Dataset Information

A mixed methods investigation of end-of-life surrogate decisions among older adults.

ABSTRACT:

Background

A large number of end-of-life decisions are made by a next-of-kin for a patient who has lost their decision-making capacity. This has given rise to investigations into how surrogates make these decisions. The experimental perspective has focused on examining how the decisions we make for others differ from our own, whereas the qualitative perspective has explored surrogate insights into making these decisions.

Methods

We conducted a mixed methods study to bring these two perspectives together. This is crucial to comparing decision outcomes to the decision process. We asked older adult partners to make end-of-life decisions for each other. They then took part in a semi-structured interview about their decision process. Transcripts were analysed using thematic analysis.

Results

24 participants took part in the study. Surrogates were more likely to take a life-saving treatment at the risk of a diminished quality of life for their partner than for themselves. This was consistent with their transcripts which showed that they wanted to give their partner a better chance of living. Although there was evidence of surrogate inaccuracy in the decision task, participants overwhelmingly reported their intention to make a decision which aligns with the substituted judgment standard. However, uncertainty about their wishes pushed them to consider other factors.

Conclusions

Taking a mixed methods approach allowed us to make novel comparisons between decision outcome and process. We found that the intentions of surrogates broadly align with the expectations of the substituted judgment standard and that previous discussions with their partner helps them to make a decision.

SUBMITTER: Batteux E

PROVIDER: S-EPMC7119279 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A mixed methods investigation of end-of-life surrogate decisions among older adults.

Batteux Eleonore E Ferguson Eamonn E Tunney Richard J RJ

BMC palliative care 20200402 1

<h4>Background</h4>A large number of end-of-life decisions are made by a next-of-kin for a patient who has lost their decision-making capacity. This has given rise to investigations into how surrogates make these decisions. The experimental perspective has focused on examining how the decisions we make for others differ from our own, whereas the qualitative perspective has explored surrogate insights into making these decisions.<h4>Methods</h4>We conducted a mixed methods study to bring these tw ...[more]

PMID: 32241277

Similar Datasets

Project description:INTRODUCTION:Shared decision making is an interpersonal process whereby healthcare providers collaborate with and support patients in decision-making. Older adults receiving home care need support with decision-making. We will explore what older adults receiving home care and their caregivers need for making better health-related decisions. METHODS AND ANALYSIS:This two-phase sequential exploratory mixed methods study will be conducted in a pan-Canadian healthcare organisation, SE Health. First, we will create a participant advisory group to advise us throughout the research process. In phase 1 (qualitative), we will recruit a convenience sample of 15-30 older adults and caregivers receiving home care to participate in open-ended semi-structured interviews. Phase 1 participants will be invited to share what health-related decisions they face at home and what they need for making better decisions. In phase 2 (quantitative), interdisciplinary health and social care providers will be invited to answer a web-based survey to share their views on the decisional needs of older adults and their caregivers. The survey will include questions informed by findings from qualitative interviews in phase 1, and a workbook for assessing decisional needs based on the Ottawa Decision Support Framework. Finally, qualitative and quantitative results will be triangulated (by methods, investigator, theory and source) to develop a comprehensive understanding of decision-making needs from the perspective of older adults, caregivers and health and social care providers. We will use the quality of mixed methods studies in health services research guidelines and the Checklist for Reporting the Results of Internet E-Surveys checklist. ETHICS AND DISSEMINATION:Ethics approval was obtained from the research ethics boards at Southlake Regional Health Centre and Université Laval. This study will inform the design of decision support interventions. Further dissemination plans include summary briefs for study participants, tailored reports for home care decision makers and policy makers, and peer-reviewed publications. TRIAL REGISTRATION NUMBER:NCT04327830.

Project description:BackgroundEnd-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults' prioritizations and reasoning about values and preferences for future end-of-life care change over time.MethodsUsing a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5-12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants' reasoning about card choices were explored with longitudinal qualitative analysis.ResultsStability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants' health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning.ConclusionsLongitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals' end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.

Project description:BackgroundGhana is experiencing an epidemiological shift in public health issues toward non-communicable diseases that are underpinned by modifiable health behaviors. Physical activity rates have decreased, especially among older adults, coinciding with urbanization and an increase in sedentary work. Community-based physical activity programs are a recommended method of increasing physical activity levels; however, none currently exist in Ghana. The aim of this exploratory study was to determine older Ghanaian adults' perceptions of physical activity and asses fit and feasibility of adapting and delivering a physical activity program for this population.MethodsThrough a concurrent exploratory mixed-methods design, data were gathered from Ghanaian older adults (N = 123) during focus groups (N = 10) conducted at one diabetes clinic and nine churches across three urban areas. Qualitative data were collected using a semi-structured script that prompted for responses related to physical activity perceptions and the fit and feasibility of physical activity program characteristics. Quantitative data were collected through a questionnaire assessing participant demographics, physical activity levels, and health rating as well as physical activity knowledge and self-efficacy.ResultsFindings indicate that older adults in Ghana have a need for and an interest in physical activity promotion. Participants had positive perceptions of being physically active, but were unaware of physical activity guidelines and how to meet them. Peer influence and health care providers' recommendations were motivating factors for physical activity participation. As for desired physical activity program characteristics, participants expressed interest in group-based activities and becoming peer leaders and preference for a church-based program.ConclusionsThe results suggest that a group-based physical activity program encouraged by health care providers and delivered at churches through a train-the-trainer model would be well received by aging adults from three urban areas of Ghana. In addition, education on physical activity types is needed, along with better dissemination and education on Ministry of Health physical activity guidelines. This exploratory work highlights preliminary support for a group- and community-based physical activity program for the aging population in Ghana. Beginning with the end in mind, these program characteristics should be considered when adopting, adapting, and implementing an intervention with this population.

Dataset Information

A mixed methods investigation of end-of-life surrogate decisions among older adults.

Background

Methods

Results

Conclusions

Publications

A mixed methods investigation of end-of-life surrogate decisions among older adults.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure