Substitute decision makers’ experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis

Dementia ◽  
2018 ◽  
Vol 19 (5) ◽  
pp. 1532-1559 ◽  
Author(s):  
Sarah Jane Cresp ◽  
Susan Fiona Lee ◽  
Cheryle Moss
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
End Of Life ◽  
Older Persons ◽  
Decision Makers ◽  
Research Quality ◽  
Advanced Dementia ◽  
Care Plans ◽  
Substitute Decision Makers

Background Substitute decision makers are important for people with advanced dementia, particularly at the end of life. Substitute decision makers report issues in providing support, and physical and psychological consequences from the role. However, there is no synthesised evidence about how substitute decision makers are affected by and experience making decisions for older persons diagnosed with dementia at end of life. Methodology: A protocol for a qualitative systematic review was developed. Seven articles met both inclusion and research quality criteria following a comprehensive search for published and unpublished studies (January 2007–2017, English language). Meta-synthesis was achieved through meta-aggregation of the results from included studies. Results Meta-aggregation of 20 themes into eight categories resulted in five synthesised findings. The findings were: ‘trust’; ‘guilt, mistrust and confusion’; ‘translating quality of life’; ‘negotiating families’; and ‘uncertainty and reactivity’. Trust in healthcare personnel positively affected substitute decision makers and supported their adaptability. Substitute decision makers experienced guilt, mistrust, and confusion as they encountered increased complexity in care and health interventions as social needs changed. Substitute decision makers experienced complexities and struggles as they interpreted quality of life and negotiated end of life treatment decisions. Substitute decision makers experienced practical needs to negotiate family as they fulfilled their support roles. Ambiguity in advance care plans, limited knowledge of dementia, end of life uncertainties, and communication issues reduced substitute decision makers’ proactivity. Implications: Being a substitute decision maker for people with advanced dementia at end of life is stressful. Health professionals need to be cognizant of substitute decision makers experiences and needs, and identify mechanisms to achieve support and education. The findings generate need for further investigation of interventions to meet the needs of substitute decision makers.

scholarly journals Older persons’ thoughts about death and dying and their experiences of care in end-of-life: a qualitative study

BMC Nursing ◽  
2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Johanna Tjernberg ◽  
Christina Bökberg
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Older Persons ◽  
Death And Dying ◽  
Living Condition ◽  
Care Needs ◽  
Healthy Persons

Abstract Background Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons’ perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life. Aim To explore thoughts about death and dying and experiences of care in end-of-life among older persons living in nursing homes. Methods This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4). Results The analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there. Conclusions This study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life. Trial registration NCT02708498 Date of registration 16 February 2016.

scholarly journals A group intervention to improve quality of life for people with advanced dementia living in care homes: the Namaste feasibility cluster RCT

2020 ◽  
Vol 24 (6) ◽  
pp. 1-140 ◽  
Author(s):  
Katherine Froggatt ◽  
Ashley Best ◽  
Frances Bunn ◽  
Girvan Burnside ◽  
Joanna Coast ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nursing Homes ◽  
End Of Life ◽  
Controlled Trial ◽  
Realist Review ◽  
Cluster Randomised Controlled Trial ◽  
Life Care ◽  
Advanced Dementia ◽  
Informal Carers

Background People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision. Objectives To establish the feasibility and acceptability to staff and family of conducting a cluster randomised controlled trial of the Namaste Care intervention for people with advanced dementia in nursing homes. Design The study had three phases: (1) realist review and (2) intervention refinement to inform the design of (3) a feasibility cluster randomised controlled trial with a process evaluation and economic analysis. Clusters (nursing homes) were randomised in a 3 : 1 ratio to intervention or control (usual care). The nature of the intervention meant that blinding was not possible. Setting Nursing homes in England providing care for people with dementia. Participants Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff. Intervention Namaste Care is a complex group intervention that provides structured personalised care in a dedicated space, focusing on enhancements to the physical environment, comfort management and sensory engagement. Main outcome measures The two contender primary outcome measures were Comfort Assessment in Dying – End of Life Care in Dementia for quality of dying (dementia) and Quality of Life in Late Stage Dementia for quality of life. The secondary outcomes were as follows: person with dementia, sleep/activity (actigraphy), neuropsychiatric symptoms, agitation and pain; informal carers, satisfaction with care at the end of life; staff members, person-centred care assessment, satisfaction with care at the end of life and readiness for change; and other data – health economic outcomes, medication/service use and intervention activity. Results Phase 1 (realist review; 86 papers) identified that a key intervention component was the activities enabling the development of moments of connection. In phase 2, refinement of the intervention enabled the production of a user-friendly 16-page A4 booklet. In phase 3, eight nursing homes were recruited. Two homes withdrew before the intervention commenced; four intervention and two control homes completed the study. Residents with advanced dementia (n = 32) were recruited in intervention (n = 18) and control (n = 14) homes. Informal carers (total, n = 12: intervention, n = 5; control, n = 7) and 97 staff from eight sites (intervention, n = 75; control, n = 22) were recruited over a 6-month period. Recruitment is feasible. Completion rates of the primary outcome questionnaires were high at baseline (100%) and at 4 weeks (96.8%). The Quality of Life in Late Stage Dementia was more responsive to change over 24 weeks. Even where economic data were missing, these could be collected in a full trial. The intervention was acceptable; the dose varied depending on the staffing and physical environment of each care home. Staff and informal carers reported changes for the person with dementia in two ways: increased social engagement and greater calm. No adverse events related to the intervention were reported. Conclusions A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification. Future work In a full trial, consideration is needed of the appropriate outcome measure that is sensitive to different participant responses, and of clear implementation principles for this person-centred intervention in a nursing home context. Trial registration Current Controlled Trials ISRCTN14948133. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 6. See the NIHR Journals Library website for further project information.

scholarly journals Acupuncture for patients with chronic pruritus: protocol of a systematic review and meta-analysis

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e034784
Author(s):  
Leixiao Zhang ◽  
Yanli Deng ◽  
Junpeng Yao ◽  
Xianjun Xiao ◽  
Siyi Yu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Quality Index ◽  
Biomedical Literature ◽  
World Health ◽  
Research Quality ◽  
Cochrane Library ◽  
Quality Of Life Scale ◽  
Chronic Pruritus

IntroductionChronic pruritus (CP) frequently occurs in many skin and systemic diseases, and adversely affects quality of life. This systematic review aims to evaluate treatment effects of acupuncture on CP.Methods and analysisAn electronic and manual search will be conducted for all acupuncture treatments for CP, from the inception date of predefined database up to 28 February 2020. Databases include PubMed, Embase, Springer, Web of Science, the Cochrane Library, the World Health Organization International Clinical Trial Registration Platform, the Chinese Medicine Database, the China National Knowledge Infrastructure, the Chinese Biomedical Literature Database, the China Science Journal Database and the Wanfang Database. Other sources, including existing systematic reviews, conference proceedings and reference lists of identified publications will also be searched. Additionally, any clinical randomised controlled trials related to acupuncture treatment for CP, regardless of the publication status and language limitations, will be included. Study selection, data extraction and research quality assessments will be conducted independently by two researchers. The primary outcome measures include the Visual Analogue Scale, Urdu 5D-Itch Scale or other validated scales implemented after at least 2 weeks of treatment. Secondary outcomes include the effective rate, Quality of Life Scale (eg, the EQ-5D third level, the Dermatology Life Quality Index, etc.), Pittsburgh Sleep Quality Index, recurrence rate during the follow-up period and adverse events. If possible, meta-analyses will be performed using RevMan V.5.3 statistical software; otherwise, a descriptive analysis or subgroup analysis will be conducted. The results will be presented as the risk ratio of the binary data and the mean difference (MD) or standardised MD of the continuous data.Ethics and disseminationThis systematic review protocol does not require formal ethical approval because the data are not personalised. It will be published in peer-reviewed journals and presented at international academic conferences.PROSPERO registration numberCRD42019136727.

scholarly journals Influence of health interventions on quality of life in seriously ill children at the end of life: a systematic review protocol

2019 ◽  
Vol 8 (1) ◽  
Author(s):  
Veerle E. Piette ◽  
Joachim Cohen ◽  
Luc Deliens ◽  
Nele Pauwels ◽  
Jutte van der Werff ten Bosch ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
End Of Life ◽  
Health Interventions ◽  
Systematic Review Protocol ◽  
Review Protocol ◽  
Seriously Ill

A systematic review of the effectiveness of individualised survivorship care plans on quality of life of adult female breast cancer survivors.

2012 ◽  
Vol 10 (Supplement) ◽  
pp. 1-15 ◽  
Author(s):  
Teri A. Martin ◽  
Rose M. Moran-Kelly ◽  
Joanna G. Powe ◽  
Lucy M. Roberts ◽  
Sandra N. Farrell ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Systematic Review ◽  
Breast Cancer Survivors ◽  
Female Breast Cancer ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans ◽  
Female Breast

Applying futility in psychiatry: a concept whose time has come

2020 ◽  
pp. medethics-2020-106654
Author(s):  
Sarah Levitt ◽  
Daniel Z Buchman
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Mental Illness ◽  
Terminal Illness ◽  
Psychiatric Illness ◽  
Decision Makers ◽  
Benefit Ratio ◽  
Persistent Mental Illness ◽  
Substitute Decision Makers

Since its introduction in the 1980s, futility as a concept has held contested meaning and applications throughout medicine. There has been little discussion within the psychiatric literature about the use of futility in the care of individuals experiencing severe and persistent mental illness (SPMI), despite some tacit acceptance that futility may apply in certain cases of psychiatric illness. In this paper, we explore the literature surrounding futility and argue that its connotation within medicine is to describe situations where patients (or their substitute decision-makers) believe that interventions will almost certainly provide no meaningful benefit. We then provide two arguments in support of the use of futility within the care of individuals experiencing SPMI: that some SPMI can be considered a terminal illness, and that the risk-benefit ratio is a dynamic entity such that futility can help describe what Gillett calls the ‘risk of unacceptable badness’ when it comes to considering how an intervention might impact a patient’s quality of life. We posit that capacity should not pose an obstacle to declaring futility when caring for individuals experiencing SPMI and explain how futility is not antithetical to recovery in mental health. Finally, we describe how using futility within psychiatric practice can allow for a reorientation of care by signalling the need to shift to a palliative approach.

Health and Well-Being in the Year before Death: The Association with Quality of Life and Care at the End-of-Life

2020 ◽  
Vol 32 (10) ◽  
pp. 1475-1485
Author(s):  
Hyo Jung Lee ◽  
Brent J. Small ◽  
William E. Haley
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
Latent Class ◽  
Well Being ◽  
Care Plans ◽  
Advance Care ◽  
Using Data ◽  
Health And Well Being

Objective: We examined whether older adults’ health and well-being during their final year of life predicts end-of-life (EOL) quality of life (QOL) and quality of care (QOC). Methods: Using data from deceased participants ( n = 1125) in the 2011–2015 National Health and Aging Trends Study, we performed latent class analysis to identify profiles of health and well-being, and we examined the association between these classes and EOL QOL and QOC. Results: Four classes were identified: healthy/happy (20%), frail/happy (37%), cognitively impaired/moderately distressed (27%), and highly impaired/highly distressed (16%). Persons in the highly impaired/highly distressed class showed a poorer QOL at the EOL, whereas those in the healthy/happy class reported a lower level of QOC at the EOL. Discussion: The benefits of maintaining health and well-being often carry forward to EOL. Older adults with high impairment and distress merit greater attention such as assuring care and advance care plans.

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