1 Recognizing and Managing Issues with Medical Neglect Leslie D. Quinn, MD Child Abuse Pediatrician St. Joseph s Hospital and Medical Center Childhelp Children s Center
2 Objectives Define child neglect Recognize medical neglect Discuss issues and controversies in Medical Neglect Understand management of Medical Neglect Discuss cases
4 2006 Statistics Child Maltreatment United States 885,245 victims (substantiated) 567,787 neglect (64.1%) 142,041 physical abuse (16.0%) 19,180 medical neglect (2.2%) 78,120 sexual abuse (8.8%)
6 Neglect Definition A condition in which a child s basic needs are not met, regardless of cause (Helfer, Dubowitz). Acts of omissions by those responsible for the child s health or well-being. Clear and identifiable harm or injury is the legal context for definition. Potential harm or risk can also play a role in degree of suspicion.
7 Failure to Meet a Child s Needs (in Neglect cases) Food Clothing Shelter Health care Education (this varies per state) Supervision, safekeeping, protection Nurturance
8 Considerations Is there actual or potential harm? What is the severity of harm or risk? What is the frequency or chronicity of the neglect? Is there a pattern of omission of care?
9 Examples of failure to meet Healthcare Needs Basic health care not obtained Lacks immunization Overuse of ED services No use of MD at all even w/severe illness Prescriptions unfilled Caries (dental cavities) untreated Chronic illness recommendations not followed Poor compliance with recommendations Prescribed psych help not obtained Failure to allow treatment for serious illness
10 Medical Neglect Definition Non-adherence to medical recommendations Delay or failure in seeking medical care Refusal to allow health care Mistrust of medical care system Religious or cultural attitudes
11 Medical Neglect Caregiver is responsible for recognizing health problems and seeking necessary health care in a timely manner. Reasonable layperson standard Child s health care needs are not met, resulting in actual or probable significant harm. Was the delay in care significant?
12 Considerations Is there actual or potential harm? What is the severity of harm or risk? What is the frequency or chronicity of the neglect? Is there a pattern of omission of care?
13 Etiology of Medical Neglect No single cause Multiple and interacting factors at many levels Individual (parent and child) Child temperament Mental illness/substance abuse Familial Support Financial Insurance (or lack thereof) Undocumented Societal Educational (parents understanding of illness)
14 Medical Neglect Despite the etiology, medical neglect is harmful to the child Identifying contributory factors crucial for planning intervention
15 Medical Neglect Children with chronic conditions require careful management and are at greater risk for medical neglect. Diabetes/endocrine disorders Cancers Pulmonary conditions Asthma Cystic fibrosis Transplant/transplant candidates Cardiac conditions GI conditions Premature infants with disabilities Behavioral problems Seizures
16 Reasons for Refusal of Medical Treatment Caregivers belief that an alternative treatment is preferable Grey zone where side effects become greater than the likely gain of treatment Prescribed approach is prohibited by their religion Wide spectrum
17 Religious Exemption? Jehovah s Witnesses don t allow blood transfusions Christian Scientists: 172 child fatalities because of withholding of standard medical care Some fundamentalist sects believe that illness is a sign of sin and/or that reliance on prayer is a test of faith Larger morbidity due to religious beliefs Often not brought to authorities attention (unless death is result)
18 Challenges in Medical Neglect Cases Parents refusing medical care on the basis of religious beliefs Parents argue that state-enforced medical care violates religious freedom. Judges often have to intervene if parental religious beliefs stand as barrier to essential medical care. Sometimes questions arise such as When is the child competent to refuse care? What to do when different family members don t agree?
19 Religious Exemptions Forty-six states have religious exemptions from their child abuse statutes Based largely on the arguments of various religious groups that the US Constitution guarantees the protection of religious practice But this situation is changing
20 AAP View The opportunity to grow and develop safe from physical harm with the protection of our society is a fundamental right of every child. The basic moral principles of justice and of protection of children as vulnerable citizens require that all parents and caregivers must be treated equally by the laws and regulations that have been enacted by state and federal governments to protect children.
21 Religious Preference V. Medical Neglect Case #1 A 16-year-old diabetic adolescent died as a result of complications of untreated diabetes. The child developed gangrene and the parents chose to use herbal medications. The child s parents religious sect relies on faith healing, thus the parents refused to seek medical care for their daughter.
22 Challenges in Medical Neglect Cases Considerations Problem: condition progressive vs stable Treatment: well-accepted vs experimental Likelihood of success Risk vs. benefit Side effects Will treatment provide a meaningful life? Child s wishes (if age-appropriate)
23 Judicial Outcomes in Medical Neglect Cases Medical treatment needed to save a child s life Judges have ordered lifesaving medical care over a parental objection Treatment not essential to save a child s life Judges reach different results.
24 Questions to Ask in Medical Neglect Cases 1. Why did parents not seek care or comply? 2. Is there harm resulting from inaction? 3. Potential benefits of care? 4. Potential risks of care? Side effects of treatment?
25 Questions to Ask in Medical Neglect Cases 5. Expected outcome with and without care? Parents? Providers? 6. Communication Parents aware of providers expectations? Patient aware of risks, benefits, outcomes? 7. Is child of age to participate in the decision-making process?
26 Case Example #2 6-year-old was diagnosed with a spinal cord tumor. This could be treated by radiation and intrathecal chemotherapy. Child needed to be sedated for an MRI to see exact location of the tumor. Mother and grandmother refused the sedation. Both mother and grandmother are very religious. They said God would take care of her and if she was meant to be paralyzed that was God s will. Mother wanted to allow child to make her own decision.
27 Case (Con t) Child was thus unable to get the chemo or radiation as complete evaluation was not possible. Neurosurgeons and neurology needed to have MRI. MRI needed to be performed ASAP as child could be paralyzed any moment.
28 Resolution Mother and grandmother met with oncologists, neurologists, neurosurgeons, with child protection team on standby to call CPS and hospital attorneys. Mother finally agreed to treatment. Consider Ethics Committee Consult
29 Case Example #3 4-year-old child with severe asthma. Repeated ED and clinic visits for asthma exacerbations. Parents have been repeatedly recommended to remove cat from home and to smoke outside/quit smoking. Cat removed from child s room, but not the house. Child continues to have multiple episodes of asthma exacerbations and 2 recent PICU admissions.
31 Case Example # 4 13-year-old diabetic female diagnosed at age 6 years. Admitted to multiple hospitals for severely elevated blood sugars resulting in diabetic ketoacidosis over the past year. Admitted to PICU 6 times in the past 5 months. Has had to be intubated all 6 times. Mother says child is old enough to give herself her insulin and will not let mother do it. Physicians feel it is mother s responsibility to give the child the medication and she is noncompliant with medical recommendations.
33 Who Is Responsible? Parents/guardians primarily responsible for the care of the child Even if child is old enough to be responsible for some aspects of health care Contributory roles of professionals, the community, and society Communication Financial Social Services Case management
34 The Doctor s Fault?? Physicians may (unknowingly) contribute to medical neglect. parents rely on health care providers to explain a child s condition and to plan for treatment Is it possible the health care provider is not informing the parents to their comprehension? Communication is key
35 Principles of Intervention Diagnosis of medical neglect Determine immediacy of future harm Understand of all elements in the neglect Social Services case management Interdisciplinary approach Multidisciplinary Care Team Child Protection Team Ethics Committee Risk Management
36 Intervention Maternal health problems addressed Target contributory factors Use family s natural and informal supports Use cultural navigators to understand various cultural beliefs Least intrusive approach Enlist child protective services only if necessary Identify and seek community services/financial supports Make clear to all what the goals are Home health visitors Legal intervention (judges orders to compel care) is a last resort
37 Disposition Family must be willing and able Monitoring and compliance essential If placement is necessary Foster parents must be engaged fully in treatment regimen
38 Intervention INTERVENTION IS LONG TERM Tracking cases is essential to long-term success
39 Are These Cases of Medical Neglect? 1. 2-year-old missing last 2 sets of shots 2. 8-year-old severe asthmatic failed to receive needed medications 3. 7-year-old with terminal cancer parents refuse further experimental treatment year-old depressed mother refuses psychological counseling doesn t believe in that stuff
40 Are These Cases of Medical Neglect? 5. 8-year-old recurrent UTI not receiving prophylactic antibiotics medication is too expensive 6. 6-year-old leukemic. Parents refused traditional chemotherapy, uses laetrile, child dies 7. Chiropractor advises against immunizations for his patients