14/03/2023
1
HLSC220:
Health Care
Ethics
The controversial case of Ashley X (Tutorial 3)
ELECTRONIC WARNING NOTICE
2 |
1 2
14/03/2023
2
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.
3 |
“The Washington Supreme Court has held that a court order is required when
parents seek to sterilize their minor or adult children with developmental
disabilities. They furthermore recommended that before performing other
aspects of the “Ashley Treatment” on anyone with a developmental
disability…independent court evaluation and sanction should be required.
Finally, the court also recommended that the hospital ethics committee
include a disability rights advocate and bring in other appropriate experts in
developmental disability for future case deliberations” (Kirschner, 2009,
p.371).
One ethicist noted, “When parents consent to subject a child to
experimentation, they cannot do so on the grounds of the presumed and
merely hypothetical consent of the child… The issue here is proxy consent. This
means that Ashley’s parents as the consenting parties bore the obligation of
representing Ashley’s best interest, which they did not do. The treatment was
de facto a medical experiment, since its long‐term adverse consequences are
not known” (Coleman, 2007, p. 725).
Applying knowledge
4 |
3 4
14/03/2023
3
• For innovative medical treatment plans such as the Ashley Treatment, which are
predicated on beliefs about quality of life and involve a person with developmental
disability who will never be competent, what do you believe should be the appropriate
standards for medical decision‐making?
• Do you agree that involving disability rights advocate and other appropriate experts in
Ethics Committees provides appropriate and adequate safeguards? Why or why not?
• What other standards do you believe should be adopted?
Questions for Reflection (small groups)
5 |
In addition to the issue related of consent, ethicists also raised concerns about the failure
to recognize and uphold Ashley’s inherent dignity:
“Ashley’s parents and physicians often repeat that their goal was to improve her “quality
of life” rather than accommodate the parents and caregivers. [Her doctor] goes so far as
to claim that Ashley is unable to “experience any sense of indignity” since she lacks
“cognitive capacity.” Attributed dignity (cognitive capacity) is thus equated with inherent
dignity.
The testimonies of Ashley’s parents do not give evidence that Ashley’s inherent dignity was
considered. A child with static encephalopathy, while disabled, has intrinsic value and
sustains the rights of a human being. All children have claims on parents and society, even
when meeting these claims is costly, distressing, and burdensome. All human beings lay a
claim on us which is not conditioned by their mental, emotional, or physical attributes. The
fact that an infant cannot articulate his or her dignity is irrelevant. The intrinsic value and
the rights of a human being are not qualified by a person’s intelligence or physical
capacities….
Ethical Interpretation
6 |
Apply new
knowledge to
problem
5 6
14/03/2023
4
Disability and suffering do not lessen or eliminate human dignity. Intrinsic dignity remains
no matter what a person’s mental, physical, or social situation might be. Conceptions of
human dignity that are based on subjectivity, social worth, or freedom and control must be
rejected. Attributed dignity is overly emphasized in our society. It is based on value, worth,
power, prestige, function, productivity, and self‐control. Attributed dignity is not
comparable to intrinsic human dignity. To be a person is to have intrinsic dignity.
The main participants caring for Ashley did not consider her quality of life and inherent
dignity. They gave primary importance to their own assessment of quality of life in terms
of present and future convenience” (Coleman, 2007, p. 725).
Ethical Interpretation
7 |
• How does a focus on the inherent dignity of each person influence our response to
Ashley’s case?
• What options might be considered ethically appropriate and still uphold Ashley’s
inherent dignity?
Questions for Reflection (small groups)
8 |
7 8
14/03/2023
5
The publication of this case attracted an enormous amount of media attention and
numerous publications have been written in response. Many noted the issues at an
individual human level, and some also recognised the importance of society supporting
those who encounter challenges to enable them to make ethical decisions:
“Ashley’s case presents the enormous challenge faced by parents, caregivers, and providers
concerned about people with serious intellectual disability—how to provide humane and
effective care in the community without adequate societal supports. Society’s failure to
dedicate leadership and adequate resources for community care cannot be remedied by
resorting to medical fixes, such as drugs or surgery. However, if we believe it is unethical
and unjustifiable to use medical interventions to prevent the institutional placement of
people with serious disability, we need to advocate for and provide the resources and
supports that promote community living” (Stein, 2010, p.108)
Enabling ethics
9 |
• What resources and supports might promote community living for people with
significant disability?
• What ethical principles underpin our work as advocates?
Questions for Reflection (main group)
10 |
9
10