JCPSLP Vol 17 No 2 2015_web

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JCPSLP Volume 17, Number 2 2015 101
Importantly, SLPs can take further active steps to benefit
clients and reduce harm during palliative care. SLPs
can help families and nursing/care staff understand the
importance of good mouth care for a dying patient who is
not eating and drinking. SLPs may also facilitate families
and care staff to recognise non-verbal signs of pain and
discomfort and to communicate through comforting touch
and music (Alzheimer’s Organisation, 2012). Molly presents
a hopeful case study in a good death from advanced
dementia. Her family was fully informed and able to be
strong advocates throughout her life but particularly in the
end stages. The RCF was willing and able to provide quality
palliative care on site. The local GP was supportive and had
capacity to provide informed palliative care. The treating
SLP reflected that Molly had a good life and a good death.
Future directions
SLPs, similar to other members of the health care team,
may have limited knowledge of advanced dementia and
palliative care approaches. Consistent introduction of
palliative care topics in entry-level SLP education programs
in Australia may go some way to remediating this deficit.
Appropriate clinical supervision and support are also
required to define professional roles and facilitate skills in
this complex and sometimes emotionally challenging area
of practice.
Despite more than a decade of evidence around the
futility of feeding tubes in advanced dementia, findings from
a survey of American SLPs working in RCFs showed that
more than 56% of respondents perceived a PEG would
improve both nutrition and survival in people with advanced
dementia (Sharp, & Shega, 2009). Many organisations
employing SLPs lack organisational approaches such
as policies and/or procedures around the prescription
of feeding tubes or the use of palliative or comfort oral
feeding for clients who are very elderly or diagnosed with
advanced dementia. Absence of organisational policies
can result in ad hoc management of these patients and
ethical conflicts for team members. End-of-life management
decisions, made in response to medical crisis, can lead to
conflict between team members and/or the family/carers
with regard to the goals of care for a person with advanced
dementia. The timing of end-of-life discussions for RCF and
home-based patients is critical if suffering at the end of life
is to be diminished.
Oleg Chetnov, assistant director-general of the World
Health Organization suggests “Whilst we strengthen
efforts to reduce the burden of the biggest killers in the
world today, we must also alleviate the suffering of those
with progressive illness who do not respond to curative
treatment” (World Wide Palliative Care Alliance, 2014, p. 3).
Chetnov’s statement issues a challenge to SLPs around the
world who manage people with advanced dementia.
Conclusion
Advanced dementia and its management will demand
increased attention by SLPs across the continuum of care
as the incidence and burden of dementia increase. While
much has been written in the last decade about prognosis
and management at the end of life in advanced dementia,
many people and their families face systems poorly
equipped to provide quality end-of-life care. SLPs have
professional perspectives informed by specialist knowledge,
skills, and attitudes that may positively contribute to
families’ and carers’ understanding of the end-of-life signs.
SLPs may contribute toward decision-makers’
and drinking and asked the SLP what to expect at the next
stage of her illness. The SLP then described typical
changes in communication and swallowing and potential
medical events such as dehydration and pneumonia
associated with end-of-life dementia. The daughter, who
was also a health professional, expressed gratitude for the
SLP’s honesty and support. Twelve months later Molly was
totally bed bound, non-verbal and was eating and drinking
very little of her modified diet and fluids or the water and ice
she was offered. Her daughter received a call from the RCF
informing her that Molly appeared to have pneumonia. She
was asked if she wished Molly to be transferred to hospital.
The daughter expressed a preference for a palliative
approach in the RCF. The RCF was willing to provide this
service and called a local GP to ensure Molly’s comfort. The
daughter called her siblings and 48 hours later Molly
passed away peacefully in her home, with her children
present.
Ethical issues
Molly and Antonio both died with advanced dementia. Both
clients were supported by caring families and accessed
health care services. Yet the outcomes of the two cases
were markedly different. A key difference is the extent to
which the ethical principle of autonomy (SPA, 2010) was
upheld in both cases. In contrast to Antonio’s case, Molly’s
family was prepared and made decisions regarding her care
throughout the process of her dying. The SLP facilitated
Molly’s daughter’s autonomous decision-making thereby
focusing upon comfort and pain management. Hence, the
SLPs approach was also consistent with ethical obligations
to benefit Molly and her daughter by providing ongoing
care. What were the features of this positive outcome for
Molly?
The importance of the SLP relationship
In community and hospital environments, SLPs have an
opportunity to develop professional relationships with
people with dementia and their families and carers through
a long and ongoing association such as the relationship
between the SLP, Molly, and her daughter. With their skills
in communication, SLPs may support families, such as
Molly’s, in their role as substitute decision-makers.
Resources exist to support SLPs in this role (e.g., NSW
Health, 2005; SPA, 2014). Health professional support and
appropriate information for families and other substitute
decision-makers has been shown to improve end-of-life
care in advanced dementia. Support and information
empowers families and health care teams to make informed
choices and where appropriate use a palliative focus for
care (van der Steen et al., 2014).
Speech pathology active involvement
Quality end-of-life care requires active involvement from all
members of the interdisciplinary team, including SLPs.
Once a patient has a documented palliative treatment plan
(rather than an active curative treatment plan), SLPs may
legally and ethically prescribe food and fluids that may be
aspirated as the goal of treatment is now comfort and
pleasure versus longevity (SA Govt, 2013). However, the
SLP has ethical responsibilities to facilitate informed
decision-making based upon clear communication
regarding options, risks, and likely consequences of
dysphagia management. Here, the ethical principle of
autonomy is respected and the principles of beneficence
and non-maleficence are argued by addressing
psychosocial issues and prognosis.