58 / 80
56
JCPSLP
Volume 17, Supplement 1, 2015 – Ethical practice in speech pathology
Journal of Clinical Practice in Speech-Language Pathology
At the next meeting Anna and the family decide to take
Mrs Demarco home with supports (including visiting nurses
and home help) and to use comfort oral intake. Three
months later Mrs Demarco passes away at home in her
sleep after many meals of her favourite home-made gelato.
Ethical questions raised
Box 1 lists a number of ethical questions raised in this case
study. Refer to the Speech Pathology Australia Code of
Ethics (Speech Pathology Australia, 2010) for more
information.
education about appropriate consistencies Anna brought in
appropriate home-made foods for her mother to eat.
Anna had asked the speech pathologist about the PEG
feeding tube. The speech pathologist had explained in
detail what it was and provided an information booklet.
The booklet contained a worksheet for patients/families
considering a PEG feeding tube procedure that included
the advantages and disadvantages of feeding tubes. The
speech pathologist was not sure Anna fully understood the
information in the booklet. She revisited the information with
an interpreter present. Anna still had many questions and
the speech pathologist wondered about Anna’s exposure
to and understanding of health information matters. After a
series of meetings and discussions, she thought that Anna
demonstrated a basic understanding of the procedure and
its complications.
3. Establishing who can give consent
The social worker has established that Mrs Demarco’s
daughter has legal guardianship but that Mrs Demarco has
not made any advanced directives or statement of choices
regarding medical treatment or insertion of a feeding tube.
Mrs Demarco has two other children. The physiotherapist
has established that Mrs Demarco is now bed-bound and
cannot stand or transfer safely. Mrs Demarco’s three
children need to understand Mrs Demarco’s capabilities
and difficulties before making any informed decisions about
their mother’s future care.
4. The importance of team work
Anna’s English, while functional, appears limited for
complex health-related information. Accordingly the social
worker arranges for an interpreter to be present at the
family meeting. Anna and her two brothers attend the family
meeting. Mrs Demarco is not in attendance as she is
unable to participate in the discussion and decision-making
due to her decreased cognitive abilities.
At the family meeting the general medical team provides
the family with information regarding Mrs Demarco’s
diagnoses and prognosis. The signs of end-stage dementia
are stressed. The family agree they have seen a marked
deterioration in Mrs Demarco over the past six months
in general and this admission in particular. The speech
pathologist explains the difficulties that Mrs Demarco has
with eating and drinking and the associated problems with
choking and aspirating.
Anna asks again about the option of the PEG feeding
tube as she does not want her mother to starve. The
palliative care team explain how at the end of life people
often stop feeling hunger and thirst. The team describe the
role that comfort-feeding of foods that will not obstruct her
airway, (that is, the choice of relatively low risk non-choke
foods) and exemplary mouth care could play in maintaining
Mrs Demarco’s quality of life and comfort.
5. The importance of time
The palliative care team sensitively explains to Anna why
her mother’s situation is different to that of her friend’s
mother. Anna begins to gently weep. The general medical
and palliative care teams offer to give Anna and her
brothers more time to discuss all the information and agree
to revisit the issue in a couple of days. Over the ensuing
days Anna asks many questions of all members of the team
about PEG feeding tubes and comfort-feeding and
end-stage palliative care. The palliative care social worker
talks with the family about what supports could be provided
at home or in a hospice or nursing home.
Box 1. Ethical questions to ask when considering
placement of a feeding tube in a client with life-
limiting disease
• Does the multidisciplinary team agree on the client’s diagnosis
and prognosis?
• Does the client understand her/his diagnosis and prognosis?
• Can the client make informed decisions about her/his medical
care or is surrogate decision-making necessary?
• Has clear and accurate information (couched in terms that suit
the family’s level of health literacy) been provided to the family to
enable them to make informed decisions (autonomy) and provide
informed consent?
• Has the family had the opportunity to express their opinion and
participate in the decision-making process?
• When considering active treatment has “non-maleficience” been
considered (i.e., harm prevention and not intentionally causing
harm)?
• Have the client’s comfort and quality of life been considered (i.e.,
“beneficence” / benefiting others through our actions?)
• Is it possible to enhance the client’s level of function or is active
intervention “futile”?
• What level of clinical expertise is required? If necessary, have
senior speech pathologists been consulted?
Implications for speech
pathologists
This case study attempts to illustrate the importance of
accurate, meaningful dysphagia assessment, the
complexity of truly informed consent, the importance of the
consideration of futility of intervention or treatment and
doing no harm, balanced with quality-of-life decisions and
doing “good” in end of life dysphagia management.
These ethical considerations, however, illustrate that
there are no easy answers to complex situations. Some
clients presenting to hospital with life-limiting disease
and dysphagia may not be provided with all options.
These clients may receive PEG feeding tubes, may be
sedated so they do not pull them out, and may receive
the recommendation of “nil orally” to manage the risk of
aspiration and pneumonia. Families may not be provided
with essential information about the end-of-life process or
may not be in a position to hear this information (because
they may find it difficult to accept that their loved one is
in the process of dying). The speech pathologist has an
important role in facilitating complex conversations and
communication of detailed and sometimes distressing
information to the patient and the family.
While this type of situation is part of the daily life of many
speech pathologists, students and clinicians inexperienced