Religion and Medical Neglect

Sara Kilbride, DO Danielle Horton, MD SCAN Team Children's Mercy Hospital

▪ 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

▪ 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 ▪ “Some parents’ religious view lead them to eschew appropriate medical care for their children, resulting in substantial harm or suffering or death due to treatable conditions” ▪ “AAP considers failure to seek medical care in such cases to be child neglect, regardless of the motivation” AAP Statement

▪ Mature minor: disputes may be avoided when a minor has the capacity to make an independent decision in light of religious values and recommended medical therapy ▪ Pediatricians should seek to make a collaborative decisions with families whenever possible

33 AAP Statement

▪ Recommendations:

– Show sensitivity to and flexibility toward the religious beliefs and practices of families

– Support legislation that ensures that all parents who deny their children medical care likely to prevent death or substantial harm or suffering are held legally accountable

– Support the repeal of religious exemption laws

– Work with other child advocacy organizations and agencies and religious institutions to develop coordinated and concerted public and professional action to educate state officials, health care professionals, and the public about parents’ legal obligations to obtain necessary medical care for their children

34 Religious Beliefs

▪ Diverse spiritual and religious worldviews

▪ May affect parental approach to family life and raising children

– Family planning, parental roles, pregnancy, childbearing, feeding & care of infants and children, discipline, education, and health

▪ Religious beliefs may contribute both positively and negatively to health and well-being

▪ Families may pursue religious therapies as an alternative to conventional medical therapy or may wish to use complementary therapies

35 Deaths Related to Medical Neglect ▪ 1998 published study looking at deaths thought to be a result of medical neglect

– 1975-1995: 172 deaths

– 140 children with 90% chance of survival with medical care

– 18 children with 50% chance of survival

– 113 died after neonatal period

▪ Pneumonia, bacterial meningitis, cancer, type 1 diabetes, ruptured appendix, measles, dehydration

– 23 religious denominations; 5 religious groups=83% of fatalities

Asser SM, Swan R. Child Fatalities From Religion- motivated Medical Neglect. Pediatrics.1998; 101;625. 36 37 Religious Beliefs

38 Rita Swan

▪ 1977; Christian Scientist

▪ 16 month old son died from bacterial meningitis

▪ Treated x 2 weeks by Christian Science Practitioners with “spiritual treatment”

▪ Died 1 week after being hospitalized; learned that medical treatment likely would have saved his life

▪ Founded Children’s Healthcare Is a Legal Duty, Inc (CHILD, Inc) 1983

– CHILD, Inc dedicated to “protecting children from abusive religious and cultural practices, especially religion-based medical neglect”

39 Christian Science

▪ Founded by Mary Baker Eddy

▪ Healing by Christian Science Practitioners

– Policy notes they do not provide guidance on medical care but can list conditions for billing/insurance purposes when services used

– Claim to have healed 137 pediatric patients from 1971 – 1981, including leukemia, spinal meningitis, club feet and fractures (Sinal 2008).

▪ Children may never present for medical care, providing less opportunity for intervention (Sinal, 2008)

40 Faith Assembly

▪ 1963 – Hobart Freeman ▪ "medical treatment was regarded as unbelief, bringing on sickness and death by Satan" ▪ Members encouraged to heal by prayer, fasting and laying on of hands

Sinal 2008; Kaunitz 1984 41 Faith Assembly

▪ Increased infant and maternal mortality rate noted in two Indiana counties where many members resided; studied by CDC from 1975 - 1982 ▪ Estimated mortality rates – Perinatal mortality 48/1000 for Faith Assembly members vs 18/1000 births in nonmembers – Maternal mortality 872/100,000 vs 9/100,000 deliveries

Click to https://www.cdc.gov/mmwr/preview/mmwrhtml/00000345.htmadd; Kaunitz 42 1984 Case 2

▪ 2 mo old presented with altered mental status and vomiting ▪ Intracranial hemorrhage (bleed), eye bruise and retinal hemorrhages ▪ No history of accident or trauma ▪ Diagnosed with abusive head trauma ▪ Needed blood transfusion

43 Case 2

▪ Family was Jehovah's Witness and refused blood transfusion ▪ Medical team attempted to work with family to avoid transfusion as long as was safely possible ▪ Ultimately transfusion was necessary, and child was taken into emergency medical custody

44 Jehovah’s Witness

▪ Watchtower Bible and Tract Society (WTS)

▪ 1945 – published doctrine that members refuse blood and certain blood products

▪ Network Hospital Liaison Committee to answer questions about the policy & alternative treatments

▪ Members may have different interpretations of the policy

▪ More likely to present to care

▪ Fear loss of eternal salvation and excommunication

45 Case 3

▪ 17 mo old with congenital CMV and developmental delay ▪ Presented with dislocated knee joint with exposed bone ▪ Emaciated on exam

46 Case 3

47 Case 3

▪ Family is Amish ▪ Child had received care from a natural medicine doctor ▪ Sought care from a chiropractor who recommended evaluation by a medical doctor ▪ However, family continued to pursue natural care until time of presentation

48 Amish

▪ Originally part of Anabaptist movement in Europe at time of Reformation—along with Mennonite community ▪ Anabaptists believe only adults who confess their faith should be baptized and they should remain separate from the larger society ▪ 1536 Catholic priest joined the Anabaptist movement and his followers were nicknamed Mennonites (after his first name Menno) ▪ 1693 Swiss bishop broke off from Mennonite church and his followers were called “Amish” (after his name Amman)

49 Amish vs Mennonite

▪ Amish and Mennonite share Anabaptist beliefs ▪ Differ in dress, language, forms of worship and extent that modern technology and influences from “outside world” can impact their lives

50 Amish

▪ Many do not have health insurance; church comes together to pay for medical care when needed

▪ Problems are solved within the community

▪ “Healing is a gift from God”

▪ Not opposed to modern healthcare—will seek care when needed

▪ Faith healing does play a part in beliefs on medical care

▪ Tendency to seek natural remedies to illness and go to non-medical clinics such as chiropractors, therapeutic mines, natural springs

51 Other

▪ Number of groups that are "offshoots" of traditional religion that may have their own unique ideology ▪ Some may have very rigid ideals ▪ Communities may be isolated

52 Impact of Neglect

▪ Death ▪ Significant morbidity ▪ Decreased longevity ▪ Increased sick days or need for medical intervention ▪ Impact on education due to missed school Summary

▪ Interventions – Ensure the family understands the medical needs – Address barriers – Provide supportive services – Respect religious beliefs and attempts to work with family regarding complementary therapies, within reason Summary

▪ Interventions – Communicate with the medical team – Ensure the child's safety – Report to CPS and/or law enforcement may be appropriate – May need to involve court in serious illness where there is an immediate need for treatment

55 Summary

▪ Interventions – Advocacy and awareness – Education – Work with legislators to repeal religious exemptions for medical care

56 Questions??

Sara Kilbride: [email protected] Danielle Horton: [email protected] 816-234-3850