Palliative care advice for dementia ‘culturally sensitive’

The translation and adaptation of a Canadian palliative care decision-making booklet for patients with dementia and their families into Italian, Dutch, and Japanese reveals several culturally sensitive topics, show study results.

Overall, the Italian translation followed the Canadian original most closely, while the Japanese version was the most different, remark the researchers in the Journal of Medical Ethics.

The Dutch and Japanese versions made considerable extension to areas concerning underlying considerations and legal and professional standards, respectively, suggesting an attempt to "convince" readers, rather than "reassure" them, as the Canadian booklet does, says the research team.

"We may conclude that professional caregivers practicing in nursing homes across very different cultures may be convinced of the applicability of palliative care to dementia if local sensitivities, mostly medical end-of-life decisions with strong ethical and legal components, are addressed," say Jenny van der Steen (VU University Medical Center, Amsterdam, the Netherlands) and colleagues.

The Canadian booklet was translated - for reasons of cost-effectiveness - rather than developing new booklets into three other languages, modified for fluency, and adjusted for country-specific medical, ethical, and legal standards. For the current study, van der Steen and co-investigators had the translated versions back-translated in order to evaluate adherence to the Canadian booklet's central message.

The central message of the booklet was that "dementia is a terminal disease and palliative care therefore applies," explain van der Steen et al.

While the Dutch and Italian booklets stated that physicians make the medical decisions in consultation with the patient or his/her representative, the Italian version gave more authority to the physician, while in the Japanese version, nursing staff and careworkers played no role.

All four versions are concerned with protecting the wishes of the patient. However, in Canada and Japan a patient representative gives consent rather than making medical decisions, but in Italy and the Netherlands, family members - while regulated - make decisions on behalf of the patient they represent.

The Japanese booklet had a tendency toward promoting life-prolonging treatment, and "maintaining and protecting life," while the Italian and Canadian versions were similar to each other, explaining that intravenous hydration/nutrition prolongs discomfort. The Dutch version expanded this same view.

While the Dutch booklet outlined the rules and regulations of euthanasia as it exists in the Netherlands, and the Japanese version included the Canadian acknowledgement that families may feel that the patients' suffering should end, the Italian version emphasized that euthanasia is "absolutely forbidden."

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