Bioethics

Question 1

What are the three components of ethics?

Answer 1

• Beneficence
• Nonmaleficence
• Autonomy

Question 2

When should palliative care be introduced into a child’s care?

Answer 2

• When a child is identified with a life-limiting condition
• Early in the clinical course
• Introduced simultaneously with potentially curative treatments

Question 3

List the principles embodied by contemporary palliative medicine

Answer 3

• Relief of suffering

- Focus on quality of living and dying, rather than being limited to end-of-life care

Question 4

Whose responsibility is it to initiate discussions about advance care planning?

Answer 4

• Physicians preferable to waiting for families to initiate

Question 5

List the principles to follow when forgoing medically provided nutrition or hydration.

Answer 5

• Children capable of safely eating and drinking who show signs of wanting to, should not be withdrawn
• Decisions about it should be based on whether intervention provides net benefits to child
• Focus on best interests of child
• May be withdrawn from a child who permanently lacks awareness and ability to interact with environment
• Can be withdrawn from children when such measures only prolong and add morbidity to process of dying
• Get ethics involved if controversial decisions are being considered
• provide palliative care measures (oral swabs for dry mouth, management of symptoms of pain)

Question 6

What is the dead donor rule?

Answer 6

• Requires that potential organ donor be declared brain dead or pronounced somatically dead before organ donation using standard cardiorespiratory criteria

Question 7

Define anencephaly

Answer 7

• CNS abnormality that is characterized by congenital absence of forebrain, skull, scalp
• Most die within days/weeks without life-supporting interventions

Question 8

Discuss the issue of organ donation in ancencephalic patients

Answer 8

• usually don’t satisfy standard brain death criteria because of adequate brainstem function (spontaneous respirations and HR)
• by the time brain death or somatic death has been declared, organs have undergone ischemic damage, making them unsuitable for transplantation
• use of life support does not improve the chance of successful organ donation from anencephalic infants
• can offer parents information on stem cell and tissue donations (can do these in non-braindead patients)

Question 9

When is genetic testing of a child appropriate?

Answer 9

• to confirm a medical diagnosis in a symptomatic infant/child as part of medical care
• medical monitoring, prophylaxis or treatment in a healthy asymptomatic child at risk for a genetic condition

Question 10

List the recommendations regarding genetic testing in a healthy child

Answer 10

• parents should be informed of potential psychological and social risks associated with testing (ie. stigmatization, insurance/third party implications)
• best interests of the child should be primary consideration
• for genetic conditions that won’t present until adulthood, defer testing until child is adult and can consent to getting tested or not
• discourage carrier testing unless child able to participate fully in decision to be tested
• genetic testing by a competent, well-informed teen for purpose of reproductive decision making should be considered
• physician not obligated to carry out testing that is not in best interest of child
• adopted kids should not be subjected to genetic testing where there is no timely medical benefit

Question 11

What are the 3 components to informed consent?

Answer 11

• Disclosure: Appropriate information provided
• Capacity: Decision-making capacity assessed, able to receive, understand and communicate information and appreciate the effects, alternatives and non treatment, not age or disease related
• Voluntariness: no manipulation or coercion

Question 12

List situations where parents might not be appropriate decision makers for a child or teen

Answer 12

• parents lack decision-making capacity
• irresolvable differences between parents regarding the child or teen’s care
• when parents have clearly relinquished responsibility for the child/teen
• when legal guardian has been appointed