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HLSC220:
Health Care
Ethics
The controversial case of Ashley X (Tutorial 1)
ELECTRONIC WARNING NOTICE
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An overview of Module 1
During your exploration of Ashley’s case you will:
Analyse information from key stakeholders and consider possible
courses of action
Integrate the findings from the analyses with information from ethical
theories and principles to reach an ethical conclusion
Reflect on the role of health professionals and healthcare ethics
committees in ensuring that ethical healthcare is provided to all people.
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The IBL cycle
(Hmelo-Silver & Eberbach, 2012)
Problem
scenario
Identify facts
Generate
hypotheses
Identify
knowledge
gaps
Engage in
self-directed
learning
Apply new
knowledge
to Problem
Evaluate
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What do we know? Why is this important?
• First, list the key information
about Ashley (i.e., what do we
know?)
• Your scribe might like to use a
table format (below) to your
record discussion.
• Next, discuss why you
thought this information was
note-worthy (i.e., why is this
information important?)
• What are the presenting
problems for Ashley?
What is the key information? (in small groups)
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Identify
facts
Key Information | Why (Rationale) | Presenting problems |
• First, generate some
hypotheses (i.e., what are you
thinking the doctor might do?
• Your scribe might like to use a
table format (below) to your
record discussion.
• Hypothesis |
Rationale |
• Second, what is your rationale
for your hypothesis?
What are we thinking? (in small groups)
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Generate
hypotheses
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What don’t we know? How can you find this out?
• What further information do
you need about ethical
practices and principles to
understand the case?
• How will you fill these gaps in
your knowledge?
• Identify learning issues that
you need to research.
• Your scribe might like to use a
table format (next slide) to
your record your discussion.
What don’t we know and how can we find out?
(in small groups)
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Identify
knowledge
gaps
In considering Ashley’s case, a number of issues/concerns were
raised (see below).
• Concerns About Ashley’s Well-Being
• Concerns About the Nature of the Intervention
• Social Concerns: Implications for Others and Third-Party Interests
• Concerns About Discrimination
• In your group, identify a maximum of 5 learning issues that you
want to explore.
• Write your learning issues as questions that you will research
and allocate one learning issue to each group member.
Refining your learning issues (small groups)
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Engage in selfdirected
learning
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Review: Expectations and group rules
• Identify a student who will take on the role of Scribe.
• The Scribe will take notes of the small group’s
discussion and reports this back to the main group. The
scribe also sends the notes to the group within 24 hours.
• All students are expected to contribute to the
discussions.
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“Hi Dr Gunther, it’s Ashley’s Mum here. I’ve just been
thinking about some of the things we were chatting about
at our last appointment…about Ashley’s continued growth,
and puberty commencing… and it’s got me a little worried. I
mean… her cognitive, mental and physical ability are that of
a three month old, and she’s totally reliant on her dad and
me for everything. How will she cope with these physical
and emotional changes? I was talking to Ashley’s dad and
we’re wondering if we could chat with you about options
like surgery or hormone injections to stop her growth and
avoid all the bodily changes of puberty. I know this is
probably not common but… Please let us know when we can
make a time to meet”
Trigger
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Questions for reflection
Why might Ashley’s parents request this?
What factors should the GP consider in replying to Ashley’s
parents?
What ethical considerations are relevant to your answers?
(NB: If you’re uncertain, make this a learning issue and make sure you engage
with session 2 materials!)
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“The patient is a 6‐year‐7‐month‐old white female initially referred to the pediatric
endocrine service for early pubertal development. She had been the full‐term product of an
unremarkable pregnancy followed by an uncomplicated birth. After the first month of life,
she began to display symptoms of hypotonia, feeding difficulties, choreoathetoid
movements, and developmental delay. Extensive subsequent evaluation by specialists in
neurology, medical genetics, and developmental pediatrics failed to uncover a specific
cause. Static encephalopathy with marked global developmental deficits eventually was
diagnosed.
In the ensuing years, her development never progressed beyond that of an infant. At the
age of 6 years, she cannot sit up, ambulate, or use language. She is gastrostomy‐tube
dependent for nutrition. However, she clearly responds to others— vocalizing and smiling
in response to care and affection. The combined opinion of the specialists involved in her
care is that there will be no significant future improvement in her cognitive or neurologic
baseline. Since birth, the patient has been cared for in the home by her parents, both of
whom are college‐educated professionals. She has 2 healthy siblings. Despite her severe
disability, she clearly is an integral, and much loved, member of the family.
Ashley’s case continued
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…After some probing, it was clear that the onset of puberty had awakened
parental fears for their daughter’s long‐term future. The parents particularly
feared that continued growth eventually would make it untenable for them to care
for their daughter at home, despite their strong desire to do so. They were
concerned that care might eventually have to be “put in the hands of strangers.”
There were also concerns about the complications of puberty, particularly the
onset of menses. After extensive consultation between parents and physician, a
plan was devised to attenuate growth by using high dose estrogen and to reduce
the long‐term complications of puberty in general, and treatment adverse effects
in particular, by performing pretreatment hysterectomy.
Because a growth‐attenuating treatment regimen is unconventional, and bound to
be controversial, the case was referred to our institutional ethics committee.”
(GP notes – taken from: Gunther & Diekema, 2006)
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Questions for reflection
Should doctors provide the surgery and treatment for Ashley that
her parents desire?
What ethical principles are relevant to your answer?
(NB: If you’re uncertain, make this a learning issue and make sure you engage
with session 2 materials!)
What role, if any, should a hospital committee have in deciding
treatment decisions ?
Directorate | Office | Faculty | School 14 |
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Some suggestions:
What are ethical principles? (and which apply in this case?)
What do medical codes of ethics state? (and how could they guide
decision-making in such cases?)
What rights exist for people with disability in health settings?
What are the other treatments available?
What services/supports are offered to families who care for children
with complex needs?
Learning issues: Questions
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In the next session:
• Aim to provide a
synthesis of your
findings.
• Explain how your
findings apply to Ashley’s
case
Research your learning issues
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Apply new
knowledge to
problem
Evaluate
Problem
scenario
Identify facts
Generate
hypotheses
Identify
knowledge
gaps
Engage in selfdirected
learning
Apply new
knowledge to
Problem
Evaluate
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