Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan

BMC Palliative Care

the mySupport study group¹  Irene Hartigan²  Nicola Cornally²  Hana Vankova³  Marcel Arcand⁴  Laura Bavelaar⁵  Jenny T. van der Steen⁵  Paola Di Giulio⁶  Adrienne McCann⁷  Ladislav Volicer⁸  Kevin Brazil⁹  Sharon Kaasalainen^1,10 

[1] ;Catherine McAuley School of Nursing and Midwifery, University College Cork;Center for Palliative Care, Prague, and Third Faculty of Medicine, Charles University;Department of Family Medicine, University of Sherbrooke;Department of Public Health and Primary Care, Leiden University Medical Center;Department of Sciences of Public Health and Pediatrics, Turin University;Innovation Value Institute, Maynooth University/Age Friendly Ireland;School of Aging Studies, University of South Florida;School of Nursing and Midwifery, Queen’s University Belfast;School of Nursing, McMaster University;

关键词: Decision aid;    Dementia;    Education;    End of life;    Family caregivers;    Nursing homes;   

DOI  :  10.1186/s12904-022-00962-z

来源: DOAJ

【 摘 要 】

Abstract Background To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. Methods We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. Results The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. Conclusions We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

【 授权许可】

Unknown