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JCPSLP
Volume 17, Supplement 1, 2015 – Ethical practice in speech pathology
Journal of Clinical Practice in Speech-Language Pathology
Ethics and dysphagia management
Helen Smith
(top), Noel Muller
(centre), and
Trish Bradd
pneumonia, and the speech pathologist prescribed a
modified food and fluids diet in response to her moderate
difficulties in swallowing (dysphagia) and the fact that she
had developed aspiration pneumonia.
The client: diagnosis and prognosis
Despite reduced alertness, poor communication in English
and Italian, and difficulty managing oral secretions, the
general medical team think that with intravenous fluids and
antibiotics for the UTI, Mrs Demarco’s general state of
alertness may improve. The general medical team in
consultation with Mrs Demarco’s daughter have decided to
treat Mrs Demarco actively, that is, by using therapeutic
agents such as antibiotics to improve her general condition
and to reduce some of her symptoms. As Mrs Demarco’s
status is for active medical treatment, the speech
pathologist recommends that Mrs Demarco not eat or
drink food and fluids (either modified or unmodified) at this
point in time and that instructions for “nil by mouth” be
noted in the file and by her bedside.
Mrs Demarco’s daughter, Anna, is very concerned about
her mother’s restrictions in oral intake and her mother’s
inability to take her heart medications orally. Anna insists
the doctors insert a nasogastric feeding tube (NGT) so that
her mother will be able to receive nutrition via the tube.
The medical team agree to insert the NGT as a therapeutic
trial (to be reviewed after seven to ten days). After the first
seven days, Mrs Demarco’s conscious state improves,
but as she becomes more alert, her tolerance for the NGT
decreases. Mrs Demarco pulls the tube out five times in the
next three days. The NGT is removed as it is causing Mrs
Demarco great distress. Mrs Demarco also repeatedly pulls
out the intra venous (IV) cannula (drip) that provides her with
hydration.
On day ten Mrs Demarco is awake but unable to
communicate effectively in either Italian or English. She is
not able to get out of bed without assistance and cannot
sit, stand, or walk, even with physiotherapy assistance. Mrs
Demarco remains severely dysphagic and can tolerate only
minimal amounts of extremely thickened fluids and pureed
solids. Her ability to cooperate in taking modified food and
fluids orally is variable and inconsistent. For the next few
days Mrs Demarco intermittently appears to aspirate small
amounts of food and fluid, particularly when tired. However,
she has a strong cough and aspiration of small amounts
of food and fluid do not appear to make her breathing
uncomfortable.
A
ssessing and managing people with dysphagia at
the end of their life is an integral part of most adult
speech pathologists’ everyday practice in hospitals,
nursing homes, and domiciliary care settings throughout
Australia. Good palliative care is no longer viewed as
important only for people with cancer. Long-term, life-
limiting conditions such as increasing frailty, vital organ
failure, dementia, and degenerative neurological conditions
(e.g., amyotrophic lateral sclerosis, multiple sclerosis, or
Parkinson’s disease) account for 47% of deaths (Kellehear,
2009; Mahtani-Chungani, Gonzalez-Castro, Saenz de
Ormijana-Hernandez, Martin-Fernandez, & Fernandez de
la Vega, 2010). Where people have long-term, life-limiting
conditions and are receiving care, speech pathologists
have a clear role in supporting those clients (who develop
dysphagia as part of their symptoms) and their carers
through the cycles of wellness and decline in chronic
palliative care as well as in the final phases of a terminal
illness.
Managing the implications of dysphagia for people in the
final phases of a terminal illness or for people suffering from
an advanced life-limiting illness that impairs their quality
of life raises a number of professional and ethical issues.
This article uses a case study to discuss the importance
of accurate diagnosis and prognosis to ensure that ethical
decision- making processes are used in making informed
decisions about care planning. It will briefly discuss
available management options and will consider comfort,
quality of life, harm reduction, and treatment futility inherent
in some of these options. The critical roles that health
literacy and teamwork play in ethical decision-making will
also be considered.
The client: presentation
and history
Mrs Demarco
1
is an 89-year-old woman of Italian descent
who lives at home with her daughter Anna. She presents to
hospital following a fall when going to the toilet. She
presents with delirium, dehydration, and a urinary tract
infection (UTI). She also suffers from mild heart failure and
reflux. This is her third admission to hospital in 6 months.
She has lost 10 kg since her last admission and is now
essentially bed-bound with cachexia
2
.
During Mrs Demarco’s first admission the medical team
diagnosed her with dementia and an ulcerated leg. During
her second admission she was diagnosed with aspiration
Dysphagia assessment
and management at the
end of life
Some ethical considerations
Helen Smith, Noel Muller, and Trish Bradd