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Frontiers in Public Health 2023The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal...
BACKGROUND
The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal care support services and increased the burden on many carers taking on the caring role for the first time. We aimed to explore decision-making about the place of care during the COVID-19 pandemic and the impact on experience from the perspectives of carers and hospice staff caring for people at the end-of-life.
METHODS
A qualitative study using virtual interviews was conducted between October 2020 and April 2021. Data were analyzed thematically using framework analysis, an analytical framework that enables qualitative research to be organized into defined themes derived from the research question. Findings were presented to stakeholders in policy roundtables between March 2022 and March 2023 and discussed collaboratively with staff, stakeholders, and the public to inform policy and practice change.
FINDINGS
A total of 37 participants (15 bereaved carers and 22 staff) were recruited via hospice services in England and Scotland. Four key themes were identified: (1) changing preferences relating to decision-making about the place of care and the impact at the time of death and into bereavement; (2) missed opportunities related to not being there, not having others around, and being robbed of memory-making; (3) the lone carer during a period of high intensity and reduced home support; (4) process vs. person-centered care resulting from changing rules and restrictions and prioritization of regulations over essential palliative care.
CONCLUSION
The study provides valuable global implications for all involved in end-of-life care. Despite great efforts to provide dignified, quality care, palliative care during the pandemic changed, focusing on essential 'physical care'. The psychological suffering experienced by staff and carers may need longer-term support mechanisms put in place, which will benefit from a public health approach. Policymakers should consider improving carer identification and resources for wider end-of-life care education to support the needs of carers, health and social care staff, and citizens.
Topics: Humans; Palliative Care; Caregivers; Hospices; Pandemics; COVID-19; Communicable Disease Control; Qualitative Research
PubMed: 38026434
DOI: 10.3389/fpubh.2023.1139313 -
CMAJ : Canadian Medical Association... Oct 2020
Topics: COVID-19; Decision Making, Shared; Health Care Rationing; Health Equity; Humans; Palliative Care; Pandemics; Patient Care Planning; Surge Capacity; Terminal Care; Withholding Treatment
PubMed: 33077529
DOI: 10.1503/cmaj.200465-f -
Annals of Palliative Medicine Jan 2018
Topics: Humans; Hypnosis; Pain Management; Palliative Care
PubMed: 29402093
DOI: 10.21037/apm.2018.01.02 -
The Medical Journal of Malaysia Dec 2002
Topics: Humans; Palliative Care
PubMed: 12733161
DOI: No ID Found -
Gesundheitswesen (Bundesverband Der... Jul 2023Despite the existence of a legislative framework, palliative care and hospice support in nursing homes vary widely. Although most nursing homes have palliative care...
OBJECTIVES
Despite the existence of a legislative framework, palliative care and hospice support in nursing homes vary widely. Although most nursing homes have palliative care concepts by now, they are rarely integrated into everyday practice. This study aims to examine differences in palliative and hospice care and to determine the causes of discrepancies between theoretical framework and everyday practice.
METHODS
Based on a pilot project, in depth structural and process analyses of two nursing homes in urban and rural areas in North Rhine-Westphalia were conducted. In addition, three nursing homes of an extended group of providers as well as an expert advisory board was included to minimize (provider-) specific characteristics and to expand findings.
RESULTS
Although the proportion of palliative residents and their average age was comparable, analyses revealed significant differences between the nursing homes regarding the palliative length of stay (213.2 days vs. 88.6 days) as well as the mortality rate of palliative residents among all death cases (26% vs. 63.6%). Furthermore, internal processes within the nursing homes differed vastly despite similar concepts and procedural instructions. As a result, palliative care formally started at an earlier stage in nursing home X. Besides that, the identification of palliative care situations, as well as communication, organizational processes and the inclusion of cooperation partners, took place without fixed structures and was based on the subjective handling of staff members in both facilities.
CONCLUSIONS
It turns out to be challenging for nursing homes to implement theoretical framework into everyday practice. To facilitate this process, aside from practicable assessments, defined responsibilities and organizational support, financing concepts at health policy level need to be established.
Topics: Humans; Germany; Hospice Care; Nursing Homes; Palliative Care; Pilot Projects
PubMed: 36220107
DOI: 10.1055/a-1926-6942 -
Annals of Palliative Medicine Jul 2018In the recent years, there has been an increase in awareness with regards to the role of palliative care (PC) in management of neurologic diseases. In 1996, the need to... (Review)
Review
In the recent years, there has been an increase in awareness with regards to the role of palliative care (PC) in management of neurologic diseases. In 1996, the need to incorporate PC in the care for patients with neurologic conditions was recognized by the American Academy of Neurology (AAN) Ethics and Humanities Subcommittee. The gaps in research, education and the ability to deliver adequate PC were then acknowledged by the National Academy of Sciences with their publication of "Approaching death: improving care at the end of life" and most recently, continued goals in improving PC was highlighted by another recent publication "Dying in America: improving quality and honoring individual preferences near the end of life". The complexity of managing neurologic patients brings about challenges and ethical issues in this setting. The aim of this review is to discuss and summarize the challenges and ethical issues in the context of PC management of patients with advanced acute, rapidly progressive, slowly-progressive or degenerative neurological conditions that are commonly encountered in practice.
Topics: Brain Injuries; Decision Making; Ethics; Humans; Nervous System Diseases; Palliative Care; Time Factors; Tissue and Organ Procurement; Withholding Treatment
PubMed: 29156918
DOI: 10.21037/apm.2017.09.09 -
BMC Palliative Care Mar 2020The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS...
BACKGROUND
The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS team provides palliative care for mainly cancer patients and their family members and manages the patient pathway after being discharged from the hospital. The service started in 2014 with 300-400 patient visits per year. The aim of this study is to give a comprehensive overview of the PCCS programme guided by a conceptual framework designed by SELFIE ("Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, FInancing, and performancE"), a Horizon2020 funded EU project and to identify the facilitators and barriers to its wider implementation.
METHODS
PCCS has been selected by the SELFIE consortium for in-depth evaluation as one of the Hungarian integrated care models for persons with multi-morbidity. The qualitative analysis of the PCCS programme was based on available documents of the care provider and interviews with different stakeholders related to the programme.
RESULTS
The integrated, multidisciplinary and patient-centred approach was well-received among the patients, family members and clinical departments, as verified by the increasing number of requests for consultations. As a result of the patient pathway management across providers (e.g. from inpatient care to homecare) a higher level of coordination could be achieved in the continuity of care for seriously-ill patients. The regulatory framework has only partially been established, policies to integrate care across organizations and sectors and adequate financial mechanism to support the enhancement and sustainability of the PCCS are still missing.
CONCLUSIONS
The service integration of palliative care could be implemented successfully in an academic hospital in Hungary. However, the continuation and enhancement of the programme will require further evidence on the performance of the integrated model of palliative care and a more systematic approach particularly regarding the evaluation, financing and implementation process.
Topics: Humans; Hungary; Palliative Care; Qualitative Research; Quality of Health Care; Referral and Consultation
PubMed: 32220251
DOI: 10.1186/s12904-020-00541-0 -
Revista Brasileira de Enfermagem 2018to analyze the attributes, antecedents and consequents of the family conference concept. (Review)
Review
OBJECTIVE
to analyze the attributes, antecedents and consequents of the family conference concept.
METHOD
Walker and Avante's method for concept analysis and the stages of the integrative review process, with a selection of publications in the PubMed, Cinahl and Lilacs databases focusing on the family conference theme in the context of palliative care.
RESULTS
the most cited antecedents were the presence of doubts and the need to define a care plan. Family reunion and working instrument were evidenced as attributes. With respect to consequents, to promote the effective communication and to establish a plan of consensual action were the most remarkable elements.
FINAL CONSIDERATIONS
the scarcity of publications on the subject was observed, as well as and the limitation of the empirical studies to the space of intensive therapy. Thus, by analyzing the attributes, antecedents and consequents of the concept it was possible to follow their evolution and to show their efficacy and effectiveness as a therapeutic intervention.
Topics: Concept Formation; Consensus Development Conferences as Topic; Family; Humans; Palliative Care
PubMed: 29324964
DOI: 10.1590/0034-7167-2016-0055 -
Journal of Pain and Symptom Management May 2007Quality palliative care is of interest to everyone who is receiving or providing care. The quality of the care that is provided depends on everyone's understanding of... (Review)
Review
Quality palliative care is of interest to everyone who is receiving or providing care. The quality of the care that is provided depends on everyone's understanding of the underlying model that is guiding patient/family care; the organization's mission and vision; and the consistency of the language, practice and treatment guidelines, outcome assessment and performance improvement strategies that everyone is using from day-to-day. Implementation of quality palliative care within an organization starts with careful strategic planning followed by the systematic development of guidelines, outcome measures, indicators, standards and a performance improvement process through an inclusive consensus-building process. By modifying existing widely-accepted models, organizations can expedite their implementation of quality palliative care. Through careful attention to evolving this process over time, everyone will be the benefactors of a high-quality palliative care experience.
Topics: Humans; Models, Organizational; Palliative Care; Quality Assurance, Health Care
PubMed: 17482043
DOI: 10.1016/j.jpainsymman.2007.02.033 -
BMJ Supportive & Palliative Care Jun 2018Current coverage of palliative care services in sub-Saharan Africa (SSA) remains woefully inadequate, but harnessing mHealth could be one approach to facilitate greater... (Review)
Review
BACKGROUND
Current coverage of palliative care services in sub-Saharan Africa (SSA) remains woefully inadequate, but harnessing mHealth could be one approach to facilitate greater service coverage and engagement with patients with life-limiting progressive disease.
AIMS
A systematic literature review to identify the development and use of mHealth in palliative care services in SSA.
METHODS
13 electronic databases from 1990 to 2015 were searched alongside the manual searching of journals and citation searching of included article reference lists. Articles were assessed against inclusion and exclusion criteria and study details extracted and tabulated by two researchers. Studies were plotted against a modified WHO mHealth and ICT framework to classify how they are targeting health system strengthening.
RESULTS
Of the 1110 articles identified, 5 met the inclusion criteria, describing mHealth use in Nigeria, Uganda, Kenya and Malawi. Descriptive analysis has shown that existing mHealth interventions for palliative care services in SSA are limited in number and are being developed for use at the palliative treatment, guidance and coordination stage of care provision. Levels of detail about the development and structure of interventions are low.
CONCLUSIONS
mHealth interventions for palliative care in SSA are limited. This is an opportune time to explore how evidence-based mHealth interventions could form part of the evolving palliative care services in the region.
Topics: Africa South of the Sahara; Humans; Palliative Care; Telemedicine
PubMed: 27207721
DOI: 10.1136/bmjspcare-2015-001034