Ethical Issues of Artificial Hydration and Nutrition Gail Wilson

Dementia and Nutrition Difficulty eating is a marker of advanced dementia and the appearance of dysphagia is a sign of further disease progression (Gillick 2000) Hospital admission because of dysphagia is unlikely to be of benefit to the person with advanced dementia. High risk of malnutrition, due to advancing disease-non reversible.

‘Food First’ nutrition support Encourage higher calorie foods and drinks Food fortification person’s food preferences preference for sweet foods available throughout the day and night , when they are most alert. 6 or so small meals and snacks rather than 3

Hand out.

What are EOL Hydration and Food Needs ? In the dying phase, a patient’s desire for food and drink lessens. Good mouth care rather than attempting to feed a patient becomes the more appropriate intervention (GMC 2010) Where nutrition is withheld, death will follow. The duration between withholding nutrition and death can be as long as 10 weeks, but where hydration is also withdrawn may be as short as three days and usually no longer than 14 ( in a healthy adult, shorter in other cases)

Myths It is commonly believed that death from absent nutrition or hydration is distressing or painful for the patient. For those who are severely cognitively impaired, there is little evidence that hunger or thirst are perceived significantly. Indeed, such patients may resist the efforts by carers to offer food or fluids. The dilemma of whether to ‘force feed’ such patients by mouth or artificially then arises Ethical dilemma ‘Beneficence’ to comfort, to preserve life and ‘non maleficence, the responsibility to avoid harm’

Study Mortality Rates PEG Feeding Dementia Patients Several studies have suggested that where dementia is the reason for PEG placement, it does not extend life and is associated with a greater mortality Chernoff R. Tube feeding patients with dementia. Nutr Clin Pract 2006;21:142–6.

Advance Care Planning/ ADRT Patients should be encouraged to discuss their preferences about care in situations that are likely to occur. Most patients welcome such discussions

EOL Needs There is growing evidence that people at the end of life don’t suffer from more than transient hunger and thirst, and they can experience comfort from minimal intake of food and fluid (Gillick 2000). Experience in palliative care settings suggests that most imminently dying patients die comfortably without artificial hydration (Partridge & Campbell 2007). A nil by mouth instruction should NOT be given. It may cause considerable distress to relatives and carers and there is no evidence of harm from continuing to offer small amounts of fluids and food in the terminal stages provided the patient is correctly positioned and sufficiently alert (Palliative Care in Dementia Group 2009) Good Mouthcare ,is the most important comfort measure you can give a patient at this time (GMC 2010)

Case Studies Mr Giles – Patient with Advanced Dementia Dr Marks - GP Mrs Wilks – Daughter of Mr Giles Miss out

ANH ? it’s important to consider What are you expecting to achieve? Are these expectations realistic? Has adequate information been shared with relatives and carers to ensure that they do not have unrealistic expectations of what tube feeding can achieve? What would the person with advanced dementia have wanted? Is tube feeding really in the person with advanced dementia best interests? What are the risks ? Will the benefits of human contact and stimulation from food (during all meals, snacks and drinks) be lost? Miss out

References GMC (2010) Oral feeding difficulties and dilemmas :A guide to practical care, particularly towards the end of life. Palliative Care in Dementia Group (2009) Compromised Swallowing : A Practical Guide to Nutrition, Hydration and Medication in Advanced Dementia. Gillick (2000) Rethinking the role of tube feeding in patients with advanced dementia New England Journal of Medicine 2000 Vol 342 No 3 Partridge & Campbell (2007) Artificial Nutrition and Hydration Guidance in End of Life Care for Adults National Council for Palliative Care May 2007