India, being home to one -sixth of the world's population has a huge burden of suffering from life limiting diseases. It is estimated that in India the total no. of people who need palliative care (PC)is likely to be 5.4 million people a year. Though PC was introduced nearly 30 years ago, it is still in its infancy with less than 1% of patients having access to PC. India ranks at the bottom of the Quality Of Death Index in overall score. Obstacles are too many and not only include factors like population density, poverty, geographical density, restrictive policies regarding opioid prescription, workforce development at base level but also limited national PC policy and lack of institutional interest in palliative care. However there has been a steady progress in the past few years through community owned PC services. South Indian state of Kerala which has 3% of Indian population, stands out in terms of achieving coverage of palliative care. On the national level recent years saw several palpable changes including the creation of a National Programme for Palliative care and also the Parliament amended India's cumbersome Narcotic Drugs and Psychotropic Substances Act (NDPS) thus overcoming many of the legal barriers to opioid access. Initially WHO and now the IAPC has taken over the responsibility of spreading the message of palliative care in India, but we still have a long way to go. Education of the professionals and sensitization of the public through awareness campaigns are vitals for improving access to PC in India. Process of implementing PC plan into action requires strong Advocacy, political support and integration across all levels of care.
Objectives: To analyze the association of an incentivization program to promote death outside of hospitals with changes in place of death.
Design: A longitudinal observational study using national databases.
Setting and Participants: Participants comprised Japanese decedents (=65 years) who had used long-term care insurance services and died between April 2007 and March 2014.
Methods: Using a database of Japanese long-term care insurance service claims, subjects were divided into community-dwelling and residential aged care (RAC) facility groups. Based on national death records, change in place of death after the Japanese government initiated incentivization program was observed using logistic regression.
Results: Hospital deaths decreased by 8.7% over time, mainly due to an increase in RAC facility deaths. The incentivization program was more associated with decreased in-hospital deaths for older adults in RAC facilities than community-dwelling older adults.
Conclusions and Implications: In Japan, the proportion of in-hospital deaths of frail older adults decreased since the health services system introduced the incentivization program for end-of-life care outside of hospitals. The shift of place of death from hospitals to different locations was more prominent among residents of RAC facilities, where informal care from laymen was required less, than among community residents.
Background: In the United States, the percentage of hospitals over 50 beds with palliative care programs has risen substantially from 7% of hospitals in 2001 to 72% in 2017. Yet the dynamic nature of program adoption and closure over time is not known.
Objective: To examine the rate of palliative care program adoption and closure and associated hospital and geographic characteristics in a national sample of U.S. hospitals.
Design: Adoption and closure rates were calculated for 3696 U.S. hospitals between 2009 and 2017. We used multivariable logistic regression models to examine the association between adoption and closure status and hospital, geographic, and community characteristics.
Setting/Subjects: All nonfederal general medical and surgical, cancer, heart, and obstetric or gynecological hospitals, of all sizes, in the United States in operation in both 2009 and 2017.
Results: By 2017, 34.9% (812/2327) of the hospitals without palliative care in 2009 had adopted palliative care programs, and 15.0% (205/1369) of the hospitals with programs had closed them. In multivariable models, hospitals in metropolitan areas, nonprofit and public hospitals (compared to for-profit hospitals), and those with residency training approval by the Accreditation Council for Graduate Medical Education were significantly more likely to adopt and significantly less likely to close palliative care programs during the study period.
Conclusions: This study indicates that palliative care is not equitably adopted nor sustained by hospitals in the United States. Federal and state interventions may be required to ensure that high-quality care is available to our nation's sickest patients.
BACKGROUND: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life.
AIM: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage.
DESIGN: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants' reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach.
SETTING/PARTICIPANTS: Twenty-one workers employed within three public services in Western Sydney were recruited.
RESULTS: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural.
CONCLUSIONS: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.
Community-based palliative care services and their integration with public health systems are of considerable contemporary interest. However, the conflicts that emerge in such a complex organizational field comprising multiple stakeholders with diverse interests remain under-examined. Our analysis of community-based palliative care in Kerala identifies four ‘logic conflicts’ that indicate competing frames of reference in an organizational field. These conflicts shape decision-making and coordination and manifest as: 1) professional versus community logics, 2) centralized versus decentralized governance logics, 3) generalist versus specialist care logics, 4) charity versus rights-based logics. We also identify two mechanisms – forming coalitions and fostering plurality – by which actors manage these conflicting logics. We discuss contributions to public health palliative care conversations and implications for nurturing and sustaining care communities.
Palliative care helps improve the quality of life of individuals facing life-limiting illness throughout the course of their disease. In Canada, delivery and access to palliative care has been fraught with challenges including differential availability of services based on geography, funding, language, and socioeconomic status. Many groups, including the World Health Organization, have advocated for a public health approach to palliative care as an antidote to fragmented service delivery. Multiple scholars, academics, and public health advocates have suggested that a public health approach to palliative care can help with issues of access, equity, and cost. Through the lens of Kingdon’s Multiple Streams Framework, this commentary will explore potential reasons why a public health approach to palliative care has not been adopted in the Canadian context and why this is an opportune time to consider this policy innovation. The Compassionate Communities concept is discussed as a potential solution to a public health approach to palliative care delivery.
Background: Public policy has been a foundational component of the World Health Organization public health model for palliative care development since 1990. There is, however, limited evidence on the existence and character of palliative care policy at the country level.
Objective: To identify, report on, and map the presence of national palliative care strategies, plans, legislation, and dedicated government resources in 198 countries.
Design: An online survey generated 2017 data on indicators of national policy for palliative care.
Subjects: In-country experts on palliative care.
Measurements: The survey included specific questions on the existence and status of national strategies or plans, recognition of palliative care in national law, and dedicated government support.
Results: Fifty-five countries have a national strategy or plan for palliative care of some sort, though levels of implementation vary. Forty-seven countries have some reference to palliative care in national law, and 24 have some form of stand-alone national law on palliative care provision or recognize it as a right in the constitution. Sixty-six countries have a dedicated section within government with responsibility for palliative care.
Conclusions: There is a long way to go before palliative care around the world is universally supported by public policy intentions that will support its required development.
PURPOSE OF REVIEW: This review was undertaken to analyze the main reasons behind the limited development of hospice care in China, and to put forward some suggestions.
RECENT FINDINGS: Although the Chinese government has increased its support for hospice care in recent years, however, owing to the lack of education around hospice care and the heavy influence of the traditional Chinese Confucian concept of "filial piety," many individuals resist hospice care. Moreover, due to impaired patient rights, inadequate composition of hospice care teams, unbalanced geographical distribution, and limited service range, the development of hospice care in China is hindered. Hospice care education and continued training should be popularized and the government should strengthen the legal structure of the medical system to protect the rights of patients, families, and medical staff to promoting social support for hospice care. Through graded diagnosis and referral systems in medical institutions to integrate medical resources and expand the range of hospice care services.
INTRODUCTION: Palliative care (PC) is a holistic philosophy of care that can only be obtained through the awareness of public and healthcare professionals, PC training and good integration into the health system. Depending on health system structures, there are differences in PC models and organisations in various countries. This study is designed to evaluate the current status of PC services in Turkey, which is strongly supported by national health policies.
METHODS: The data were collected through official correspondence with the Ministry of Health, Provincial Directorate of Health and hospital authorities. Numbers of patients who received inpatient PC, the number of hospital beds, diagnosis of disease, duration of hospitalisation, the first three symptoms as the cause of hospitalisation, opioid use, place of discharge and mortality rates were evaluated.
RESULTS: A total of 48,953 patients received inpatient PC support in 199 PC centres with 2,429 beds over a 26-month period. The most frequent diagnosis for hospitalisation was cancer (35%), and the most common symptom was pain (25%). Opioids were used in 26.7% of patients.
CONCLUSION: Steps should be taken for PC training and providing continuity through organisations outside the hospital and home care.
OBJECTIVES: A qualitative interpretive-systemic focus group study was conducted to examine the developmental and implementational underpinnings of Asia's first national Advance Care Planning (ACP) programme constituted in Singapore.
METHODS: 63 physicians, nurses, medical social workers, and allied health workers who actively rendered ACP were purposively recruited across seven major public hospitals and specialist centers.
RESULTS: Framework analysis revealed 19 themes, organized into 5 categories including Life and Death Culture, ACP Coordination, ACP Administration, ACP Outcomes, and Sustainability Shift. These categories and themes formed an Interpretive-Systemic Framework of Sustainable ACP, which reflects the socio-cultural, socio-political, and socio-spiritual contexts that influence ACP provision, highlighting the need to adopt a public health strategy for enhancing societal readiness for end-of-life conversations.
SIGNIFICANCE OF RESULTS: The Interpretive-Systemic Framework of Sustainable ACP underscores the importance of health policy, organizational structure, social discourse, and shared meaning in ACP planning and delivery so as to support and empower care decision-making among terminally ill Asian patients and their families facing mortality.
In a bid to slow the rate of spread of the virus, the Federal Government of Nigeria, on several occasions, imposed targeted lockdown measures in areas with rapid increase of Covid-19 cases. The states in which the federal government imposed the targeted lockdown included Lagos, Ogun, and the Federal Capital Territory in Abuja. Some States in the country imposed partial lockdown and closure of interstate boarders. Curfews have also been introduced in all the states nationwide. To alleviate the effects of the lockdown, the Federal Government of Nigeria rolled out palliative measures for targeted groups. However, lamentations have trailed the distribution of government palliatives by the masses. Citizens allege that the process of distribution of palliatives had been politicized.
BACKGROUND: The literature on the situation of palliative and end-of-life care in the Arab and Islamic world, including Egypt, is limited and does not present a clear picture of the cultural context. This report aims to portray the palliative and end-of-life care situation in Egypt, focusing on the nursing viewpoint. First, we describe health- and illness-related cultural, religious, and ethical issues. Second, we present an overview of the healthcare and nursing system in Egypt. Third, we discuss the situation of palliative and end-of-life care, highlighting the shortcomings of existing literature. Finally, we delineate country-specific recommendations to improve the palliative and end-of-life care situation at the level of policy, education, and research. Countries with similar healthcare, cultural, legal, religious, economic, or ethical contexts may benefit from the recommendations made in this study.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
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.