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ETHICS IN PEDIATRICS

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ETHICS IN PEDIATRICS Ricardo L. Garc a, MD, FAAP Pediatric Intensivist University Pediatric Hospital END OF LIFE Requires: Becoming comfortable with end of life ... – PowerPoint PPT presentation

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Title: ETHICS IN PEDIATRICS


1
ETHICS INPEDIATRICS
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?
  • Arent 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
  • Presidents 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
  • Confidentiality / privacy
  • Maintenance of healthcare provider competence
  • Quality of Life
  • Right to Live or Die
  • Participation in the decision making process
  • Abortion
  • 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
    patients 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
    patients 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 childs years,
    not simply years to the childs life
  • Palliative care enhances the childs 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
    childs 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 Authorityto make Health Care
Decisions
  • Parents moral responsibility for their childs
    care
  • Their responsibility can over-ride a childs
    refusal
  • Legal Guardian Responsibility acquired by people
    who are not the childs natural parents
  • Parents/legal guardians 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 familys wishes at all
    times
  • Discussion, Consultation and Consensus

48
Practical aspects of Palliative care
  • Can be provided regardless of the location the
    patients 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
  • Terris case?
  • Law in PR

52
DERECHOS DEL PACIENTE/FAMILIA
v
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
Cont.
v
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 childs
    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

58
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