OBJECTIVE: The concept of a good death is a motivating factor for end of life care policy; this article examines what English end-of-life care (EOLC) policy defines as a good death.
METHODS: Critical discourse analysis of policy documents and policy-promoting materials published between 2008 and 2016.
RESULTS: Policy explicitly defines a good death as having the following attributes: being treated as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends. Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EOLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person's preferences, all involved are to work towards achieving these; the place of death is important; the person's family are involved and the needs of the bereaved are considered.
CONCLUSION: This analysis indicates the complex nature of the current discourses around good death in EOLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality end-of-life care looks like, rather than assume 'good death' is a suitable outcome statement.
OBJECTIVES: Adult day service centers (ADSCs) may serve as an entrée to advance care planning. This study examined state requirements for ADSCs to provide advance directives (AD) information to ADSC participants, ADSCs' awareness of requirements, ADSCs' practice of providing AD information, and their associations with the percentage of participants with ADs.
METHODS: Using the 2016 National Study of Long-Term Care Providers, analyses included 3,305 ADSCs that documented ADs in participants' files. Bivariate and linear regression analyses were conducted.
RESULTS: Nine states had a requirement to provide AD information. 80.8% of ADSCs provided AD information. 41.3% of participants had documented ADs. There were significant associations between state requirement, awareness, and providing information with AD prevalence. State requirement was mediated by awareness.
DISCUSSION: This study found many ADSCs provided AD information, and ADSCs that thought their state had a requirement and provided information was associated with AD prevalence, regardless of state requirements.
Background: Service provision is a key domain to assess national-level palliative care development. Three editions of the European Association for Palliative Care (EAPC) Atlas of Palliative Care monitored the changes in service provision across Europe since 2005.
Aim: To study European trends of specialized service provision at home care teams, hospital support teams, and inpatient palliative care services between 2005 and 2019.
Design: Secondary analysis was conducted drawing from databases on the number of specialized services in 2005, 2012, and 2019. Ratios of services per 100,000 inhabitants and increase rates on number of services for three periods were calculated. Analysis of variance (ANOVA) analyses were conducted to determine significant changes and chi-square to identify countries accounting for the variance. Income-level and sub-regional ANOVA analysis were undertaken.
Setting: 51 countries.
Results: Forty-two countries (82%) increased the number of specialized services between 2005 and 2019 with changes for home care teams (104% increase-rate), inpatient services (82%), and hospital support teams (48%). High-income countries showed significant increase in all types of services (p < 0.001), while low-to-middle-income countries showed significant increase only for inpatient services. Central–Eastern European countries showed significant improvement in home care teams and inpatient services, while Western countries showed significant improvement in hospital support and home care teams. Home care was the most prominent service in Western Europe.
Conclusion: Specialized service provision increased throughout Europe, yet ratios per 100,000 inhabitants fell below the EAPC recommendations. Western Europe ratios’ achieved half of the suggested services, while Central–Eastern countries achieved only a fourth. High-income countries and Western European countries account for the major increase. Central–Eastern Europe and low-to-middle-income countries reported little increase on specialized service provision.
Africa is characterized by a high burden of disease and health system deficits, with an overwhelming and increasing demand for palliative care (PC). Yet only one African country is currently considered to have advanced integration of palliative care into medical services and generalized PC is said to be available in only a handful of others. The integration of PC into all levels of a health system has been called for to increase access to PC and to strengthen health systems. Contextually appropriate evidence to guide integration is vital yet limited. This qualitative systematic review analyses interventions to integrate PC into African health systems to provide insight into the ‘how’ of PC integration. Forty articles were identified, describing 51 different interventions. This study found that a variety of integration models are being applied, with limited best practices being evaluated and repeated in other contexts. Interventions typically focused on integrating specialized PC services into individual or multiple health facilities, with only a few examples of PC integrated at a population level. Four identified issues could either promote integration (by being present) or block integration (by their absence). These include the provision of PC at all levels of the health system alongside curative care; the development and presence of sustainable partnerships; health systems and workers that can support integration; and lastly, placing the client, their family and community at the centre of integration. These echo the broader literature on integration of health services generally. There is currently a strong suggestion that the integration of PC contributes to health system strengthening; however, this is not well evidenced in the literature and future interventions would benefit from placing health systems strengthening at the forefront, as well as situating their work within the context of integration of health services more generally.
The Veneto region of northern Italy, which has about 5 million inhabitants, was the second area of the country, after Lombardy, to face the spread of COVID-19. After the first case on February 21, 2020, the number of cases increased exponentially, and lockdown was enforced. The regional healthcare system was forced to implement appropriate measures to protect patients and healthcare providers from the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, which causes COVID-19, while ensuring continued care.
Globally, 40 million people need palliative care; about 69% are people over 60 years of age. The highest proportion (78%) of adults are from low- and middle-income countries (LMICs), where palliative care still developing and is primarily limited to urban areas. This integrative review describes strategies used by LMICs to establish palliative care in rural areas. A rigorous integrative review methodology was utilized using four electronic databases (Ovid MEDLINE, Ovid Emcare, Embase classic+Embase and CINAHL). The search terms were: ‘palliative care’, ‘hospice care’, ‘end of life care’, ‘home-based care’, ‘volunteer’, ‘rural’, ‘regional’, ‘remote’ and ‘developing countries’ identified by the United Nations (UN) as ‘Africa’, ‘Sub-Saharan Africa’, ‘low-income’ and ‘middle- income countries’. Thirty papers published in English from 1990 to 2019 were included. Papers were appraised for quality and extracted data subjected to analysis using a public health model (policy, drug availability, education and implementation) as a framework to describe strategies for establishing palliative care in rural areas. The methodological quality of the reviewed papers was low, with 7 of the 30 being simple programme descriptions. Despite the inclusion of palliative care in national health policy in some countries, implementation in the community was often reliant on advocacy and financial support from non-government organizations. Networking to coordinate care and medication availability near-patient homes were essential features of implementation. Training, role play, education and mentorship were strategies used to support health providers and volunteers. Home- and community-based palliative care services for rural LMICs communities may best be delivered using a networked service among health professionals, community volunteers, religious leaders and technology.
The emergence of the Coronavirus Disease 2019 (COVID-19) pandemic has necessitated an interim restructuring of the healthcare system in accordance with public health preventive measures to mitigate spread of the virus while providing essential healthcare services to the public. This article discusses how the Palliative Care Team of the Komfo Anokye Teaching Hospital in Ghana has modified its services in accordance with public health guidelines. It also suggests a strategy to deal with palliative care needs of critically ill patients with COVID-19 and their families.
In the last six months of life, 30% of Medicare beneficiaries use the skilled nursing facility (SNF) benefit for post-acute care after a hospital stay. Frequently, the circumstances that indicate a need for SNF care are the same as those of a worsening illness trajectory such as functional decline and falls, unstable health conditions, and pain and other symptoms. The following case example and narrative discussion describes the national implications of this issue and the need for Medicare policy changes that allow for concurrent rehabilitative care and hospice services.
Although palliative care as a discipline in high income countries is maturing, it is still somewhat in its infancy in sub-Saharan Africa, an area where this type of care is needed the most: more than 80% of people in urgent need of palliative care live in low- and middle-income countries (LMICs). We will describe why the development of palliative care in LMICs is increasingly essential, and how it is currently still underdeveloped. In this manuscript, we discuss the challenges in organizing palliative care in LMICs in regard to the four WHO palliative care pillars: policy, education, medication, and implementation. We will illustrate how several Sub-Saharan African countries are increasingly able to provide palliative care analyzed in terms of these pillars. Ultimately, scientific research and cost-effectiveness analyses of well-developed palliative programs, should encourage both local and international governments and au-thorities to provide more capital and human recourses for palliative care in the future.
Whether it is through enlisting primary providers, building a champion workforce, or hiring more specialist consultants, there is no question that palliative programming must be at the heart of our healthcare system’s quality transformation.
Benefits newly available under Medicare Advantage are not well-known to consumers and uptake has been limited. At the same time, CMS has propsed funding the hospice benefit differently, which would allow MA plans to “carve in” to this benefit, creating additional uncertainty.
Que ce soit en France ou ailleurs, la question de l'euthanasie divise encore l'opinion publique. La Belgique, en dépénalisant sa pratique depuis 2002, fait figure d'avant-gardiste. Mais au-delà de la polémique, cette question délicate conserve bien souvent une part d'opacité pour les patients et leurs proches, tout comme pour les professionnels de la santé. Engagé depuis quinze ans dans la défense de cette liberté de choix, le docteur François Damas réalise ici un état des lieux des protocoles existants et aborde la réalité du terrain avec humanité et délicatesse.
Ce livre constitue une enquête sur l'affaire Vincent Lambert, homme en état végétatif autour duquel sa famille se déchire à coups de procédure judiciaire. En révélant les dimensions politique et romanesque de ce drame familial, elle pose également les questions éthiques de la fin de vie, de l'euthanasie et du suicide assisté.
The field of palliative care (PC) has spent the past decade demonstrating that it improves outcomes for patients, clinicians, and health systems. Forward-thinking organizations preparing for a reimbursement system rooted in value have built robust inpatient PC programs and are rapidly moving toward the outpatient and community settings as well. As PC programs get larger and are increasingly tasked with leading a wide variety of diverse initiatives, population health principles can help to focus programs on high-value activities. This article, written by population health researchers and PC clinicians, seeks to provide PC teams nationally with a variety of population health strategies and tools to guide PC delivery throughout the health system and beyond.
There is a growing recognition of significant, unmet palliative care needs in nursing facilities, yet limitations in the workforce limit access to palliative care services. Attention to palliation is particularly important when there are efforts to reduce hospitalizations to help ensure there are no unintended harms associated with treating residents in place. A specialized palliative care registered nurse (PCRN) role was developed as part of the OPTIMISTIC (Optimizing Patient Transfers, Impacting Medical quality, and Improving Symptoms: Transforming Institutional Care) program, a federally funded project to reduce potentially avoidable hospitalizations. Working in collaboration with existing clinical staff and medical providers, the PCRN focuses on managing symptoms, advance care planning, achieving goal concordant care, and promoting quality of life. The PCRN serves as a resource for families through education and support. The PCRN also provides education and mentorship to staff to increase their comfort, knowledge, and skills with end-of-life care. The goals of this article are to provide an overview of the PCRN role and its implementation in nursing facilities and describe core functions that are transferrable to other contexts.
Recent reports highlight an inconsistent provision of palliative and end-of-life (palliative) care across Australia, particularly in regional, rural and remote areas. Palliative care improves quality of life and the experience of dying, and all people should have equitable access to quality needs-based care as they approach and reach the end of their lives. A palliative approach to care is crucial in rural and remote Australia where there is a reliance for such care on generalist providers amid the challenges of a limited workforce, poorer access, and vast geography. This article describes the development and implementation of the Far West NSW Palliative and End-of-Life Model of Care, a systematic solution that could drive improvement in the provision of a quality palliative approach to care and support from any clinician in a timely manner, for patients, their families and carers anywhere.
In Spain, health competencies are decentralized, and each autonomous community implements its own plans. Our aim is to determine if the existence of regional palliative care plans implies an improvement in health care coverage. We reviewed regional palliative care plans published in Spain and analyzed the following variables: number and profile of palliative care resources, guidelines and objectives of implementation of resources of these plans, and compliance with European standards. The publication of regional plans is associated with an increase in specific resources in the following years. From 2004 to 2009, the implementation of plans in 6 autonomous communities was associated with an increase in palliative care resources compared to those without a strategy (odds ratio: 1.58, P = .02) or with a settled plan (odds ratio: 1.40, P = .07). The same phenomenon was observed between 2009 and 2015 in 4 autonomous communities and 2 autonomous cities compared with those without a strategy (odds ratio: 2.49, P = .001) and those that implemented a plan before 2009 (odds ratio: 2.62, P < .001). Updating and evaluating these regional plans are also associated with the growth of palliative care resources.