Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Medical Ethics 39 (2):104-109 (2013)
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
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Muriel R. Gillick (2012). Doing the Right Thing: A Geriatrician's Perspective on Medical Care for the Person with Advanced Dementia. Journal of Law, Medicine & Ethics 40 (1):51-56.
Piero Antuono & Jan Beyer (1999). The Burden of Dementia: A Medical and Research Perspective. Theoretical Medicine and Bioethics 20 (1):3-13.
Sven Helin & Johan Sandström (2008). Codes, Ethics and Cross-Cultural Differences: Stories From the Implementation of a Corporate Code of Ethics in a MNC Subsidiary. [REVIEW] Journal of Business Ethics 82 (2):281 - 291.
Ruud ter Meulen & Katharine Wright (2012). Family Solidarity and Informal Care: The Case of Care for People with Dementia. Bioethics 26 (7):361-368.
Jan De Lepeleire & Jan Heyrman (1999). Diagnosis and Management of Dementia in Primary Care at an Early Stage: The Need for a New Concept and an Adapted Procedure. Theoretical Medicine and Bioethics 20 (3):213-226.
F. Cheng, Mary Ip, K. K. Wong & W. W. Yan (1998). Critical Care Ethics in Hong Kong: Cross-Cultural Conflicts as East Meets West. Journal of Medicine and Philosophy 23 (6):616 – 627.
Mary C. Olson (1999). “The Heart Still Beat, but the Brain Doesn't Answer”. Theoretical Medicine and Bioethics 20 (1):85-95.
Raymond J. Kolcaba (2003). Fiduciary Decision-Making Using Comfort Care. Philosophy in the Contemporary World 10 (1):81-86.
R. N. Swanson (2010). A Booklet of Comfort for the Sick, & On the Christian Knight, by Johann Spangenberg, 1548. Translated, Edited and Introduced by Robert Kolb. Heythrop Journal 51 (3):492-492.
William F. May (2012). Testing the Medical Covenant: Caring for Patients with Advanced Dementia. Journal of Law, Medicine & Ethics 40 (1):45-50.
David Bridges (ed.) (1997). Education, Autonomy, and Democratic Citizenship: Philosophy in a Changing World. Routledge.
David J. Doukas, Using the Family Covenant in Planning End-of-Life Care: Obligations and Promises of Patients, Families, and Physicians.
Barry Hoffmaster & Wayne Weston (1987). The Patient in the Family and the Family in the Patient. Theoretical Medicine and Bioethics 8 (3).
Els Bryon, Bernadette Dierckx de Casterlé & Chris Gastmans (2011). 'Because We See Them Naked' – Nurses' Experiences in Caring for Hospitalized Patients with Dementia: Considering Artificial Nutrition or Hydration (Anh). Bioethics 26 (6):285-295.
Ursula Naue & Thilo Kroll (2009). 'The Demented Other': Identity and Difference in Dementia. Nursing Philosophy 10 (1):26-33.
Added to index2012-11-11
Total downloads9 ( #351,041 of 1,792,630 )
Recent downloads (6 months)4 ( #207,535 of 1,792,630 )
How can I increase my downloads?