JCPSLP Vol 17 No 2 2015_web

Ethical conversations

A speech-language perspective on “doing good” in end-of-life care for people with advanced dementia Helen Smith and Belinda Kenny

Speech-language pathologists working with adults across the continuum of care from acute sub-acute hospitals to in home community services and nursing homes frequently encounter people diagnosed with dementia. Patients with dementia and their families often face challenging decisions about current and future management plans and goals of care. Speech pathologists must also address ethical challenges in providing care for such patients. This article discusses how speech-language pathologists may contribute to “doing good” to enable quality end-of-life care for people with advanced dementia through their communication and dysphagia expertise. Case studies illustrate the potential role of speech language pathologists in improving the quality of end-of-life care for people with advanced dementia. T oday, there are over 332,000 people diagnosed with dementia in Australia and 44 million people worldwide (Alzheimer’s Australia, 2014). Indeed, a conservative estimate is that approximately 30% of Australians over the age of 85 have dementia (AIHW, 2012) and it is contended that Aboriginal and Torres Strait Islander people have higher rates of dementia and younger onset than other population groups in Australia (e.g., Li et al., 2014). Pneumonia, febrile illness, and dysphagia are frequently occurring challenges for people with advanced dementia in the last 6 months of life (Mitchell et al., 2009). Hence, speech-language pathologists (SLPs) have an important role in the assessment, treatment, and end-of-life management for people with advanced dementia. People with dementia and their families often face challenging decisions about current and future management plans across a range of functional areas. Currently, dementia is the third leading cause of death in Australia (Alzheimer’s Australia, 2014; Australian Bureau of Statistics [ABS], 2012). However, failure to recognise dementia as an incurable and progressive disease often results in inadequate end-of-life care (Coleman, 2012; Connor, Tecca, Lund-Person, & Teno, 2004; Torke, 2014;

Wolf-Klein, Pekmezaris, Chin, & Weiner, 2007). Importantly, many adults in the community express a preference for dying at home (Dekkers, Sandman, & Webb, 2002). Yet, a recent UK study found that 80% of adults with advanced dementia living in community dwellings and 30% of those living in residential care facilities did not die in their homes (Perrels et al., 2014). These findings highlight the need for greater awareness of issues associated with end-of-life care for adults with dementia. End-of-life care is frequently managed by generalist health professionals and is not limited to palliative care “experts” (National Health and Hospitals Reform Commission, 2009). As frontline health professionals, SLPs may be involved in helping patients and their carers understand the predicted course of their dementia, particularly in the end stages. SLPs may experience ethical challenges when managing patients with dementia during end-of-life care. Here, we present two clinical scenarios drawn from the first author’s professional experience and discuss the ethical issues at stake. The first case is an amalgamation of several cases from clinical practice. The second is used with permission from the patient’s daughter. Pseudonyms are used to protect the identity of patients and their families. Case 1: Antonio – Everything must be done to make dad better Antonio was an 86-year-old Italian man with advanced dementia who presented to hospital with aspiration pneumonia, urinary tract infection, and delirium during his fourth admission for the year. Prior to admission, he was cared for at home by his daughter-in-law and son with assistance from his two daughters who lived in the same neighbourhood. Antonio had been unable to mobilise independently and had been dependent on his family for all activities of daily living (ADL) for several months, non-verbal for 6 months, and diagnosed with dysphagia for 12 months. SLP reassessment of his dysphagia indicated a severe swallowing impairment that deteriorated to profound dysphagia over the course of his admission. Antonio’s family requested full active measures with the goal for him to return home. Accordingly, Antonio was placed nil by mouth, treated with intravenous antibiotics, and three nasogastric feeding tubes were inserted (and pulled out by Antonio) in the first 10 days of admission. The treating medical team then ordered a percutaneous endoscopic gastrostomy tube (PEG) in response to the

KEYWORDS ADVANCED DEMENTIA ETHICS PALLIATIVE CARE

Helen Smith (top) and Belinda Kenny

98

JCPSLP Volume 17, Number 2 2015

Journal of Clinical Practice in Speech-Language Pathology