JCPSLP Vol 17 No 2 2015_web

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 1 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

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

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JCPSLP Volume 17, Number 2 2015

Journal of Clinical Practice in Speech-Language Pathology