Understanding Medical Neglect: When Needed Care Is Delayed or Refused

Abstract

Though the most common form of child maltreatment, neglect can prove among the hardest to diagnose, and intervention is equally difficult. In considering neglect of a child’s medical needs, a number of factors play important roles. Diagnosis should be motivated foremost by the intent of providing the best ongoing care for the patient, supplying what the child has not been able to receive from the caregiver. Characteristics peculiar to the patient, the parents, the pathologic condition, its possible treatments, and the mutual understanding between the child’s caregivers and the treating professionals all help determine why the therapeutic relationship has failed and which interventions will be most effective. Religious and cultural considerations may lead a family to refuse medical treatments, occasionally to the child’s detriment. The caregivers’ wishes must be taken into account, but legal precedent has affirmed that the patient’s welfare remains the paramount concern. Sorting through the opinions and providing clarity can be a challenge. Finally, good medical care can help prevent medical neglect in many cases. Clear communication and empathy remain hallmarks of good medical practice.

The parent’s responsibility to care for a dependent child is one of the earliest and most universal mandates of civilization, but not all parents can provide everything that their offspring need. For some, the omission is involuntary and even unavoidable, as after natural disasters or incapacitation; for others, it may appear as if the neglect could have been avoided, had the parent acted differently. If a child’s suffering can be avoided, something must be done.

Neglect is the most common form of child maltreatment, constituting 3 of every 4 calls to Child Protective Services (CPS) and a similar percentage of substantiated cases. Though it rarely involves a deliberate attempt to harm a child, neglect is not a benign form of abuse. The 2016 survey by the U.S. Children’s Bureau’s National Child Abuse and Neglect Data System (NCANDS) survey (US Department of Health and Human Services 2016) identified 75% of child abuse fatalities as the outcome of caretaker neglect. Nor are the long-term consequences minor. Early neglect has been associated with widespread impairments in language, emotional self-regulation, cognition, and even in later adult physical health (Bick and Nelson 2016; Spratt et al. 2012).

When medical needs are neglected, the deleterious consequences are often more immediate, and more often fatal. In 2016, while medical neglect accounted for only 2% of calls to CPS, it accounted for 5.7% of all child fatalities due to child maltreatment (US Department of Health & Human Services, ibid). Medical neglect can take many forms, but most commonly results from a caregiver failing to seek medical attention for a disease or injury, or from the failure to follow through on a medical plan of care for a dangerous condition. This article will discuss the challenges in diagnosing and intervening in cases in which medical or dental care may have been neglected.

Defining Neglect

Our definition of neglect may be said to depend on the intent of the definer. Often, perhaps too often, the intent seems to be to find someone to blame for morbidity or death. In this context, the legal definition seeks to prove omission of care by a parent or guardian, resulting in harm or potential harm to a child. California, for example, defines Severe Neglect as the negligent failure of a parent/guardian or caretaker to provide adequate food, clothing, shelter, or supervision where the child’s health is endangered, including severe malnutrition (Legal Analyst’s Office, State of California, 1996). In focusing on the caregiver’s role, however, we risk conceptualizing neglect as a one-dimensional construct, an event that would not have occurred but for the actions (or inactions) of an individual or family.

We might find it more useful, and more in keeping with the medical role, to adopt a definition based less on blame, and more on constructive intervention. Asking “What does this child need, and how can it best be provided?” helps providers to recognize that the neglect of a child is a complicated, multifactorial, and dynamic situation (Dubowitz et al. 1993). This broader rubric subsumes the “whodunit?” approach; it is obviously critical to know which caregiver(s) might have behaved differently to prevent harm or risk, but it also encourages professionals not to stop there. Incarceration of a negligent parent and foster care placement, while sometimes necessary, rarely provides for a safe and stable future relationship. Additional options might include drug dependence treatment or mental health interventions, mentoring, or other community involvement.

Diagnosing Neglect

When a child presents to care too late or fails to follow what was felt to be a reasonable medical plan, medical professionals consider caregiver neglect in the differential diagnosis. Neglect can be said to have occurred if a hypothetical “reasonable person” in the same situation would have acted differently. To make the diagnosis, a number of variables must be weighed (Dubowitz 2002). It must be clear that the condition in question does pose a risk of significant harm, harm which could be forestalled by accepting the effective treatment. The treatment’s benefit must outweigh its potential for harmful side effects. This safe and effective treatment must be accessible to the patient and caregivers. Finally, the medical provider’s explanations and recommendations must be understood by the family. Each of these criteria is discussed below:

Harm or Potential Harm

It must be proven that the condition in question poses a risk of significant harm. The standard of “harm or potential harm” presents difficulties, as harm, let alone potential harm, can be difficult to assess and prove, and the “grey areas” can be vast. Should, for instance, exposing a child to a small risk of a great harm (for example, vaccine refusal) be considered to be as culpable as exposing her to a higher risk of a lesser injury (e.g.: allowing the child to ride a bike without a helmet)? Should repeated exposures to harm be weighed more severely than a single exposure? What if no consequence was observed?

Can the dangerous condition be easily recognized as such? Some illnesses are more obvious than others. Symptoms of bacterial meningitis, for example, might be more compelling than those of high blood pressure. Similarly, prevention is traditionally the most difficult “sell”, as the individual needing prevention is healthy at the time, and the risk only theoretical.

Child Protective Services (CPS), for obvious reasons, tends to follow a “harm” standard and only rarely intervenes in situations perceived to be merely risky. When making a referral, it is the responsibility of the medical professional to help the authorities understand what science tells us about the nature and severity of the risk to the patient.

Treatment Issues: Efficacy, Risk, and Benefit

When a caregiver rejects medical care for a child’s condition, it must be clear that the care carries a benefit to the child, and that the risks of the treatment do not outweigh those of the illness. It can be difficult to state with complete assurance that a particular intervention will be successful. While there is a strong evidence base for many treatments, some are admittedly only marginally useful, or may even be experimental. This estimate of value must be balanced against the potential cost to the patient’s well-being.

Medicine, surgery, and even lifestyle change can have perceived costs and risks. Here also, there is wide variation. With most antibiotics, for example, the risk of use is low and side effects are minor and few, while for chemotherapy, the thought of very uncomfortable side effects can deter even the most conscientious patients from adhering to a regimen.

Access

It must be clear that, once it is agreed to be relatively safe and effective, the treatment for the dangerous condition was in fact accessible to the caregivers. This might involve its physical presence in the community, its affordability, and the family’s mobility. Poverty, lack of transportation, and isolation are all factors to be considered in understanding a family’s lack of adherence to medical recommendations.

Caregiver’s Understanding

Finally, it must be shown that the caregivers did understand all of the above factors. For medical providers, talking to a caregiver about a child’s proposed treatment is not enough. The discussion of efficacy and risks must be a two-way exchange and understanding confirmed before adherence can be expected. Validating and normalizing a caregiver’s concerns before offering advice can keep the exchange from being overly defensive or even adversarial. It should be stressed often that the caregivers and medical professionals share a goal of keeping the child safe and healthy.

Similarly, it may often be vitally necessary to discuss issues that bear considerable stigma. It can be very difficult for even a desperate parent to admit to poverty, mental health challenges, violence, or drug use, to name a few, for fear of being judged or disrespected. Again, introducing these topics in an open and matter-of-fact way (“Since so many people in our community have to deal with ___ , we’ve been asking all our patients…”) helps to reduce perceived stigma. At the very least, it can open the door to future discussions. Questions should be open-ended and allow generous time for a reply.

Physicians are comfortable discussing the evidence basis for their treatment recommendations, but it can be difficult to remember that many patients may have learning disabilities or a low level of health literacy (Dharmapuri et al. 2015). Though only weakly correlated itself with non-adherence, low health literacy may mediate other factors (Zhang et al. 2014). A parent who does not understand the severity of the illness or have proper information to weigh risk versus benefit cannot be expected to make a wise choice and may reject medical care or simply fail to follow through.

Intervention

Diagnosing medical neglect is only the beginning of a longer process, the goal of which is to see the child in a nurturing environment in which medical needs will be provided for. Assuming that the caretaker did not see the situation as would the hypothetical “reasonable person,” we can ask: where was the disconnect? Those who would help must put themselves in the place of the negligent caregiver, asking what information or understanding would have led to a better outcome. As mentioned above, there may be more than one answer, depending on the interplay of factors affecting the child, family, and environment. Identifying those factors can help guide effective interventions.

An ecological model of maltreatment reflects these complicated interactions (Belsky 1980). In this conceptual framework, which resembles the famous Russian nesting matryoshka dolls, the child can be visualized at the center, surrounded by his family. The nuclear family is in turn surrounded by the extended family, which is in turn surrounded by the community. Each level brings its own strengths and weaknesses and affects the others uniquely.

Child Factors

Some children are more challenging than others. Age and temperament may play roles. Medical neglect, not surprisingly, disproportionately affects children with chronic illnesses. In one study, 91% of children reported for medical neglect suffered from chronic illness (Fortin et al. 2016). Children whose medical needs are neglected, especially those with chronic illness, often suffer from other forms of neglect (Jaudes and Diamond 1986).

Parent Factors

Parents’ intelligence and education affect decision-making, as do previous experiences with medical care. Learning disabilities, literacy issues, and language barriers challenge communication of complicated medical issues. A history of early trauma may heighten anxiety and impair interactions. Mental illness, drug or alcohol use, and family violence may impose priorities that are difficult for others to comprehend, and which distract from the child’s proper care (Friedman and Bilflick 2015).

Family Factors

The organization of family interaction can be a determinant of medical neglect. An authoritarian structure and social isolation can concentrate family decision-making in an unhealthy way. Disorganization and lack of effective extended family support can impede adherence to a complicated medical regimen. Not surprisingly, socioeconomic status has been strongly correlated with neglect of all sorts (Sedlak et al. 2010; Fortin et al., ibid.; Jaudes & Diamond, ibid).

Community Factors

Communities vary widely in resources, from access to medical subspecialties to employment opportunities to basics such as food and shelter. On a wider scale, availability of drug treatment, mental health programs, and even public transportation are community factors that can all play a role in preventing medical neglect.

Community Factors: Professionals

Even when they are available, well-meaning medical professionals can contribute to the likelihood of medical neglect. Unless communication is clear and understanding confirmed, there remains a significant risk of non-adherence. It is far easier to deal with caretakers’ concerns before a medical need has been neglected, but too often medical communication is a one-way discussion (Opel et al. 2013). Effective medical care relies on a contract between the patient and the one providing medical advice. Like all contracts, to be effective this one requires common understanding, which in turn depends on clear two-way communication.

Societal Factors

Finally, a parent’s ability to provide medical care may be affected by broader societal concerns. Availability of resources, from health insurance to specific mental health interventions to drug and alcohol programs for parents, depends to an extent on the priorities of society as a whole. Any intervention that fails to recognize and address even one of these salient factors will fall short of its goal.

When Families Refuse Care: Religious and Cultural Considerations

Sometimes, a caregiver who fully understands the medical rationale for a child’s treatment will refuse to allow it, citing religious or cultural objections. In these cases of willful neglect, the parent may not directly wish the child harm. They may feel that a particular medical treatment represents an unforgiveable ethical violation, a spiritual blemish that outweighs any secular benefit. Jehovah’s Witnesses believe that God has explicitly forbidden blood transfusion, equating it with the Biblical injunction against eating blood. Christian Scientists do not accept medical care beyond “mechanical” interventions like dental or trauma care. In such cases, caregivers may feel that the child’s immortal soul will be jeopardized if the rules are broken. Religious objections to medical care may be seen in smaller sects within larger denominations as well. Some Christians feel that a therapeutic abortion, even in a case of incest, would be a sin, though most do not. In determining whether such behavior constitutes neglect, the “reasonable person” standard can fall short, as it is presumed that reasonable people may disagree over religious practice.

In other cases, willful neglect may be motivated by deeper issues of distrust against the medical establishment or, remarkably, science itself. With the advent of the internet, a parent’s natural fears may be buttressed by a host of blogs and websites that appear to confirm their worst misgivings. Vaccines, to choose a common example, despite their proven efficacy and safety, are declared on a variety of websites to be ineffective and harmful, causing mercury and aluminum poisoning, childhood autism, cancer and Sudden Infant Death Syndrome, among other morbidities (www.stopmandatoryvaccination.com, 2016). A parent’s misgivings may become more firmly defended after receiving this support, in a classic example of confirmation bias (Salmon et al. 2015; Omer et al. 2009). In an age of social media, a virtual culture can coalesce around an issue, as members share their views and support each other.

In determining whether or not refusal of medical care constitutes neglect, as in other cases of child maltreatment, the motivations of the caregiver are unimportant. When parent’s belief is such that it assures the child will suffer harm, intervention is necessary and permitted (Jenny 2007).

Consequences to the neglectful parent may vary. At this time, 34 states and the District of Columbia allow religious exemptions from child abuse laws. Interestingly, these codes were mandated by the 1974 Child Abuse Prevention and Treatment Act, and were reaffirmed, though in more neutral language, as the law was reaffirmed in 1983 and 1987. The American Academy of Pediatrics, the American Medical Association, and the National District Attorneys’ Association have called for universal repeal (AAP 2013).

When refusal of medical care on religious grounds is litigated, courts have consistently ruled in favor of protecting the child, commonly ruling that the child should be allowed to safely reach the age of majority before deciding to live by a particular ethos (Hickey and Lyckholm 2004). Famously, in a 1944 case, the US Supreme Court opined that “…parents may be free to become martyrs themselves. But it does not follow they are free to make martyrs of their children…” (SCOTUS 1944).

Although cultural variation is sometimes cited as a reason for a family’s neglectful behavior, researchers have found such variation to be small (Lansford et al. 2015). Indeed, the United Nations Convention on the Rights of the Child, assuring the right to health services, has been signed by all but two of the world’s nations (UN Convention on the Rights of the Child 1993). The physician’s focus must be on the prevention of harm, regardless of culture (Kolhatkar and Berkowitz 2014).

The Physician’s Role in Preventing Medical Neglect

While diagnosing medical neglect is an important obligation, it often occurs after harm has come to the child. Recognizing the multifactorial nature of these cases, practitioners might consider a more proactive approach, seeking out possible precursors of medical neglect and shoring up the family’s supports before a crisis occurs. Several such factors can be ameliorated by referral for services; others are under our more direct control. Some suggestions:

Screen for Risk Factors

As mentioned, neglect is far more often seen in the context of a child’s chronic illness, poverty, and family dysfunction or isolation. Pediatricians should be aware of the resources available in the community and know how to refer. Recognizing that these factors predispose a child to victimization is a first step.

Communicate Clearly, Assess Understanding

Clear, two-way communication is a key to avoiding medical neglect. This can be difficult to achieve in the typical structured pediatric visit, but the small amount of extra time is an investment that can pay dividends. When time is taken to understand the patient’s or caregiver’s concerns, these can be addressed more effectively. (Teutsch 2003) To that end, medical professionals should avoid use of medical jargon, take time to solicit the patient’s own agenda first, and avoid interruptions (Dyche and Swiderski 2005; Rhoades et al. 2001; Farrell and Kuruvilla 2008).

The techniques of Motivational Interviewing can be helpful in initiating this dialogue (Williams and Wright 2014). Practitioners of MI endorse a sequence of: 1) Collaboration, developing a partnership with the patient/caregiver that honors their perspective and their experiences; 2) Evocation, exploring the others’ feelings and goals; and 3) Autonomy, affirming the caregiver’s right to self-direction in decision-making (Miller and Rollnick 2013). In doing so, pediatricians recognize what is obvious: that short of state intervention, we can only provide care to our patients through modifying the actions of their caregivers. Though often called Primary Care Practitioners, we might better be termed Primary Care Partners. Mutual understanding is central to this relationship.

Regard all Patient Interactions as Cross-Cultural

The ecological model of maltreatment reminds us that each family is the product of myriad unique interactions. As medical professionals become more considerate of cultural influences (Rule et al. 2018), our definition of culture should extend beyond considerations of ethnicity, language, or religion. Considerable variation may be seen within groups that appear homogeneous at first glance, and the differences may prove to be important.

Providers are best advised to stay humble, and in doing so, not to automatically assume they know what is best for the patient. As in any cross-cultural exchange, it is important to leave preconceptions behind, to take nothing for granted. (Napoles-Springer et al. 2005) “Learn before you try to teach” is an appropriate maxim.

Follow Up

It is never wise to assume that caregivers will stick to a medical plan. Whenever possible, a follow up contact to assure adherence is advisable. This is especially true when the provider has identified any of the previously discussed “red flags” for possible non-adherence, such as poverty, chronic illness, family dysfunction, or low health literacy.

Though some pediatric providers feel uncomfortable with vaccine refusal and ask intransigent caregivers to leave their practice, the AAP recommends against this (Diekema 2005; Kroger et al. 2006). Continuing to follow the family and provide what care is allowed may increase their confidence and allow for further dialogue. Persistent gentle and respectful pressure may succeed where direct confrontation will not.

Conclusions

When a child’s safety or health is compromised by a caregiver’s failure to seek timely medical care or follow a medical care plan, or by a refusal of needed medical services, medical neglect belongs in the differential diagnosis. If the condition can be shown to be an imminent danger, the treatment effective and safe, and the caregiver informed and aware, the diagnosis is made. This can be a difficult determination, however, and should involve careful and open-minded scrutiny of each criterion.

Effective interventions may be made on a number of levels, in keeping with the realistic conceptualization of neglect as the result of multiple interacting factors. Predisposing conditions unique to the child, the parents, family, and community (including the medical providers) should be identified and targeted for interventions that support the child and caregivers in a manner consistent with ongoing safety.

Whether the neglect of needed medical care is unintentional or the result of a conscious decision may be of value in construing the community’s response, but it is of no significance to the practitioner in determining whether to refer to Protective Services. While some states still maintain laws exempting parents from prosecution when health care is neglected on religious grounds, this exemption refers only to the legal consequences, not the diagnosis or report.

The primary practitioner can be very effective in preventing medical neglect. Clear, two-way communication and understanding of medical necessities will minimize misunderstanding and can help the practitioner anticipate difficulties before they become critical, as will conscientious follow up of high risk patients. A humble, open approach that respects every patient’s unique determinants of health care will best serve both the patient and his health care provider.

Compliance with Ethical Standards

Conflict of Interest

The author denies any conflicts of interest.