It’s My Life: An Ethical Analysis of Parent-Adolescent Decision-Making Conflict Over Cancer Treatment

One of the most challenging situations for health care providers arises when a teenager refuses treatments that their parents or legal guardians insist on, believing or having been told by the clinician, that these treatments are lifesaving or life-prolonging. Although in most countries, parents generally have legal authority for persons less than 18 years old,1 it is widely recognized from an ethical standpoint that adolescents should play an active role in decision-making.2–4Therefore, addressing adolescent treatment refusals requires a comprehensive exploration of the influencing factors. This is especially important when the risks of not treating are significant, or when the benefits of the proposed treatment are uncertain. Applying an ethics-driven approach helps maximize benefits while minimizing potential harm both for the person at the center of the treatment decisions and for those closest to them who may be impacted by the outcome. What qualifies as a benefit or harm is often influenced by the context, history, experiences, and values of those involved. Thus, exploring the situation using an ethical lens helps identify important details and nuances, providing clarity about what is at stake and for whom.The first author was enrolled in a nursing ethics course in an Armenian university as part of her education. The course was taught by the fourth author. Participants in the course were encouraged to apply tools of ethical analysis to a problem they had encountered in practice. Here, we use a significantly modified, deidentified situation that she and her interdisciplinary colleagues encountered in an oncology setting in Armenia. We saw this as a way to highlight the ethical aspects of such situations and propose potential courses of action. An adolescent patient, M.L., wanted to refuse further treatments for relapsed neuroblastoma despite pressure from his parents and the recommendations of the oncology team to pursue treatment. We include the current state of the science related to neuroblastoma in our discussion and note which diagnostics and treatments were not available to M.L. Additionally, when details about M.L.’s case are unavailable, we suggest approaches for assessing, analyzing, and incorporating such details.Jonsen and colleagues’ 4-topic method of problem analysis5 is used to explore the case of M.L. This method is variously known as the 4-topic, 4-quadrant, or 4-box approach. Although other analytic methods or models may also facilitate comprehensive consideration of relevant medical and contextual details, the 4-topic method aligns structurally with clinical and diagnostic decision-making models, including the nursing process, differing mainly in its focus on ethical rather than clinical decision-making. In this case, we are concerned with understanding and resolving what presents as a conflict among M.L., his parents, and the medical team.We provide a description of M.L.’s case, then we draw on bioethics and nursing ethics literature to parse out key elements of the case and uncover hidden aspects. We use the 4-topic method to structure our analysis and examine what is known and what remains unclear. We highlight aspects critical to good nursing practice, stressing the importance of interdisciplinary collaboration in resolving such complex cases. Finally, recognizing that nurses may be the trusted confidants of patients like M.L. who face difficult decisions, we offer strategies and resources to help nurses support the patient and their family/support persons, as well as strengthen family cohesion.M.L. is a 14-year-old boy admitted to the pediatric oncology unit of a metropolitan hospital in Armenia with vomiting, abdominal pain, and abdominal distension. His past medical history is significant for stage L2 neuroblastoma located on the right adrenal gland and treated with right adrenalectomy, partial right nephrectomy, para-aortic lymph node dissection, and subsequent adjuvant chemotherapy, with no evidence of disease for the past 2.5 years. Subsequent computed tomography imaging reveals gross hepatomegaly and a massive, calcified retroperitoneal mass infiltrating the liver, portal tracts, and adjacent small vessels. A biopsy is performed, which confirms a diagnosis of relapsed stage L2 neuroblastoma.There had been no evidence of disease during M.L.’s posttreatment surveillance imaging and prior to his current hospitalization. He believed, or assumed, that his neuroblastoma was “cured” and would not recur. Therefore, the diagnosis of relapsed neuroblastoma was a complete shock. Unlike his previous treatment experience, when he agreed to the recommended surgery and chemotherapy, M.L. is now opposed to any further treatment. He is also refusing additional diagnostic procedures, especially painful procedures like surgery and lumbar punctures. His parents, however, argue that he should pursue further treatment in hopes of disease remission and the possibility of cure, especially given that he has had 2 years in which to engage in school and recreational activities with his friends. But M.L. is visibly angry and firmly states, “This is my life, I decide for myself whether to receive treatment or not.”During a meeting with a psychologist to explore his decision to not pursue further treatment, M.L. explains that he does not want to go on feeling as he does now, to be confined to the hospital, endure bothersome side effects, or undergo painful procedures. He describes his prior treatment course as “very difficult,” citing prolonged and severe symptoms during several cycles of adjuvant chemotherapy. Frequent episodes of neutropenia required him to isolate from his friends and community as well as suspend normal activities like attending school and playing sports to prevent opportunistic infections, which was especially challenging for him. As a very social adolescent, M.L. emphasizes that peer relationships and social activities are central to his life. He also expresses significant frustration and sadness at the disruption brought by treatment, especially given his current belief that the disease could keep recurring.In contrast, M.L.’s parents, who are his legal decision-makers until he reaches the official age of majority (18 years), insist that all available potentially curative treatments be pursued. They hope that M.L. might achieve remission and have pressed the medical team to ensure treatment is carried out, despite M.L.’s refusal, because he “doesn’t understand what is at stake.” M.L. appeals to Anya, the nurse with whom he developed a relationship during his prior treatments: “Can’t you help me make them understand that I don’t want any more procedures or treatment? I don’t believe I can be cured.”More common in young children than people over 10 years of age, neuroblastoma originates from immature nerve cells and most often develops in the adrenal glands; but it can also manifest in the abdomen, chest, neck, or spine. Each child’s presentation of neuroblastoma is unique, and the tumor’s behavior can vary widely. In some cases, neuroblastoma may regress spontaneously, while in others, it can be highly aggressive, complicating efforts to predict clinical outcomes.6 Prognosis is influenced by several factors, including the child’s age, tumor biology, and genetic markers such as the amplification of the MYCN gene, an oncogene. Amplification of the MYCN, the criterion standard for assessing risk level, means there are more copies of the gene in a cell than normal and this increases the risk of disease recurrence and level of disease aggression. These factors additionally impact the treatment approach. Notably, MYCN tests are not yet available in Armenia.Stage L2 neuroblastoma refers to a tumor that is circumscribed to a specific area (locoregional), has 1 or more image-defined risk factors (IDRFs), and has no discernable metastases. Image-defined risk factors—for example, the tumor is near a major blood vessel—indicate an increase in risks associated with surgery. Stage L2 as defined by the revised 2021 Children’s Oncology Group (COG) neuroblastoma risk classifier (version 2), which is now the criterion standard,7 incorporating genomic biomarkers and age to assess prognosis and guide treatment strategies for children with neuroblastoma.If neuroblastoma returns after a period of remission, it is called a recurrence or relapse. Treatment options for relapsed neuroblastoma depend on several factors, including the initial stage and risk classification, the location of the recurrence, treatments previously used, and in M.L.’s case, treatments that are available. For relapsed stage L2 neuroblastoma, therapy typically involves a combination of chemotherapy, surgery, and radiation therapy. Other treatment options, when available, might include high-dose chemotherapy followed by a stem cell transplant or monoclonal antibody therapy. Since relapsed neuroblastoma can be resistant to treatment, clinical trials investigating newer therapies, such as other monoclonal antibodies, chimeric antigen receptor T-cell therapy,8 or novel anticancer drugs, might be considered where accessible and with careful informed consent/assent.The 4-topic method uses 4 foci of inquiry (medical indications, patient preferences, quality of life, and contextual features) to facilitate the incorporation of all aspects of a situation. These topics “help clinicians understand how the ethical principles connect with the circumstances of the clinical case”5(p3) and the patient’s particular contextual circumstances. Furthermore, the topics facilitate consideration of different aspects of the problem and serve as focal points for data gathering. Questions under each topic serve as prompts for inquiry relevant to the situation. Case exploration is iterative, moving back and forth among the topics as the story unfolds and new information is discovered. Here we use M.L.’s case to demonstrate how information gathering proceeds using the 4 topics as a guide.Medical indications focus on gaining clarity about the medical facts of the case, the diagnosis, prognosis, and treatment options. Clarifying medical indications provides a basis for further discussion with the patient and family and will be shaped by the case’s contextual factors, as well as M.L.’s preferences and quality of life. For M.L., the recurrence of his stage L2 neuroblastoma is a serious and potentially life-threatening condition, as we described previously. However, more information is needed about his situation, such as what are his risk factors, treatment options, and prognosis given the various options for treatment. For example, although neuroblastoma is not generally considered a chronic condition, high-risk neuroblastoma requires ongoing monitoring and treatment after initial remission and treatment for subsequent relapses.Providing clarity and transparency about possible options for now, and ways that treatment side effects can be managed—should treatment proceed—is critical. Clinicians should also make themselves aware of emerging treatments and their implications for patients such as M.L.In M.L.’s case, his primary tumor originated in the right adrenal gland, with local invasion into the posterior abdominal wall and regional lymph nodes. This locoregional involvement, combined with the presence of his tumor as stage to the 2021 neuroblastoma risk described patients with L2 neuroblastoma are for MYCN amplification are as M.L. not have to this The risk that a patient is more to recurrence, or than those as Although most patients with locoregional generally have those with MYCN amplification face significantly with MYCN to the and are and the of to an MYCN amplification in the medical team M.L. to be risk on the basis of his age, disease recurrence, and other factors. His prognosis is but current can provide partial or quality of life, and However, with his symptoms and diagnostic his disease is to be and the health care team M.L.’s treatment options, his prognosis and what is for life, as well as including In M.L.’s case, therapy would be Although prognosis could not be with the medical team was that with treatment, M.L. could have more good years and achieve further emerging treatments such as a that when combined with can highlight neuroblastoma and them with followed by stem cell transplant might be more available in the Thus, treating now might for to treatment options or the that decision-making to M.L. his about treatment, a focus on ongoing is However, the team to be about the possibility that treatment could and colleagues and what options, are these critical nurses play an important role in interdisciplinary with M.L. and his parents about the of remission and what it would to achieve In clinical this is often to as the medical of care and involves the benefits and of curative treatment other preferences, which we explore which options will be medical indications as a it is important to from both M.L. and his parents what their and preferences are and how they with their understanding of what is M.L.’s and his preferences to be at the is whether they are that or might be with further that M.L. is an adolescent, his parents have legal authority to to treatment, using a standard while also his in the pediatric bioethics literature include whether and under which the child’s should family and The is variously in the and ethics literature but means that should further the of the person in as these can be known to those who are not to make an informed decision or who are in other ways and make a informed The values of M.L.’s parents a to have their as as but they also not want him to As and colleagues we and of preferences when these with those of providers or in this case, with the conflict in about treatment M.L. and his parents, further exploration of what each preferences is factors can a patient’s understanding and including level of current pain, health level of the of the medical and among is important to that information and in such complex circumstances and often when complicating factors such as those have been the case of M.L., an of his current for be and include the effects of and on his and may his understanding of the medical as as these can be known and with informed decision-making. are when a person is not in severe and it should be considered that adolescent decision-making to be less the than it is for M.L.’s parents have an in him but the potential of treatment will be by M.L. In the setting of it will be important to for further exploration might include preferences with M.L. and his family to clarity about what each is followed by an interdisciplinary team meeting by with in clinical family or preferences and the or values them requires a level of to and an on for patient preferences the patient’s and understanding their values and As a M.L. legal authority to to his but like most he is in the of values and preferences and can the given his stage and ongoing he may the to the impact of treatment, a decision on his to side effects and the that may as on a and by more than age children who have chronic or serious age The of M.L. to treatment the importance of exploring his for refusal, his to the implications of such a and the to which his preferences are We explore whether M.L.’s from an is or is influenced by his for and of In by on patient preferences, the the team to whether M.L.’s is while that he is aware of of the it will be important to ensure that M.L. that he has some over what addressing M.L.’s for his Anya, to help him be and there should be a focus on his while for further M.L. an especially given his that the medical team his parents are to him. that is an and oncology nurse and has an with M.L. and his parents, she may be the team to explore both what M.L. and how his current state may be his decision-making. can information and to uncover which of M.L.’s preferences are a of his situation and which are more in this she can there are circumstances under which M.L.’s preferences might to a to treatment. may approach with M.L. by in a his and a of where this is M.L. should be of for those that he and that are not for to of should not be they be As an example, M.L. reveals that he has been having his new diagnosis, would have a legal and to this to on the might that are to her of M.L. include are the treatments that you understand to be available to and you understand to be the and including side effects, of these Additionally, can facilitate her relationship with M.L.’s parents by the that they and the health care team have for M.L., in of what is for him. can any M.L.’s parents and that her is to help the family the way treatment decision-making or M.L.’s for remission are that M.L.’s treatment is role would be to help both M.L. and his parents whether and under what M.L.’s for no more treatment will be role for nurses is to help patients and resources where available. 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M.L.’s case for an adolescent who does not have legal decision-making authority but does have a of it is important to him as as while the risks and benefits of various possible courses of action.