Denise Ambrosi, MS CCC-SLP
Clinical Supervisor, Speech Pathology Department
Spaulding Rehabilitation Hospital
Boston
Mrs. J's case raises important questions regarding
the role of the speech-language pathologist in the
management of dysphagia in the terminally ill patient.
First, would the speech-language pathologist approach
this patient like any other patient? Certainly Mrs. J is
entitled to a clinical swallowing assessment and a
modified barium swallow study (which would likely be
indicated based on diagnosis). Despite Mrs. J's wish
to avoid use of feeding tubes to prolong her life, the
speech-language pathologist could play an important role
in her care. A videofluoroscopic study would serve to
identify: the nature of her dysphagia, presence of
aspiration and its cause, her ability to protect her
airway (ie. cough response and its effectiveness),
"safest" diet textures, and any compensatory
and therapeutic maneuvers that may provide her with the
most efficient swallow possible. After this information
is gathered, patient/family education would be the most
critical intervention that the speech-language
pathologist could offer. Once educated regarding her
current swallowing skills and the risks that accompany
oral feeding, Mrs. J could make informed decisions after
weighing all of her options. This is based on the
assumption that she has decision-making capacity
(DMC).
Second, does Mrs. J fully understand her dysphagia
status, and is she willing to take the risks which have
been identified (critical components of DMC)? It is not
for the clinician to decide if she/he would take the
risks faced by Mrs. J. Respect for Mrs. J's decisions
is an ethical responsibility for the speech-language
pathologist once she/he is confident that Mrs. J
understands her situation. If the speech-language
pathologist feels morally unable to work with this
patient, then it is her/his responsibility to identify
another speech-language pathologist who can work with
her.
Third, what is the nature of the dysphagia
"treatment" with Mrs. Johnson? It may be felt
by some that being labeled "terminally ill"
precludes receiving traditional rehabilitation treatment.
The speech-language pathologist needs to consider that
the goal of treatment may be short-term, and a change in
the physiology of her swallowing may not be the
anticipated outcome. Rather, therapy would encompass
patient/family education and implementation of
compensations for dysphagia with the "safest"
diet. This approach may serve to minimize the physical
and emotional pain and discomfort associated with
dysphagia and aspiration.
Most speech-language pathologists have no formal
training in the area of palliative care, and yet are
expected to counsel terminally ill patients with regard
to dysphagia and end of life decisions about eating. Each
of us needs to examine our level of comfort and
competence in treating the terminally ill patient. The
treatment may be time limited yet critical to the dying
patient. In a recent lecture, Rabbi Harold Kushner,
expert in death and dying, stated "there are two
things that terminally ill people fear more than the
prospect of death - pain and abandonment."
Swallowing treatment may palliate the symptoms of
dysphagia, and through this intervention the
speech-language pathologist may create a supportive
presence to alleviate feelings of abandonment during the
dying process.
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