Our choice for care at the end of our lives is constrained by many factors, including the options available to us, our capacity to choose and the social structures that constrain our options and therefore our choices. Working with the interaction between personal agency and social constraints is a core public health activity. An intentional public health approach to palliative and end-of-life care can elucidate the direct relationship between our social circumstances and the quality of our end of life and uncover the implications of structural inequity for end-of-life choice. The approach reorients systems and settings to achieve accessible and equitable palliative and end of-life care for all, and identifies contributions that all jurisdictions, settings, organisations, sectors and communities can make to improving end-of-life care outcomes. Frameworks that support this shift in practice and policy are however in their infancy. Implementation frameworks that can structure and guide ‘how’ to translate public health palliative care concepts into sustainable practice are needed. This paper reports on an evidence-based Australian public health palliative care framework designed to achieve this.
Depuis le début des années 2000, les soins palliatifs se sont considérablement développés au Québec et ailleurs dans le monde. Toutefois, avec les bouleversements démographiques qui transforment le paysage social de la plupart des pays occidentaux, le modèle actuel des soins palliatifs modernes pourrait être insuffisant pour faire face aux besoins grandissants de la population vieillissante. L'objectif de cet article est d'offrir un aperçu d'une vision complémentaire aux soins palliatifs modernes : le modèle des Communautés compatissantes. Développée par Allan Kellehear dans les années 2000, l'approche des Communautés compatissantes conçoit la fin de vie en tant qu'enjeu de santé publique, s'inspire de la promotion de la santé et propose un modèle sociocommunautaire aux soins de fin de vie. Dans cet article, les principaux fondements de l'approche des Communautés compatissantes seront présentés et illustrés par des exemples internationaux et locaux. Les défis et l'avenir de cette approche seront également évoqués.
BACKGROUND: Global annual deaths are rising. It is essential to examine where future deaths may occur to facilitate decisions regarding future service provision and resource allocation.
AIMS: To project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends.
METHODS: Population-based trend analysis of place of death for people that died in Scotland (2004-2016) and projections using simple linear modelling (2017-2040); Transparent Expert Consultation to prioritise recommendations in response to projections.
RESULTS: Deaths are projected to increase by 15.9% from 56,728 in 2016 (32.8% aged 85+ years) to 65,757 deaths in 2040 (45% aged 85+ years). Between 2004 and 2016, proportions of home and care home deaths increased (19.8-23.4% and 14.5-18.8%), while the proportion of hospital deaths declined (58.0-50.1%). If current trends continue, the numbers of deaths at home and in care homes will increase, and two-thirds will die outside hospital by 2040. To sustain current trends, priorities include: 1) to increase and upskill a community health and social care workforce through education, training and valuing of care work; 2) to build community care capacity through informal carer support and community engagement; 3) to stimulate a realistic public debate on death, dying and sustainable funding.
CONCLUSION: To sustain current trends, health and social care provision in the community needs to grow to support nearly 60% more people at the end-of-life by 2040; otherwise hospital deaths will increase.
OBJECTIVES: (1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia.
DESIGN: A realist review.
DATA SOURCES: MEDLINE, EMBASE, CINAHL and grey literature.
ANALYSIS: We conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care.
RESULTS: We identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes.
CONCLUSION: This review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia.
INTRODUCTION: Palliative care is a clinically and cost-effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions.
METHODS AND ANALYSIS: This is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies.
ETHICS AND DISSEMINATION: Ethics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18-032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19-2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media.
TRIAL REGISTRATION NUMBER: ISRCTN15727711.
Asbestos-related diseases (ARDs) are incurable but entirely preventable. Due to India's continuing use of asbestos, ARD patients will increase to a high number in the next three to four decades. This will increase the burden on palliative care system which is in nascent stage presently. Palliative care is the mainstay of the management of ARDs. Unfortunately, the burden on palliative care is likely to increase due to multiple factors contributed by India's demographic and economic changes. In the near future, there will be at least 12.5 million ARD patients and 1.25 million asbestos-related cancer patients worldwide, and half of these will be in India. It is high time to introspect about our ability to engage with this future problem. The paper also discusses the organization of this future problem of ARDs and possible action points toward future access to palliative care for ARD patients.
Au travers de six futurs fictionnels, construits par sous-détermination, des spécialistes de diverses disciplines s'interrogent sur le champ des possibles dans le domaine de la santé, par-delà les seuls aspects technologiques et organisationnels, ainsi que sur les enjeux éthiques que soulèvent ces perspectives.
Frailty is an emerging global health burden, with major implications for clinical practice and public health. The prevalence of frailty is expected to rise alongside rapid growth in the ageing population. The course of frailty is characterised by a decline in functioning across multiple physiological systems, accompanied by an increased vulnerability to stressors. Having frailty places a person at increased risk of adverse outcomes, including falls, hospitalisation, and mortality. Studies have shown a clear pattern of increased health-care costs and use associated with frailty. All older adults are at risk of developing frailty, although risk levels are substantially higher among those with comorbidities, low socioeconomic position, poor diet, and sedentary lifestyles. Lifestyle and clinical risk factors are potentially modifiable by specific interventions and preventive actions. The concept of frailty is increasingly being used in primary, acute, and specialist care. However, despite efforts over the past three decades, agreement on a standard instrument to identify frailty has not yet been achieved. In this Series paper, we provide an overview of the global impact and burden of frailty, the usefulness of the frailty concept in clinical practice, potential targets for frailty prevention, and directions that need to be explored in the future.
Frailty is a complex age-related clinical condition characterised by a decline in physiological capacity across several organ systems, with a resultant increased susceptibility to stressors. Because of the heterogeneity of frailty in clinical presentation, it is important to have effective strategies for the delivery of care that range across the continuum of frailty severity. In clinical practice, we should do what works, starting with frailty screening, case identification, and management of frailty. This process is unarguably difficult given the absence of an adequate evidence base for individual and health-system interventions to manage frailty. We advocate change towards individually tailored interventions that preserve an individual's independence, physical function, and cognition. This change can be addressed by promoting the recognition of frailty, furthering advancements in evidence-based treatment options, and identifying cost-effective care delivery strategies.
Introduction: Varying intensity of advance care planning (ACP) interventions at the population level has not been compared among seriously ill patients in primary care. This project will implement, test, and disseminate real-world scalable ACP interventions among primary care clinics across three University of California Health systems. The three ACP interventions are (1) distribution of an advance directive (AD) with targeted ACP messaging, (2) the AD, messaging, plus prompting patients to engage with the Prepare For Your Care website (PREPARE), and (3) the AD, messaging, PREPARE, plus Care Coordinator engagement with patients and clinicians.
Methods: We will identify a population cohort of seriously ill primary care patients and implement the ACP interventions using electronic health record (EHR) patient portals and postal mailings. Forty-five clinics across the three health systems will be cluster randomized to one of the three ACP interventions. The primary outcome for the population cohort is AD or Physician Orders for Life-Sustaining Treatment documentation in the EHR. A subset of the population cohort will be surveyed to assess patient-centered outcomes, including care consistent with goals at baseline, 12 months, and 24 months. Caregivers will be interviewed if patients are unable to be surveyed or die. ACP documentation, goal concordant care, and among decedents, health care utilization will be compared among intervention arms.
Study Implementation: Challenges and Contributions: The project is guided by a Study Advisory Group and Community Advisory Groups at each site to ensure rigorous patient-centered methods and consistency of implementation. Intervention fidelity will be evaluated using the Reach, Efficacy, Adoption, Implementation, and Maintenance (RE-AIM) framework. Challenges to implementation of this three-site health system trial and to intervention fidelity stem from site/clinic/system cultures, increasing attention to end-of-life care from payers and regulators, and growing pressures by health systems to implement ACP interventions. Stakeholder engagement is required to ensure consistent interventions across sites.
Providing care to cancer patients in resource-poor settings often demands complex trade-offs regarding resource allocation. It is estimated that over 60% of all cancer deaths worldwide occur in low- and middle-income countries, where channels to care and appropriate symptom management interventions are overstressed or obsolete. Concepts of distributive justice underlie much of global health policy. As appetites for expanding global palliative care services increase, so do questions of fair and culturally appropriate distribution. The ethical principle of distributive justice underpins questions of resource allocation at a fundamental level. One of the most challenging concepts for health care workers immersing in cross-cultural contexts is the idea that ethics are somewhat malleable; they shape and are shaped by the unique sociopolitical, economic, intracultural, and power dynamics of a particular setting. In this article, we use the case of a young woman diagnosed with terminal cancer in an underserved community in rural Uganda to illustrate the conflicting concepts of fairness, which dictate distribution of scarce resources in low- and middle-income countries. Notions of distributive justice vary across cultural, societal, and even individual norms, with some definitions allowing for discrimination based on merit or need. Resource allocation in the absence of cultural humility or a genuine willingness to understand decision-making priorities in a given culture can contribute to inequity and may have harmful consequences.
Background: In Canada, there is a growing need to develop community-based, culturally appropriate palliative care for Indigenous people living in First Nations communities. The public health approach to palliative care, which emphasizes community-based initiatives, is especially relevant in First Nations communities because care is grounded in their distinct social and cultural context. Central to the public health approach are educational strategies that strengthen communities' capacity to care for their vulnerable members as they die. This paper presents community-based research conducted with First Nations communities in Canada that aimed to assess and address local palliative care educational needs to improve community capacity in palliative care.
Methods: Participatory action research (PAR) was conducted with four First Nations communities in Canada over a six-year period (2010-2016). The research occurred in three phases. Phase 1: focus groups, interviews and surveys were employed to assess community specific needs and resources. Phase 2: recommendations were developed to guide the PAR process. Phase 3: educational resources were created to address the identified educational needs. These resources were implemented incrementally over 4 years. Ongoing process evaluation was employed, and revisions were made as required.
Results: Educational needs were identified for patients, families, community members and internal and external health care providers. A wide and comprehensive range of educational resources were created to address those needs. Those culturally appropriate educational resources are available in a very accessible and useable workbook format and are available for use by other Indigenous people and communities.
Conclusions: This research provides an example of the public health approach and offers implementation strategies around palliative care education. This paper contributes to the international literature on the public health approach to palliative care by presenting a case study from Canada that includes: conducting a culturally appropriate assessment of educational needs, creating recommendations, facilitating development and implementation of educational resources in the community to improve community capacity in palliative care.
CONTEXT: International consensus on indicators is necessary to standardize the global assessment of palliative care (PC) development.
OBJECTIVES: To identify the best indicators to assess current national-level PC development.
METHODS: Experts in PC development were invited to rate 45 indicators organized by domains of the WHO Public Health Strategy in a two-round RAND/UCLA modified Delphi process. In the first round, experts rated indicators by relevance, measurability, and feasibility (1-9). Ratings were used to calculate a Global-Score (1-9). Indicators scoring >7 proceeded to the second round for fine-tuning of Global-Scores. Median, Confidence Interval (CI), Content Validity Index (I-CVI), and Disagreement Index were calculated. Indicators scoring a lower limit 95% CI 7 and an I-CVI 0·30 were selected.
RESULTS: Twenty-four experts representing five continents and several organizations, completed the study. Twenty-five indicators showed a high content validity and level of agreement. Policy indicators (n=8) included the existence of designated staff in the national Ministry of Health, the inclusion of PC services in the basic health package and in the primary care level list of services. Education indicators (n=4) focused on processes of official specialization for physicians, inclusion of teaching at the undergraduate level, and PC professorship. Use of medicines indicators (n=4) consisted of opioid consumption, availability and prescription requirements. Services indicators (n=6) included number and type of services for adults and children. Additional indicators for professional activity (n=3) were identified.
CONCLUSION: The first list including 25 of the best indicators to evaluate PC development at a national-level has been identified.
CONTEXT: The need for increased use and earlier initiation of palliative home care has been advocated by several international organizations.
OBJECTIVES: To investigate time trends in the use and timing of initiating palliative home care support (PHCS).
METHODS: Observational study using routinely collected population-level databases linked with health claims data for the entire population living at home that died from diseases indicative of palliative care needs in Belgium between 2010 and 2015 (n=230,704). Trends and trends by cause of death and age were measured through changes over time in prevalence of use of PHCS. Rates were standardized for age, sex and cause of death distribution in 2010. The median number of days before death when PHCS was initiated was calculated for each year.
RESULTS: Uptake of PHCS increased from 31.7% to 34.9% between 2010 and 2015. Trends were similar in size for all groups, except for people who died from dementia (smallest increase with 1.9 percent-point). The timing of initiating PHCS advanced from 41 days to 46 days before death, with the smallest increase observed among people who died from dementia (+2.5 days). The proportion of people receiving PHCS only in the last week of life changed from 15.3% to 13.9%.
CONCLUSION: This population-level study found a slight trend towards more and earlier initiation of PHCS between 2010 and 2015. However, uptake of PHCS remained below estimated needs in the population and the proportion of people receiving PHCS very late in life remained stable over time.
Interest in the potential for public health and palliative care to work together is now widely established. Based on a mapping review of existing literature, we describe for the first time the ways in which public health has entered palliative care policy and practice and how this has been specifically articulated. We then go on to pursue analytical and critical lines of enquiry that are largely absent from the existing literature. We do this in three ways: (i) by considering why the link between public health and palliative care has become so ubiquitous within palliative care policy; (ii) by establishing how this has been constructed; and (iii) by exploring public health as a 'reference discipline' from which its 'secondary deployment' can become embedded inside another disciplinary field. From this, we develop a range of critical perspectives on the relationship between public health and palliative care by scrutinising its claims of utility and effectiveness and questioning the strength of the interdisciplinary interaction between the two disciplines. We see their relationship in a 'cross disciplinary' context which is still largely symbolic and tactical in nature. We conclude by considering the significance of these insights for policy and practice, with two possible scenarios. If the use of public health is essentially figurative and its resources are not unique, the particular and exclusive use of the term becomes insignificant. Progressive and effective policy and practice is possible, independent of any explicit public health label. If however public health is considered to have intrinsic and definable worth, we suggest that this currently asymmetrical association needs to be significantly developed with much higher levels of theoretical, practical and critical engagement between the two disciplines. Such work would result in more reflective and robust policy and practice.
Designing and implementing population-based systems of care that address the social determinants of health, take action on multiple levels, and are guided by evidence-based principles is a pressing priority, and an international challenge. Aging persons are a priority demographic whose health needs span physical, psychosocial and existential care domains, increase in the last year of life, are often poorly coordinated and therefore remain unmet. Compassionate communities (CCs) are an example of a public health approach that fully addresses the holistic healthcare needs of those who are aging and nearing end of life. The sharing of resources, tools, and innovations among implementers of CCs is occurring globally. Although this can increase impact, it also generates complexity that can complicate robust evaluation. When initiating population health level projects, it is important to clearly define and organize concepts and processes that are proposed to influence the health outcomes. The Health Impact Change Model (HICM) was developed to unpack the complexities associated with the implementation and evaluation of a Canadian CC intervention. The HICM offers utility for citizens, leaders and decision-makers who are engaged in the implementation of population health level strategies or other social approaches to care, such as compassionate cities and age or dementia-friendly communities. The HICM's concepts can be adapted to address a community's healthcare context, needs, and goals for change. We share examples of how the model's major concepts have been applied in the development, evaluation and spread of a complex CC approach.
BACKGROUND: A public health approach to palliative care supports community-dwelling adults with advanced illness. A better understanding of successful community-based palliative care programmes and partnerships is needed to expand community-based services for ageing populations.
AIMS: This study describes two organisations in two different countries that provide health and social services to community-dwelling adults with advanced illness.
METHODS: Unstructured key-informant interviews and observational data were collected at the Christian Medical College's College of Nursing Community Health Programme (Vellore, India) and at Phinney Neighborhood Association Village (Seattle, Washington, USA).
FINDINGS: College of Nursing Community Health Programme nurses work with volunteer community health workers to identify and provide client-focused support to ensure quality-of-life. The Phinney Neighborhood Association Village is a volunteer-led organisation that provides social support. Both serve community-dwelling adults with advanced illness.
CONCLUSION: Partnerships between healthcare organisations and community volunteers support a public health approach to community-based palliative care.
CONTEXT: Palliative Care advocates argue that service implementation is feasible in all settings. Yet, services have developed patchily in low and middle-income settings. Beyond Human Development Index indicators, there has been limited engagement with the broader development challenges facing nations tasked with implementing palliative care.
OBJECTIVE: To describe how indicators of national development relate to levels of palliative care services in 207 countries around the world.
METHODS: Ecological study to identify relationships between potential predictor variables and the level of national palliative care development. A total of 28 predictor variables from the following 6 domains were selected using hypothesised relationships with levels of palliative care development: disease demographics, socioeconomics, health systems, politics, demographics and economics. The outcome variable was level of national palliative care development on a six-point scale. Spearman's correlation was used to measure the strength of the association.
RESULTS: Twenty-six out of 28 variables were statistically significantly associated with levels of palliative care development in 207 countries. Palliative care is more developed in countries with high: percentage of deaths from non-communicable disease; population proportion aged 65+; gross national income and tourism. Development is lower in countries with high levels of: political corruption; infant mortality; deaths by infectious diseases; and weak democracy. Prevalence of under-nourishment and levels of private health expenditure were not significantly associated with palliative care development.
CONCLUSION: Palliative care development is highly consistent with broader national development indicators. It is less in countries where sudden deaths are more likely and benefits from palliative care provision are likely to be very limited. In such countries, resources may be prioritised towards life prolonging therapies and key aspects of palliative care need only be implemented prior to fully integrated palliative services. Findings suggest that there may be a 'tipping point' in societies, where the relative need for life-prolonging therapies becomes less than the need for integrated palliative care services.
BACKGROUND: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported.
AIM: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature.
DESIGN: An integrative study design was undertaken using systematic methods.
DATA SOURCES: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms.
RESULTS: two quantitative, two qualitative and two mixed method studies were identified (n = 6). All community initiatives identified were professionally led, although three has consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial.
CONCLUSIONS: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.
Palliative care is recognised as a fundamental component of Universal Health Coverage (UHC), which individual countries, led by the United Nations and the WHO, are committed to achieving worldwide by 2030-Sustainable Development Goal (SDG) 3.8. As the incidence of non-communicable diseases (NCD) in low-income and middle-income countries (LMICs) increases, their prevention and control are the central aspects of UHC in these areas. While the main focus is on reducing premature mortality from NCDs (SDG 3.4), palliative care is becoming increasingly important in LMICs, in which 80% of the need is found. This paper discusses the challenges of providing comprehensive NCD management in LMICs, the role of palliative care in addressing the huge and growing burden of serious health-related suffering, and also its scope for leveraging various aspects of primary care NCD management. Drawing on experiences in India and Nepal, and particularly a project on the India-Nepal border in which palliative care, community health and primary care-led NCD management are being integrated, we explore the synergies arising and describe a model where palliative care is integral to the whole spectrum of NCD management, from promotion and prevention, through treatment, rehabilitation and palliation. We believe this model could provide a framework for integrated NCD management more generally in rural India and Nepal and also other LMICs as they work to make NCD management as part of UHC a reality.