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Religion and Medical Neglect Religion and Medical Neglect Sara Kilbride, DO Danielle Horton, MD SCAN Team Children's Mercy Hospital © The Children's Mercy Hospital, 2017 Objectives ▪ The learner will be able to define and discuss medical neglect. ▪ The learner will be able to discuss how religion and medical neglect intersect. ▪ The learner will be able to identify and discuss commonly encountered situations related to religious beliefs on medical care. ▪ The learner will be able to discuss outcomes to patients who have had medical care impacted by religious beliefs. Neglect Definition • Act of omission • Legal: causes harm or potential for harm • Occurs when children’s basic needs are not adequately met, regardless of cause ▪ Food ▪ Medical care ▪ Clothing ▪ Nurturance ▪ Education ▪ Shelter ▪ Supervision Neglect ▪ Kansas Neglect Citation: – Acts or omissions by a parent, guardian or person responsible for the care of a child that results in harm to a child or presents a likelihood of harm, and the acts or omissions are not solely to the lack of financial means of the child’s parents or other custodian ▪ Missouri Neglect Citation: – Failure to provide, by those responsible for the care, custody and control of the child, proper or necessary support; education as required by law; nutrition; or medical surgical or any other care necessary for the child’s well-being Neglect - Epidemiology ▪ 2017 Child Maltreatment Report ▪ Nationally: – 74.9% of referrals to CPS were for neglect – 1720 child fatalities for abuse or neglect – 75.4% of those who died suffered from neglect https://www.acf.hhs.gov/cb/resource/child-maltreatment-2017 Child Fatalities 2017 Maltreatment type Child Fatalities Number Percent Medical Neglect 101 7.4 Neglect 1032 75.4 Other 223 16.3 Physical Abuse 569 41.6 Psychological Abuse 30 2.2 Sexual Abuse 8 0.6 Unknown - - NATIONAL 1368 1963 143.5 https://www.acf.hhs.gov/cb/resource/child-maltreatment-2017 6 Types of Neglect ▪ Medical ▪ Safety ▪ Nutritional ▪ Educational ▪ Psychological ▪ Emotional Medical Neglect ▪ Failure to provide prescribed medical care/treatment or failure to seek appropriate care in a timely manner ▪ Examples – Delay of seeking care for known medical issue – Refusal of recommended medical care – No mental health care in a child with a history of suicide attempts – Dental Neglect = failure to provide adequate dental care (e.g. no treatment of cavities) Medical Neglect ▪ Child is harmed or is at risk of harm due to lack of health care ▪ Recommended health care offers significant net benefit to the child ▪ The anticipated benefit of the treatment is significantly greater than its morbidity so that a reasonable caregiver would choose treatment over non- treatment ▪ It can be demonstrated that access to health care is available and not used ▪ The caregiver understand the medical advice given Medical ▪ Immunizations ▪ Postnatal drug use ▪ Chronic illnesses ▪ Dental care ▪ Prenatal drug use ▪ Mental Health care Medical Neglect: Missouri ▪ Missouri Medical Neglect: The denial or deprivation, by those responsible for the care, custody, and control of the child, of medical or surgical treatment or intervention which is necessary to remedy or ameliorate a medical condition which is life threatening or causes injury. Medical Neglect includes not only serious, but mild and moderate medical neglect as well. 11 Medical Neglect ▪ 2017 Child Maltreatment report from the Children’s Bureau of the Administration for Children and Families (ACF) ▪ Of children reported for maltreatment in Missouri in 2017: – 3.5% were for medical neglect – Nationally, 2.2 % of victims of maltreatment experienced medical neglect – Reported numbers likely under estimate the number of medical neglect cases because only the most severe cases are likely to be reported to authorities (Jenny C, 2007). ▪ Nationally, 7.4% of those who died suffered from medical neglect https://www.acf.hhs.gov/cb/resource/child-maltreatment-2017 Effects of Medical Neglect ▪ Increased incidence of illnesses ▪ More sick time ▪ More time in hospitals ▪ Reduced longevity ▪ Decreased self esteem Case 1 ▪ 3 year old child presented to care with acute respiratory failure ▪ Home birth, had never been immunized or seen by a doctor. Parents stated they "do not like medicine" ▪ Large chest mass, diagnosed with T-cell lymphoblastic lymphoma Case 1 ▪ Disease is treatable and can have a good outcome, but chemotherapy needed immediately ▪ Refusal of chemotherapy would lead to death ▪ Family initially stated they needed a few weeks to decide, ultimately consented 15 Case 1 ▪ Rapid improvement with chemotherapy ▪ Family continued to have some reservations but overall compliant over the next month ▪ Family decided they did not feel comfortable with starting the next phase of chemo and ultimately transferred care to another hospital. 16 Case 1 ▪ Continued medical therapy with use of alternative/supplemental treatments over the next 7 months – At times not completely adherent with recommendations ▪ Did not arrive for a scheduled chemotherapy and medical team unable to reach family. ▪ Welfare check requested; PD arrived to find they no longer resided in their home 17 Case 1 ▪ CPS report was made. Relative said she was receiving "vitamin SEA therapy, the use of negative ions from seawater to treat medical conditions" at an undisclosed location ▪ Medical team "Patient's condition currently appears stable, as she is in remission, but that is not the same as cured...her condition will deteriorate within a short time if she does not resume treatment" – Also noted, children who complete chemotherapy for this condition have an 80-90% chance of cure and long-term survival ▪ Parents reported they decided to find a new medical team. None of her oncologists had been contacted for medical records or transfer of care. 18 Medical Neglect Approach to Evaluation © The Children's Mercy Hospital, 2017 Evaluation ▪ History ▪ Appropriate lab and x-rays ▪ Physical exam ▪ Developmental Screening ▪ Growth charts ▪ Home evaluation ▪ Timeliness of care ▪ Document objectively Assess the Situation: ▪ What is the medical concern? ▪ Who manages the medical problem? ▪ Primary care physician ▪ Subspecialist: Cardiology, Endocrine, Gastroenterology, Pulmonology etc. ▪ Where is the best place to get information about the medical problem or to get medical records? 21 What is the condition of the child? ▪ Does the child need immediate medical care? ▪ Answer is most likely yes! Send them to the place where they should be receiving care, not just the local hospital (unless there is an emergency) ▪ Does the child have all the necessary medications? ▪ Does the child have the medical supplies/equipment needed? ▪ Check with DME supply companies and pharmacies to check on equipment status and medication refill history 22 What Interventions Have Been Attempted? ▪ Help with insurance ▪ Help with transportation ▪ Financial resources ▪ Various communication attempts: phone, mail, texts, portal ▪ Previous CPS report 23 What Has The Family Done In Response to Attempts? ▪ Appointment attendance ▪ Compliance with medications ▪ Communication with the medical team ▪ Secured medical equipment 24 What Are Medical Recommendations For This Child? ▪ Medication needs ▪ Appointments with medical providers ▪ Medical equipment; in home nursing ▪ What are the risks if these recommendations/goals are not met? 25 Summary ▪ Identify the medical condition ▪ Find out who can give you more information on the medical condition ▪ What is the current condition of the child? ▪ What interventions have already been attempted? ▪ What did the family do in response to the attempts? ▪ What are the medical recommendations/goals for the child? ▪ What are the consequences if these recommendations/goals are not met? 26 Religion and Medical Neglect 27 Religious Exemptions ▪ 1944 Supreme Court Prince vs Massachusetts- "the right to practice religion freely does not include liberty to expose the community or child to communicable disease or the latter to ill health or death" ▪ 1974 US Dept of Health, Education and Welfare – required states receiving federal child abuse prevention & treatment grants to have religious exemption in cases of abuse and neglect. ▪ 1983 – Federal government removed religious exemption from the federal mandate, but only a few states have repealed the exemption. Sinal SH, et al. Religion and Medical Neglect. Southern Medical Journal. 2008: 101, 707-706. 28 Childrenshealthcare.org 29 State Exemptions ▪ Immunizations: 47 states with exemptions – Mississippi, West Virginia, California require immunization without exception for religious belief ▪ Metabolic testing of newborns: most states ▪ Prophylactic eyedrops for newborns: 11 states with exemption ▪ Lead testing: 8 states (including Kansas) offer religious exemption ▪ Newborn hearing testing: 4 states with exemption ▪ Congenital heart defects oxygen testing: at least 5 states (including Missouri) Childrenshealthcare.org Missouri Medical Neglect Exception ▪ Exception by Reason of Religious Belief: Failure to obtain specified medical treatment because of the legitimate practice of religious belief on the part of the child’s parents, guardian, or others legally responsible for the child, will not be considered to be abuse or neglect. However, the juvenile court may order that medical services be provided to the child in such a situation if such services are necessary for the health of the child. https://dss.mo.gov/cd/info/cwmanual/section7/ch1_33/se c7ch31.htm 31 AAP Statement ▪ 1997 AAP Committee on Bioethics ▪
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