Medical decision-making in pediatrics

Question 1

List 4 things required for informed consent

Answer 1

1) Has capacity to make a decision
2) Is adequately informed and is given all relevant information required by a reasonable person to make a decision
3) Resultant decision must be free of coercion and voluntary

Question 2

What is the first step in obtaining informed consent?

Answer 2

Determining capacity

“the patient’s ability to understand information relevant to a treatment decision and to appreciate the reasonably foreseeable consequences of a decision or lack of decision”

Question 3

Who are medical decision makers for pediatric patients?

Answer 3

Parents or substitute decision makers

Question 4

What is the age of consent in Canada?

Answer 4

Tricky question
There isn’t one!
No universally accepted, legally defined age of consent in Canada

Question 5

Should children participate in medical decision making?

Answer 5

Yes

“participation of children and adolescents in medical decision-making should always be sought, and their involvement should be proportionate with their capacity and circumstances”

Question 6

Why is assent important?

Answer 6

Assent should be sought and strong indicators of dissent should be given serious consideration. However in school aged children may demonstrate signs of assent or dissent, however may not understand the full repercussions of their choice.

Essential to recognizing and respecting any young patient’s intrinsic value

Question 7

What is the minimum standard of acceptable care?

Answer 7

A treatment course that is beneficial, needed to maintain life or health in a paediatric patient and below which an SDM is not permitted to act

Question 8

What may affect an adolescents ability to make an appropriate decision?

Answer 8

Peer pressure
Impulsivity
Risk-seeking behaviours

Question 9

List three other groups that may not be able to appropriately provide consent (depending on the clinical circumstances)

Answer 9

Patients with:

• Mental health concerns
• Complex or chronic health conditions

Question 10

What is the definition of an emancipated minor?

Answer 10

Emancipated minors are adolescents who live independently from parent(s) or guardian(s), or who are parents themselves.

Question 11

What is the definition of a mature minor?

Answer 11

‘“Adolescents who have demonstrated decision-making abilities in other areas of life and, as per the ‘mature minor’ rule, are: “capable of fully appreciating the nature and consequences of medical treatment [and] can give legally effective consent”

In some jurisdictions, becoming a mature minor is part of a formal legal process

Question 12

How should children be involved in medical decision making?

Answer 12

In a developmentally appropriate options and information such that they know what to expect and what is expected of them

For example: which arm they want the injection but not if they are going to have have the injection

Question 13

Is the authority of a SDM absolute?

Answer 13

No

In most jurisdictions, their decision-making authority is limited to interventions deemed to be medically necessary

Question 14

What are the obligations of the SDM?

Answer 14

Are obligated to act within the best interest of the patient
OR act in accordance with previously expressed wishes of a prior capable patient

If necessity of medical has not been established, or proposed treatment involves personal preference, then intervention should be deferred until patient is capable

Question 15

What are the three factors necessary to make sure the decision meets the best interest standard?

Answer 15

1) using the best possible information to assess and maximize an incapable patient’s long-term benefits and to minimize any corresponding burdens
2) choices made using this standard must meet a minimum acceptable threshold of care, as judged by the Reasonable Person Standard
3) SDMs must act in accordance with accepted moral and legal duties to their ward

Question 16

What is family-centered, shared decision-making?

Answer 16

The values and beliefs expressed by the patient and family can also be guided by the medical knowledge and experience of HCPs to determine and promote the best possible treatment for an incapable patient

This does not replace the primary authority of parents as SDMs but rather, it acknowledges the expertise and input of health care team members, while supporting decision-making authority within the family

Question 17

What should decision making at the end of life focus on?

Answer 17

Maximizing patient comfort

Minimizing patient harm

Question 18

When may it be appropriate to withhold or withdraw life sustaining care?

Answer 18

1) Progression to death is imminent or irreversible
2) Proposed interventions are ineffective or likely to result in greater harms than benefits
3) Interventions only prolong the dying process, and discontinuing them would allow for better provision of palliative care

Question 19

What duty to have to patients who are at end of life?

Answer 19

Provide good quality palliative care!

Question 20

List 3 situations in which SDM and HCP may have conflict around medical decision making

Answer 20

• Financial constraints
• Needs of other family members or scarcity of supportive resources
• Moral, religious, or cultural beliefs

Question 21

What should be done if there is a serious conflict between SDM and HCP?

Answer 21

• Defer decision if possible
  “if circumstances permit, the proposed intervention should be delayed while an attempt at resolution is made in the current clinical setting [23]. This step may involve further discussions and/or referral for a second, independent medical opinion”
• Ask for help from other specialists
  “Consulting with a spiritual care leader, social worker, patient relations expert, bioethicist or a bioethics committee, or with institutional or personal legal counsel, is often a useful step in complex cases”

Question 22

What should be done if there is a serious conflict between SDM and HCP in the case of life threatening illness?

Answer 22

• Report to Child Welfare* this is mandated in most jurisdictions

Question 23

What should be done if there is a serious conflict between SDM and HCP in the event of a medical emergency?

Answer 23

“In the event of a true emergency, where time does not permit an HCP to access the options described, the ethical principles of beneficence and nonmaleficence, as well as laws under the emergency doctrine, permit the provision of emergent life-sustaining interventions”

Being truthful and transparent throughout the process is vital to ensuring relations with the family and for meeting the best interests of the patient

Documentation of the medical situation as it progresses and of all meetings about the child’s care must be impeccable and current

Question 24

Is a HCP legally obligated to provide care when they feel that the treatment is inappropriate?

Answer 24

They are not legally obligated to treatments they feel are inappropriate

Question 25

How is medical futility defined?

Answer 25

Medical futility is difficult to define, and careful consultation with appropriate medical, legal and ethical experts may be warranted before declaring a treatment option to be inappropriate [34]. Once a treatment has begun, it is generally considered to be part of the patient’s care plan; any subsequent decision to limit or withdrawal that treatment requires informed consent

Question 26

When resources are scarce, to whom does a physician have their obligation?

Answer 26

To their patient first