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Journal of Pain and Symptom Management Sep 2021Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care. (Review)
Review
CONTEXT
Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care.
OBJECTIVES
To summarize and evaluate existing palliative and end-of-life care interventions that aim to improve outcomes for racial and ethnic underrepresented populations in the United States.
METHODS
We conducted a systematic review of the literature in the English language from four databases through January 2020. Peer-reviewed studies that implemented interventions on palliative care, advance care planning, or end-of-life care were considered eligible. Data were extracted from 16 articles using pre-specified inclusion and exclusion criteria. Quality was appraised using the modified Downs and Black tool for assessing risk of bias in quantitative studies.
RESULTS
Five studies were randomized controlled trials, and the remainder were quasi-experiments. Six studies targeted Latino/Hispanic Americans, five African Americans, and five, Asian or Pacific Islander Americans. The two randomized control trials reviewed and rated "very high" quality, found educational interventions to have significant positive effects on advance care planning and advance directive completion and engagement for underrepresented racial or ethnic groups.
CONCLUSION
The effectiveness of advance care planning, end-of-life, and palliative care interventions in improving outcomes for underrepresented racial and ethnic populations remains uncertain. Randomized controlled trials and educational interventions indicate that interventions targeting underrepresented groups can have significant and positive effects on advance directives and/or advance care planning-related outcomes. More high-quality intervention studies that address racial and ethnic health disparities in palliative care are needed, particularly those that address systemic racism and other complex multilevel factors that influence disparities in health.
Topics: Advance Care Planning; Ethnicity; Hospice Care; Humans; Palliative Care; Terminal Care; United States
PubMed: 33984460
DOI: 10.1016/j.jpainsymman.2021.04.025 -
BMJ Supportive & Palliative Care Dec 2022Implantable cardioverter defibrillators (ICDs) are used to treat life-threatening cardiac arrhythmias and prevent sudden cardiac arrest. As recipients age they may...
BACKGROUND
Implantable cardioverter defibrillators (ICDs) are used to treat life-threatening cardiac arrhythmias and prevent sudden cardiac arrest. As recipients age they may develop greater risk of dying as a result of progressive multimorbidity rather than sudden cardiac death. Defibrillation shocks may prolong an uncomfortable dying process. Deactivation of the defibrillator would prevent this, yet is not always discussed and planned.
AIM
To systematically review published evidence on ICD deactivation discussions and make recommendations on when, how and who should facilitate effective and patient-centred deactivation discussions.
METHODS
Using standard systematic review methods, MEDLINE, EMBASE, CINAHL and PsycInfo were searched for studies published in the English language between 2010 and March 2021. Inclusion criteria were studies of adults (≥18 years) and including discussions on ICD deactivation and/or related communication. Included studies were independently reviewed, data extracted, quality assessed and data synthesised using a deductive approach.
RESULTS
Of the 8893 articles identified, 22 papers met the inclusion criteria. Deductive approach led to identification of five main themes: (1) timing of ICD deactivation discussions, (2) initiation of deactivation discussions, (3) advance directives, (4) barriers to discussions and (5) facilitators of discussions.
CONCLUSIONS
Despite available guidelines, conversations on device deactivation are not being undertaken consistently. Evidence suggests lack of professional awareness of guidelines and limited training in communication skills. To prevent distress and promote comfortable dying, there needs to be a proactive clinical and policy initiative in the education of both professionals and patients and their relatives about device deactivation.
Topics: Adult; Humans; Defibrillators, Implantable; Terminal Care; Advance Directives; Communication
PubMed: 33963003
DOI: 10.1136/bmjspcare-2021-002894 -
Der Anaesthesist Dec 2021An increasing number of patients reach the final stage of heart failure with heart transplantation as the only curative treatment. Mechanical circulatory support, such...
BACKGROUND
An increasing number of patients reach the final stage of heart failure with heart transplantation as the only curative treatment. Mechanical circulatory support, such as left ventricular assist devices (LVAD) are becoming increasingly more important at this stage of the disease. An LVAD improves the quality of life and prolongs the lifespan. The LVAD is used as a bridge to transplantation (BTT) for patients waiting for a donor heart or as a destination therapy (DT) with no transplantation intended; nevertheless, implantation is often associated with complications and the prognosis remains unfavorable in DT cases or after transition from BTT to DT. For patients the device may be a source of physical and psychological distress and can become a burden for families and caregivers. So far it remains unclear whether LVAD treatment is an indication for concurrent palliative care.
OBJECTIVE
The aim of this study was to collect the current data on the influence of palliative care in LVAD patients and to identify possible formats of palliative care in clinical practice.
MATERIAL AND METHODS
In May 2020, a systematic literature search was performed using the PICOS instrument in six different databases, i.e. PubMed, Cochrane library, Google scholar, Scopus, Web of Science and Journals@Ovid. We included quantitative and qualitative studies in English and German. Case reports, comments and pediatric studies were excluded.
RESULTS
A total of 21 publications from an initial number of 491 were included in this review. The integration of palliative care in the context of LVAD implantation increased the number of advance directives and documented surrogate decision makers. Studies found a positive influence of palliative care on the conditions and place of death, family involvement and symptom and pain management. Involvement in the decision-making process may improve patient selection for LVAD treatment and helps patients to make the decision on informed consent. Various formats for the integration of palliative medical concepts into LVAD treatment are reported. It is not clear when palliative care involvement should start; however, most articles support an early and continuous integration in the LVAD process. We have aggregated possible topics for palliative care consultations from a number of publications. Mutual teaching of both LVAD and palliative care teams is recommended. Integration of a dedicated LVAD palliative care specialist as part of the LVAD team can support care for patients as well as clinicians.
CONCLUSION
The role of palliative care in LVAD patients in clinical practice in the German-speaking area is not standardized. Early and continuous integration of palliative care into the course of LVAD treatment can improve the quality of care. Benefits for LVAD patients, caregivers and clinicians are described. For this purpose, recommendations as well as professional training for palliative care practitioners are useful. Further studies are needed to clarify the impact of palliative care in both DT and BTT patients.
Topics: Heart Transplantation; Heart-Assist Devices; Humans; Palliative Care; Quality of Life; Tissue Donors
PubMed: 33931802
DOI: 10.1007/s00101-021-00967-y -
The American Journal of Hospice &... Dec 2021Shared decision-making tools can facilitate advance care planning and goals of care conversations in non-cancer serious illness. More information on integrating these...
CONTEXT
Shared decision-making tools can facilitate advance care planning and goals of care conversations in non-cancer serious illness. More information on integrating these tools in ambulatory care could better support clinicians and patients/caregivers in these conversations.
OBJECTIVES
We evaluated effectiveness and implementation of integrating palliative care shared decision-making tools into ambulatory care for U.S. adults with serious, life-threatening illness and their caregivers.
DATA SOURCES
We searched PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials (2000 - May 2020) for quantitative controlled, qualitative, and mixed-methods studies.
REVIEW METHODS
Two reviewers screened articles, abstracted data, and independently assessed risk of bias or study quality. For quantitative trials, we graded strength of evidence for key outcomes: patient/caregiver satisfaction, depression or anxiety, concordance between patient preferences for care and care received, and healthcare utilization, including advance directive documentation.
RESULTS
We included 6 quantitative effectiveness randomized, controlled trials and 5 qualitative implementation studies across primary care and specialty populations. Shared decision-making tools all addressed goals-of-care communication or advance care planning. Palliative care shared decision-making tools may be effective for improving patient satisfaction with communication and advance directive documentation. We were unable to draw conclusions about concordance between preferences and care received. Patients and caregivers preferred advance care planning discussions grounded in patient and caregiver experiences with individualized timing.
CONCLUSIONS
For non-cancer serious illness, advance care planning shared decision-making tools may improve several outcomes. Future trials should evaluate concordance with care received and other health care utilization.
KEY MESSAGE
This mixed-methods review concludes that when integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools may improve patient satisfaction and advance directive documentation.
Topics: Adult; Advance Care Planning; Advance Directives; Caregivers; Chronic Disease; Humans; Palliative Care
PubMed: 33583195
DOI: 10.1177/1049909121995416 -
Journal of the American Medical... Feb 2021Health disparities are pervasive in nursing homes (NHs), but disparities in NH end-of-life (EOL) care (ie, hospital transfers, place of death, hospice use, palliative... (Review)
Review
OBJECTIVE
Health disparities are pervasive in nursing homes (NHs), but disparities in NH end-of-life (EOL) care (ie, hospital transfers, place of death, hospice use, palliative care, advance care planning) have not been comprehensively synthesized. We aim to identify differences in NH EOL care for racial/ethnic minority residents.
DESIGN
A systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and registered in PROSPERO (CRD42020181792).
SETTING AND PARTICIPANTS
Older NH residents who were terminally ill or approaching the EOL, including racial/ethnic minority NH residents.
METHODS
Three electronic databases were searched from 2010 to May 2020. Quality was assessed using the Newcastle-Ottawa Scale.
RESULTS
Eighteen articles were included, most (n = 16) were good quality and most (n = 15) used data through 2010. Studies varied in definitions and grouping of racial/ethnic minority residents. Four outcomes were identified: advance care planning (n = 10), hospice (n = 8), EOL hospitalizations (n = 6), and pain management (n = 1). Differences in EOL care were most apparent among NHs with higher proportions of Black residents. Racial/ethnic minority residents were less likely to complete advance directives. Although hospice use was mixed, Black residents were consistently less likely to use hospice before death. Hispanic and Black residents were more likely to experience an EOL hospitalization compared with non-Hispanic White residents. Racial/ethnic minority residents experienced worse pain and symptom management at the EOL; however, no articles studied specifics of palliative care (eg, spiritual care).
CONCLUSIONS AND IMPLICATIONS
This review identified NH health disparities in advance care planning, EOL hospitalizations, and pain management for racial/ethnic minority residents. Research is needed that uses recent data, reflective of current NH demographic trends. To help reduce EOL disparities, language services and cultural competency training for staff should be available in NHs with higher proportions of racial/ethnic minorities.
Topics: Ethnicity; Healthcare Disparities; Hospice Care; Humans; Minority Groups; Nursing Homes; Terminal Care
PubMed: 33428892
DOI: 10.1016/j.jamda.2020.12.005 -
Journal of the American Medical... Feb 2021The value of advance care planning (ACP) for patients with life-limiting illnesses is widely recognized but Asian health care professionals' (HCPs') perspectives on ACP... (Review)
Review
OBJECTIVE
The value of advance care planning (ACP) for patients with life-limiting illnesses is widely recognized but Asian health care professionals' (HCPs') perspectives on ACP have received little systematic attention. We aim to synthesize evidence regarding Asian HCPs' knowledge of, attitudes toward, and experiences with ACP.
DESIGN
Systematic review with narrative synthesis and stepwise thematic analysis.
SETTING AND PARTICIPANTS
HCPs in southern, eastern, and southeastern Asia.
METHODS
Studies from inception to September 2019 were identified from English-language searches of Embase, MEDLINE, Web of Science, and Google Scholar with reference-chaining and hand-searching. Two investigators independently screened and assessed the risk of bias in all original studies reporting HCPs' knowledge of, attitudes toward, and experiences with ACP, including their perspectives toward barriers and facilitators of ACP.
RESULTS
Fifty-one studies were included; 42 were quantitative, 43 had been conducted in high-income countries, and 36 were of good quality. Twenty-six studies operationalized ACP as the completion of an advance directive rather than a value-exploration process. Thirteen studies reported knowledge, 44 attitudes, 29 experiences, and 36 barriers and facilitators of ACP. Asian HCPs addressed the essential role of families in ACP. They acknowledge the importance of ACP but rarely engage the patient in it. They considered ACP difficult to initiate, partly because of their lack of knowledge and skills in ACP, personal uneasiness to conduct ACP, fear of conflicts with family members and their legal consequences, and the lack of a standard system for ACP. Most studies indicated HCPs' low engagement and late initiation of ACP.
CONCLUSIONS AND IMPLICATIONS
Despite acknowledging its importance, Asian HCPs felt that engaging in ACP is challenging. Capacity building for ACP in Asia should focus on culturally adapting ACP models concerning the essential role of the family in Asia, education for HCPs and the public, and providing institutional support for ACP.
Topics: Advance Care Planning; Advance Directives; Asia; Health Knowledge, Attitudes, Practice; Health Personnel; Humans
PubMed: 33421371
DOI: 10.1016/j.jamda.2020.12.018 -
The American Journal of Hospice &... Jun 2021African Americans (AA) experience health inequalities that affect their utilization of advance care planning (ACP) and hospice and palliative care at end of life (EOL)....
African Americans (AA) experience health inequalities that affect their utilization of advance care planning (ACP) and hospice and palliative care at end of life (EOL). Faith-based health promotion models may be applicable to ACP and EOL care literacy for this population. The purpose of this integrative review was to examine the literature highlighting participant responses to ACP and EOL care literacy initiatives in AA faith communities. An integrative literature review was conducted using the following databases: PubMed, CINAHL, Web of Science, and PsychINFO. Eight primary sources met inclusion criteria. Findings from these studies indicate that integration of AA religious beliefs and practices into ACP and EOL care educational programs may enhance the efficacy of these efforts in promoting ACP, advance directive completion, and hospice use. Building trust, creating community partnerships, and involving church leadership in ACP and EOL care literacy promotion efforts serve as important elements to inform future initiatives.
Topics: Advance Care Planning; Black or African American; Hospice Care; Humans; Literacy; Terminal Care
PubMed: 33297716
DOI: 10.1177/1049909120979164 -
Frontiers in Psychiatry 2020"Advance decision making" (ADM) refers to people planning for a future when they may lose the capacity to make decisions about treatment (decision making capacity for...
INTRODUCTION
"Advance decision making" (ADM) refers to people planning for a future when they may lose the capacity to make decisions about treatment (decision making capacity for treatment or DMC-T). This can occur in a variety of physical and mental health scenarios. Statutory provision for ADM is likely to be introduced to mental health legislation in England and Wales, which will support planning for mental health crises. Conceptually, it may have particular utility for people with Bipolar Affective Disorder (bipolar) due to the pattern of rapid loss and then recovery of DMC-T during episodes of illness. Furthermore, ADM is recommended by clinical experts in bipolar. However, the empirical evidence base for ADM in bipolar is unclear. Therefore, a systematic review is required to collate available evidence and define future research directions.
METHODS
A PRISMA concordant systematic review of empirical literature on the use of ADM in bipolar.
RESULTS
We found 13 eligible articles which reported on 11 studies. Of the eligible studies 2 used a mixed methods design, 8 were quantitative descriptive studies and 1 was a randomised controlled trial. Outcomes of included studies fell into 4 categories: Interest in ADM, type of ADM preferred, barriers to completing ADM and impact of ADM. The available evidence suggests that people with bipolar are interested in engaging with ADM which is supported, collaborative and allows them to state treatment requests and refusals.
CONCLUSIONS
Evidence in this area is limited. Clinicians should be aware that service users with bipolar are likely to value their support in creating ADM documents. In addition, it seems that people with bipolar may face fewer barriers and achieve greater success with ADM compared to those with other severe mental illnesses. Given the greater focus and likely demand for ADM following upcoming legal reform, further research is urgently needed to ensure available resources are most effectively targeted to achieve the best outcomes from ADM activities. This research should focus on clarifying: causal assumptions around ADM, the outcomes which are valued by key stakeholders, barriers to achieving these outcomes, stakeholder opinions on supporting 'self-binding' and the development and evaluation of models of ADM which are tailored for fluctuating DMC-T.
PubMed: 33192654
DOI: 10.3389/fpsyt.2020.538107 -
Applied Physiology, Nutrition, and... Oct 2020Strategies for dissemination (purposive distribution of a guideline to specific audiences) and implementation (actions to support the general public in meeting guideline...
Dissemination and implementation of national physical activity, sedentary behaviour, and/or sleep guidelines among community-dwelling adults aged 18 years and older: a systematic scoping review and suggestions for future reporting and research.
Strategies for dissemination (purposive distribution of a guideline to specific audiences) and implementation (actions to support the general public in meeting guideline recommendations/behavioural benchmarks) of national movement guidelines (physical activity (PA), sedentary behaviour, and sleep) have yet to be synthesized. The purpose of this systematic scoping review was to identify strategies for dissemination and implementation of national PA, sedentary behaviour, and/or sleep guidelines among community-dwelling adults (aged >18 years) and/or stakeholders in Canada and analogous countries. Five search approaches (e.g., published literature, grey literature, targeted web-based, custom Google, and content expert consultation) identified records (e.g., empirical studies, organizational reports, website pages, or guideline messages) that discussed and/or evaluated dissemination or implementation strategies for a prespecified list of guidelines. A modified strategy classification system was developed to chart the data. Forty-seven reports met inclusion criteria. Dissemination strategies ( = 42) were more frequently reported than implementation strategies ( = 24). Implementation strategies were more frequently evaluated ( = 13 vs. 7 dissemination strategies) and associated with positive outcomes. The 13 studies that evaluated strategies were at high or serious risk of bias. We identified limited information about the dissemination and implementation of national movement guidelines and identified strategies were rarely evaluated. Greater efforts are required to increase the impact of guidelines among the general public and stakeholders and to build the evidence base in this field. (Open Science Framework registration: https://osf.io/4tyw3.) An adapted movement guideline dissemination and implementation strategy classification framework is provided. Knowledge translation efforts should be documented and evaluated to advance science and practice in the movement guideline field.
Topics: Aging; Canada; Exercise; Guidelines as Topic; Health Knowledge, Attitudes, Practice; Humans; Independent Living; Information Dissemination; Movement; Sedentary Behavior; Sleep; Translational Research, Biomedical
PubMed: 33054340
DOI: 10.1139/apnm-2020-0251 -
The Gerontologist Feb 2022Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with... (Review)
Review
BACKGROUND AND OBJECTIVES
Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity.
RESEARCH DESIGN AND METHODS
Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized.
RESULTS
From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches.
DISCUSSION AND IMPLICATIONS
Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.
Topics: Advance Directives; Aged; Aged, 80 and over; Australia; Caregivers; Decision Making; Dementia; Humans; Proxy
PubMed: 32866239
DOI: 10.1093/geront/gnaa118