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The Language of Bioethics (Glossary)

Objectives

Goals

Required Reading

Suggested Reading

Unique Aspect for Ethics in Pediatrics

Responsibility of the Physician in Pediatric Care

Goals of Medicine in Pediatrics

Clinical Vignette

Discussion Questions

References & Resources

The Pediatric Patient
Personhood, Parents, and Principles

Objectives

To explore the physician's responsibility to the child as patient, the role and rights of parents, and ethical and legal principles which guide decisions when they are in conflict.

Goals

1. Describe what makes caring for pediatric patients unique, or different from caring for adults.
2. What is the "best interests" standard? Who determines the child's best interests? Are there problems with this standard of decision making?
3. What role(s) does (do) the physician caring for children fulfill?

Required Reading

1. Introduction to Clinical Ethics by Fletcher, Miller, Lombardo and Marshall. Second Edition.
   "Decisions about Treatment in Newborns, Infants and children,"
   p 181-204

Unique Aspects for Ethics in Pediatrics

1. Children, infants and fetuses are recipients of care and cannot express their preferences in management

A. Inability to participate in decision-making

1. Immaturity

a.Generally presumed

b.Exception may be made in the case of the developmentally maturing and cognitively more capable pre-adolescent and adolescent who can be included in the decisional process...pediatric "assent," permission, versus "consent"

c. Legal concept of the "mature minor"

2. Uncertainty as to future individual values, preferences, qualities and capabilities

B. Dependence upon others

1. Parent/guardian with extensive [though not absolute] legal and moral responsibility

2. Welfare of the patient influenced by the family situation and concurrent multiple obligations

3. In regard to fetus, it may be difficult to determine who the primary patient is (mother/fetus), the moral and legal status of the fetus, and how these are balanced

C. Children are the population of the future; policies and decisions about their care impact beyond the present

Responsibility of the Physician in Pediatric Care

1. Benefit the patient

A. Standard of the patient's best interests

1. Occasionally difficult to ascertain

2. May prove difficult to apply

2. Refrain from harm

Goals of Medicine in Pediatrics

1. Maintenance and restoration of health
2. Relief of symptoms
3. Restoration of impaired function
4. Saving and prolonging endangered life

Clinical Vignette

Taken from "Active Euthanasia with Parental Consent" by Leake, III, HC. The Hastings Center Report 1979(October):19-21.

Andrea was a 9 year-old girl who had been diagnosed as having cystic fibrosis at the age of 13 months. Since then she had been hospitalized twelve times, eight times during the last year.

When admitted for the last time she was already receiving an experimental antibiotic, which was being administered in an attempt to control a resistant pneumonia superimposed on severely damaged lungs, a result of her underlying disease. She was at the time a severely ill, emaciated child with moderately labored breathing. She seemed to have no interest in her environment and refused to communicate with anyone but her mother.

Because of the severity of the child's illness and because the parents had accurately perceived that the experimental antibiotic was a "last ditch" attempt to control her pulmonary infection, the physicians discussed with the parents their perception of "extreme medical measure" and the significance of a "no code" order. The parents indicated that in the event of a cardiac or respiratory arrest, they did not want their child to be resuscitated and the appropriate "no code" order was written. The child was not involved in these conversations or subsequent decision making, nor had the mother previously been able to answer her daughter's questions about death and dying.

As the child's condition continued to decline, the parents asked how much longer she would live and how she would die. At one point the father said: "watching your own child die is worse than dying yourself." This comment led to a discussion of active euthanasia utilizing intravenous potassium chloride or a similar drug. The physicians pointed out that no matter how hopeless a situation that the patient and family were enduring, the law prohibits the active taking of a patient's life. They refused to consider this option.

The following day Andrea's heart began to fail. Her condition became progressively worse, and she died approximately 48 hours later. During these last two days her parents were appalled by her grotesque appearance, with "eyes bulged out like a frog," and were in great despair because of her steadily deteriorating condition. They felt helpless and impotent to alleviate their daughter's distress. Medical treatment was continued to the end, and no measures were taken to hasten Andrea's death.

Approximately two months after her death, the mother was asked if she would still have given permission for active euthanasia if she had been offered that option. She replied, "Yes."

• Should active euthanasia be permitted to spare the patient
  and family from suffering when death is inevitable?

• Is palliative care necessary for comfort and pain control
  of the dying patient acceptable even if it results
  in an earlier death?

Discussion Questions

1. Describe the Best Interests standard. Can you think of problems in its application?
2. Describe the concept of pediatric assent to medical care.
3. Consider the role of pediatric health care professionals in being advocates for the child patient.

• What does being an advocate mean to the physician?
• Aren't parents advocates too?
• What effects on being an advocate do the following considerations have:
  a) Disease condition (severity)
  b) Uncertainty in outcome
  c) Terminal illness

Suggested Reading

1. Committee on Bioethics, American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995; 95:314-7.
2. Committee on Bioethics, American Academy of Pediatrics. Ethics and the care of critically ill infants and children. Pediatrics 1996; 98:149-52.
3. Fleischman, AR, et al. Caring for gravely ill children. Pediatrics. 94(4 Pt 1):433-9, 1994 Oct.
4. Committee on Fetus and Newborn, American Academy of Pediatrics and Committee on Obstetric Practice, American College of Obstetricians and Gynecologists. Perinatal care at the threshold of viability. Pediatrics 1995; 95:974-6.
5. Committee on Fetus and Newborn, American Academy of Pediatrics. The initiation or withdrawal of treatment for high-risk newborns. Pediatrics 1995; 96:362-3.
6. Committee on Bioethics, American Academy of Pediatrics. Religious objections to medical care. Pediatrics 1997; 99:279-81.

Medical College of Georgia

Please email comments, suggestions or questions to
Alan Roberts, aroberts@mail.mcg.edu.
August 05, 2002