scholarly journals Palliative care for homeless and vulnerably housed people: scoping review and thematic synthesis

2021 ◽  
pp. bmjspcare-2021-003020
Author(s):  
Richard James ◽  
Kate Flemming ◽  
Melanie Hodson ◽  
Tammy Oxley
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Service Providers ◽  
Grey Literature ◽  
Evidence Base ◽  
Life Care ◽  
Thematic Synthesis ◽  
Wide Range

IntroductionPeople who are homeless or vulnerably housed are subject to disproportionately high risks of physical and mental illness and are further disadvantaged by difficulties in access to services. Research has been conducted examining a wide range of issues in relation to end-of-life care for homeless and vulnerably housed people, however, a contemporary scoping review of this literature is lacking.ObjectivesTo understand the provision of palliative care for people who are homeless or vulnerably housed from the perspective of, and for the benefit of, all those who should be involved in its provision.DesignScoping review with thematic synthesis of qualitative and quantitative literature.Data sourcesMEDLINE, Embase, PsycINFO, Social Policy and Practice and CINAHL databases were searched, from inception to May 2020. Citation chasing and manual searching of grey literature were also employed.ResultsSixty-four studies, involving 2117 homeless and vulnerably housed people were included, with wide variation in methodology, population and perspective. The thematic synthesis identified three themes around: experiences, beliefs and wishes; relationships; and end-of-life care.ConclusionDiscussion highlighted gaps in the evidence base, especially around people experiencing different types of homelessness. Existing evidence advocates for service providers to offer needs-based and non-judgemental care, for organisations to use existing assets in co-producing services, and for researchers to address gaps in the evidence base, and to work with providers in transforming existing knowledge into evaluable action.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

scholarly journals Racial and Ethnic Disparities in Palliative Care: A Systematic Scoping Review

2018 ◽  
Vol 99 (4) ◽  
pp. 301-316 ◽  
Author(s):  
Daniel S. Gardner ◽  
Meredith Doherty ◽  
Gleneara Bates ◽  
Aliza Koplow ◽  
Sarah Johnson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Ethnic Disparities ◽  
Racial And Ethnic Disparities ◽  
Life Care ◽  
Search Terms ◽  
Communities Of Color ◽  
Social Environmental

Despite the advances and spread of palliative care programs, communities of color remain significantly underserved. Although these disparities are widely known, there is a marked lack of empirical evidence. The authors conducted a systematic scoping review that synthesized the literature since 2000 about racial and ethnic disparities in palliative and end-of-life care. We searched PubMed, Medline, SocIndex, CINAHL, Social Work Abstracts, and PsycINFO, using search terms including palliative care or end-of-life care, disparities or barriers or utilization, and race or ethnicity or African American or Hispanic. Findings lend support to extant literature that social-environmental barriers and disparities distinctly affect access to care for these populations. The review expands upon understanding of how social determinants drive disparities in palliative and end-of-life care and suggests implications for practice, policy, and research in promoting health equity in serious illness.

Outpatient palliative care at a tertiary cancer center: Perceptions, pathways, and pitfalls.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 28-28
Author(s):  
Kavitha Ramchandran ◽  
Sandy Trieu ◽  
Stephanie Harman ◽  
Judy Passaglia ◽  
Janet Rodriguez ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Cancer Center ◽  
Care Planning ◽  
Life Care ◽  
Code Status ◽  
Wide Range ◽  
Advance Care

28 Background: To describe an outpatient palliative care program at a quaternary cancer center- Stanford Cancer Institute. Outpatient palliative care (PC) programs are still in their nascency. Best practices are still being developed and key performance metrics are being delineated. This is a description of Stanford Cancer Institute outpatient PC program. Methods: Observational study of the first six months of encounters to the outpatient PC program. Description of potential barriers to launch and growth, as well as description of resources required for continued success. Data evaluated included program volume, referral patterns, advance care planning, symptom assessment and team structure as collected by the clinical team. Results: Initial barriers to program initiation included lack of funding and infrastructure. Additional barriers included coordination between teams, flow of care (patients late for next appointments), and cultural perceptions of palliative care as equal to end of life care. There are 32 referring practitioners to the program. Over the first six months the outpatient PC program has seen growth with volume increasing from 10 consults per month to 26 consults per month for a total of 60 patients. At the time of initial consult, 11 of the 60 patients seen had an advance directive. Only 1 patient had a physician order for life sustaining treatment (POLST). Code status was documented in 21 of the 60 patients. Conclusions: Our program had multiple barriers to launch: perceptions that palliative care equaled end of life care, lack of infrastructure and funding, and difficulty with coordination between teams. With administrative support the program secured funding, developed infrastructure with the assistance of IT, Cancer Center administration, and Care Coordination. Consults now come from a wide range of providers. Based on preliminary data indicating a very low percentage of completion of these tasks by patients on initial consult there is need for outpatient palliative care for advance care planning. Future growth will include continued penetration of the cancer center, increasing volume of consults, and additional assessments of patient satisfaction, symptom improvement, and hospital utilization.

scholarly journals Improving Care Experiences for Patients and Caregivers at End of Life: A Systematic Review

2020 ◽  
Vol 38 (1) ◽  
pp. 84-93
Author(s):  
Denise D. Quigley ◽  
Sara G. McCleskey
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Systematic Reviews ◽  
End Of Life Care ◽  
Hospice Care ◽  
Grey Literature ◽  
Research Approach ◽  
Spiritual Support ◽  
Life Care ◽  
Care Plans

Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences. Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews. Setting: Palliative and hospice care. Population: Full-text abstraction of 84 articles, identifying 16 articles. Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report). Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results. Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.

scholarly journals UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey

2016 ◽  
Vol 8 (4) ◽  
pp. 424-427 ◽  
Author(s):  
Sarah Amador ◽  
Claire Goodman ◽  
Louise Robinson ◽  
Elizabeth L Sampson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Online Survey ◽  
Symptom Control ◽  
Good Practice ◽  
Dementia Care ◽  
National Council ◽  
Life Care ◽  
Wide Range

BackgroundPeople living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care.MethodsAn online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics.Results15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision.ConclusionsRecent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, ‘Hospice-enabled Dementia Care’.

scholarly journals National and international non-therapeutic recommendations for adult palliative and end-of-life care in times of pandemics: A scoping review

2021 ◽  
pp. 1-13
Author(s):  
Daniela Gesell ◽  
Eva Lehmann ◽  
Sonja Gauder ◽  
Marie Wallner ◽  
Steffen Simon ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Physical Contact ◽  
Healthcare Sector ◽  
Publication Date ◽  
Life Care ◽  
Therapeutic Recommendations ◽  
Seriously Ill

Abstract Objective The care of seriously ill and dying people is an important task, especially in times of pandemics and regardless of the patients’ infection status. Before the SARS-CoV-2 pandemic, healthcare systems were not sufficiently prepared for the challenges of palliative and end-of-life care during a pandemic. The aim was to identify and synthesize relevant aspects and non-therapeutic recommendations of palliative and end-of-life care of seriously ill and dying people, infected and uninfected, and their relatives after one year into the pandemic to outline what actions, practices, and procedures were taken to deal with the pandemic and its consequences. Method A scoping literature review following the methods of the PRISMA-ScR. The electronic literature search was conducted in 09/2020 and updated in 02/2021 using MEDLINE (Pubmed), with no restriction of publication date and eligibility criteria. In addition, a manual search was carried out. Results A total of 280 studies met the inclusion criteria and three main aspects have emerged. The reduction of physical contact due to the risk of infection severely limited the work of palliative care professionals and solutions had to be found to maintain palliative and end-of-life care structures. This has been accompanied by strict visitor restrictions and the need to support patients, relatives, and enable contact. The third relevant aspect is the integration of specialist palliative care expertise into other clinical settings. Significance of results This scoping review demonstrates the need for basic palliative care training for every healthcare professional. It supports the importance of developing a national strategy for palliative care in pandemic times in every country, including the digitalization of the healthcare sector to offer telecommunication/telemedicine.

scholarly journals Hospital-Based Palliative and End-of-Life Care in the COVID-19 Pandemic: A Scoping Review

2021 ◽  
pp. 104990912110570
Author(s):  
Michael Connolly ◽  
Mary Bell ◽  
Fiona Lawler ◽  
Fiona Timmins ◽  
Mary Ryder
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Hospital Setting ◽  
Palliative Care Service ◽  
Rapid Progression ◽  
Life Care ◽  
Care Providers ◽  
Palliative Care Teams

Aim: To identify the nature of the evidence reporting hospital-based palliative and end-of-life care during the COVID-19 pandemic. Background: The COVID-19 pandemic has seen an increase in the numbers of seriously ill people being cared for across all health services worldwide. Due to the rapid progression of severe symptoms, the majority of staff working in hospitals and other healthcare centres were providing end-of-life care. Little is known about the level of hospital-based palliative care service provided during the COVID-19 pandemic, particularly during surges in admission rates with an increased number of deaths accruing. Methods: A scoping review was conducted to search and select potential studies. The scoping review was guided by the framework of Arskey and O’Malley and advanced by the use of the methodology of the Joanna Briggs Institute. Results: Eighteen studies published between March 2020 and July 2021 were identified. Three broad categories included overall management strategy and logistics, symptom prevalence and management of patients with COVID-19 and end-of-life care needs within the current pandemic. Conclusions: This review highlights increased awareness and knowledge of palliative and end-of-life care provided in hospitals. The review also highlights the response of hospital-based palliative care teams to an evolving crisis, within the context of developed health systems under sustained and overwhelming pressure. Implications: Newly established clinical links and referral pathways developed during the initial COVID-19 surge between hospital-based palliative care and other healthcare teams, be continued and further enhanced. Understanding of the role of specialist palliative care providers in supporting palliative and end-of-life care within the hospital setting needs further investigation.

Cultural and Individual Barriers to Palliative Care From Different Angles: Data Triangulation in Practice

2018 ◽  
Vol 25 (8) ◽  
pp. 786-798 ◽  
Author(s):  
Silke Migala ◽  
Uwe Flick
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Cultural Values ◽  
End Of Life Care ◽  
Service Providers ◽  
Life Care ◽  
Individual Decision ◽  
Cultural Backgrounds ◽  
Care Family

When a disease turns terminal, end-of-life care replaces questions of cure and healing. Patients and relatives face the transition from health care to end-of-life care and the decision for a type of care (family, hospital, hospice). When people with a specific cultural background tend not to use available institutional support, the question of barriers and their location should be raised. In a study, patients, relatives, and service providers were asked about such barriers in the access of palliative care for Russian-speaking immigrants in Germany. Barriers in the health care system and in the possible clients’ individual or cultural backgrounds and their diverging or overlapping perceptions as well as interpretive patterns of using hospices could be identified. This article demonstrates for what we need data in analyzing cultural and individual decision dilemmas in Neo-Liberal Times in the encounter of diverse cultural values for improving service situations.

Fatigue and lethargy in palliative care

2020 ◽  
Vol 13 (5) ◽  
pp. 268-272
Author(s):  
Amarjodh Landa
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Ageing Population ◽  
Life Care ◽  
Wide Range ◽  
Significant Symptom

Fatigue is a particularly vague, yet significant symptom, which is commonly encountered in primary care. It affects a wide range of patients and has many causes. With an ageing population, fatigue is more likely to be multifactorial towards the end of a person’s life, and this can provide challenges in recognition and management. Patients are often incapacitated due to their fatigue and helping to manage it can lead to an improved quality of life. This article aims to briefly summarise the symptoms of fatigue, how to recognise it and the various causes. Current literature on the management of fatigue in end-of-life care, including pharmacological options, is critically reviewed.

scholarly journals The Liverpool Care Pathway for the Dying Patient: a critical analysis of its rise, demise and legacy in England

2018 ◽  
Vol 3 ◽  
pp. 15 ◽  
Author(s):  
Jane Seymour ◽  
David Clark
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Pathway ◽  
Historical Review ◽  
Evidence Base ◽  
Careful Consideration ◽  
Unintended Consequences ◽  
Life Care ◽  
Dying Patient

Background: The Liverpool Care Pathway for the Dying Patient (‘the LCP’) was an integrated care pathway (ICP) recommended by successive governments in England and Wales to improve end-of-life care, using insights from hospice and palliative care. It was discontinued in 2014 following mounting criticism and a national review.  The ensuing debate among clinicians polarised between ‘blaming’ of the LCP and regret at its removal. Employing the concept of ‘boundary objects’, we aimed to address three questions: 1) why and how did the LCP come to prominence as a vehicle of policy and practice 2) what factors contributed to its demise? 3) what immediate implications and lessons resulted from its withdrawal? Methods: We use primary and secondary sources in the public domain to assemble a critical and historical review. Results: The rapidity of transfer and translation of the LCP reflected uncritical enthusiasm for ICPs in the early 2000s. The subsequent LCP ‘scandal’ demonstrated the power of social media in creating knowledge, as well as conflicting perceptions about end-of-life interventions. While the LCP had some weaknesses in its formulation and implementation, it became the bearer of responsibility for all aspects of NHS end-of-life care. This was beyond its original remit. It exposed fault lines in the NHS, provided a platform for debates about the ‘evidence’ required to underpin innovations in palliative care and became a conduit of discord about ‘good’ or ‘bad’ practice in care of the dying. It also fostered a previously unseen critique of assumptions within palliative care.  Conclusions:  In contrast to most observers of the LCP story who refer to the dangers of scaling up clinical interventions without an evidence base, we call for greater assessment of the wider risks and more careful consideration of the unintended consequences that might result from the roll out of new end-of-life interventions.

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