Treatment decisions regarding infants, children and adolescents

Question 1

What are some principles regarding treatment decisions in pediatrics?

Answer 1

1. All infants, children and adolescents – regardless of physical or mental disability – have dignity, intrinsic value, and a claim to respect, protection, and medical treatment that serves their best interests.
2. Although family issues are important and must be considered, the primary concern of health professionals who care for children and adolescents must be the best interests of individual children and adolescents.
3. Decision-making for children and adolescents should be interdisciplinary and collaborative, and should actively involve the family and, when appropriate, the child or adolescent.
4. Children and adolescents should be appropriately involved in decisions affecting them. Once they have sufficient decision-making capacity, they should become the principal decision maker for themselves.
5. All information presented to patients, families, or the child or adolescent’s legal guardian should be truthful, clear and presented with sensitivity. This information should include evidence available in the literature, and the clinical experience of the physician and his or her colleagues.
6. A physician’s personal and professional values can influence patients and families. The reflective practitioner is aware that personal values should not be allowed to restrict or bias such things as options offered to patients or families.
7. The principal obligation of the physician is to the individual patient rather than to society or the health care system. Physicians should act as advocates for their individual patients when scarce resources seem to limit access to care.

Question 2

What are the three hallmarks if informed choice?

Answer 2

1. Appropriate information to make a decision
2. Decision making capacity
3. Voluntariness

Question 3

What is a substitute decision maker?

Answer 3

Know the patient so well as to have already discussed with the patient what he or she would want done; a substitute’s role is to promote the patient’s expressed wishes

Question 4

What is a surrogate decision maker?

Answer 4

Do not know what the patient would want done and are thus charged to decide in the best interests of the patient

Question 5

When might a parent not be an appropriate surrogate decision maker?

Answer 5

1. when parents lack decision-making capacity.
2. when there are irresolvable differences between parents regarding the child or adolescent’s care.
3. when parents have clearly relinquished responsibility for the child or adolescent.
4. when a legal guardian has been appointed.

Question 6

What factors should consideration be given to in determining the best interests of a child or adolescent?

Answer 6

1. chances of survival;
2. the harms and the benefits of treatment;
3. evidence regarding long- and short-term medical outcomes of the treatment;
4. long-term implications for the child or adolescent’s suffering and quality of life.

Question 7

What is the standard of reasonableness?

Answer 7

This standard asserts that the best option is one that most rational people of goodwill would choose after full consideration of all factors that influence the situation

Question 8

What is the recommendation in an acute situation when treatment cannot be deferred or delayed and circumstances have not been clarified?

Answer 8

Presume in favour of life-saving or life-sustaining treatment

Question 9

What is the recommendations regarding disclosure of medical information to the child?

Answer 9

They should receive developmentally appropriate information and their desire or need for information is paramount over parent’s views regarding disclosure

Question 10

What should be used to allow children to participate in making decisions?

Answer 10

Assent

Question 11

What is the ability of infants and young children to participate in decision making?

Answer 11

None

Question 12

What is the ability of primary school age children to participate in decision making?

Answer 12

May participate but do not have full decision making capacity. They can provide asset but cannot provide consent.

Strong or sustained dissent should be taken seriously

Question 13

What is thee ability of adolescents to participate in decision making?

Answer 13

Developing the decision-making capacity of adults

Question 14

What is an emancipated minor?

Answer 14

No longer dependent on their parents and are supporting themselves or living independently from their families

Question 15

What is a mature minor?

Answer 15

Persons who, regardless of their age, are able to understand their health condition, and appreciate the nature and consequences of proposed treatment options

Question 16

What are Canadian laws of consent?

Answer 16

Variable, but the mature minor principle is applicable everywhere

Question 17

When is withholding or withdrawal of treatment considered?

Answer 17

1. there is irreversible progression to imminent death;
2. treatment is clearly ineffective or harmful;
3. life will be severely shortened regardless of treatment, and the limitation or withdrawal of interventions will allow greater palliative and comfort care;
4. lives will be filled with intolerable distress and suffering that cannot be prevented or alleviated.

Question 18

Who should be involved in decisions regarding withdrawal of care?

Answer 18

Members of the interdisciplinary team
Ethics committee
Family
Patient

Question 19

What should be done if the parents refuse to limit treatment that the health care team believes is not beneficial?

Answer 19

In this situation, if the health care team, an ethics committee or consultant (if available), and an uninvolved medical consultant all agree that treatment is contrary to the best interests of the child or adolescent, a legal opinion may be sought with consideration toward a legal appeal to apprehend medical decision-making for the child or adolescent

Question 20

What to do when physician and health care team feel the parent’s decisions are inconsistent with the child’s best interest?

Answer 20

Involve an ethics consultant and consider involvement of child protection and legal system

Question 21

What are the recommendations?

Answer 21

1. Physicians should provide patients and their families with appropriate and sufficient information so that they can participate effectively in decision-making.
2. Physicians should work with other members of the health care team to assist surrogate or substitute decision makers in making decisions that are based on the patient’s best interests.
3. Some children and adolescents have the ability and desire to make their own decisions. Physicians should carefully assess these factors, encourage decision-making by patients, families and the health care team together, and support capable patients who wish to make their own decisions.
4. Disclosure of information and inclusion in decision-making should occur according to the stage of the child or adolescent’s development. Respect for parental wishes and values is important, and the needs and interests of the child or adolescent should prevail.
5. End-of-life decisions should be made with the comfort of the dying child or adolescent as a constant focal point. There are no exceptions to the obligation to provide palliative and comfort care, including attention to symptom control and the emotional, psychological and spiritual needs of the patient and their family.
6. In situations of conflict, physicians have an obligation to seek available resources to help resolve that conflict, and to facilitate patients’ and families’ access to assistance as well.