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Alzheimer's & Dementia (Amsterdam,... 2024We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his...
We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia.
PubMed: 38496715
DOI: 10.1002/dad2.12531 -
Alzheimer's & Dementia (Amsterdam,... 2024
PubMed: 38496713
DOI: 10.1002/dad2.12533 -
Omega Mar 2024End-of-life (EoL) planning and the drafting of advance care directives (ACD) are challenging for older adults. As part of a mixed study, the content of 18...
End-of-life (EoL) planning and the drafting of advance care directives (ACD) are challenging for older adults. As part of a mixed study, the content of 18 semi-structured interviews with Swiss community-dwelling older adults was analyzed to investigate contextual and interactional aspects that might influence their choice to complete ACD. Results show that EoL planning vary greatly. Three types of planners were highlighted: the solo planners, the collaborative planners, and the delegators. Each represents a specific way of conceiving autonomy, the usefulness of ACD and of involving third parties in the decision-making process. Whereas for solo planners, ACD is a personal, rational affair, for collaborative planners and delegators, reflection and decisions on EoL issues are interactional and iterative processes. The results suggest that health and social care professionals would benefit from taking into consideration the various types of planning, in order to provide the best support to older adults for ACD completion.
PubMed: 38483438
DOI: 10.1177/00302228241239809 -
BDJ Open Mar 2024To outline the extent to which practice owners in Dutch oral healthcare practices (OHPs) use a directive and supportive leadership styles, to map out which goals...
AIMS
To outline the extent to which practice owners in Dutch oral healthcare practices (OHPs) use a directive and supportive leadership styles, to map out which goals practice owners in Dutch OHPs consider most important when choosing collaboration within the practice and to identify the reasons why oral healthcare professionals choose to engage in collaborative practice.
MATERIALS AND METHODS
A survey involving 802 general dental practitioners, dental hygienists, and prevention assistants was conducted. The questionnaire covered, among other subjects, leadership styles and reasons for collaboration. Data analysis included descriptive statistics, chi-square tests, one-way ANOVA, linear regression, and logistic regression.
RESULTS
Compared to employees, practice owners ascribe to themselves more characteristics of both directive and supportive leadership. The most frequently mentioned reasons for choosing a practice form that involves collaboration were the possibilities to provide the best care and the desire to focus on prevention. Healthcare providers chose to work in a collaborative practice for several reasons, which were associated with profession, age and gender.
CONCLUSIONS
The degree of directive and supportive leadership among practice owners in dental care practices in the Netherlands showed a strong correlation. The most frequently mentioned reasons for choosing collaboration were related to healthcare content.
PubMed: 38459013
DOI: 10.1038/s41405-024-00200-z -
Journal of Hospice and Palliative Care Mar 2024Advance directives (ADs) are legal documents that outline a person's preferences or decisions regarding end-of-life care ahead of time. In Korea, there is insufficient...
PURPOSE
Advance directives (ADs) are legal documents that outline a person's preferences or decisions regarding end-of-life care ahead of time. In Korea, there is insufficient awareness and knowledge about ADs among patients undergoing hemodialysis. This study explored the relationship between perceptions of a good death, knowledge about ADs, and attitudes toward ADs in this patient population.
METHODS
This cross-sectional survey enrolled 119 hemodialysis patients from a secondary hospital in 2021. The participants completed a self-administered questionnaire, and the data were analyzed using the t-test, analysis of variance, Pearson correlation coefficients, Spearman rank correlation coefficients, and multiple regression analysis.
RESULTS
The average score for perceptions of a good death among hemodialysis patients was 2.80 out of 4, with clinical symptoms identified as the most critical factor. The average scores for knowledge about ADs and attitudes toward ADs were 5.69 out of 9 and 2.79 out of 4, respectively. There was a positive correlation between perceptions of a good death and attitudes toward ADs (r=0.34, P<0.001), as well as between knowledge about Ads and attitudes toward ADs (r=0.19, P=0.037). Factors influencing attitudes toward Ads included employment status (β=0.22, P=0.011), education level (β=0.22, P=0.013), and perceptions of a good death (β=0.29, P=0.001), which accounted for 24.8% of the variance in attitudes toward ADs.
CONCLUSION
A positive perception of a good death among patients undergoing hemodialysis was associated with a positive attitude toward ADs. Educational programs are needed to improve individuals' understanding of a good death and encourage the development of end-of-life care plans.
PubMed: 38449830
DOI: 10.14475/jhpc.2024.27.1.11 -
PloS One 2024Complementary Health Approaches (CHA) are commonly used by children with cancer; however, a few health care providers (HCPs) inquire about the use of CHA. A standardized...
Assessment of complementary health approaches use in pediatric oncology: Modification and preliminary validation of the "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires.
OBJECTIVE
Complementary Health Approaches (CHA) are commonly used by children with cancer; however, a few health care providers (HCPs) inquire about the use of CHA. A standardized questionnaire could facilitate such clinical discussions. We aimed to adapt and determine the face and content validity of the "Which Health Approaches and Treatments are you using?" (WHAT) child and parent-report questionnaires in pediatric oncology.
METHODS
An electronic Delphi survey that included children with cancer (8-18 years), parents, and HCPs and CHA researchers was conducted to reach consensus on the content of the WHAT questionnaires in pediatric oncology. Children and parents from the Hospital for Sick Children (SickKids), and HCPs and researchers from the International Society of Pediatric Oncology and Pediatric Complementary and Alternative Medicine Research and Education Network completed the survey. To determine the face and content validity of the questionnaires, two iterative cycles of individual interviews were conducted with purposive samples of children (8-18 years), parents, and HCPs from SickKids.
RESULTS
Consensus was reached on all domains and items of the original WHAT questionnaires after one Delphi cycle (n = 61). For face and content validity testing, the first cycle of interviews (n = 19) revealed that the questionnaires were mostly comprehensive and relevant. However, the paper-based format of the original WHAT was not user-friendly, and generic items were vague and not aimed at facilitating clinical dialogues about CHA use. The WHAT questionnaires were then modified into electronic cancer-specific self- and proxy-report questionnaires including 13 and 15 items, respectively. The second cycle (n = 21) showed no need for further changes.
CONCLUSIONS
The modified electronic cancer-specific WHAT questionnaires showed adequate face and content validity. The next step is to determine inter-rater reliability, construct validity, and feasibility of administration of the modified WHAT questionnaires in pediatric oncology.
Topics: Child; Humans; Reproducibility of Results; Medical Oncology; Advance Directives; Consensus; Neoplasms
PubMed: 38446765
DOI: 10.1371/journal.pone.0294393 -
Journal of Patient-reported Outcomes Mar 2024Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the...
BACKGROUND
Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairment amongst older people, hence proxy reporting is often utilised as the default option. Internationally, there is little evidence on the impact of proxy perspective on interrater agreement between self and proxy report.
OBJECTIVES
To assess the impacts of (i) cognition level and (ii) proxy perspective on interrater agreement using a utility instrument, the Quality of Life-Aged Care Consumers (QOL-ACC).
METHODS
A cross-sectional study was undertaken with aged care residents and family member proxies. Residents completed the self-report QOL-ACC, while proxies completed two proxy versions: proxy-proxy perspective (their own opinion), and proxy-person perspective (how they believe the resident would respond). Interrater agreement was assessed using quadratic weighted kappas for dimension-level data and concordance correlation coefficients and Bland-Altman plots for utility scores.
RESULTS
Sixty-three residents (22, no cognitive impairment; 41, mild-to-moderate cognitive impairment) and proxies participated. In the full sample and in the mild-to-moderate impairment group, the mean self-reported QOL-ACC utility score was significantly higher than the means reported by proxies, regardless of perspective (p < 0.01). Agreement with self-reported QOL-ACC utility scores was higher when proxies adopted a proxy-person perspective.
CONCLUSION
Regardless of cognition level and proxy perspective, proxies tend to rate quality of life lower than residents. Further research is needed to explore the impact of such divergences for quality assessment and economic evaluation in aged care.
Topics: Humans; Aged; Quality of Life; Self Report; Cross-Sectional Studies; Advance Directives; Cognition
PubMed: 38436803
DOI: 10.1186/s41687-024-00705-z -
Oncology Research and Treatment 2024Early integration of palliative care and advance care planning (ACP) play an increasingly important role in the treatment of patients with advanced cancer. Advance... (Observational Study)
Observational Study
INTRODUCTION
Early integration of palliative care and advance care planning (ACP) play an increasingly important role in the treatment of patients with advanced cancer. Advance directives (ADs) and patients' preferences regarding end-of-life (EoL) care are important aspects of ACP. In the outpatient setting, the prevalence of those documents and EoL care wishes is not well investigated, and changes in the longitudinal course are poorly understood.
METHODS
From June 2020 to August 2022, 67 outpatients with advanced solid tumors undergoing palliative cancer therapy were interviewed on the topic of ACP in a longitudinal course. From this database, the prevalence of ADs, healthcare proxy, EoL care wishes, and the need for counseling regarding these issues were collected. In addition, EoL care wishes were examined for their stability.
RESULTS
Fifty-one patients (76.1%) reported having ADs, and 41 patients (61.2%) reported having a healthcare proxy. Nineteen patients (37.3%) with ADs and 11 patients (68.7%) without ADs indicated a wish for counseling. Reported EoL care wishes remained stable over a period of approximately 6 months. Nevertheless, intraindividual changes occurred over time within the different EoL care preferences. The desire for resuscitation and dialysis were significantly higher in men than in women (resuscitation: 15 of 21 men [71.4%] versus 9 of 22 women [40.9%], odds ratio [OR] 3.611, 95% confidence interval [CI], 1.01-12.89, p = 0.048; dialysis: 16 of the 23 men [69.6%] versus 9 of the 25 women [36.0%], OR: 4.063, 95% CI: 1.22-13.58, p = 0.023).
CONCLUSION
Our results show a reasonably high percentage of ADs and healthcare proxies in our study cohort. The observed stability of EoL requests encourages the implementation of structured queries for ADs and healthcare proxy for outpatients undergoing palliative treatment. Our data suggest that gender-specific characteristics should be further investigated in this context.
Topics: Humans; Male; Female; Palliative Care; Neoplasms; Terminal Care; Aged; Prospective Studies; Middle Aged; Patient Preference; Advance Care Planning; Sex Factors; Outpatients; Advance Directives; Aged, 80 and over; Adult
PubMed: 38432223
DOI: 10.1159/000538112 -
BMC Palliative Care Feb 2024People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by... (Observational Study)
Observational Study
BACKGROUND
People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy.
METHOD
A retrospective observational cohort analysis was completed of CMC records created 01/01/2010-31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients' statements of preference.
RESULTS
1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of 'years' and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice.
DISCUSSION
Compared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved.
CONCLUSIONS
This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice.
Topics: Humans; Aged; Palliative Care; Retrospective Studies; Mental Disorders; Advance Care Planning; Delivery of Health Care
PubMed: 38403633
DOI: 10.1186/s12904-024-01381-y -
BMC Medical Research Methodology Feb 2024Successfully recruiting male participants to complete a healthcare related study is important for healthcare study completion and to advance our clinical knowledgebase....
BACKGROUND
Successfully recruiting male participants to complete a healthcare related study is important for healthcare study completion and to advance our clinical knowledgebase. To date, most research studies have examined the barriers and facilitators of female participants in longitudinal healthcare-related studies with limited information available about the needs of males in longitudinal research. This systematic review examines the unique barriers and facilitators to male recruitment across longitudinal healthcare-related research studies.
METHODS
Following PRIMSA guidelines, MEDLINE, Embase, CINAHL and Web of Science databases were systematically searched using the terms recruitment and/or retention, facilitators and/or barriers and longitudinal studies from 1900 to 2023 which contained separate data on males aged 17-59 years. Health studies or interventions were defined longitudinal if they were greater than or equal to 12 weeks in duration with 3 separate data collection visits.
RESULTS
Twenty-four articles published from 1976-2023 met the criteria. One-third of the studies had a predominantly male sample and four studies recruited only male participants. Males appear disinterested towards participation in health research, however this lack of enthusiasm can be overcome by clear, non-directive communication, and studies that support the participants interests. Facilitating factors are diverse and may require substantial time from research teams.
CONCLUSIONS
Future research should focus on the specific impact of these factors across the spectrum of longitudinal health-related studies. Based on the findings of this systematic review, researchers from longitudinal health-related clinical trials are encouraged to consider male-specific recruitment strategies to ensure successful recruitment and retention in their studies.
REGISTRATION
This systemic review is registered with the PROSPERO database (CRD42021254696).
Topics: Humans; Male; Female; Health Services Research; Communication; Data Collection; Research Personnel
PubMed: 38389065
DOI: 10.1186/s12874-024-02163-z