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HLSC220:
Health Care
Ethics
The controversial case of Ashley X (Tutorial 2)
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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At the Ethics Committee meeting, Ashley’s parents provided the following information:
“Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by
herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way…
She is expected to live a full life and was expected to attain a normal adult height and
weight. Ashley’s health being in a stable condition… Ashley is alert and aware of her
environment…She constantly moves her arms and kicks her legs. Sometimes she seems to be
watching TV intently. She loves music and often gets in celebration mode of vocalizing,
kicking, and choreographing/conducting with her hands when she connects with a song…
Ashley goes to school in a classroom for special needs children, which provides her with
daily bus trips, activities customized for her, and a high level of attention by her teachers
and therapists.
Ashley has a sweet demeanor and often smiles and expresses delight when we visit with
her, we think she recognizes us but can’t be sure. She has a younger sister and brother. As
often as we can we give her position changes and back rubs, sweet talk her, move her to
social and engaging places, and manage her entertainment setting (music or TV).
New Information
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The chance of Ashley having significant improvement, such as being able to change her
position in bed, let alone walk, is non‐existent. She has been at the same level of cognitive,
mental and physical developmental ability since about three months of age. Ashley has
aged and grown in size but her mental and physical abilities have remained and will remain
those of an infant….
The central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are
discomfort and boredom. Ashley will be a lot more physically comfortable free of menstrual
cramps, free of the discomfort associated with large and fully‐developed breasts, and with a
smaller, lighter body that is better suited to constant lying down and is easier to be moved
around. Ashley’s smaller and lighter size makes it more possible to include her in the typical
family life and activities that provide her with needed comfort, closeness, security and love:
meal time, car trips, touch, snuggles, etc. Furthermore, given Ashley’s mental age, a nine
and a half year old body is more appropriate and provides her more dignity and integrity
than a fully grown female body.”
Concerns were expressed by members of the Ethics Committee. Some members queried
the right of staff to not participate in delivering the treatment if they disagreed on ethical
grounds.
New Information
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Questions for reflection
What obligations exist for health professionals to be involved in
procedures that they may disagree with (i.e., conscientious
objection)?
(NB: If you’re uncertain, make this a learning issue and engage with session 3
materials!)
What ethical principles are relevant to your answer?
Directorate | Office | Faculty | School 7 |
“The Ethics committee met with the family, the patient, and the patient’s physicians and
carefully explored the family’s reasons for their request. After a lengthy discussion, the
committee reached consensus that both the requests for growth attenuation and
hysterectomy were ethically appropriate in this case” (Gunther & Diekema, 2006).
Prior to the Ethics Committee reaching their decision, Ashley’s parents needed to
investigate the legal issue of “sterilization” of a disabled person. They consulted a lawyer
and were advised “that the law does not apply to Ashley’s case due to the severity of her
disability, which makes voluntary reproduction impossible. Furthermore, sterilization is a
side effect of the Ashley Treatment and not its intent.”
However, “On behalf of Ashley, Disability Rights Washington investigated the case, in
particular to discern whether there had been a violation of Ashley X’s rights under state
law” (Kirschner, 2009, p.371).
Decision
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Questions for reflection
What role, if any, should a hospital Ethics Committee have in
deciding treatment decisions ?
What rights (of Ashley’s) might have been violated by the
Committee’s decision?
What ethical principles are relevant to your answer?
Directorate | Office | Faculty | School 9 |
In considering Ashley’s case, a number of issues/concerns were
raised.
• 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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Some suggestions:
• What approaches/frameworks exist to support ethical decisionmaking?
• What role to professional associations play in guiding and
monitoring the ethical decisions/behaviours of their members?
• What is “conscientious objection”?
• What laws exist to protect the rights of people with disabilities with
regards to medical/health interventions?
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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