Learning that one’s child is seriously ill can be devastating, requiring families to decide when and how to share information about diagnosis and prognosis with their child. In most cases, this disclosure is made thoughtfully and collaboratively with the medical team. Some parents, however, may be concerned that disclosure will take away their child’s hope, cause emotional pain, or exceed the child’s capacity for understanding. Faced with competing obligations of truth-telling to their patient and respect for parental wishes, pediatricians may be unsure how to proceed. This clinical report examines ethical duties and legal considerations, providing practical and culturally sensitive case-based guidance for clinicians to approach parental requests for nondisclosure of diagnostic or prognostic information.
A 15-year-old has an inflammatory myofibroblastic tumor of the thoracic spine. Very limited treatment is available, and the oncology team anticipates that, over the next few weeks, the patient will go on to develop paraplegia. The parents think this will be a huge blow to their child and do not want to burden the child with that knowledge at this time. “Better to deal with it when, or if, it happens,” the parents say, instructing the team to avoid any discussions surrounding prognosis.
A 7-year-old has idiopathic pulmonary hypertension diagnosed 1 year ago. The patient is on maximal medical therapy and is not a transplant candidate. The child has done an amazing job adapting to the current circumstances, including the need for continuous subcutaneous treprostinil. But, of late, the child’s clinical condition has deteriorated, with more extreme exertional dyspnea. The parents recognize the inevitability of their child’s impending death and have consented to hospice enrollment. The parents request that the team not share the prognosis with their child, noting the child’s young age and lack of maturity to understand and cope with that news.
An 11-year-old presents with painful swelling of the right leg, diagnosed as stage 2 osteosarcoma. The oncology team recommends chemotherapy followed by limb-sparing surgery, which they believe is likely to lead to remission. The parents consent, while also making it clear to the team that they are focusing on “staying positive” and do not want their child to know the diagnosis is cancer, a disease of which the child’s grandfather recently died. To some members of the team, it “just feels wrong” not to be honest with the patient, particularly when the child will be undergoing treatment that is invasive and has substantial side effects. They wonder if they should go ahead and tell the patient about the diagnosis, despite the parents’ objection.
A 16-year-old has advanced hypertrophic cardiomyopathy and is not a transplant candidate. The patient is on maximal medical therapy with a prognosis on the order of months, although there is a possibility of a lethal arrhythmia at any time. The parents report that, in their culture, telling someone that they are likely to die is perceived as willing that outcome to occur. They ask the team to avoid any discussion of death or dying.
A 17-year-old has Duchenne muscular dystrophy and has mild neurocognitive disability. The patient uses a wheelchair and requires bilateral positive airway pressure at night. The patient’s respiratory status is worsening and the parents would like to pursue tracheostomy to allow for continuous positive pressure ventilation. They recognize that this will be a challenge for their adolescent to accept, especially given the additional limits on abilities and the teenager’s dislike of surgeries, and do not want the team to mention the option of declining invasive ventilation, which they consider “giving up.” The teenager has usually been able to play a role in decisions regarding health care.
To learn that one’s child is seriously ill can be devastating to families, who face weighty questions and obligations as they seek to make thoughtful and informed decisions. One especially difficult decision is when and how to share information about diagnosis and prognosis with their child.
Very young children lack the capacity to comprehend their medical condition and engage in decision-making. As children grow up, however, their abilities in these areas expand. They may seek greater understanding of their diagnosis and prognosis, and also wish to engage in shared decision-making on the basis of their evolving goals and values.
Some parents (the term “parents” is used broadly across this report to include persons in a parental role, including single, partnered, married, divorced, or coparents; biological, adoptive, foster, or step-parents; family members acting as parents; or guardians) wish to optimize their child’s understanding and welcome their participation. Others may feel that involving the child in these discussions could be harmful. Some worry that pessimistic prognostic information could undermine the child’s hope for the future. Others might fear the emotional burden to the child of having to come to terms with their mortality. Many believe that their child does not possess adequate maturity to recognize the need for certain interventions with burdensome side effects, thereby preferring to shield the child from decisions, as well as the information that would empower the child to participate in these.1
In situations in which parents request that a child not be informed of their diagnosis and/or prognosis, health care professionals are placed in a difficult situation of having to balance a commitment to the patient as an individual, including a duty to be truthful to the child, and a commitment to the parents as the legal decision-makers charged with child rearing. This clinical report does not undermine the authority of a parent to make decisions for their child; rather, it aims to address the complexities related to disclosing diagnoses and prognoses in the setting of serious illness and to offer strategies for promoting shared decision-making.
Historically, when paternalism was the guiding principle for medical practice, physicians routinely withheld information from patients, whether adult or pediatric, especially when the prognosis was poor. The initial American Medical Association (AMA) Code of Ethics stated that “a physician should not be forward to make gloomy prognostications because they savor of empiricism…For the physician should be the minister of hope and comfort to the sick.”2 As recently as the 1960s, more than 90% of US physicians expressed a preference for nondisclosure of a terminal cancer diagnosis, so as “to sustain and bolster the patient’s hope.”3
In the latter part of the 20th century, though, professional organizations and practitioners changed their views about disclosure. By the late 1970s, nearly all physicians surveyed had come to favor full disclosure to adult patients,4 and “honesty” officially became part of the AMA Code of Ethics in 1980. The basis for this shift was a more robust respect for the principle of patient autonomy and the evolving legal requirement for informed consent. To make informed decisions, patients need to understand their condition and relevant treatment options.
This rationale for the shift from nondisclosure to full disclosure did not apply to children and adolescents (herein referred to under the umbrella term “children” as understood to also subsume adolescents), who lacked the legal authority and often also the cognitive and maturational capacity to make their own medical decisions. Withholding information remained the norm in pediatrics. This practice was abundantly clear in Bluebond-Langner’s seminal 1970s anthropological study of children on a leukemia ward,5 none of whom had been informed that they had cancer. Interestingly, all the children nonetheless knew their diagnosis. This situation created a “mutual pretense,” in which both parents and children were aware of the situation but avoided talking about it with each other out of a desire to protect the other. Some commentators went so far as to mandate withholding information at the parents’ request, postulating that “physicians have a moral duty not to interfere with the child’s dependent relationship with the parents.”6 Parents were, therefore, granted significantly greater latitude than other surrogate decision-makers to determine the flow of information on the basis of their unique relationship to the patient, as well as the responsibility they bear to care for the patient, irrespective of the outcome of the treatment.
In the ensuing decades, however, increased emphasis came to be placed on involving children in their care and the decisions surrounding it. One reason was greater recognition of a child’s evolving decision-making capacity (DMC), which some felt to be equivalent in late adolescence to that of an adult: “The presumption on the part of physicians…should be that all adolescent patients between 14 and 17 have the capacity to make health care decisions, including end-of-life decisions, except when individual patients demonstrate that they do not have the necessary DMC.”7
Here, it should be noted that, logically, to provide informed consent, patients must be informed of their condition and the respective risks and benefits of various treatment options. The question of whether to be informed of one’s diagnosis or prognosis should not, however, be construed as a binary (ie, yes/no) decision. A child might prefer to receive that information not from physicians but rather from trusted family members, and some children opt to delegate whatever decision-making authority to which they do have a right, to their parents. Moreover, if one grants that a specific pediatric patient has the right, on their terms, to information about their diagnosis and prognosis, this ought to include the right not to know.8,9 (Indeed, a subset of adolescent patients express just such a wish.10 ) Both ethics and the law recognize the relevance of a patient’s waiver of their right to information, whereby “a medical doctor need not make disclosures of risks when the patient requests that he not be so informed.”11
A presumption that adolescents possess adult-level DMC, however, overlooks some characteristics of adolescents, taken as a broad group, which might impede their judgment. Adolescents, especially younger adolescents, might be especially swayed in this sphere of life by peer influence. Notions of invincibility might lead them to very different assessments of the risks and rewards of potential treatments as compared with adults who are more cognitively mature. Younger adolescents, in particular, tend to have a greater propensity for instant gratification and to be less future-oriented, with the limbic (emotional) areas of their brains maturing more rapidly than the prefrontal (deliberative) areas.12 This “dual-process” theory of maturation has led psychologists to distinguish between “cold cognitive abilities,” which are applied in calm situations with minimal peer influence and time to deliberate about the facts, and “hot cognitive abilities,” which are relevant to decisions made in a context of emotional arousal or conflict.13 Whereas the former usually are firmly in place until age 16, the latter are not. These nuances are why developmental assessment of the individual patient is important.14
Yet, even if a pediatric patient lacks sufficient DMC to provide informed consent, the patient’s assent should be solicited (and, depending on the patient’s maturity and the medical necessity of the procedure, might ethically be required to proceed with treatment). Such assent requires “a developmentally appropriate awareness of the nature of his or her condition” and “[telling] the patient what he or she can expect with tests and treatments.”15 Case 3 is an example. The parents have just consented to their child undergoing chemotherapy and then limb salvage surgery, treatment interventions that are likely to be accompanied by severe side effects, in the instance of the chemotherapy, or to be invasive, in the case of the surgery. Although at 11 years of age, the patient might not possess the maturity to make an independent decision, it seems reasonable for the child to understand that these treatments will be unfolding, so that the child does not feel as though they are being disregarded as a person to whom this is happening, as well as why these treatments are being implemented, so that they feel more as they are being done for them rather than to them.
Reasons for Nondisclosure
There are many reasons why parents may favor nondisclosure. They might, as in Case 1, fear that knowledge of diagnosis (inflammatory myofibroblastic tumor, in this case) and prognosis could damage a child’s hope or, at the very least, cause the child emotional distress.16,17 This concern is particularly common when the prognosis is poor and treatment options are limited or nonexistent. The parent may have concerns as to why the child should be burdened in advance of actual decline, particularly if there is some uncertainty as to when (or even if) this will occur.
Parents may also be concerned that disclosure of all management options, including the possibility of forgoing life-sustaining treatment, could lead a pediatric patient to decline specific interventions. This possibility is precisely the concern in Case 5, in which parents strongly favor tracheostomy in the context of advancing Duchenne muscular dystrophy and wish for this to be presented to their child as a requirement rather than an option for consideration.
Nondisclosure may also spare the parents emotional angst. Bereaved parents who believe their child was afraid or anxious at the end of life are more likely to report their own distress or poor quality of life years later.18 Communicating to one’s child that they are at risk for death also involves admitting that to oneself. This process may be especially challenging if the parents feel a sense of responsibility for the child’s illness, as in cases of a genetic or transmitted condition. Yet, even if that is not the case, a parent who believes that their most sacred responsibility is keeping their child safe from harm may harbor unwarranted guilt.
Parents may also be concerned about the impact of the knowledge of a child’s diagnosis or prognosis on the family unit, especially the child’s siblings, as well as wider social structures, including children in the patient’s class at school or the community at large. This concern can be especially true for diseases that carry some stigma or potential risk of transmission.
Finally, a request to withhold information may reflect the family’s interrelational dynamics, especially if their cultural values prioritize family decision-making over individual patient autonomy.19 Patient- and family-centered care is “grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.”20 Only by identifying the reason for the parents’ reluctance or unwillingness to permit disclosure will the medical team be able to respond appropriately and effectively.
Even if parents do want their child to understand their condition and its ramifications, they might not know how to convey that information in the setting of severe disease.21 Of all things that parents prepare themselves for, informing one’s child that they may die is generally not among them.
Physicians, too, may be reluctant to engage in direct disclosure, often having received little training in this area,22 and potentially also feeling that they have “failed” if the child does not survive.23 An additional possible disincentive is the increased use of patient satisfaction metrics: There is literature to suggest that more optimistic prognoses are associated with greater patient perception of physician compassion,24 with the converse applying to disclosure of a poor prognosis.25
The Challenges and Limitations of Nondisclosure
Many professional recommendations include involving pediatric patients in decision-making.26 Arguments in favor focus on the interests of the child and the parents, practical concerns, the obligations of health care professionals, and cultural considerations.
Interests of the Child
Following Bluebond-Langner’s work,5 other researchers have shown that even very young children with serious illness know much more about their illness than adults often believe. These findings call into question the assumption that, by not explicitly disclosing difficult truths, we are sparing children from having to think about those truths. Instead, the more likely reality is that, as children hear the conversations around them, they glean partial information. The stories that children weave together for themselves from the facts to which they have access may be more frightening than reality, whether in terms of what their illness is or of how they imagine that the future may play out for them. Thus, they are likely to have misunderstandings, questions, and anxieties. If there is a conspiracy of silence, children may not feel empowered to air their anxieties and ask their questions. Rather, they may feel compelled to behave outwardly ignorant to protect from pain and sadness the adults who are striving so hard to protect them. Isolation may be the end result.
Nondisclosure has important implications for trust within the doctor–patient relationship. If children sense that information is not being shared with them, they may lose trust in the adults involved in their care, be it family members or members of the medical team. This realization may impact their trust in the health care arena, including their openness and engagement in the setting of future utilization of health care services.
It is important to note that age is not necessarily predictive of what children know, with lived experiences often contributing to increased understanding.27 Younger children, although generally told less about their cancer diagnoses, nevertheless report similar levels of emotional distress as older children, potentially because they perceive the mental anguish of their parents.21 Children also often wish to know more than their parents assume: Less than half of parents in a recent study accurately predicted whether their child would want to know they were dying.28
Insofar as children are not receiving important information that pertains to their health, even in a developmentally appropriate fashion, they are being denied the opportunity to exercise their personal voice surrounding decisions that may be under consideration. This opportunity may be all the more important for children who will never reach adulthood, for whom childhood offers the only window for achieving any level of self-determination with regard to medical decisions and self-realization with regard to certain life goals. In Case 5, denying the patient comprehensive information about treatment options deprives the patient of the opportunity to be an active participant in their own health care in the present, which may be the only opportunity at self-determination, given the progressive nature of Duchenne muscular dystrophy.
What is more, withholding information may prevent persons from reflecting on what their hopes are in the setting of a serious diagnosis or poor prognosis. In the process, children, as well as their families, may miss out on the opportunity to renegotiate the intended direction of care when current conditions and future possibilities change. This process of “regoaling,” whereby goals are adjusted to a new reality, can be associated with reengagement, well-being, and satisfaction.29
Studies have shown that adolescents usually wish to participate in decision-making, with two-thirds of adolescent patients with cancer wanting to be actively involved,30 while still valuing a shared decision-making approach. Unfortunately, shared decision-making in pediatrics is usually focused on parents, targeting children alone just 7% of the time and targeting the pediatric patient with another party in an additional 19% of cases.31
To be involved in decision-making, knowledge of diagnosis and prognosis is essential.32 Teenagers recognize this: In one study, 75% of 15- to 17-year-olds stated that it is “extremely or very important to have a precise understanding of chances of cure, as a number,” and 80% said it is “extremely or very important to know about chances of cure.”33 These beliefs are especially true related to potential end-of-life situations, in which the vast majority of chronically ill 11- to 18-year-olds in another study found it acceptable to discuss the option of forgoing treatment and focusing on alleviating pain and symptoms.34
By contrast, not being involved in decisions can lead adolescents to feel that their views are not valued,35 thus increasing fears and anxiety. They are likely to feel unprepared for upcoming treatments and procedures.36 Studies suggest that a majority of teenagers with advanced cancer are able to understand the consequences of their decisions, including how these would impact surviving family members and friends. Most of them believe that participation in advance care planning would be helpful, as would accompanying conversations around values, goals, and health care decisions. In fact, such conversations might lift a weight by giving an outlet to discuss emotions around uncertainty, to define life priorities, and to regain some semblance of control.37
Making a medical decision is not the only reason why such information can be helpful. Without understanding what the future likely holds, a pediatric patient is not able to take preparatory steps (such as seeking out experiences that otherwise they would be deprived of or perhaps making arrangements around fertility preservation).35,38–40 Persons whose end of life, or fundamental change in quality of life, like in Case 1, is near may prioritize certain upcoming events if they know that the opportunity to experience them is limited because of impending disability or death.41 Studies have shown that pediatric patients who learned that they had cancer at the time of diagnosis were better adjusted than those who learned at a later stage.42
Case 1 (Resolution)
The oncology team acknowledges that it will be extremely difficult for the patient to face the possibility of paraplegia; at the same time, the team feels compelled to inquire about specific experiences and activities that are important to the child that may no longer be feasible in the event of paraplegia. The parents cite their child’s love of soccer and wish to see the Statue of Liberty, both of which will soon become difficult or impossible. Wanting to give the child every chance at those experiences while also respecting the parents’ concerns, the team suggests framing the discussion with the child in terms of their goals, acknowledging that mobility may become more challenging going forward. Recognizing the patient’s age as a mid-adolescent, the team allows the patient to take the lead in inquiring more about what this means. The child does not, but the knowledge of upcoming challenges prompts the child and family to “move up the timeline” on the trip to New York they had long planned.
Nondisclosure of medical information is not simple or easy. Every health care professional, or any person aware of the child’s medical condition, for that matter, who interacts with the child must be circumspect to avoid inadvertently revealing information that has not been shared. Frank conversations must be held apart from the child. Limited yet consistent explanations need to be given to justify why certain procedures, treatments, or hospitalizations are being pursued.
The delicate balance of explaining without naming comes with the very real possibility that at any given time, a parent, health care professional, or other person in the know could unintentionally divulge previously withheld information. Adolescent patients’ open access to their electronic records offers another possibility for gleaning undisclosed information. This disclosure likely will not occur under optimized circumstances that might otherwise be arranged if difficult information was intentionally being shared (ie, in a supportive environment with the desired people present and using carefully chosen language). If unintentional disclosure occurs, parents, and the medical team who were attempting to withhold the information, will have to manage the fallout, including knowledge of how the child learned the information and possibly compromised trust from a child who now realizes they are not always being told important information that concerns them directly.43
Interests of the Parents
Even if efforts to withhold information are navigated successfully, parents may be left regretting that they did not have the chance to talk openly with their child about illness. One seminal study found that parents who spoke with their child about the child’s impending death essentially never regretted doing so, whereas one-third of those who did not ultimately regretted their decision.44 To be clear, this was not a randomized controlled trial and, thus, should not be interpreted to mean that all parents should talk with their children about impending death. A more modest conclusion from this study would be that, for those who choose to do so, they are far less likely to regret their decision.
Obligations of Health Care Professionals
For many in the health care profession, honesty and truthfulness, as a foundation for trust in the relationship with patients, are defining moral attributes. The AMA’s foundational Principles of Medical Ethics, which define “the essentials of honorable behavior for the physician” and on which the organization’s entire Code of Medical Ethics is premised, recognizes the duty to “be honest in all professional interactions.”45 It goes without saying, then, that another group directly affected by matters of (non-)disclosure is the health care professionals who participate in the child’s care. Although some may be sympathetic or even aligned with a parental decision to withhold information from a child, others may feel as though they are engaging in deception, holding conversations in hushed tones, euphemistic terms, or away from the child altogether. Indeed, doing so may be labeled lying, which some would argue is a deliberate assault on people.46
The distress that health care professionals can experience from engaging in nondisclosure should not be underestimated. Honesty, after all, serves the purpose of developing trust and cooperation essential for a successful therapeutic relationship. This distress, in and of itself, may not justify requiring parents to disclose to their children, but it deserves to be recognized, named, and further explored. Various resources can be accessed in health care systems, both to support health care professionals struggling with moral distress, such as through dedicated staff care conferences, formal debriefings, and wellness programs, and to help determine whether circumstances should be challenged or at least negotiated to a more mutually acceptable path.47
At the very least, teams of health care professionals should offer each other a forum in which these negative emotions can be further explored. Both validation that others are also troubled and the opportunity to consider a different lens through which colleagues are approaching similar circumstances can be valuable sources of support in the face of an internal struggle. In situations in which the health care professional believes that honoring the parents’ request would irremediably violate their ethical beliefs, withdrawing from the case and transferring care to another professional may be considered, when possible. An intermediary resource to consider would be an ethics committee that might help provide direction in the form of recommendations for how to proceed. Some ethics committees might mediate the situation by convening interested parties and allowing them to hear each other’s perspectives, in an effort to identify areas of consensus and possible paths forward. In addition, some institutions may have existing policy around veracity and truth-telling to help guide health care professionals.
It bears mentioning that discussions and standards around truth-telling and disclosure look very different in mainstream 21st century America than they did during other periods in our nation’s history and across cultures today. The tendency among white Americans and Western Europeans to prioritize the individual over the group is actually the exception across cultures of the world rather than the rule.48 For example, although two-thirds of US pediatric oncologists report consistently disclosing information to their patients, less than 10% of pediatric oncologists in Japan say they do the same.49 Among certain Indigenous peoples of the Americas, the speaking of a diagnosis or of a poor prognosis risks reifying it. The norm in some such cultures, therefore, is not to disclose, even to adult patients.
In this respect, it is important to recognize that individual autonomy, which has been a sacrosanct principle of modern American bioethics, is actually only one representation of the overarching concept of “respect for persons.” For some persons, that respect is best expressed not in the individualistic sense, but within a communal cultural context of extended family, faith, and culture. At this broader level, nondisclosure could be consistent with respect for persons by considering the patient as a person situated within the values of their culture, in which direct disclosure may not be acceptable. We see this, for instance, in Case 4, or at least in the parents of this patient, who espouse cultural beliefs that truth telling in end-of-life situations (as advanced hypertrophic cardiomyopathy will soon be) can be more harmful than helpful in giving rise to negative ramifications.
It bears mentioning that all people come to human interactions with their own set of implicit and explicit biases. Rather than assume based on a person’s cultural background what their mores might be, it is important to acknowledge the plurality that makes up subcultures. For example, 52% of Mexican American people in one study did not believe that a patient should be told about their terminal prognosis,48 but assuming all Mexican American people feel similarly would disrespect nearly half of that group.
A good starting point, therefore, is to inquire about the family’s culture, community, and faith, especially as these factor into understanding of and responding to illness. It is helpful to ask what the patient’s and family’s preferences are around receiving information: How much of it do they want (big picture versus intricate details), how directly (as frank as possible versus filtered or tempered) do they want information, and whom do they wish to be present when they receive it. More direct questions about how the patient and family make medical decisions, with reference to previous decisions they have made (if any) and what worked well for them in those situations, may provide a guide for future discussions. Practical wording for these queries has been provided by Rosenberg et al.37
In the event that the language of the team is not concordant with the language of the patient and/or family, it will be important to work closely with language interpreters in the setting of sensitive conversations. Meeting with the interpreter before having the conversation with the family can be very helpful in elucidating cultural considerations that might otherwise be unknown to the team, as well as in establishing a common understanding.
In modern day health care in the United States, honesty and integrity play a sacred role. Although we must recognize and honor the diversity of cultures and opinions that make the richness of our society, it is nonetheless necessary to also have some guiding principles and standards that offer a scaffolding for how professionals should conduct themselves in their work. The default position should be one of openness and veracity in which the pediatric patient is a partner in the decision-making process, to the level of their ability, their interest, and their family’s comfort. In the United States, nondisclosure should be viewed as an exception, or at least a departure, from the norm around which there should be discussion and for which there should be a good justification, particularly for those patients who meet one or more of the factors favoring disclosure that are outlined below.
Patients who have the legal authority to make their own treatment decisions have the right to full information about their condition and the medical treatment options available to them.50 This includes adults, with the age of majority being 18 years in nearly every state, as well as emancipated minors. Requirements for emancipation vary by state and in some cases include pregnancy, parenthood, marriage, or active military service.51
Unemancipated minors have the authority, depending on individual state laws, to consent to treatment of particular conditions, often including sexually transmitted infections and treatment of substance use disorders. When an unemancipated adolescent is not suffering from one of these specific conditions, there is often-conflicting judicial guidance (on the state and federal level) regarding so-called “mature minors,” including who determines whether a minor is, indeed, mature, and their authority to consent to treatment.52
For minors who do not fall into those specific exceptions, it bears noting that there is no statute that would categorically support parental demand for nondisclosure. To raise a legal claim that might establish such a standard, parents would need to be able to identify damages that they experienced as a direct result of the disclosure.
By the same token, it also is not clear what the legal implications of acceding to a parental request for nondisclosure could be. Conceivably, on reaching the age of majority, a former pediatric patient could sue a physician for previously withholding information to which the patient believed they had a right and based on which the patient would have urged different decisions than what ensued. There may be circumstances under which the patient is able to demonstrate having been harmed by this violation of the physician’s fiduciary duty to them. Here, too, the absence of relevant statute or case law makes it impossible to determine the likelihood of success of such a suit.
Given the lack of legal precedent and conflicting pressures to withhold and to disclose, health care professionals should strive to find areas of common ground between the parties to build alignment. Ultimately, ethical duties ought to take precedence in determining how to handle the sharing of information.
Clearer situations emerge at the ends of the spectrum: In circumstances under which minors have been granted the right to make their own decisions (which vary from state to state) or in circumstances under which a child is unable, as a result of developmental status, to participate meaningfully in conversation surrounding diagnosis, prognosis, and medical decisions (for instance, a nonverbal toddler or a child with intellectual disability who is cognitively incapable of engaging around these topics). For children who fall somewhere between the two ends of this spectrum, whose medical decisions still fall to their parents, the child’s assent may be sought in advance of certain procedures or major decisions.
When a parent requests that a child not be informed of the diagnosis or prognosis, the child’s health care professionals may face difficult choices. It is crucial not to assume that the parent making such a request is a “bad parent.” Instead, such a request should be viewed as an opportunity for dialogue about the meaning of the information that parents want to withhold and about their specific fears. The triadic relationship in pediatrics, involving the clinician, parent(s), and child, introduces multiple layers of obligation.
There is no absolute obligation to be completely and immediately forthcoming with diagnostic or prognostic information. Nondisclosure can be tolerated for a period of time to build rapport in the relationship between parent and professional and to be able to negotiate a plan for how and when to disclose. In the meantime, it is important to identify what elements of communication may be more discretionary (such as complete disclosure of prognosis and diagnosis) versus unacceptable (such as lying to a child of any age).
It should be noted that, beyond the classic omission/commission distinction, there are a number of nuanced ways to address this dilemma. Some are to be avoided because, at best, they border on being misleading, such as “contingent answers” that focus on future possibilities without recognizing the likelihood of these happening. An example would be saying, “If you have no fever, then you can go home,” without identifying the required duration of being afebrile or the likelihood of that occurring. Other examples include narrow or partial answers that avoid the larger context, as well as “nonanswer responses,” which replace facts with reassurances. Each of these serves to prevent the pediatric patient from actively engaging in their own health care.53
At the same time, it is appropriate to look beyond the precise question posed by the pediatric patient to what they may really be asking. The pediatrician and parents would do well, therefore, to brainstorm about what response should be given if the patient were to ask directly, “Am I dying?” In such a case, it is important to note that preadolescent children generally do not possess a “mature conception of death”54 and, thus, may interpret disclosed information much differently than adults. This situation is, therefore, one of the rare instances in which it may be optimal to answer a question with another question, allowing one to gain greater insight as to the nature of the original query. Possible responses include “I wonder why you ask that now?” or “Let’s talk about it; what do you think the answer might be?”55
It is quite possible that, rather than asking about life expectancy, the child could be expressing concern about increasing symptom burden or simply expressing fear of the future or the unknown. If so, then disclosing prognosis would not only contravene the parents’ request, it would also not answer the question the patient was truly asking and could potentially add to the patient’s burden. But if the patient was truly inquiring about prognosis, it would be unprofessional for the clinician to outright lie. One appropriate response might be to honor the validity and importance of the question and offer to bring the parents into the discussion.
Conversations with family should be documented in the medical record to capture the communication plan. Such documentation may prove a valuable way to keep team members apprised. It also provides insight into health care professionals’ reasons for determining the extent of information to share with the patient.
Case 2 (Resolution)
Wanting to honor the parents’ request while also respecting the patient’s need for understanding, the team informs the parents that, although they will not volunteer prognostic information, if asked directly, they will not lie to the patient about the prognosis. To assuage the parents’ concerns, the team suggests possible responses to a direct inquiry about death or dying, such as “I wonder why you ask that now?”, and promises to bring the parents into the conversation if, indeed, the child wants to know whether they are dying. The parents are reassured that no one on the team will volunteer information about prognosis and that they themselves will be present for any disclosure conversation, which they acknowledge will have to happen if the child truly wants to know.
In seeking to foster collaboration with parents, it is reasonable to inquire what they believe the patient (whom they usually know best) might want.10 Depending on the child’s age and developmental status, it may also be reasonable to try to gauge directly how much the child would like to be part of both medical updates and decision-making conversations. The pediatrician should also share their own views on disclosure, framed in terms of professional obligation. Parents should be given the opportunity to process the information regarding disclosure that they have been given.56
Rather than asserting some moral obligation to immediately disclose, it is more effective to inquire as to parental reasons for making the request to withhold. This inquiry allows thoughtful exploration of parental concerns, which may in turn invite addressing, clarifying, dispelling, or contingency planning. Studies have shown, for example, that prognostic disclosure tends to have a positive effect on a patient’s hope, even when that prognosis is grim.57 Identifying the reasons for parents not wanting disclosure may pave the way toward compromise, such as in the form of staged disclosure based on the patient’s level of inquiry, as well as provide parents with helpful language that they themselves can use in discussing the medical situation with their child. Here the “ask-tell-ask” method can be especially helpful, as it provides a format for conveying discrete units of information contextually,58 establishing understanding, and assessing desire for additional information before continuing further.59
Case 3 (Resolution)
Rather than contravening the parents’ request, the oncology team seeks a better understanding for the reasons behind it. The parents explain that, after the death of the child’s grandfather, the child has come to associate the word “cancer” with dying. They do not believe their child will be able to hear that diagnosis without giving up hope for any possibility of survival. The team explains that honest disclosure can actually foster hope (and trust) among patients; the team also acknowledges a professional obligation toward the patient to help them understand that they have a serious illness for which treatment is needed, even as the team is optimistic about the patient’s future. The parents are amenable to a disclosure that will not use the particular word “cancer,” and also commit to ongoing discussions with the team about when it might be appropriate to share the precise medical diagnosis.
The expectation of candor applies even in the context of cultural differences, because if the parents are not obligated to abide by prevailing cultural standards of disclosure, neither should the pediatrician be required to adopt an alternative standard (which could be in direct conflict with professional obligations). Although health care professionals should show an openness and curiosity toward understanding the individual and cultural values and beliefs families bring with them, they should not be required to compromise widely accepted professional standards of behavior.10 By the same token, it should be acknowledged that we live in a dynamic society: There are times when professional obligations do need to shift. Modification of norms ought to occur in a concerted fashion, however, at the level of the profession rather than the individual.
In some cases, disagreement may exist between the parents themselves or with another entity making decisions on behalf of the child (such as a government agency or court-appointed guardian, in the case of children who are in state custody). In cases in which there could be at least the perception of divided loyalties, it may be valuable to enlist support from neutral parties that can help mitigate and mediate between differing perspectives, including patient/family advocates and/or hospital ethics committees.
Factors Impacting the Obligation to Disclose
In determining one’s obligation to disclose, the age and maturity of the child are important considerations. An adolescent nearing the age of majority (at which point disclosure would be the legal and ethical requirement), or one who displays reasoning skills and judgment or discernment on par with that of many adults, might be invited to specify how much they would like to know.
Level of engagement around medical care is another factor that ought to carry weight, whether this manifests as substantial curiosity and interest surrounding one’s health or a tendency to seek an active role in the decision-making process. By the same token, a patient’s lack of inquisitiveness is also relevant, because children (as noted above) also have the right “not to know.”
Finally, the severity and implication of diagnosis and prognosis might be compelling reasons for disclosure. Children who will undergo invasive or grueling treatment(s), who (unbeknownst to them) may be in the last stage of their life, or whose condition could have significant implications for the health of others, deserve to be given at least some general understanding of their illness and what is happening to them. Without information about their condition, they may be deprived of the opportunity to make arrangements to live on their own terms, with examples ranging from advance care planning to fertility preservation.
In situations in which the patient’s age/maturity, expressed level of interest, and/or significance of disease would weigh toward disclosure, engaging the parents more directly about their reservations to permit some level of information sharing is indicated. Especially when pediatric patients are actively requesting information, either explicitly or implicitly, “shuttle diplomacy” may be helpful. This approach involves individual conversations with the patient and with the parents, eliciting their interests and concerns, and then incorporating that information in subsequent conversations with the other party.60 This technique may gradually chip away at the “mutual pretense” that remains common in these situations, creating an avenue for more forthright sharing. The approach also may help identify some common ground on which to build to bring the two parties closer in their stances.
It may also be helpful to proactively address some of the parents’ concerns regarding how the potential disclosure might occur. Parents might reasonably be concerned that information would be delivered in a manner that does not honor the patient’s developmental abilities or personal needs or might exceed what the patient is seeking to know. Because disclosure exists on a spectrum, some patients prefer full disclosure, and others prefer to know only certain aspects of their condition or prognosis. In this regard, the concept of allowing the child to “have a say,” to the appropriate extent, which may well change over time, is relevant.61 Making clear, too, that there are experts available in communicating in a developmentally appropriate way (such as child life specialists) may provide some reassurance to anxious parents.
It may also be helpful to identify the practical implications, and limitations, of a plan to withhold disclosure. As noted above, an attempt to shield a child from information likely will lead to an unintentional or uncontrolled divulging of that information in a suboptimal setting, which could lead to greater pain for the patient and for the family.
In situations in which the parents remain steadfast in opposition to disclosure, the medical team must remember that its primary obligation is to the patient. For adolescents who are nearing the age of majority or display maturity of understanding, a request for disclosure should be honored, even in situations in which the patient may not have the legal authority to make treatment decisions. There is no duty to volunteer all relevant information; rather, a query as to how much the patient would like to know should guide the conversation.
Throughout this process, enlisting the aid of specialists, such as social workers to support the family and child life specialists to optimize communication with the child, is crucial. An adult with an established relationship to the child could be invaluable in helping the child process information; this might include a primary care physician, a counselor, a spiritual or faith leader, a community elder, or a teacher. Patient advocates may be invaluable to help the parents feel supported as they navigate such difficult terrain.
Case 4 (Resolution)
Not wanting to make assumptions, because not everyone of a certain culture adheres to the predominant beliefs of that culture, the medical team asks the patient’s family to help them better understand the family’s particular cultural beliefs. After listening carefully, the team also notes that their professional obligation is to at least invite the patient to express how much information the patient desires about what the future holds. They reassure the parents that this will allow their child to have a say in making clear how much or how little their child would like to know. Reassured by the team’s intention to let the child take the lead in the conversation, the parents agree to the plan as long as they also are present.
In the ensuing conversation, the child does not express a great deal of curiosity about what lies ahead, trusting the parents to tell them what they think they need to know. The team specifically assures the patient that if they ever wish to know more about the diagnosis or prognosis, they can ask questions and reopen this conversation.
In the Absence of Consensus
Sometimes, the steps delineated above do not yield consensus about the need for disclosure. In such cases, next steps will depend on the specifics of the situation. For a child with a severe illness who displays maturity and inquisitiveness, there is a strong argument to disclose at least some information, especially if the information is directly pertinent to important medical decisions that warrant involvement of the patient. Such disclosure, when done properly and thoughtfully, can end up being beneficial to both patients and families. Disclosure need not involve every detail of the patient’s condition or prognosis, but rather provide a basic level of understanding and then allow the patient to guide how much more information they would want.
Such disclosure should be tailored both to the patient’s expressed level of interest, as well as their capacity for understanding, and thus, adolescents with cognitive disabilities deserve special attention. The mere existence of cognitive disability should not disqualify adolescent patients from participation in discussions of diagnosis and prognosis. If a patient’s cognitive abilities are unclear, neuropsychometric testing may reveal areas of relative strength or weakness that can guide the approach to discussions of diagnosis and prognosis. If the child’s cognitive status waxes and wanes, timing key discussions to periods of greater lucidity is critical. Pediatricians should explore which communication styles the patient prefers and which approaches best meet the patient’s needs. Complementary and often helpful approaches include but are not limited to:
o Symbolic communication, including pictures and photographs
o Either/or questions, rather than closed (ie, yes/no) or entirely open-ended questions (which require patients to think and retain multiple possible answers)
o Pausing before rephrasing questions (because rephrasing can lead to emotional overload)62
Even such tailored disclosure may be contrary to the parents’ expressed wishes and deeply held values. Thus, all attempts should be made to show respect for the parents’ belief system and to honor their love for their child. This approach includes transparency as to what information needs to be shared with the child, as well as attention to the different ways in which this disclosure could be accomplished. Providing parents as much control and authority in this regard is important. Parents may prefer to tell their child privately, they may choose to share information in concert with the health care team, or they might fully defer that responsibility to the team. A disclosure plan should respect these preferences and should also allow for follow-up discussions with parents and patients to help them deal with any concerns or emotions that follow disclosure.
Recognizing that these circumstances will likely cause some moral distress for health care professionals, it should be noted that open conversations among team members to negotiate these sensitive situations can be instrumental. These may serve to validate widely held frustrations, identify new ways to think about a situation (from a different angle), and help generate creative solutions. In addition, these types of conversations can help foster a sense of community among team members. Hospital ethics committees are another important resource that can help provide guidance or recommendations regarding how to proceed in the event of an impasse.
Case 5 (Resolution)
The medical team empathizes with the parents’ desire to extend their child’s life, but the team also recognizes that the patient is a nearly 18-year-old who has been able to participate in decision-making about health care despite having neurocognitive disability. Moreover, the issue is not only about disclosure but also about treatment planning. Tracheostomy is an invasive procedure that adult patients in this situation might reasonably refuse. The team concludes that it would not be appropriate to conceal the option of forgoing tracheostomy.
In conversation with the parents, the team reframes the question from whether to tell the patient of this option to how to tell the patient, trying to give the parents as much latitude as possible in this regard and deferring to their intimate knowledge of their child. Out of respect for the parents’ concerns about their child’s ability to process medical information, and recognizing that “neurocognitive disability” describes a wide range of comprehension and processing abilities, additional neuropsychiatric testing is ordered to tailor the presentation of information in a way the patient is best able to understand. This testing identifies mild and specific cognitive impairment, yielding valuable insights as to how best to communicate with the patient.
The parents cannot bear to tell their child themselves but want to be present when the team talks to the child. This compromise ultimately allows the parents to witness the even-handed approach the team takes in assuring the patient that they will honor their decision regarding tracheostomy and stand by them no matter what.
The default position should be to include children in conversations surrounding diagnosis and prognosis in a developmentally appropriate fashion, to the extent that they, as patients, are comfortable. Rather than taking away any sense of hope, this approach helps patients delineate hopes that are appropriate to the circumstances.
Should the parents request nondisclosure, the initial response should be to engage them with openness and curiosity in seeking to understand the basis for this preference. Health care professionals should also have the opportunity to explain their position(s) to parents, drawing from professional standards of behavior and making clear that some obligations are nonnegotiable, such as refusing to outright lie.
In situations in which the family’s cultural beliefs weigh against direct disclosure, honoring such a request may reflect a communal understanding of “respect for persons,” in contrast to the more individualistic understanding common in Western medicine. At the same time, pediatricians must recognize that not every member of a cultural group adheres to beliefs common to that group, and thus, the patient should be invited to participate in discussions and decision-making to the degree that they wish.
In the absence of consensus, certain practical questions should be addressed, including:
Because information sharing and disclosure need not be all or nothing, what is the minimum information that each party believes would need to be shared?
Who should provide that information: Parents? Health care professionals? Both groups together? With or without the help of health care team members like child life specialists or social workers? With or without the assistance of other adults who may have an existing relationship with a child (eg, counselor, spiritual or faith leader, community elder, teacher)?
How should the team respond if the patient directly inquires as to their diagnosis or prognosis?
Ultimately, as the maturity of the child, the severity of the medical condition, the impact of that condition on subsequent life decisions and opportunities, and the patient’s level of inquisitiveness increase, so, too, does the duty to disclose information about diagnosis and prognosis.
There may be instances in which the medical team is ethically obligated to share diagnosis and prognosis with the patient, despite the parent’s request for nondisclosure. In such an instance, pediatricians should reframe the discussion from whether information should be shared with the patient to how it will be communicated. It is often helpful to enlist additional resources to navigate disagreement and support parties involved, such as hospital ethics committees, mediators, and patient advocates. Families should be consulted about meaningful sources of community support external to the hospital.
In situations in which medical staff are not able to share what they believe to be important information with a patient, moral distress may ensue. It is important to explore the causes of that distress in light of professional obligation, and provide an opportunity for staff to share their concerns in a safe and supportive environment.
Conversations with family should be documented in the medical record to capture the communication plan and the rationale for it.
Sara Taub, MD, FAAP
Robert Macauley, MD, MDiv, FAAP
Committee on Bioethics, 2019–2020
Robert Macauley, MD, MDiv, FAAP, Chairperson
Ratna Basak, MD, FAAP
Gina Marie Geis, MD, FAAP
Naomi Tricot Laventhal, MD, FAAP
Douglas J. Opel, MD, MPH, FAAP
Mindy B. Statter, MD, FAAP
Mary Lynn Dell, MD, DMin – American Academy of Child and Adolescent Psychiatry
Douglas S. Diekema, MD, MPH, FAAP – American Board of Pediatrics
David Shalowitz, MD – American College of Obstetricians and Gynecologists
Nanette Elster, JD, MPH – Legal Consultant
Florence Rivera, MPH
Anjie Emanuel, MPH
Drs Taub and Macauley participated in all phases of this manuscript development, including literature review, conceptualization and drafting of the report, and revisions; and both authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
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