Beatrix Watson was five years old when she told a female doctor she would not take off her underwear unless her mother was in the room. Despite the need for a physical examination, however, the doctor discussed options with Beatrix's father, who had taken her to the appointment and made time to see the child with her mother the following day. "She was extremely respectful of my daughter's boundaries," said Beatrix's mother, Charlotte Watson of Vancouver.
Gone are the days when kids had no say at the doctor's office. In fact, children should have opportunities to participate in decisions about their own health starting at a young age, according to a recent policy statement from the American Academy of Pediatrics. The paper, published in August, is yet another sign that medical practice is catching up with laws that empower mature minors to give informed consent – a cornerstone of patient-centred care.
In Canada, provincial legislation dating to the mid-1990s gives children, depending on their mental capacity, the right to accept or refuse medical treatments. In most provinces, a 14-year-old can decide to go on Ritalin, get a prescription for birth control or have a mole removed, with or without a parent's consent.
As the balance of power shifts in favour of mature minors, however, thorny ethical issues continue to crop up in hospitals, examination rooms and the courts. Who has the power to decide whether a child is mentally capable of giving informed consent? Does a mature minor have a right to refuse life-saving treatments?
Despite these murky issues, there are steps parents can take to prepare their children for the complex decisions they may face in 21st-century medical care.
The Globe and Mail spoke with educators, physicians and bioethicists about how parents can help children learn to make informed choices and practise getting involved in their own health care at each developmental stage.
From the start, parents should choose a doctor who talks to their son or daughter as a patient, rather than speaking as if the child is not in the room, said Dr. Aviva Katz, a pediatric surgeon and ethicist at Children's Hospital of Pittsburgh, and lead author of the AAP paper.
While children this age are too young to give informed consent, a physician should make every effort to obtain a child's assent – an expression of agreement. Taking this step can help support "the moral growth and development of autonomy in young patients," Katz and her co-authors wrote.
Children are more likely to co-operate if they understand the reasons for a given treatment, and have opportunities to make choices along the way, Katz said in an interview. Even with a five-year-old, a nurse can ask if the child wants the IV in the left arm or the right. When prescribing medication, a pediatrician can offer a choice between bubblegum flavour or grape.
Children can express their wishes in psychiatric care as well, said Dr. Jana Davidson, psychiatrist-in-chief of the children's and women's mental-health programs at BC Children's Hospital. With a five-year-old patient, Davidson might ask, "Would you like to talk to me on your own, or would you like your parent to be in the room?"
A young child's options only go so far, of course. Katz cautioned against offering yes-no-propositions to patients who don't really have a choice, such as whether to have an appendix out. "If we're not going to take their advice on that," she said, "the child has been lied to – and that's not right."
At age 11 or so, most children are ready to meet with a physician on their own for part of a routine visit, Katz said. Parents can work on feeling okay with this, even if they don't trust a tween to remember everything the doctor said. By the time a son or daughter leaves home, Katz explained, "you want them to have learned how to speak to the physician and feel comfortable asking questions."
Dawn Campbell of Vancouver says her 10-year-old son Cayden, who has asthma and alopecia areata (hair loss), sees health-care professionals on his own when he goes for breathing tests at BC Children's Hospital. The staff ask him to fill out his own form, which includes questions about his breathing and how often he forgets to carry his inhaler. The paperwork helps to reinforce his role in managing his asthma, Campbell said, adding, "I do like that they include him on that, because he's 10, he's responsible and it's nice that they treat him that way."
Children under age 12 are seldom deemed mature enough to give informed consent. In Ontario, however, all individuals have this right automatically unless there are "reasonable grounds" to believe the person is mentally incapable, according to the province's Health Care Consent Act.
The legislation was a target of public outrage last year, when an 11-year-old Ontario girl, Makayla Sault, died after refusing chemotherapy to treat her leukemia. The girl and her parents had opted instead to put their faith in alternative and indigenous medicine.
One way to prevent such deaths – other than a legislative overhaul – could be to teach children the critical thinking skills they need to make informed choices. A team of researchers backed by Cochrane, an international organization devoted to evidence-based medicine, has developed educational materials designed to help kids aged 10 to 11 learn key concepts in medical decision-making .
At this stage, parents should start to see themselves as trusted advisers, rather than commanders-in-chief of a child's health care.
Children in mid- to late-adolescence should have "a lot more" decision-making opportunities, Katz said. If a 15-year-old girl has a breast abscess, for example, a physician could discuss options such as antibiotics, or inserting a needle to drain pus. Katz would explain the evidence to support each intervention, she said, and then ask, "What would you prefer that we do?"
In Canada, the concept of mental maturity has largely replaced chronological age in determining whether a young person has the right to consent to, or refuse, a medical treatment (other than in Quebec, where the age of consent is 14 years and older).
The major exception is medical assistance in dying, which Bill C-14 states may be provided only to Canadians at age 18 and up.
Normally, it is up to the physician to determine whether a child is mentally capable of providing consent. The physician should be "reasonably confident" that the child understands the nature of the proposed treatment and its predicted effects – and the consequences of refusing treatments, according to the Canadian Medical Protective Association, a not-for-profit association that advises physicians on legal matters. If a physician determines, based on discussions with the child, that he or she can make an informed decision, "parental consent is not required," writes the CMPA.
Nevertheless, the organization cautioned that in complex medical situations, it is "prudent" for physicians to encourage mature minors to include family members in decision-making.
Even if parents and adolescents are on the same page, however, Canadian courts may rule against a minor's wishes if rejecting a treatment could lead to the child's death. In 2006, Manitoba courts decided that a doctor could give blood transfusions to a 14-year-old girl despite the objections of the patient, who was a Jehovah's Witness, and her parents.
Dr. Kerry Bowman, a bioethicist at the University of Toronto, described a system that abandons the legal principle of informed consent, in cases where the patient disagrees with health-care providers, as "ethically problematic."
A more progressive approach – and the one the AAP recommends – is to thoroughly evaluate individual patients in terms of their mental capacity, regardless of their chronological age, Bowman said. "If you're going to respect the rights and choices of your patient," he said, "this is the way to do it."