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BMC Palliative Care Mar 2018The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to... (Review)
Review
BACKGROUND
The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work.
METHODS
A scoping review was completed using PRISMA guidelines. PubMed, Embase, CINAHL, Web of Science, Cochrane Library, EconLit, PsycINFO, Centre for Reviews and Dissemination, Database of Abstracts of Reviews of Effects, and National Health Service Economic Evaluation Database were searched from inception to August 2016. Inclusion criteria included: 1) care was provided in the "home of the patient" as defined by the study, 2) outcomes were reported, and 3) reported original data. Thematic component analysis was completed to categorize interventions.
RESULTS
Fifty-three studies formed the final data set. The literature varied extensively. Five themes were identified: accessibility of healthcare, caregiver support, individualized patient centered care, multidisciplinary care provision, and quality improvement. Primary outcomes were resource use, symptom burden, quality of life, satisfaction, caregiver distress, place of death, cost analysis, or described experiences. The majority of studies were of moderate or unclear quality.
CONCLUSIONS
There is robust literature of varying quality, assessing different components of palliative care in the home interventions, and measuring different outcomes. To be meaningful to patients, these interventions need to be consistently evaluated with outcomes that matter to patients. Future research could focus on reaching a consensus for outcomes to evaluate palliative care in the home interventions.
Topics: Home Care Services; Humans; Outcome Assessment, Health Care; Palliative Care; Quality of Life
PubMed: 29514620
DOI: 10.1186/s12904-018-0299-z -
The Oncologist Apr 2017This article reviews the current state of end‐of‐life care, analyzes the clinical and financial impact of palliative care, and proposes areas of future research and... (Review)
Review
This article reviews the current state of end‐of‐life care, analyzes the clinical and financial impact of palliative care, and proposes areas of future research and development.
Topics: Humans; Palliative Care; Terminal Care
PubMed: 28314840
DOI: 10.1634/theoncologist.2016-0277 -
BMJ Supportive & Palliative Care Dec 2019Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families...
OBJECTIVES
Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences.
METHODS
Action research was used to explore the potential for hospices to work with schools and engage participants in change processes. The research was conducted in 1 hospice and 2 primary schools in Scotland. Participants included children, parents and school and hospice staff.
RESULTS
Seven innovations were identified that were found to be useful for the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested.
CONCLUSIONS
This research adds to knowledge about how hospices might engage in community engagement activities that encourage school staff to develop greater openness and support around end-of-life and bereavement care for their children. This will require a rethinking of normal hospice services to also participate in community capacity building.
Topics: Bereavement; Capacity Building; Child; Curriculum; Delivery of Health Care; Delivery of Health Care, Integrated; Female; Hospice Care; Hospices; Humans; Male; Palliative Care; School Health Services; Scotland
PubMed: 27515864
DOI: 10.1136/bmjspcare-2015-001092 -
Supportive Care in Cancer : Official... Nov 2018Muslim norms concerning palliative sedation can differ from secular and non-Muslim perceptions. Muslim physicians working in a Western environment are expected to...
BACKGROUND
Muslim norms concerning palliative sedation can differ from secular and non-Muslim perceptions. Muslim physicians working in a Western environment are expected to administer palliative sedation when medically indicated. Therefore, they can experience tension between religious and medical norms.
OBJECTIVE
To gain insight into the professional experiences of Muslim physicians with palliative sedation in terms of religious and professional norms.
DESIGN
Interpretative phenomenological study using semi-structured interviews to take a closer look at the experiences of Muslim physicians with palliative sedation. Data were recorded, transcribed and analysed by means of interpretative phenomenological analysis (IPA).
PARTICIPANTS
Ten Muslim physicians, working in the Netherlands, with professional experience of palliative sedation.
RESULTS
Two main themes were identified: professional self-concept and attitudes towards death and dying. Participants emphasized their professional responsibility when making treatment decisions, even when these contravened the prevalent views of Islamic scholars. Almost all of them expressed the moral obligation to fight their patients' pain in the final stage of life. Absence of acceleration of death was considered a prerequisite for using palliative sedation by most participants.
CONCLUSIONS
Although the application of palliative sedation caused friction with their personal religious conceptions on a good death, participants followed a comfort-oriented care approach corresponding to professional medical standards. All of them adopted efficient strategies for handling of palliative sedation morally and professionally. The results of this research can contribute to and provide a basis for the emergence of new, applied Islamic ethics regarding palliative sedation.
Topics: Adult; Attitude of Health Personnel; Attitude to Death; Culturally Competent Care; Decision Making; Female; Humans; Hypnotics and Sedatives; Interviews as Topic; Islam; Male; Middle Aged; Netherlands; Palliative Care; Physicians; Religion and Medicine; Surveys and Questionnaires
PubMed: 29736869
DOI: 10.1007/s00520-018-4229-7 -
BMC Palliative Care Jan 2017Over the past decades there has been a significant increase in the number of published clinical trials in palliative care. However, empirical evidence suggests that... (Review)
Review
BACKGROUND
Over the past decades there has been a significant increase in the number of published clinical trials in palliative care. However, empirical evidence suggests that there are methodological problems in the design and conduct of studies, which raises questions about the validity and generalisability of the results and of the strength of the available evidence. We sought to evaluate the methodological characteristics and assess the quality of reporting of clinical trials in palliative care.
METHODS
We performed a systematic review of published clinical trials assessing therapeutic interventions in palliative care. Trials were identified using MEDLINE (from its inception to February 2015). We assessed methodological characteristics and describe the quality of reporting using the Cochrane Risk of Bias tool.
RESULTS
We retrieved 107 studies. The most common medical field studied was oncology, and 43.9% of trials evaluated pharmacological interventions. Symptom control and physical dimensions (e.g. intervention on pain, breathlessness, nausea) were the palliative care-specific issues most studied. We found under-reporting of key information in particular on random sequence generation, allocation concealment, and blinding.
CONCLUSIONS
While the number of clinical trials in palliative care has increased over time, methodological quality remains suboptimal. This compromises the quality of studies. Therefore, a greater effort is needed to enable the appropriate performance of future studies and increase the robustness of evidence-based medicine in this important field.
Topics: Clinical Trials as Topic; Data Accuracy; Humans; Medicine; Outcome and Process Assessment, Health Care; Palliative Care; Research Design; Sample Size; Surveys and Questionnaires
PubMed: 28122560
DOI: 10.1186/s12904-016-0181-9 -
Implementation Science : IS Jul 2015The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a... (Review)
Review
BACKGROUND
The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care.
METHODS
Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy.
RESULTS
From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies).
CONCLUSIONS
This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care.
Topics: Humans; Palliative Care; Program Development; Quality Improvement
PubMed: 26210499
DOI: 10.1186/s13012-015-0293-2 -
Journal of Pain and Symptom Management Feb 2018The Worldwide Hospice Palliative Care Alliance (WHPCA) is an international non-governmental organization registered as a charity in England and Wales that was...
The Worldwide Hospice Palliative Care Alliance (WHPCA) is an international non-governmental organization registered as a charity in England and Wales that was established in 2008 following a series of international gatherings that highlighted the important need for palliative care to be included in global policy and health planning. The vision of the WHPCA is a world with universal access to hospice and palliative care. Its mission is to foster, promote and influence the delivery of affordable, quality palliative care. This article describes the evolution of the WHPCA and what it has been able to accomplish in the eight years since its formation. These accomplishments include effective advocacy with United Nations bodies, acceptance as a non-governmental organization in official relations with the World Health Organization and the UN Economic and Social Council, publication of many position papers on critical aspects of palliative care, publication of the Global Atlas of Palliative Care at the End of Life, development of toolkits for palliative care development, publication of the international edition of ehospice, and management of World Hospice and Palliative Care Day each year. Some of the many challenges to the growth and development of palliative care globally are described along with future plans.
Topics: Health Services Accessibility; Hospice Care; Humans; International Agencies; Internationality; Palliative Care; Patient Advocacy
PubMed: 28797861
DOI: 10.1016/j.jpainsymman.2017.03.020 -
Cancer Jun 2018Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain... (Review)
Review
Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018;124:2278-88. © 2018 American Cancer Society.
Topics: Child; Health Services Needs and Demand; Humans; Medical Oncology; Neoplasms; Palliative Care; United States; Workforce
PubMed: 29451689
DOI: 10.1002/cncr.31265 -
Minerva Anestesiologica Dec 2017Palliative sedation (PS), the medical act of decreasing a patient's awareness to relieve otherwise intractable suffering, is considered by some commentators to be...
Palliative sedation (PS), the medical act of decreasing a patient's awareness to relieve otherwise intractable suffering, is considered by some commentators to be controversial because of its consequences on residual survival and/or quality of life, and to be inappropriate for treating pure existential suffering. We will argue that PS must be always proportional, i.e. controlling refractory symptoms while keeping the loss of personal values (communication, affective relationships, care relationship) as low as possible, and that imminence of death is necessary too, from an ethical point of view, if a deep and continuous sedation (DCS) is proposed. Moreover, in case of pure existential suffering DCS should only be considered after repeated trials of respite sedation. The use of progressive consent and advance care planning to share the decision with the patient and to involve the family in the decision process as much as the patient desires is another ethical aspect to be pursued. Producing, implementing and sustaining guidelines at the higher scientific and professional level promise to help in improving both clinical and ethical aspects of the practice of PS.
Topics: Bioethical Issues; Deep Sedation; Humans; Palliative Care
PubMed: 28707846
DOI: 10.23736/S0375-9393.17.12091-2 -
Journal of Pain and Symptom Management Feb 2018Human rights standards to address palliative care have developed over the last decade.
CONTEXT
Human rights standards to address palliative care have developed over the last decade.
OBJECTIVES
This article aims to examine key milestones in the evolution of human rights standards to address palliative care, relevant advocacy efforts, and areas for further growth.
METHODS
The article provides an analysis of human rights standards in the context of palliative care through the lens of the right to health, freedom from torture and ill treatment, and the rights of older persons and children.
RESULTS
Significant developments include the following: 1) the first human rights treaty to explicitly recognize the right to palliative care, the Inter-American Convention on the Rights of Older Persons; 2) the first World Health Assembly resolution on palliative care; 3) a report by the UN Special Rapporteur on Torture with a focus on denial of pain treatment; 4) addressing the availability of controlled medicines at the UN General Assembly Special Session on the World Drug Problem.
CONCLUSION
Development of human rights standards in relation to palliative care has been most notable in the context of the right to health, freedom from torture and ill treatment, and the rights of older persons. More work is needed in the context of the rights of children, and human rights treaty bodies are still not consistently addressing state obligations with regards to palliative care.
Topics: Age Factors; Human Rights; Humans; International Agencies; Pain Management; Palliative Care; Patient Advocacy; Torture
PubMed: 28800997
DOI: 10.1016/j.jpainsymman.2017.03.027