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Surg Obes Relat Dis. Author manuscript; available in PMC 2022 February 01.
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Aurora, Colorado
Abstract
Background—As severe obesity continues to rise among youth, metabolic and bariatric surgery
(MBS) will increasingly be used as a treatment of choice for durable weight loss and improvement
of obesity-related complications. MBS for youth with intellectual and developmental disabilities
(IDD) and for preadolescents has raised ethical questions.
Objectives—The purpose of this article is to present the creation and application of an ethical
framework that supports why MBS should be considered in pediatrics based on the principle of
justice without automatic exclusions. This framework also provides a guide for how to conduct a
robust, ethically-grounded evaluation of pediatric patients presenting for MBS in general, and
Author Manuscript
Corresponding author: Jaime Moore, 12631 East 17th Ave, Mail Stop F561, Aurora, CO 80045, US, Phone: 303-724-8419, Fax:
720-777-7876, jaime.moore@cuanschutz.edu.
6.Disclosures
The authors have no commercial associations that might be a conflict of interest in relation to this article.
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Moore et al. Page 2
Methods—An ethical framework was developed and applied through a collaboration between an
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MBS center at a children’s hospital and the institution’s ethics consult service.
Keywords
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1. Introduction
Standard of care for the evaluation of all pediatric patients (<18 years of age) presenting for
metabolic and bariatric surgery (MBS) incorporates ethical tenets to protect individual
choice and to promote health. Additionally, there are subgroups of youth presenting for
MBS, including individuals with intellectual and developmental disabilities (IDD) and
preadolescent children that invoke unique ethical questions for the interdisciplinary MBS
team. Guiding ethical principles in these cases include justice (fairness), respect for
autonomy (informed consent/assent), beneficence (doing good), and non-maleficence
(avoiding harm).
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As the prevalence of severe obesity in the US continues to rise across all age groups,[1] and
as data for the safety, efficacy, and cost-effectiveness of MBS in pediatrics grows,[2–5] the
volume of adolescents and preadolescents with medical complications of obesity who
present for MBS is expected to increase.[6] At what age it is most appropriate to intervene
with MBS has been debated.[7–11] In this article, we will use the term capacity to refer to
an individual’s abilities to understand and participate in medical decision-making.
Neurotypical children between age 12 and 17 are thought to have medical decision-making
capacity, with additional support from adult caregivers.[12] For children under 12, the
parent/legal guardian has primary decision-making authority, but assent from the child is
sought starting at age 7, or even younger depending on the maturity of the child.[13] Similar
to other diseases requiring surgical intervention to prevent or abate negative health
consequences (e.g. congenital heart disease, organ transplantation), the timing of MBS
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should be driven by an individual risk benefit analysis.[14] However, even if the timing of
MBS in youth were universally based on medical necessity, ethical issues would still remain
including: evaluation of the child’s capacity to assent to a procedure that causes long-term
alterations in metabolism, assessment of parental coercion, and response to disagreement
about MBS between two parents or parent and child.
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IDD originates before age 18 and is defined by significant limitations in both intellectual
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functioning (learning, reasoning, problem solving) and adaptive behavior (practical life
skills).[15] Adolescents with IDD are nearly twice as likely to be obese than those without
IDD.[16] Risk factors include limited physical activity, the need for weight-promoting
medications, food selectivity, dysregulated hunger/satiety, and stressed support systems.[17–
21] In addition to the usual impacts on physical and mental health, severe obesity for
individuals with IDD can threaten their ability to live with maximal independence, and
represents a second source of stigma.[22–24] Despite the increased risk of obesity and
potentially greater benefits of MBS in this population, IDD has historically been viewed as a
contraindication to MBS.[25,26] This stems from concerns about the individual’s ability to
assent/consent and from beliefs that individuals with IDD are not able to adhere to pre or
postoperative requirements, which could limit weight loss or increase risk of adverse events.
[27,28] However, these assumptions have not been rigorously tested. Among adolescents
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with mixed etiologies of IDD who undergo sleeve gastrectomy, two recent studies found that
IDD did not impact weight loss or adverse events up to two years postoperatively.[29,30]
The 2018 American Society for Metabolic and Bariatric Surgery (ASMBS) pediatric
guidelines and the 2019 American Academy of Pediatrics (AAP) policy statement on
pediatric MBS are closely aligned.[14,31] There is no lower age limit defined for MBS by
ASMBS/AAP, and the guidelines note that neither pubertal staging nor linear growth should
impact candidacy for MBS. The guidelines do differ in their definition of adolescence
(ASMBS uses the World Health Organization range of 10 to 19 years and the AAP uses 13
to 18 years). Both guidelines state that any “medical, psychiatric, psychosocial, or cognitive
condition that prevents adherence to postoperative dietary and medication regimens” should
be considered a contraindication to MBS. However, the ASMBS statement also explicitly
notes, “We do not want to exclude patients with limited decision-making capacity who suffer
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from severe obesity and/or co-morbidities for which surgery is the only effective therapy.”
Further, it advises that “When a child does not have the decisional capacity, but is able to
demonstrate the ability to make lifestyle changes required by MBS with or without…a
dedicated caregiver, then MBS should be considered. Both parents and the entire
multidisciplinary team with consultation of the ethics committee, where appropriate, should
agree that MBS is the best course of action.”[14]
Thus, while national guidelines discourage the outright exclusion of preadolescents and
individuals with IDD for MBS, and encourage consultation with an ethics committee to
achieve clarity about the treatment plan, how to perform this ethical evaluation within a
youth-focused MBS center has not been clearly defined.
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The purpose of this manuscript is to translate these national guidelines by presenting the
development and application of an ethical framework (Appendix) for the evaluation of
pediatric patients seeking MBS. This framework describes key elements of the ethical
evaluation for any pediatric patient presenting for possible MBS, and includes individual
ethical analysis for challenging subpopulations including youth with IDD and
preadolescents.
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2. Methods
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2.1 Setting
Metabolic and bariatric surgery center at a tertiary care children’s hospital within a US
academic medical center.
for MBS? 2) How should it be determined that the benefits of MBS outweigh the risks? 3)
How should it be determined that the patient adequately understands and can cooperate with
both the surgery and associated follow-up care with appropriate supports? and 4) How
should the determination be made that the decision to pursue MBS was uncoerced and
voluntary? Additionally, the framework can educate MBS team members about ethical
principles and standardize the process by which the MBS team identifies ethical concerns.
3. Results
3.1 Application of the Framework
When a clinical concern arises from any member of the MBS team, the framework is first
referenced to clarify whether an ethical question exists, to help define what that ethical
question is (Table 1), and to determine if an ethics consult is needed. In actuality, ethical
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values are embedded in every possible clinical judgment. But, the degree of uncertainty and
tension created by these ethical values varies widely depending on the clinical scenario.
After the MBS team reviews and applies the framework to the clinical scenario, there are
two possible outcomes: 1) the MBS team independently resolves the conflict or 2) the MBS
team determines that they cannot proceed with a care plan without an ethics consult (Figure
1). The latter may occur because of uncertainty or disagreement about the ethical sensitivity/
complexity of the case.
If an ethics consult is placed, the ethics team joins the MBS team during their patient
conference to better understand the clinical context for the ethical question(s) posed. The
ethics team then meets with the family, and ultimately communicates their assessment and
recommendations with a note in the electronic medical record. A key role of the ethics team
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is to advocate for all voices to be heard (both from the MBS team and the family). MBS
team members are encouraged to openly share their opinions, questions, or doubts with the
ethics team, and also have multiple opportunities to share concerns without the ethics team
present before coming to a decision. The final decision requires full MBS team signoff and
typically results in either proceeding to surgery, recommending a non-surgical intervention,
or extending the preoperative phase to allow for additional monitoring.
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The framework is not designed to replace the ethics consult team, which as noted above, can
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provide a critical, objective advisory function. Rather, it provides guidance to the MBS team
to construct pertinent ethical questions, and may be used to resolve conflict or uncertainty
within the MBS team in some situations. Additionally, the outcome of the ethics consult is
not a stamp of approval or denial to proceed with MBS. Rather, it provides an expert
analysis of the ethical issues identified and contributes an outside perspective, which the
MBS team can use as part of their decision-making process.
Two hypothetical case-based examples illustrating the application of the ethical framework
and the complementary role of the ethics consult team are presented below:
3.1.1 Case 1—A 17 year old Hispanic male with body mass index (BMI) of 42kg/m2,
was referred by his primary care physician for MBS consideration. His past medical history
includes autism spectrum disorder, IDD, and depression with behavior challenges that
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previously provided significant respite and financial support, but recently died. The patient’s
mother endorses food insecurity, receives supplemental nutrition assistance benefits, and
struggles with her son’s intake of large portions, frequent requests for food in between
meals, and occasional refusal to take medications.
Ethical questions: 1) Should this 17 year old with IDD whose practical life skills are
consistent with that of an 8–9 year old be considered for MBS? If so, what considerations
are important in the evaluation?
[Framework section III]: “Patients with IDD should not be excluded from consideration for
bariatric surgery because respect for the principle of justice demands non-discrimination.”
“The decision to proceed with surgery should be patient-centered rather than diagnosis-
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centered.”
Key considerations in this patient’s evaluation include his current health status, the patient
and his mother’s personal values and goals, an understanding of what prior weight
management approaches have been tried, an individualized evaluation of benefits of MBS
versus risks, a comprehensive psychosocial evaluation with attention to family dynamics and
support, and an assessment of the patient’s decision-making capacity.
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2) How should it be determined that the benefits of MBS outweigh the risks?
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Potential medical benefits of MBS in this case include a reduced risk of progression to T2D,
improvement/remission of hypertension, improved lipid profile, and reduced risk of incident
cardiometabolic disease.[2,3,33] Potential psychosocial benefits include reduced stigma
associated with obesity as he transitions from high school to the workplace.[23]
Additionally, improvements in health related quality of life, body image, and depressive
symptomatology are possible benefits.[34,35]
Potential risks include [Framework section II] “anatomic complications (such as gastric
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The likelihood of a subset of these risks may be greater if this patient, with appropriate
family support, is unable to adhere to postoperative dietary and medication
recommendations.
3) How should it be determined that the patient adequately understands and can cooperate
with both the surgery and its associated follow-up care with appropriate supports?
[Framework section III]: “Patients who have limited or no ability to assent or cooperate
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should have those limitations taken into account when weighing the risks and benefits of
proceeding with surgery. Attempts should be made to compensate for these limitations with
analysis of the risk-benefit to the patient, additional support from parents/guardians and the
treating team, and an honest and transparent description of the likely outcomes given these
limitations.”
The pediatric psychologist evaluated the patient and determined that he had limited
decisional capacity based on his communication, understanding, appreciation, and reasoning
during clinical encounters.[36] The patient had difficulty with: (1) expressing a strong
preferred treatment choice, (2) showing a grasp of the fundamental meaning of surgery, (3)
acknowledging treatment consequences, and (4) being able to manipulate information
received about treatment. However, during monthly preoperative visits, his level of
understanding of what MBS was and what he had to do to lose weight and to remain safe
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after surgery was appropriate for his level of developmental functioning. The MBS team set
clear written expectations for the preoperative period, which included achieving weight
stability, self-monitoring intake of water and protein using a phone application, and
developing a system for taking medications more consistently. Additionally, the mother was
asked to identify a second source of support. Subsequently, the patient’s maternal aunt was
identified as an additional caregiver and regularly attended patient appointments.
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Here, the ethical framework [section III] incorporates the 2018 ASMBS recommendation
that “When a child does not have decisional capacity, but is able to demonstrate the ability to
make lifestyle changes required by MBS…both parents and the entire multidisciplinary team
with consultation of the ethics committee, where appropriate, should agree that MBS is the
best course of action”.[14]
The ethics consult team was consulted at the 3rd preoperative visit, met with the family and
with the mother’s consent, conducted interviews with the patient alone, mother alone, then
patient and mother together. The ethics consultants asked about their understanding of the
possible surgery, why they wanted the surgery, and what the challenges would be. They also
asked each about their confidence to perform the tasks (e.g. following the dietary
progression, taking vitamins daily) enumerated by the MBS team. They determined that the
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patient expressed an independent desire for the surgery stating, “I don’t want to get diabetes
and I think this will help me.” Thus, while the patient’s reduced decisional capacity limited
the team’s reliance on the patient for assent, the patient importantly expressed no
disagreement with the option of moving forward with surgery.
The MBS team debriefed with the ethics consult team, and concluded that the benefits of
MBS to the patient outweighed the potential risks, particularly given the demonstration of
committed family support, and that the patient was considering surgery without undue
influence from his mother. The MBS team recommended proceeding with surgical
preparation.
3.1.2 Case 2—An 8 year old non-Hispanic white female, BMI 50 kg/m2 with past
medical history of moderate obstructive sleep apnea and left-sided slipped capital femoral
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epiphysis requiring surgical stabilization 6 months prior was self-referred by her parents for
MBS evaluation. Family history is significant for severe obesity in several maternal relatives.
The patient’s mother underwent sleeve gastrectomy 2 years ago and has maintained a 25%
weight loss. The patient is neurotypical and excels in school. She is an only child and lives
with her mother and father. She has experienced bullying about her weight since first grade
and receives counseling at school for this concern. Prior attempts to achieve weight
stabilization have focused on lifestyle changes recommended by her pediatrician. Parents
say they “have tried everything” and nothing seems to slow her rapid weight gain. Mother
expresses that “she doesn’t want her daughter to suffer like she did” and knows the surgery
will be the best option.
[Framework section V]: “A decision by the bariatric team to offer bariatric surgery to a
preadolescent would be based on the same obligations of justice not to discriminate against
medically appropriate patients based solely on age.” [Framework section II. 2.]: “Patients
and families should first be offered more conservative and less invasive options for treatment
and should have either not responded to those treatments or have patient-specific factors that
make the particular patient a poor candidate for those treatments.”
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At the first preoperative visit, the MBS medical provider’s assessment revealed that the
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family had not yet been offered intensive non-surgical approaches for weight loss. At the
pediatrician’s suggestion, they had increased daily fruit/vegetable intake and physical
activity, and decreased screen time and sugar-sweetened beverages (all consistent with Stage
1 Prevention Plus treatment).[37] They had not yet engaged in a structured weight
management program with dietitian or physical activity support (Stage 2), and were not
aware that she could qualify for a medically-supervised dietary approach (e.g. meal
replacement, high protein very low carbohydrate meal plan) or anti-obesity medications
(Stage 3–4).[37]
2) How should it be determined that the benefits of MBS outweigh the risks?
[Framework section V]: “The decision should be based on an assessment of the balance of
potential benefits and harms for the individual patient….Parents should be informed that it is
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possible that novel harms could be discovered after their child undergoes the surgery….A
conservative approach would defend waiting to expand surgery in preadolescent children
until more is known, or at least limiting surgery to those most at risk of immediate obesity-
related complications.”
Potential medical benefits of MBS in this patient include preventing progression of her hip
disease with overall improved physical function,[38,39] improvement of obstructive sleep
apnea,[40,41] and reduced risk of incident cardiometabolic disease.[42] Potential
psychosocial benefits include reduced bullying, improved self-esteem and quality of life.[43]
The same anatomic, infectious, and nutrition-related risks of MBS mentioned in Case 1
apply here; however, the duration of exposure/time to develop these risks is longer for
children undergoing MBS at a younger age (e.g. possible gastroesophageal reflux after
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3) How should it be determined that the patient adequately understands and can cooperate
with both the surgery and its associated follow-up care with appropriate supports?
lose weight if she had more healthy foods at home, someone to exercise with, and something
to help with cravings, which were really strong when she felt sad and bored. Given the
patient’s young age, decisional capacity was assessed using simple words and short
questions matched to developmental stage and presented with her mother out of the room.
The patient expressed: (1) a desire to work on lifestyle-based strategies, (2) an awareness
that surgery was an option but she was scared about it, (3) that surgery cannot be undone but
she had a limited ability to describe irreversibility in detail, and (4) she showed some
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(manipulation of information related to treatment). Based on this evaluation, the patient did
not assent to surgery.
In this neurotypical preadolescent, an additional ethical issue for medical decision making is
that informed consent would be provided by the parents [Framework Section V]: “for an
elective invasive and irreversible procedure…with the assumption that the child would be
able to consent once older”, and may not have come to the same decision. This is a possible
risk that should be openly discussed with the family.
4) How should it be determined that the choice to pursue MBS is uncoerced and voluntary?
[Framework Section V]: “Although the presumption is that patients should be old enough to
assent to this procedure and cooperate, an ethical justification can be offered for the rare
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exceptions to this presumption, given that the requirement for assent for adolescents with
IDD can be waived, with the provision of expanded supports from their families to cooperate
with necessary management. It is less clear that children who are able to assent and refuse to
do so should be candidates for bariatric surgery.”
The ethics team was consulted at the 2nd preoperative visit, and met with the family. They
conducted separate interviews with the parents and child, which revealed the parents’ strong
preference to pursue MBS “to get ahead of medical problems she is destined to develop”. In
clear contrast, the child stated, “I want to lose weight so people stop making fun of me and I
know my mom and dad want me to have surgery. But, I’m scared of surgery. Can I try a diet
first? I’ll try harder to eat the right things. I really don’t want to do this – but I don’t want to
make my mom and dad mad.”
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[Framework Section V]: “Even though preadolescent children may lack the ability to fully
understand, they are still owed respectful treatment. One of the hardest judgements is about
when to override a child’s objection. Based on obligations to provide respectful treatment
and maintain trust and cooperation, the presumption should be not to override objections
except in the rarest of circumstances.”
The ethics consult team documented a note with an ethical analysis of the case in the
electronic medical record and debriefed with the MBS clinical team, after which the MBS
team came to a clear consensus that 1) the child’s dissent was paramount and outweighed
current medical necessity to perform MBS and 2) there were several intermediate, more
conservative treatment options they could connect the family with to achieve the primary
shared goal of BMI reduction and comorbidity improvement. The MBS team communicated
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to the patient/family that they would remain available as a resource and could re-evaluate the
medical necessity for MBS in the future.
4. Discussion
As the utilization of MBS in pediatrics increases to help mitigate the morbidity and early
mortality associated with severe obesity,[47] centers offering MBS will increasingly
encounter clinical situations that may challenge personal and professional values and raise
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ethical questions. While the latest national guidelines for MBS in youth reflect movement
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toward a patient-centered approach, with recognition of the need for equitable consideration
for subpopulations previously excluded by many,[14,31] additional resources are needed to
disseminate and facilitate widespread adoption of these recommendations. One aspect of this
work is the development of practical, standardized tools that can guide the evaluation of any
child presenting for possible MBS in an ethically sound way. The ethical framework we
present in this paper is a starting point to achieve this broader objective.
The primary intended audience for the framework is MBS programs serving pediatric
patients. However, the core ethical principles, approach, and ethical analysis of the
subpopulations outlined may be valuable for medical pediatric weight management
programs or primary care providers when considering a referral for MBS evaluation, ethics
consultation services, and adult MBS programs. Further, while we have illustrated initiation
of an ethics consult from the healthcare team, families can also be empowered to request an
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ethics consultation if they are struggling with moral distress or ethical questions of their
own.
An adaptation of this framework to adults presenting for MBS could similarly highlight
individuals with IDD, but may also include those with medical or psychiatric conditions
acquired later in life that impact decision-making capacity (e.g. traumatic brain injury,
dementia, schizophrenia), and adults over age 60.[48–50] Differences in the ethical
evaluation of adults versus youth may include: who assumes the role of the primary
caregiver (typically a parent for youth, but could be a sibling or spouse for adults) and in
what environment (commonly the family home for youth, but could be an assisted living
facility for adults). Other practical elements for an adult-focused framework could include
guidance about choosing a supported decision making versus power of attorney versus
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guardianship model,[51] the expected timeline for implementing these supports in relation to
the MBS timeline, and a description of the consent/assent process in each scenario.
There are limitations to the content and application of the framework as presented. First,
although ethics consultation services are widely available across US hospitals, not every
MBS center or provider will have access to a qualified ethics consult service when an ethical
question arises.[52] Platforms for long distance consultation including telehealth have
connected geographically remote and resource-limited settings to ethics expertise.[53]
Next, one could suggest potential bias in relying on a framework that allows the decision
about whether or not to involve the ethics service to be made by the clinical team (Figure 1).
An alternative approach could be to define specific triggers (e.g. age or diagnosis) for an
automatic ethics consultation. We contend that using an ethical framework is a stronger
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approach and actually promotes counter bias by deepening the team’s understanding of how
ethical values are embedded in all clinical judgments. It promotes discussion of ethical
issues as part of clinical practice, and makes more explicit the decision to seek outside
assistance in the form of an ethics consult.
The framework reflects our single center’s experience over a discrete period of time.
However, the framework is adaptable, and future versions could be strengthened by
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incorporating feedback and experiences from other MBS programs, and by integrating new
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data about MBS outcomes among individuals with IDD and for preadolescents as it becomes
available.
Finally, this paper aims to clarify national guidelines by developing a model for ethical
evaluation of youth presenting for MBS. However, this model has not yet been empirically
validated. Planned next steps to test the framework include prospective data collection on
preoperative variables, MBS completion rate, and clinical outcomes (weight loss,
comorbidity improvement, postoperative complications) for patients evaluated with versus
without the ethical framework across youth-focused MBS programs. Thus, while some
pediatric MBS programs may use this framework to organize their approach to assessing
patients in an ethically-sound manner, more data are needed before adoption can be
recommended.
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5. Conclusions
We present a novel overarching framework for the ethical evaluation of youth presenting for
MBS, and highlight its application to two ethically complex clinical scenarios. Extensions of
this work may include implementation of a standardized ethical evaluation for pediatric
MBS candidates nationally, and further investigation to determine if this standardized
approach promotes equitable access to MBS and/or improved clinical outcomes.
Supplementary Material
Refer to Web version on PubMed Central for supplementary material.
Acknowledgements:
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The authors would like to thank Rachel Anthony, CPNP, Bariatric Surgery Center at Children’s Hospital Colorado,
for contributions to the development and ongoing implementation of the Ethical Framework, and the patients/
families of the Bariatric Surgery Center at Children’s Hospital Colorado who stimulated this work.
Funding:
JM: National Institute of Diabetes and Digestive and Kidney Diseases, DK007658 (Krebs), an institutional T32
nutrition training grant, supported JM’s postdoctoral nutrition research. The study sponsor had no involvement in
the study design; collection, analysis, and interpretation of data; writing the article; or the decision to submit the
article for publication
Abbreviations:
MBS Metabolic and Bariatric Surgery
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[52]. Fox E, Myers S, Pearlman RA. Ethics consultation in United States hospitals: a national survey.
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Highlights:
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• The framework and cases may be a practical tool for other MBS programs
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Figure 1.
Clinical pathway for the ethical evaluation of the MBS patient
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Table 1.
Translation of clinical unease to ethical questions that can be posed to an ethics consult service
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The family has not followed through with preoperative How should the benefits of MBS be balanced against the risks of
recommendations, but medical necessity is high. poor adherence?
The adolescent and her mother appear on edge, closed off, and Is the adolescent being coerced?
acquiescent when attending visits with the child’s father, who is How should the team proceed to involve all parties to make sure all
adamant about the surgery. voices are heard and the surgery is voluntary?
The parents of an 11 year old report having tried “everything,” but there Should less invasive options be documented as unsuccessful before
are no documented attempts at organized behaviorally-based weight exposing the child to the risk of harm from more invasive
management. procedures?
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A 16 year old with severe IDD is reluctant to undergo MBS, but his
condition is approaching a critical stage (e.g. obesity-associated heart Should the team and parents override the adolescent’s wishes?
failure) and his parents are urging the surgeons to proceed with surgery.
IDD = intellectual and developmental disabilities | MBS = metabolic and bariatric surgery
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