Objectives: To investigate the associations between EOLD and experiences of the death of and/or care for a loved one and other factors.
Methods: Data from a nationwide anonymous questionnaire survey of public attitudes toward end-of-life medical care, conducted in December 2017 in Japan, was used. Participants were randomly selected from the general population (age = 20 years), and respondents who completed the questionnaire were analyzed (respondents: n = 836; effective response rate: 13.9%). Respondents were divided into two groups based on their experience of EOLD: those who had engaged in EOLD and those who had not. The main predictors were the experiences of the death of and care for a loved one. Multivariable logistic regression analyses were performed.
Results: Of the 836 respondents (male: 55.6%, aged 65 and over: 43.5%), 43.7% reported their engagement in EOLD. In the analyses, “having experiences of caring for a loved one” was associated with EOLD compared with never having experiences of caring (odds ratio 1.88, 95% confidence interval 1.35-2.64). However, having experience of the death of a loved one had no association.
Conclusion: For healthcare providers, it may be worth recognizing that the care experience of their patient’s caregiver might affect the caregiver’s own EOLD in the future.
AIM: The purpose of the present study was to collate examples of end-of-life care guidelines from various counties, examine their contents, and gain an overall picture of how end-of-life care guidance is offered to physicians and care providers internationally.
METHODS: In this study, eight researchers worked independently to source and examine national-level end-of-life care guidelines from different countries and regions. Data collected by each researcher were gathered into a unified table. The items in the table included basic information (publisher, year, URL etc.) and more specific items, such as the presence/absence of legal information and family's role in decision-making. These data were then used to identify trends, and examine the mechanics and delivery of guidance on this topic.
RESULTS: A total of 54 guidelines were included in the study. All the guidelines were published between 2000 and 2016, and 60% (n = 33) were published after 2012. The length of the guidelines varied from two to 487 pages (median 38 pages), and had different target audiences - both lay and professional. A total of 38 (70%) of the guidelines included information about the relevant laws and legal issues, 47 (87%) offered advice on withholding and withdrawing treatment, 46 (85%) discussed the family's role in decision-making and 46 (85%) emphasized the teamwork aspect of care.
CONCLUSIONS: The present findings show that end-of-life care guidelines are generally made reactively in response to the trend toward patient-centered care, and that to create effective guidelines and implement them requires multilevel cooperation between governmental bodies, healthcare teams, and patients and their families.