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JBI Evidence Synthesis Feb 2024The objective of this review was to critically appraise and synthesize qualitative evidence of older persons' perceptions and experiences of community palliative care.
OBJECTIVE
The objective of this review was to critically appraise and synthesize qualitative evidence of older persons' perceptions and experiences of community palliative care.
INTRODUCTION
Palliative care focuses on the relief of symptoms and suffering at the end of life and is needed by approximately 56.8 million people globally each year. An increase in aging populations coupled with the desire to die at home highlights the growing demand for community palliative care. This review provides an understanding of the unique experiences and perceptions of older adults receiving community palliative care.
INCLUSION CRITERIA
This review appraised qualitative studies examining the perceptions and experiences of older adults (65 years or older) receiving community palliative care. Eligible research designs included, but were not limited to, ethnography, grounded theory, and phenomenology.
METHODS
A search of the literature across CINAHL (EBSCOhost), MEDLINE (Ovid), Embase (Ovid SP), Web of Science Core Collection, and Scopus databases was undertaken in July 2021 and updated November 1, 2022. Included studies were published in English between 2000 and 2022. The search for unpublished studies included ProQuest Dissertations and Theses. Study selection, quality appraisal, and data extraction were performed by 2 independent reviewers. Findings from the included studies were pooled using the JBI meta-aggregation method.
RESULTS
Nine qualitative studies involving 98 participants were included in this review. A total of 100 findings were extracted and grouped into 14 categories. Four synthesized findings evolved from these categories: i) Older persons receiving palliative care in the community recognize that their life is changed and come to terms with their situation, redefining what is normal, appreciating life lived, and celebrating the life they still have by living one day at a time; ii) Older persons receiving palliative care in the community experience isolation and loneliness exacerbated by their detachment and withdrawal from and by others; iii) Older persons receiving palliative care in the community face major challenges managing prevailing symptoms, medication management difficulties, and costs of medical care and equipment; and iv) Older persons want to receive palliative care and to die at home; however, this requires both informal and formal supports, including continuity of care, good communication, and positive relationships with health care providers.
CONCLUSIONS
Experiences and perceptions of community palliative care vary among older adults. These are influenced by the individual's expectations and needs, available services, and cost. Older adults' input into decision-making about their care is fundamental to their needs being met and is contingent on effective communication between the patient, family, and staff across services. Policy that advocates for trained palliative care staff to provide care is necessary to optimize care outcomes, while collaboration between staff and services is critical to enabling holistic care, managing symptoms, and providing compassionate care and support.
Topics: Humans; Aged; Aged, 80 and over; Palliative Care; Qualitative Research; Anthropology, Cultural; Health Personnel; Aging
PubMed: 37930393
DOI: 10.11124/JBIES-22-00353 -
EClinicalMedicine May 2024Aggressive care near patients' end-of-life (EOL) entails limited therapeutic values, high costs, and compromised quality of life (QoL). In this study, we aimed to...
BACKGROUND
Aggressive care near patients' end-of-life (EOL) entails limited therapeutic values, high costs, and compromised quality of life (QoL). In this study, we aimed to estimate the global prevalence of aggressive care in patients with cancer and explore potential subgroup differences.
METHODS
We searched PubMed, Embase, and the Cochrane Library from database inception to Feb 16, 2024. Eligible studies reported the prevalence of aggressive EOL care using at least one quantifiable measure. Random-effects models were used to derive the pooled prevalence and subgroup analyses were performed to investigate differences in the prevalence of aggressive care across regions, the country's level of economic development, tumor types, ages, and sample sizes. This review is registered with PROSPERO, number CRD42023467839.
FINDINGS
A total of 129 studies were included in this systematic review, of which 118 (91.5%) were from high-income countries. Studies were mostly conducted in the Americas (60, 46.5%), Europe (34, 26.4%), and Western Pacific (31, 24.0%). Measures of aggressive care were inconsistent across studies, with the most commonly used measure being the use of chemotherapy in the last 14 days of life (DOLs) (n = 87, 67.4%) and intensive care unit (ICU) stay in the last 30 DOLs (n = 87, 67.4%). The prevalence of the five claims-based measures of aggressive care, i.e., chemotherapy in the last 14 DOLs, ICU stay in the last 30 DOLs, repeated hospital admission in the last 30 DOLs, repeated emergency room (ER) visit in the last 30 DOLs, and hospice care <3 days before death were 11.6% (95% CI, 9.8%-13.4%), 14.4% (95% CI, 11.8%-17.0%), 17.9% (95% CI, 14.4%-21.4%), 14.8% (95% CI, 12.0%-17.6%), and 14.4% (95% CI, 11.2%-17.6%), respectively. Regional differences were statistically significant in the prevalence of ICU stay and repeated hospital admission in the last 30 DOLs (p < 0.01; p = 0.03). Patients with hematologic malignancies were more likely to receive aggressive care than those with solid tumors, as seen in their higher rates of chemotherapy in the last 14 DOLs (21.7% versus 11.6%; p = 0.03), ICU stay in the last 30 DOLs (25.5% versus 10.8%; p < 0.01), and hospice care <3 days before death (26.7% versus 14.2%; p < 0.01). In addition, the prevalence of chemotherapy in the last 14 DOLs (26.2%; p < 0.01) and repeated hospital admission in the last 30 DOLs (31.4%; p < 0.01) were highest among pediatric patients with cancer.
INTERPRETATION
This meta-analysis found that aggressive EOL care was common in patients with cancer, regardless of the definition used, and varied by regions and populations. It is necessary to be aware of the global burden of aggressive care for patients with cancer near their EOL and take prompt action to address it.
FUNDING
National Natural Science Foundation of China (Grant No. 72274004).
PubMed: 38549585
DOI: 10.1016/j.eclinm.2024.102561 -
Archives of Gerontology and Geriatrics Jan 2024As their health declines, many older adults require additional care and move to residential aged care facilities. Despite efforts to reduce it, variation persists in... (Review)
Review
BACKGROUND
As their health declines, many older adults require additional care and move to residential aged care facilities. Despite efforts to reduce it, variation persists in care quality at the end-of-life (EOL) between facilities. Indicators to monitor care variation are therefore required. This rapid systematic review aims to identify population-level indicators of the quality of end-of-life-care (EOLC) for residents of aged care.
METHOD
A rapid systematic review of five databases (MEDLINE, Embase, CINAHL, PsycINFO, Scopus) for studies that reported on the development, assessment or validation of at least one measure of EOLC quality for residents living in an aged care setting from 1 January 2000 to 18 April 2023 was conducted. Abstracts and full-texts were screened by two reviewers and each indicator critically appraised. Key characteristics of each study were extracted.
RESULTS
From seven studies, 106 EOLC quality indicators (75 of which were unique) for aged care residents were identified. Five studies specifically identified EOLC indicators for older residents with cognitive impairment. The EOLC quality indicators were diverse in nature. There were 31 EOLC quality indicators (22 unique indicators) focused on the structure and process of care provided and 51 (38 unique indicators) identified physical and psychological aspects of care. Twenty-three EOLC quality indicators (14 unique indicators) related to care of the imminently dying patient.
CONCLUSION
A common suite of population-level EOLC indicators that are reflective of care quality, are clinically appropriate, and important to residents and their families should be identified to monitor EOLC quality within and across jurisdictions.
Topics: Aged; Humans; Quality Indicators, Health Care; Terminal Care; Quality of Health Care; Homes for the Aged; Death
PubMed: 37535984
DOI: 10.1016/j.archger.2023.105130 -
Farmacia Hospitalaria : Organo Oficial... 2024Patients with life-limiting illnesses are prone to unnecessary polypharmacy. Deprescribing tools may contribute to minimizing negative outcomes. Thus, the aims of the... (Review)
Review
OBJECTIVES
Patients with life-limiting illnesses are prone to unnecessary polypharmacy. Deprescribing tools may contribute to minimizing negative outcomes. Thus, the aims of the study were to identify validated instruments for deprescribing inappropriate medications for patients with palliative care needs and to assess the impact on clinical, humanistic, and economic outcomes.
METHODS
A systematic review was conducted in LILACS, PUBMED, EMBASE, COCHRANE, and WEB OF SCIENCE databases (until May 2021). A manual search was performed in the references of enrolled articles. The screening, eligibility, extraction, and bias risk assessment were carried out by two independent researchers. Experimental and observational studies were eligible for inclusion.
RESULTS
Out of the 5,791 studies retrieved, after excluding duplicates (n = 1,050), conducting title/abstract screening (n = 4,741), and full reading (n = 41), only one study met the inclusion criteria. In this included study, a randomized controlled trial was conducted, which showed a high level of bias risk overall. Adults 75 years or older (n = 130) with limited life expectancy and polypharmacy were allocated to two groups [intervention arm (deprescribing); and control arm (usual care)]. Deprescribing was performed with the aid of the STOPPFrail tool. The mean number of inappropriate medications and monthly medication costs were significantly lower in the intervention arm. No statistically significant differences were found in terms of unscheduled hospital presentations, falls, fractures, mortality, and quality of life.
CONCLUSIONS
Despite the availability of several instruments to support deprescribing in patients with palliative care needs, only one of them has undergone validation and robust assessment for effectiveness in clinical practice. The STOPPFrail tool appears to reduce the number of inappropriate medications for older people with limited life expectancy (and probably palliative care needs) and decrease the monthly costs of pharmacotherapy. Nevertheless, the impact on patient safety and humanistic outcomes remain unclear.
Topics: Humans; Aged; Deprescriptions; Inappropriate Prescribing; Palliative Care; Quality of Life; Polypharmacy; Randomized Controlled Trials as Topic
PubMed: 38016841
DOI: 10.1016/j.farma.2023.08.010 -
European Respiratory Review : An... Sep 2023Recent decades have seen an increase in children receiving long-term ventilation. To ensure that long-term ventilation decisions incorporate the perspectives of... (Review)
Review
INTRODUCTION
Recent decades have seen an increase in children receiving long-term ventilation. To ensure that long-term ventilation decisions incorporate the perspectives of stakeholders, it is vital that empirical evidence is gathered to substantiate frameworks and guidance on shared decision-making for long-term ventilation. This systematic review and qualitative evidence synthesis aimed to clarify what shared decision-making constitutes in relation to long-term ventilation initiation for children and young people (<21 years).
METHODS
A systematic review of qualitative research was undertaken. Searches were conducted in MEDLINE, Embase, CINAHL, PsycINFO and Web of Science.
RESULTS
Findings from 13 studies were included representative of 363 caregivers and 143 healthcare professional experiences. Components that support shared decision-making included acknowledging the unique positionality of caregivers and ensuring caregivers were informed about the implications of long-term ventilation. Beneficial qualities of engagement between stakeholders included honest, clear and timely dialogue using lay, tactful and sensitive language.
CONCLUSION
Our findings clarify components and approaches supportive of shared decision-making in discussions about long-term ventilation. This review therefore provides a valuable resource to implement shared decision-making practices in the context of long-term ventilation decisions for children and young people.
Topics: Child; Humans; Adolescent; Respiration; Health Personnel
PubMed: 37611948
DOI: 10.1183/16000617.0098-2023 -
International Journal of Behavioral... Oct 2023People with advanced cancer experience psychological distress due to physical symptoms, functional decline, and a limited prognosis. Difficult thoughts, feelings, and... (Review)
Review
BACKGROUND
People with advanced cancer experience psychological distress due to physical symptoms, functional decline, and a limited prognosis. Difficult thoughts, feelings, and emotions may exacerbate distress and lead to avoidance of these experiences which is sometimes referred to as experiential avoidance (EA). Advanced cancer patients may be more likely to engage in EA especially when no obvious solutions to their problems exist. This study aims to examine the terms used to describe EA, the processes that might indicate EA, associations between EA and psychological distress, and to understand why individuals might engage in EA.
METHODS
A mixed-methods review. Literature search of Medline, Embase, Psych INFO, and CINAHL 1980-October 2019.
INCLUSION
adults ≥ 18 years; advanced cancer not amenable to cure.
EXCLUSION
no measures of EA or psychological distress. Risk of bias and study quality assessed. Evidence of statistical techniques collected. Themes coded, grouped, and developed based on meaning.
RESULTS
Nineteen studies identified, 13 quantitative studies and 6 qualitative. The quantitative of which 6 compared early-stage cancers with advanced cancers and examined subscales of EA alongside mood, quality of life, and psychological distress. EA covers a range or terms of which 'avoidant coping' is the commonest. EA is manifest as cognitive, behavioural, and emotional avoidance. A thematic synthesis suggests the function of EA is to protect people from distress, and from confronting or expressing difficult emotions by avoiding communication about cancer, controlling negative information, and maintaining normality and hope and optimism.
CONCLUSIONS
EA may be beneficial in the short term to alleviate distress, but in the longer term, it can impair function and limit engagement in life. Greater clinical awareness of the complexity of EA behaviours is needed. Clinicians and researchers should define EA precisely and be aware of the function it may serve in the short and longer term. Future research studies may consider using specific measures of EA as a primary outcome, to assess the impact of psychological interventions such as ACT.
Topics: Adult; Humans; Stress, Psychological; Quality of Life; Emotions; Affect; Neoplasms
PubMed: 36284042
DOI: 10.1007/s12529-022-10131-4 -
Palliative Medicine Jan 2024Given the increasing demand for palliative and end-of-life care, along with the introduction of costly new treatments, there is a pressing need for robust evidence on... (Review)
Review
BACKGROUND
Given the increasing demand for palliative and end-of-life care, along with the introduction of costly new treatments, there is a pressing need for robust evidence on value. However, comprehensive guidance is missing on methods for conducting economic evaluations in this field.
AIM
To identify and summarise existing information on methodological challenges and potential solutions/recommendations for economic evaluations of palliative and end-of-life care.
DESIGN
We conducted a systematic review of publications on methodological considerations for economic evaluations of adult palliative and end-of-life care as per our PROSPERO protocol CRD42020148160. Following initial searches, we conducted a two-stage screening process and quality appraisal. Information was thematically synthesised, coded, categorised into common themes and aligned with the items specified in the Consolidated Health Economic Evaluation Reporting Standards statement.
DATA SOURCES
The databases Medline, Embase, HTADatabase, NHSEED and grey literature were searched between 1 January 1999 and 5 June 2023.
RESULTS
Out of the initial 6502 studies, 81 were deemed eligible. Identified challenges could be grouped into nine themes: ambiguous and inaccurate patient identification, restricted generalisability due to poor geographic transferability of evidence, narrow costing perspective applied, difficulties defining comparators, consequences of applied time horizon, ambiguity in the selection of outcomes, challenged outcome measurement, non-standardised measurement and valuation of costs as well as challenges regarding a reliable preference-based outcome valuation.
CONCLUSION
Our review offers a comprehensive context-specific overview of methodological considerations for economic evaluations of palliative and end-of-life care. It also identifies the main knowledge gaps to help prioritise future methodological research specifically for this field.
Topics: Adult; Humans; Cost-Benefit Analysis; Terminal Care; Research Design
PubMed: 38142280
DOI: 10.1177/02692163231214124 -
BMC Palliative Care Nov 2023Palliative care practitioners are increasingly caring for patients and families from diverse cultural backgrounds. There is growing awareness of the influence of culture...
BACKGROUND
Palliative care practitioners are increasingly caring for patients and families from diverse cultural backgrounds. There is growing awareness of the influence of culture on many aspects of care in the palliative phase of an illness. However, disparities have been noted in the provision of palliative care to patients from culturally diverse backgrounds and challenges have been reported in meeting their needs and those of their families.
METHOD
A qualitative systematic review of research papers identified through searching four databases. Papers were screened against inclusion criteria within the timeframe of January 2012 to March 2022. Data was extraction from all included studies and methodological quality assessed utilising the Critical Appraisal Skills Programme Tool. Thematic analysis followed Braun and Clarke's framework and the review is reported in line with PRISMA guidelines.
FINDINGS
The search yielded 1954 results of which 26 were included for appraisal and review. Four themes were identified: communication and connection, the role of the family in death and dying, the role of education in addressing uncertainty, and institutional and societal factors. The findings highlighted challenges of communication and a fear of acting in a culturally insensitive way, the pivotal role of the family, the need for an individualised approach to care, the universality of needs when approaching end of life and the need for education of practitioners.
CONCLUSION
These findings suggest that healthcare practitioners draw on their existing skills to adapt their practice to meet the needs of patients from culturally diverse backgrounds. However, results also indicate a need for further education and identification of educational approaches best suited to supporting healthcare professionals in practice.
Topics: Humans; Palliative Care; Qualitative Research; Hospice and Palliative Care Nursing; Communication; Delivery of Health Care
PubMed: 37978500
DOI: 10.1186/s12904-023-01285-3 -
BMJ Open Dec 2023This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet... (Review)
Review
What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review.
OBJECTIVES
This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain.
DESIGN
Scoping review, reported according to the Preferred Reporting Items for Systematic Reviews, Meta-Analyses extension for Scoping Reviews reporting guideline.
DATA SOURCES
PubMed, Embase, Emcare, Web of Science, COCHRANE Library, PsycINFO, Academic Search Premier and Cinahl searched up to 23 July 2023.
ELIGIBILITY CRITERIA
Studies reporting on family involvement in interventions for nursing home residents with dementia were included.
DATA EXTRACTION AND SYNTHESIS
Two researchers independently extracted the data, followed by a content analysis.
RESULTS
Of the 1486 records screened, 20 studies were included. Family caregivers were involved in interventions aimed at planning care, life review (eg, documentation of life experiences of their relative), and selecting activities for their relative. Family caregivers preferred an active role in developing optimal care for their relative. Drivers of success and barriers to family involvement centred around three themes: (1) communication between all involved; (2) prerequisites (organisational and other conditions) and (3) personal circumstances (family's coping and skills).
CONCLUSION
Best practices for involving family caregivers in interventions aimed at addressing responsive behaviour in residents with dementia concerned those interventions in which family caregivers were given an important role in managing responsive behaviour. This means that, in order to achieve an active role of family caregivers in the whole care process, their needs must be taken into account.
TRIAL REGISTRATION NUMBER
The protocol of the review was regisered at OSF; https://osf.io/twcfq.
Topics: Humans; Caregivers; Dementia; Nursing Homes; Communication
PubMed: 38149428
DOI: 10.1136/bmjopen-2023-071804 -
Journal of Pain and Symptom Management Jan 2024Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of... (Review)
Review
BACKGROUND
Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of strategies to overcome factors that impede access for patients with palliative care needs.
AIM
To review the current evidence on barriers that impair, delay, or prohibit access to palliative care for adult hospital inpatients.
DESIGN
A mixed methods systematic review was conducted using an integrated convergent approach and thematic synthesis (PROSPERO ID: CRD42021279477).
DATA SOURCES
The Cochrane Library, MEDLINE, CINAHL, and PsycINFO were searched from 10/2003 to 12/2020. Studies with evidence of barriers for inpatients to access existing palliative care services were eligible and reviewed.
RESULTS
After an initial screening of 3,359 records and 555 full-texts, 79 studies were included. Thematic synthesis yielded 149 access-related phenomena in 6 main categories: 1) Sociodemographic characteristics, 2) Health-related characteristics, 3) Individual beliefs and attitudes, 4) Interindividual cooperation and support, 5) Availability and allocation of resources, and 6) Emotional and prognostic challenges. While evidence was inconclusive for most socio-demographic factors, the following barriers emerged: having a noncancer condition or a low symptom burden, the focus on cure in hospitals, nonacceptance of terminal prognosis, negative perceptions of palliative care, misleading communication and conflicting care preferences, lack of resources, poor coordination, insufficient expertise, and clinicians' emotional discomfort and difficult prognostication.
CONCLUSION
Hospital inpatients face multiple barriers to accessing palliative care. Strategies to address these barriers need to take into account their multidimensionality and long-standing persistence.
Topics: Adult; Humans; Communication; Hospitals; Inpatients; Palliative Care; Health Services Accessibility
PubMed: 37717708
DOI: 10.1016/j.jpainsymman.2023.09.012