what-when-how
In Depth Tutorials and Information
otherwise.
52
There is increasing willingness among clini-
cians and parents/guardians to include capable minors
in decisions about their health care,
53
and growing evi-
dence that assent offers benefits for minors, including
practice in assuming independence for their health care,
enhanced perceived control, increased ability to cope
with treatment and reduction of anxiety.
54
As a child with OI like David gets older, he should
participate by assenting for treatment decisions and even-
tually become responsible for his own care. Children
with chronic disease frequently comprehend a tremen-
dous amount about their treatment and understand the
adaptations required to live with OI. Opportunities for
older children and adolescents to participate in decision-
making should be encouraged by clinicians and parents
alike as a means to educate the OI child to become an
independent and self-supporting adult.
such unfortunate instances, the transfer of care should
be respectful and not leave the patient and family
abandoned.
Role of Assent for Health Care Decision-Making
Pediatric cases offer challenges to the shared deci-
sion-making mode, due to the necessity of parental or
legal surrogates, best interest requirements and patient
assent. In
Case 2
decisions for the patient are appro-
priately made by his parent/guardian, since children
under the age of 18 years of age cannot legally give
informed consent for health care except in limited cir-
cumstances. However, there are benefits to engaging
minors in graduated levels of decision-making for their
own health care based upon a development approach.
The inclusion of children in health care decision-making
is known as assent, a practice that entails communicat-
ing with children about their illness and treatment in
language that they can understand and procuring their
permission to proceed with a treatment plan.
Children as young as 7 years of age express an interest
in understanding their illness, treatment and prognosis,
and they demonstrate a significant level of understand-
ing and ability to participate in decision-making. Current
standards for assent by children for health care decisions
accept that children from 7 to 14 years of age should
be involved in the relevant details of decision-making,
even as parent/guardians provide informed consent for
health care. From 14 to 18 years of age, given evidence
of capacity, adolescents and parents/guardians should
collaborate on decisions, and adolescents should make
decisions on their own behalf. In cases of disagreement
between adolescents and parents/guardians, consul-
tation or mediation is encouraged, and the decision of
the adolescent should prevail unless the law requires
ETHI
CAL ISSUES: SEVERE OI, A
DULT
While the issues in Cases 3 and 4 are quite differ-
ent, they actually present comparable ethical questions
that focus on principles of autonomy and justice or
fairness for adults with severe OI. It is more and more
common for clinicians to encounter patients with
requests based upon information gained from the
Internet, social networking, publications and alternative
health care options. Frequently, these patients challenge
their clinicians with perspectives on their own health
that are different from - or what they may believe is
superior to - that of their health care provider.
When health care decisions involve the level of
uncertainty exemplified by Cases 3 and 4, the shared
decision-making continuum described above is criti-
cal. The approach involved in these cases, as in all
CASE 3
Leah is a young adult with moderate to severe OI
who wants to become pregnant and is comfortable with
the potential risks to herself and her future child as
described in the lay literature and electronic sources. She
understands the risks well and remains steadfast and
outspoken regarding her wish to have children of her
own. What should the physician do?
CASE 4
Dan is a young adult with severe OI. His pelvis is
very deformed, and he is seeking hip surgery because
of ongoing hip pain; he read about the benefits on an OI
advocacy group site. The physician doesn't think the sur-
gery will be effective, and it may be harmful. How can
the physician work with Dan?
