Pediatric Shared Decision-Making and Maltreatment
Anna Meurer, MPH
Effective medical pediatric decision-making (PDM) relies on a therapeutic alliance between minor patient, guardian(s), and provider(s). Legal and social precedent support broad parental discretion in the absence of immediate and severe endangerment of the minor’s welfare. However, in many cases of maltreatment, suspected or substantiated, parents retain PDM rights. Additionally, most minor protection statutes and processes aim for familial (re)unification where possible. Together, they create a unique ethical conundrum. The possibility of a guardian who is both surrogate and cause of harm threatens the conventional decision-making model, and providers may struggle to navigate this uneasy alliance. This paper offers an analysis of the primary challenges to PDM in such circumstances and shows that many of the ethical questions arise as the decision-making process unfolds and information is gathered. In doing so, it makes the argument that too much of a focus on individual components like thresholds for harm or determination of intent may be counterproductive. Finally, it offers suggestions to guide healthcare professionals and institutions, emphasizing as the primary goal the preservation of the therapeutic alliance which assures the minor’s well-being through processes that support each of its members.
Pediatric medical decision-making (PDM) entails a therapeutic alliance of minor patient, guardian(s), and provider(s) operating within a complex moral, institutional, and societal context. Morally and legally, minors are regarded as a vulnerable population which obligates others to protect their interests and well-being. Scholarly discourse and legal precedent generally recognize parents as the most appropriate party to determine and protect such interests, supporting broad parental discretion in the absence of clear and convincing evidence of immediate and severe harm. Where such evidence exists, as with severe abuse or neglect, the state may exercise its power of parens patriae to intervene, even over parental objection.
However, while legal precedent regarding medical decision-making in cases of severe abuse is well established, there are many instances in which maltreatment is either not confirmed or does not clearly cross the threshold to justify state intervention. Even when maltreatment is reported and substantiated, parents often retain medical decision-making rights. This creates a unique ethical conundrum for providers. The possibility of a guardian who is both a decision maker and potential cause of injury for a minor patient fundamentally challenges the conventional decision-making model by undermining the idea of the parent as a benevolent protector of their minor’s interests. Moreover, minor protection statutes and processes often aim to maintain or restore familial unity where possible.
Most providers are well-informed of their legal and moral obligations to identify and report maltreatment, as well as the consequences of under- or over-reporting. However, they may view continuing a therapeutic relationship in the presence of maltreatment as a source of moral distress. Thus, providers are forced into the precarious position of navigating an uneasy alliance where they must balance the rights and authority of parents against their fiduciary duty to their minor patient and their own values without the mutuality of trust often considered essential to shared decision making.
This paper addresses the question of what standards and procedures should guide health care professionals in such cases. It first examines the primary challenges to PDM introduced by maltreatment, including uncertainty and bias in diagnosis and reporting; the collection, use, and disclosure of information; institutional barriers; and questions of parental fitness. It then makes the argument that many of the ethical questions arise as the information collecting and decision-making process unfolds and overly focusing on individual components like determining thresholds of harm, intent and/or culpability, or the influence of external factors may be counterproductive. In response to those challenges, it puts forward four suggestions. First, a holistic understanding of the best interests standard remains the most appropriate model for PDM. Second, providers’ core obligations do not change in the face of maltreatment and parents and minors retain a right to compassionate, comprehensive information even if decisional authority may be justifiably limited. Third, effective PDM occurs through family-centered care. Finally, implementing institutional pathways that assure time, space, and support for providers to discuss concerns and engage with families may better facilitate the early identification, intervention, and resolution of issues and reduce distress in providers. Ultimately, even in cases of suspected or known maltreatment, preserving the therapeutic alliance as a means to fulfilling the commitment to the minor patient’s well-being should be the primary operational and ethical goal.
Pediatric Decision-Making in Context
The UN Convention on the Rights of the Child affirms that minors hold several basic human rights that are enforceable through state action.  However, because minors generally lack decision-making capacity, they require a surrogate decision maker. Their parent(s) or guardian(s) are generally held to be the party best suited to determine and make such decisions.  Such beliefs are reflected in the United States’ legal system and societal norms, which afford parents wide latitude and discretion in making medical decisions regarding their minor children.  Not surprisingly, this conventional model of pediatric decision-making is challenged when there exists potential or confirmed maltreatment by those same parents.
Unfortunately, maltreatment is neither an uncommon nor insignificant threat to health and is one most pediatric health care professionals will encounter at some point. The US Children’s Bureau estimated 4.4 million referrals concerning 7.9 million minors received by CPS agencies for possible maltreatment in 2019, with 2.4 million screened-in for response. Of the reports, 16% were substantiated, comprising approximately 656,000 minors.  As with many public health issues, the actual number of affected minors may be significantly greater due to underreporting and/or lack of detection. As mandated reporters under the Federal Child Abuse Prevention and Treatment Act (CAPTA),  physicians who report suspected maltreatment in good faith are generally immune from legal repercussions, though those who fail to report may be held civilly or criminally liable.  However, both good and bad parenting can be difficult to define concretely, presenting a challenge for pediatric providers when it does not clearly cross a threshold for reporting or intervention.
Statutes concerning child maltreatment vary widely by state, but many laws and objectives of child protective organizations aim at a long-term goal of familial unity.  In fact, the Adoption and Safe Families Act of 1997 mandates reasonable efforts to reunify families except in cases with severe circumstances. This reflects prevailing cultural beliefs which ascribe value to family cohesiveness and the flourishing of the familial unit [8, 9] as well as the practical reality of the foster system. Not only is the system often unable to adequately serve the number of minors who need placement, but they often fare poorly in institutionalized settings.  Moreover, parents who are accused of maltreatment typically retain their legal custody and rights even when they do not have physical custody. They hold such rights until they are terminated through a formal, often lengthy, legal process.  The state may still intervene under the doctrine of parens patriae, but usually only does so in the case of clearly beneficial and effective treatments whose absence would cause significant harm to a minor.  Cases such as Hunt & Land v. Division of Family Services in 2015 demonstrate the courts’ reluctance to intervene and terminate parental rights before a formal legal process.  Thus, providers within the healthcare setting who suspect maltreatment fulfill their fiduciary duty to their minor patient with the cognizance that they are operating in a complex legal and societal context which is likely to encourage keeping the minor as part of the familial unit under the authority of their parents.
Ethical and Procedural Challenges
The ethical literature concerning pediatric medical decision-making is extensive, but it is less robust as it relates to cases where maltreatment is either not confirmed or not severe enough to justify state intervention. Virtually all medical institutions have guidelines and procedures for recognizing and reporting maltreatment in accordance with legal requirements. Yet, such guidelines may be insufficient to guide providers as they seek to maintain the therapeutic alliance and may fail to resolve feelings of moral uncertainty or distress. Early identification of maltreatment reduces morbidity and mortality,  making the role of the provider essential. Thus, the persistence of ethical and procedural barriers that impact their work must be addressed. As it relates to this analysis, perhaps the most significant ethical and procedural challenges surrounding maltreatment are uncertainty and bias in diagnosis and reporting; the collection, use, and disclosure of information; institutional barriers; and questions of parental fitness.
Uncertainty and Systemic Bias
Mandated reporting laws require providers to report cases if they have reasonable cause to believe that maltreatment has occurred, but do not require a preponderance of evidence.  While this standard is beneficial, it may lead providers to underreport suspected maltreatment because of uncertainty or to disproportionately report certain populations. The historical trend of systemic racism and its devastating effects on the child welfare system has been well-noted and studied by such scholars as Dorothy Roberts.  Particularly in younger children, attempts to classify injuries according to intentionality or culpability are often subject to bias. Providers are more likely to report injuries on children from lower socio-economic and minority families, families with whom they do not have a previous relationship, or families where the mother appears to be the cause of injury.  This is compounded by the fact that persons with limited access to health care are more likely to utilize emergency departments for primary care, resulting in a higher frequency of interactions with less continuity of care.  Certain features are often strong indicators of maltreatment, including pattern injuries, delay in seeking care, and lack of adequate explanations.  However, there are several other explanations for such signs, including lack of access, finances, or mistrust. Likewise, suspicions based on parental concern, or lack thereof, for the welfare of their child is susceptible to bias rooted in communication differences. News regarding a child’s illness is usually emotionally charged, and the information given to parents, including where and how, directly influences their ability to cope with a situation, make appropriate decisions, or engage with health care providers.  Because the quality of communication between providers and patients often varies according to similarity in cultural or other characteristics, metrics relying on perceived expressions of concern can be subjective and potentially unreliable. 
Providers are also placed under several institutional limitations that may negatively impact their judgement, one of the more common of which is time constraints. This can be particularly salient within the emergency setting, where physicians may not have previously seen a patient. The limited amount of time given to assess patients in the emergency department raises concerns of providers relying on cognitive shortcuts, which are highly vulnerable to bias.  Medical records may provide the context and documentation necessary to establish a pattern of concern, but providers may be reluctant to record suspicions because of the possibility their notes might be copied and pasted without verification or context.  This makes both instances of maltreatment and bias harder to identify. The concern is even more relevant in light of recent legislation like the 21st Century CURES Act which provides patients quicker and expanded access to their records, with a subsequent increase in scrutiny. In addition, a lack of available resources for providers, including colleagues with whom to consult, and/or previous negative experiences with reporting may also lead to delays or influence clinical judgement. 
Providers may also underreport cases because of uncertainty, the possible harmful effects on a family, lack of knowledge about reporting procedures, and fear or anxiety about going through court proceedings or the effect on their career.  Uncertainty is a core element in all medical decision-making, but providers may hesitate to report knowing they may cause irreparable damage to the therapeutic alliance by prematurely reporting a family who later turns out not to have committed intentional maltreatment. This is especially true if they have an established relationship with the minor and their family, including other children. Negative experiences with the healthcare system may lead to long-term effects on future trust and engagement.  All diagnostic tests and interventions have risks but reaching a level of certainty may require testing far beyond that needed to establish reasonable suspicion. Hoffman and Koocher’s discussion of medical child abuse acknowledges the concern that providers who pursue extensive testing may feel that parents initiate the maltreatment but that they become contributors in their efforts to confirm it.  Consequently, providers must weigh the desire for certainty against the costs and risks of tests. Reassurance of legal protections for providers who report in good faith or other technical information may not be enough to mitigate these fears, especially if providers do not have adequate support from colleagues or the institution.
Collection, Use, and Disclosure of Information
Maltreatment also presents unique ethical challenges related to the collection, use, disclosure, and protection of information. Early identification of child maltreatment victims or at-risk minors and subsequent enrollment in intervention programs benefits them by ensuring short-term safety and reducing long-term morbidity and distress. However, if the maltreatment is not overt or severe, diagnosing it may require a large amount of personal information be collected from the patient, guardians, and other relevant individuals.  If a provider believes there to be a reasonable suspicion of maltreatment, personal medical information is then reported to CPS and may become part of court proceedings. If the evidence substantiates maltreatment and leads to intervention, it generally outweighs the detrimental effects of using and disclosing personal medical information. However, in cases where allegations are not substantiated, or where concern is identified but children remain in the custody of their parents, the question must be asked whether the minor’s privacy has been violated without proportional benefit. This may be less of a concern to younger children than to adolescents who may object to the release of information but cannot prevent it.
There is also a question as to what extent parents and minors should be included in making medical decisions if maltreatment is suspected. Younger children are more likely to be reported as victims of maltreatment  and have very little, if any, ability to participate in decision-making or investigations. However, older minors not only may be able to provide information to providers that assists in determining if maltreatment has occurred but may also have preferences regarding treatments and interventions. In fact, the minor or their parents might object to or specifically request diagnostic tests designed to confirm maltreatment. Finally, some tests may require deception or separation.  Providers may be tempted to conceal the true purpose of testing or the results in order to obtain accurate information, preserve the ability of later conversations to corroborate findings, or avoid confrontation before reaching a specific level of certainty. In doing so, parents are knowingly and deliberately denied the ability to make free, fully informed decisions without certainty or due process.
The final challenge is that of parental fitness. Both legal precedent and moral discourse confirm that parental rights are never absolute and are always interpreted in light of their custodial responsibilities and the rights of their minor charges.  Parents are not required to be objective or altruistic decision makers, but they are generally assumed to be able to balance their interests and their children’s. In cases of suspected maltreatment, the parents’ fitness to act as surrogates becomes controversial. Not only is the fundamental idea of the parent as a benevolent protector of interests and advocate undermined, but accusations of maltreatment challenge shared decision-making. In more egregious circumstances, parental decisions are made in the shadow of the knowledge that charges against them may be dependent on the medical outcome of their child.  However, even in cases which do not rise to that level, the potential of legal action may inflame conversations between parents and the care team and also introduce a concern of parents inappropriately weighting their interests at the expense of the minor. More commonly, parents may be resistant to provider recommendations or unable to make substantial changes due to environmental or other constraints.
An assessment of parental unfitness often requires evidence of significant risk to the child, a causal link between the parent and the concerning conditions, and an insusceptibility to intervention. However, Azar et al. note the difficulty in identifying minimal boundaries for competent parenting and the need to assess the ability of individual parents/guardians to care for a particular child in the specific contexts available to them.  Maltreatment is not the only circumstance in which parental judgment may be impaired or unfavorable outcomes prevented. Nor is it the only circumstance in which parents may ultimately fail to act in their minor’s best interests, regardless of intention. Many factors, including cultural differences, mistrust of the health system, low health literacy, or finances may prevent parents from acting entirely autonomously or altruistically. Likewise, parents with good intentions but unreasonable hopes who insist on treatment without benefit can cause harm for their children.  Though the outcome may be the same, the motivation is clearly different between a parent lacking agency or mistakenly pursuing what they see to be in their child’s best interests and falling markedly short, and a parent neglecting or disregarding their minor child’s welfare for other motives. Providers must address both, but the effect on trust in the therapeutic alliance in the latter case may impact providers’ willingness to respect parental perspectives or values. This can prove challenging because Additionally, even if maltreatment has been accurately noted and reported, and providers are involved with other surrogates in addition to or instead of the parents, the length of most legal processes may be at odds with the need for expeditious decision making.  Such arrangements may cause moral distress in providers who feel they are required to comply with the decisions of parents who do not have their child’s best interests in mind in the interim.
A Four-Point Response
Though one may argue the suspicion or confirmation of maltreatment below the threshold of critical injury does not substantially change obligations regarding care, it nevertheless disrupts the standard order of operations. However, too much of a focus on individual components like thresholds for harm or determination of intent may be counterproductive. Providers do not necessarily need increased standardization or more education on identifying maltreatment, but instead need guidance and support as they seek to navigate the therapeutic alliance in light of the ethical questions which arise in its presence. Four suggestions may be useful: 1) a holistic understanding of the Best Interests standard, 2) recognition of the patient and family’s right to compassionate, comprehensive information, 3) family-centered care, and 4) institutional pathways that ensure time, space, and support for providers to discuss concerns and engage with families. Ultimately, such an approach pursues as the primary operational and ethical goal the preservation of the therapeutic alliance as a means to ensuring the minor’s well-being.
A Holistic Understanding of Best Interests
Under normal circumstances, the Best Interests standard serves as the accepted model for pediatric medical decision-making, but it is not without its critics. Discerning what constitutes a minor’s best interests requires an underlying value-based conception of well-being as a framework. The overarching question then becomes whose view is authoritative,  made more complex by the fact that ‘best interests’ is multifactorial and goes beyond mere medical well-being. Diekema’s harm principle  is useful in determining concrete thresholds for intervention but may be less useful in cases with less immediate or less severe threats to a minor’s well-being. When the interests of individual family members conflict, parents are usually responsible for deciding what promotes the flourishing of the family as a whole even if doing so is not necessarily beneficial to each individual member. Thus, parents sometimes deliberately and justifiably do not act in their child(ren)’s best interests in every situation.
A narrow definition of “best interests” may present a theoretically appealing but pragmatically challenging standard. However, viewed more broadly, the best interests standard provides a foundation for active and collaborative efforts to improve minor well-being wherever it falls on the spectrum. However, such a standard only works if understood in a holistic sense. All individuals experience well-being and identity in the context of their relationships, roles, and situations.  Minors are generally highly dependent on the support network provided by their family. To assess best interests in an isolated sense of one decision, one minor, or a solely medical context misses the underlying purpose of the standard and is not consistent with decision-making models for adult populations.  It is important to reiterate that the rights outlined by the UNCRC are distinct from familial interests and minors may choose to express those right and adhere to different values as they mature. A base level of health enables individuals to pursue well-being in meaningful and value-congruent ways. As such, Diekema is correct in advocating for ensuring that minors are guaranteed a minimum level of existence that would facilitate their developing well-being and expression of those rights. As a result, parents and providers have an obligation to preserve the minor’s ability to pursue such a future.  Thus, the most appropriate decision-making model includes a holistic conception of best interests that understands the minor as both part of, and independent from, their current position in the therapeutic alliance.
Compassionate, Comprehensive Information
Discussions to determine a minor’s best interests must be based on accurate, comprehensive information that facilitates fully informed decision-making. However, health care professionals may be tempted to withhold information or run tests without informing parents of their true purpose in order to confirm maltreatment. Such deception, even if well-intentioned, undermines parental authority and the patient’s developing autonomy. Parents are also required to bear the financial burden of such tests, even if they ultimately fail to substantiate allegations of maltreatment. In addition, withholding information and deception are generally difficult to maintain successfully in an acute environment given the number of health care professionals that interact with a patient and their family.
In the case of potential maltreatment which has not reached the threshold of justified state intervention and in the absence of a court order, provider obligations of adequate disclosure and consent do not change, regardless of perceived parental fitness or culpability. Parents are entitled to comprehensive and compassionate disclosure regarding what tests are occurring and their purpose, especially if not medically indicated beyond confirming the potential of maltreatment.  The provider’s obligation to responsibly report information remains, regardless of the cause of injury. The health care team should inform the parents of their concerns for the minor’s welfare and their desire to run additional tests. They should also inform parents that they are required by law to report suspicions of maltreatment and tell them on what basis they are making a report if they choose to do so.  Parents should be given the opportunity to have results and interpretations explained to them, provide explanations or clarification, ask questions, and raise concerns. Parents should also have access to any reports filed and should have recourse for filing an appeal or requesting further review by an ethics committee or independent examiner.
Transparency is equally important for the minor patient. Not only does this recognize the rights of the minor, but it also lays the foundation for a long-term therapeutic relationship beyond childhood.  Minors should be given an accurate, age-appropriate diagnosis and assessment of their health. Younger children may not benefit from explanations to the extent of older minors but may feel less distress and be more likely to cooperate if included where possible. In older children and adolescents, the potential unfitness of their parents as decision makers may support an argument for more weight given to their preferences. Minors should be informed of procedures and their purpose according to their level of comprehension and desire to know. If the team believes an assessment’s accuracy would be undermined by full disclosure, they would be justified in not telling the minor everything, but they should still explain the general purpose of the exam and any risks/benefits. In addition, accommodations should be made for minors who express concerns or refuse testing,  including temporary stays or reasonable alternatives, even if the result may be less valuable than the originally proposed test.
Providers should aim to preserve the therapeutic alliance through family-centered care. Though the provider’s fiduciary duty is to the minor and the minor’s health is most at risk, many minors benefit from remaining part of a family. Moreover, most current child maltreatment response models support family maintenance and reunification, and providers are only a few of the entities who may interact with the minor overall. As with many health interventions, the beneficial impact is arguably increased when individual elements work in a manner that is consistent and compatible with other existing infrastructures and procedures.
The family-centered approach is widely recommended by governmental and professional entities. The American Academy on Pediatrics recommends an approach which provides “complete and compassionate care for the family.”  Family-centered care also aligns with the provisions of the Adoption and Safe Families Act, which mandates reasonable efforts to preserve the family.  However, providers may not be extensively involved with family members beyond the initial assessment, treatment, and report. Even those who are will not work independently but will often do so in collaboration with other institutional (e.g. social work or legal counsel) and external entities (e.g. attorneys or guardians ad litem). This barrier is not unique to cases of suspected maltreatment, or even pediatrics. Regardless, there are several means by which providers can promote family-centered care and fulfill their fiduciary duty. In addition to providing comprehensive information, providers should avoid unilateral decisions, support parents as the legal decision makers by providing education and access to resources, and strive to elicit and accommodate genuinely held beliefs. Providers should also strongly consider delegating tasks related to maltreatment to specialists, not only because of their expertise but also so that families associate the maltreatment issues with them, allowing for the continuation of the core therapeutic alliance with minimal disruption.  Such specialists in the institution may also be able to help facilitate and/or navigate initial conversations with parents about requirements related to reporting to CPS and the likelihood of their situation resulting in that outcome.
Of course, these strategies must always be subordinate to the commitment to the minor’s well-being. The maintenance of a therapeutic alliance for the well-being of the minor loses its fundamental purpose if the minor’s interests are sacrificed for the sake of the relationship.  Providers must guard against adhering too strongly to a belief that the family is the only unit through which well-being can be realized. In cases of serious injury or continuing endangerment, family values must yield to the best medical interests of the minor. 
Providers and institutions are required to comply with legal reporting requirements, but this does not mean that they should not commit themselves to ensuring that those who enter the child protection system are more likely to be benefitted than harmed, nor fail to address situations which are concerning but do not meet the reporting threshold. Reporting is obviously appropriate for cases of clear maltreatment. However, there is a wide continuum of quality in parental care and decision-making, and providers do not have the discretion to only care for patients with “good” parents. Providers may be unsure of how to best support the family when they do not fully trust the parents or are unfamiliar with the CPS system. As a result, they may experience moral distress because they feel they have no choice but to continue a therapeutic relationship not in the minor’s best interests. Subsequently, they may also feel a sense of responsibility or guilt if the minor experiences a poor outcome later.
The best answer is not necessarily increasing the number of families reported to CPS. An increase in referrals may overload the system and result in delays for minors for whom a lack of intervention may result in significant harm. Moreover, it is not clear that additional involvement by CPS would result in better care for the minors, especially when balanced against the potential for systemic bias or the difficulty many families face after being reported. Seeking greater standardization in setting thresholds is also not likely to be the answer, as the relevant elements and their appropriate weights are often situational. Instead, a better solution is to implement or expand institutional pathways that provide time, space, and support for providers to discuss concerns, as well as resources to help them as they engage with families. Such pathways may better facilitate effective early intervention, better maintain therapeutic alliances, better protect families against overreporting due to bias, and reduce distress in providers, all of which would ultimately benefit minor patients.
Effective institutional pathways ensure that all stakeholders are supported and that there are opportunities for reflection and expert review. Pathways are unique to each institution, but usually incorporate several key elements, including leadership engagement, policy development, expert response teams, feedback and accountability opportunities, and quality improvement processes. Of equal importance is provider knowledge of and easy access to resources, including time, content expertise, and a designated space/process for consultation, discussion, and support. An excellent example is institutions that employ child advocacy specialists who can guide providers and parents through the combined medico-legal landscape and offer expert guidance. A robust and well-integrated ethics service can also provide key institutional support by ensuring that the appropriate stakeholders are involved in processes, that the best information is used, by offering expertise on the moral supportability of options, and by facilitating discussions. The involvement of the ethics service may be particularly useful in the case of provider-parent tensions. Ethicists may also assist in supporting families and reducing perceived barriers, including lack of perceived options, poor quality information, parent and child emotional states, and power imbalances. High quality information, trust and respect, and appropriate resources and access all facilitate effective PDM.  A comprehensive pathway, supported by institutional infrastructure and leadership, that provides both tools and support may reduce provider distress. Ultimately, supporting all parties in the therapeutic alliance helps achieve the operational goal of promoting the minor’s well-being.
Maltreatment threatens the conventional decision-making model for minors because it makes uncertain if parents can fulfill their traditional role as surrogates acting in their minor child’s best interests. While there are moral and legal precedents in cases of egregious abuse, there is a vast realm between good parenting, inadequate parenting, maltreatment, and severe abuse. This paper established the primary challenges introduced by the possibility of maltreatment, as well as the standards and procedures that should guide health care professionals who find themselves in such circumstances. A holistic understanding of the best interests standard, the provision of compassionate, comprehensive information, and family-centered care all support effective pediatric decision-making. Additionally, the implementation of institutional pathways that guarantee time, space, and support for providers to discuss concerns and engage with families may better facilitate the early identification, intervention, and resolution of concerns without increasing the burden on the reporting system. They may also reduce moral distress in providers. Ultimately, preserving the therapeutic alliance should be the primary operational and ethical goal even in cases of suspected or known maltreatment insofar as it is used to fulfill the commitment to the minor patient’s well-being and protection of their potential for expression of their core rights.
My sincerest thanks to the reviewer and my colleagues, Drs. John Szymusiak, Dana Howard, Abe Graber, and Joris Gielen for their insightful and constructive feedback, and to Stowe Locke Teti for his invaluable guidance to me as a new author.
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
The authors have disclosed no conflicts of interest.
Anna Meurer, MPH
PhD Student, Healthcare Ethics
Center for Global Health Ethics
- Cherry MJ. Parental authority and pediatric bioethical decision making. J Med Philos. 2010;35(5):553-572. https://doi.org/10.1093/jmp/jhq043
- Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth. 2004;25(4):243-264. https://doi.org/10.1007/s11017-004-3146-6
- Leavitt WT, Armitage DT. The forensic role of the child psychiatrist in child abuse and neglect cases. Child Adolesc Psychiatr Clin N Am. 2002;11(4):767-779. https://doi.org/10.1016/s1056-4993(02)00029-9
- Child Welfare Information Gateway. (2021). Child Maltreatment 2019: Summary of Key Findings. U.S. Department of Health and Human Services, Administration for Children and Families, Children’s Bureau. https://www.childwelfare.gov/pubs/factsheets/canstats/
- Federal Child Abuse Prevention and Treatment Act, 42 U.S.C. § 5106a(b)(2)(B)(i). https://uscode.house.gov/view.xhtml?req=(title:42%20section:5106a%20edition:prelim)
- Black L. Liability for failure to report child abuse. Virtual Mentor. 2007;9(12):819-822. https://journalofethics.ama-assn.org/article/liability-failure-report-child-abuse/2007-12
- Carroll RS, Hirst E, Hudson M, Shaw M, Deutsch SA. End-of-life medical decision-making for children in custody: A collaborative, multi-stakeholder practical approach. Child Abuse Negl. 2020;103:104441. https://doi.org/10.1016/j.chiabu.2020.104441
- Hui E. Parental refusal of life-saving treatments for adolescents: Chinese familism in medical decision-making re-visited. Bioethics. 2008;22(5):286-295. https://doi.org/10.1111/j.1467-8519.2008.00607.x
- Harris J. Child abuse and neglect: ethical issues. J Med Ethics. 1985;11(3):138-141. https://doi.org/10.1136/jme.11.3.138
- Gladsjo JA, Breding J, Sine D, et al. Termination of life support after severe child abuse: the role of a guardian ad litem. Pediatrics. 2004;113(2):e141-e145. https://doi.org/10.1542/peds.113.2.e141
- Hunt v. Division of Family Services, 146 A.3d 1051 (2015). https://cite.case.law/a3d/146/1051/6772390/
- Bailhache M, Leroy V, Pillet P, Salmi LR. Is early detection of abused children possible?: a systematic review of the diagnostic accuracy of the identification of abused children. BMC Pediatr. 2013;13:202. Published 2013 Dec 5. https://doi.org/10.1186/1471-2431-13-202
- Child Welfare Information Gateway. Mandatory reporters of child abuse and neglect. Washington, DC: U.S. Department of Health and Human Services, Children’s Bureau; 2019. https://www.childwelfare.gov/topics/systemwide/laws-policies/statutes/manda/
- Roberts D. Shattered Bonds: The Color Of Child Welfare. New York: Basic Books/Civitas; 2001.
- Keenan HT, Campbell KS, Page K, Cook LJ, Bardsley T, Olson LM. Perceived social risk in medical decision-making for physical child abuse: a mixed-methods study. BMC Pediatr. 2017;17(1):214. https://doi.org/10.1186/s12887-017-0969-7
- Shanley JR, Shropshire D, Bonner BL. To Report or Not Report: A Physician’s Dilemma. Virtual Mentor. 2009;11(2):141-145. Published 2009 Feb 1. https://doi.org/10.1001/virtualmentor.2009.11.2.cprl1-0902
- Delany C, Richards A, Stewart H, Kosta L. Five challenges to ethical communication for interprofessional paediatric practice: A social work perspective. J Interprof Care. 2017;31(4):505-511. https://doi.org/10.1080/13561820.2017.1296419
- Derrington SF, Paquette E, Johnson KA. Cross-cultural Interactions and Shared Decision-making. Pediatrics. 2018;142(Suppl 3):S187-S192. https://doi.org/10.1542/peds.2018-0516J
- Puumala SE, Burgess KM, Kharbanda AB, et al. The Role of Bias by Emergency Department Providers in Care for American Indian Children. Med Care. 2016;54(6):562-569. https://doi.org/10.1097/MLR.0000000000000533
- Hoffman JS, Koocher GP. Medical Child Abuse Hidden in Pediatric Settings: Detection and Intervention. J Clin Psychol Med Settings. 2020;27(4):753-765. https://doi.org/10.1007/s10880-019-09666-8
- Sathiadas MG, Viswalingam A, Vijayaratnam K. Child abuse and neglect in the Jaffna district of Sri Lanka – a study on knowledge attitude practices and behavior of health care professionals. BMC Pediatr. 2018;18(1):152. Published 2018 May 5. https://doi.org/10.1186/s12887-018-1138-3
- Smith CP. First, do no harm: institutional betrayal and trust in health care organizations. J Multidiscip Healthc. 2017;10:133-144. https://doi.org/10.2147/JMDH.S125885
- Kodner C, Wetherton A. Diagnosis and management of physical abuse in children. Am Fam Physician. 2013; 88(10): 669-675. https://pubmed.ncbi.nlm.nih.gov/24364482/
- Arias JJ, Weise KL. Pediatric end-of-life decisions when abuse is suspected. Virtual Mentor. 2012; 14(10): 767-770. Published 2012 Oct 1. https://journalofethics.ama-assn.org/article/pediatric-end-life-decisions-when-abuse-suspected/2012-10
- Azar ST, Lauretti AF, Loding BV. The Evaluation of Parental Fitness in Termination of Parental Rights Cases: A Functional-Contextual Perspective. Clinical Child & Family Psychology Review. 1998;1(2):77-100. https://doi.org/10.1023/a:1021883611965
- Baergen R. How hopeful is too hopeful? Responding to unreasonably optimistic parents. Pediatr Nurs. 2006;32(5):482-486.
- Carroll RS, Hirst E, Hudson M, Shaw M, Deutsch SA. End-of-life medical decision-making for children in custody: A collaborative, multi-stakeholder practical approach. Child Abuse Negl. 2020;103:104441. https://doi.org/10.1016/j.chiabu.2020.104441
- Feudtner C, Schall T, Hill D. Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making. Pediatrics. 2018;142(Suppl 3):S133-S141. https://doi.org/10.1542/peds.2018-0516C
- Iltis AS. Toward a coherent account of pediatric decision making. J Med Philos. 2010;35(5):526-552. https://doi.org/10.1093/jmp/jhq039.
- Lo B. Resolving Ethical Dilemmas: A Guide for Clinicians, 5th ed. New York, NY: Lippincott Williams & Wilkins; 2013.
- American Academy of Pediatrics Committee on Child Abuse and Neglect and Committee on Bioethics. Foregoing Life-Sustaining Medical Treatment in Abused Children.” Pediatrics 106, no. 5 (2000): 1151-3.
- Child Welfare Information Gateway. (2020). Reasonable efforts to preserve or reunify families and achieve permanency for children. Washington, DC: U.S. Department of Health and Human Services, Administration for Children and Families, Children’s Bureau. https://www.childwelfare.gov/pubpdfs/reunify.pdf
- St Claire K. What to do when it might be child abuse. Virtual Mentor. 2009;11(2):111-116. Published 2009 Feb 1. https://journalofethics.ama-assn.org/article/what-do-when-it-might-be-child-abuse/2009-02
- Appel JM. Mixed motives, mixed outcomes when accused parents won’t agree to withdraw care. J Med Ethics. 2009;35(10):635-637. https://doi.org/10.1136/jme.2009.030510
- Boland L, Graham ID, Légaré F, et al. Barriers and facilitators of pediatric shared decision-making: a systematic review. Implement Sci. 2019;14(1):7. Published 2019 Jan 18. https://doi.org/10.1186/s13012-018-0851-5