JCPSLP Vol 17 No 2 2015_web

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JCPSLP Volume 17, Number 2 2015 99
Antonio’s loving family, and some health care professionals
(particularly inexperienced staff members), are unable to tell
when death is approaching (Dugdale, 2010). This lack of
awareness of the terminal nature of advanced dementia is
not limited to people living in the community. Often people
in residential care facilities with advanced dementia are not
perceived as having a terminal condition, despite the fact
that approximately 70% die within 6 months of nursing
home admission (Mitchell, Kiely, & Hamel, 2004).
The challenge for experienced SLPs is to assist lay
people and inexperienced health professionals to recognise
the signs of end of life in advanced dementia and assist
people to prepare for the patient’s dying and death, thus
facilitating “doing good” in end-of-life care. Antonio’s family
may have perceived benefits and harms of the treatments
offered quite differently if they had understood that he was
dying.
According to Mitchell et al. (2009), all health
professionals, when trying to prognosticate about death,
would benefit from asking the simple question “Would you
be surprised if Mr X died in the next 6 months?” Certainly,
the SLP in this scenario reflected upon this question and
answered a resounding “no.” Antonio’s age, in conjunction
with his frail physical state, history of frequent hospital
admissions, and diagnosis of advanced dementia made
death a likely outcome in the next 6 months.
Communicating prognosis in advanced
dementia
The clinical course of dementia is often described as
“prolonged dwindling”, with a long slow increase in frailty
and decrease in functioning with high levels of disability in
the last year of life (Gill, Gahbaur, Han, & Allore, 2010). The
Speech Pathology Australia, Professional Competence,
Standard of Practice (SPA, 2010) emphasises the need for
SLPs to extend their professional knowledge to ensure
competent practice. Knowledge of disease progression is
essential for SLPs working with people with dementia. As
presented in Table 1, there are well-described signs,
particularly relevant to SLPs, which suggest the end stage
of advanced dementia is approaching.
From an advanced dementia mortality perspective,
Antonio’s clinical prognosis was poor with limited mortality
predicted even before the insertion and traumatic partial
family’s request. The family expressed concerns not only
about extending Antonio’s life but also that he might be
hungry.
Prior to the PEG placement, the treating SLP highlighted
to the treating medical team the advanced nature of his
disease and the risks associated with the PEG placement.
The SLP raised the importance of discussing all options
with the family, including palliation, which might include
palliative oral intake for comfort/pleasure. The SLP also
explained that it was typical for appetite to diminish at
end of life. However, the medical team, inexperienced in
palliative care, stated patients could live for “years” with
dementia and the family wanted the PEG.
Antonio partially pulled out his PEG three days after
it was inserted. His response to the PEG resulted in
unintended negative consequences; chemical restraint,
an infection in the PEG site, pain, and sepsis. Antonio had
reportedly always loved food but his “active” treatment plan
determined he was now unable to eat or drink. Antonio
died 8 days later in hospital. His family expressed shock,
distress, and anger at his death. This scenario will be
recognised by many SLPs who work in the acute care
setting. The nature and timing of Antonio’s death was
unexpected and unacceptable to his family.
Ethical dilemma
Antonio’s case presents an ethical dilemma. The Speech
Pathology Australia (SPA) Code of Ethics includes non-
maleficence or “do no harm” as a fundamental principle
(SPA, 2010). This means futile and burdensome treatment,
such as aggressive antibiotic treatments (Givens, Jones,
Shaffer, Kiely, & Mitchell, 2010) and PEGs, should be
avoided in advanced dementia (Finucare & Bynum, 1996;
Finucane, Christmas, & Travis, 1999; Mitchell, Kiely, &
Lipsitz, 1997; van der Steen et al., 2014). Nonetheless, the
SPA Code of Ethics (2010) states that SLPs must also seek
to benefit others through our management. We argue that
there are several factors that could have been addressed in
Antonio’s scenario to provide quality care, consistent with
the ethical principle of beneficence.
Knowledge of advanced dementia
One issue concerns health professionals’ knowledge of the
process of death and dying. Medical technology has
developed to such an extent that lay people, in this case
Table 1. Mortality risk factors in advanced dementia
Life Expectancy Signs
Days (i.e., death within 17–54 hours) Extreme difficulty swallowing and a “death rattle” (Wilders & Menton, 2002; Wee & Hillier, 2008)
3 months or less Pain, restlessness, shortness of breath, difficulty swallowing, pneumonia and pressure ulcers (van der
Steen, 2010; Givens, Jones, Shaffer, Keily, & Mitchell, 2010)
Hypoactive delirium (Kapo, 2011)
6 months or less People with advanced dementia aged over 83, cardiovascular disease, diabetes mellitus, greater
functional impairment, poor nutritional status, dyspnoea requiring oxygen, and not being awake most of
the day (Mitchell et al., 2009)
FAST stage 7c: Non-ambulatory, non-verbal with total dependence in all ADL (Mitchell et al., 2004b)
The Advanced Dementia Prognostic Tool (ADEPT): Insufficient oral (Mitchell et al., 2010)
12 months or less Language limited to several words (Gill, Gahbauer, Han, & Allore, 2010)
Dependent in all ADL (Gill, Gahbauer, Han, & Allore, 2010)
50% admitted to hospital with hip fractures or pneumonia (Kapo, 2011)
Pneumonia, febrile episodes and eating problems (Mitchell et al., 2009)
FAST stage 7: Language limited to several words and dependent in all ADL (Mitchell et al., 2004b)