Crystal was a 7-year-old girl dying from a brain tumor, a brainstem glioma, which account for approximately 10% of all intracranial tumors in children.1 Brainstem gliomas are incurable; 90% of all affected children will die within two years of diagnosis. Crystal was a very bright little girl, having outlived her prognosis by 2 years. She had spent those four years undergoing radiation therapy, receiving massive doses of steroids, chemotherapy with frequent and lengthy hospitalizations for a variety of reasons including active treatment for severe infections requiring isolation and intravenous antibiotics. I met her when her tumor was showing signs of increasing in size despite aggressive treatment. She was an engaging, mischievous little girl, full of life and dying.
Crystal was wise beyond her years. Speak to any professional who works with cognitively intact children living with a chronic medical condition, and they will confirm that these children know much more than most would suspect.2 Crystal knew she had a brain tumor, she knew she was extremely large because of the steroids she had to take, she knew she was no longer receiving the same treatments, and she knew that her arms and legs no longer worked the way they had before. Crystal also knew other children who had tumors, including brain tumors, who had died, having lost a number of friends made on the oncology ward. Yet her primary caregiver and mother figure, her paternal grandmother, would not discuss her prognosis or her condition with members of the healthcare team or with Crystal. When approached she would start to wail and say over and over that she would not listen, her baby was going to get better. She refused to discuss Crystal’s condition. She also made sure all members of the healthcare team knew that she did not want us to discuss Crystal’s condition with her.
Crystal continued to decline and soon one of her greatest joys, coming to the dining room and sharing meals with staff, patients, and family members became more of a burden for her. She was having trouble swallowing and the possibility of aspiration became a fear for the clinical team. She could no longer walk and was incontinent, suffering one of her greatest humiliations, the need for diapers. She was restricted to her bed or wheelchair and yet she still maintained her engagement with staff and visitors, still maintained an active interest in those around her – during the day. At night Crystal was withdrawn, refused to let the nursing staff get her out of bed, refused to eat, and would often push things away if anyone tried to tempt her with food, books, or other activities. Crystal’s mood changes coincided with her grandmothers’ departure for the day.
Based on this case scenario to whom should we be true in considering our principles and truth telling? As staff, do we always tell the truth to everyone? As professionals caring for families, do we always follow the wishes of those families? When caring for a child, should we respect the child’s needs and what we think would be best for her? What follows is a basic discussion on the different possible principles that might guide us and conclude with the how we resolved the situation for Crystal, her grandmother and the staff.
This situation creates an untenable position for everyone involved in the care of a dying child, including
the child, the family and the healthcare providers. We know from earlier research that most children facing death are aware of their situation.3 As health professionals we often dance the fine line between truth and complying with the parents/guardians wishes, carefully choosing our words, giving vague responses, using euphemisms, or using techniques such as reflecting back when questioned.4,5
Legally and ethically parents/guardians have full authority and responsibility for their children. Health professionals have a legal and ethical responsibility to be truthful. When faced with parents/guardians who feel as strongly as Crystal’s guardian did, the result is often strong moral distress and confusion as to the best course of action.6,7,8,9,10
The issues about truth telling and the competent adult patient have been well described and commented upon in the literature. Debates centered on truth telling continue, typically focused on specific adult populations, diagnoses, and cultural or religious issues, but the accepted tenet remains, as we learned in kindergarten, "honesty is the best policy".11,12 Fan and Li state, “Truth telling to competent patients is widely affirmed as a cardinal moral and biomedical obligation in contemporary Western medical practice”.13 It is important to note, for our purposes here, all topics under discussion relate to all healthcare providers and one can just as easily replace medicine with nursing, or any other discipline in healthcare.
There is little specific to pediatrics and truth telling in the current literature. However, there is a growing body of literature exploring informed consent with older school age children and adolescents. Until age 18 children do not have legal authority without specific exceptions. It is however, current standard of practice that if a child is cognitively intact that assent is ascertained, typically from age 7 to age 18 years.14
Pellegrino states, “human capability for autonomous choices cannot function if truth is withheld, falsified, or otherwise manipulated”(p. 472). O’Connor states, “The health professional is constantly faced with first defining truth, often no mean task, and then with communicating it appropriately to patients and families”.15 However, if children and adolescents do not have legal authority does it matter if they are told the truth? Whose autonomy are we serving? Are we debating truth telling with children simply based on a moral ideal? In revisiting our case study it is clear that it is much more than just a moral ideal. It is a real and complicated dilemma seen all too often in pediatrics.
As a professional staff charged with caring for Crystal we ‘knew’ that she must be having some thoughts and feelings about the changes in her body and her functional status. We were fairly certain that Crystal was not in pain as she consistently denied pain; but staff felt unable to delve into these possible fears/feelings by the grandmother’s firm admonitions to not broach the subject of her prognosis with Crystal. How could we meet the needs of the staff, the grandmother, and Crystal? What were our ethical duties to our young patient, to her grandmother, to ourselves?
Beauchamp and Childress define a moral dilemma as a conflict between moral principles and rules, when a person must reconcile two or more alternatives yet cannot, while a practical dilemma is defined as a conflict between moral requirements and self-interests.16 Dilemma is “a situation in which conflicting principles allow no one answer to emerge as the right answer”.17 Ethical principles can guide health care professionals facing dilemmas to solutions that are considerate of all involved.
The ethical principles that may apply to this case include: a) respect for autonomy, b) beneficence, c) nonmaleficence, and d) ethics of caring. Miller states, “ When treating adults, the norm of respect for autonomy has general priority... in pediatric contexts, in contrast, the norm of beneficence has general priority...”18 Many take the emphasis on these principles are a good sign, indicating a movement towards a patient-centered care; however, in the world of pediatrics one could argue that our goal is family- centered care.19
One could argue that by abiding by the grandmother’s wishes we were emphasizing beneficence, we were respecting her authority and her position as parent figure to Crystal. Some may also argue that it was nonmaleficent to not discuss Crystal’s impending death with her, that she was too young to have to deal with such terrible news, and that it was best to ‘protect’ her as her grandmother wished. Nonmaleficence is ‘to do no harm”.20 Beneficence is defined as to do good for others. Positive beneficence is demanding more than just nonmaleficence, it is demanding that we do good, that we act in a positive way to help others. Utility of beneficence requires balancing benefits vs. burdens to reach the best possible result.
Autonomy is the principle of self-direction and in order to be able to make the appropriate decisions for oneself there are two conditions that most agree must be met: a) freedom to make choices (liberty), and b) the knowledge and ability to make informed choices (agency).21,22 Crystal is a seven-year-old little girl; many would argue that she did not need autonomy and that this principle did not apply to her or her situation. One could also argue that autonomy could be applied to the grandmother and the decisions she had made for her child. Although the grandmother would not discuss Crystal’s condition with any members of the healthcare team, there was no question that she knew that Crystal was in fact dying, that her brain tumor was progressing. To reach out a little further, one could also argue that we were denying the healthcare team autonomy in limiting their professional capacity and ability to talk to Crystal about her condition and pending death.
Ethics of caring emphasizes the relationship between the healthcare professional and the patient and family. The key is knowing the patient and family. As noted by Glass and Cluxton, “Sir William Osler captured the essence of the ethic of care when he said, “It’s more important to know what sort of patient has the disease, than what sort of disease the patient has” (p 236).30 This can be a difficult principle for some to embrace as it veers from the traditional principle-based approach to ethics, which is based on rights, duties, reason, and objectivity. Ethic of care is based on relationships, emotions, and engagement with patient and families. “Caring ...refers to care for, emotional commitment to, and willingness to act on behalf of persons with whom one has a significant relationship” (p. 369).24
A very real dilemma in ethic to care is the requirement and emphasis on relationship. This is a difficult dance in pediatrics as it is all too easy to blur professional boundaries with children. The emotional attachments can hinder objectivity, color decisions, and interfere with parent/child relationships. These relationships can also open the door to communication and enhance the parent/healthcare provider partnership in caring for the child. This relationship can help enlighten other members of the healthcare team to the needs and wishes of the child and family, as was the case with Crystal.
Interdisciplinary team meetings were held weekly and the subject of Crystal and her grandmother was always at the top of the list. How would we handle this, what was the best course of action, how could we meet everyone’s needs (Crystal, grandmother, and healthcare team)? The decision was to use the ethic of caring and work on building a relationship with Crystal’s grandmother. To date, the only interaction most had had with the grandmother was in the patient-family conference where she would cope by starting to wail, literally bringing the meetings to an end. We were able to discern that the grandmother was overwhelmed and intimidated by the healthcare team. For Crystal, the special relationships with members of the healthcare team helped to identify her very real need to talk openly about her condition and pending death. This dialogue allowed us to demonstrate to the grandmother how much Crystal knew of her condition but was scared to talk about due to her fear of upsetting her grandmother.
The healthcare team was able to take this information and develop a plan to work with the grandmother and with Crystal. Two members of the healthcare team made a contract with the grandmother to meet with her twice a week and answer any questions she had. She in turn would allow us to answer any questions that Crystal posed. As long as we did not initiate questions, we could discuss whatever subjects Crystal broached. When Crystal started the discussion about why her body wasn’t working right anymore, we were able to have a wonderful, albeit gut-retching discussion about her brain tumor, her life, and pending death. We were able to discuss the fact that her grandmother could not talk to her about her condition because she loved her so much and it made her sad, but that she knew how important it was for Crystal to have her questions answered and to talk about whatever was bothering her. We reached the point where grandmother would stay in the room and hold Crystal’s hand on one side of the bed while we sat on the other talking with Crystal about her dreams and plans.
In the time she had left to live Crystal was able to have bake sales (courtesy of an Easy Bake Oven©) and a lemonade stand. Along with puzzles she and her child life therapist glued together, Crystal sold her wares at her ‘roadside stand’ in the hallways. Crystal raised her own money to buy her sisters’ presents for birthdays and Christmases that would happen after her death. She was the princess at her “Hello Kitty” ball, complete with her ‘kings men’ escorting her in full tuxedos. She dictated her will and decided which of her toys would go to her sisters and other friends she had made at the hospital. She was able to talk about her fears; the most pressing that she would be forgotten. Crystal was able to tell us how she
wanted her funeral to be different than the ones she had been to, she only wanted pink flowers and she wanted happy music – which she chose. Crystal lived with us for 6 months from the time of her admission to her death and she has been one of my greatest teachers.
Any healthcare provider may face similar challenges when caring for any child with a life-threatening condition. As in this case, young children often know much more than what adults expect.4 The ability to acknowledge their fears and to provide a forum for expression and reassurance should be considered standard of care. Both the American Nurses Association’s Code of Ethics for Nurses and the American Medical Association’s Principles of Medical Ethics speak to the need to deal honestly with patients and families and to have their best interests at heart. Day and Benner note, “The nurse perceives herself as first caring about the family and primarily wanting to help them to understand the situation”(p. 78).23 It is important to note that this may mean, “adherence to moral absolutes (such as truth telling) in all cases and circumstances may do more harm than good” (p. 30).24
In closing, consider this quote from John Tyerman Williams in Pooh and the Philosophers, "his arms were so stiff from holding on to the string of the balloon all that time that they stayed up straight in the air for more than a week. What a brilliant picture of the way in which habit and emotion may cling to a belief that evidence and reason has rejected” 25(p. 15). This same paradox may give rise to many of the causes for moral distress. We need to continue to communicate and work as interdisciplinary teams to not only best care for our children and their families but to reinforce our own support network.
1 Fisher, P. G., & Carson, B. S. (1996). Management of brainstem glioma’s in children. Contemporary Neurosurgery, 18, 1-7. 2 Bluebond-Langner, M. The private worlds of dying children. Princeton, NJ: Princeton University Press; 1980. 3 Woodard, L. J., Pamier, R. J. (1992). The disclosure of the diagnosis of cancer. Primary Care, 19, 657- 663. 4 O’Connor, P. A. (1983). Truth telling in pediatrics – in degrees. Difficult Decisions in Medical Ethics, 139, 189-194. 5 Turkoski, B. B. (2003). A mother’s orders about truth telling. Home Healthcare Nurse, 21(2), 81-83. 6Corley, M. C. (2002). Nurse moral distress: A proposed theory and research agenda. Nursing Ethics, 9(6), 636-650. 7 Klein, S. M. (2009). Moral distress in pediatric palliative care: A case study. J Pain Symptom Manage
2009; 38:157e160. 8 Pellegrino, E. D. (2005). Some things ought never be done: Moral absolutes in clinical ethics.
Theoretical Medicine and Bioethics, 26, 469-486. 9 Pellegrino, E. D. (2001). The internal morality of clinical medicine: A paradigm for the ethics of the
helping and healing professions. Journal of Medicine and Philosophy, 26(6), 559-579).
10 Turkoski, B. B. (2003). A mother’s orders about truth telling. Home Healthcare Nurse, 21(2), 81-83.
11 Fulghum, R. (1986). All I really need to know I learned in kindergarten. New York: Random House.
12 Ruhnke, G. W., Wilson. S. R., Akamatsu, T., Kinoue, T., Takashima, Y., & Goldstein, M. K., et al.
(2000). Ethical decision making and patient autonomy: A comparison of physicians and patients in Japan and the United States. Chest, 118, 1172-1182.
13 Fan, R., & Li, B. (2004). Truth telling in medicine: The Confucian vies[views?]. Journal of Medicine and Philosophy, 29(2), 179-193. 14 American Academy of Pediatrics & Committee on Bioethics (1995). Informed consent, parental
permission, and assent in pediatric practice. Committee on Bioethics, American Academy of
Pediatrics, Pediatrics, 95, 314-317. 15 O’Connor, P. A. (1983). Truth telling in pediatrics – in degrees. Difficult Decisions in Medical Ethics, 139, 189-194. 16 Beauchamp, T. L., & Childress, J. F. Principles of biomedical ethics, 5th ed. New York. Oxford University Press, 2001. 17 Begley, A., & Blackwood, B. (2000). Truth telling versus hope: A dilemma in practice. International Journal of Nursing Practice, 6, 26-31. 18 Miller, R. B. (2006). On medicine, culture, and children’s basic interests: A reply to three critics. Journal of Religious Ethics, 34(1), 177-189. 19 Begley, A., & Blackwood, B. (2000). Truth telling versus hope: A dilemma in practice. International Journal of Nursing Practice, 6, 26-31. 20 Beauchamp, T. L., & Childress, J. F. Principles of biomedical ethics, 5th ed. New York. Oxford University Press, 2001. 21 Beauchamp, T. L., & Childress, J. F. Principles of biomedical ethics, 5th ed. New York. Oxford University Press, 2001. 22 Glass, E., & Cluxton, D. (2004). Truth telling: Ethical issues in clinical practice. Journal of Hospice and Palliative Nursing, 6(4), 232-242. 23 Day, L., & Benner, P. (2002). Ethics, ethical comportment, and etiquette. American Journal of Critical Care, 11(1), 76-79. 24 Begley, A., & Blackwood, B. (2000). Truth telling versus hope: A dilemma in practice. International Journal of Nursing Practice, 6, 26-31. 25 Williams, J. T. Pooh and the Philosophers: In which it is shown that all of western philosophy is merely a preamble to Winnie-the-Pooh. New York. Dutton Books, 1995.