When Medical Care and Parents Collide-Parents Who Refuse Testing and or Treatment for Children

Abstract

Medical Neglect is a challenging diagnosis. Physicians and parents may clash over what they both perceive to be in the best interest of the child. Cultural, religious, financial, or philosophical differences between the health care providers and families can be difficult to negotiate. This paper reviews the definition of medical neglect and describes barriers that can prevent families from following medical recommendations for their child. Involvement of statutory authorities to intervene in cases of medical neglect may be helpful, but also may result in increased friction between parents and the health system, often without a satisfactory outcome for the child. Recognizing and then overcoming such barriers, as well as improving communication can help the family to begin to cooperate with medical recommendations. The paper will present an approach to families, parameters for reporting when all other options have failed, and the child remains at risk for harm due to the failure of the parent or caregiver to follow medical advice. The ultimate goal of any intervention is to ensure that children can achieve their full potential, in a nurturing and caring environment.

The provision of medical care is based upon the premise that the health and well-being is desired by the recipient of that care. Medicine has advanced to the state where many diseases and conditions that were once considered fatal or life-changing can now be treated, and even prevented. The return to health and the prevention of disease is a considered a reason to celebrate the state of modern medicine. Physicians enter practice with this ideal and spend many years in the acquisition of skills and knowledge to this end. The social expectation is that patients have a high regard for that knowledge and those skills. The contract between physician and patient has been considered sacred for millennia.

In pediatrics and specialties where the care of children is the focus, the parent or guardian traditionally has the right to make decisions in the best interest of their child. The majority of those interactions between parents, child and health care provider conform to the expectations of both the provider and the recipient of care. When the parental decision has little consequence to the health of the child and is considered within the right of the parents to choose, there is little concern. However, when critical treatment is recommended and declined, or avoided, resulting in severe health consequences, or risk of death, the relationship between the medical system and parents becomes adversarial. Both sides contend the child’s best interest is at the core of the issue. The neglect of medical care becomes the issue. Medical neglect is defined as the failure to provide prescribed medical care or treatment or failure to seek appropriate medical care in a timely manner (Jenny 2011). At what point medical neglect becomes reportable to the state social services agencies for state intervention is not always clear, nor well defined in the law. Government-run social welfare systems are in place throughout the US and many countries to support the wellbeing of children when parental decisions are at odds with the child’s needs. The questions addressed in this paper will include: 1) What is medical neglect?; 2) What are risk factors for medical neglect?; 3) When do the parents “lose” the right to decide the medical treatment of their own child?; 4) When does the state step in?; 5) Is there an interim approach that engages parents and medical providers to reduce the adversarial nature of this situation?; 6) What about other barriers, long held beliefs, religion, culture, mental health, lack of resources, knowledge, or educational background?

Medical neglect in the US constitutes a small portion of the reported types of abuse or neglect (Boos and Fortin 2014). Neglect in general, however, is the most commonly reported type of child maltreatment in the US (“Child Maltreatment, National Child Abuse and Neglect Data System,” 2016) and the most common reported or not.. The American Academy of Pediatrics, Committee on Child Abuse and Neglect (COCAN) published a clinical report that considered two forms that medical neglect often takes: 1) failure to heed obvious signs of serious illness and 2) failure to follow a physician’s instructions once medical care has been sought (Jenny et al. 2007). This clinical report considered the factors that are required for the diagnosis of medical neglect and discussed barriers (see Table 1). Other considerations are whether applicable state laws define medical neglect in a manner that triggers the physician’s mandatory obligation to report this form of child maltreatment.

Table 1.

ADAPTED from Jenny et al. Pediatrics 2007

Factors to consider in the determination of Medical Neglect.

1) The harm or risk of harm to the child because of lack of health care

2) The recommended health care offers significant benefit to the child

3) The anticipated benefit is significantly greater than it’s morbidity; reasonable caregiver or parent would be expected to choose the recommended treatment over non treatment

4) The recommended health care must be available

5) The caregiver has been informed and understands the medical recommendations given.

The Child Abuse Prevention and Treatment ACT (CAPTA 2018) is the federal standard that states follow in developing their respective standards for definitions of child abuse and neglect (Administration for Children Youth and Families, 2014). CAPTA includes a definition of medical neglect that is encompassed within overall child neglect (Definitions of Child Abuse and Neglect: State of Statutes 2014). A review of state laws specifically regarding neglect generally defines medical neglect as the failure of a parent or other person with responsibility for the child to provide needed food, clothing, shelter, medical care, or supervision to the degree that the child’s health, safety, and well-being are threatened with harm. This document outlines the various states’ definition of Medical Neglect, which range from the description of neglect including medical needs, to the more explicit state laws defining when the requirement for medical care places the child’s health and well-being at risk. Additionally, nine states and American Samoa specifically define medical neglect as the failure to provide any special medical or mental health care needed by the child. Four additional states define medical neglect as withholding medical care or nutrition from infants with life-threatening conditions. Article 24, part 1, paragraph 1, of the UN Conventions on the Rights of the Child recognizes the right of the child to the “enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health (p.7).” Additionally, part 3 indicates that “States parties shall take all and appropriate measures with a view to a view to abolishing traditional practices prejudicial to the health of children” (Convention on the Rights of the Child 1990, p. 7). Based upon both US and international standards children, have the right to health care that allows them to attain the best possible health, treatment, and recovery from illness. This is in the context of allowing parental authority over their children. The doctrine of parens patriae allows the state to step and act as a guardian for the child and make decisions when the parents cannot (“Parens Patriae Legal definition, n.d.”). This is the doctrine that guides the US juvenile justice system.

Clearly, there are situations where the child’s immediate need for medical care takes precedent over parental desires. Regardless of religious, social, or cultural beliefs, these situations often occur once a child has presented to medical care, and is need of life saving, immediate interventions. In most cases it would be difficult to imagine a situation where the medical system would not intervene to save the life of a child, even over the objections of the parents. The exception would be children where treatment of the pre-existing condition or disease is, in the opinion of both physician and parent, contrary to the best interest of the child. However, in some states physicians may not withhold treatment even in such cases. An example of this would be to withdraw support in child whose condition is imminently fatal and who cannot survive without medical support such as mechanical ventilation.

The more difficult and complex situations often occur in the setting of chronic illnesses, such as asthma, cystic fibrosis, congenital heart disease, diabetes, chronic disability, cancer, or other diseases where the parent and the medical system are at odds or where the parent fails to follow through with the recommended treatment. A recent study describing the experience at a tertiary children’s hospital in Australia found the majority of medical neglect cases occurred in children with complex multisystem disorders (Parmeter et al. 2018). In the example of insulin-dependent diabetes, failure to provide insulin is a straightforward example of medical neglect and will result in fairly acute and life-threatening complications. The more complex issues regarding lifestyle, diet, and exercise may not be immediately life-threatening but will significantly impair the quality and quantity of life over years. Several prominent cases of children diagnosed with cancer have been in the national media. The balance of risk versus benefit of treatment is considered. That treatment itself can be difficult, painful, and result in known complications, with the choice of no treatment or alternative, unproven approaches that will, statistically result in death is weighed. The age and development of the child is considered: are they a mature minor? Will they cooperate with difficult and invasive treatments? Where do the rights of the parent end and the state begin? Cases of physical or sexual abuse, or severe neglect of basic necessities is more straightforward than failure to provide medical care in these situations.

The medical system can be ill-equipped to approach the more complex and often long-term issues of medical neglect. The predictable power struggle between the physicians’ desire to do the right thing and the parents’ failure to follow medical recommendations ensues. It is often, only after repeated attempts to engage parents with repeated failure on the part of the physician, that the threat of a report to Child Protective Services (CPS) is made. Families may immediately feel defensive, accused, and alienated from the medical provider. They may seek care elsewhere, or not at all, further compromising the child’s health and well-being. Physicians may be relieved that a difficult patient has gone elsewhere for care, but remain concerned for their patient, feeling powerless to help. Even when a referral to Child Protective Services is made, the result is often less than optimal, with the ensuing legal issues and court involvement. Social workers with little medical background can be confused by the complex issues of parent choice, treatment, and risk to the child. In cases of long term chronic medical neglect where the immediacy of risk is not clear, but health complications are emerging, the child welfare system is also ill-equipped for the intensity of involvement in a family that may seem engaged and loving, yet insistent in their own approach. The families in dire poverty, with few resources, poor transportation, low intellectual skills or mental illness, lack of understanding of the medical problem and little in their power to change their own situation may require more than society can offer.

Risk Factors for Medical Neglect

Poverty

Poverty is the leading risk factor for neglect overall (Brown rt al. 1998; Dubowitz 2009). The experience that medical neglect occurs often in families without health insurance or on public health insurance supports this fact. Many families lack the necessary financial resources to provide care for their children with acute and/or chronic illness. Families without medical insurance must pay for medical care and medication out of pocket. For those families that do have medical insurance, copays and deductibles often still cause significant financial burden. For other families, even the act of taking time off from work, whether to provide needed care for their child or to provide transportation to medical appointments, means loss of income or perhaps even loss of their job. Some families delay seeking medical care due to concerns about the cost of the appointment itself, irrespective of what treatment may be recommended or prescribed. This can, in turn, lead to more frequent emergency department visits as children are not seen routinely for primary preventative care or evaluated early in the course of their illness.

The cost of medication may also be prohibitive for families. For families without insurance, this is a frequent concern and many families are unable to afford medication for their children. Families with insurance frequently must pay for a portion of their prescription or may find that the recommended medication is considered “non -formulary” and therefore not covered. It is with some frequency that physicians are asked by families to consider prescribing a different medication due to the cost constraints experienced by families.

Children with complex medical needs often require durable medical equipment as well as modifications to their home environment for their care. While insurance provides for many of these needs, there is often a lengthy procedure that must be followed in order to obtain these items, which can in itself be a deterrent for some families. Unfortunately, not all recommended durable medical equipment is covered by insurance. Furthermore, insurance does not typically pay for modifications to the structure of the home itself. For families living in poverty, particularly those with little control over their home environment, ensuring the safety of a child’s home environment may be a difficult task. For instance, a family living in subsidized housing may have difficulty ensuring that their home is fully wheelchair accessible and free from environmental irritants such as tobacco and insect infestation.

Assessment of a family’s financial needs and facilitating access to public health insurance plans designed for low income families may assist greatly in their ability to provide care for the child. Directly assessing resources that a family may have or those resources that can be provided can be challenging.

Family Composition

Some family characteristics have been associated with higher rates of neglect. These may be broadly grouped as communication/interaction patterns, family composition, domestic violence, and family stress (Dubowitz 2009). For example, a family’s communication pattern can be protective. Families with a good emotional support system and with consistent discipline methods are more likely to have positive outcomes. Sharing similar beliefs and values, as well as a sense of culture and spirituality among family members appears to offer protection. In contrast, families in which neglect is present often have difficulties with communication and interacting in a positive manner (Jenny et al. 2007). These families may be more chaotic and lack a sense of shared values.

Family composition has been shown to be associated with the incidence of neglect. Living in a single parent household dramatically increases the risk of neglect (Brown et al. 1998; Dubowitz 2009). Living in a single parent household may also be associated with other social risks (Bath and Haapala 1993). For instance, children who live in single parent households are more likely to live in poverty that children living in two parent households (Brown et al. 1998). Single parents must balance the many demands of family life, including household chores and supervision of children, with the demands of their work life. Having another parent or guardian in the home permits the demands of family life to be shared among both parents and can lessen stress and anxiety.

Children who live in homes where domestic violence is present are at a greater risk of being the victims of neglect (McGuigan and Pratt 2001). Domestic violence in the home is a predictor for both physical abuse, psychological abuse and all forms of neglect, including medical neglect (McGuigan and Pratt 2001). Caregivers who have been the victims of domestic violence may not be able or willing to protect their children from also being victims of abuse. Having domestic violence service providers’ partner with child welfare agencies may help support not only adult victims of domestic violence but also their children.

Neglectful families are more likely to have experienced chronic environmental stressor stressful life events. Families that are coping with environmental stressors such as poor housing or unsafe neighborhoods, financial difficulties, unemployment may not have the capacity to appropriately care for the needs of their children. Similarly, stressful life events including the loss of a job, illness or death of a family member, or substance abuse difficulties may compromise a caregiver’s ability to provide for the needs of their children.

Mental Impairment/Mental Illness

The mental capacity of a child’s caregiver figures prominently in cases of medical neglect. When a child’s caregiver is developmentally delayed or cognitively impaired, they may not have the capacity to fully understand a child’s condition, understand the signs or symptoms of illness, or understand how to respond to a child’s health care needs. Caregivers with cognitive delay may require significant support from social service agencies in order to support their efforts to provide for their children’s basic and health care needs. At times, caregivers may not have the capacity to adequately care for their children even with supports in place and children may require additional protection for social service agencies.

Careful attention should be paid to a caregiver’s mental health history. Mental illness may interfere with a caregiver’s capacity to care for their child. It is important to ensure that caregivers are being followed by a mental health provider and are compliant with their recommended treatment plans. Caregivers who are not compliant or who are struggling with undiagnosed and/or untreated mental illness may not be able to adequately meet the needs of their children. Social service supports may be useful in providing caregivers with assistance.

Finally, caregivers who struggle with substance abuse may also not have the capacity to provide for their child’s needs. A caregiver’s capacity to fully understand their child’s needs may be impaired when they under the influence. This puts children at additional risk for injury during these times. In addition, children may be at risk for the potential ingestion/exposure to harmful drugs/alcohol in their home environment (Thyen et al. 1997). Again, social supports must be put into place to support caregivers in their efforts to remain clean and to provide for their children’s needs.

Chronic Illness in the Child

The care of children with complex medical health care needs and chronic illness provides additional challenges for all caregivers. These children are often seen by multiple medical providers and require frequent medical appointments for routine care. Their medical condition often requires multiple therapies, including speech, occupational, physical, and/or behavioral therapy. They often require daily administration of multiple medications at home. Their medical condition often requires the use of special medical equipment and monitoring. They may require special diets or not be able to tolerate food by mouth. They may be more likely to become serious ill quickly. During times or illness, their care needs often increase dramatically. Care for medically complex children is challenging in the best of situations. When families are struggling with limited resources, mental health care needs, substance abuse, or other challenges, can be overwhelming.

Children with complex health care needs/disabilities are more likely than their peers to suffer from child maltreatment (Sullivan and Knutson 2000). Neglect is the predominate form of maltreatment for these children. Initial concerns for neglect often arise from missed scheduled appointments. Some families with medically complex children may fail to keep scheduled appointments. One can appreciate how this might happen when a child has multiple appointments scheduled with multiple providers. Ensuring that the child has a medical home can be useful to help prevent missed appointments and duplication of care. The primary care physician can partner with the child’s family to coordinate the child’s medical care across therapy providers and subspecialists. The primary care physician may also help family review the treatment plan to ensure that the family is comfortable and knowledgeable regarding the child’s medications and treatment regimen. If concerns regarding missed care arise, the primary care physician may be best suited to work with the family to identify barriers to the provision of care. However, if missed appointments or failure to adhere to a recommended treatment plan becomes a pattern, rather than an isolated event, additional steps may be necessary. Multidisciplinary team meetings can be useful in this instance. A scheduled meeting with the child’s family and many or all of a child’s care providers can help facilitate an overall understanding of the child’s condition and required medical care. It is important to discuss how deviation from this plan can adversely affect a child’s health. Medical providers and family members can partner to develop a care plan and agree to follow that plan moving forward. At times, social services may be need to be involved if there is an adverse effect on the child’s health or the child is put at risk of harm.

Social Issues

For school-aged children, involving personnel at the child’s school is often helpful. Daycare providers, teachers, and other school personnel are in a unique position to advocate for children. They are often the only other individuals, outside of a child’s family or guardians, who have regular, daily contact with the child. This permits them to play an important role in the identification, evaluation, prevention, and treatment of abuse and neglect.

When concerns of neglect arise, conversations with school personnel can often provide additional insight. School personnel may provide information regarding a child’s school attendance, parental response to concerns raised by school personnel, and the provision of items required to maintain a child’s health and well-being, including prescription medications, durable medical equipment, clothing, and food. Additionally, school personnel can partner with families and medical providers to help improve compliance with recommended medical treatment. For a child whose family struggles to consistently administer a prescribed daily medication, establishing a partnership with the school nurse may ensure that the prescribed medication is given on a consistent basis.

A Proposed Paradigm

The concept of shared decision-making in the approach to many complex health care needs of children and may be a possible paradigm for families with concerns of medical neglect. Shared decision-making processes engage the family and, if appropriate the child, and allow them some empowerment in the process. (Robertson et al. 2018; Wyatt et al. 2015) Often, the basic cause of medical neglect communication with families is the root of the issue. This is especially true in the cases of children with complex needs or life altering illnesses. Health care providers, especially physicians, may feel they are communicating adequately with families. Families and parents can still feel that their opinions and needs are not being met within a health care system. Recognizing the complex barriers that have been described in this paper allow us to develop a paradigm approach to medical neglect.

In working with families who are neglectful, the goal should be to reduce both the risks for neglect as well as the effects of neglect itself should be developed. When developing outcomes and goals, four areas should be considered; the child, the caregivers, the family system, and the environment. In order to promote a family’s success, goals should be specific, measurable, achievable, realistic, and time limited.

The Child

The goal for the child typically focus on a child’s behavior, development, mental health, physical health, peer relationships, and education. Goals should be clear and specific and strategies to achieve these goals should be designed specifically to meet the identified need. For example, a goal for a child with behavior concerns, such as acting out or tantrums, might be decreased episodes of acting out and less times spent out of school. This child and family might benefit from behavioral therapy and assistance with the development of appropriate social skills.

The Parents

Goals that are developed for parents or caregivers may address a caregiver’s mental health, difficulties with substance abuse, or parenting skills. Again, outlining clear goals and identifying strategies to promote success are crucial. For a parent with mental illness struggling with a defiant child, identifying a mental health service provider and providing targeted behavioral interventions such as Parent Child Interaction Therapy (PCIT) might be beneficial.

The Family System

Goals that are developed to address the family system may focus on communication patterns and social supports. Helping families develop a network of social supports is crucial to preventing neglect. This may help caregivers buffer stress and empower them to deal with the demands of child rearing.

Social Capacity

Goals that focus on the family’s environment may help eliminate risk factors for neglect. At times, the lack of concrete resources affects a family’s ability to provide for their child’s basic needs. Ensuring that families have access to safe housing, food, child care, assistance with energy bills, access to free or low-cost medical care, and transportation can help reduce a family’s stress and may empower them to address other issues essential to their success in adequately providing for their children’s needs.

The decision to involve statutory authorities such as Child Protective Services (CPS) in medical neglect cases is difficult. Many medical providers fear that reporting a child will result in the child receiving less care because the family will leave the practice. The basic approach to reporting would be to question whether or not the medical team has communicated effectively to the parent/caregiver regarding the child’s needs, whether reasonable effort to encourage compliance of the family/parent/caregiver have been exhausted, and whether barriers to care have been adequately addressed. Finally, an analysis of the harm both imminent and long term should be part of any assessment. CPS case workers are not medically knowledgeable and will require succinct and straightforward reports that lay out the process that has been undertaken and the risks to the child. If medical language is used, it should be explained in lay terminology.

The medical team should also present a plan to the agency that is also understandable and doable. Every effort should be made to engage the family or the community in assisting the family to obtain and follow through with the appropriate medical care. If, all avenues are exhausted and the medical team feels the child is at significant risk of harm both in the short and long term, consideration for recommendation of placement outside the home is appropriate. With medically complex children or children with chronic health conditions, CPS agencies may need to have resources that include medical foster care. These families are specially trained and have capacity to meet the needs of complex care. The challenge is that placement of children from rural or under-resourced communities may require placement outside of the usual foster care network in the county or region served by the agency. This may mean disrupting the care that has been established. These potential geographic factors must be taken into consideration.

Following a report to CPS, medical providers should if possible, request a face-to-face meeting with the agency. A medical Social Worker can be invaluable in providing facilitation and communication with community-based case workers. The medical Social Worker can garner trust and gather information from the family’s perspective using empathic, active listening. If common barriers exist, such as lack of transportation or concern about costs, the Medical Social Worker is likely to have knowledge of community-based resources to assist the family. The Medical Social Worker may be better able to communicate about the child’s condition and treatment plan in layman’s terms to help the family understand the need for treatment. This professional may be able to act as a mediator to help both sides understand each other’s concerns and unify them under the common goal of providing the best care for the child and avoid involvement of the local child welfare agency.

During placement every effort should be made to continue to include the parent/caregiver in ongoing medical appointments and care for the child. The child welfare system is designed to help families support all members while remaining intact. Most cases of pure medical neglect will not result in a child being placed in out-of-home care. In other cases, where parents have been grossly negligent of their child needs the physical harm to the child is usually more urgent than the neglect of medical care. In these cases, the child welfare agency may seek custody of the child and place them in out-of-home care. However, it is important to note that most time parents retain medical decision making when their child is in foster care, so this is not a viable solution when parents disagree with the proposed plan of care.

The ultimate goal is for eventual reunification following demonstration of the ability of the caregiver to once again return to their role in the child’s life. The juvenile court can play a role in mandating benchmarks, and goals that will result in the process of reunification.

Fig. 1 provides a pathway approach to concerns of medical neglect. The pathway begins with the determination of imminent risk or harm to the child. Assessment of the risk of harm is and the imminent nature of the risk is the center of the approach to any case of medical neglect. Effective communication with the parents and caregivers is the core of any pathway. Addressing resources to overcome barriers to as transportation, support for medications, durable equipment, home modifications, and respite care may be more successful than trying to change attitudes, culture, or religious convictions.

Fig. 1.

Pathway approach to families with medical neglect concerns

Conclusion

The approach to medical neglect is complex and often time consuming. Medical providers should evaluate the risk of harm to the child against disruption of family units. Addressing the specialized needs of children in the context of many complex and sometimes unsurmountable barriers that the family/parent/caregiver faces can be overwhelming. Working closely within the medical systems, utilizing available community resources, often requires the oversight of a care coordination team that includes medical specialists, nurses and social workers. The ultimate goal is to ensure that children, whether their medical needs are serious but temporary, long-term, complex or life-limiting, can achieve their full potential, in a nurturing and caring environment.

Compliance with Ethical Standards

Disclosure of Interest

The authors have no conflict of interest.