PAPER Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation Jenny T van der Steen, 1 Cees M P M Hertogh, 1 Tjomme de Graas, 1 Miharu Nakanishi, 2 Franco Toscani, 3 Marcel Arcand 4 1 Department of general practice & elderly care medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands 2 Institute for Health Economics and Policy, Minato-ku, Tokyo, Japan 3 Lino Maestroni Foundation- Palliative Medicine Research Institute, Cremona, Italy 4 Department of Family Medicine, University of Sherbrooke, Sherbrooke, QC, Canada Correspondence to Dr Jenny T van der Steen, Department of general practice & elderly care medicine, VU University Medical Center, EMGO Institute for Health and Care Research, Van der Boechorststraat 7, Amsterdam 1081 BT, The Netherlands; j.vandersteen@vumc.nl TdG: Affiliation during data analyses; currently not employed by the University. Received 27 June 2012 Revised 26 September 2012 Accepted 16 October 2012 ABSTRACT Introduction Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive. Methods To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative content analyses, we grouped and compared adaptations to understand culturally sensitive aspects. Results Three themes emerged: (1) relationships among patient, physician and other professionals—the authority of the physician was more explicit in adapted versions; (2) patient rights and family position—adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively. Conclusions Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in dementia. INTRODUCTION Dementia is a progressive illness which limits prognosis. In the course of the disease trajectory, patients and families frequently develop palliative care needs. 1 Family members are usually involved in care and support of patients with dementia, including in end-of-life decision making. This may present ethical and emotional dilemmas. To support their decision making, families need adequate and customised information about dementia and the natural evolution of the progres- sive disease, and on care and treatment options including on comfort or palliative care which are often used as synonyms. 12 To support family, a guide was developed in French and English in Canada in 2005 in the form of a booklet on comfort care at the end of life with dementia 3 (box 1). This booklet was intended primarily to support family members and relatives of people with dementia residing in institutional settings. It was based on the international literature, but also on specific needs elicited in qualitative research into decision making in Quebec. 4 It explains treatment options, but was written explicitly from the per- spective of palliative care. It provides guidance based on the assumption that dementia is a ter- minal disease and palliative care therefore applies, rather than providing neutral information on treat- ment options—including life-prolonging interven- tions—which is common for decision aids. 5 The booklet concerned sensitive information tailored to the Canadian situation but the terminal nature of the dementia and families’ information needs may be universal to some extent. We decided to adapt the booklet to other countries rather than develop- ing new booklets for each country for a number of reasons that relate to better cost-effectiveness. 6 First, it was based on thorough qualitative research on family experiences; 4 second, preliminary evi- dence of effectiveness was available: it was shown to improve communication between nursing staff and family in the area of development; 7 third, it appeared well balanced with the limitation that there was no accepted concept of what comprises palliative care in dementia at that time as appeared recently; 8 and fourth, it was well written for non- academics. Finally, at that time, to our best knowl- edge, no other such booklet had been developed. There are, however, considerable cultural differences between end-of-life decision making and caregiving practices, for example, between South European countries such as Italy versus other, more Northern European countries, 9 10 and between Western coun- tries and Japan, 11 12 such as on the role of profes- sional and family caregivers, and the value attached to living as long as possible. An international team prepared for its imple- mentation in Italy, Japan and the Netherlands and found, as others, 6 that translation alone would not suffice. The booklet was translated and adapta- tions deemed necessary for local acceptability were carried through. Substantial adaptations in several booklets were necessary to guarantee a basic level of acceptability, for example, to meet different legal frameworks/regulations. This mostly reflects the ‘sensitive’ nature of the matter. In this J Med Ethics 2012;00:1–6. doi:10.1136/medethics-2012-100903 1 Global medical ethics JME Online First, published on November 10, 2012 as 10.1136/medethics-2012-100903 Copyright Article author (or their employer) 2012. Produced by BMJ Publishing Group Ltd under licence. group.bmj.com on November 11, 2012 - Published by jme.bmj.com Downloaded from