by H.R.W. Pasman, B.A.M. The, B.D. Onwuteaka-Philipsen, G. van der Wal & M.W. Ribbe (2003) Journal of Advanced Nursing 42, pp. 304–311
There is simply not enough research into the feeding of patients with dementia and the paper by Pasman and colleagues is both welcome and valuable. The paper confirms much of what we already know in this area and also confirms much of what I suspected, but which has never been investigated before.
The point that problems with feeding arise long before any decisions about artificial feeding are recognized is very important. It also means that such problems arise before any formal decisions are made about sustaining or withdrawing treatment. However, reading guidelines from learned and professional bodies [British Association for Parenteral and Enteral Nutrition (BAPEN) 1999, British Medical Association (BMA) 1999] would lead one to suppose that the only important ethical decisions were taken at this late stage. On the contrary, in the face of early feeding difficulties in dementia, those caring for people with dementia face an ethical decision each time a patient with dementia is approached at mealtime. If food is not provided then the patient will eventually die; if food is provided and eaten then suffering may be prolonged. Really, this is the first study to examine the factors which may influence decision-making in this area.
The results demonstrate that it is the nurses' perception of why the person with dementia is refusing food which dictates what they think is the appropriate course of action. The authors correctly indicate that scales such as the EdFED scale, which measure aversive behaviour, do not indicate why the person with dementia is refusing food (Watson 1996). This is one of the fundamental problems in the care of people with advanced dementia: we do not fully understand their motives and therefore do not know how to respond.
The study by Pasman and colleagues also demonstrates the emotional involvement of nurses in feeding people with dementia: they report satisfaction when it is achieved and guilt when it is not. In order to avert guilt and achieve satisfaction then ‘tricks’ are used to feed the person with dementia. This surely warrants further investigation, especially in the light of a later indication that the nurses did not see what they did as ‘force feeding’. The line between ‘assisting to eat’ and ‘force feeding’ is one which nurses need to be clear about. We have no right make a person with dementia eat when it is clear that they do not want to. However, where does force-feeding begin and assistance end? Does the mere presentation of food to someone who has clearly indicated an intention not to eat – whether we understand the motive or not – constitute abuse?
It is hardly surprising, given what we do not know about people with dementia and their responses to food that different cultures were observed on different units. Different cultures arise where no clear guidance or knowledge exists. It will be a long time before we know how to help people with dementia to eat and when to cease helping. However, we will never know if we do not study this problem and stimulate debate on the matter. Pasman and colleagues have done both.