1. Competence in Children and Adolescents
Rels 300 / Nurs 330
15 October 2014
300/330 - appleby

2. Involving Children in Medical Decisions
Christine Harrison, Nuala Kenny, Mona Sidarous, and Mary Rowell
This article is the Bioethics for Clinicians entry for medical decision-making and children
300/330 - appleby

3. Children’s capacity to consent to treatment
Infants and very young children
No decision-making capacity
Parents or guardians make decisions
What is in the child’s best interest?
If parents refuse to consent to a treatment which is clearly in the child’s best interest, the courts can assume the parental role and authorize the treatment
Examples?
300/330 - appleby

4. Primary-school children
Children are not likely to have full decision-making capacity
They are not yet mature in their physical, intellectual or emotional development
However, children may be able to participate in making medical decisions
Information appropriate to their age should be provided
Verbal assent to any treatment should be sought
Strong and sustained dissent should not be overruled lightly
300/330 - appleby

5. 11-year-old Samantha (case introduction)
If further treatment is imposed on Samantha, how is she likely to react?
What will this mean for her quality of life?
What are her chances of remission with treatment?
What will be the consequence of no treatment?
Because death is an “irreversible harm,” the level of capacity needed to refuse treatment is very high.
Does Samantha have this capacity?
300/330 - appleby

6. How to proceed?
What are the potential benefits to the child of chemotherapy?
benefits of no chemo?
What are the potential harmful consequences to the child?
Physical suffering; psychological or spiritual distress; death
What are the moral, spiritual, and cultural values of the child’s family?
If a decision is made to initiate chemo against Samantha’s wishes, what will this mean?
Read resolution of case
300/330 - appleby

7. Adolescents Many adolescents have mature decision-making capacities
Understand and communicate relevant information
Think and choose with some independence
Assess risks, harms & benefits; consider alternatives and consequences
Have fairly stable personal values
Parents should be viewed as consultants
300/330 - appleby

8. … on the other hand
adolescents can be impulsive, immature, unable to assess short term vs. longer term goals
adolescents may be unduly influenced by parents and obedience/non-compliance issues
or by conformity/acceptance peer issues
Is there a uniform age of competence to consent in Canada?
300/330 - appleby

9. Possible reasons for limiting children’s autonomy
present day autonomy may not fully preserve life-time autonomy for the child
children’s decisions are based on limited life experiences
decisions may be impetuous
child’s decision may conflict with family interests and goals
yet child will still live with and be supported by his or her family
300/330 - appleby

10. How should disagreements be resolved?
If parent and child disagree, should the physician side with one or the other?
under what conditions might this be appropriate?
when might this be inappropriate?
Is it less an issue of respecting the child’s autonomy, and more about determining what is best for the child?
who is likely to be the better judge of this?
300/330 - appleby

11. What’s the law in Canada?
differs by province
some prescribe an age of consent
others provide for an assessment of capacity
children may be designated as “mature minors” for purposes of making their own decisions
in NS, a child may not give autonomous consent until the age of majority = 19
300/330 - appleby

12. Decisions for children
Parents are morally and legally responsible for the well-being of their children
they are regarded as decision makers for their children unless:
the parents are themselves incompetent;
the parents have unresolvable differences;
the parents are abusive or neglectful in caring for the child
300/330 - appleby

13. If a treatment is clearly in the child’s best interests, and parents refuse treatment, then a court order may be sought to provide treatment.
If a treatment is unlikely to be helpful, then no court order is needed to withdraw treatment.
If a child’s best interests are uncertain, a 2nd opinion should be sought.
If there is disagreement, an ethics advisory committee should be consulted to assist with reaching a mutually acceptable decision.
see Treatment decisions for infants and children; Canadian Pediatrics Society, Bioethics Committee
300/330 - appleby

14. 14-year-old girl from Vernon, BC
8 apr 2005 – BC Supreme Court
Girl, being treated for leukemia, refused to have a potentially life-saving blood transfusion – against her religious beliefs
BC Child, Family & Community Services sought and were granted a court order to perform blood transfusion
claimed girl was too young to make this decision for herself
girl challenged the court decision
300/330 - appleby

15. What ruling should the BC Supreme Court make?
girl has cancer
she has already had surgery, chemotherapy, and survived a blood clot on her heart
claims she is “fully competent to make my own decisions”
seeking to be recognized as a “mature minor”
What ruling should the BC Supreme Court make?
300/330 - appleby

16. Girl Court girl is mature enough to make an informed decision
knows that refusal could lead to death
agreed that the decision was hers to make
BUT – the govt. has a stronger obligation to preserve the girls’ life
 transfusion should be done
+ freedom of religion is not an absolute – cannot override her right to life
refuses a transfusion
has a “passionate” desire not to die
claims she is capable of making her own decision
blood transfusion against her beliefs
300/330 - appleby

17. What happens next?
Mom, Dad & 14-yr-old cancer patient travel to Ontario
could doctors at Sick Kids’ Hospital treat her without a transfusion?
doctors said that they could try to do that, but they would need to retain the option of performing a transfusion if needed to save her life
an Ontario court judge orders the family to return to BC where the girl is under the guardianship of the BC government
300/330 - appleby

18. An agreement is reached
following the family’s return to BC, an agreement was reached involving the director of Child, Family & Community Service, the teenager, her parents and the Vancouver hospital
the girl would receive her chemotherapy treatment at a bloodless treatment centre in New York
after 3 months of treatment, she returned to British Columbia near the end of August
300/330 - appleby

19. When she returned to Canada, she told reporters that she hoped her experience would create change in the Canadian medical system.
"I hope that other doctors and hospitals will learn from this experience [in New York]," she said. "They've treated me as a woman and not as a child."
In 2009, at age 19, Sarah died from her leukemia.
300/330 - appleby

20. The case of Bethany Hughes
diagnosed with leukemia at age 16
in Alberta, this age is under the age for legal consent
doctors at the Alberta Children’s Hospital found her to be competent to make her own treatment decisions
Bethany refused to consent to blood transfusions
parents were divided on this
300/330 - appleby

21. Father
Mother
Jehovah’s Witnesses refuse blood products for religious reasons
but if the only way to save her life was to proceed with a transfusion, then Bethany should receive a blood transfusion
Bethany (at 16) is vulnerable to social pressures of her religious community
in keeping with teachings of Jehovah’s Witnesses, Bethany should not receive blood products
Bethany is old enough to hold these beliefs for herself
Bethany should have the right to refuse blood
300/330 - appleby

22. Why is this so important?
was Bethany old enough for legal consent?
was she assessed as capable to give her own consent, or as incompetent?
what ethical considerations can be used to decide whether Bethany’s refusal of blood products should be respected?
did her doctors support her right to make her own choice?
why did the Alberta court take this right away from her?
The judge ruled that her refusal to consent was not free; she was coerced by her religious beliefs and community.
300/330 - appleby

23. Alberta’s Attorney General
stepped in to gain temporary custody of Bethany
given 38 blood transfusions against her will and without her consent
Each time, she tried to pull the medical tubes from her arms while she was bedridden at Alberta Children's Hospital in Calgary
only when it became clear that the treatments were ineffective (and she was going to die) were the blood transfusions stopped
300/330 - appleby

24. Bethany died in September of that year (2008).
What Happened Next?
Bethany’s lawyers filed an appeal with the Supreme Court of Canada
the Court refused to hear the case
Bethany died in September of that year (2008).
Read more:
300/330 - appleby

25. What does this mean? no one really knows
most bioethicists and most Canadian physicians would have supported Bethany’s right to refuse blood transfusions because she was determined to be competent to make a mature and informed decision
many bioethicists and physicians would have supported Bethany’s choice even if neither of her parents supported her
Many teenagers currently receive medical treatment (including contraception and abortion information and services) prior to any age of consent – will this situation be forced to change?
300/330 - appleby

26. POSITION STATEMENT: Treatment decisions regarding infants, children and adolescents
General principles of treatment decision-making and informed consent:
Appropriate information: The information necessary to make a decision.
Decision-making capacity: The ability to receive, understand and communicate information, and the appreciation of the personal effects of interventions, alternatives or nontreatment.
Voluntariness: The decision maker should not be manipulated or coerced, and the option to change one’s mind should always be available.
“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.”
300/330 - appleby