We are delighted that Professor Roger Watson, who is an authority on the subject of measuring feeding difficulty in patients with dementia, emphasizes the importance of our findings with regard to the feeding of patients with dementia. For us, it was not only the findings themselves that were relevant, but also the confirmation that we would not have been able to achieve these results if we had not carried out qualitative research, or more precisely: ethnographic research.
The research question formulated in this paper was discovered by means of participant observation. We started our research with the question ‘Whether and when to forgo artificial administration of fluids and food from psycho-geriatric patients’. The reason for this was that in The Netherlands wide-scale media interest and public discussion concerning this phenomenon arose from an incident in a nursing home, which has been classed as an ethical dilemma in the literature. However, little attention is paid to the ‘ordinary’ daily feeding difficulties of severely demented patients, which arise long before any question of decisions about artificial feeding arise. In practice, those involved consider this to be a much greater problem. This is not brought out into open, however, because the nurses consider it to be a very sensitive subject that can be accompanied by emotional involvement and feelings of guilt, and it is seldom discussed because it is considered to be ‘too ordinary’. It is therefore not only unlikely that we would have discovered this research question if we had used quantitative research methodology, but it would also have been less obvious if we had only held interviews. The strength of participant observation is that relevant information about sensitive subjects is more readily accessed and directly observed by the researchers in the natural context, because the ‘discovering’ is not dependent on reporting.
After formulated the research question ‘How do nurses deal with inadequate food intake and aversive behaviour of severe demented patients?’, we found out that the mechanism underlying the feelings of nurses could not easily be ‘observed’. It could be ‘discovered’ and understood through the personal experiences of the researchers.
By working with the nurses, we personally experienced the satisfaction if one of the patients managed to eat, and the feelings of guilt when an attempt was not successful. This situation is described in our article: one of the researchers (RP) stopped feeding a patient because she interpreted the behaviour of the patient as refusal to eat. When a nurse came in and succeeded in feeding the patient, RP was shocked. She found herself in the same ‘prickly’ situation as the nurses. Through experiences such as these, which happen during participation, we were able to obtain important insight. Such personal experiences provide the researcher with essential data for understanding the behaviour of nurses. It is our contention that such data can rarely (or with difficulty) be obtained through quantitative research or interviews. Experience in a real-life context is therefore a prerequisite.
However, now the problem is ‘discovered’, further exploration can be carried out by having in-depth interviews with nurses about their feelings, problems and ethical reasoning. We agree with Watson that feelings of nurses and their ways of reasoning need further exploration in order to investigate the thin line between ‘assisting to eat’ and ‘force feeding’.