medical neglect and pediatric obesity: insights …...interprofessional pediatric obesity treatment...

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Children's Health Care

ISSN: 0273-9615 (Print) 1532-6888 (Online) Journal homepage: http://www.tandfonline.com/loi/hchc20

Medical Neglect and Pediatric Obesity: Insightsfrom Tertiary Care Obesity Treatment Programs

Jane Gray, Adelle Cadieux, Brooke Sweeney, Amy R. Beck, Susan Edgar,Ihuoma Eneli, Elizabeth Getzoff Testa, Kristi Paguio, Melissa Santos & WendyL. Ward Ph.D., ABPP

To cite this article: Jane Gray, Adelle Cadieux, Brooke Sweeney, Amy R. Beck, Susan Edgar,Ihuoma Eneli, Elizabeth Getzoff Testa, Kristi Paguio, Melissa Santos & Wendy L. Ward Ph.D.,ABPP (2016): Medical Neglect and Pediatric Obesity: Insights from Tertiary Care ObesityTreatment Programs, Children's Health Care, DOI: 10.1080/02739615.2016.1163488

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Running Head: MEDICAL NEGLECT AND PEDIATRIC OBESITY

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Medical Neglect and Pediatric Obesity: Insights from Tertiary Care Obesity Treatment Programs Jane Gray

Dell Children’s Medical Center/Texas Center for the Prevention and Treatment of Childhood Obesity

Adelle Cadieux

Helen DeVos Children’s Hospital

Brooke Sweeney and Amy R. Beck

Children’s Mercy Hospital and Clinics

Susan Edgar and Ihuoma Eneli

Nationwide Children’s Hospital/Center for Healthy Weight and Nutrition

Elizabeth Getzoff Testa

Mt. Washington Pediatric Hospital/Weigh Smart Program

Kristi Paguio

Helen DeVos Children’s Hospital/Spectrum Health Medical Group

Melissa Santos

Connecticut Children’s Medical Center, Hartford Hospital/The Institute of Living

Wendy L. Ward, Ph.D., ABPP

University of Arkansas for Medical Sciences College of Medicine/Arkansas Children’s Hospital

Abstract

Interprofessional pediatric obesity treatment teams may consider filing a report for medical

neglect with their state child protection agency when a child’s family is consistently non-

adherent to treatment recommendations and the child is medically at risk. The multifactorial

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nature of the etiology and treatment of obesity makes this a challenging issue to navigate with

families and child protection agencies. The aims of this paper are to 1) highlight common

challenges faced by teams when addressing medical neglect, and 2) offer insights on navigating

the medical protection of children with obesity and associated medical conditions in a way that

minimizes adverse outcomes.

Keywords: pediatric obesity, medical neglect, interprofessional team, Introduction

Healthcare providers are mandated to report medical neglect when a child’s health and safety is

at risk due to failure or refusal on the family’s part to provide treatment or provide access to

treatment. Medical neglect is defined as failure to meet the healthcare needs of a child, resulting

in harm to the child’s health, and represents a serious adverse experience in childhood with

immediate and long lasting sequelae into adulthood (Dubowitz, & Black, 2002). In cases where

the predominant concern for neglect is the child’s excess weight, the problem is often

complicated by the presence of multiple family members and health providers, the social and

medical complexity of obesity, spectrum of severity, and the prevailing societal bias that

attributes severe obesity primarily to personal responsibility.

Treatment of Pediatric Obesity

Treatment of pediatric obesity is addressed using a staged approach (Spear et al, 2007). Initially,

primary care providers offer prevention (Stage I). At Stage II, providers give basic counseling

on healthy lifestyle changes including increasing healthy foods, physical activity and decreasing

screen time. When the child continues to gain weight despite these efforts, the family is then

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referred to a Stage III pediatric weight management clinic. These clinics typically offer medical

evaluation, dietary counseling, exercise instruction, and behavioral counseling with a

psychologist or other behavioral health specialist. This interprofessional approach has been

found to be effective in improving weight-related health outcomes in children and adolescents

(Whitlock et al, 2010). Initial signs of success may include modified behaviors that promote

slowing of the rate of weight gain, stabilization of weight, stabilization of body mass index

(BMI), and eventually decrease in BMI. These behavioral changes can also improve

comorbidities associated with obesity, including high blood pressure (Shi, Krupp, & Remer,

2014). If families regularly attend and actively participate in appointments and implement

recommended changes, they are more likely to experience positive outcomes. As utilized in

primary care settings, weight management teams typically try to use a strengths-based approach

to assist families in recognizing their strengths and resources, identify barriers and realistic

solutions, and provide connection to additional resources in order to enhance engagement and

adherence (American Academy of Pediatrics, 2013; Flaherty, Stirling & The Committee on

Child Abuse and Neglect 2010).

Identified comorbidities to pediatric obesity include diabetes, hypertension, sleep apnea,

uncontrolled asthma, orthopedic concerns, and/or psychological comorbidities (Deckelbaum &

Williams, 2001; Reilly et al., 2003). For those children already manifesting comorbid conditions

related to their obesity, success in treatment is initially measured by the positive behavior

changes needed to improve health and manage their comorbidities over time, and eventually lead

to anthropometric changes. Typical treatment plans for children with severe obesity and

associated medical and psychological comorbidities involve intensive behavioral changes in

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nutrition and physical activity in addition to management of these medical comorbidities and

mental health concerns (Spear et al., 2007). Common barriers to success include inadequate

resources including transportation and lack of insurance coverage, implementation barriers such

as the complexity of recommendations and difficulty managing child behaviors in response to

change, and scheduling, expressed as a difficulty missing school or work (Hampl et al 2012).

Thus, it is not surprising that the patients and caregivers often struggle with consistently

attending appointments much less making the recommended changes. The intensity of treatment

can create challenges related to communication, family engagement, attrition, and mutual

understanding of the problem across parties.

It has been theorized in psychological literature that patient factors outside of the control of the

treatment environment, such as lack of supportive family members or living in environments in

frequent crisis, may have the most impact on overall outcomes when compared to factors that

can be more directly impacted in a course of treatment (Thomas, 2006). In other words, the

barriers commonly experienced by these families may predict poor response to treatment

regardless of the interventions offered. From a cultural perspective, the culture of low

socioeconomic status, or poverty, may also create a forced choice along a hierarchy of immediate

needs that may minimize the opportunity for a patient and family to implement lifestyle change

recommendations (Payne, 2005). Additionally, cultural differences and beliefs about weight can

be barriers to change and treatment success. Specifically, prevalence rates of obesity are higher

among racial/ethnic minorities. Aside from increased rates of obesity-related risk factors, such

as greater consumption of fast food and sugar-sweetened beverages, as well as lower physical

activity levels with fewer safely accessible environments in which to be physically active, beliefs

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about obesity may vary by race/ethnicity. In some cultures, a healthy weight may be negatively

construed as underweight, which may connote negative beliefs such as malnutrition. Further,

cultural expectations about larger body shapes and heavier weights may promote lifestyle

behaviors that lead to these outcomes (Peña, Dixon, & Taveras, 2012). Therefore, when

unhealthy weights are normalized as healthy or unable to be changed, it can be challenging to

help a patient and family find motivation to change.

Pediatric Obesity and Determination of Medical Neglect

Before a referral for neglect is made, health care providers must first assess for the presence of

medical comorbidities, and the potential for those comorbidities to cause imminent harm

(Varness, Allen, Carrel, & Fost, 2009). The severity of the child’s weight, and failure to reduce

the weight, do not meet the threshold for neglect on their own. Rather, the essential factor for

neglect is whether the risk of imminent harm from life-threatening medical conditions exists at

the time of the report (Varness et al, 2009; Viner, Roche, Maguire, & Nicholls, 2010). Varness

and colleagues (2009) identify four levels of risk, with higher levels indicating a stronger case

for medical neglect. The first level is the presence of obesity without a comorbid condition, and

the second level represents the presence of a comorbidity that has the potential to harm the child

in the future, but is reversible. At the third level, the comorbidity has the potential to cause harm

in the future and is not reversible, and at the fourth level, the child’s comorbidity has the

potential to cause imminent, irreversible harm. In order to determine whether medical neglect is

a potential concern, and the level of risk present, healthcare providers must evaluate several

factors. The literature available provides some guidance for providers in terms of factors to

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assess, including the presence and severity of medical comorbidities, the presence and

reversibility of imminent harm, the nature and evidence base of the treatment and availability of

alternatives, challenges with the family’s effort and engagement related to treatment, and the

presence of parent behaviors that directly interfere with treatment (Varness et al., 2009; Viner et

al., 2010). As these factors are increasingly present and pose a barrier to treatment, the

probability that medical neglect is present increases; however, the literature lacks a well-

developed tool or measure to evaluate for medical neglect in pediatric obesity..

As with any other child who presents with protection concerns (e.g., physical abuse) two

additional questions must be considered: is the child’s welfare at risk by staying in the home, and

is there an alternative to removing the child from the home (Garrahan & Eichner, 2012; Varness

et al., 2009)? In the case of obesity, answering the first question with certainty is a challenge due

to several factors which are difficult to predict or ascertain. As is the case with other medical

conditions, when families fail to participate in or access the healthcare necessary for their child’s

condition, and/or fail to follow recommendations, it is difficult to disentangle factors inherent to

illness management such as lack of resources, limited effectiveness of the intervention, or the

etiology of the medical condition itself, from a refusal or inability to care for the child

(Dubowitz, Giardino, & Gustavson, 2000, Fornari, Dancyger, Schneider, Fisher, Goodmand, &

McCall, A, 2001; Nejtek, Hardy, & Winter, 2010). With respect to the latter issue, while removal

from the home is an intervention that is likely to immediately stop harm to a child who is being

physically or sexually abused, this intervention may actually worsen a child’s obesity (Murtagh

& Ludwig, 2011).

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Need for Further Guidance for Healthcare Providers

Although the determination of medical neglect has been made more clear via the above

recommendations, healthcare providers who take care of and advocate for children with severe

obesity often find themselves struggling with how to navigate child neglect guidelines in a

manner that offers the child the best outcome while maintaining a respectful and nurturing

relationship between the healthcare team, the patient, and the family. Concern for the child’s

safety rises when assessment indicates caregiver understanding of an evidence-based treatment

plan while displaying behavior that prevents the child from getting such treatment (e.g. missing

appointments, refusing to make changes, providing unhealthy foods, etc). Yet survey results

suggest that, in general, physicians are hesitant to report abuse and neglect due to negative

experiences such as ineffectiveness of state intervention and impact on relationship with the

patient following a report (Flaherty, Sege, Binns, Mattson, & Christoffel, 2000; Vulliamy &

Sullivan, 2000). Sustaining family’s engagement in weight management treatment can be

particularly challenging due to multiple contributors such as frequency of and distance to

appointments, satisfaction with treatment and providers as well as the cost of such services

(Dhaliwal, Nosworthy, Holt, et al, 2014; Skelton & Beech, 2010). Attrition rates can be as high

as 73 % (Skelton & Beech, 2010). It can also be challenging to tease treatment attrition from

medical neglect. As such, the treatment of pediatric obesity brings even more complexity than

most medical conditions, so teams may be especially hesitant to report medical neglect.

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Case Series

The contributors to this paper represent an interprofessional group of pediatricians,

psychologists, and social workers from 25 pediatric obesity centers participating in the National

Association of Children’s Hospitals and Related Institutions (NACHRI, now known as the

Children’s Hospital Association [CHA]) FOCUS on a Fitter Future (FFF) focus group from 2011

through 2013, an effort convened to improve care for children with obesity. Using several

composite case examples drawn from clinical experiences, the objective of this paper is to

provide insights on addressing several common challenges that may present when medical

neglect is suspected and/or reported due to a child’s weight. These insights are aimed to reduce

or eliminate the concern for medical neglect, increase family engagement and retention in

treatment, minimize negative outcomes when a referral is made, and maximize support for the

family to successfully improve their child’s health. In each clinical example, Body Mass Index

(BMI) values are presented using recent guidelines for clinical tracking (Gulati, Kaplan, Daniels,

2012).

Case Example: Mario

Challenge: Insufficient Documentation to Support Report

Mario was a 12 year old boy with a BMI at 128% of the 95th percentile, insulin resistance, and

elevated blood pressure. Mario had been seen at a Stage III intervention program, and over three

years had continued to gain weight with an increase in his BMI up to 150% of the 95th percentile.

Per his report, his family continued to provide him with access to fast food, calorie dense and

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high sugar snacks, and large portion sizes, multiple opportunities for sedentary behaviors, and

had limited compliance with physical activity recommendations. They repeatedly demonstrated

verbal understanding of the new knowledge they gained, but failed to implement

recommendations despite his increasing BMI. The interprofessional weight management team

reviewed Mario’s case with the hospital child protection team to consider medical neglect. Due

to the nature of the language used in the chart (e.g. use of word “recommendations”), the

hospital’s child protection team felt there was insufficient documentation to support a concern

about medical neglect and did not recommend a report to the state protection agency. The

interprofessional team was advised to document the medical necessity of treatment, specific and

measurable goals, and the specific level of compliance so documentation more clearly identified

the level of risk to the patient.

Insight: Clear Documentation in Medical Chart

This example highlights the importance of clear documentation of the child’s medical chart.

Even in cases of physical abuse, if medical documentation is inadequate it is difficult to

substantiate the abuse (Jackson, Rucker, Hinds, & Wright, 2006). The importance of clear

medical records including complete history, severity of the medical condition, and

inconsistencies between the progression of the medical condition and parental report of behavior

change has been discussed for some time (Solomons, 1980). Providers are encouraged to use

direct language; use of the terms “rule out” and “alleged” may increase ambiguity in the medical

record (Jackson et al., 2006). We recommend that healthcare providers document in the medical

chart that weight stabilization is medically necessary, with the presence of imminent harm or

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potential for harm of continued weight gain. To improve documentation records, a “structured”

documentation style is recommended (Newton, Zou, Hamm, Curran, Gupta, Dumonceaux, &

Lewis, 2010). This style includes noting who provided the information, whether information

provided by the family member or patient is a spontaneous statement or is in response to a

specific question, as well as any notable reactions to statements being made. Whenever possible,

verbatim statements of patient and/or caregivers are recommended (Dubowitz & Bennet, 2007).

Documentation should differentiate between medical neglect and other factors contributing to

lack of progress in treatment, and outline the barriers to compliance and how they were

addressed (Dubowitz & Black, 2002; Guenther, Olsen, Keenan, Newberry, Dean, & Olson,

2009; Robers, Wheeler, Tucker, Hackler, Young, Maples, & Darville, 2004). The chart should

also include specific evidence of noncompliance with treatment including missed appointments,

lack of follow through with nutritional recommendations, physical activity, medical monitoring,

and efforts the clinic has made to increase compliance (Sherman, Baumstein, & Hendeles, 2001).

Treatment teams will need to document how these behaviors negatively impact the child’s health

and place the child at imminent harm. Using a consistent style of documentation across the team

can decrease ambiguity, improve communication between the weight management team and the

family, and help the hospital child protection team and/or state agency better understand the level

of risk in order to make the appropriate determination in the best interest of the child.

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Case Example: Joel

Challenge: Protection Agency’s Limited Understanding of Medical

Risk Related to Obesity

Joel was a 14 year old boy who had a BMI at 167% of the 95th percentile with several

medical and psychiatric comorbidities including severe obstructive sleep apnea requiring

Continuous Positive Airway Pressure (CPAP) treatment, nonalcoholic fatty liver disease, and

depression. Several members of the treatment team became concerned about Joel’s physical and

emotional health due to frequent and unpredictable transitions between primary caregivers,

failure for those caregivers to keep his medical appointments, and Joel’s worsening physical and

emotional condition. The team made a report to the state child protection agency, providing

education to the intake worker about the seriousness of Joel’s medical comorbidities and how

parental behavior negatively impacted his health. The team explained potential immediate harm

as well as long-term impact. The child protection agency investigated the report but did not

provide more intensive services for the family or make changes to Joel’s living arrangements,

and Joel continued to fail to attend appointments. He continued to gain weight and his

psychiatric comorbidity worsened, requiring an inpatient psychiatric hospitalization for a suicide

attempt.

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Insight: Communicate with Agency Workers about Risk of Obesity

and Comorbidities

This example demonstrates that protection agency workers may have limited understanding of

the potential risk to the patient when obesity and related medical comorbidities are untreated.

Often these medical risks do not fit within the existing parameters of harm and safety to which

protection agencies must adhere. The imminent danger threshold is difficult to meet in pediatric

obesity. Healthcare providers should provide the child protection agency with the rationale

behind medical necessity of treatment and the severity of medical risk and harm to the child

when treatment recommendations are not followed (Jenny, 2007). Secondly, emphasizing

evidence of the treatment nonadherence and efforts to address barriers with the family and

increase compliance offers a stronger case for the state protection worker to grasp the seriousness

of the concern (Sherman et al., 2001; Viner et al., 2010). Finally, healthcare providers should

consider the provision of clinically relevant information as their primary role and avoid any

recommendations or opinions about the placement of the child or direction of the investigation

(Bourne, 2000).

Joel’s case raises the issue of a need for additional education and training for both healthcare

providers and state protection workers in order to fully appreciate the level of risk and harm

medical neglect can bring to the child (Feng & Levine, 2005; Fraser, Mathews, Walsh, Chen, &

Dunne, 2010; Geffken, Johnson, Silverstein, & Rosenbloom, 1992). Collaboration between

obesity programs and their child abuse colleagues could lead to educational outreach efforts to

state agencies and clinical teams in order to address the issue of more effective reporting on the

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part of the healthcare provider, and more effective response on the part of the child protection

agency.

Case Example: Jessica

Challenge: Discordant Levels of Concern between the Team and the

Family

Jessica was a 7 year old female who was 175 % of the 95th percentile. Jessica had multiple

medical comorbidities associated with her obesity, including non-alcoholic fatty liver disease,

hypertension, and pulmonary hypertension. The weight management team repeatedly expressed

concerns to her caregivers regarding her continued weight gain and its impact on her physical

and emotional health, yet the family repeatedly failed to implement recommended changes. The

team discussed these concerns with the family at individual visits and patient care conferences,

and discussed the team’s obligation to make a report of medical neglect if the family did not

make efforts to address Jessica’s continued weight gain and the medical complications of her

obesity. The team worked to address barriers such as Jessica’s difficulties with food sneaking,

and her parent’s physical disability which interfered with that parent’s ability to model an active

lifestyle for Jessica and attend scheduled medical visits. The team worked with multiple

caregivers (grandparents, school, and daycare) to provide consistent messages and layering of

interventions and goals. Jessica’s family had also been having difficulty following medical

treatment prescribed by her pulmonologist and nephrologist. The treatment team obtained

written consent from Jessica’s caregivers to consult with her other medical providers. This

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provided the treatment team the ability to coordinate Jessica’s overall medical treatment, develop

a treatment plan that incorporated all of her medical needs, and establish strategies to implement

all medical recommendations. The treatment team worked with the family and other medical

providers on coordinating medical appointments to decrease interference in the family’s schedule

and reduce transportation needs by scheduling appointments on the same day for providers in the

same facility.

The team met with the entire family and communicated with outside caregivers (school and after

school childcare) to provide education about Jessica’s medical risk, and set the following goals:

1) limit access to unhealthy foods, 2) use food and exercise logs, and 3) structure meal times and

snacks across all settings. Telemedicine visits with the dietitian were added between medical

visits to address identified barriers of difficulty attending face-to-face visits due to distance and

disability of her parent. By mobilizing all involved systems (home, medical, school, and

daycare) and setting specific goals, the family’s attendance and adherence improved

considerably, Jessica’s weight decreased and her hypertension improved, the team’s concern

about neglect dissipated, and the team did not have to file a report with the state child protection

agency.

Insight: Effective Communication and Collaboration with all

Caregivers

Early collaboration between providers across medical specialties and community settings that

involve the child can be an effective first step in addressing behaviors and improving outcomes,

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thereby eliminating the concern about medical neglect (Garrahan & Eichner, 2012). Strong

provider-family relationships can have a positive impact on caregivers’ compliance (Dubowitz &

Black, 2002; Nelson, Higman, Sia, McFarlane, Fuddy, & Duggan, 2005). Thus, specifically

addressing any discordant levels of concern between healthcare teams and families, as a problem

affecting the therapeutic relationship, may increase the family’s understanding of the medical

condition and improve compliance. In the immunization compliance literature, it is

recommended that healthcare providers elicit parental concerns in order to directly address these

concerns and provide a rationale for the treatment (Diekema, 2005). This should include

evoking all barriers to change and success, even those that patients or family members may be

reticent to share, such as cultural beliefs, physical disability, or lack of resources, all of which

may create a challenge for patients to attend medical visits and engage in behavior change at the

intensity needed to attain a decrease in weight (Miller & Rollnick, 2013). Having a treatment

plan that is clear and specific, includes all caregivers including childcare providers and schools,

and demonstrates agreement from the health care providers and family is important in assuring

that the family knows what is expected (Dubowitz & Black, 2002; Dubowitz et al. 2000; Jenny

and the Committee on Child Abuse and Neglect, 2007). Telemedicine has been shown to be

acceptable to providers and patients, and may increase access for families in both rural and urban

settings, particularly low-income areas, when having difficulty adhering to recommended

medical and weight management team visits (Davis 2011, Slusser 2015) Families need to have a

good understanding of the rationale behind the goals and recommendations, the ability to follow

through with the plan, and an understanding of the consequences if the plan is not followed

(Dubowitz, et al., 2000; Johnson, 1993; Jenny et al., 2007). In Jessica’s case, multiple

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discussions and care conferences with the family and other providers was effective in preventing

the issue of noncompliance from becoming an issue of medical neglect.

Jessica’s case also illustrates that increased collaboration can be achieved by being transparent

with the family specifically about concerns related to medical neglect, including the obligation of

health care providers to report these concerns to the state child protection agency (Jenny et al.,

2007). When interprofessional team members are open with the family about these concerns, the

family is provided with more opportunity to alter their behavior. If the desired changes do not

occur, then the report to the child protection agency is an anticipated event and not a surprise to

the family. If providers keep families informed, in a compassionate manner, about the rationale

behind and progress of the report, it increases the likelihood that the family will remain in

treatment even if the provider-patient relationship is strained (Dubowitz & Bennett, 2007). Given

the sensitivity of the concern and the likelihood that the family may not be receptive, it is

strongly recommended that these conversations with the family occur with at least two members

of the treatment team. The following should be addressed during these conversations: 1) discuss

the concern and frame in terms of the risk of imminent harm to the child 2) summarize what the

team will report to the protection agency 3) succinctly outline areas the family’s inadequate

adherence with the treatment plan and attempts by the health team to address barriers, 4) describe

the resources the team is hoping to leverage via the protection agency, 5) acknowledge the

family’s strengths, and 6) communicate the team’s commitment to provide health care for the

child and support for the family through the process (Dubowitz & Black, 2002).

Case Example: Shane

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Challenge: Lack of Progress despite Intensive Intervention

Shane was a 16 year old girl with a BMI at 170% of the 95th percentile and comorbid

conditions including severe obstructive sleep apnea, hypertension and pseudotumor cerebri. As

part of a bariatric surgery program, she was expected to work with the interprofessional weight

management team to improve her diet, decrease sedentary behaviors and increase physical

activity behaviors. Despite the family attending appointments and reporting improvements in

her diet and activity, her weight increased steadily for three years. Concerns about the

discordance between the family’s reported lifestyle behaviors and Shane’s increasing weight

gain raised concern that Shane and her family were not accurately reporting behavior change.

Given the increasing risk for imminent harm as her weight increased and OSA and pseudotumor

cerebri worsened, the team became concerned about medical neglect. Following a

hospitalization that successfully stabilized Shane’s weight, the team worked with the family to

clarify goals and expectations using a collaboratively designed treatment agreement. The weight

management team and the family designed an agreement that included goals and consequences

of non-adherence with the contract, including a referral to the state’s protection agency if the

family failed to follow through with their goals. The patient, family and treatment team signed

the agreement. Goals and progress were reviewed at each subsequent visit, and barriers to

progress were identified and resolved. Positive reinforcement from the team and tangible

incentives e.g., gift cards, were provided as goals were accomplished. The treatment agreement

was revised every two weeks, and after three months was no longer needed. Due to increased

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engagement, significant behavior change, and dramatic weight loss, the team did not have cause

to report neglect to the state protection agency.

Insight: Continued Intensive Intervention and Development of a

Written Patient-Provider Agreement

In this case, as the team became concerned about non-adherence and began to consider whether

the family was neglecting Shane’s medical care, they intensified the intervention (e.g. inpatient

hospitalization) and collaboratively developed a treatment agreement with the patient and her

family. Establishing a behavioral agreement can help maintain clear expectations and hold each

party accountable (Jenny et al., 2007). These written agreements have been shown to improve

adherence to treatment in other medical conditions (Carroll, DiMenglio, Stein, & Marrero,

2011). Goals and objectives should be collaboratively developed with the family that are clearly

written and defined with a rationale that is well-understood by the family, realistic and attainable

given the family’s resources, and specific enough to be measured so that both the family and the

treatment team can observe progress (Bovend’Eerdt, Botell, & Wade, 2009; Dubowitz et al.

2000; Jenny et al., 2007; Johnson, 1993). Agreements need to have the expectations and roles

outlined clearly for each member of the family as well as the treatment team, along with

consequences if expectations are not met (e.g report of medical neglect to child protection

agency). Role definition also allows for each interprofessional team member to clearly

understand the responsibility of each discipline and provide an integrated treatment plan. This

type of role definition has a positive impact on families’ engagement with care, and ultimately

improvement in child’s weight status (McPherson, Headrick, & Moss, 2001; Vyt, 2008).

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The agreement should be regularly reviewed with the family during appointments, by phone if

appointments are missed, and with the team during team meetings, to address whether all parties

are following the agreement, adjust goals as needed, and phase out the written agreement when

appropriate (Dubowitz et al., 2000). It is imperative the team identify and address educational,

physical or cognitive limitations in the caregiver and patient which may impair successful follow

through with the plan. For instance, families with low health literacy levels will benefit from

repeated review of the plan using their preferred style of learning. The patient and family should

be praised and acknowledged for adhering to the plan either verbally or by using agreed upon

incentives tied to accomplishment of the goals. It is recommended that teams consult with their

institutions about the appropriate language for the agreement as its purpose is therapeutic rather

than a legal binding document. In Shane’s case, the development of a formal written agreement

helped improve her treatment outcomes, preventing a referral to the state protection agency. See

appendix for a sample agreement.

Case Example: Jack

Challenge: Family Disengagement after a CPS Report

Jack was a five year old boy with severe obesity, developmental delays, and Blount’s disease.

His family was of low socioeconomic status and struggled with food insecurity, significant

financial difficulties, and lack of access to transportation. These barriers contributed to poor

attendance to clinic appointments and adherence to treatment plan. Despite intensive case

management support by multiple medical social workers on the treatment team, the family did

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not make any lifestyle changes or follow through with repeated referrals to community resources,

either of which might have reduced the need for a medical neglect report. Jack’s BMI continued

to increase, worsening his Blount’s disease and further reducing mobility.

Team discussions over time reviewed the definition of medical neglect and assessed for

supportive or discounting evidence of such neglect. Social work was included as a member of

the team and consultation with Child Protective Services (using a “hypothetical” case and asking

for whether sufficient evidence was present to suggest medical neglect and if so what services

might be available) was helpful in making a determination. As evidence supportive of the

presence of medical neglect was discovered over time, discussions about whether to and/or how

to tell the family about the report ensued. At the time that the decision was made to report, the

family was told about the report and framed in a discussion of the need for greater support in

terms of financial aid, reducing food insecurity, and providing reliable transportation to

appointments. It was emphasized that this was not a punitive measure for a way to obtain more

services and out of concern for Jack’s wellbeing.

A report was made to the state child protection agency for medical neglect, and the case was

investigated and substantiated. The case was followed in family court for several years. During

this time, the family demonstrated increased engagement in treatment and benefited from

resources provided by the state. Jack’s mother enrolled in a job training and placement program

and Jack received early intervention and childcare. Transportation to appointments was provided

by the state. With this support, the family improved attendance to subspecialist appointments

and Jack’s BMI steadily dropped. Despite these improvements in engagement, the relationship

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between the family and the weight management clinic was strained following the report of

neglect. Further, once the child protection case was closed, the state could no longer offer extra

community resources, and the family began to again miss weight management appointments and

Jack’s BMI increased.

Insight: Continued Engagement and Community Resources During

and After Report

This example demonstrates the likelihood of benefit when appropriate services are initiated as a

result of a report to a child protection agency, and the need to continue to leverage community

resources after the case is closed. The report to the state protection agency provided services that

reduced barriers, provided an additional level of accountability, and supported the family to

successfully initiate change, but the relationship between the family and weight management

team was strained despite careful framing of the report as a supportive action made to protect

Jack’s welfare and obtain services for the family. When the case was closed, resources were

discontinued and the family began to struggle again with engagement. Ongoing engagement in

community and medical programming is important for families to maintain success, but these

resources are limited. If resources need to be discontinued, it may benefit families if services are

gradually phased out, with an emphasis on helping families build the skill and/or alternative

resources needed to maintain change.

The communication strategies outlined earlier in Jessica’s case are especially relevant when a

report of medical neglect must be made, so that the family remains engaged in weight

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management treatment. Careful framing of the report is key to minimize the potential negative

impact on the therapeutic relationship. After a report is made, careful attention to relationship

re-building can be helpful. Healthcare providers can employ cognitive behavioral strategies such

as mindfulness, validation, and positive self-talk, while working with families, in order to

enhance patient-provider interactions (Beach, Roter, Korthuis, Epstein, Sharp, Ratanawongsa, et

al., 2013; Butalid, Verhaak, Boeije, & Bensing, 2012; Martin, Roter, Beach, Carson, & Cooper,

2013).

Conclusions and Implications for Practice

The determination of medical neglect includes consideration of the severity and risk of morbidity

of the medical condition, whether the medical condition can be reversed, effectiveness of the

intervention, the presence of an alternative treatment option that can successfully address the

problem, and whether the caregiver treatment non-adherence exposes the child to imminent harm

(Varness et al., 2009, Viner et al, 2010). However, as illustrated in the last case example,

families often have a negative reaction to a report of medical neglect and may disengage from

treatment with the interprofessional team. Thus, in addition to creating a collaborative treatment

plan with clear roles for each individual on the family and treatment team and expectations

related to adherence, it is critical that the team communicate the obligation to report medical

neglect over successive visits using a strengths-based approach that affirms the caregiver and

child. The team will also need to be responsive to the family’s needs and barriers to change, and

demonstrate to the family that the team remains committed to provide optimal care for the child

and support the family. Discussing the need to report must be approached thoughtfully and

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carefully to minimize the damage to the therapeutic relationships. It is helpful if one or two

members of the team take the lead on these difficult discussions. Assisting with leveraging

resources for the family to address the child’s obesity as well as to overcome barriers to change,

can help the family be more successful with initiating and maintaining progress. Finally, building

a collaborative relationship with the state child protection agency and exploring reciprocal

learning opportunities for child protection agency workers and the treatment team will help

minimize negative outcomes.

The issue of determining medical neglect is challenging for weight management teams, given the

complexity of pediatric obesity and the nuances involved in defining imminent harm to the child.

Drawing from the wealth of experiences of the Children’s Hospital Association’s FOCUS on a

Fitter Future group of pediatric obesity centers, this paper provides insights for providers who

may be faced with this challenging problem. There are substantial opportunities for further work

in this area. Research and case study could provide more definitive guidelines with respect to

variables such as the degree to which health worsens and the duration of non-compliance before

neglect is present. A more structured protocol or measure to assess for medical neglect could

assist providers in making more accurate, objective, and timely reports of medical neglect.

Health care providers may also benefit from a professional forum to obtain consultation on

navigating the issue of medical neglect in the case of obesity in a way maximizes the

effectiveness of the interprofessional team and minimizes any negative impact on the child.

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Table 1 Summary of Challenges, Potential Outcomes and Recommended Action

Challenge Possible Outcome Recommended Action

Insufficient documentation to

support report

Report may be taken by

agency, but may not be

investigated, leaving

child at continued

medical risk

Clear documentation in medical

chart

Protection agency’s limited

understanding of medical risk

related to obesity

Report may be taken by

agency, but may not be

investigated, leaving

child at continued

medical risk

Communicate with agency

workers about risk of obesity

and comorbidities. Build a

collaborative partnership with

local state agency

Family’s limited understanding

of medical risk related to obesity

Limited awareness that

behavior is neglectful

may lead to continued

behavior that puts child at

medical risk

Effective communication with

family about health risks and

adherence to treatment plan.

Identify preferred methods of

learning for child and family.

Lack of progress despite Missed opportunity for Develop patient-provider

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intensive intervention team to intervene to

address medical risk

contracts with goals,

acknowledgement’s and

consequences. Explore reasons

for resistance using motivational

interviewing techniques. Define

role for each member of

interprofessional teams, map out

an integrative plan across

disciplines

Family disengagement after a

report

Family may continue

behavior that puts child at

medical risk.

Discuss concerns regarding

neglect over successive visits

prior to report. Use strength-

based approach in treatment

plan. Continue use of

engagement techniques and link

to community resources during

and after report

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Appendix

Sample Patient-Team Written Agreement

Date:

Plan for Shane’s Care

Weight Management Clinic will:

• Schedule follow up visit in the clinic

• Work with the family to develop and track use of meal plans (name of dietitian)

• Work with family to develop and track participation with exercise plan (name of physical

activity expert)

• Work with family to develop individualized goals, and assist family in meeting those

goals (name of psychologist)

• Make a home visit to identify additional needs to maximize success (name of social

worker)

• Call the family 2 times a week to provide support, encouragement, and identify any needs

(name of social worker)

• Provide resources to assist with transportation (name of social worker)

Shane will:

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• Keep a food diary every day

• Follow meal plans developed with (name of dietitian)

• Follow exercise plans developed with (name of physical activity expert)

• Practice skills learned with (name of psychologist)

• Ask family for support in meeting goals

Ms. Smith will:

• Arrange for transportation for Shane to come to appointments

• Cancel an appointment only if necessary (illness, emergency) and call as far ahead of

time as possible to cancel and reschedule

• Participate in physical activity with Shane at least twice a week

• Provide encouragement and praise to Shane for her efforts at least once a day

Whole family (grandparents, sister, stepfather) will:

• Work with dietitian to understand which foods to have in the home, and use label reading

when grocery shopping.

• Eat at least one meal together as a family each week, with healthy food choices.

Everyone eats the same meal, at the table, with no televisions on.

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• Get rid of secret stashes of treats.

• Do their best to encourage Shane by doing physical activity together instead of watching

tv.

_____________ ________ _____________ _______

Patient Signature Date Guardian Signature Date

_____________ _______ _____________ _______

Family Signature Date Family Signature Date

_____________ _______ _____________ _______

Staff Signature Date Staff Signature Date

Note: If this plan is not followed, the team will need to reconsider whether the program is

appropriate for Shane’s needs, and/or may need to involve other resources to protect Shane’s

health and safety (e.g. hospital protection team and/or state child protection agency).

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medical neglect and pediatric obesity: insights …...interprofessional pediatric obesity treatment...

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