Download 1.5.1 Medical Decision-Making and Children

1.5.1 Medical Decision-Making and Children
Samantha Brennan, PhD
Updated December 11, 2013
Learning Objectives
1. To understand the basis of a child's right to have a say regarding his or her medical treatment
2. To consider what ought to happen when a child's view regarding treatment differs from that of his or her
parents
Case
Amanda Parker is a 10-year-old girl who was injured in a fire in which she suffered second degree burns on one of
her legs. After some initial healing while in the care of the hospital's burn unit, Amanda underwent skin graft
surgery and stayed in the hospital for two weeks while recovering. A year has passed now since the accident, and
Amanda's surgeon has followed up on Amanda through the burn unit's outpatient clinic. The surgeon is now
presenting Amanda and her family with the option of a second surgery. This surgery will involve a second graft,
and its primary purpose is to improve the appearance of the scar tissue. Amanda's parents are quite keen to
proceed with the surgery, fearing that their daughter will suffer long-term consequences from living with burn
scars. They find the scars difficult to look at and want Amanda to be able to lead a normal life, wearing a bathing
suit at the beach for instance, without attracting the attention and pity of strangers. Amanda has a different
opinion. She thinks that the pain of the surgery and the hospital stay outweigh the benefits. She is an articulate
child who says that she doesn't care so much what her leg looks like or what other people make of her
appearance. She presents her opinions forcefully, but her parents still want the surgery to proceed. They think that
she will change her mind about how much appearances matter and that the pain and inconvenience of surgery will
fade over time.
Questions
1. What course of treatment is in Amanda’s best interest? What role does Amanda play in deciding this?
2. Of all the parties involved, other than Amanda, Amanda’s parents know her best. Does this knowledge give
them the right to decide for Amanda?
3. What difficulties appear when the parents do not appear to be acting in the child’s best interests? When can
the parents’ choices be overridden?
4. How old should children be before they get to make decisions regarding their medical care?
5. What are the dangers, if any, in approaching this as a "family decision"?
6. What "compromise" options are available to Amanda and her parents? How can physicians help the family
move to a compromise?
Discussion
Q1. What course of treatment is in Amanda's best interest? What role does Amanda play in deciding
this?
The ethical demands posed by patient involvement in medical decisions are well-established. Clinicians are obliged
to provide appropriate information to help guide their patients' autonomous choices. More difficult are questions
involving children in decision-making. The standard of care for decision-making on behalf of children is taken to
be, in this and in most other arenas of life, the child's best interest. The problem with the notion of best interests is
that it is inevitably a value-laden test. Even among those philosophers whose research expertise includes theories
of well-being, there is no settled view about what constitutes the best sort of life for a person to lead. Given the
widespread disagreement among philosophers and the deep reality of pluralism in our world, we usually leave
individuals to choose for themselves what is best. However, it is less clear in the case of children that they are the
best judges of their own interests.
In the distant past, parents and doctor decided on behalf of children, even quite old and mature children, but the
past 20 years have seen a move to involving children more in medical decision-making. Even if children are not
capable of giving full-blown consent to medical treatment, medical practice has recognized their capacity to assent,
that is, to give affirmative agreement to treatment. Assent is sought even when very young children are involved.
Assent is the child's agreement to a particular course of treatment, and it typically requires less capacity for
decision-making and usually concerns details such as the kind of care or treatment. For example, a child's assent
may take the form of a decision to take a particular medicine in pill or liquid form.
Q2. Of all the parties involved, other than Amanda, Amanda's parents know her best. Does this
knowledge give them the right to decide for Amanda?
Parents, as surrogate decision-makers, may have a difficult time separating their own perception of what is best
for the child from what the child thinks is best, and from what they think is best for themselves. For example,
Amanda's parents may think that Amanda's views about what is best will change with time. They may think
reasonably that she may come to care more about the appearance of her scars as she grows older. However, they
may also have preferences that are really preferences about their own life — such as preferring to parent a child of
normal appearance — and it is difficult for doctors to sort out Amanda's best interests from her parents'
perceptions of those interests. It looks like the only way is to give significant weight to Amanda's own view about
what is best. That being said, issues remain about the age at which to involve children and how much weight to
give to their wishes.
Q3. What difficulties appear when the parents do not appear to be acting in the child’s best interests?
When can the parents’ choices be overridden?
Sometimes it may be clear that parents are making decisions that are not in the child’s best interest. In such cases
it may be possible to override the parent’s decisions. For example in September 2012 the Alberta court of appeal
upheld a ruling to remove a 2 year old child from life support over the wishes of her parents who were charged
with beating and starving her. Note that in this case the doctors were unable to determine what the child wanted
and she was a very young child unable to understand the decision she would have been making. In a case such as
Amanda’s the choice is between Amanda’s decision and the decision of her parents, when opinions about how best
to proceed diverge. The decision need not appeal to Amanda’s best interests independently of these choices.
Q4. How old should children be before they get to make decisions regarding their medical care?
Doctors and ethicists alike worry about children's ability to understand medical information and to understand the
consequences of their decisions, about children's changing sense of self and values, and about their capacity to
reason. And of course these abilities and sense of self vary with age, as children grow and develop. Some people
use the designation "child" to refer to all people under the age of 18. Clearly, the group of people under age 18 is a
diverse group, and we do allow some members of that group to drive, to leave school and to consent to sexual
activity. The World Health Organization refers to the life stage between the ages of 10 and 19 years as
"adolescence" and, to further complicate matters, also defines "youth" as the life stage between the ages of 15 and
24. What is clear is that, if Amanda were 16, or even 14, most people would think her old enough to make her own
decisions about treatment. Likewise, if she were 4, or 6, we would leave all decisions to her parents. But Amanda
is in the awkward middle years of childhood where her capacity to make decisions is less clear, and further
conversations and consultation may be necessary. There is a common law and, in statute in some places, the
concept of a "mature minor." A mature minor is someone who, regardless of age, is found to be a minor capable of
making his or her own decisions. Some mature minors are also "emancipated minors" or children who, through
their life circumstances, early marriage or abandonment, are no longer in the care of parental authority.
Just as there is no single age to draw the line as to when children are mature enough to make their own treatment
decisions, the decision process itself is not an all or nothing matter. There are various ways to involve children in
the decisions regarding their medical care, and which methods are appropriate will depend on at least three
factors: what is at stake, how mature the child is and how much the efficacy of treatment depends upon the child's
cooperation. Where possible, all children, even the very young, ought to be involved in decisions about their care.
The Canadian Paediatric Society describes the following statement as one of the principles or assumptions of
discussions regarding children and decision-making: "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."1 The American Academy of Pediatrics likewise urges doctors to seek the
agreement of the child, to the greatest extent feasible, in addition to parental permission. The most difficult and
heart-wrenching cases are those in which the treatment the child wishes to refuse is necessary to preserve his or
her life. However, on those grounds, this case is an easy one in that what is at stake is relatively minor in the
scheme of things. One issue for consultation is what is lost in delaying surgery should Amanda choose to have
surgery later.
Q5. What are the dangers, if any, in approaching this as a "family decision"?
Some ethicists think that this focus on the question of who decides, the child or her parents, is too individualistic.
They argue that the child's best interests cannot be so easily separated from what is best for the family. This way
of reasoning leads to the conclusion that medical decision-making for children ought to be family-focused. In the
case of Amanda, one way to involve Amanda in decision-making is to involve her family, to treat the family as the
appropriate decision-making body. However, other ethicists worry that focusing too much on the family runs the
risk of ignoring the child's point of view, which is often swamped by the strong opinions of outspoken parents.
Also, how much parents let their children have a say in decisions will vary from family to family. The very family
that will not let their child make a particular decision is unlikely to easily yield the parental decision over to the
child in the context of family decision-making.
Q6. What "compromise" options are available to Amanda and her parents? How can physicians help the
family move to a compromise?
In Amanda's case, physicians may choose to meet with Amanda and her parents and lay out the options as clearly
as they can, focusing on the health benefits of surgery (for example, whether the graft will help Amanda attain full
functioning of the affected area) and separating these, where possible, from the social benefits. If the physicians
involved in Amanda's care are not able to affect a resolution, then family counselling may well be advised.
However much family counselling may help Amanda's family come to understand her perspective on her medical
care and the decision to forgo surgery, counselling is no substitute for Amanda's having a real place in the
decision-making process. Ideally, medical decisions should be collaborative and include those medical practitioners
caring for Amanda, her family and Amanda herself. One possible resolution in this case is delaying treatment
slightly to give Amanda and her parents more time to think and talk about the issues involved.
References
1. Bioethics Committee, Canadian Paediatric Society. Treatment decisions regarding infants, children and
adolescents [Reference No. B04-01; reaffirmed February 2008]. Paediatrics & Child Health 2004; 9(2): 99–
103. Available from: http://www.cps.ca/english/statements/B/b04-01.htm
Resources
Baylis F. The moral weight of a child's dissent. Ethics Med Pract 1993; 3(1)L 2-3.
Brock DW. Children's competence for health care decisionmaking. In: Kopelman LM, Moskop JC, editors.
Children and health care: moral and social issues. Dordrecht (Holland): Kluwer Academic Publishers; 1989. pp.
181–212.
Dickens BM, Cook RJ. Adolescents and consent to treatment. International Journal of Gynaecology and
Obstetrics 2005; 89:179–84.
Harrison C, Kenny NP, Sidarous M, Rowell M. Bioethics for clinicians: 9. Involving children in medical decisions.
CMAJ: Canadian Medical Association Journal 1997; 156(6): 825–8. Available from:
http://www.cmaj.ca/cgi/reprint/156/6/825.pdf
Miller V, Drotar D, Kodish E. Children's competence for assent and consent: a review of empirical findings.
Ethics & Behavior 2004; 14(3): 255–95.