Search

Background Research on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. Methods We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. Results Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: "Pain and Symptoms Controlled," "Being Provided Basic Care," and "A Place like Home." Other themes were "Having Preferences Met," "Receiving Respect as a Person," "Care for Caregivers," "Identity Being Preserved," "Being Connected," and "Satisfaction with Life and Spiritual Well-being." "Care for Caregivers" showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. Conclusions The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote

BACKGROUND: A majority of patients with cancer who are seriously ill have a preference of dying at home. However, only a minority of patients actually die at home in most Western countries.AIM: To explore factors associated with place of death in an unselected population of patients with cancer.DESIGN OF STUDY: Case-control study.SETTING: County of Funen, Denmark.METHOD: Register linkage from six Danish healthcare registers.RESULTS: The GP's home visit during the last 3 months before death was inversely associated with dying in hospital (adjusted odds ratio [OR] = 0.08, 95% confidence interval [CI] = 0.06 to 0.12) and so were community nurses visiting the home (OR = 0.36, 95% CI = 0.26 to 0.48). Furthermore, being married (OR = 0.68, 95% CI = 0.56 to 0.85), and age at death of 40-65 years (OR = 0.70, 95% CI = 0.56 to 0.90) seemed to have an effect. Hospital death was associated with survival time of less than 1 month (OR = 2.27, 95% CI = 1.69 to 3.13). Type of cancer, sex, or residence (urban versus rural) were not associated with a hospital death in this multivariate analysis.CONCLUSIONS: Dying at home was, to a higher extent, associated with GP visit and, to a lesser extent, community nurse visit than with clinical and sociodemographic characteristics of patients with cancer. In our view, these findings indicate the importance of the GP in particular. To increase the opportunity to die at home, more research is needed on the role of the GP and the interface between GPs and other providers of health care at home for patients who are terminally ill with cancer.

BACKGROUND: A majority of patients with cancer who are seriously ill have a preference of dying at home. However, only a minority of patients actually die at home in most Western countries.AIM: To explore factors associated with place of death in an unselected population of patients with cancer.DESIGN OF STUDY: Case-control study.SETTING: County of Funen, Denmark.METHOD: Register linkage from six Danish healthcare registers.RESULTS: The GP's home visit during the last 3 months before death was inversely associated with dying in hospital (adjusted odds ratio [OR] = 0.08, 95% confidence interval [CI] = 0.06 to 0.12) and so were community nurses visiting the home (OR = 0.36, 95% CI = 0.26 to 0.48). Furthermore, being married (OR = 0.68, 95% CI = 0.56 to 0.85), and age at death of 40-65 years (OR = 0.70, 95% CI = 0.56 to 0.90) seemed to have an effect. Hospital death was associated with survival time of less than 1 month (OR = 2.27, 95% CI = 1.69 to 3.13). Type of cancer, sex, or residence (urban versus rural) were not associated with a hospital death in this multivariate analysis.CONCLUSIONS: Dying at home was, to a higher extent, associated with GP visit and, to a lesser extent, community nurse visit than with clinical and sociodemographic characteristics of patients with cancer. In our view, these findings indicate the importance of the GP in particular. To increase the opportunity to die at home, more research is needed on the role of the GP and the interface between GPs and other providers of health care at home for patients who are terminally ill with cancer.