Malnutrition and Medical Neglect

Abstract

Anomalies found during the assessment of nutrition in children are common in pediatric practice, yet few articles address the intersection between malnutrition and medical neglect. The diagnosis of medical neglect requires several components including a) harm, or risk of harm due to lack of recommended health care, b) recommended care provides benefit significantly greater than potential risk, c) caregiver understands the medical recommendations; and d) has access to the recommended care, but fails to utilize it. Through the application of this definition to cases of malnutrition, considerations for diagnosing medical neglect when presented with malnutrition are reviewed. Cases include children with special healthcare needs, children exposed to selective diets, previously well children with severe malnutrition, and treatment-resistant failure to thrive. Obesity is a state of malnutrition, which may also involve neglect; in this instance, the “neglect” involves failure to supervise nutritional intake necessary for optimal functioning. Because many cases involve interactions with medical providers, the subsequent failure to follow medical advice regarding obesity management may also be considered medical neglect. This article reviews the relationship between medical neglect, nutritional deprivation, and over-nutrition to explore when a diagnosis of medical neglect may be applicable.

The assessment of a child’s nutritional status, growth, and development are cornerstones of effective pediatric care. However, the relationship between abnormal nutrition and medical neglect is infrequently discussed in the literature. It is the obligation of caregiver(s) to provide adequate nutrition to children. From birth throughout childhood, caregivers work with health professionals to understand the goals and boundaries of adequate nutrition. Anomalies of nutrition and growth are commonly addressed in pediatric practice and occur for a myriad of reasons. When does treatment failure and persistence of these abnormalities constitute nutritional neglect? When do they constitute medical neglect?

Malnutrition due to neglect is often characterized as failure to thrive in younger children where failure to provide adequate nutrition and nurturing results in the risk of poor health outcomes (Asano et al. 2015; Fellitti et al. 1998; Kerr et al. 2000; Lissau and Sørensen 1994; Mackner et al. 1997; Perrin et al. 2003; Schwarzenberg and Georgieff 2018; Zmora et al. 1979). Nutritional neglect may be a more appropriate term when addressing whether neglect contributes to a child’s malnutrition. This allows for all types of nutrition to be included in the discussion – both undernutrition and obesity; and expands the discussion to allow for analysis of the impact on health, development and behavior across the age span.

The diagnosis of medical neglect requires several components including: a) the harm, or risk of harm, to a child due to lack of recommended health care, b) recommended care which provides benefit significantly greater than the potential risk, c) a caregiver who understands the medical recommendations; and d) has access to the recommended care, but fails to utilize it (Jenny 2007). Medical neglect should be addressed as part of nutritional neglect when medical recommendations for nutritional care are not followed and result in abnormal nutrition or other sequelae, or when medical treatment for a chronic illness is not followed and results in nutritional deficits.

For those in pediatric practice, assessment and referral for neglect can be challenging. When a caregiver does not meet the needs of a child, the presentation of nutritional and medical neglect exists along a spectrum of contributors. These range from parent educational needs to poor coping with stressors to factitious health beliefs/parental disagreement to withholding of food or treatment. The duty of the clinician in meeting the best interests of the child is to determine what level of omission has occurred and what intervention is appropriate. This may include the possibility of filing a child abuse report for assistance, neglect or maltreatment. On the milder end of the spectrum, circumstances may involve an omission in care by a family in need of education or resources who responds positively to this intervention. This would not be considered neglect – as the definition requires that caregivers have knowledge of and access to the needed care. For families who do not respond to treatment, resources or education, this may be consistent with neglect.

A referral to social services is beneficial in either situation because: a) in some areas local social services provide programs that serve families in need (no neglect: family needs education/resources); or b) there continues to be an omission in the child’s care after resources and education are provided (neglect). While legal action and separation are possible outcomes when such a referral is made (Murtagh and Ludwig 2011), these referrals may also become an access point for vital resources for families and may not result in separation or prosecution. Refraining from filing neglect in order to avoid legal action may deprive the child and family of those resources.

On the more severe end of the spectrum involving intentional withholding of food or treatment, the criteria of medical and nutritional neglect are more readily recognized. Severe malnutrition poses direct, possibly life-threatening, harm to the child (WHO/Severe Acute Malnturition 2019). Applying the principal of beneficence, providing adequate nutrition drastically outweighs the potential morbidity of feeding, and in this case, starvation is not due to lack of access; it is intentional. The loss of parental autonomy is not the intention of the referral to social services. Improvement of the child’s nutrition is the goal, and the benefits of nutrition outweigh the risk of lost autonomy. The discussion becomes significantly more challenging when addressing less acute or medically complex cases, such as obesity, normal-weight malnutrition, or undernutrition in patients with chronic illness. Some of the harms associated with underweight, obesity, and nutritional deprivation with normal weight are shown in Table 1 (Hobbs and Hanks 1996; Lang 2012; Murtagh and Ludwig 2011; Rasmussen et al. 2001; Schwarzenberg and Georgieff 2018; Schorr and Miller 2016; Shinwell and Gorodischer1982; WHO/Severe Acute Malnutrition 2019; Zmora et al. 1979).

Table 1.

Impact of nutritional neglect

	Underweight	Obesity	Any weight
Cognitive impairment	x	x	x
Delayed or diminished speech & language skills	x
Depression, anxiety	x	x	x
Victim of bullying	x	x
Diabetes mellitus type 2		x
Metabolic syndrome		x
Non-alcoholic fatty liver disease		x
Sleep apnea		x
Cardiac disease	x	x
Increase risk of infections	x	x	x
Endocrine dysfunction	x	x	x
Stunting (long term)	x

Impact of Undernutrition and Neglect

The most described nutritional abnormalities associated with neglect are due to deprivation of nutrition, which has been classified as failure to thrive (FTT) during early childhood, protein-calorie malnutrition in older children and may include micronutrient deficiencies in both age groups (Daniel et al. 2008; Hobbs and Hanks 1996; Rasmussen et al. 2001; Schwarzenberg and Georgieff 2018; Schorr and Miller 2016; Shinwell 1982; WHO/Acute Severe Malnutrition 2019; Zmora et al. 1979). Table 2 illustrates presentations of children with nutritional deficiencies due to neglect – while addressing caregiver responsiveness to intervention and some of the contributors to neglect. Some caregivers, who were initially unable to provided adequate nutrition, will respond to educational intervention and ongoing monitoring resulting in the improvement of malnutrition. Others, who often have family or personal stressors, may require more intensive supports; and may respond only with these supports. Some caregivers disagree with health professionals and have idiosyncratic or factitious beliefs about nutrition and health. They have a guarded prognosis for response to education and support, unless the disagreement can be resolved. Finally, there are some who intentionally withhold food or healthcare/medicines from children. In this last category; some have argued that withholding may be considered a form of physical abuse – as it is a deliberate act (Golden et al. 2003). These authors argue that while neglect is an “omission”, deliberate food withholding is a “commission”. Though uncommon, this is a dangerous form of nutritional deprivation and can result in death. There is limited information in the literature related to deliberate withholding of health care or medicine; yet one such description can be found in case reports presented by Knox et al. (2016) in which children have poly-victimization including withholding of food, health care, isolation and physical torture.

Table 2.

Presentations of nutritional deficiency and neglect

1. Children with mild nutritional abnormality: Caregiver responsive to Intervention/Education. ➔ Caregiver fails to follow Intervention/Education – nutritional deficiency worsens/fails to improve.

2. Previously Well Child – Serious or Chronic Nutritional Deficiency: Caregiver responsive to Intervention/Education. ➔ Caregiver fails to follow Intervention/Education or fails to recognize and seek medical intervention – nutritional deficiency worsens or fails to improve.

3. Children with medical complexity and/or feeding difficulty: Caregiver responsive to Intervention/Education ➔ Caregiver fails to follow Intervention/Education – nutritional deficiency worsens or fails to improve.

4. Children exposed to selective diets. Caregiver responsive to Intervention/Education ➔Caregiver fails to follow Intervention/Education - – nutritional deficiency worsens or fails to improve.

5. Food Withholding – Deliberate

Malnutrition due to nutritional deprivation leads to a myriad of negative health consequences including impact on neurobehavioral development, and risk for an array of health conditions as well as death (Felitti et al. 1998; Schwarzenberg and Georgieff 2018; WHO/Acute Severe Malnutrition 2019). The American Academy of Pediatrics Policy Statement: “Advocacy for Improving Nutrition in the First 1000 days to Support Childhood Development and Adult Health”, noted that “Failure to provide key nutrients during this critical period of brain development may result in lifelong deficits in brain function despite subsequent nutrient repletion” (Schwarzenberg and Georgieff 2018, p.1). Several areas are impacted by poor nutrition during this critical time period including myelination, as well as development of the hippocampus and the pre-frontal cortex – the area responsible for planning, attention, inhibition, and multitasking (Schwarzenberg and Georgieff 2018).

Throughout childhood, malnutrition predisposes these children to health complications including osteopenia, anemia, growth delay, and infection (Walson and Berkley 2018). During puberty, undernutrition may disrupt hormonal pathways leading to complications such as amenorrhea (Schorr and Miller 2016; De Souza and Mallinson 2014). Children with severe malnutrition can experience fatal complications. For example, in a case report from 2015, a 15-year-old victim of nutritional neglect experienced what appeared to be pseudo-thrombotic thrombocytopenic purpura as a result of severe vitamin B-12 deficiency (Asano et al. 2015). There are many documented cases of children and young adults who die from complications of malnutrition associated with eating disorders; which may impact cardiac function and electrolyte balance. During infancy, deaths from malnutrition and dehydration are well described. Based upon WHO data (WHO/Acute Severe Malnutrition 2019) case fatality rates for untreated severe, acute malnutrition ranges from 30 to 50%.

It is essential to account for the additive effects of malnutrition and neglect when addressing outcomes. In comparing the outcomes of children who had no FTT (malnutrition) or neglect; malnutrition alone, neglect alone or malnutrition combined with neglect; Mackner et al. (1997), noted that the cognitive performance of the group of children with both neglect and FTT (malnutrition) was significantly below that of children who were in the FTT (malnutrition) only, neglect only or no FTT – no Neglect groups. Others have noted no difference in IQ between children with malnutrition and those without (Rudolf and Logan 2005). However, some have focused on behavioral challenges or adaptive function. Kerr et al. (2000), evaluated child behaviors using the Achenbach Child Behavior Checklist in children who experienced both maltreatment and FTT and in those children with FTT alone. There was no increase in reported behavioral problems at school; unless both maltreatment and FTT were present.

Undernutrition in Children with Special Healthcare Needs

Determining whether nutritional abnormalities represent medical neglect in children with special healthcare needs is complicated by the unique feeding and nutritional challenges many in this population already face. This is especially apparent in children with neurologic impairment, who may experience significant feeding difficulties due to dysphagia, gastroesophageal reflux, delayed gastric emptying, constipation, immobility or the adverse effects of medications (Penagini et al. 2015; Sullivan 2008). As a result, children with neurologic impairment frequently experience caloric and micronutrient deficiency, and those with nutritional impairment experience more severe disability (Penagini et al. 2015). Given the potential for harm, when should a case of persistent nutritional deprivation in a child with medical complexity and feeding difficulties be considered medical neglect?

A related question was addressed to a panel of 25 individuals, with an average of 16.5 years of experience treating undernutrition in children with Cerebral Palsy (Worley et al. 2007). The panel intended to discuss the decision-making process for beginning enteral, as opposed to oral, feeds. The group consisted of physicians from pediatric specialties including general practice, surgery, gastroenterology, neurology, and psychiatry, as well as dieticians, social workers, physical and occupational therapists. Discussions from this panel produced the following statement: “If parents have devoted much ineffectual effort to feeding a severely undernourished child with Cerebral Palsy, then a majority of participants would be reluctant to report them to civil authorities for child neglect, as long as the intent of parents in persisting to feed their child orally was not to shorten their child’s life (Worley et al. 2007, pp. 79-80). In a separate statement the group noted “A harder issue is whether ineffectual feeding over a prolonged period by highly dedicated parents constitutes ‘child neglect’. A majority of participants thought not (Worley et al. 2007, p. 80).” Reasons for not reporting included the prospect of damaging relationships and a perceived lack of action by authorities after reporting (Worley et al. 2007).

This discussion raises questions that are often within the providence of palliative care. A key distinguishing feature may have much to do with prognosis and the parents’ and team’s goals of care. Additionally, other clinical features may be in play; such as risk for aspiration pneumonia due to dysphagia. If the child’s parent continues to orally feed a child who has documented aspiration on feeding evaluation, the impact of failure to follow recommended enteral feeding is aspiration pneumonia and risk of death and malnutrition. In this situation; it is critical to determine the parents’ understanding of their child’s condition; rationale for their decision as well as their intent related to the child’s prognosis.

While the authors of this manuscript have reservations related to not reporting the children described above, the discussion highlights the challenges faced in diagnosing neglect, and the importance of continued dialogue on what constitutes medical neglect. The withholding of a basic life necessity, which may constitute neglect, is not equivalent to intending to harm a child in all cases. Conversely, the intent to harm is not a prerequisite to the diagnosis of neglect. Should the child experience significant harm, as is the case in severe malnutrition; and accessible, low-risk therapies, such as enteral feeding, are deferred, then a diagnosis of medical neglect should be considered.

The case of a medically complex 14-year old female (from Spike and Tarzian 2016), referred to as ‘M’ for blinding purposes, illustrates these points. M. had a past medical history of mitochondrial disorder, developmental delay, cerebral palsy, central sleep apnea, failure to thrive, and scoliosis. She was evaluated for intolerance of gastrostomy-tube (g-tube) feeds and weight loss, which had been ongoing for several months. Eventually, the workup demonstrated significantly delayed gastric emptying. After failing medical management, a gastrojejunostomy tube was recommended. Concerned about the potential harm of anesthesia and prolonging M’s suffering, the decision was made by the team and parents to try 1 month of erythromycin to improve gut motility with continued g-tube feeds. After 3 weeks she was unable to tolerate feeds and had increased leakage and skin breakdown around her g-tube site. M’s primary caregiver requested feeds be stopped, that she be put into medical coma, and allowed to die. Her neurologist and gastroenterologist felt symptoms were not severe enough to warrant ending her life and recommended that she should be evaluated for GJ tube placement. There was a question as to whether CPS should be contacted. In this case all participants are attempting to act in M’s best interest, and no one is trying to bring her harm. However, a treatment to resolve her g-tube leakage, skin breakdown, FTT, and inability to tolerate feeds was being deferred without an appropriate alternate option. Her provider team did not believe medical coma and death were appropriate. Should the benefits of this procedure outweigh the risks of anesthesia to place the GJ tube, and the caregivers continue to refuse this treatment, then this may constitute a case of medical neglect and a report should be made to CPS.

In this example, there are a few key points to consider. The intent to harm is not a requirement to diagnose neglect. Children with medical complexity are at risk for medical neglect and nutritional deficiencies given frequent gastrointestinal comorbidities, medications and difficult feeding regimens. In this case, if parents and the team disagree related to the child’s prognosis or the risk versus benefit of allowing a G-J tube for nutrition and hydration, and the parent is asking the team to take active steps to shorten the child’s life, then medical neglect should be considered. This case involves difficult discussions related to prognosis, end of life decisions, and quality of life. The outcome will, in part, be dependent upon the extent to which the treatment team can articulate the benefit versus risk of the GJ tube; as well as the child’s prognosis with and without this treatment.

Within the group of medically complex children; another common intersection between medical neglect and nutrition involves the failure of caregivers to follow medical treatment for a primary condition such as diabetes or cystic fibrosis; causing malnutrition. In children with diabetes, failure to follow dietary and medicine regimens can result in dehydration, acidosis and hyperglycemia (Benoit et al. 2018). Children with cystic fibrosis require pancreatic enzyme replacement. Failure to provide this can result in steatorrhea and malnutrition. These examples are often categorized as medical neglect with a description of the impact on health and nutrition.

Children Exposed to Selective Diets

Parents may choose to place their children on selective diets for many reasons including religion, health beliefs, and familial habits. If not carefully managed, restriction from certain foods can result in caloric or micronutrient deficiencies and poor health outcomes. A case series from a vegan religious community in 1982, for example, showed evidence of growth delays in 47 infants, as well as “protein-calorie malnutrition, iron- and vitamin B12-deficient anemia, rickets, zinc deficiency, and multiple recurrent infections” in 25 children (Shinwell and Gorodischer 1982). The number and severity of medical issues in this case series demonstrates the risk of specialized diets, and the importance of close nutritional monitoring in similar patient populations.

In another vegan religious community, 4 infants were identified in 1979 with profound nutritional deficiencies including severe rickets, osteoporosis, and vitamin B-12 deficiency (Zmora et al. 1979). After discharge from hospitalization, the community worked with diet modifications that stayed within the limits of their religious beliefs; however, they refused to give vitamin B-12 regularly (Zmora et al. 1979). Vitamin B-12 deficiency can cause a wide range of symptomology from developmental delay and seizures, to FTT and anemia, to depression, and poor school performance (Rasmussen et al. 2001). Furthermore, neurologic damage from B-12 deficiency may be irreversible (Rasmussen et al. 2001). The refusal to regularly administer vitamin B-12 to children with diets that previously demonstrated deficiency places these children directly at risk for medical complications. Treatment with vitamin B-12 is efficacious but may cause hypokalemia in patients with severe anemia (Rasmussen et al. 2001). However, with proper monitoring, treatment poses minimal morbidity. Assuming the caregivers were competent decision makers and vitamin B-12 was available, this case demonstrates how exposure to an unusual diet and refusal to modify that for the child’s safety may constitute medical neglect.

An important point in the above case is that the patients presented with extreme malnutrition initially, and caregivers refused to modify a diet that previously caused deficiencies, which placed their children at a significant risk for harm. Similar situations may arise in more commonly seen clinical scenarios; such as the iron deficient infant whose selective diet does not include iron supplementation. Exposure to selective diets can lead to significant harm (Berglund et al. 2013). Failure to ameliorate nutritional deficiencies either by modification of diet or supplementation may constitute medical neglect. Both prior examples fall within the spectrum of parental disagreement with health providers. If this disagreement is not solved, then the likelihood for ongoing risk of nutritional neglect is high.

The Previously Well Child with Severe Nutritional Deficiency

At each well child visit, parents are provided information and guidance on how best to support their child’s development, including healthy eating recommendations. Nutritional education is a prominent feature of primary care visits during the first years of life, when breast or formula feeding instruction and introduction of new foods are discussed. If caregivers find themselves unable to provide proper nutrition, and then delay seeking care, despite prior education, are they then perpetrators of medical neglect?

The case of a child referred to as ‘M’ for blinding purposes demonstrates this thought process. M was a 5-week-old male admitted to the Pediatric Intensive Care Unit (PICU) for FTT, severe dehydration, hypoglycemia, and thrush. M was born at term without complications. During week 4 of life, M and his mother visited M’s aunt twice. In the first visit M’s aunt noted the baby to be “pale, chilly, and skinny.” During the second visit, M’s aunt again expressed concern and advised that the family seek care. That evening, M presented to the local emergency department and was subsequently transferred to the PICU.

M weighed 7lbs 9ozs at birth. His mother was visited by a lactation consultant at 1 week of life and a midwife at 2 weeks of life, when he reportedly weighted 7 lb. 3ozs. He was not seen for a 2 week well child exam. On admission, at 5 weeks of life, he weighed 6lbs 5.2ozs, and by hospital day 9, he had gained 15.9ozs. From birth through 2 weeks M was exclusively breast fed, for approximately 15 min 5 times/day. At 2 weeks of life, M began feeding 15 min 2–3 times/day with an additional 8 oz of formula a day. Of note, his mother did attempt to pump from both breasts upon arrival to the hospital, resulting in less than 1 oz of breast milk from both breasts. M’s mother reported, 4–6 wet diapers/day in the week prior to admission, and no recent bowel movements. She reported 1 wet diaper on the day of admission. M lived at home with his mother and father, who were both providing care. The inability to pump more than 1 oz. of breastmilk paired with 8ozs/day of formula suggests that M received far below the recommended nutrition and hydration for his age. Despite post-partum education, home lactation consultation, and home visitation from a midwife, he progressed to a severe degree of malnutrition due to inadequate feeding. Applying the referenced definition of medical neglect, M was exposed to harm, the caregivers had access to nutritional education, formula, and breastmilk, and the impact of this was severe malnutrition and dehydration. While the people giving the recommendations were not physicians, they were health professionals, who did provide education and follow-up. M’s parents failed to recognize the seriousness of his condition; and without the intervention of his aunt; he may have succumbed. The question in this situation is whether M’s caregivers understood the feeding recommendations. M’s caregivers received 2 home visits and routine discharge education. Would it be consistent with neglect if they did not understand the instructions?

Physicians typically address most cases of FTT by working with parents to correct growth problems before they escalate – through nutritional education, referral for resources and follow up. The failure of M’s parents to recognize and appropriately respond to his severe malnutrition after education from other health providers, as well as missing the 2-week well checkup, would be considered medical neglect if they were able to articulate the instructions, and had access to formula. However, additional assessment is warranted in these cases including: a) evaluation of parent decisional capacity to ascertain whether there is a knowledge/skills deficit; b) review of other stressors, which may interfere with decision making and c) determination of parental agreement/disagreement with medical recommendations (Tran et al. 2008). This assessment informs intervention and safety recommendations for the child and family. Decisional capacity assessment involves a) a person’s understanding of the health issue, b) ability to communicate about the health issue, c) the ability to problem solve how to follow health advice, and d) the level of agreement with diagnosis and recommendations. There are several brief assessment methods that can be utilized to assess a caregiver’s decisional capacity and health literacy (Appelbaum 2007; Kumar et al. 2010; Tran et al. 2008). When parents have poor decisional capacity due to cognitive or communication deficits, there remains a risk for omission in care, if these are not remediated. In this situation; the family will need additional supports from the health system and other family members. How should we respond if these parents refuse this help and continue to under feed this infant? At this point, medical neglect would be the appropriate ongoing diagnosis and further action from CPS is warranted.

Treatment Resistant Failure to Thrive

There are multiple reviews written to help health professionals with the approach to the assessment and management of failure to thrive (Daniel et al. 2008; Goh et al. 2016; Rabago et al. 2015; Hobbs and Hanks 1996; Black et al. 1995, 2007). While several definitions exist based upon abnormal growth parameters or growth rate; failure to thrive is most often characterized as malnutrition associated with a discussion related to the presence or absence of deprivation or neglect during infancy or early childhood. (Zenel 1997). Failure to thrive was historically classified as organic or non-organic in nature, to distinguish those children with an underlying medical contributor from those where neglect was the primary mediator of malnutrition. This classification has been abandoned; as it does not address contributing behavioral, developmental issues or children with mixed contributors to their nutritional status. In general, the use of the term failure to thrive has applied to infants and young children, whereas malnutrition or nutritional neglect have been used for older children (Ross 2017).

There may be greater clarity in the diagnostic process; if the nutritional issue is framed as malnutrition and nutritional neglect in children of all ages, rather than failure to thrive in some and nutritional neglect in others. If we approach growth failure first - from the standpoint of determining the presence/absence of malnutrition, then we can determine the presence or absence of contributors including medical, developmental and neglect as seen in Fig. 1. Since nutritional neglect may occur at any age; the next step involves evaluating the spectrum of contributors to neglect as previously reviewed in Table 2. As noted previously, this approach also allows for obesity and normal weight malnutrition to be considered within the umbrella of nutritional neglect across the life span.

Fig. 1.

Approach to nutritional neglect

In some cases, it may be appropriate to consider that treatment refractory nutritional neglect or FTT is consistent with medical neglect. For example, in the case of a 2-month old, she was referred to Child Protection Team for failure to thrive. Aside from having poor weight gain since birth and being underweight for length on presentation; her examination was normal. She was hospitalized, a careful medical and dietary history completed, and screening laboratory studies were done. According to the history, her caregiver reported a normal pregnancy and newborn history, and the infant was reported to be ingesting an age appropriate amount of formula. The infant newborn screen was found to be normal. There was no report of food insecurity (adequate available formula) and infant was reported to have no vomiting, diarrhea or illness. In the hospital, she was fed the home regimen of the same formula on the same schedule reported by her caregiver. She had vomiting with every feeding and was noted to arch and fuss during and after feeding. She was evaluated and assessed to have Gastroesophageal Reflux disease. She demonstrated rapid (catch-up) growth, once medication was started, and her feeding schedule was adjusted to smaller more frequent feedings. She was sent home in one week with clear instructions for content and schedule of feedings as well as positioning and medication use.

When seen at 3 months of age by her primary care physician, she had acceptable weight gain. At 3 ½ months of age she was reported to child protective services again; and it was found that she had lost weight (from 5.4 kg to 4.4 kg – about a 19% decrease in 2 weeks). She was dehydrated and pale.

The caregiver denied vomiting, diarrhea or illness. Caregiver history of feeding indicated that if taking what was reported, infant should have adequate growth. (Caloric intake was appropriate for age and similar to what was given the first time she was hospitalized.). Once again, after rehydration, she was fed a regular diet consistent with what was reported at home and her medication was administered. She had substantial catch up growth within 6 days. She was placed in foster care and continued to gain weight well. It was subsequently determined that her parents had never obtained the medication nor had they attended the WIC appointment, though the infant was eligible, and they had completed paperwork from their primary care provider. Further investigation by CPS noted that there was a long history of family violence between both parents and both parents tested positive for THC and opiates. The diagnosis in this child is consistent with nutritional and medical neglect. Malnutrition (nutritional neglect) is based on failure to feed the infant enough formula, resulting in poor growth. Additionally, this infant’s course is characterized by failure of the caregiver to provide accurate history as to dietary intake at home prior to both admissions. If history were accurate, and the amounts reported were being given, then the infant would not have gained weight when given the same amount at the hospital. Caregivers also failed to recognize that the baby was vomiting and arching with feedings prior to the first admission. By the second hospital admission, the caregivers did not consistently implement the health team’s recommendations from the first hospitalization, including failure of medication administration and the missed WIC appointment. This is consistent with medical neglect.

In addition to risk of developmental delays, this infant was also noted to be dehydrated on her second admission, which placed her at physical risk of death if left untreated. Ongoing exposure to malnutrition and neglect increases the risk for physical, developmental and behavioral disorders; and the risk is additive (Mackner et al. 1997). Hence, an alternative environment provided nutritional rescue and safety. Note also that the health team asked questions related to food insecurity or lack of available formula, which is essential information to be obtained during the assessment of undernutrition in children. Other information that assisted the team in determining long term intervention for this family included identification of stressors involving family violence and substance use in both caregivers, which contributed to the neglect of this infant. On the spectrum of nutritional neglect, this represents high risk behavior; which, left untreated/unchanged will continue to place this infant at risk. Case planning should include services to address violence and substance use if re-unification is to be considered.

Undernutrition and Medical Neglect: Summary

Nutritional and medical neglect associated with undernutrition or nutritional deficiencies may present in children of all ages; and the reasons for neglect may be viewed as a spectrum from the need for simple education to family stressors to parental disagreement to deliberate withholding of food or medical care. Some authors have argued that intentional food withholding is a deliberate act; and should be viewed as distinct from neglect. Situations in which nutrition and medical neglect intersect involve: children with special needs where nutritional and medical advice are not followed, use of selective diets against medical advice, failure to follow nutritional advice from a health professional in an otherwise healthy child, and in the most severe cases, deliberate withholding of food or health care. Assessment of these features helps to inform intervention and safety planning for these children and families; and the approach is summarized in Fig. 2.

Fig. 2.

The spectrum of malnutrition-neglect: from food insecurity to withholding and the spectrum of malnutrition-neglect: path to intervention

Obesity as a Form of Medical Neglect

Distinct from insufficient nutrition and failure to thrive due to neglect, another manifestation of nutritional and medical neglect may present with the symptom of obesity (Lang 2012; Murtagh and Ludwig 2011). In this instance, the “neglect” is the failure to properly supervise the caloric balance necessary for optimal functioning, the failure to follow medical advice related to obesity treatment or both. The concept becomes more salient the more extreme the weight deviation and/or with the presence of co-morbid the medical conditions. While the concept that obesity is neglect may be difficult for some to understand in that it is not a deprivation syndrome, it is neglect due to a failure to adequately supervise. Because many instances involve interactions with medical providers, the subsequent failure to follow medical treatment advice to ameliorate the problem can also be considered medical neglect.

Harms of Obesity

Extreme obesity can lead to additional medical problems such as Type II diabetes, skin ulceration, lung and heart problems, kidney problems, and more (Lang 2012; Varness et al. 2009; Whitlock 2005). While children with extreme obesity are not admitted to the hospital for that reason alone (i.e. insurance does not pay), with a co-morbid condition they might be.

Parental neglect has long been recognized as possibly leading to an increased risk of obesity in young adulthood (Lissau and Sørensen 1994). A sample of 9–10 year-olds from 1974 in Copenhagen was assessed for family structure and child hygiene, and then 756 (86%) were followed up 10 years later. Parental neglect had a much greater risk for subsequent adult obesity (odds ratio = 9.8) than body mass index during childhood, sex, or social background.

In the late 1980s, Dr. Vincent Fellitti worked at Kaiser Permanente in San Diego and ran an adult obesity clinic. He noticed an association between obesity in women and a history of sexual abuse as a child. This led to the Adverse Childhood Experiences (ACE) study – a collaboration with the Centers for Disease Control and Prevention and Kaiser Permanente. Nearly 18,000 adult participants (average age = 57 years) were asked detailed questions about their childhood experiences, and this was linked to their health history and current status (Felitti et al. 1998). Using binary coding (yes/no) for 10 questions about possible adverse childhood experiences, they derived the ACE score – ranging from 0 to 10. The ACE score was shown to be linked to numerous adult disorders and has been replicated in many places in the world. Of interest regarding obesity, an ACE score of 4 or more yielded an adjusted odds ratio of 1.6 for “severe obesity” defined as a BMI greater than 35. Being an adult with obesity (BMI greater than 30) is 50% more likely if a child more than 13 years of age or older has a BMI that meets or exceeds the 95th percentile for age and gender (Whitlock 2005). Childhood obesity is a warning sign of likely adult obesity and the complications this entails. It indicates the need for prevention. What is less clear is what interventions might work in the primary care setting to prevent this.

In a large meta-analysis of 41 studies exploring child maltreatment and obesity, there was an increased risk of developing obesity over the life course if childhood maltreatment was present (odds ratio = 1.36) (Danese and Tan 2014). They noted that obesity affects 17% of children in the US and 36% of adults. Because obesity is a global health problem associated with substantial morbidity, impairment, and economic burden; the authors concluded that prevention of maltreatment is necessary to prevent obesity.

Obesity itself is therefore associated with child abuse or neglect, particularly neglect and sexual abuse. Intervention, once adult obesity has occurred, is difficult. Thus, prevention of child abuse/neglect and prevention of child obesity (sometimes a consequence of other forms of abuse) is medically necessary.

Obesity as Neglect

Multiple case series have been published describing children with obesity and neglect. Christoffel and Forsyth (1989) reported on 12 children with severe obesity defined as more than 150% of ideal body weight for height. The families were shown to have psychosocial dysfunction, like children with psychosocial failure to thrive including hostility and poor follow up. They recommended use of the phrase “severe obesity of psychosocial origin,” and suggested it was the mirror image of growth failure (p. 255).

Varness and colleagues (Varness et al. 2009) proposed removal from the home was justified when 1) a high likelihood of serious harm; 2) a reasonable likelihood that coercive state intervention will result in effective treatment; and 3) the absence of alternative options for addressing the problem. They focused on obesity, versus comorbid complications as determinants of serious imminent harm. They postulated that including all 3 criteria; including exhausting alternative options would yield a very limited number of cases. They also endorsed removal from the home to protect the child from “irreversible harm”. Like many authors, it is not clear if they would apply the same standard of harm or immediacy as in cases of failure to thrive.

Similar concerns are described when obesity and comorbid conditions necessitated the removal of children from their parents in Australia (Alexander et al. 2009), England and Ireland (Viner et al. 2010). Both articles note that obesity is not the sole concern, rather the overall health of the child – with comorbidities is the chief issue. This was also echoed by Hayes and Sicafuse (2010) who also encouraged the judicial system to consider the therapeutic needs of the child – including possible removal. Further elaboration is needed related to the role of the court to order services and monitor a case plan. Short of removal, the juvenile court system has the power to compel parents to attempt to achieve case plan compliance. This judicial oversight can provide extra incentives for the parents to recognize the harm to their child, but also may allow the financial means for services such as transportation and medical care.

In one of several law reviews on the topic, Arani (2002) specifically addressed the intersection between obesity and medical neglect and explored the spectrum of severity, imminent danger, and if court intervention may be more likely with obesity-related medical complications. In a New Mexico case, the parents failed to follow a physician’s instructions to treat their daughter’s obesity, and at 3 years of age, the child weighed 131 pounds, but when hospitalized, she lost weight. She also had breathing problems related to her severe obesity, and this was considered “life threatening” by the family physician. Thus, child protective services, and the court intervened by placing her in foster care. Court intervention was considered appropriate if the intervention was lifesaving, life-prolonging, or quality of life enhancing – depending on the jurisdiction and case specifics. The definition of neglect is viewed as an omission; and as such, it is expected that court interventions would be rare in cases of obesity. It is more difficult to define the omission in care for obesity, which in these cases involves inadequate supervision and/or failure to follow medical advice, rather than failure to provide adequate nutrition. In a similar review, Patel (2005) cited several examples of court intervention for morbidly obese children. As noted in the previous review, the degree to which the child’s health was imminently threatened potentially increased the likelihood of legal intervention. This is consistent with the court’s approach to neglect as a whole. Because neglect can be a continuous process versus a discrete episode such as a broken bone from physical abuse, the immediacy of the threat may not be readily evident, even if the long-term outcome can be devastating.

Both law reviews (Arani 2002 and Patel 2005) raised the concern that genetic conditions are viewed as a possible mitigating factor in decisions related to determination of neglect. However, when working with individuals with Prader-Willi Syndrome (a genetic cause for morbid obesity), it is within the parents’ abilities to manage the child’s weight, even when extreme steps like substantial calorie restriction, locking the refrigerator and cupboards, and guarding other food sources are necessary (Greenswag and Alexander 1990). Child protection interventions are rarely necessary when parents are compliant with Prader-Willi Syndrome team recommendations. The parents’ ability to modify the weight of an older child, who may have their own ways to access food sources, may complicate the degree of responsibility assigned to them. While rare genetic conditions make weight loss more difficult, like other medical situations, the basic underlying physiology of the child is not an excuse for lack of parental supervision or follow through with medical recommendations.

Concerns about government responsibility to protect children versus parental rights have surfaced in other countries related to neglect and obesity; highlighting the role of the system on the outcome of these cases (Armstrong 2007). In 2007, the British Medical Association rejected the determination of neglect by parents of obese children (Cole and Kmietowicz 2007). Some cited the loss of the doctor patient relationship as a reason not to consider obesity as neglect. It was not clear in this case whether extreme obesity with medical consequences was adequately considered.

Noting prior cases in California, Iowa, Indiana, New Mexico, Pennsylvania, and Texas, (Murtagh 2007; Murtagh and Ludwig 2011) described a New York case in which a morbidly obese child was removed from her parents. The Family Court determined “serious harm” to include the chronic condition of obesity. The girl was morbidly obese with additional medical conditions of gallstones, fatty liver disease, sleep apnea, intermittent high blood pressure, and insulin resistance. As attempted interventions over years failed, the issue became how to maintain a healthy weight in this child if she was reunited with her parents. The author suggested a standard for removal if the morbid obesity posed imminent threat of death or serious harm.

While there is a perception that obesity cannot be caused by neglect, the approach to obesity due to neglect should resemble that of other maltreatments including medical neglect. This approach involves determination of contributors or risk factors. For example, the age of the child matters in how a caregiver meets the nutritional needs of that child. Using the concepts of care neglect (e.g. poor hygiene, exposure to household environmental hazards, and inadequate health care) and supervisory neglect (parental lack of awareness of child activities, personal preferences and the child’s engagement in risky or deviant behaviors), Knutson and colleagues (Knutson et al. 2010) enrolled 571 socially disadvantaged children with ages between 3 years, 7 months to 9 years, 6 months, including interviews and observation in the home setting. They found that 15% of the children were overweight and 16.3% were obese. Care neglect was related to obesity for the younger children; whereas supervisory neglect was related to obesity for the older children. The way in which a child is neglected thereby differs by age, with obesity as the presenting sign, warranting consideration of age during intervention planning.

Zivkovic et al. (2010) present a novel argument that these cases represent “child politics” and tend to blame the mother disproportionately for the negative outcomes of severe childhood obesity, thereby criminalizing them rather than holding both parents responsible. While most cases are not criminal, they may be serious enough to reach juvenile court – where the best interests of the child are the prime directive. Though one outcome of juvenile proceedings may be removal; this court also functions within the context of the family and may help them. Along these lines, Harper (2014) provides an excellent review of both under and overweight considerations with respect to medical neglect and emphasizes the need for prevention before child maltreatment has occurred.

Conclusion

Medical neglect may reflect some degree of chaos in the family with the symptom of dysfunction manifesting as a problem with growth and nutrition. Other forms of neglect should also be simultaneously evaluated and addressed. Mere correction of the nutritional deficiency (e.g. weight loss for the obese child; correction of nutrient deficiencies in the child with an unusual and inadequate diet; or correction of FTT) only treats the immediate symptom of neglect but may not cure the underlying causes. As with all forms of neglect, nutritional and medical neglect assessment requires assessment of risk factors, caregiver characteristics and barriers to meeting the child’s needs. These can be viewed along a spectrum from educational and resource needs to deliberate or intentional neglect. The caregivers should be assessed for decisional capacity, mental health problems, intimate partner violence, substance abuse, personal history of child maltreatment, transportation or other restrictions, and any other factor that might contribute to the child’s medical condition. Effective intervention flows from a complete assessment of the child and family. As the family is treated, along with the child, the prognosis improves for long-term health and wellbeing.

Compliance with Ethical Standards

Conflict of Interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.