the attempt that the home care nurse took, the mother had probably heard many opposing arguments to her order (Turkoski, 2003) and was determined to shut herself off from other opinions. Option 2 could anger the mother because she would not want to hear that she’s having a problem herself when her child is dying. On the other hand, if this option is carefully planned out and approached with cautions, not only would the mother be able to progress into the next task of the Worden’s Grief Tasks Model, that is working through the pain of grief (Perry & Potter, 2009). She would be able to help the nurse in making the dying patient’s last few weeks of living most productive and memorable. Option 3 has its advantages and disadvantages. The mother could probably change her mind if the attempt of getting the messages across is successful. However, telling the mother what the patient has said

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is violating the patient’s confidentiality (Turkoski, 2003). Breach of confidentiality needs to be carefully considered here. Option 4 would bring out tremendous controversial topics. First it would pile out to another ethical dilemma: beneficence vs. maleficence. Is this option for the good of the patient? Does it cause more harm to the patient? In short, does the end justify the means? If the outcome turns out to be that the patient develops lesser emotional pains and passes away in peace, then this is a beneficial action to take for the dying patient. However, if the mother finds out, this option could bring upon a court case of minor’s rights. The nurse could argue that the mother was undergoing a psychological disturbance and was incapable of making the decision for the child; however, strong evidences must be presented to back this up. Further research must be considered for option 4. The Best Action to Take Option 4 is risky and should be put last on the list of priorities. Option 3 would involve yet another legal controversial topic and should be put second to last on the list. Option 2 requires too much time and resources spent on the mother, while the main focus here is the dying patient in the stage of withdrawal. With the limited timeframe, a decision must be made quickly. Option 1 seems to be the best action to take. If the nurse could get the mother to sit down to discuss and exchange personal and professional values, the effect of empathy could establish trust, “unlocking concerns and communicating support for others” (Perry & Potter, 2009). Option 2 would probably become unnecessary if option 1 reaches its full potential. Discussion

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Because ethical issues never have right or wrong answers, which option to take usually depends on the personal values that the nurse possesses. Cultural values play a big part in the nurse’s decision-making. A study shows that health care providers (mostly nurses and some physicians) in Portugal, China and Greece believe that disclosure of terminal illnesses to the patient can cause psychological harm to the patient (Li et al., 2008). Truth-telling is an important virtue for all nurses. Truth-telling means to tell no lies and to perform no methods of deception (e.g.: nondisclosure, concealment). Nurses are to stay loyal to their patient, but also to have respect for their family and to not destroy this support system of the patient (Collis, 2006). The next time you are to face an ethical dilemma regarding truth-telling, consider these factors before making an important decision.

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References Collis, S. P. (2006). The Importance of Truth-Telling in Health Care. Nursing Standard, 20(17), 41-45. Gupta, V. B., Willert, J., Pian, M., & Stein, M. T. (2008). When Disclosing a Serious Diagnosis to a Minor Conflicts with Family Values. Developmental & Behavioral Pediatrics, 29(3), 231-233. Hu, W.-Y., Chiu, T.-Y., Chuang, R.-B., & Chen, C.-Y. (2002). Solving Family-related Barriers to Truthfulness in Cases of Terminal Cancer in Taiwan. Cancer Nursing, 25(6), 486-492. Jones, J. W., McCullough, L. B., & Richman, B. W. (2005). Truth-telling about terminal diseases. Surgery, 137(3), 380-382. Kehl, K. A. (2005). Recognition and Support of Anticipatory Mourning. Journal of Hospice and Palliative Nursing, 7(4), 206-211. Li, J.-Y., Liu, C., Zou, L.-Q., Huang, M.-J., Yu, C.-H., You, G.-Y., et al. (2008). To tell or not to tell: attitudes of Chinese oncology nurses towards truth telling of cancer diagnosis. Journal of Clinical Nursing, 17(18), 2463-2470. Maradiegue, A. (2003). Minor's Rights Versus Parental Rights: Review of Legal Issues in Adolescent Health Care. Journal of Midwifery & Women's Health, 48(3), 170-177. Perry, A. G., & Potter, P. A. (2009). Fundamentals of Nursing. St. Louis: Mosby Elsevier. Turkoski, B. B. (2003). A Mother's Orders. Home Healthcare Nurse, 21(2), 81-83. White, G., Badzek, L., & Thompson, A. (2001). Code of Ethics for Nurses with Interpretive Statements. Washington: American Nurses Publishing.