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JCPSLP
Volume 17, Number 2 2015
Journal of Clinical Practice in Speech-Language Pathology
and death (Hennings, Froggatt, & Keady, 2010). To address
this issue, some tertiary health professional preparation
programs in Australia have integrated palliative care
teaching as part of their curriculum (PCC4U, 2013). Guides
for formally approaching end of life conversations have
also been developed for health professionals (Stirling et
al., 2011; University of Queensland et al., 2012). However,
practice, supervision, and mentoring is required for SLPs’ to
develop competency in this fundamental area of practice.
In the case of Antonio, if the health care team were more
comfortable talking of death then the course of his dying
may have involved less client and family suffering.
Antonio’s scenario also raised issues regarding SLPs’
role as client advocates in palliative care. Professional
responsibilities include helping to educate family members
to empower their decision-making. Perhaps the SLP
in Antonio’s scenario may have adopted a different or
stronger approach to presenting evidence and questioning
his management plan. By developing knowledge of
Advanced Care Directives (SA Government, 2013) and
the concepts of capacity and substitute decision-making,
SLPs are more likely to be able to contribute effectively to
the multidisciplinary team in supporting families and carers
of people with dementia to make informed decisions. The
importance of ethical and legal obligations surrounding
doctors’ rights to withhold futile medical treatment is
frequently reinforced by experienced SLPs (Willmott, White,
& Downie, 2013).
Cultural considerations
Issues of end-of-life nutrition and hydration are also infused
with cultural conundrums. Many cultures see the provision
of food and fluids as a fundamental act of care. For
example, findings from a study in Singapore recommended
increased use of nasogastric tube feeding at the end of life
due to social, religious, and cultural factors to expressly
prolong life of terminally ill people (Krishna, 2011). Cultural
considerations may influence a family’s desire for active
treatment. The ethical principle of autonomy guides SLPs to
respect clients’ choices and may have been upheld in this
scenario if Antonio’s family expressed their preferences
despite education regarding the options and potential
outcomes affecting their father’s care.
Case 1: Summary
Antonio’s case illustrated how ethical practice underpins
quality of care in advanced dementia. Benefits and harms
must be clearly communicated to families with
consideration given to the client’s prognosis. Speech
pathologists can make an important contribution to the care
of people with advanced dementia. To this end, developing
the skills to engage families in conversations about
end-of-life care is essential for effective care. Antonio’s case
did not result in positive care outcomes for Antonio, his
family, or the health care team. By contrast the following
scenario, Molly’s case, demonstrates how the outcome of a
“good death” may be achieved for people with advanced
dementia.
Case 2: Molly – A good death
Molly was an 85-year-old woman with advanced dementia
living in a residential aged-care facility (RCF). Molly had
been treated by a SLP some years earlier for tongue
cancer. Her family continued to consult the SLP as Molly’s
communication and swallowing needs increased with her
advancing dementia. Molly’s daughter observed that Molly
was becoming increasingly frail and less interested in eating
removal of the PEG tube and subsequent sepsis. From an
ethics perspective, Antonio’s family did not have access to
accurate prognostic information that may have guided their
decision-making during Antonio’s death.
SLPs’ contributions to high-quality
palliative care
Palliative care can be an appropriate treatment approach
for people such as Antonio. National Palliative Care week in
2014 had a theme of “Palliative Care Everyone’s Business:
Let’s work together”. This theme was consistent with a
need for more knowledge and dialogue around palliative
care among health professions and the community.
Palliative care can be provided by primary care generalists
with support from specialists (Commonwealth of Australia,
2009). A palliative approach to care is not restricted to the
last weeks or days of life (Stirling et al., 2011; University of
Queensland, 2012;). A SLP may therefore contribute to
quality end-of-life care for people with dementia through
both their communication and dysphagia expertise,
particularly during the last years of life. SLPs may also be
“present” with relatives and carers through the dementia
journey, helping them to understand the subtle changes in
function and symptoms as the dementia progresses. This
professional role may contribute to better end-of-life care
because distressing symptoms and burdensome
interventions are less likely to occur when people with
advanced dementia have health care proxies who
understand the prognosis and clinical course of dementia
(Mitchell et al., 2009). SLPs’ knowledge that the end of life
is associated with decreased hunger and thirst may help
reassure families, such as Antonio’s, that they are not
“starving” him if his intake is inadequate, reduced, or limited.
Furthermore, SLPs’ knowledge of the evidence around
the limited benefits of artificial nutrition and hydration in
long-term care settings (Australian and New Zealand
Society for Geriatric Medicine, 2010; Daniel, Rhodes,
Vitale & Shega, 2013; Kuo, Rhodes, Mitchell, Mor, & Teno,
2009; Monteleoni & Clark, 2004; Sharp & Shega, 2009)
can contribute to carer and staff education. In the last
days or weeks of life, SLPs may be advocates for comfort
“palliative” oral intake and the positive patient benefits
of decreased food and fluid intake. An Ethic of Care
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approach would suggest including comfort feeding as
ethically appropriate end-of-life care in advanced dementia
such as Antonio’s (Lopez, Amella, Strumpf, Teno, &
Mitchell, 2010).
Communication in palliative care
SLPs are trained to interpret non-verbal behaviour and may
identify vocalisations, grimacing, bracing, verbal complaints,
and restlessness associated with pain for the team. SLPs’
may also contribute to strategies, verbal and non-verbal, to
diffuse anxiety and distress in adults with dementia and
delirium (Alzheimer’s Australia (WA), 2010). For a person
who is non-verbal, such as Antonio, improved
communication may have assisted in meeting comfort
needs during his last days. SLPs’ and other health
professionals involved in the care of people with dementia
and the counselling of their families have an ethical
imperative to develop competence in discussing dying and
death (Gamino & Ritter, 2012). Developing such
competency may avoid a clinician’s personal values, beliefs,
or death anxiety interfering with their ability to be “present”
with their clients.
Many health care workers in hospitals and residential
care facilities may have limited skills in talking about dying