JCPSLP Vol 17 No 2 2015_web

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

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

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) 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)

6 months or less

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)

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JCPSLP Volume 17, Number 2 2015

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