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

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 300/330 - appleby

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

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

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

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

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

… 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

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

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

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

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

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 300/330 - appleby

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

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

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

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

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

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

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

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

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

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

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: http://www.cbc.ca/canada/calgary/story/2008/06/20/jehovah-dismiss.html#ixzz12B7CJ0dy 300/330 - appleby

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

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.” http://www.cps.ca/en/documents/position/treatment-decisions 300/330 - appleby