JAN Forum: your views and letters

Response to: Feeding nursing homepatients with severe dementia: aqualitative study byH.R.W. Pasman, B.A.M. The,B.D. Onwuteaka-Philipsen,G. van der Wal & M.W. Ribbe(2003) Journal of AdvancedNursing 42, pp. 304–3111

Roger Watson2 BSc PhD RGN CBiol FIBiol

ILTM FRSA

Professor of Nursing, School ofNursing, Social Work and AppliedHealth Studies, University of Hull, Hull,UK. E-mail: r.watson@hull.ac.uk

There is simply not enough research intothe feeding of patients with dementiaand the paper by Pasman and colleaguesis both welcome and valuable. The paperconfirms much of what we already knowin this area and also confirms much ofwhat I suspected, but which has neverbeen investigated before.

The point that problems with feedingarise long before any decisions aboutartificial feeding are recognized is veryimportant. It also means that suchproblems arise before any formal deci-sions are made about sustaining orwithdrawing treatment. However, read-ing guidelines from learned and profes-sional bodies [British Association forParenteral and Enteral Nutrition (BAP-EN) 1999, British Medical Association(BMA) 1999] would lead one to supposethat the only important ethical decisionswere taken at this late stage. On thecontrary, in the face of early feedingdifficulties in dementia, those caring forpeople with dementia face an ethicaldecision each time a patient withdementia is approached at mealtime. Iffood is not provided then the patientwill eventually die; if food is providedand eaten then suffering may be pro-longed. Really, this is the first study toexamine the factors which may influencedecision-making in this area.

The results demonstrate that it is thenurses’ perception of why the personwith dementia is refusing food which

dictates what they think is the appro-priate course of action. The authorscorrectly indicate that scales such as theEdFED scale, which measure aversivebehaviour, do not indicate why theperson with dementia is refusing food(Watson 1996). This is one of thefundamental problems in the care ofpeople with advanced dementia: we donot fully understand their motives andtherefore do not know how to respond.

The study by Pasman and colleaguesalso demonstrates the emotional in-volvement of nurses in feeding peoplewith dementia: they report satisfactionwhen it is achieved and guilt when it isnot. In order to avert guilt and achievesatisfaction then ‘tricks’ are used to feedthe person with dementia. This surelywarrants further investigation, especiallyin the light of a later indication that thenurses did not see what they did as ‘forcefeeding’. The line between ‘assisting toeat’ and ‘force feeding’ is one whichnurses need to be clear about. We haveno right make a person with dementiaeat when it is clear that they do not wantto. However, where does force-feedingbegin and assistance end? Does the merepresentation of food to someone whohas clearly indicated an intention not toeat – whether we understand the motiveor not – constitute abuse?

It is hardly surprising, given what wedo not know about people with demen-tia and their responses to food thatdifferent cultures were observed on dif-ferent units. Different cultures arisewhere no clear guidance or knowledgeexists. It will be a long time before weknow how to help people with dementiato eat and when to cease helping.However, we will never know if we donot study this problem and stimulatedebate on the matter. Pasman and col-leagues have done both.

References

British Association for Parenteral and Enteral

Nutrition (1999) Ethical and Legal Aspects

of Clinical Hydration and NutritionalSupport. BAPEN, London.

British Medical Association (1999) Withold-ing and Withdrawing Life-ProlongingMedical Treatment. BMJ Books, London.

Watson R. (1996) Mokken scaling procedure

(MSP) applied to feeding difficulty inelderly people with dementia. InternationalJournal of Nursing Studies 33, 385–393.

Response to Watson’s critique

Anne-Mei The LLM PhD

Institute for Research in ExtramuralMedicine, Department of SocialMedicine, VU University MedicalCenter, Amsterdam, The Netherlands

and Roeline Pasman MA

Institute for Research in ExtramuralMedicine, Department of SocialMedicine and Department of NursingHome Medicine, VU University MedicalCenter, Amsterdam, The Netherlands

We are delighted that Professor RogerWatson, who is an authority on thesubject of measuring feeding difficulty inpatients with dementia, emphasizes theimportance of our findings with regardto the feeding of patients with dementia.For us, it was not only the findingsthemselves that were relevant, but alsothe confirmation that we would nothave been able to achieve these resultsif we had not carried out qualitativeresearch, or more precisely: ethnograph-ic research.

The research question formulated inthis paper was discovered by means ofparticipant observation. We started ourresearch with the question ‘Whether andwhen to forgo artificial administrationof fluids and food from psycho-geriatricpatients’. The reason for this was that inThe Netherlands wide-scale media in-terest and public discussion concerningthis phenomenon arose from an incidentin a nursing home, which has beenclassed as an ethical dilemma in theliterature. However, little attention ispaid to the ‘ordinary’ daily feedingdifficulties of severely demented

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patients, which arise long before anyquestion of decisions about artificialfeeding arise. In practice, those involvedconsider this to be a much greaterproblem. This is not brought out intoopen, however, because the nurses con-sider it to be a very sensitive subject thatcan be accompanied by emotional in-volvement and feelings of guilt, and it isseldom discussed because it is consid-ered to be ‘too ordinary’. It is thereforenot only unlikely that we would havediscovered this research question if wehad used quantitative research meth-odology, but it would also have beenless obvious if we had only held inter-views. The strength of participant ob-servation is that relevant informationabout sensitive subjects is more readilyaccessed and directly observed by theresearchers in the natural context, be-cause the ‘discovering’ is not dependenton reporting.

After formulated the research ques-tion ‘How do nurses deal with inad-equate food intake and aversivebehaviour of severe demented patients?’,we found out that the mechanism un-derlying the feelings of nurses could noteasily be ‘observed’. It could be ‘discov-ered’ and understood through the per-sonal experiences of the researchers.

By working with the nurses, we per-sonally experienced the satisfaction ifone of the patients managed to eat, andthe feelings of guilt when an attemptwas not successful. This situation isdescribed in our article: one of theresearchers (RP) stopped feeding a pa-tient because she interpreted the beha-viour of the patient as refusal to eat.When a nurse came in and succeeded infeeding the patient, RP was shocked.She found herself in the same ‘prickly’situation as the nurses. Through experi-ences such as these, which happen dur-

ing participation, we were able to obtainimportant insight. Such personal experi-ences provide the researcher with essen-tial data for understanding thebehaviour of nurses. It is our contentionthat such data can rarely (or withdifficulty) be obtained through quanti-tative research or interviews. Experiencein a real-life context is therefore aprerequisite.

However, now the problem is ‘dis-covered’, further exploration can becarried out by having in-depth inter-views with nurses about their feelings,problems and ethical reasoning. Weagree with Watson that feelings ofnurses and their ways of reasoning needfurther exploration in order to investi-gate the thin line between ‘assisting toeat’ and ‘force feeding’.

JAN Forum: your views and letters

� 2003 Blackwell Publishing Ltd, Journal of Advanced Nursing, 42(3), 312–313 313