Dysphagia Management For School Children: Dealing With Ethical Dilemmas

2164 words - 9 pages

The Case of Hillary
Hillary is a 6-year-old with severe cerebral palsy
and cognitive disability. Hillary has been attending a
private school for children with developmental disabilities
and severe handicaps for the past 2 months.
According to her record, the student has a history of
oral-pharyngeal dysphagia with silent aspiration and
several bouts of pneumonia in the past 2 years. She has
a PEG tube by which she receives her nutrition, hydration
and medications.
One morning Hillary’s home-room teacher approached
the speech-language pathologist with a note
written on a prescription paper ‘ordering’ oral feeding
for Hillary while she is at school.
The speech-language ...view middle of the document...

Clinical ethics focuses on developing practical
solutions that comprise a range of acceptable
options. Speech-language pathologists should use ethical
principles, sound clinical judgement, legal guidance,
and optimal communication skills to navigate a
course of action for each individual ethics case. The
above case exemplifies some familiar tensions faced
by school-based speech-language pathologists. This
article will employ ethical principles, paradigms, and
precedents in the discussion of the Case of Hillary.
Approaches to Ethical Dilemmas
Recent literature has addressed ethical issues in
pediatric dysphagia. Lefton-Greif & Arvedson (1997)
thoughtfully describe the principles that should direct
our practice as clinicians. These principles are the
philosophical basis of the morals that guide our behavior
in the service of other persons (Beauchamp &
Childress, 1994). These principles instruct rules by
which we can abide. These rules are translated as
licensure and certification regulations and professional
codes of ethics (ASHA, 1994) that are effective in
leading professional practice. Some clinical ethical
challenges, however, require more in-depth understanding
of principles and precedent cases (Jonsen,
Siegler & Winslade, 1992) than can be addressed in a
School-Based Issues
code of ethics. For instance, when the principle of
autonomy (respecting the wishes of the patient/proxy)
conflicts with a professional’s sense of beneficence
(the ‘principle’ that one must always promote what is
good for a patient) an ethical conflict may arise. Since
parents are typically considered the default proxy
decision-maker for their children, in Hillary’s case the
principle of autonomy would guide us to respect the
wishes of the student’s mother (i.e., to feed Hillary by
mouth). John, however, feels that this decision is not
made with appropriate beneficence for Hillary. He is
afraid that, in fact, the decision may cause harm to
Hillary.
Case-based analysis is often most useful in determining
a range of acceptable outcomes in stressful
scenarios such as this and is promoted by Lefton-Greif
(2001) and Sharp & Genesen (1996). Sharp & Genesen
(1996) apply an ethical decision-making paradigm
described by Jonsen, Siegler and Winslade (1992) in
the book Clinical Ethics. The model weighs Medical (or
clinical) Indications (recommendations) against the
Patient/Proxy Preferences. Ideally ethical dilemmas
should be resolved through a communication process
between the patient/surrogate and the clinician/care
team. Sharp & Genesen indicate that occasionally other
factors, such as the evaluation of the patient’s Quality
of Life (if the patient is unable to communicate it
directly) and other Contextual Features (e.g., if the
parent wishes a student who cannot self-feed to maintain
nutrition and hydration by mouth) may need
attention in determining an acceptable and pragmatic
approach.
Hillary’s mother seems to be...

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