Dataset Information

Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review.

ABSTRACT:

Background

Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements.

Methods

Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis).

Results

Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework.

Conclusion

The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL.

SUBMITTER: Motamedi M

PROVIDER: S-EPMC8690959 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundThis scoping review aimed to investigate the presence of discordance or concordance in the perceptions of end-of-life (EOL) care quality between consumers (i.e. patients aged over 60 in their last years of life and/or their informal caregivers) and clinicians, to inform further improvements in end-of-life care service delivery.MethodsA scoping review of qualitative and quantitative studies was systematically undertaken by searching for English language publications in MEDLINE database and manual reference search of eligible articles. Thematic analysis was employed to identify and extract common concordance and discordance themes leading to the development of analytical constructs. Articles were eligible for inclusion if they reported on consumers' (i.e. older patients aged 60 + years in their final years of life and/or their informal caregivers) and clinicians' (doctors, nurses, social workers, etc.) perspectives on quality of medical, surgical or palliative/supportive care administered to older adults in the last year of life across all healthcare settings.ResultsOf the 2736 articles screened, 21 articles were included. Four themes identified concordance between consumers' and clinicians' perceptions of care quality: holistic patient care; coordinated care that facilitated EOL; the role of family at EOL; and impact of prognostic uncertainty on care planning. Three themes emerged for discordance of perceptions: understanding the patient needs at EOL; capacity of healthcare system/providers to accommodate family needs; and knowledge and communication of active or palliative care at EOL.ConclusionsWhile progress has been made on promoting patient autonomy and respecting the family role in representing patient's best interest, gaps remain in terms of care coordination, communication of prognosis, public understanding of the meaning of goals of care including de-escalation of management and enactment of advance care directives by clinicians for people with diminished decision capacity. Public understanding of the meaning of "comfort" care and the need to prevent over-treatment are essential for their satisfaction with care and their ability to embrace the concept of a good death.

Project description:BackgroundThe existing evidence shows that the pattern of health expenditure differs considerably between people at the end-of-life and people in other periods of their lives. The awareness of these differences, combined with a detailed analysis of future mortality rates is one of the key pieces of information needed for health spending prognoses. The general objective of this review was to identify and map the existing empirical evidence on end-of-life expenditure related to health care for the older population.MethodsTo achieve the objective of the study a systematic scoping review was performed. There were 61 studies included in the analysis. The project has been registered through the Open Science Framework.ResultsThe included studies cover different kinds of expenditure in terms of payers, providers and types of services, although most of them include analyses of hospital spending and nearly 60% of analyses were conducted for insurance expenditure. The studies provide very different results, which are difficult to compare. However, all of the studies analyzing expenditure by survivorship status indicate that expenditure on decedents is higher than on survivors. Many studies indicate a strong relationship between health expenditure and proximity to death and indicate that proximity to death is a more important determinant of health expenditure than age per se. Drawing conclusions on the relationship between end-of-life expenditure and socio-economic status would be possible only by placing the analysis in a broader context, including the rules of a health system's organization and financing. This review showed that a lot of studies are focused on limited types of care, settings, and payers, showing only a partial picture of health and social care systems in the context of end-of-life expenditure for the older population.ConclusionThe results of studies on end-of-life expenditure for the older population conducted so far are largely inconsistent. The review showed a great variety of problems appearing in the area of end-of-life expenditure analysis, related to methodology, data availability, and the comparability of results. Further research is needed to improve the methods of analyses, as well as to develop some analysis standards to enhance research quality and comparability.

Project description:BackgroundNursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff.ObjectiveThis review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver.DesignScoping review.MethodsA literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review.ResultsNine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills.ConclusionsThis review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.

Project description:IntroductionAs the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in elder care, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance to the elderly, and to fellow citizens with disabilities. This review aims to identify the diversity of Canadian national, provincial and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the elder care policy environment.Methods and analysisGiven the vast and multidisciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O'Malley that entails six stages, including: (1) identifying the research question(s); (2) searching for relevant studies; (3) selecting studies; (4) charting the data; (5) collating, summarising and reporting the results; (6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible. We will pursue an iterative integrated knowledge translation (iKT) strategy engaging our knowledge users through all stages of the review.Ethics and disseminationBy adopting an iKT strategy we will ensure our knowledge users directly contribute to the project's policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. Our intent is to develop an online, free-access evidence repository that catalogues the full range of Canada's English language informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies. Our study has received ethics approval from the University of Calgary Conjoint Ethics Board.