1. ETHICS IN PEDIATRICS Ricardo L. García, MD, FAAP Pediatric Intensivist University Pediatric Hospital

2. Key Points Can the patient choose their treatment? The capacity to know what is BEST relies in who? Can we have empathy but remain objective? Can we let them go?

3. How many study medicine to save lives? How many study medicine for the money? How many think those are over rated questions?

4. ETHICS IN PEDS What are the issues? What is the deal? Why talk about end of life? Aren’t we physicians?, should we allow our patients to die?

5. Clinical Scenario A Erskin 14 year old male with metastatic neuroblastoma which has failed BMT, is admitted to PICU due to respiratory distress. He has metastasis to both lungs. Parents want “everything” done! Oncologist say do everything you can! And patient says: “I do not want the breathing machine”. What should we do now?

6. Willowbrook State School was a state- supported institution for children with mental retardation located in central Staten Island in New York City. Hepatitis studies on children WITHOUT consent 1963-1966.

7. OBJECTIVES Definition Classifications or types Case scenario discussion Our role as caregivers

8. DEFINITION The term ‘ethic’ comes from the Greek word: ethikos which means ‘moral, character’ Ethics is the study of the rational process for determining the best course of action in the face of conflicting choices. Ethical principles are general statements about what types of actions are right or wrong. Including the principles of autonomy, beneficence, non-maleficience and justice. Reference: Dietrich, A., & Omdahl, D. (1995). The ethics handbook for home health agencies. Mequon, WI: Beacon Health Corporation.

9. DEFINITION Medical ethics are concerned with moral questions raised by the practice of medicine and, more generally, by health care.

10. ETHICS … Ethics are involved and/or influence by: laws religion scientific studies philosophy moral

11. Understanding the basis for Clinical Ethics Ethical philosophies Deontology (Kant) Consequentialism (mill) Virtue (Aristotle) Hedonism Formalist

12. Clinical Ethics: Past and Present Before 1960 - based on traditional professional ethics of medicine Physician was major decision-maker Physician considered a person of highest character who adhered to prominent virtues Paternalistic

13. Clinical Ethics: Past and Present … After 1960 - Based on patient “rights” WHY THE CHANGE? Ethical lapses in human research noted in 60s and 70s Rapid increase in medical technology Quinlan Case - First important “right to die” case President’s Commission for the Study of Ethical Problems in Medicine State laws defining the parameters for decision-making at the end of life

14. Clinical Ethics Medical ethics is primarily a field of applied ethics Values in medical ethics Informed consent Confidentiality Beneficence Autonomy Non-Maleficence Importance of communication Ethics committees Cultural concerns Conflicts of interest: Futility

15. Medical ethics Six of the values that commonly apply to medical ethics discussions are: Beneficence - a practitioner should act in the best interest of the patient. Non-maleficence - "first, do no harm“ Autonomy - the patient has the right to refuse or choose their treatment. Justice - concerns the distribution of scarce health resources, and the decision of who gets what treatment (fairness and equality). Dignity - the patient (and the person treating the patient) have the right to dignity. Truthfulness and honesty - the concept of informed consent.

16. Principles of Medical Ethics Physician shall be dedicated to providing competent medical care, with compassion and respect for human dignity and rights. Shall uphold the standards of professionalism, be honest, and strive to report physicians deficient in character or competence, or engaging in fraud or deception, to appropriate entities. Shall respect the law and also recognize a responsibility to seek changes in those requirements which are contrary to the best interests of the patient. Shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences and privacy. Shall continue to study, apply, and advance scientific knowledge, maintain a commitment to medical education.

17. Principles of Medical Ethics A physician shall, in the provision of appropriate patient care, except in emergencies, be free to choose whom to serve, with whom to associate, and the environment in which to provide medical care. A physician shall recognize a responsibility to participate in activities contributing to the improvement of the community and the betterment of public health. A physician shall, while caring for a patient, regard responsibility to the patient as paramount. A physician shall support access to medical care for all people. Adopted by the AMA's House of Delegates June 17, 2001

18. Ethical decision making in healthcare today Medical care defined by Courts, Legislatures, Commissions, Media, Ethics Committees, and others Ethical decision-making may be very complex No longer does the doctor make decisions alone nor does the autonomous patient exercise his/her rights without interference. Clinical ethics: decisions are more process oriented than outcome oriented, requiring a process of consensus building, no matter the outcome.

19. 21 year old Baby Doe Rule Federal regulation of how to treat extremely ill, premature or terminally ill infants less than 1 y/o Amendments of the Child Abuse and Protection and Treatment Act Kopelman et al. Pediatrics 115(3)797 2005

20. 21 year old Baby Doe Rule The 1996 AAP Committee on Bioethics, in "Ethics and the Care of Critically Ill Infants and Children," also agrees that decision- making for all children regardless of age should be individualized and made by the guardians and physicians based on what is best for the infants.

21. Decision Making Based on patient right to auto-determine. In pediatrics is based on the FAMILY to determine in the ‘BEST interest’ of the Child as an individual.

22. Ethical Issues in Healthcare Informed consent Informed consent Confidentiality / privacy Confidentiality / privacy Maintenance of healthcare provider competence Maintenance of healthcare provider competence Quality of Life Quality of Life Right to Live or Die Right to Live or Die Participation in the decision making process Participation in the decision making process Abortion Abortion Eutanasia Eutanasia

23. Ethical Issues in Pediatrics ■ Refuse immunizations ■ Refuse seek care ■ Genetic therapy ■ Congenital anomalies ■ Withhold therapy vs. Withdrawal of treatment ■ End of life decisions ■ Informed consent ?

24. Ped Issues Informed consent: Parents or legal guardians are responsible Based on the “best interest of the child” Pediatric patient should participate in the process ‘A child to ultimately become self governing, they must relentlessly practice decision making’.

25. Ped Issues… AAP: Informed consent has only limited direct application in pediatrics, it should be replaced by concept of parental permission / child assent. GOAL: Collaborative decision making among patient, family and physician integrating child interests with family values and beliefs.

26. Ethics Ethical theories does not give a concrete answer but serves as guide. Doctrine of “DOUBLE EFFECT” Ordinary versus Extraordinary

27. Ethics In example: Should we alleviate the pain of a dying patient? Should we stop a treatment that keeps our patient alive, but still will not save him?

28. CASE SCENARIO

29. Case Scenarios CASE 1: 1 y/o child in routine pediatric office visit with no immunizations due to parents concern about learning disorders, side effects and risks of autism. What should we do? Dialogue with parents. Continue to Care for Child. Refer to social services / court.

30. Case Scenario CASE 2: 7 y/o male that has been sick at his home, parents refuse to take him to the doctor, but the neighbor knows that you are a physician and tell you of the situation. Parents are from Christian Scientist Religion What should we do? Dialogue with parents and check the child Do nothing, is not your business Refer to social services with or without your involvement

31. IMPORTANT Children are not the ‘martyr’ of the parents religious beliefs If there is risk of immediate harm or the absence of action may cause definitive harm we must act in the BEST INTEREST of the CHILD.

32. END OF LIFE… How we define it? Our own thoughts and feelings will influence our approach to patient care. “We are terminal as soon as we are born”

33. END OF LIFE Understand your environment Sometimes the issue can be as an elephant inside the room… We become anxious to talk about palliative instead of ‘curative’ care

34. END OF LIFE Requires: Becoming comfortable with end of life issues Understanding the scope of experience from patient’s family perspective Understand the full range of options Developing a “can do” approach Learning to share and receive information in a compassionate manner

35. Alternative views of death ■ “Higher brain” or partial brain concepts of death focus on: ■ loss of cognitive functions ■ loss of capacity for memory, reasoning, and other higher brain functions ■ loss of personal identity ■ While many individuals feel that loss of the above capacities make a person “as good as dead,” These views are not universally held. ■ At present we are left with defining death in the ICU by measurable parameters.

36. FACTS Withdrawal of Life support is a clinical procedure that requires good medical skills, cultural sensitivity, attention to ethical principles, and close collaboration with patient’s families. Basic Terminology Futility Palliative Life Sustaining Treatment

37. FUTILITY American Thoracic Society (ATS) 1991 “If reasoning and experience indicate that the intervention would be highly unlikely to result in a meaningful survival for that patient”. Most of the literature on medical futility examines the ethical and legal aspects rather than its use in clinical practice.

38. Principles for Palliative Care The AAP calls for a common objective: “The goal is to add life to the child’s years, not simply years to the child’s life” Palliative care enhances the child’s quality of life by symptoms-relief and by dealing with circumstances/conditions that prevents the child to enjoy life

39. Right to Die Karen Ann Quinlan (March 29, 1954 – June 11, 1985). An important figure in the history of the right to die debate in USA. Because she and her family were Catholics, several principles of Catholic moral theology were critical in deciding the case and thus influencing a development in American law, an influence replicated around the world. The case is credited also with the development of the modern field of bioethics. Although Quinlan was removed from active life support in 1976, she lived on in a coma for almost a decade until her death from pneumonia in 1985.

40. Life-Sustaining Treatment (LST) Does not necessarily imply an intent or choice to hasten the death of a child Duty of care is not an absolute obligation to preserve life by all means Forgoing life-sustaining treatment does not imply that a child will receive no care; The “focus” of treatment changes from life sustaining to palliative

41. Life-Sustaining Treatment (LST) The background to all treatment is “in the child’s best interests” Withholding and the withdrawal of live saving treatment are ethically equivalent but emotionally they can be poles apart Decisions should be frequently reviewed, and can change with changing circumstances Treatment of the dying patient is not euthanasia

42. Situations where LST might be considered The “No Chance Situation” The “No Purpose Situation” The “Unbearable Situation” Any combination of the above i.e. the Permanent Vegetative Status

43. Who has the Authority to make Health Care Decisions Parents’ moral responsibility for their child’s care Their responsibility can over-ride a child’s refusal Legal Guardian: Responsibility acquired by people who are not the child’s natural parents Parent’s/legal guardian’s role is not unlimited

44. Capacity and Competence Emancipated Minor Status: can legally refuse treatment Mature Minor: has intellectual/emotional development to understand the nature of the medical decision and its consequences. They can give valid consent. Refusing treatment is increasingly becoming an ethical issue instead of a legal one.

45. Special Circumstances Child Abuse Congenital Malformations Advance Directives: Living Wills or Donor Cards Parents usually unable/unwilling to “let it go” Parental guilt might interfere with the decision process The feeling that the child has already been through enough Neonates and premature babies

46. Conflict Resolution  Understand Parameters within which decision must be made  State and Federal Law  Guidelines from commissions, professionals groups, networks, etc  Community and Institutional Values  Professional Codes  Personalities and beliefs of persons involved  Internal and external power issues  Understand what help is available  Ethics committee  Professional organizations  Attorney  State legislative committees  Religious organizations  Courts (as a last resort)

47. Conflict Resolution … Establish rapport with the parents and the patient as soon as possible Design an “overall”, “prospective” plan of care Communicate face-to-face with the parents/caretakers Above all, respect the family’s wishes at all times Discussion, Consultation and Consensus

48. Practical aspects of Palliative care: Can be provided regardless of the location: the patient’s home, or in hospitals, hospices, etc. Sedation/Analgesia Treatment of dyspnea Treatment of nausea and vomiting Limitation of fluids/feeds Treatment of seizures Treatment of depression/anxiety Education

49. Case Scenario II Terri…………. Inmaculada Echevarría: "No es justo vivir así" 20MINUTOS.ES. 18.10.2006 Head Trauma……….Brain death

50. EUTHANASIA Life sustaining treatment can be withdraw if there is futility? Is this withdrawal equivalent to euthanasia?

51. Withdraw of LST You should not withhold treatments that alleviates pain or make the patient comfortable. ‘You should provide if possible food and water’ Terri’s case? Law in PR

52. v DERECHOS DEL PACIENTE/FAMILIA Los pacientes, muchos de estos garantizados por ley: 1. Todos los niños y sus familias deben tener el derecho al acceso al tratamiento medico. 2. Todos los niños y sus familiares tienen el derecho a la privacidad, confidencialidad de la información y cuidado respetuosamente. 3. Todos los niños y sus familiares tienen el derecho a tener cuidado agradable y deseable que sostenga la relación niño-familia. 4. Todos los niños y su familia tiene el derecho a recibir comunicación que es apropiada y completa para el conocimiento del niño y también completa y comprensible para la familia.

53. v Cont…. 5. Todos los niños y sus familiares tienen el derecho a recibir el cuidado de salud que esta enfocado a pediatría. 6. Todos los niños y sus familiares tienen el derecho al cuidado de el niño que promueva el crecimiento físico y de desarrollo. 7. Todos los niños y sus familiares tienen el derecho a ser parte del cuidado y proveerle con alternativas cuando esto sea posible. 8. Todos los niños y sus familiares tienen el derecho a expresarse y a proveerle con soporte. 9. Todos los niños y sus familiares tienen el derecho a recibir información completa de tal forma que se tomen las decisiones de forma legal relacionado al cuidado del paciente.

54. SUMMARY Never rush decisions Avoid rigid rules The decision to forgo curative therapy must be followed by consideration of the child’s palliative or terminal care needs If in doubt what to do: err on the side of sustaining life

55. SUMMARY Do not expect complete consensus Do not withdraw palliative or terminal care designed to make the patient comfortable Palliative treatments that may incidentally hasten death may be justified if their primary aim is to relieve suffering The USA law does not support the concept of active euthanasia

56. SUMMARY Be compassionate Be understanding to the different family situations Our job is not to resolve all the “family issues” Provide quality time for the family to interact with the child

57. REMEMBER THERE IS NO RIGHT ANSWER