JCPSLP Vol 17 Supplement 1 2015_lores

Ethics and dysphagia management

Dysphagia assessment and management at the end of life Some ethical considerations Helen Smith, Noel Muller, and Trish Bradd

A ssessing and managing people with dysphagia at the end of their life is an integral part of most adult speech pathologists’ everyday practice in hospitals, nursing homes, and domiciliary care settings throughout Australia. Good palliative care is no longer viewed as important only for people with cancer. Long-term, life- limiting conditions such as increasing frailty, vital organ failure, dementia, and degenerative neurological conditions (e.g., amyotrophic lateral sclerosis, multiple sclerosis, or Parkinson’s disease) account for 47% of deaths (Kellehear, 2009; Mahtani-Chungani, Gonzalez-Castro, Saenz de Ormijana-Hernandez, Martin-Fernandez, & Fernandez de la Vega, 2010). Where people have long-term, life-limiting conditions and are receiving care, speech pathologists have a clear role in supporting those clients (who develop dysphagia as part of their symptoms) and their carers through the cycles of wellness and decline in chronic palliative care as well as in the final phases of a terminal illness. Managing the implications of dysphagia for people in the final phases of a terminal illness or for people suffering from an advanced life-limiting illness that impairs their quality of life raises a number of professional and ethical issues. This article uses a case study to discuss the importance of accurate diagnosis and prognosis to ensure that ethical decision- making processes are used in making informed decisions about care planning. It will briefly discuss available management options and will consider comfort, quality of life, harm reduction, and treatment futility inherent in some of these options. The critical roles that health literacy and teamwork play in ethical decision-making will also be considered. The client: presentation and history Mrs Demarco 1 is an 89-year-old woman of Italian descent who lives at home with her daughter Anna. She presents to hospital following a fall when going to the toilet. She presents with delirium, dehydration, and a urinary tract infection (UTI). She also suffers from mild heart failure and reflux. This is her third admission to hospital in 6 months. She has lost 10 kg since her last admission and is now essentially bed-bound with cachexia 2 . During Mrs Demarco’s first admission the medical team diagnosed her with dementia and an ulcerated leg. During her second admission she was diagnosed with aspiration

pneumonia, and the speech pathologist prescribed a modified food and fluids diet in response to her moderate difficulties in swallowing (dysphagia) and the fact that she had developed aspiration pneumonia. The client: diagnosis and prognosis Despite reduced alertness, poor communication in English and Italian, and difficulty managing oral secretions, the general medical team think that with intravenous fluids and antibiotics for the UTI, Mrs Demarco’s general state of alertness may improve. The general medical team in consultation with Mrs Demarco’s daughter have decided to treat Mrs Demarco actively, that is, by using therapeutic agents such as antibiotics to improve her general condition and to reduce some of her symptoms. As Mrs Demarco’s status is for active medical treatment, the speech pathologist recommends that Mrs Demarco not eat or drink food and fluids (either modified or unmodified) at this point in time and that instructions for “nil by mouth” be noted in the file and by her bedside. Mrs Demarco’s daughter, Anna, is very concerned about her mother’s restrictions in oral intake and her mother’s inability to take her heart medications orally. Anna insists the doctors insert a nasogastric feeding tube (NGT) so that her mother will be able to receive nutrition via the tube. The medical team agree to insert the NGT as a therapeutic trial (to be reviewed after seven to ten days). After the first seven days, Mrs Demarco’s conscious state improves, but as she becomes more alert, her tolerance for the NGT decreases. Mrs Demarco pulls the tube out five times in the next three days. The NGT is removed as it is causing Mrs Demarco great distress. Mrs Demarco also repeatedly pulls out the intra venous (IV) cannula (drip) that provides her with hydration. On day ten Mrs Demarco is awake but unable to communicate effectively in either Italian or English. She is not able to get out of bed without assistance and cannot sit, stand, or walk, even with physiotherapy assistance. Mrs Demarco remains severely dysphagic and can tolerate only minimal amounts of extremely thickened fluids and pureed solids. Her ability to cooperate in taking modified food and fluids orally is variable and inconsistent. For the next few days Mrs Demarco intermittently appears to aspirate small amounts of food and fluid, particularly when tired. However, she has a strong cough and aspiration of small amounts of food and fluid do not appear to make her breathing uncomfortable.

Helen Smith (top), Noel Muller

(centre), and Trish Bradd

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JCPSLP Volume 17, Supplement 1, 2015 – Ethical practice in speech pathology

Journal of Clinical Practice in Speech-Language Pathology