PHLB09 – Lecture 3
Competence, decision-making and children
A few words about advance directives
The concept of informed consent
Standards for determining its obtainment
The interests of others
Christine Harrison, et al.: “Involving Children in Medical Decisions”
Informed Consent reflects respect for autonomy (of competent adult patients).
What about children?
How ought physicians and HCPs respond to the preferences and wishes of child
Can/should children participate in the medical decisions that affect them?
Adult models of informed consent assume that ―the patient is autonomous and has a stable sense
of self, established values, and mature cognitive skills‖ (30).
Do children have the relevant capacities?
Infants aren‘t capable of articulating underlying goals and values and to reason.
As children get older, it‘s plausible for them to make small decisions.
How do we decide for children?
Principle of autonomy?
We still think autonomy is important to children because they‘re still going to be adults.
We have to show respect for that developing capacity that they‘re capable of…
but how do we find out their autonomy level?
Principle of beneficence?
To secure the patient‘s best interest, let patients decide.
We think it‘s the role of the gov‘t and doctors to protect the best interest (paternalism),
but we also have a social role to protect the interests of children.
Is there some combination/balance that is preferable?
What if they should conflict?
Case study: (refer to Involving Children in Medical Decisions reading)
She may have maturity beyond her years, but because she only has 20%
chance of living, go through with chemo. The costs/benefits? – Prognosis
isn‘t very good, but 20% is still significant, and lung cancer is a bad way to
die, what are the chances that it will emerge elsewhere afterwards?
The child is on the cusp of adolescent maturity
Author suggests a family-centered approach, maybe the patient‘s interest
will weight a bit more (physician still has primary duty of care to the
patient) must assess the child‘s competency level to make certain decisions.
How do we determine the parent‘s competency level? May be clouded by
grief, shock, stress, etc.
Challenges: at what point does it become battery (abusive treatment) to the
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―A family-centered approach considers the effects of a decision on all family members, their
responsibilities toward one another and the burdens and benefits of a decision for each member,
while acknowledging the special vulnerability of the child patient‖ (30).
―Triadic‖ relationship between HCPs, parents, and child patient
What if the parents and child disagree
What is the physician disagrees with the parents?
Respect the child—the particular patient to whom HCPs have ―primary duty of care‖
―Allow the child to exercise choice in a measure appropriate to his/her level of
development and experience of illness and treatment‖ (30).
Affirm parents‘ responsibility and take seriously their concerns and wishes
Seek to harmonize the values of everyone involved
What does this really mean, and what does this approach look like in application?
Is harmonizing the interests/values of everyone always possible?
How might this model help inform our decision-making about Samantha‘s case?
Parents have the legal authority (generally) to act as the child‘s surrogate decision-makers:
Obligation to decide in the best interest of the child
HCPs who disagree that decision is in the child‘s best interest can appeal to the relevant
The appropriate level of involvement of children in medical decision-making will differ
depending on age, decision-making capacity, and potential harms.
The involvement of infants, primary-school, and adolescent minors will differ, but
(When appropriate) each should be given information appropriate to their
Strong consideration of their preferences (esp. dissent) – find out why
Can the ―process” standard of competence help us here?
How well does the patient‘s reasoning reflect the patients underlying aims and values?
What is the necessary level of understanding and reasoning?
How certain are we that the patient has met that level?
Standards set in accordance with expected costs/benefits of a decision
Costs/benefits evaluated with respect to a patient‘s known values/aims
When values/aims unknown, we evaluate with respect to to others‘ reasonable
assessment of harms/aims
Merits of process standard:
Evaluation involves balancing respecting patient autonomy and protecting patient from
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Can the ―process‖ standard help us determine the appropriate level of a child‘s participation in
Why or why not?
Children often do not yet have stable underlying aims/values – even if
they‘re able to articulate goals and values, might not reflect mature (adult) values
Process standard isn‘t the same to assess children as adults, not
Even when they do (to the extent that they do), paternalism might be appropriate
The parents‘ interests
The physician‘s special responsibilities to children
Canadian Medical Association: “Advanced Directives for Resuscitation and Other Life-Saving or
Anticipating ‗incompetence,‘ the currently ‗competent‘ can express wishes regarding medical decisions
Appointing a proxy decision-maker (if no advance directives or person was appointed)
How do surrogate decision-makers decide for the formerly competent:
(Sometimes—hopefully—as a written advance directive)
Ex. family, wife ―I know them, they wouldn‘t have wanted this‖ Ex. Terri Schaivo case
Ex. doctor ―If I were the patient, what would I do?‖
Ex. if there‘s no close friends/family
Use the principle of beneficence and balance those
Use the reasonable person standard.
―The CMA holds that the right to accept or reject any treatment or procedure ultimately resides
with the patient or appropriate proxy‖ (33)
Advance directives helpful tools for respecting patient self-determination
If you don‘t follow advance directive or have informed consent, even if acting in best
interest, may be battery, assault – barring certain cases.
Challenges and possible exceptions:
Advance directive is too specific and does not speak to actual circumstances that arise
Ex. if in total vegetative state, do not resuscitate. But if in transient state, what to do?
Advance directive is too general and too vague to provide proper guidance
Ex. advance directive only stated that didn‘t want to live without reasonable mind, but
when old with Alzheimer‘s, they‘re happy because without memories, what to do?
There are reasonable grounds to suppose the advance directive no longer reflects the patient‘s
wishes or that the patient‘s understanding was incomplete when written
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If person has both advanced directive and proxy, which trumps the other?
If advance directive is still relevant, then that‘s stronger
If proxy has appointed level of authority, in cases, that‘s stronger.