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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.

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JCPSLP Volume 17, Number 2 2015

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