Making Medical Decisions Final

Percival's Medical Jurisprudence

- 18th Century: Benjamin Rush/Thomas Percival promoted disclosure, public ed, dialogue w/ patient - No major emphasis on importance of respecting patient's rights to self determination or obtaining consent for any purpose other than a medically good outcome - 1803: Thomas Percival's Medical Ethics (revised ed. of 1794 Medical Jurisprudence), first English mention of medical ethics - Guidelines for conduct in hospital practice, private or general practice, in dealing with apothecaries, and concerning legal matters - Asserts moral authority/independence of physicians, affirmed responsibility to care for sick, emphasized individual honor - Intra-professional (physician, surgeon, apothecary) and conduct with patients - No mention of soliciting consent or respect for decision making by patients, but concern w/ truth telling - 1847: AMA Code of Medical Ethics parallel's Percival (occasionally pro benevolent deception) - 19th Century: Worthington Hooker, Richard Clarke Cabot championed patient's right to information

Amygdala

Central for processing emotions, particularly fear Implicated in aggressive behavior Also implicated in depression and anxiety Part of limbic system

Patients Excluded from Clinical Trials

- Are too sick to qualify for a clinical trial - Do not meet other eligibility criteria - Live too far away from a medical center where clinical trials are being conducted - Also, there's always risk a patient may be assigned to the "placebo" group (which deters some patients from participating)

Hippocampus

- Central to forming, storing, retrieving memories - Esp. "episodic," "autobiographic" memory - Note** close relationship to amygdala

Temporal Lobe

- Incl. hippocampus, speech-language areas - Important for: forming/storing memories, hearing speech/processing language

Learning/Reacting to Emotional Info

- Info perceived is paired w/ emotional significance - Amygdala involved in learning emotional significance of stimuli, contains hormone receptors, influences arousal/rapid behavioral response - Marked increase in hypothalamic pituitary adrenal axis (body's stress system) and marked increase in cortisol - Children w/ history of abuse and neglect may process differently

Aspect of Nuremberg Code not upheld today

- Pharma/scientific testing doesn't always occur on animals before human subjects - Prison torture (sleep deprivation, beatings, psychological torture), abuse, brutal living conditions of detainees (US prisons, Guantanamo Bay, Iraq, Afghanistan, CIA black sites)

Occipital lobe

- Region of cerebral cortex that processes visual information

White Matter Maturation

- Variable, occurs during adolescence in key tracts for emotion, behaviour, cognitions

Medial Prefrontal Cortex

Parts: - Anterior Cingulate Cortex (selective attention and motivation, implicated in depression/anxiety) - Dorsomedial Prefrontal Cortex (problem-solving, analyzing, other cognitive functions, possibly conveys "sense of self," altruism, theory of mind) - Ventromedial Prefrontal Cortex (processes emotions involved in moral reasoning)

Child Access to Care/Preventative Health

- Patient Protection and Affordable Care Act (2010) intended to expand access, reduce cost, and improve the quality of health for all Americans via several components: - Insurers can't exclude children from coverage b/c of pre-existing conditions - Extension of dependent coverage for youth up to 26 - State-based Health Insurance Exchange programs created to provide uninsured families with private insurance choices, including multi-state plans to foster competition and increase consumer choice

Categories/Indicators of Maltreatment

Inadequate food, clothing, or shelter Educational neglect Medical neglect Lack of supervision Inadequate guardianship Excessive corporal punishment Alcohol/drug misuse that affects ability to care for a child Abandonment Emotional neglect Malnourishment, listlessness, or fatigue Stealing or begging for food Lack of personal care (poor hygiene, torn/dirty clothes) Untreated need for glasses, dental care, or medical attention Frequent absence from or tardiness to school Child inappropriately left unattended or without supervision

Erikson's stages of psychosocial development

Infancy: Trust vs. Mistrust Toddlerhood: Autonomy vs. Shame and Doubt Pre-schooler: Initiative vs. Guilt Grade-schooler: Industry vs. Inferiority Teenager: Identity vs. Role Confusion Young Adulthood: Intimacy vs. Isolation Middle-Aged Adult: Generacy vs. Stagnation Older Adult: Integrity vs. Dispair

"Reasonable Efforts"

By state and federal law, child welfare organizations must: - Make reasonable efforts to avoid the placement of children in foster care - W/o explicitly defined by law, can include reaching out to relatives and arranging for preventive services - Permanency goals: If the goal is reunification with the child's biological parents, make reasonable efforts to avoid placement and enable the child to return safely home - If the goal is not reunification, make reasonable efforts to finalize the alternative permanency placement goal

Beauchamp and Childress's Principles of Medical Ethics (1979)

Four principles to judge and weigh against each other with attention to scope of application: Respect for Autonomy Beneficence (benefits vs cost) Non-maleficence (no harm) Justice ***Also in 1979, Belmont Reports outlined principles of respect for persons, beneficence, and justice as guidelines for responsible research using human subjects

Tuskeege Syphilis Study Problems

- 1932-1972 PHS/Tuskegee University study to observe the natural progression of untreated syphilis - Enrolled 622 African-American sharecroppers from Macon county (431 had previously contracted syphilis before study began, 169 did not have disease) - Men received free medical care, meals, and free burial insurance for participation - Men told they had 'bad blood,' not informed of syphilis diagnosis - Men told study would last 6 months but continued for 40 years, men not informed they would not be receiving treatment after funding for treatment was lost - 1947: Penicillin became standard treatment for syphilis, rapid treatment became available but no treatment provided - By end of study, 74 alive, of original 399 subjects (28 died of syphilis, 100 dead of related complications, 40 wives infected and 19 children born with congenital syphilis)

Informed consent

- 1950s-60s: traditional duty to obtain consent evolves into new, explicit duty to disclose certain types of info and then to obtain consent, creating expression informed consent - Landmark cases incl. Salgo v Leland Stanford Jr. University Board of Trustees (1957), Natanson vs Kline (1960) - Nuremberg Code (post Nuremberg trials, condemning experiments as crimes against humanity) served as model for professional/gov't codes surrounding patient consent for experiments/research Physicians should: - Assess patient's ability to understand relevant medical info, implications of treatment alternatives, make an independent, voluntary decision - Present relevant information accurately/sensitively, being mindful of cultural, language, other accessibility barriers - Document informed consent convo and patient's or surrogate's decision - In emergencies where patient/surrogate cannot consent, physicians can initiate treatment w/o consent - Patient has right to refuse any treatment at any time

Belmont Report

- 1979 (aftermath of Tuskegee Experiments) by National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research (now DHHS) - Guidelines for research with human subjects - Respect for Autonomy: Protect patients right to informed consent (provide relevant info, conduct capacity assessments), take extra precaution that vulnerable groups (prisoners, children, disabled, poor, etc.) aren't exploited or coerced into participation - Beneficence/Non-maleficence: physician's duty to help and not harm the patient, maximize benefits and minimize risks (benefits to participants, affected populations, society with risks) - Justice: burden of risks and benefits should not fall disproportionately on those most vulnerable, benefits of study should be equitably distributed (don't make prisoners/disabled subjects for risky/intrusive research, ensure that participants (esp. poor participants and participants in developing world) have access to the same quality of care that they do during the study when the study is finished) Belmont Report was codified in 1981 Common Rule, updated as recently as 2017: - Revised, but remains the central body of regulations protecting human subject research - Reliance on informed consent and review by institutional review boards (IRBs)

Justification for adolescent independently consenting to HPV (human papillomavirus) vaccination and potential consequences

- 2/3s of STIs diagnosed among 15-24-year-olds each year are HPV - Often asymptomatic/generally harmless but, if left undetected/untreated, can lead to cervical and other cancers - Vaccinations currently available to prevent types of infections likely to cause cervical cancer, CDC recommended to all adolescents ages 11+ - HPV vaccination coverage has been improving and as of 2017, 69% of females and 63% of males aged 13-17 had received one or more doses of the vaccine - Numerous studies have confirmed increased HPV vaccinations result in significant declines in HPV infections and related negative health outcomes - No legal consensus/universal framework in US to allow adolescents to self-consent to the HPV vaccine - Every state has laws allowing minor consent to diagnosis/treatment of STIs, laws are less clear w/ prevention - Some states address this gap w/ laws which explicitly permit adolescents to consent to confidential services for prevention of STIs, including the HPV vaccine

Sexual Behaviour (Adolescence)

- 2016: young people aged 13-24 accounted for an estimated 21% of all new HIV diagnoses in the United States, with most occurring among 20-24 year olds - Half of the nearly 20 million new STDs reported each year are among young people aged 15-24 - Teen birth rates are currently at their lowest recorded levels - YRBS measures sexual activity, numbers of sexual partners, use of condoms, and use of effective hormonal birth control

US Sexual Education (National)

- 22 States and DC mandate sex ed/HIV education., 2 states mandate sex ed only, 12 mandate HIV ed only - In 2011-2013, 82% of females and 84% of males aged 15-19 received formal instruction about how to say no to sex, and 60% of females and 55% of males received instruction about birth control methods - In 2016, median share of schools per state that provided instruction on all 19 topics that the CDC considers essential to sex ed was 38% of high schools and only 14% of middle schools - Share of schools providing sex ed declined between 2000 and 2014, across many topics - As of 2017, under 7% of queer students ages 13-21 reported school health classes including positive representations of LGBT-related topics - Parents are another possible source of sex ed ifor young people, in 2011-2013, approx. 70% of males and 78% of females ages 15-19 reported talking w/ parents about at least how to say no to sex/methods of birth control/STIs/where to get birth control/how to prevent HIV infection/how to use a condom - Digital media offer opportunities for confidential sex ed, increasingly being used to sexual health interventions for young people.

Single Parent Households

- 34% of US children live in single parent homes (66% Black, 42% Latino, 24% Whites, 16% Asians) - Children at greater risk of severe morbidity and other diseases, single moms/kids twice as likely to live in poverty as general population Single mothers More likely to have unmet healthcare needs, less likely to have employer-sponsored health insurance, more likely to forgo prescription meds/dental care due to cost Single Fathers Less disadvantaged, higher odds of missing regular check-ups, higher odds of having common cold or a medical condition requiring medication for 3+ months - Children raised by single parents are at risk for a variety of health conditions - Do not have easy or reliable access to healthcare at all times - Other health care needs to consider such as anxiety, depression and suicidal thoughts

"New Jane Crow"/Implicit Bias

- 83% of CPS referrals in Chicago for maltreatment were black/Hispanic, 90% publicly insured - Systematic oppression of children and mothers

Social Acceptance/Rejection

- Adolescent self-reports of sensitivity to peer acceptance/rejection are higher than those of children and adults - Peer evaluations are most important to adolescents for determining self-worth - Social exclusion activates similar brain regions as experience of physical pain, adolescents reports more distress during social exclusion than adults - During social exclusions, adolescents show decreased activity in regions of the prefrontal cortex than during social inclusion - Social rejection may remain stable over time and lead to isolation, loneliness, internalizing mood disorders like anxiety and depression

Sexual Health/Reproductive Care and Minors

- All 50 states and DC allow minors to independently consent to STI services, 32 states allow consent to HIV testing/treatment - The CDC reports that young people aged 15-24 account for half of the 20M new cases of STIs in the United States annually, which reflects biological differences as well as likely age-based disparities in accessing preventive information and services - Young Black and Hispanic men who have sex w/ men are disproportionately affected - Chlamydia accounts for nearly 20% of all STI diagnoses each year among 15-24-year-olds, herpes/gonorrhea/trich are 11%, HIV/syphillis/Hep B are est. - 1%)

Cognitive Bias Types

- Anchoring bias: using pre-existing data to influence decision-making - Availability bias: jumping to a diagnosis that comes to mind quickly - Blind obedience: showing undue deference to authority or technology - Confirmation bias: looking for clues to support a suspected diagnosis - Diagnostic bias: pushing forward diagnoses from previous encounters without evaluation of their goodness of fit with current presentation - Framing effect: the way a patient is presented to influences diagnosis - Omission bias: tendency to judge harmful actions as worse than inactions - Overconfidence: belief that one knows more than one actually does - Tolerance of risk: how much risk a physician is willing to take on - Satisfying bias: tendency to stop when a satisfying outcome is found Remember: ACAB FOOT DS

Sex and Gender Definitions

- Assigned Gender ("Sex") is assignment at birth based on genitalia and other physical characteristics - Gender is public (usually legally recognized) lived role, factors combined w/ social/psychological factors contribute to gender development - Gender ID is part of social ID, refers to individual based on deeply held core sense of being male, female, both, neither, etc. - Gender expressions involve outward conscious/subconscious communication re: clothing, appearance, mannerisms, may not reflect sexual orientation/gender identity - Transgender is broad spectrum of individuals who transiently/persistently identify with a gender different from theirs assigned at birth - Gender expansiveness conveys wider, more flexible range of gender identity/expression than typically associated w/ binary gender system, can include genderqueer, gender fluid, gender atypical, gender non-conforming, non-cisgender, and others

Sexual Minority Youth

- At greater risk of experiencing some sexual behaviors, less likely to use a condom, to use effective hormonal birth control, or to use both a condom and effective hormonal birth control - Greater risk for high-risk substance use, including using select illicit drugs, injecting illegal drugs, and misusing prescription opioids - Greater risk of experiencing mental health issues, including feeling sad or hopeless, seriously considering attempting suicide, making a suicide plan, attempting suicide, and being injured in a suicide attempt

Harm principle and Best interest standard

- Best Interest Standard (historical standard of care that asserts physicians' and surrogate decision-maker's responsibility to maximize benefits and minimize harm in treatment and decision-making) - Harm Principle (Identify a harm threshold below which parental decisions will not be tolerated, outside intervention needed to prevent harm to the child)

Brain Development

- Brain development begins in utero - Neurons proliferate, migrate, and differentiate -- - Synapses form rapidly b/w 2nd trimester through age 10, peaks at 2 years (known as "arborization") - Synapses that receive support from "growth factors" during adolescence live, weaker ones are "pruned," die via apoptosis - Two periods: early childhood, adolescence

Elements of the Nuremberg Code

- Came out of Nuremberg Trials (1946-7), 23 defendants (Nazi doctors), tried for conspiracy, war crimes (medical experiments on POWs/no consent, planning performing mass murder), crimes against humanity, membership in criminal org 1. Voluntary consent of human subject is essential 2. Yield fruitful results for the good of society, unprocurable by other method 3. Designed and based on the results of animal experimentation and a knowledge of the natural history of the disease 4. Conducted to avoid all unnecessary physical and mental suffering and injury 5. No experiment where there is an a priori reason to believe death or disabling injury will occur 6. Degree of risk should never exceed humanitarian importance of problem 7. Proper preparation and facilities to protect the subject against even the remote possibility of injury, disability, or death 8. Experiment conducted only by scientifically qualified persons 9. Subject has the right to bring the experiment to an end at any time 10. The scientist in charge must be prepared to end the experiment at any stage

Limitations of Terminally Ill Pediatric Participation in Decision-Making

- Capacity to make informed decisions, as well as to express preferences, varies with age and individual child (children' don't develop evenly - In certain cases, terminally ill children may lose cognitive functioning as a result of their illnesses, limiting their ability to participate - Unlike older patients (who may have a will, power of attorney, have lived a life where surrogates can understand their value system and likely decisions) children do not yet have a fully-formed sense of who they are, their worldview, and what is important of them. This isn't to say that their perspective doesn't matter, but parents cannot always look to the child's life or their experience with the child as "what would the child want" - Even with an incomplete understanding, shown in one of the readings that children can express reasonable, justifiable preferences about their care - Children's personal value system (religion, morality, worldview, etc) may differ from that of their parents - Children may be afraid or unwilling to communicate their thoughts with their parents, for their own sake or their parents' sake - In some cases, patients may feel coerced because: they wish to avoid family tension and conflict with parents; they respect parental judgment and feel that parents know more about these matters; or they feel a need for parental support, emotionally, physically, and/or financially

Childhood and Adolescent Mortality

- Child injury death rates have declined over the past several decades (50-60% b/w 1980 and 2013), incl. significant reduction in deaths over last decades for adolescents ages 15-19 - Race/ethnicity are strong determinants across age span (2013, black non-Hispanic children had the highest overall death rate compared to all other racial and ethnic groups, Asian/Pacific Islander children had lowest death rates) - Most common deaths are from automobile crashes/firearm deaths, fewer for women than men, white non-Hispanic teens highest rate of automobile death, Black non-Hispanic teens highest rate of firearm-related death

Physicians as advocates

- Clinicians can diagnose disparities, innovate new models to address health disparities in communities - Cultural humility, workplace equity - Screening for new health "vital signs," connecting families to resources, moving care outside the office into the community - Integrate the principles of child health equity (eg, children's rights, social justice, human-capital investment, and health-equity ethics) into their practices. - Use individual clinical encounters as opportunities to screen and address the social, economic, educational, environmental, and personal-capital needs of kids/families - Use principles of child health equity for child advocacy/policy development. - Raise awareness of the relevance of social and environmental determinants to children's health/well-being in their communities among legislators

Diagnostic Errors

- Compromise patient safety, quality of care, account for paid malpractice claims - Most common in family medicine, internal medicine, emergency medicine, urgent care (15% error rate) due to elevated case complexity, need for rapid - More common in outpatient than inpatient settings - Cognitive biases can influence decision-making, lead to errors Types of errors: - No fault errors: a disease is misdiagnoses as something more common, disease is silent or presents in an atypical manner, patient non-adherence to recommended care/testing - System errors: latent failures in process of delivering care, ex. lack of proper equipment, testing, faulty equipment/tests, poor patient care coordination, understaffing, under-training - Cognitive errors: individual perceptions/decisions influencing views and actions in a manner which defies reason leads to incorrect diagnosis

Adverse Effects of Maltreatment

- Compromises across virtually every domain: cognitive, language, socio-emotional, and neurobiological development - Increased risk of psychopathology - Mental health problems among most salient sequelae of child abuse and neglect National - Survey of Child and Adolescent Well- Being: nearly half (48%) of 3,803 children (2-14 years old) who had completed child welfare investigations had clinically significant emotional or behavioral problems, maltreated children nearly 3x more likely to be diagnosed with an internalizing or externalizing disorder - Population est. attribute approx. 43% childhood psychiatric disorders due to experiences of adversity, including abuse and neglect, suggesting that there may be no single greater environmental predictor of mental health difficulties than experiences of maltreatment - Environmental circumstances needed to in order to meet diagnostic criteria for some disorders, trauma is required for post-traumatic stress disorder (PTSD) and inadequate care is a necessary criterion for reactive attachment disorder - Diverse forms of maltreatment that have different consequences for brain development but may result in risk for the same forms of psychopathology (eg, both abuse and neglect are associated with increased risk for externalizing psychopathology). - Several factors may be protective and promote resilience in children who have faced adversity individual factors (genetics, temperament) and external factors (consistent and attentive caregivers) - Impairments in functioning (academic problems, delinquency, and difficulties in social relationships) associated with maltreatment

Systems Issues w/ Legal System (Abuse/Neglect)

- Courts concerned known as/incl. juvenile court, family court, dependency court, etc - Larger jurisdictions may have full-time judges, sometimes judges in smaller jurisdictions hold many roles - Judges are "triers of fact," make ultimate decisions re most phases - Judges' perspectives derive from US Constitution, especially the due process clause of the 14th Amendment, which has been used to limit government interference in family life. - As an initial assumption from a legal perspective, parents are presumed by courts to have their children's best interest guiding their parenting behavior. - Most laws re: gov't intervention restricts to physical safety is endangered, judges often inclined to return children/eliminate state involvement at earliest indication that parents can are minimally safe, - Alternate efforts aim to delay return until it is clear that parents are sufficiently rehabilitated so that risk of recidivism is minimized - Courts in all 50 states must consider whether decisions are in the child's "best interest" - Although the best interests of the child are considered, they generally do not trump parental rights in cases in which those conflict, especially for medical decision-making

Indicators of Physical/Sexual Abuse

Physical - Injuries to both sides of head or body, frequently appearing injuries esp. unexplained - Distinctive patterned injuries (grab marks, human bite marks, cigarette burns, impressions of instruments) - Child is destructive, aggressive, or disruptive, passive/withdrawn, emotionless, fears going home/fears guardians Sexual - STD symptoms - Genital injuries, difficulty or pain sitting/walking - Sexual/inappropriate behavior or verbalization - Expression of age-inappropriate knowledge of sexual relations - Sexual victimization of other children

Systems Issues w/ CPS

- Distinct divisions resp. for hotline receipt of allegations, investigations of alleged maltreatment, services to families, foster care placement, adopted children/adoption - Foster care may be provided by CPS or contracted privately - Based either at state or county level, originated on children's physical safety - Historic shift b/w primary emphasis on protecting children, another on preserving families - In cases of substantiated maltreatment but no immediate termination of parental rights, emphasis on time-limited opportunities for parents to rehabilitate, resume unencumbered care of their children - Reunification is general goal currently, hinges on demonstration of minimal safety and caregiving effectiveness - Child well-being has been made explicit Federal priority impetus for mental health services, but well-being is newer and less integrated in many settings

Clinical Trial Phases

- Drugs are developed by pharmaceutical companies - Once a company discovers a molecule that might become an effective drug, they test it on animals to gather basic information about toxicity, safety, and efficacy - After several years of data-gathering, the company submits an application to the FDA in order to test the drug on humans ***"Investigational treatment" or "experimental treatment," medical treatments in the process of being studied to determine safety and efficacy prior to/without FDA approval - Approval process involves 3 phases of clinical trials (conducted by physicians at medical centres and other sites, funded primarily by pharma companies who invest billions into each new drug), takes several years, approx. 1/10 of drugs complete the process and gain FDA approval - Phase 1: basic safety, such as determining the maximum tolerated dose and likely side effects, smallest studies of all three phases (sub 100), 90% of drugs that begin this phase eventually turn out to be unsafe/ineffective - Phase 2: effectiveness, several hundred patients w/ relevant disease/condition involved, randomized controlled double-blind, - Phase 3: further safety/effectiveness, several thousand patients, compare to FDA-approved drugs or placebos (more often used), study in different doses or combos w/ other drugs, randomized controlled, double-blind (patients/doctors don't know which is placebo or drug) Approval: - Considering course of illness, existing treatments, risks and benefits of drug, how to manage/detect risks, monitoring continues after approval (Phase 4) - Relevant Phase 4 example is AZ vaccine blood clots Exceptions: - Expedited approval for potentially life-saving drugs, developed 1992, used for AIDS/cancer drugs, COVID vaccines, others

Adolescent Sexual Development Stats

- During adolescence, many young people engage in a range of sexual behaviours and develop romantic and intimate relationships - Masturbation is a common behaviour, approximately half or just less than half of adolescents ages 15-19 surveyed in 2015-17 have had penile-vaginal or oral sex with a different-sex partner, proportion of sexually active adolescents increases with age - Among young people ages 18-24 (surveyed 2015-17) who had penile-vaginal sex, 70% of males described first experience as wanted, 51% of females had mixed feelings/45% wanted - Among young people ages 18-24 (surveyed 2015-17), 13% of females and 5% of males experienced forced vaginal sex - Most adolescents use contraceptives at both first sex and most recent penile-vaginal sex, condom is most common contraceptives, older adolescents are more likely to use prescription methods and condom use becomes less common w/ age

Elements of Palliative Care (Pediatric)

- Each year, 500,000 children in the United States cope with life-threatening illness - Children/families require comprehensive, compassionate, and developmentally appropriate palliative care - Paediatric palliative care is interdisciplinary, collaborative, seeks to improve quality of life for children and their families - Focused on prevention/relief of suffering regardless of disease stage, comprehensively addresses physical/psychosocial/spiritual needs of child and family Prerequisites: - Interdisciplinary team - Communication and building relationships (parents, talking to children, spirituality, hope) - Developing care plans based on goals, medical decision-making and goals of care (resuscitation and life-sustaining measures) - Coordination of care

Dopamine and hormones as related to adolescent development

- Enhanced dopamine release starting in early adolescence and peaking midway through - Research suggests baseline level of dopamine is lower but its release in response to experience is higher - Increased drive for reward, likely via improving salience - Impulsivity - Increased susceptibility to addiction - Hyper-rationality Testosterone - tunes youth into need for affiliation and social success, achieving status Oxytocin - increase empathy and trust for those 'in' peer group, and aggression toward those 'out' of group

Key Cultural/Religious Concepts

- God, gods, and the Sacred - Sources of doctrine: 'books' (Scripture), Tradition, authority ('Magisterium') - Cosmology and anthropology - Social community, inter-dependence, solidarity, and charity - Reason and faith. Truth and tolerance. Conscience and freedom - Body and soul. Mortal life and afterlife. Meaning of suffering. - Sin, damnation, impurity - forgiveness, redemption, purification - Order and unity in the cosmos: "Natural law" - Consistence in personal's moral private and public life. Virtue and holiness. Where is this relevant? - Beginning of life and personhood: abortion, infanticide, prenatal diagnosis, embryonic research, people with disabilities, human dignity and rights - Sexuality, reproduction, and gender: contraception, sterilization, assisted reproduction, transgender care, eugenics - Conscience and tolerance: objection of conscience - Free will and autonomy: involuntary measures - End of life care: palliative care, euthanasia, assisted suicide - Physicians' moral integrity - Other: vaccines, blood transfusions, transplantation, justice and health access

Pediatric Health Disparities

- Health incl. complete physical, social, and mental well-being, not absence of disease - Influenced by social, economic, and environmental factors in context of community, individual behaviors, biology. - Differences in adverse health outcomes for specific health indicators across sub-groups of the population - Driven by social determinants incl. race/ethnicity and income, but also access to care, housing instability, food insecurity, geography, transportation, and the built environment - Complex issue influenced by the ability of families with children to meet their basic needs and secure an adequate level of shelter, nutrition, and health care., influenced by poverty-related outcomes (marital conflict, violence, psychological distress, depression, and low self-esteem) - Epidemiology needs to be examined from perspective of adverse health outcomes and the disproportionate burden it places on minority families.

WIlowbrook Experiment

- Hepatitis studies w/ 700+ mentally disabled children for 15+ years (1950s,60s)at Willowbrook State School in Staten Island, conducted by Dr. Saul Krugman from the NYU School of Medicine - Hepatitis wasmajor problem for patients and staff, Krugman believed most newly admitted children became infected within the first year of residence, though more recent estimates est. 30-50% risk - Hepatitis A is a relatively mild disease affecting the liver, w/ symptoms including jaundice, fatigue, abdominal pain, loss of appetite, nausea, diarrhea, and fever, usually spread via fecal or oral transmission - Known at the time that the response to infection was milder in younger children, once infected, children were protected against the more damaging forms of hepatitis, so Krugman was interested in using gamma globulin antibodies (taken from the blood of hepatitis patients) as a way to create immunity in others - Antibodies are produced by the body's immune system in response to foreign substances, so Krugman thought that if a child was infected with hepatitis after being injected with these protective antibodies, a mild case of hepatitis would result, and the child would have long-lasting protection against future, potentially more serious, infections. Studies: - Researchers injected some with protective antibodies (the experimental group) and did not inject others (the control group), then observed the children's degree of immunity to hepatitis. - In another series of studies, researchers gave newly admitted children protective antibodies, a subset were deliberately infected w/ Hepatitis, those w/o antibodies were controls, these children were housed in better conditions than the rest of the institution - As studies progressed, researchers noticed differing symptoms caused by different virus samples, concluded that there are 2 strains of Hepatitis (A, B), A is more transmittable, B is more difficult b/c of blood/sexual contact transmission

Medical Bias

- How biases are fostered: training promotes more weight to group-level info, realities of clinical practice (time, pressure, etc.) can foster use of biases, knowledge base can give medical professionals false sense of objectivity - Types: cognitive (individual perceptions influencing views and actions in a manner which defies reason), implicit bias (attitudes and beliefs we have about a person or group on an unconscious level that contrast with expressed beliefs), explicit bias (attitudes and beliefs we have about a person or group on a conscious level) - Implicit biases can contribute to health disparities, impair clinical decision-making, affect patient perceptions, patient outcomes Overcoming bias: stepping back and reflecting to consider if a bias exists, developing rules and mental procedures to reject a reflexive automatic response, developing mental techniques to uncouple from recognized/recurring bias

Institutional Review Board

- IRBs review research methods, protocols to ensure they are ethical, protect human subjects from harm - Protocol review: ethics of research and methodology, promotes fully informed, voluntary participation by prospective subjects, seeks to maximize safety of subjects - In US, the FDA and DHHS empower IRBs to approve, require modifications prior to approval, and disapprove of research and also provide ongoing oversight of research conduct - IRBs used for research in studies of health and social sciences including clinical trials of new drugs or devices Paediatric IRBs: - Paediatric studies entailing risk higher than minimal can be approvable by the IRB only if those risks are balanced by a commensurate direct benefit (incl. randomized clinical trials with or without placebo arms, device trials, or research involving randomization of any intervention) - The idea of direct benefit is crucial b/c the distant benefit of a new drug approval that could help the participating child or the social benefit of advancing science in general cannot be invoked as a risk balancing benefit - IRBs can approve research w/ no direct benefit (non-beneficial research) when entailed risk is slightly above the minimal-risk threshold, AKA minor increase over minimal risk and IRBs decide what constitutes "minor increase" in a given protocol (requires participants to suffer from condition under study, 2 parents sign consent, for ex. pharmacokinetic studies requiring an approved medication for a short period (too short to produce benefit) or a CT scan in a cystic fibrosis cohort study) - IRBs may have to consult experts/require the investigators to provide rationale in support of a minor increased level of risk. Minor increase over minimal risk may not be permitted in healthy control randomization arms.

Why Health Disparities Matter

- If all children had the same risks of adverse outcomes as those of the most economically privileged, the prevalence of poor outcomes (eg, low birth weight, cerebral palsy, intellectual disabilities, psychological problems, child abuse, disabilities attributable to intentional and unintentional injuries) would be reduced by 60% to 70%. - Lead to disparities in adult health/well-being, chronic illness, intergenerational poverty, ill health (obesity, diabetes, cardiovascular disease, poor educational outcomes, unemployment, poverty, early death, etc). - Costly to health care systems

Herd Immunity

- If at least 90-95% of a population is vaccinated, "community immunity" will occur, above this threshold, it is considered that community transmission will be unlikely - Those w/ medical conditions who require medical exemption from vaccinations rely on herd immunity to stay safe

How Vaccines Work

- In response to an infection with an "antigen," B cells secrete antibodies, which attach to antigens and label them for destruction by T cells - Afterwards, they leave behind "memory B cells," which are ready to respond again - In a vaccine for a disease, an "attenuated" antigen is attached to an adjuvant (aluminum salts, etc.), which triggers an immune response - This leads to the generation of memory B cells against the disease ***Vaccination is estimated to: Prevent 42,000 early deaths Prevent 20 million cases of disease Save society 68.8 billion dollars

Limbic System

- Incl. several structures, like amygdala (in charge of emotions and emotional responses) hypothalamus (controls endocrine/hormone system) these can help explain why teens can be moody or have emotional outbursts - Begins developing before prefrontal cortex but continues developing in adolescence - Changes in serotonin and dopamine levels make adolescents more emotional, more responsive to rewards and stressors, more easily bored, more reckless

Limits of confidentiality around sexual/reproductive health care

- Infectious diseases, injuries/diseases caused by weapons or crime, child abuse, elder abuse - Confidentiality means: info about care is not disclosed w/o permission Why should information about an adolescent's sexual health care be kept confidential? - Teens are less likely to seek/obtain care w/o confidentiality, exposing greater population to STIs, pregnancies, can also help foster adolescent autonomy Legal limitations: - Child abuse (mandatory reporting), other communicable diseases (public health), imminent risk of harm to self/others (mental health) Practical limitations: - Billing practices for insurance reimbursement - Follow-up calls/communications for test results - Accidental disclosures by clinical/clerical staff - Privacy challenges posed by electronic medical records, summaries, reminders, etc.

Corpus Collosum

- Largest white matter (neurons covered by myelin) tract in the brain - Connects left/right hemisphere, enables info to "get across" to other side - Connections associated w language and language learning, connections grow before/during puberty and stops soon afterwards, that's why learning a second language is much easier in childhood than adulthood

Mature Minor Doctrine

- Less than one-fifth of the states (8) have a broad mature minor exception to the standard requirement of parental consent - Minors can legally make decisions re: sexual health/contraception, mental health/substance abuse prevention and treatment (varies by state) - Adolescent medical needs are unique to their stages of rapid physical development, but evolving neuropsychological maturity poses moving target for evaluation of their ability to engage in, and supervise, their own health care - Un-emancipated minor may gain right to choose/reject certain healthcare treatment like SOME mental health/drug and alcohol treatment, sexual and reproductive healthcare (sometimes w/o knowledge, agreement of parents, formerly seen as protecting health care providers from criminal/civil claims by parents of kids 15+, now generally considered form of patients' rights) - "A minor who has sufficient autonomy or intellect to provide informed consent for medical care" - Depends on whether a minor is "mature" enough to make a medical decision, may be affected by his/her age and developmental level, severity of the illness, risk/benefit profile of the treatment

Hippocratic oath (modern)

- Louis Lasagna, 1964 - No deity, respect physicians before him and share knowledge - Avoid "twin traps of over treatment and therapeutic nihilism" - Warmth, sympathy, understanding as important as medical skill - Not afraid to admit lack of knowledge or ask for help - Respect privacy - Be careful in matters of life and death, don't play God, be mindful of whole person in patient - Aim for prevention rather than cure - Acknowledge your obligations to society

Emancipated minor

- Minor whose parents have entirely surrendered right to care, custody, decision-making, and other parental rights - Currently, 28 states have statutes allowing minors to petition for emancipation - Minor can enter into legally binding agreements (leases, contracts), sue/be sued, make healthcare decisions on their own, support themselves financially - That said, emancipation doesn't necessarily terminate parents' financial responsibility to support child - May be married, in the armed forces, economically independent, or be emancipated due to issues of abuse/neglect/maltreatment

Frontal Lobe

- Motor Cortex (voluntary movements) - Prefrontal regions (responsible for higher order executive functions ex. thinking, planning, organizing, strategizing, attention, controlling impulses, regulating emotion/behaviors)

Capacity assessment

- Must take into account cognitive, affective aspects of reasoning, how they evolve in adolescence - Must acknowledge that adolescents exercise different levels of rational/mature judgement in "hot" and "cold" contexts - Ex MacCat-Treatment (assess understanding of different facets of situation, evaluate reasoning about present situation, health condition, therapeutic options, assess deliberation on various options, ensure patient can express a choice in verbal/written form) - Should ideally be run on more than one separate occasion, gain insight on how adolescent may be influenced by parents/relatives/peers, deliberate among team of doctors if necessary - Decision-making capacity is not fixed, dependent on circumstances, it's the role of the provider to "empower" patient in their decision-making capacity BIG POINTS: Communicate a choice, Understand the relevant information, Appreciate the situation and its consequences, Reason about treatment options

Child Removal (NY)

- NY FCA § 1028 "In determining whether temporary removal of the child is necessary to avoid imminent risk to the child's life or health, the court shall consider and determine in its order whether continuation in the child's home would be contrary to the best interests of the child and where appropriate, whether reasonable efforts were made prior to the date of the hearing to prevent or eliminate the need for removal of the child from the home and where appropriate, whether reasonable efforts were made after removal of the child to make it possible for the child to safely return home." - Consent must be sought from a child's parent (if parental rights have not been terminated/surrendered) - If parent refuses or cannot be located, ACS/foster agency can provide consent in some instances - If parental rights have been terminated/surrendered, ACS acts as the child's medical decision-maker (or, ACS may delegate this responsibility to the Executive Director of a child's foster care agency)

Mandated Reporting Requirements

- New York SSL § 413 "Persons and officials required to report cases of suspected child abuse or maltreatment," incl. health care professionals, social workers, therapists school officials/teachers, day care providers, police officers, and others - Must call New York Statewide Central Register of Child Abuse and Maltreatment (SCR) - If a mandated reporter does not report his/her suspicions, he/she may face prosecution or fines - SCR "accepts" or "rejects" the case, if accepted, ACS/CPS investigates and allegations deemed unfounded/indicated, ACS/CPS required to provide services

Medical Structural Racism

- Operates at multiple levels, personally mediated by those in power, internalized by those who are being discriminated against. - Normalization of an array of historical, cultural, institutional, and interpersonal dynamics that routinely favor racial majorities (in the USA, white people) while producing cumulative and chronic adverse outcomes for minorities (in the USA, people of color and especially African Americans). - Potent factors leading to global inequities in all major indicators of success/wellness - Perpetuated when policies instituted w/o examining changes that may reinforce or compound existing inequities and health disparities.

Characteristics of adolescent development and related benefits

- Overall growth and development is uneven - Increase in myelination (myelin increases speed of communications between neurons), especially in places associated w/ higher order functioning - Increase in brain volume in early adolescence, shrinking in late adolescence - Synaptic pruning (arborization, important synapses are maintained and inefficient/useless ones pruned (apoptosis)) - Synapses that receive support through environmental "growth factors" are retained through adulthood, so learning a language/building good habits/etc in adolescence is essential (also since neuroplasticity declines as we age - Also part of why the music we like in adolescence is the music we like in adulthood (combo of intense emotional responses in adolescence and synaptic pruning) - Legal implications (since decision-making capacity varies from teen to teen, from context to context, over time, etc) call into question whether teens should be charged as adults, incarcerated w/ adults, sentenced to death, be able to enlist in armed forces, buy a gun, get their drivers license, and more

Prognostic Disclosure

- Perpetually challenged clinicians/parents, esp. with regard to cancer - Before 1948, virtually no literature focused on prognostic disclosure to children, articles began being published in 1950s-60s, clinicians/researchers initially recommended "protective" approach, shielding children from harms of bad news - Late 1960s, growing number of clinicians/researchers pro-"open" approach, children included in discussions of diagnoses, often synonymous w/ terminal prognosis - Late 1980s, recommended approach changed from never tell to always tell, in recent years, growing appreciation for complexity/nuance Arguments for protective: Potentially inaccurate diagnosis, undue suffering and harm, sick children don't want info or repress awareness to cope w/ anxiety, disclosure could upset family structure Arguments for open: Children already know they are ill or dying, great effort is required to maintain facade, which can fall apart, open/safe/honest environment can provide better support

Mental Health and Suicide Variables

- Poor mental health can result in negative outcomes, incl. risky sexual behavior, illicit substance use, adolescent pregnancy, school absences/dropout, and other delinquent behaviors - YRBS measures persistent feelings of sadness/hopelessness, suicidal ideation, attempts

Justification for adolescent independently consenting to PrEP and potential consequences

- Pre-exposure prophylaxis (PrEP), a daily pill that protects against HIV, gained FDA approval for use among adolescents in May 2018 - In one case study, PrEP was found safe and well-tolerated, but adherence waned among teens, which increased STI/HIV-related infection risks, researchers concluded that monthly monitoring may be needed for adolescent adherence - Adolescent men who have sex with men who are at risk of contracting HIV should be offered access to PrEP with appropriate support to maintain adherence Pros of independent consent: - Closeted teens, teens w/o adequate parental support can access PrEP more easily Cons: - Potentially no support/monitoring for side effects, adherence from parents

Attending to the "voice of the child"

- Presumed that parents want, and are expected, to act and decide in the best interest of their child, but recent qualitative study indicated parental difficulties doing so - Comprised of 37 interviews conducted with 34 parents of 17 children w/ incurable cancer, in at-home palliative care Observations: - "Voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions, parents who actively searched to understand child's perspective used direct and indirect strategies - Indirect strategies preferred by parents when children avoided talking or convo was threatening for child/parents - Parents can struggle to acknowledge child's perspective, despite intense involvement in care/support, in large part due to parent's own struggle to cope w/ loss - Whether or not voice of child is heard depends on parents ability to give them a voice, and HCPs should support parents as they give children their voice while preserving child/parent's ability to cope

Grey Matter Maturation

- Proceeds in "back to front" fashion - "Thickening," neuron proliferation and synaptogenesis - "Thinning," "pruning" of synapses

Prefrontal Cortex

- Responsible for higher order thinking, doesn't stop developing until early 20s (may explain poor teen judgement) - Impacted by social exclusion/inclusion (decreased activity during exclusion) - Medial Prefrontal Cortex incl. anterior cingulate cortex (selective attention and motivation, implicated in depression/anxiety), dorsomedial prefrontal cortex (problem-solving, analysis, cognitive functions, possibly "sense of self"), ventromedial prefrontal cortex (processing emotions involved in moral reasoning) - Orbital prefrontal cortex involved in emotional arousal, rapid processing of emotional information

Child Abuse/Neglect

- Risk factor for concurrent and subsequent psychopathology, later health morbidity, compromised development. - In severe cases children are often placed in foster care, as a group are at particularly at high risk for negative mental health consequences ***Clinicians working with children must focus on symptom patterns and functional impairment and also understand the systems in which maltreated children are entwined - CPS/legal system both influence physical placement and well-being of children who have experienced abuse and neglect - Clinicians may be asked and should be willing to provide input regarding visits, transitions, custody, and related issues. Legal definitions: NY SSL § 412 ( "abused child" means a child under eighteen years of age and who is defined as an abused child by the family court act), ("maltreated child" includes a child under eighteen years of age: (a) defined as a neglected child by the family court act, or (b) who has had serious physical injury inflicted upon him or her by other than accidental means)

Shared Decision-Making

- SDM that is patient and family centered involves clinicians and patients working together to make decisions, depends on quality of communication b/w physician and decision-makers - Principles of SDM in practice require flexibility and care in eliciting cultural competence - Culture as shared values, beliefs, and behaviors - Culture may also include socioeconomic status, geographic location, education, community or family traditions - Cultural difference affects how patients receive information, express emotion, engender trust in providers and institutions, and the significance assigned to information ***Recommendations for providers to honor principles of SDM - Avoid self-referentialism - Beware of homogenization - Practice cultural humility - Cultivate self-awareness - Respect patient preference for SDM - Acknowledge moral relevance of culture

Mental Health Assessments for Abuse/Neglect Victims

- Safety, permanence, well-being of the child (ensure children are physically and psychology safe in their current placements, understand timeline of current placement/future placements) - - Well-being incl. psychiatric symptoms and functional impairment, adequacy of the caregiving environment, must be included in the assessment. - CPS needs multiple sources, physician speaking to case worker before/after, gain supplemental info, meet foster parents, biological parents, observe interactions - Assess for PTSD symptomatology in every child with a history of maltreatment, exposure to violence - PTSD in children can be challenging to identify, especially if children present with re-experiencing and hyper-arousal in the form of aggressive behavior (systematic inquiry about exposure to possible traumatic exposures is key, as well as assessing triggers of challenging behaviors) - Majority of maltreatment cases onset in kids under 5, younger kids esp. may be more symptomatic w/ one caregiver than another - Assessment should incl. history and developmentally modified mental status examination, relationship assessment between child and caregivers for young children who have been maltreated - Foster care is a different intervention for younger children (especially less than 3 years old but generally up to age 5 years) than for older children, quality of the young child's attachment relationships is a foundational component of young children's socio-emotional development and an important predictor of subsequent psychosocial functioning, especially w/ high-risk groups - Young children develop and sustain attachments through substantial contact with caregiving adults (foster parents may function as primary attachment figures for them)

Piaget's stages of cognitive development

- Sensorimotor (0-2 years) Use of senses to explore world - Pre-operational (3-7 years) Use of language, images, imagination - Concrete operations (8-11 years) Logical thinking about concrete events, use of classification and numbers - Formal operations (11-adolescence) Abstract thinking, hypothetical reasoning, mature moral reasoning

Parietal Lobe

- Sensory Cortex receives sensory input from the body - Dominant hemisphere processes language and reading, performs calculations, executes complex movements - Non-dominant hemisphere detects spatial relationships, enables activities like drawing figures and getting dressed

Children at Risk

- Severe/chronic poverty, racial/ethnic minorities, affected by drugs/alcohol, in foster care and public institutions, disabled/living w/ special health care needs, living w/ violence, incarcerated, homeless, immigrants/refugees, uninsured w/o access to care - Often co-occurring, children w/ multiple risk factors most likely to have rights ignored/abused (ex. violence against foster kids, medical discrimination, experience in judicial/juvenile justice systems)

Paediatric Research Assent

- Subpart D 408 regulates the consent process for paediatric research, est. assent requirement - Most IRBs require that the assent via written document signed by the child/adolescent after the parent has consented - Paediatric human research protection programs usually provide templates for developmentally appropriate assents, including a child assent for participants 7-11 years of age and an adolescent assent for participants 12-17 years of age. - Investigators/IRBs should consider: (1) the intellectual capacity of participants and (2) the magnitude of prospect of direct benefit. - The IRB could provide a waiver to the requirement of assent if the expected population under study is not capable of comprehending and signing assent documents, or grant waiver of assent if the anticipated benefit of the intervention is such that honoring dissent may jeopardize the life or health of the child

High-Risk Substance Use

- Substance use tied to various neg outcomes, incl. STDs, HIV - Drug use associated w/ HIV or overdose - Drug use is also associated with sexual risk behavior, experience of violence, and mental health and suicide risks

Hippocratic oath (classical)

- Swearing on Greek Gods - Reverence for teacher, impart lessons to students - Take utmost care of patients, ensure that they face no hurt or damage, administer no poison, incl. no abortions - No surgery, leave to cutters - Visit homes for convenience of patients, not for self-enrichment, refrain from lying, ensure equal quality of care for all classes - Be discreet

Conscientious objection and step away policies

- The refusal to perform a legal role or responsibility because of moral and other personal beliefs - Conscience clauses, describes the right of physicians and other health care providers to refuse to provide services - Step away policies, hold that health professionals who conscientiously object may not interfere w a patient's ability to obtain a medication, procedure, etc elsewhere, as opposed to step between - Allow health professionals and institutions to conscientiously object by referring a patient to another health professional/institution who doesn't conscientiously object to providing a given service, medication etc - Reflective equilibrium, dynamic process that allows professions to self-correct, reaching to a balance or social contract, yet establishes professional obligations that trump personal belief

Trauma-informed approach for sexually exploited youth

- They have complex legal, social, and medical/mental health needs, coordinated multiagency approach is needed: - Including: A comprehensive needs assessment of survivors, assuring safety and confidentiality, delivering trauma-informed care, providing comprehensive case coordination About trauma-informed services: - Recognized as a promising approach to providing care in systems like homeless shelters, juvenile justice system, and medical settings where sexually exploited youth may present for services - Characteristics: - Recognizing trauma symptoms, understanding impact on individual's life/coping, incorporates this understanding into practices to empower and avoid re-traumatizing individual Benefits: - Implementing a trauma-informed model of care can improve identification, diminish harm, enhance care of youth who have been sexually exploited and victimized

Violence Victimization (adolescence)

- Violence is a leading cause of death and nonfatal injuries among adolescents in the US - Associated w/ trauma, diminished academic success, sexual risk behavior, substance use, and risk of STDs, including HIV - YRBS measures of violence victimization related to safety at school, bullying, dating violence, and forced sex

Scope of Child Abuse/Neglect in USA

2016: approximately 676,000 children in US confirmed as victims of abuse and neglect by CPS systems, approx. 3.5M referred for potential maltreatment - Younger children more likely to be maltreated, more likely to die from abuse/neglect - American Indian/Alaskan Native and African American children experience highest rates - Widely underreported, failure of legal authorities to identify, infantile amnesia, challenges to measure, recall bias in retrospective reports - Recently, approx. 250,000 to 275,000 children placed in foster care annually, 400-500,000 children are in foster care at any time in the US - Majority with maltreatment substantiated stay w/ families, provide access to services designed to prevent removal ie family services, "in home" services, family preservation - Neglect is most prevalent by far, co-occurrence of different types is normal

Compassionate Use (Definition, FDA Approval) *** MAIN DIFFERENCE BW THIS AND RIGHT TO TRY IS THAT RIGHT TO TRY DOESN'T REQUIRE/INVOLVE FDA APPROVAL, AND HERE YOU CAN GET DRUGS IN PHASE 1 TRIALS WHEREAS RTT IS STAGES 2/3

1962 - The FDA established an informal process to approve access to investigational drugs on a case-by-case basis - Physicians could contact the FDA and request access for patients with severe illnesses and no other treatment options - However, in the 1980s, the HIV/AIDS epidemic brought mounting political pressures, 1987 FDA expanded national access to post-phase 2 trial drugs on compassionate basis - In 2009, the FDA updated its criteria for expanded access to include some drugs that had not yet completed phase 1 trials - Today, patients w/ life-threatening illnesses can ask FDA to try investigational treatments pre-approval, or w/o enrolling in clinical trials, approximately 99% of requests are approved although it requires approval from FDA and relevant IRBs

Youth Risk Behaviors

2016: In the US, 74% of all deaths among persons 10-24 years resulted from four causes: motor vehicle crashes (22%), other unintentional injuries (20%), suicide (17%), and homicide (15%) - Leading causes of mortality, morbidity, and social problems (e.g., academic failure, poverty, and crime) among youth are associated with 6 categories of priority health-related behaviors - Youth Risk Behavior Surveillance System: monitors behaviours contribute to unintentional injuries and violence, unhealthy sexual behaviors, alcohol/drug use, tobacco use, poor dietary behaviors, physical inactivity - CDC's Priority Health Areas: sexual behavior, substance use, violence victimization, mental health/suicide - Studies show: Increased numbers of sexual partners, lack of condom use, forced sex, or injection drug use can directly lead to infection. - Youth who are bullied, experience mental health problems/suicidal ideation more likely to take risks - Adolescents' misuse of prescription drugs is associated with having sex without a condom, having four or more sexual partners, and experiencing dating violence. - Substance use is related to sexual risk behavior and violence. - Adolescents who are bullied are more likely to have multiple sexual partners, have sex without a condom, use substances, and experience depression. - 2017 YRBS showed decrease in sexual activity, decrease of multiple partners, decrease in condom use, decrease of injected drug use/certain illicit drugs, no improvement in rape/forcible sex, increase in persistent sadness/hopelessness - Substantial health disparities among students based on sex, race/ethnicity, and sexual identity/same-sex sexual contact, esp among sexual minority youth

NYS Mental Hygiene Law

9.13 - voluntary admission to inpatient unit where guardian/patient consents, patient over 16 can sign themselves in against parents will, guardian can submit letter asking for discharge before clinician deems appropriate, this can go to court 9.40 - admission to POU (Pediatric Extended Observation Unit), can legally keep patient for up to 72 hours, status used to observe the patient, gather more information, and start treatment, after 73 hours either discharge or admit to inpatient, involuntary (parents/guardians don't need to agree) 9.39 - emergency status, if the guardian is unwilling/unable to sign the 9.13 voluntary papers, criteria are that the patient is an immediate danger to self or others and cannot be safely discharged, allows clinicians to admit for 15 days starting from the time of arrival in CCPEP (last option b/w we like guardians to agree) 9.27 - involuntary admission to inpatient unit, up to 60 days based on evidence that patient will harm selves/others if untreated

Modern/Evolving Medical Ethical Principles

Confidentiality Veracity (truth-telling) Dignity Apologizing, making amends Fairness

Relational autonomy

Contrast to "in control agent" model (prioritizing self-sufficiency in decision-making, highlights a decision-maker's capacity to have reason transcend one's emotional experience, aims to avoid influence of others/emotional persuasion in decision-making) - Surrogate makes decisions, limited adolescent participation, provider only provides medical expertise Relational autonomy (acknowledges central role of others, incl. clinicians, nobody is an island, everyone exists in relation to family, friends, dependents, etc.) - individuals' identities, interests, ends, and beliefs are fundamentally dynamic, continually constructed and reconstructed in dialogic processes with other people - For kids, emphasis on how medical decisions affect the family as a unit, acknowledging parents' need to balance best interests of child and needs of family - Surrogate can rely on trusted people, providers, respect autonomy/voice of adolescent, clinician can offer decision-making guidance - Clinicians should model how to give a child patient some level of control over medical care while acknowledging parents sense of responsibility

Minor Rights re: sexual/reproductive health around STI testing vs prenatal care and abortion

Current laws: - All states and DC allow young people to consent to STI services - Most states allow adolescents to independently consent to sexual health care, incl. treatment/testing for STIs, contraception/pregnancy counselling, pregnancy tests/prenatal care, sexual assault counselling/treatment - Can also consent to outpatient mental health care, substance use treatment - 18 states allow, but do not require, a physician to inform a young person's parents that he or she is seeking or receiving STI services when the doctor deems it in the patient's best interests - 39 states and DC allow all individuals, regardless of age, to consent to STI and HIV services, while the remaining states allow certain categories of young people or those at a specified age (such as 12 or 14) and older to consent to such care - 2 states and the District of Columbia explicitly allow all individuals to consent to abortion services, regardless of age - Legal background: - In 2019, federal law required health insurance plans to cover full range of female contraceptive methods, incl. counselling/related services, w/o OOP costs, but some youth may not use insurance because they aren't aware of coverage or have confidentiality concerns - The U.S. Supreme Court ruled minors' privacy rights include right to contraceptive services - No state explicitly requires parental consent/notification for minors to obtain contraceptive services, but Texas and Utah require it for contraceptive services paid w/ state funds - 21 States and DC allow Twenty-one states and the District of Columbia (DC) allow minors to independently obtain contraceptive services, another 25 have affirmed that right for certain classes of minors (married, parenting, emancipated etc.), 4 states have no policy - 21 states require that at least one parent provide consent before a patient younger than 18 can obtain an abortion, while 10 states require prior notification of at least one parent. - 6 states require both notification of and consent from a parent before a minor's abortion. - 6 states have parental involvement laws that are temporarily or permanently enjoined. - 5 states have no explicit policy or relevant case law Confidentiality: - In one study, females who report concerns w/ confidentiality were significantly less likely to have received a contraceptive service in the previous year than those w/o concerns - In another study, around 1/4 of women ages15-25 who received contraceptive services received them from publicly-funded clinics, rest from private HCPs - Nearly 1M women under 20 received contraceptive services from publicly-supported family planning centres in 2014, helped postpone/avoid approx. 230K unwanted pregnancies

Mental and physical health considerations for sexually exploited youth

Definitions: - In USA, Trafficking Victims Protection Act (TVPA) of 2000 defined sex trafficking as the "recruitment, harbouring, transportation, provision, or obtaining of a person for the purpose of a commercial sex act," defined severe trafficking as through the use of force, fraud, or coercion, or if the victim is less than 18 years old - "Commercial sexual exploitation of children" is defined by the Office of Juvenile Justice and Delinquency Prevention as "crimes of a sexual nature committed against juvenile victims for financial or other economic reasons." - Includes: prostitution, pornography, sex tourism, mail order bride, adolescent marriage (generally to older men), performance in sexual venues like strip clubs, survival sex, private parties, massage parlours, gang-based prostitution, and Internet-based exploitation - Although not included in legal definition by OJJDP, many experts also incl. youth who engage in sex for desirable items/perceived excitement/social status, those who engage in "survival sex" (eg, engaging in sex acts in exchange for money, food, shelter, or other basic necessities) under the rubric of CSEC - Experts suggest number of SEY may be growing Problems: - Often go unidentified by health providers, but may have frequent contact with health care/juvenile delinquency/foster care systems, interact with HCPs in these settings - Studies show high risk for medical/psychiatric problems, psychosocial histories, incl. having experienced childhood abuse, homelessness, and foster care placement - High rates of childhood maltreatment, exposure to violence, threats of death, coercion, isolation, and poor living situations place CSEY at elevated risk for severe mental health issues (PTSD, depression, substance abuse, anxiety, suicidality) - One study of SEY in care in USA revealed high levels of depression, anxiety, anger/attachment issues, 30%+ engaging in self-harm, seventy percent of trafficked women/youth in care in Europe revealed 77% rate of probable PTSD, cognitive impairment (memory, functioning) also possible (secondary to TBIs/violence, or mental-health related), substance use is also possible (and can exacerbate mental/physical health issues) - Physical health implications: violence-related injuries, reproductive health needs, infectious disease treatment, chronic medical conditions, substance abuse

Parts of the Brain

Frontal lobe, prefrontal cortex, temporal lobe, cerebellum, occipital lobe, parietal lobe

Principle of least restrictive means

If there are many options to accomplish a certain public health goal, "the full force of state authority and power should be reserved for exceptional circumstances and that more coercive methods should be employed only when less coercive methods have failed"

Exceptions to Confidentiality

Justifications: - Potential harm to identifiable third parties is serious, likelihood of harm is high, breaching confidentiality will prevent harm - No less invasive alternative means for warning or protecting those at risk, harm to patient minimized Exceptions to Protect Third Parties: - Reporting to public officials (injuries causes by weapons or crimes, infectious diseases, warning by physicians of persons at risk ie. impaired driver to DMV) Exceptions to Protect Patients: - Child abuse, elder abuse, clinical emergency, involuntary comittment

Willowbrook Justifications/Criticisms

Krugman's Defence: - There was no additional risk for the subjects, under the normal conditions at the institution the subjects would have been exposed to the same strains of hepatitis - Deliberately-infected children had a mild reaction, milder than those who got it naturally - Experimental subjects had a lowered risk of complications since they were housed in a special unit where there was little danger of exposure to other diseases - Experimental subjects had the chance of benefiting from immunization - Experimental subjects were obtained only with informed consent from parents Justifications: - Researchers obtained consent from the parents of each child w/ information provided by Willowbrook orally and in writing, parents whose children participated could later meet research staff, tour facility, discuss program, speak w own private physicians, then researchers would ask consent Criticisms: - Experimentation on children, even with parental informed consent, is illegal unless it is in the interests of the child - Coercion might invalidate informed consent - Patient's right supersedes consideration about what would benefit humanity - The institutionalized or intellectually disabled should not be used for human experimentation - The staff of a substandard institution has a duty first and foremost to improve the institution

Right-to-Try

Legal background - Patient advocacy groups (i.e. Abigail Alliance) attempted to make experimental drugs available terminally ill patients w/o applying for compassionate use or requiring FDA/IRB approval - Abigail Alliance v. von Eschenbach (2007) (advocacy group argued that FDA policies prohibiting access to investigational drugs violated terminally ill patients' right to life, US Court of Appeals for DC held that constitutional right exists (2006), reversed decision in 2007 - 2014, a policy report by the Goldwater Institute advocated that terminally ill patients should be able to try investigational drugs that had completed phase 1 trials Relevant laws: - RTT laws gave terminally ill patients faster access to drugs post-Phase 1, but not FDA approved, protected drug companies/physicians from liability - RTT state laws started in 2014, 5 states, since expanded to 20+ states, state laws existed in tension w/ federal laws until 2018, but federal gov't never challenged them - Trump signed Right to Try Act in 2018: patients became eligible for a "right to try" if they had life-threatening disease, exhausted available treatment options, unable to participate in clinical trial, gave written informed consent Arguments for: - Patients have a right to life, and thus they have a right to try treatments that might prolong their life - Patients should not be rendered unable to try a drug due to eligibility criteria, or other factors preventing them from participating in a clinical trial - The FDA application for expanded access or compassionate use is too burdensome, and terminally ill patients have little time left Arguments against: - Investigational treatments have potentially serious risks - The odds are low that an investigational treatment will actually work - Investigational treatments may actually lead to death, or keep patients from end-of-life care that would improve their remaining quality of life - Patients may be subject to financial risks (i.e. they may have to pay for the drug, or waive the use of their medical insurance for managing side effects/complications from the treatment) - Requiring patients to participate in a clinical trial participation or apply for compassionate use promotes fair allocation of sparse resources - Might delay or interfere with the clinical trial process, slowing the development of treatments that could benefit other members of society

Seigel's Four Features of Adolescent Brain Development

Novelty Seeking Increased Emotional Intensity Creative Exploration Social Engagement - Enhanced dopamine release starting in early adolescence, peaking midway through - Baseline level of dopamine is lower, release in response to experiences is higher - Increased drive for reward, improving salience, impulsivity, increased susceptibility to addiction, hyper-rationality

Privacy vs. Confidentiality

Privacy: - Refers to patients' interests in controlling information about themselves, access to their bodies, and freedom to make decisions about their health care - Patients determine information they disclose to their physician, how information might be used - Related to other interests including liberty and autonomy Confidentiality: - Refers to further disclosure of information that the patient has provided to the physician - Disclosure might be to other health care professionals, insurance company, public health officials Legislation: 1996 HIPAA Privacy Rule, also called the Standards for Privacy of Individually Identifiable Health Information, provided the first federal regulations for the use/disclosure of an individual's health information. HIPAA defines how covered entities use individually-identifiable health information or the PHI (Personal Health Information)

Informed Consent

Roots in ethical theory/law: - Concept of autonomy, non-maleficence, What other ethical principles apply? Roots in case law involving self-determination, battery, medical malpractice Law requires full disclosure to the patient of the facts necessary to form the basis of a reasonable, informed consent Informed consent principles: - Disclosure of information to patients and their surrogates (nature of illness, proposed diagnosis, potential risks/benefits of all possible treatments and alternatives, including no treatment) - Assessment of patient and surrogates understanding of the information and their capacity for medical decision-making - Obtaining informed consent (voluntary agreement) before treatments and interventions

Declaration of Helsinki (1964)

Set of ethical principles regarding human experimentation developed for the medical community by the World Medical Association (WMA) in 1964. Been since revised, but it is widely regarded as the cornerstone document on human research ethics. Basic Principles: 1. Respect for the individual, right to self-determinations, right to informed decisions re: participation in research, initially and during research. 2. Investigator's duty is solely to the patient/volunteer, subject's welfare takes precedence over interests of science/society, ethical considerations take precedence over laws/regulations 3. Vulnerable individuals/groups require special vigilance (physical/mental incompetence, unable to give consent, minors), surrogate consent is allowed based on subject's best interest Operational principles: 1. Research based on thorough knowledge of the scientific background, careful assessment of risks and benefits, reasonable likelihood of benefit to the population studied, conducted by suitably trained investigators using approved protocols, subject to independent ethical review and oversight 2. Studies discontinued if original considerations are no longer satisfied 3. Study info/results/conflicts of interest publicly available 4. Experimental investigations compared against the best methods 5. The interests of the subject after study completion part of ethical assessment, including access to the best proven care, unproven methods tested where there is reasonable belief of benefit

Vaccine-related controversy/'mandatory' vaccines

States can (mostly) overrule parental decisions only when the decisions place the child at significant risk of serious harm However, vaccination is different, because benefits to society are also at stake All 50 states and the District of Columbia require children to be vaccinated in order to attend schools and day cares 1 - Vaccines developed by pharma companies/health agencies 2 - Licensed by FDA 3 - Recommended by CDC, endorsed by medical associations (AMA, AAP, AAFP) 4 - May be mandated by state legislatures, health officials (also req by certain employers, such as hospitals requiring flu vaccines for all nurses/medical staff) Exemptions: Medical (qualifying conditions, all states allow, difference b/w permanent and temporary, these people rely on herd immunity), religious (nearly all states), personal belief (about half of states) - Clusters of exemptions can lead certain communities to outbreaks - In general, states in which it is easier to obtain personal belief/philosophical exemptions have seen exemptions increase over time i.e. California, previously notorious for laxity around personal belief exemptions, had seen increasing exemptions leading up to the measles outbreak in 2014 - On the other hand, states that have imposed more stringent requirements have seen exemptions decrease i.e. after Oregon required parents to complete an educational module, exemptions decreased 17%