Ethical Decision-Making in Pediatrics

1. Ethical Decision-Making in Pediatrics Holly K. Tabor, Ph.D. Assistant Professor Department of Pediatrics University of Washington Treuman Katz Center for Pediatric Bioethics Seattle Children’s Hospital

2. “Every interaction between a doctor and a patient has a moral component.” -Carrese and Sugarman, “The Inescapable Relevance of Bioethics for the Practicing Clinician” (2006)

3. Pediatrics vs. Adult Care:What are the important differences?

4. Decision-Making Authority In Care of Adults: In Care of Children: Presumption of lack of decision making capacity – have to demonstrate developmental ability Parents are presumed to speak for children Parents are expected to use “best interests” • Presumption of decision making ability • Adults can chose who can speak for them (surrogates) • Surrogates are expected to use “substituted judgment”

5. Choosing & Refusing Treatment In Care of Adults: In Care of Children: Parents have less discretion in refusing life saving treatments Threshold for state intervention, based on neglect, is lower • Adults (and surrogates) can accept or reject life saving treatments • Threshold for state mandated intervention is high

6. Medical decision-making for children:Beyond consent • Parental Permission • Better concept than “proxy consent” • Requires more attention to child’s interests • Providers have increased role in decision making • Assent • Developmentally appropriate awareness of condition • Disclosing expectations for tests and treatments • Assessing understanding and voluntariness • Soliciting preference when they will be followed AAP Committee on Bioethics. Pediatrics 1995

7. How ethical tensions arise: • The child patient has a voice that needs to be respected in a developmentally appropriate fashion.   • Parents or legal guardians have decision-making rights, because they are often the best person to judge and protect the interests of a child.   • Children are vulnerable and clinicians have special responsibilities to protect the interests of child patients.

8. The Balancing Act of Pediatric Bioethics Child’s Vulnerability Parental Autonomy Child’s Well-Being and Interests Societal Interests and Responsibilities Child’s Developing Autonomy Importance of the Family for the Child’s Development

9. Case 1: Parental Decision-making You are a primary care physician who is assuming the care of a family. Upon review of the past medical history of the 1 year old daughter, you find that she has no immunizations although she received several well child examinations with their chiropractic caregiver. Her current medications include Chinese herbal supplements and the family follows a vegan diet. You ask the parents why your patient hasn’t received immunizations and they state, “We don’t believe in immunizations.”

10. Ethical Issues in Case 1 Parental autonomy vs. Best Interests Isn’t the dilemma best interests vs. best interests instead of parental autonomy vs. best interests? What does “best interests” really mean? • What a “reasonable person” would choose • Expecting parents to promote the welfare (relief of suffering, preservation or restoration of function, quality of life) of their child • Providers may need to tolerate decisions they disagree with if not harmful to the child Understanding the Parents’ Perspective • What are their fears or concerns? • What are the potential cultural beliefs informing their views?

11. Ethical Issues in Case 1 Parental autonomy vs. public health Three ways unimmunized can cause harm: If become ill, increase risk to other unimmunized kids who rely on herd immunity (children with underlying medical conditions) Also increase risk to immunized kids (small % remain susceptible) Immunized individuals share burden of cost of treating illness in unimmunized kids

12. The Problem of Free-riders Parents take advantage of herd immunity Place family interests above civic responsibility Is this fair?

13. Ethical Issues in Case 1 • Law respects parents’ ability to be best judge of what is in their child’s best-interest. • Except in unique cases (abuse, neglect, religious sacrifices).

14. Limits on Parental Autonomy • Physical Abuse • Neglect • Life-threatening Illness/Emergency ----Bright Line---- ----Grey Zone---- • Impact on development or disability • Restrictive or controversial practices

15. A 14 year-old boy is admitted to the Hematology-Oncology ward with acute lymphoblastic leukemia. He presented to the Emergency Department with pallor and dizziness and was found to have a hematocrit of 14.9%. The oncologist would like to start best available chemotherapy immediately, but the patient and his legal guardians (aunt and uncle) have made it clear both verbally and in writing that, as Jehovah’s Witnesses, they will refuse all blood products. His chemotherapy is myeloablative and will cause a further decline in his hematocrit. There is virtually a 100% chance of death with this leukemia if it is not treated and an approximately 75% chance of survival with best available chemotherapy. Case 2: Adolescent Decision-Making

16. Adolescents often capable of meaningful participation in health-care decisions Shifting from assent + parental permission to consent. Movement in pediatric practice and research in the U.S., UK, and Europe to include older children and adolescents as active participants in medical decision-making (And many states have mature minor clauses) Adolescents and Pediatric Bioethics

17. Summary of Empirical Data on Pediatric Capacity • While minors below ages of 11-13 do not generally possess the cognitive capacities of adults, minors ≥ 15 are not any less competent to consent than most adults. (Grisso, Vierling, 1978; Weithorn, Campell, 1982) • Chronological age does not always track cognitive development, but by age 14 most minors demonstrate capacities required by rational consent. (Leiken, 1983) • Recent studies on affect, assessments of risk, and neuroscience on brain development reveal limitations related to emotion and life experience. (Johnson et al, 2009)

18. Two Useful Distinctions CAPACITY • Full capacity: Consent should be obtained from patient, and refusals binding (legal: ≥18 years old). • Developing capacity: If parents and patient disagree, every attempt should be made to persuade the patient rather than override the patient’s wishes. • Impaired or Undeveloped decision-making capacity: Obtain parental consent and override refusal. ESSENTIAL v. NONESSENTIAL TREATMENT (in minors without full capacity) • Essential treatment: only parental permission/consent required; child’s assent recommended but dissent not binding (mature minor exceptions). • Non-essential treatment: dissent may be ethically binding.

19. Refusals: When should the refusals of minors be binding?

20. Refusals • Full capacity: Consent should be obtained, and refusals binding. • Developing capacity: If the intervention is therapeutic but not life-saving, every attempt should be made to persuade the patient, rather than overriding the patient’s wishes. Refusals may still bind in some cases. • Impaired or Undeveloped decision-making capacity: Obtain parental consent and override refusal.

21. Treuman Katz Center for Pediatric Bioethics http://bioethics.seattlechildrens.org Faculty: Ben Wilfond, MD Doug Diekema, MD, MPH Maureen Kelley, PhD David Woodrum, MD Holly Tabor, PhD Doug Opel, MD Activities: Grand Rounds, Case Conferences, Weekly Bioethics Seminar, Annual Conferences Local Resources for Pediatric Bioethics

22. Thanks!