Objectives: To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life.
Design: Cross-sectional postbereavement survey.
Setting: Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany.
Participants: 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded.
Results: For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71).
Conclusions: Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements.
Trial registration number DRKS00011925.
Objectives: To analyse patterns of use and costs of unscheduled National Health Service (NHS) services for people in the last year of life.
Design: Retrospective cohort analysis of national datasets with application of standard UK costings.
Participants and setting: All people who died in Scotland in 2016 aged 18 or older (N=56 407).
Main outcome measures: Frequency of use of the five unscheduled NHS services in the last 12 months of life by underlying cause of death, patient demographics, Continuous Unscheduled Pathways (CUPs) followed by patients during each care episode, total NHS and per-patient costs.
Results: 53 509 patients (94.9%) had at least one contact with an unscheduled care service during their last year of life (472 360 contacts), with 34.2% in the last month of life. By linking patient contacts during each episode of care, we identified 206 841 CUPs, with 133 980 (64.8%) starting out-of-hours. People with cancer were more likely to contact the NHS telephone advice line (63%) ( 2 (4)=1004, p<0.001) or primary care out-of-hours (62%) ( 2 (4)=1924,p<0.001) and have hospital admissions (88%) ( 2 (4)=2644, p<0.001). People with organ failure (79%) contacted the ambulance service most frequently ( 2 (4)=584, p<0.001). Demographic factors associated with more unscheduled care were older age, social deprivation, living in own home and dying of cancer. People dying with organ failure formed the largest group in the cohort and had the highest NHS costs as a group. The cost of providing services in the community was estimated at 3.9% of total unscheduled care costs despite handling most out-of-hours calls.
Conclusions: Over 90% of people used NHS unscheduled care in their last year of life. Different underlying causes of death and demographic factors impacted on initial access and subsequent pathways of care. Managing more unscheduled care episodes in the community has the potential to reduce hospital admissions and overall costs.
INTRODUCTION: Care homes provide nursing and social care for older people who can no longer live independently at home. In the UK, there is no consistent approach to how information about residents' medical history, care needs and preferences are collected and shared. This limits opportunities to understand the care home population, have a systematic approach to assessment and documentation of care, identifiy care home residents at risk of deterioration and review care. Countries with standardised approaches to residents' assessment, care planning and review (eg, minimum data sets (MDS)) use the data to understand the care home population, guide resource allocation, monitor services delivery and for research. The aim of this realist review is to develop a theory-driven understanding of how care home staff implement and use MDS to plan and deliver care of individual residents.
METHODS AND ANALYSIS: A realist review will be conducted in three research stages.Stage 1 will scope the literature and develop candidate programme theories of what ensures effective uptake and sustained implementation of an MDS.Stage2 will test and refine these theories through further iterative searches of the evidence from the literature to establish how effective uptake of an MDS can be achieved.Stage 3 will consult with relevant stakeholders to test or refine the programme theory (theories) of how an MDS works at the resident level of care for different stakeholders and in what circumstances. Data synthesis will use realist logic to align data from each eligible article with possible context-mechanism-outcome configurations or specific elements that answer the research questions.
ETHICS AND DISSEMINATION: The University of Hertfordshire Ethics Committee has approved this study (HSK/SF/UH/04169). Findings will be disseminated through briefings with stakeholders, conference presentations, a national consultation on the use of an MDS in UK long-term care settings, publications in peer-reviewed journals and in print and social media publications accessible to residents, relatives and care home staff.
PROSPERO REGISTRATION NUMBER: CRD42020171323; this review protocol is registered on the International Prospective Register of Systematic Reviews.
On 2 January 2020, Singapore implemented preventive measures to minimise importation of COVID-19 cases after China reported its first case to the World Health Organisation on 31 December 2019, in what was to become a global pandemic. After confirming its first local case of COVID-19 on 23 January 2020, Singapore has adopted increasingly stringent containment measures, moving into mitigation mode when the number of cases escalated. Local hospitals have also instituted progressively stricter restrictions on visitation hours and the number of visitors. As of 28 May 2020, there were 33,249 confirmed cases of COVID-19, with 14,925 cases under observation, 18,294 cases discharged, 7 patients in critical condition and 23 deaths attributed to COVID-19.
Public health emergencies such as pandemics can put health systems in a position where they need to ration medical equipment and interventions because the resources available are not sufficient to meet demand. In public health management, the fair allocation of resources is a permanent and cross-sector issue since resources, and especially economic resources, are not infinite. During the COVID-19 pandemic resources need to be allocated under conditions of extreme urgency and uncertainty. One very problematic aspect has concerned intensive care medicine and age discrimination has been among the most hotly discussed issues, as age has been touted as a probable criterion for selection. In this paper we analyse some documents originating from scientific societies and medical associations, mainly related to EU sphere and available in English, French, Spanish and Italian (Switzerland, Spain, Belgium, France, England and Italy), concerning the criteria for admission to the intensive care units. We highlights how, in most of these documents, it is explicitly stated that “age itself” is not a criterion for patient selection. Our conclusion is that these criteria should be defined in advance of a crisis situation and be grounded in clinical indicators. Establishing “cut-off” policies with regard to criteria such as age or chronic disability is definitely an unjustifiable form of discrimination even in the context of a public health emergency.
Context: The development of palliative care services is a public health priority. The Japanese Cancer Control Act has been promoting palliative care services nationwide for over 10 years.
Objectives: To evaluate long-term changes in the structure and processes of hospital palliative cancer care services nationwide.
Methods: This was an observational study using three representative questionnaire surveys between 2008 and 2018. The questionnaire consisted of domains on the structure and process regarding hospital palliative cancer care services. The changes over time were assessed using the MacNemar test. The differences between groups, namely community hospitals and designated cancer hospitals, were determined using 2 tests.
Results: We analyzed changes over time from 281 designated cancer hospitals and compared the services between 1395 community hospitals and 380 designated cancer hospitals. The development of the structure and processes for designated cancer hospital's palliative cancer care services was greater for 10 years including the number of Palliative Care Consultation Teams (PCTs) with more than 50 patient referrals annually (from 2010 to 2018: 76.2% to 85.4%, P < 0.001). The palliative cancer care services of community hospitals were poorly prepared compared with designated cancer hospitals in 2018, such as the “direct medical care by any member of the Palliative Care Consultation Team at least 3 times a week (41.7% vs. 81.3%; P < 0.001).
Conclusion: Hospital palliative cancer care services in designated cancer hospitals have developed significantly from 2008 to 2018. Building a system to promote palliative care services in community hospitals is a challenge for the next decade.
La question du sens de la vie se pose autant au jeune qu’à l’ancien, dès lors qu’il expérimente sa finitude par une quelconque expérience de mort. Pour explorer la question avec un certain recul, étudions la mort et le suicide à différentes échelles. Si nous devions comparer le suicide à une des morts cellulaires, peut-être que nous le comparerions à l’apoptose en tant qu’elle est réalisée par la cellule elle-même. À l’échelle animale, la survie suit la loi du plus fort ou du plus intelligent. À l’échelle anthropologique, les civilisations survivent dans l’illusion de leur immortalité. Il est certain que le suicide est un acte des plus intimes et peut, à cet égard, être considéré comme un acte de liberté puisqu’il soulage la perception du corps de toute loi physique, la perception étant abolie par le décès. La fascination pour le suicide s’appuie sur une exploration intellectuelle, une recherche de réponse absolue en opposition à tout relativisme, qui paradoxalement va prendre corps dans l’anéantissement. En période de pandémie et de confinement, l’humanité fait l’expérience de sa finitude. Le confinement a réinstallé un sentiment de solitude dans une société qui vit d’une hypercommunication permanente. Dans ce texte, l’auteur démontre que le suicide doit être évité parce qu’il est un non-sens autant pour l’individu que pour la collectivité. Alors, vivre le handicap tout autant que la vieillesse devrait être plus valorisé, et des politiques de santé publique contre les causes menant au suicide devraient devenir des priorités de l’État. Finalement, loin d’une pathologisation du suicide, la question de reconnaître juridiquement le droit au suicide (non assisté) pour les personnes le réussissant doit être posée.
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.
On March 11, 2020 the World Health Organization classified COVID-19, caused by Sars-CoV-2, as a pandemic. Although not much was known about the new virus, the first outbreaks in China and Italy showed that potentially a large number of people worldwide could fall critically ill in a short period of time. A shortage of ventilators and intensive care resources was expected in many countries, leading to concerns about restrictions of medical care and preventable deaths. In order to be prepared for this challenging situation, national triage guidance has been developed or adapted from former influenza pandemic guidelines in an increasing number of countries over the past few months. In this article, we provide a comparative analysis of triage recommendations from selected national and international professional societies, including Australia/New Zealand, Belgium, Canada, Germany, Great Britain, Italy, Pakistan, South Africa, Switzerland, the United States, and the International Society of Critical Care Medicine. We describe areas of consensus, including the importance of prognosis, patient will, transparency of the decision-making process, and psychosocial support for staff, as well as the role of justice and benefit maximization as core principles. We then probe areas of disagreement, such as the role of survival versus outcome, long-term versus short-term prognosis, the use of age and comorbidities as triage criteria, priority groups and potential tiebreakers such as 'lottery' or 'first come, first served'. Having explored a number of tensions in current guidance, we conclude with a suggestion for framework conditions that are clear, consistent and implementable. This analysis is intended to advance the ongoing debate regarding the fair allocation of limited resources and may be relevant for future policy-making.
Non-communicable chronic diseases (NCCDs) are the main cause of morbidity and mortality globally. Demographic aging has resulted in older populations with more complex healthcare needs. This necessitates a multilevel rethinking of healthcare policies, health education and community support systems with digitalization of technologies playing a central role. The European Innovation Partnership on Active and Healthy Aging (A3) working group focuses on well-being for older adults, with an emphasis on quality of life and healthy aging. A subgroup of A3, including multidisciplinary stakeholders in health care across Europe, focuses on the palliative care (PC) model as a paradigm to be modified to meet the needs of older persons with NCCDs. This development paper delineates the key parameters we identified as critical in creating a public health model of PC directed to the needs of persons with NCCDs. This paradigm shift should affect horizontal components of public health models. Furthermore, our model includes vertical components often neglected, such as nutrition, resilience, well-being and leisure activities. The main enablers identified are information and communication technologies, education and training programs, communities of compassion, twinning activities, promoting research and increasing awareness amongst policymakers. We also identified key 'bottlenecks': inequity of access, insufficient research, inadequate development of advance care planning and a lack of co-creation of relevant technologies and shared decision-making. Rethinking PC within a public health context must focus on developing policies, training and technologies to enhance person-centered quality life for those with NCCD, while ensuring that they and those important to them experience death with dignity.
The world is contending to contain the outbreak of coronavirus which has now resulted to 36,571 mortalities out of the 754,948 confirmed cases in 202 countries, areas or territories as at March 31, 2020. Pandemics are usually characterized by a sense of panic and uncertainties. Even though global preparedness and emergency procedures have been enacted, the uncertainties surrounding this pandemic raise considerable questions to their adherence. Widespread restrictions of varying degrees have been placed on individuals, groups, communities, cities or even whole regions. These restrictions ab initio are in contradiction to civil and human rights. These measures, which are now widely implemented in many regions and countries of the globe, have thrown up fresh ethical questions. Between human health and human rights, which takes primacy?
During the coronavirus disease 2019 (COVID-19) pandemic, principles from both clinical and public health ethics cue clinicians and healthcare administrators to plan alternatives for frail older adults who prefer to avoid critical care, and for when critical care is not available due to crisis triaging. This article will explore the COVID-19 Ethical Decision Making Framework, published in British Columbia (BC), Canada, to familiarize clinicians and policy makers with how ethical principles can guide systems change, in the service of frail older adults. In BC, the healthcare system has launched resources to support clinicians in proactive advance care planning discussions, and is providing enhanced supportive and palliative care options to residents of long-term care facilities. If the pandemic truly overwhelms the healthcare system, frailty, but not age alone, provides a fair and evidence-based means of triaging patients for critical care and could be included into ventilator allocation frameworks.
OBJECTIVES: To estimate past trends and future projection of adult palliative care needs in Malaysia.
METHODS: This is a population-based secondary data analysis using the national mortality registry from 2004 to 2014. Past trend estimation was conducted using Murtagh's minimum and maximum methods and Gómez-Batiste's method. The estimated palliative care needs were stratified by age groups, gender and administrative states in Malaysia. With this, the projection of palliative care needs up to 2030 was conducted under the assumption that annual change remains constant.
RESULTS: The palliative care needs in Malaysia followed an apparent upward trend over the years regardless of the estimation methods. Murtagh's minimum estimation method showed that palliative care needs grew 40% from 71 675 cases in 2004 to 100 034 cases in 2014. The proportion of palliative care needs in relation to deaths hovered at 71% in the observed years. In 2030, Malaysia should anticipate the population needs to be at least 239 713 cases (240% growth from 2014), with the highest needs among age group = 80-year-old in both genders. Sarawak, Perak, Johor, Selangor and Kedah will become the top five Malaysian states with the highest number of needs in 2030.
CONCLUSION: The need for palliative care in Malaysia will continue to rise and surpass its service provision. This trend demands a stepped-up provision from the national health system with advanced integration of palliative care services to narrow the gap between needs and supply.
The lack of integration between public health approaches, cancer care and palliative and end-of-life care in the majority of health systems globally became strikingly evident in the context of the coronavirus disease 2019 (COVID-19) pandemic. At the same time, the collapse of the boundaries between these domains imposed by the pandemic created unique opportunities for intersectoral planning and collaboration. While the challenge of integration is not unique to oncology, the organisation of cancer care and its linkages to palliative care and to global health may allow it to be a demonstration model for how the problem of integration can be addressed. Before the pandemic, the large majority of individuals with cancer in need of palliative care in low- and middle-income countries and the poor or marginalised in high-income countries were denied access. This inequity was highlighted by the COVID-19 pandemic, as individuals in impoverished or population-dense settings with weak health systems have been more likely to become infected and to have less access to medical care and to palliative and end-of-life care. Such inequities deserve attention by government, financial institutions and decision makers in health care. However, there has been no framework in most countries for integrated decision-making that takes into account the requirements of public health, clinical medicine and palliative and end-of-life care. Integrated planning across these domains at all levels would allow for more coordinated resource allocation and better preparedness for the inevitability of future systemic threats to population health.
BACKGROUND: General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, and falling GP numbers. A 'public health palliative care' approach, defined as "working with communities to improve people's experience of death, dying and bereavement", is gaining momentum. 'Compassionate communities' is one example, with a focus on linking professional health carers with supportive community networks. Primary care is central to the approach, which has been incorporated into United Kingdom GP palliative care guidance. No research to date, however, has investigated GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of a public health approach to palliative care, and compassionate communities.
METHODS: GPs working in the United Kingdom were recruited through university teaching and research networks using snowball sampling. Purposive sampling ensured wide representation of gender, level of experience and practice populations. Semi-structured, digitally audio-recorded interviews were conducted with nine GPs. Interviews were transcribed verbatim, and thematic analysis was undertaken, informed by a qualitative descriptive methodology. Interviews continued until data saturation was reached.
RESULTS: Most participants were unfamiliar with the term 'compassionate communities', but recognised examples within their practice. Three major themes with seven subthemes were identified: 1) Perceived potential of compassionate communities, including: 'maximising use of existing community services'; 'influencing health outside of healthcare'; and 'combatting taboo', 2) Perceived challenges of compassionate communities, including: 'patient safety'; 'limited capacity of the community'; 'limited capacity of general practice', and 'applicability of public health to palliative care', and 3) The role of the GP in compassionate communities.
CONCLUSIONS: GPs recognised the importance of the wider community in caring for palliative care patients, however most were unfamiliar with the compassionate community approach. Participants held differing views regarding the application of the model, and the position of general practice within this. Further research into the approach's practical implementation, and exploring the views of other key stakeholders, would help establish the feasibility of compassionate communities in practice, and guide its future application.
OBJECTIVES: Hospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US-Mexico border region.
DESIGN: This qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis.
SETTING: The HC programme was situated at a local home health agency, located in rural Southern California, USA.
PARTICIPANTS: Twenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study.
RESULTS: Conversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient's known EOL wishes; (2) FCG-physician EOL communication; (3) the patient's deteriorating health and (4) home as the place for death.
CONCLUSIONS: HC patients' FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient's EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients' medical status along with information about HC.
Objective: To engage young adults (18–35 years of age) with life-limiting neuromuscular conditions, their parents, and health and community providers in the development of a public health approach to palliative care. A public health approach protects and improves health and wellness, maximises the quality of life when health cannot be restored and improves the quality, scope and accessibility of age-appropriate care and services.
Methods: Group concept mapping (GCM) was used to determine the most important priorities for these young adults. GCM involves three district phases: (1) brainstorming ideas, (2) sorting and rating ideas based on level of importance and (3) analysing and interpreting concepts maps. Online software was used to collect information for phases 1 and 2 and develop concept maps. In phase 3, a face-to-face workshop, participants analysed and interpreted the concept maps. The combination of online and face-to-face research activities offered the needed flexibility for participants to determine when and how to participate in this research.
Results: Through this three-phase patient engagement strategy, participants generated 64 recommendations for change and determined that improvements to programming, improvements to funding and creating a continuum of care were their most important priorities. Five subthemes of these three priorities and development of the concept map are also discussed.
Conclusion: This research demonstrates the unique perspectives and experiences of these young adults and offers recommendations to improve services to enhance their health and well-being. Further, these young adults were integral in the development of recommendations for system changes to match their unique developmental needs.
Background: Communities have limited understanding of palliative care, creating barriers to informed choice around consideration of a full range of care options in the event of serious illness. Few empirically tested interventions are available to educate community about palliative care, and ultimately improve timely access to these services.
Aim: To test the acceptability (primary outcome), and feasibility of a narrative approach to public health communication seeking to improve attitudes to possible access to palliative care in the event of serious illness.
Design: Randomised phase II trial with six parallel experimental conditions. Outcomes tested included measures of acceptability, feasibility and change in attitudes to possible access to palliative care post-intervention. Contrasts planned for exploratory testing included format, message content and narrator.
Setting/participants: Community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups.
Results: A narrative approach to public health communication was found to be acceptable to community members, and feasible to deliver online. Exploratory data suggested it immediately improved attitudes towards possible access to palliative care in the event of serious illness, with the narrative detailing a description of the evidence delivered by a healthcare professional appearing to be the most promising strategy.
Conclusions: This study provides preliminary data to inform a future, longitudinal trial evaluating effectiveness and ultimately other evidence-based, public health approaches to improve community engagement with palliative care. Further studies are required to confirm the generalisability of findings to a broader representative sample and other settings including internationally.