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Rels 300 / Nurs 330

15 October 2014

Competence in Childrenand Adolescents

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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

http://www.collectionscanada.gc.ca/eppp-archive/100/201/300/cdn_medical_association/cmaj/vol-156/issue-6/0825.htm

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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?

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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

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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?

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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; deathWhat 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

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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

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… 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?

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Possible reasons for limitingchildren’s autonomy

1. present day autonomy may not fully preserve life-time autonomy for the child

2. children’s decisions are based on limited life experiences

decisions may be impetuous

3. child’s decision may conflict with family interests and goals

yet child will still live with and be supported by his or her family

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How should disagreementsbe 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?

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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

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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

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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

http://www.cps.ca/english/statements/B/b04-01.htm

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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

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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?

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Girl

refuses a transfusion

has a “passionate” desire not to die

claims she is capable of making her own decision

blood transfusion against her beliefs

Court girl is mature enough to make an

informed decision knows that refusal could lead to

death agreed that the decision was hers to

makeBUT – 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

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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

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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

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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.

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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

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Father 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

Mother 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

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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.

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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

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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: http://www.cbc.ca/canada/calgary/story/2008/06/20/jehovah-dismiss.html#ixzz12B7CJ0dy

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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?

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POSITION STATEMENT:Treatment decisions regarding

infants, children and adolescents

General principles of treatment decision-making and informed consent:1. Appropriate information: The information necessary to make a decision.2. Decision-making capacity: The ability to receive, understand and

communicate information, and the appreciation of the personal effects of interventions, alternatives or nontreatment.

3. 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.”

http://www.cps.ca/en/documents/position/treatment-decisions