Skip to Content
A home for paediatricians. A voice for children and youth.

Position statement

CPS

Medical neglect: Working with children, youth, and families

Posted: Sep 23, 2022

The Canadian Paediatric Society gives permission to print single copies of this document from our website. For permission to reprint or reproduce multiple copies, please see our copyright policy.

Principal author(s)

Michelle GK Ward, Burke Baird; Canadian Paediatric Society, Child and Youth Maltreatment Section

Paediatr Child Health 2022 27(6):372–376.

Abstract

All children have a basic right to health care. When a child’s health care needs are not met, for any reason, health care providers (HCPs) must consider the barriers involved and the processes required to resolve the situation. Social, economic, or other barriers can prevent parents from accessing care for their child. Sometimes differing opinions, priorities, or values, between a child’s HCPs and parents come to impede the child receiving needed medical care. In some cases, caregiver failure to ensure needed care may be considered medical neglect. Specific skills and knowledge can help HCPs to prevent such situations from arising, and to work effectively with the family if they do. This statement offers an approach that HCPs can use to promote the best interests, well-being, and safety of children or youth at risk for medical neglect. 

Keywords: Child abuse; Children; Medical neglect; Neglect; Youth

A 3 1/2 year-old with significant speech delay has not had audiology testing and is not receiving speech therapy because parents feel their child is like other family members who were “late talkers”.

*

While discharging their 6-year-old with asthma from hospital for the second time in 3 months, parents decline the doctor’s recommendation for ongoing therapy with an inhaled steroid in favour of herbal supplements.

*

An 11-year-old with an undiagnosed bone lesion refuses a biopsy based on belief that faith will cure the condition (if it is even necessary). The parents support this decision.

*

A 15-year-old with depression and anxiety is no longer attending school. Parents blame their child for making poor choices, and say that ‘living with the consequences’ will teach the best lesson. The youth and the parents both decline to have a mental health assessment.

Parents, other family caregivers, and guardians (all referred to as ‘parents’ in this document) make health care decisions for their child or youth (all referred to as ‘children’ in this document) that they believe are in children’s best interests. Sometimes these choices are at odds with what health care providers (HCPs) recommend. Parents may also be unavailable, unable, or unwilling to make health care decisions on their child’s behalf. Each of these circumstances raises the possibility of medical neglect.

These situations can be complex and difficult for all concerned. They require time, open-mindedness, empathy, and strong communication skills to navigate. A solid grasp of relevant ethical and legal principles is needed, including an understanding of medical consent, capacity, and child welfare considerations. A framework to help HCPs work through these issues using an organized approach to medical neglect issues is offered here. It provides a practical, step-wise approach to the assessment and management of possible medical neglect while addressing the following questions:

  1. How can HCPs best work with children and parents when there is disagreement about or failure to follow through with the health care plan?
  2. When does non-adherence to the health care plan become medical neglect?
  3. What steps should an HCP take when there is suspected medical neglect?

What is medical neglect?

From the child’s perspective, medical neglect can be viewed as not having their health needs met, regardless of the reason(s) [1][2]. Taking this approach prioritizes the child’s needs and considers a range of contributing factors beyond parental responsibility. However, considering the parent’s role and responsibilities is also required when determining how best to address their child’s unmet health care needs. 

Differences of opinion regarding a child’s health needs are often at the root of disagreements between families and HCPs. Disagreement can occur when parents view their child’s needs broadly (e.g., spiritually as well as clinically), or when medical needs are outweighed by other valid considerations (such as culture, religion, education, or a family’s socio-emotional needs). In these situations, all parties should consider the child’s optimal health and well-being as the most important common goal, and work together on a care plan that reflects both the best medical evidence and the family’s values and preferences [3][4]. However, disagreements about care and treatment can persist when:

  • A parent does not acknowledge the need for care despite significant health risks.
  • A parent declines medical tests that are required to diagnose a serious, treatable illness.
  • A parent does not accept a diagnosis that requires medical treatment.
  • A parent does not provide a treatment they have agreed to.
  • A parent declines a treatment known to be effective in favour of no treatment or an unproven or potentially harmful treatment.
  • An HCP has not considered the full range of options to diagnose or manage a child’s condition.
  • An HCP is not aware or supportive of alternative interventions that the child or family wishes to pursue.
  • An HCP does not appreciate factors that are influencing a family’s health care behaviours or choices.

Identifying medical neglect from a child protection perspective requires a reasonable level of concern for harm or risk of harm due to parental failure to allow needed, accessible health care to be provided. Such care must offer a significant net benefit to the child when compared with the risks of alternative approaches [5]. 

Recent developments in patient- and family-centred care and decision-making have entailed a shift away from the notion of compliance (i.e., “Following the HCP’s orders”) to that of adherence, defined as “the extent to which a patient’s behaviour is consistent with the health care plan” [6]. Employing the concept of adherence implies that the HCP, the family, and the child (when appropriate) collaboratively developed and agreed to the health care plan.

How can HCPs best work with families when concerns of medical neglect arise?

1. Identify the decision-maker(s)

When a difference of opinion develops regarding a child’s health care plan, the HCP should step back, and re-approach the situation objectively and systematically. The first step is to ensure that the appropriate medical decision-makers are involved. With young children, a parent is typically the substitute decision maker (SDM). However, identifying the appropriate decision maker is more complicated with older children and adolescents. In Canada (excepting Quebec), a young person’s authority to consent to their own medical treatment depends on capacity rather than age. In Quebec, the age of consent is 14 years [7].

A child’s capacity to decide should be considered in all clinical situations. When a child expresses a dissenting opinion regarding their own health care from that of a parent or the health care team, HCPs have a responsibility to assess and document the child’s capacity to make that decision. Even when a child is found not to be capable of making a particular health care decision, seeking their assent and including them in the decision-making process remain recommended best practices. See the CPS statement Medical decision making in paediatrics for more information on consent and capacity [7].

2. Determine and explicitly state the goal of the health care plan

HCPs should collaborate with medical decision-makers to reach consensus on the overall therapeutic goal. Often, looking at broader objectives rather than specific health care interventions can assist with finding common ground. For example, parents who decline a gastrostomy tube for a child with inadequate weight gain and HCPs who favour a gastrostomy tube in the clinical scenario may be able to align around the overall goal of ensuring adequate nutrition for the child. This broader and non-controversial objective may facilitate a discussion of past and proposed interventions, as well as any possible alternatives, to achieve optimal nutrition. 

3. Clearly state and discuss the recommendation(s)

HCPs should consider all reasonable options for management. Information and recommendations that they provide to parents must be based on best practice and evidence. They should also be fully cognizant of—and strive continually to mitigate—their own personal biases. Recommendations on testing, management, and treatment as well as alternative or adjunctive therapies should be thoroughly considered and discussed. Parents should be invited to share information they feel is relevant for decision-making, including other options. Obtaining a second opinion from another expert in the field can sometimes provide new information or a different perspective to help move the discussion closer to a decision.

HCPs must evaluate the decision-maker’s understanding of recommendations on an ongoing basis and take steps to alleviate uncertainty or misapprehension. Building understanding may require involving a translator or cultural navigator, repeated discussions with family members or supporters, or presenting information in different formats (e.g., using diagrams, pictures, models, handouts, or graphs) [5]. HCPs may also need to take steps to understand and evaluate options proposed by patients or families by offering to consult with other health professionals or researching new treatments.

4. Consider the potential for harm

When parents do not consent or adhere to the recommendations of HCPs, considering the risk of harm to the child becomes paramount. Determining level of risk includes characterizing the nature and degree of harm that is likely to occur without care as well as anticipating the time before onset of harmful effects. The urgency and intensity of an HCP’s response is defined, in large part, by this assessment. For example, a situation involving a child with a life-threatening hemorrhage whose parents do not consent to a blood transfusion is handled differently from that of a young child with diabetes and a persistently elevated HbA1c when there are concerns for chronic non-adherence to care needs.

If a child requires urgent medical care to prevent significant harm and their parent will not or cannot provide consent, a child welfare authority must be notified immediately. In some cases, a legal hearing is held to decide whether decision-making authority should be placed, temporarily, with someone other than the child’s parent. In some jurisdictions, emergency care can also be provided if it is deemed necessary by the child’s HCP but a parent is unavailable, unwilling, or unable to consent to care. HCPs should take steps to familiarize themselves with the legislation in their province or territory. They can also consult with the Canadian Medical Protective Association (CMPA), a hospital lawyer, or organizational leaders regarding standard approaches in such situations and to seek advice around individual cases.

5. Understand the reasons for non-adherence

Many factors, both within and beyond the family’s control, may be preventing them from adhering to or agreeing with a child’s health care plan [5][6][8]. Personal, emotional, or mental health concerns, structural and social inequities, financial stressors, the inability to secure time off work, lack of child care options, limited community health resources (e.g., in-home health care or respite support), and other challenges can seriously impede a parent’s ability to meet their child’s health care needs [5]. It is incumbent upon the health care team to explore and work to alleviate the impact of such issues when medical neglect becomes a consideration.

Medical decision-making is influenced by emotions, beliefs, and values and can also be influenced by family or community members. An individual’s previous encounters with the health care system, or their community’s experience of health care, can also play a role. Such factors can outweigh an HCP’s recommendations [4] and should be identified, understood, and addressed early and proactively. Patient- and family-centred care includes understanding their perspectives. Occasionally too, a family’s values, spiritual beliefs, or cultural practices can lead to health care choices that are potentially harmful to a child’s health and well-being [9][10].

6. Explore every possible means of addressing impediments to adherence

When agreement between an HCP and decision-maker cannot be achieved or a barrier to care seems impassable, requesting assistance from other members of the child’s health care team may help. Nurses, social workers, child life specialists, clinical ethicists, patient care advocates, system navigators, and other medical colleagues can provide critical insights, connect with children and parents on a different level, and bring a fresh perspective to difficult cases. A colleague may also be able to provide a valuable second opinion, formally or informally. 

After obtaining the necessary consents, it may be appropriate for HCPs to advocate or engage directly with governmental, educational, mental health, or other community agencies to help alleviate the family’s specific impediments to care. 

Most parents prefer to collaborate with HCPs in medical decision-making for their child [4]. But when collaboration breaks down, HCPs should ask themselves whether the “therapeutic relationship” is actually therapeutic. It is possible that a change in approach, communication style, or to an alternative HCP is needed [3].

The use of complementary and alternative therapies (CATs) for children is common in Canada, and typically occurs alongside other medical treatment. HCPs are often unaware that they are being used [11][12]. In some cases, families choose to use these therapies in place of standard medical treatment. HCPs must take into consideration the nature and strength of the beliefs involved with such choices, and try to understand their basis and sources. When a CAT option has no reasonable possibility of benefit for the child but is also no (or low) risk, the HCP should explore parental willingness to proceed with both the recommended treatment and the CAT. The same approach is appropriate when a CAT has been shown to have benefit and does not interfere with other treatments. If a CAT is potentially harmful or risks significantly decreasing the benefits of a recommended treatment, the HCP should state this clearly to the parents and explain why this CAT cannot be supported as part of the child’s health care plan.

7. Ensure proper documentation

When there are concerns for medical non-adherence or neglect, HCPs must document all conversations with the parent, as well as any actions taken throughout the process of care. Documentation should be clear, accurate, objective, and non-judgmental. When required, letters written to the family should summarize the following information:

  • The child’s diagnosis and health issues
  • Current health status, course of illness, and care to date
  • Testing or treatment goals
  • Recommended investigations and treatments, as per the child’s health care plan
  • Reasons for testing, treatments, as per the child’s health care plan
  • Options for testing or treatment (including no testing or treatment)
  • For the recommended plan and each option (including no testing or treatment) include:
    • Possible benefits – likelihood, magnitude, and timing
    • Possible harms – likelihood, magnitude, and timing
    • Logistics (e.g., in-patient versus out-patient, costs, time away from school or work)
  • Specific concerns that have led the HCP to suspect medical neglect
  • The HCP’s understanding of the reasons for non-adherence with testing, treatment, or the child’s health care plan
  • The steps that the HCP or health care team have taken to address concerns
  • Proposed next steps

What steps should an HCP take when harm from medical neglect is suspected?

Sometimes, and despite making all reasonable efforts to collaborate with a parent on a health care plan, no consensus is reached or non-adherence persists. The HCP must then consider whether the current situation advances the child’s best interests or presents a risk of harming the child [13].

Throughout Canada, HCPs are legally required to report immediately and directly to child protective services when a child has experienced, or is at risk of experiencing, harm from a caregiver’s action or inaction. In situations of uncertainty, HCPs should consult directly with child protective services. They can also seek advice from a social worker or paediatrician with expertise in child maltreatment.

Initial reporting to child protective services must be by telephone. In complex cases, it is helpful for the child protection agency to also receive a letter that clearly describes the information outlined in section 7, above, using clear, non-medical language. Including information regarding the scientific evidence to support the recommended treatment is also helpful. HCPs are required to share all information deemed relevant for child protective services investigations, but not all information contained in the child’s medical record.

It is considered best practice to inform the family if a report is being made to child protective services, except when doing so could place the child or another person at risk. While informing a family of the duty to report, HCPs should remain non-judgmental and supportive, make all efforts to maintain the therapeutic relationship, and offer to continue providing care. If an ongoing therapeutic relationship is not possible, alternate arrangements for the child’s care should be made.

In some Canadian jurisdictions, an HCP who believes that an SDM is not acting in the child’s best interests can appeal to an independent board (e.g., the Consent and Capacity Board in Ontario) or involve a legal representative for the child (e.g., the Office of the Children’s Lawyer in Ontario). Even when such steps are taken, the HCP still has a duty to report the case to child protective services.

Summary

Usually, children, youth, their families, and HCPs work cooperatively to define and implement the best health planning for children. Agreement with, and adherence to this plan is improved when HCPs use respectful, inclusive, and collaborative decision-making approaches.

Sometimes, despite the efforts of families and HCPs, agreement on the best health care plan for a child cannot be reached, or an agreed upon plan is not followed. This difficult circumstance can put a child’s health at risk and requires the HCP to sensitively consider the issues at play, look at the situation from different perspectives, find common ground with the family, and address barriers to care. Despite doing so, HCPs may be called upon to act in their professional capacity to ensure that the child’s need for necessary and available health care is met.

Recommendations

Children, youth, and parents should be recognized by health care providers (HCPs) and health care systems as partners in the development and implementation of all aspects of a child’s health care plan.

In the situation where a child who lacks the capacity to make a specific health care decision is at risk of harm resulting from a parent’s inability or unwillingness to adhere to a recommended health care plan, HCPs should apply an objective, organized, step-wise, and nonjudgmental approach such as that outlined in this document.

HCPs and managers of health care institutions should attempt to identify and alleviate impediments to a parent’s efforts to ensure that their child receives needed care. This may include steps such as advocating for government support services for the family, waiving hospital parking fees, offering flexible appointment scheduling, or other measures as may be necessary.

HCPs should learn, practice, and use the skills necessary to communicate clearly, compassionately, objectively, inclusively, and without bias. Communication should be viewed as a critical aspect of a health management plan and specifically discussed by the health care team.

Medical educators at all levels (undergraduate, graduate, and continuing education) should include communication skills training in their core curriculums. Training should include developing child- and family-centred, trauma-informed approaches to communicating with children, youth, and their families around collaborative decision-making, conflict resolution, capacity assessment, consent discussions, and child protection concerns.

HCPs and organizations serving children and youth should develop policies and protocols to minimize the likelihood of significant disagreement between HCPs and families and to manage such issues when they arise. System-level strategies may include promoting a culture and practices that encourage collaborative decision-making and open communication; partnering with communities commonly served by the organization; tracking and addressing problems that emerge from difficult cases; and ensuring that patients and families know how to bring their concerns forward.

Acknowledgements

The authors wish to thank Drs. Sarah Schwartz and Dr. Marlene Thibault for their significant contributions to this work. This statement was developed in consultation with the Canadian Paediatric Society’s Bioethics Committee. It has also been reviewed by the CPS Acute Care, Adolescent Health, Community Paediatrics, and First Nations, Inuit and Métis Health Committees of the Canadian Paediatric Society.

CANADIAN PAEDIATRIC SOCIETY CHILD AND YOUTH MALTREATMENT SECTION EXECUTIVE (2019-2020)

Executive members: Emma Cory MD (Vice President), Natalie Forbes MD (Secretary-Treasurer), Clara Low-Décarie MD (Member-at-large), Robyn McLaughlin MD (Member-at-large), Amy Ornstein MD (Past President), Michelle G.K. Ward MD (President)

Principal author: Michelle G.K. Ward MD, Burke Baird MD

References

  1. Dubowitz H. Neglect of children’s health care. In: Meyers JB (ed.), The APSAC Handbook on Child Maltreatment, 3rd edn. Sage: Thousand Oaks, CA; 2011.
  2. Dubowitz H, Black M, Starr RH, Zuravin S. A conceptual definition of child neglect. Crim Justice Behav 1993;20(1):8–26.
  3. Fiks AG, Jimenez ME. The promise of shared decision-making in paediatrics. Acta Paediatr 2010;99(10):1464-66.
  4. Lipstein EA, Brinkman WB, Britto MT. What is known about parents’ treatment decisions? A narrative review of pediatric decision making. Med Decis Making 2012;32(2):246-58.
  5. Jenny C; Committee on Child Abuse and Neglect, American Academy of Pediatrics. Recognizing and responding to medical neglect. Pediatrics 2007;120(6):1385-89.
  6. Smith BA, Shuchman M. Problem of nonadherence in chronically ill adolescents: Strategies for assessment and intervention. Curr Opin Pediatr 2005;17(5):613-18.
  7. Coughlin KW; Canadian Paediatric Society, Bioethics Committee. Medical Decision-Making in Paediatrics: Infancy to Adolescence. Paediatr Child Health 2018;23(2):138-46.
  8. Davie M. Improving adherence to treatment in child health. Paediatr Child Health 2013; 23(10 Symposium: Special Needs):443-48.
  9. Linnard-Palmer L, Kools S. Parents’ refusal of medical treatment based on religious and/or cultural beliefs: The law, ethical principles, and clinical implications. J Pediatr Nurs 2004;19(5): 351-56.
  10. American Academy of Pediatrics, Committee on Bioethics. Policy statement: Conflicts between religious or spiritual beliefs and pediatric care: Informed refusal, exemptions, and public funding. Pediatrics 2013:132(5):962-65.
  11. Adams D, Dagenais S, Clifford T, et al. Complementary and alternative medicine use by pediatric specialty outpatients. Pediatrics 2013;131(2):225-32.
  12. Vohra S, Clifford T; Canadian Paediatric Society, Drug Therapy and Hazardous Substances Committee. Children and natural health products: What a clinician should know. Paediatr Child Health 2005;10(4):227-32.
  13. Diekema DS. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theor Med Bioeth 2004:25(4):243-64.

Disclaimer: The recommendations in this position statement do not indicate an exclusive course of treatment or procedure to be followed. Variations, taking into account individual circumstances, may be appropriate. Internet addresses are current at time of publication.

Last updated: Feb 8, 2024

In this section

Related information

statements and practice points

Paediatrics & Child Health