S

Ethical and Legal

Considerations in Caring

for Teens

Douglas S. Diekema, M.D., M.P.H. Professor of Pediatrics

University of Washington School of Medicine

Director of Education, Treuman Katz Center for Pediatric Bioethics

Children’s Hospital and Regional Medical Center

Where is this going?

S Parental Limits and Decision-making

S Our current approach to adolescent decision-making (autonomy

based)

S The Adolescent Brain

S A more nuanced understanding of adolescent decision-making

S Confidentiality

Daniel Hauser

S 13 year old

S Sleepy Eye, Minnesota

S Hodgkin’s Lymphoma (90% chance of cure)

S Had one round of chemo

S Medicine Man and church Elder in Nemenhah, an American Indian religious organization

Daniel Hauser

S Claims treatment would violate his religious beliefs

S Chemotherapy is self-destructive and poisonous

S Wants to pursue an alternative regime of complementary medicine including dietary changes and “ionized” water.

S “I’d fight them if I had to take it again. I’d punch them and I’d kick them.”

Daniel Hauser: District Court

S Daniel does not believe he is currently ill

S Rudimentary understanding of risks and benefits of

chemotherapy: Not a mature minor

S Ordered to report for a CXR and select on oncologist

S Must agree to treatment, if indicated

S If refuses, will be placed in temporary custody

S Mother and child disappear

Parental Authority

S Moral, social, and legal grounding

S Parental Permission

S Parental authority is not unrestricted

S State may intervene when child endangered

Limits of Parental Authority

S Best Interests of the Child S Significant risk of serious harm

S Not always separable from family interests

S Parental Incompetence

S Neglect or Abuse

Conditions that justify state

interference

S Parents action places the child at significant risk of harm that is serious and imminent

S Interference is necessary to prevent harm, likely to prevent harm (proven efficacy), and is not associated with similar risk of similarly serious harms (Proportionality)

S No less intrusive alternatives

S Test of Generalizability

S Test of Publicity (other would agree it is reasonable)

Issues

S Legal Status

S Ethical Approach

Adolescents and Consent

S Conditional consent-emergencies

S Emancipated minors

S Condition-specific exceptions

S Psych, STD, Pregnancy, Drug/Alcohol

S Mature minor

S Generally above 15

S Understanding of nature, purpose, and consequences of proposed

treatment

Typical Approach

S Is the adolescent emancipated?

S Is the adolescent a mature minor?

S What is parent’s decision? Does this cause significant risk of

serious harm to the adolescent?

S Focus on establishing capacity through assessment of rational

faculties

Traditional Approach:

Rule of Sevens

S Under 7 yo: No Capacity

S 7-14 yo: Rebuttal presumption of incapacity

S 14-21 yo: Rebuttal presumption of capacity

Cardwell v. Bechtol 724 SW 2d 739 (Tenn 1987)

Adolescent Decision-making:

The Problem

S Adolescents often do not perform at a level commensurate with their cognitive abilities

S Middle adolescents are more likely than younger adolescents to rely on analytic processing, but this is not their primary means of decision-making

S Middle and Older adolescents have the ability to make adult-level decisions (i.e. possess competence), but frequently do not use that ability (i.e. maximize use of those abilities)

Kluczynski. Child Development 2001; 72:844.

“Two” Brain Systems

S Balance between the two systems:

S “Rational”: PFC

S “Emotional”: Limbic Structures, Ventral Striatum

S Both have value; Either can mislead

S “Emotional” system most adaptive for humans living in small communities (responds to individuals, crisis, reward--less utilitarian)

Epstein. Stanford Social Innovation Review. Spring 2006.

Scarecrow and Tin Man

S Scarecrow: Caring, but “brainless”

S Tin Man: Cerebral, but “needs a heart”

Loewenstein & Small. Rev Gen Psych 2007; 11:112-126

“Emotional” Brain

S Picks up patterns before consciously aware of them

S Motivates behavior change through feelings, autonomic responses

S First Impressions

S Often based on a “thin-slice” slice of available information

Gladwell. Blink. NY: Little, Brown, & Co, 2005.

What does the PFC Do?

S High level reasoning

S Decision-making

S Impulse control

S Assessment of consequences

S Planning, strategizing, organizing

S Inhibit inappropriate behavior

S Adjust behavior when situation changes

S Setting priorities

S Estimating and understanding probabilities

Adolescent Brain Development

S Extensive Remodeling and Pruning

S Increased Linkages

S Corpus Collosum thickens

S Stronger links between Hippocampus (memory) and

Frontal areas (goals and agendas)

S Increased Myelinization

Impact of Changes

S Improved balancing of impulses, desires, goals, self-interest,

rules, ethics, etc.

S Integration of memory and experience into decision-making

S Improved planning

S Improved balance in considering immediate rewards and

future consequences

Adolescent Brain Development

S Not fully matured till mid 20s

S Maturation occurs “back to front”

S Pre-frontal cortex is last to mature

S Imbalance: Less active pre-frontal, more active reward response system (ventral striatum) and limbic system

S Males vs. Females

PFC vs. Limbic System

S PFC:

S Situation assess plan

S (STOP) of survival

S Limbic System:

S Situation emotion/feeling react

The adolescent brain “has

a well-developed

accelerator but only a

partly developed brake.”

--Laurence Steinberg, Psychologist

Why?

S Once myelinization is complete and connections are

established, learning slows and brain becomes less nimble

and adaptable

S If the brain completed development earlier, the period of

learning would be lost

S “If we smartened up sooner, we’d end up dumber” (David

Dobbs in National Geographic, October 2011)

Why?

S Evolutionary Perspective

S Adolescence: Movement from safety of home to complex

outside world

S Requires adaptability, willingness to take risk

S Sensation seeking: enhances learning, social connections

S Risk-taking: The young warrier

Implications: PFCDD?

S Impulsive, Inflexible

S Aggressive, Reckless

S Emotionally volatile

S Risk-taking: Less sensitive to risks and more sensitive to possible rewards

S Reactive to stress

S Vulnerable to peer pressure

S Respond to short term-rewards, excitement, and arousal

S Underestimate long term consequences

S Overlook alternatives

The Adolescent Brain:

Summary

S Imbalance between development of the pre-frontal (later) and sub-cortical areas (early)

S Very sensitive to environmental cues, affective elements, rewards and punishments

S Thrill seeking and risk taking, Impulsive

S Brain is very good at decision-making tasks

S Brain is not very good at making decisions in emotionally charged situations

S Decisions may weigh current rewards and feelings at expense of future implications

Implications

S Adolescents are capable of making rational decisions

S Less likely to be able to do so under conditions of high emotion or intense pressure (including peer pressure)

S More likely to act impulsively without full consideration of consequences

S Psychosocial and emotional contributors interact with cognitive aspects of decision-making

S Emotional or “Gut Response” vs Reason

External Influences

S On Computerized Risk-taking tests done while alone and

while watched by friends:

S Adults: presence of friends has no effect

S Adolescents: presence of friends doubles the number of risks

taken

S Brain scans at same time suggest presence of friends

activates a different part of the brain

S Limit setting and less permissive parenting can be helpful

Laurence Steinberg

Implications for Injury

Prevention

S Teen Risk assessment is different

S Teen Driving

S Graduated driver’s licenses

S Restriction of Driving with peers

S Activities and Peers

S Alcohol

S Access to firearms (Dakotah Eliason)

Respecting the Adolescent

S Involvement in Discussions and Decisions

S Recognize developing capacity

S Recognize that even at 17, their decision-making may differ from “mature” decision-making

S Recognize the kinds of situations in which decision-making may be flawed

S May need limits and direction

The Use

Of

Force

Confidentiality

and

Adolescents

Privacy Rights 2002 Wall Street Journal

“In one of last week’s odder news items, the Smithsonian’s National Zoo refused a request to

release the medical records of Ryma, a giraffe that recently died. What made this refusal so bizarre was

one of the justifications: the zoo director said releasing the records would violate the giraffe’s right to privacy and intrude into the zookeeper-

patient relationship.”

Case

S 15 yo female accompanied by mother

S CC: Vomiting

S Mom willingly leaves

S Adolescent concerned about pregnancy

Why Respect a Rule of

Confidentiality?

S Avoid causing harm to others

S Respect for autonomy

S Maintenance of Trust

S Implicit Promise in certain interactions

S Effectiveness of Medicine

Rated first or second in importance by

teens seeking health care

McPherson A. et al. Br J Gen Pract. 46: 627

Mandatory Notification of

Contraceptive Prescription

S 59% of Adolescent Girls would stop using some

sexual health care services

S 47% would discontinue use of all sexual health

care services (including contraception and STD

treatment

S 99% would remain sexually active

Reddy et al. JAMA 2002; 288: 710

Ethics and Creativity

S Do you honor request?

S Will you tell mother you are doing the test?

S What if test is positive? How will you convey results?

S Will you lie to the mother?

Case Questions

S What if father is 21 year old boyfriend

S What if she is 16?

S What if she is 17?

Case # 2

S 15 year old alone

S Diagnosis: Pregnancy

S Father: Her step-father

S Insists relationship is consensual, voluntary, initiated by her, enjoyable. Wants no intervention.

Justifying Disclosure of

Confidential Information

S Adolescent or another person is placed at significant risk of serious harm

S Disclosure is necessary to prevent the harm

S Disclosure probably would prevent the harm

S No less intrusive alternative

Violations of Confidentiality

S Last Resort

S Patient notified of intended breach

S ONLY those with a need to know

S ONLY the minimum information necessary

S Duty to minimize harm

Practical Suggestions

S Do NOT promise something you can’t guarantee

S Pre-emptively warn adolescents when you will need to break

confidence

Breaches in

Confidentiality’s Wall

S FAX Machines

S Cellular Phones

S Cordless Phones

S Answering Machines

S Billing Statements

S Computerized Records