Ethical and Legal Considerations in Caring

for Teens

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

University of Washington School of MedicineDirector of Education, Treuman Katz Center for Pediatric Bioethics

Children’s Hospital and Regional Medical Center

Where is this going?

Parental Limits and Decision-making

Our current approach to adolescent decision-making (autonomy based)

The Adolescent Brain

A more nuanced understanding of adolescent decision-making

Confidentiality

Daniel Hauser

13 year old

Sleepy Eye, Minnesota

Hodgkin’s Lymphoma (90% chance of cure)

Had one round of chemo

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

Daniel Hauser

Claims treatment would violate his religious beliefs

Chemotherapy is self-destructive and poisonous

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

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

Daniel Hauser: District Court

Daniel does not believe he is currently ill

Rudimentary understanding of risks and benefits of chemotherapy: Not a mature minor

Ordered to report for a CXR and select on oncologist

Must agree to treatment, if indicated

If refuses, will be placed in temporary custody

Mother and child disappear

Parental Authority

Moral, social, and legal grounding

Parental Permission

Parental authority is not unrestricted

State may intervene when child endangered

Limits of Parental Authority

Best Interests of the Child Significant risk of serious harm Not always separable from family interests

Parental Incompetence

Neglect or Abuse

Conditions that justify state interference

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

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

No less intrusive alternatives

Test of Generalizability

Test of Publicity (other would agree it is reasonable)

Does the Adolescent have any decision-making

authority?

“Neither Youth nor Childhood is Folly or Incapacity. Some Children

are Fools and So are some Old Men.”

--William Blake

Capacity and AgeCapacity and Age

Issues

Legal Status

Ethical Approach

Adolescents and Consent

Conditional consent-emergencies

Emancipated minors

Condition-specific exceptions Psych, STD, Pregnancy, Drug/Alcohol

Mature minor Generally above 15 Understanding of nature, purpose, and consequences of proposed

treatment

Typical Approach

Is the adolescent emancipated?

Is the adolescent a mature minor?

What is parent’s decision? Does this cause significant risk of serious harm to the adolescent?

Focus on establishing capacity through assessment of rational faculties

Traditional Approach: Rule of Sevens

Under 7 yo: No Capacity

7-14 yo: Rebuttal presumption of incapacity

14-21 yo: Rebuttal presumption of capacity

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

Adolescent Decision-making: The Problem

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

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

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.

The Adolescent Brain

“Two” Brain Systems

Balance between the two systems: “Rational”: PFC “Emotional”: Limbic Structures, Ventral

Striatum

Both have value; Either can mislead

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

Epstein. Stanford Social Innovation Review. Spring 2006.

“Emotional” Brain

Picks up patterns before consciously aware of them

Motivates behavior change through feelings, autonomic responses

First Impressions Often based on a “thin-slice” slice of

available information

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

What does the PFC Do?

High level reasoning

Decision-making

Impulse control

Assessment of consequences

Planning, strategizing, organizing

Inhibit inappropriate behavior

Adjust behavior when situation changes

Setting priorities

Estimating and understanding probabilities

Adolescent Brain Development

Not fully matured till mid 20s Maturation occurs “back to front” Pre-frontal cortex is last to mature Imbalance: Less active pre-frontal,

more active reward response system (ventral striatum) and limbic system

Males vs. Females

PFC vs. Limbic System

PFC: Situation assess plan (STOP) of survival

Limbic System: Situation emotion/feeling

react

The adolescent brain “has a well-developed accelerator but only a partly developed brake.”

--Laurence Steinberg, Psychologist

Implications: PFCDD?

Impulsive, Inflexible Aggressive, Reckless Emotionally volatile Risk-taking: Less sensitive to risks and

more sensitive to possible rewards Reactive to stress Vulnerable to peer pressure Respond to short term-rewards,

excitement, and arousal Underestimate long term consequences Overlook alternatives

The Adolescent Brain:Summary

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

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

Thrill seeking and risk taking, Impulsive Brain is very good at decision-making tasks Brain is not very good at making decisions in

emotionally charged situations Decisions may weigh current rewards and

feelings at expense of future implications

Implications

Adolescents are capable of making rational decisions

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

More likely to act impulsively without full consideration of consequences

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

Emotional or “Gut Response” vs Reason

External Influences

On Computerized Risk-taking tests done while alone and while watched by friends: Adults: presence of friends has no effect Adolescents: presence of friends doubles the number of

risks taken

Brain scans at same time suggest presence of friends activates a different part of the brain

Limit setting and less permissive parenting can be helpful

Laurence Steinberg

Implications: Four Teens on Sauk

Mountain

Implications for Injury Prevention

Teen Risk assessment is different

Teen Driving Graduated driver’s licenses Restriction of Driving with peers

Activities and Peers

Alcohol

Access to firearms (Dakotah Eliason)

Implications for Adolescent Decision-making

Respecting the Adolescent

Involvement in Discussions and Decisions Recognize developing capacity Recognize that even at 17, their decision-

making may differ from “mature” decision-making

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

May need limits and direction

The Use Of

Force

Confidentiality

and

Adolescents

Privacy Rights 2002Wall 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

15 yo female accompanied by mother

CC: Vomiting

Mom willingly leaves

Adolescent concerned about pregnancy

Wants pregnancy test but does not want mother to know it is being done

Why Respect a Rule ofConfidentiality?

Avoid causing harm to others

Respect for autonomy

Maintenance of Trust

Implicit Promise in certain interactions

Effectiveness of Medicine

Rated first or second in importance by teens seeking health care

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

Mandatory Notification of Contraceptive Prescription

59% of Adolescent Girls would stop using some sexual health care services

47% would discontinue use of all sexual health care services (including contraception and STD treatment

99% would remain sexually active

Reddy et al. JAMA 2002; 288: 710Reddy et al. JAMA 2002; 288: 710

Ethics and Creativity

Do you honor request?

Will you tell mother you are doing the test?

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

Will you lie to the mother?

Case Questions

What if father is 21 year old boyfriend

What if she is 16?

What if she is 17?

Case # 2

15 year old alone

Diagnosis: Pregnancy

Father: Her step-father

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

Justifying Disclosure ofConfidential Information

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

Disclosure is necessary to prevent the harm

Disclosure probably would prevent the harm

No less intrusive alternative

Harms avoided must justify harm of breach

Violations of Confidentiality

Last Resort

Patient notified of intended breach

ONLY those with a need to know

ONLY the minimum information necessary

Duty to minimize harm

Practical Suggestions

Do NOT promise something you can’t guarantee

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

Breaches in Confidentiality’s Wall

FAX Machines

Cellular Phones

Cordless Phones

Answering Machines

Billing Statements

Computerized Records