BACKGROUND: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people.
METHODS: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases.
RESULTS: Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were 'outsiders,' the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health.
CONCLUSION: These end-of-life care service models operated in a space between the healthcare system and the person's life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact.
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.
In light of the COVID-19 pandemic, many healthcare systems are experiencing an increased demand for palliative care (PC). To meet this challenge, the PC team at Cleveland Clinic designed an enterprise-wide response plan organized around 4 domains: staff (educational resources and tools), stuff (medications and supplies), space (recommendations for optimizing physical space and facilities), and systems to facilitate high-quality PC delivery to patients. To mitigate isolation during end-of-life care, the Clinic offers “compassionate exceptions” to strict visitation policies, provides personal protective equipment to visitors of these patients, and facilitates virtual visitation via electronic devices.
Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution.
Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care.
Design: Scoping review
Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement.
Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home.
Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
Purpose: Following the development of a service that consisted of a “single point of contact” to coordinate end-of-life care (EoLC), including EoLC facilitators and an urgent response team, we aimed to explore whether the provision of coordinated EoLC would support patients being cared or dying in their preferred place and avoid unwanted hospital admissions.
Design/methodology/approach: Using a realist evaluation approach, the authors examined “what worked for whom, how, in what circumstances and why”. Multiple data were collected, including activity/performance indicators, observations of management meetings, documents, satisfaction survey and 30 interviews with service providers and users.
Findings: Advance care planning (ACP) increased through the first three years of the service (from 45% to 83%) and on average 74% of patients achieved preferred place of death. More than 70% of patients avoided an emergency or unplanned hospital admission in their last month of life. The mechanisms and context identified as driving forces of the service included: 7/7 single point of contact; coordinating services across providers; recruiting and developing the workforce; understanding and clarifying new roles; and managing expectations.
Research limitations/implications: This was a service evaluation and the outcomes are related to the specific context and mechanisms. However, findings can be transferable to similar settings.
Practical implications: “Single point of contact” services that offer coordinated EoLC can contribute in supporting people to be cared and die in their preferred place.
Originality/value: This paper provides an evaluation of a novel approach to EoLC and creates a set of hypotheses that could be further tested in similar services in the future.
Background: A community palliative care service (CPCS) identified its after-hours support as sub-optimal in avoiding acute hospitalisation and supporting patients to remain at home. It created and conducted a pilot of an extended hours palliative care service (EHPCS) using current resources.
Aims: To evaluate the efficacy of an extended hours palliative care service pilot.
Methods: Retrospective chart review of after-hours calls taken before the trial, usual care, was undertaken. During the trial, quantitative data was gathered of the outcome of each after-hours call, including outcomes of occasion of service, reason for and length and times of calls.
Findings: The extended hours palliative care service, compared with usual care, showed an almost 50% decrease in acute hospitalisation, nearly doubled after-hours palliative care unit admission and a 17% increase in patients staying in their home. EHPCS was positively received by CPCS staff, despite cost and workforce impact.
Conclusions: EHPCS can positively impact on reducing avoidable hospitalisations and facilitate palliative care patients to be in their preferred place of care.
L’objectif de l’étude est d’identifier les freins et les leviers à la mise en place de la démarche palliative en EHPAD. C’est une étude ancillaire. Nous avons mené une enquête qualitative par entretiens semi-directifs auprès de médecins coordonnateurs d’EHPAD en Lorraine. Le recueil de données a débuté en janvier 2018 et s’est achevé en juin 2018. Les verbatim ont été analysés par théorisation ancrée. Onze médecins coordonnateurs ont participé à notre enquête. L’analyse met en évidence des contraintes structurelles et conjoncturelles propres à l’EHPAD dont l’absence de permanence médicale et infirmière, les limites des moyens matériels et personnels, ainsi que la possibilité des EHPAD intra-hospitaliers de s’affranchir de ces contraintes. La sensibilisation et la formation des acteurs de la prise en soins ont été identifiées comme des leviers majeurs dans la prise en charge palliative. À l’inverse, le manque de formation est apparu comme un obstacle. L’intervention des équipes ressources hospitalisation à domicile et équipe mobile de soins palliatifs est décrite comme un appui primordial. L’analyse a montré que l’organisation et la coopération des différents acteurs est un enjeu majeur pour la mise en place de la démarche palliative. Les dispositifs de personne de confiance et directives anticipées sont mal utilisés et ne sont d’aucune aide à la démarche palliative dans les EHPAD. Ainsi, la majorité des freins identifiés par l’enquête sont les contraintes structurelles et le manque de formation. Le principal levier à développer semble être celui de la formation, aux soins palliatifs et à l’utilisation des différents outils crées pour contourner les contraintes structurelles.
L’HAD permet de prodiguer au domicile des soins lourds et techniques et/ou requérant une importante coordination pluridisciplinaire, non réalisables par les seuls professionnels de ville, dans des conditions de sécurité et de qualité comparables à celles d’un hébergement en établissement de santé, dès lors que sont remplies des conditions de faisabilité. Elle est nécessairement prescrite par un médecin, en accord avec le patient et son entourage. Considérablement développée depuis 20 ans, elle intervient sur tous les départements de métropole et d’outre-mer (en 2019 : 295 établissements).
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BACKGROUND/OBJECTIVES: To determine the feasibility of conducting a cluster randomized controlled trial providing individualized feedback reports to increase advance care planning (ACP) engagement in the primary care setting.
DESIGN: Pilot cluster randomized controlled trial.
SETTING: Two primary care practices selected for geographic colocation.
PARTICIPANTS: Adults aged 55 years and older.
INTERVENTION: Brief assessment of readiness to engage in (stage of change for) three ACP behaviors (healthcare agent assignment, communication with agent about quality vs quantity of life, and living will completion) generating an individualized feedback report, plus a stage-matched brochure.
MEASURES: Patient recruitment and retention, intervention delivery, baseline characteristics, and stage of change movement.
RESULTS: Recruitment rates differed by practice. Several baseline sociodemographic characteristics differed between the 38 intervention and 41 control participants, including employment status, education, and communication with healthcare agent. Feedback was successfully delivered to all intervention participants, and over 90% of participants completed a 2-month follow-up. More intervention participants demonstrated progression in readiness than did control participants, without testing for statistical significance.
CONCLUSIONS: This pilot demonstrates opportunities and challenges of performing a clustered randomized controlled trial in primary care practices. Differences in the two practice populations highlight the challenges of matching sites. There was a signal for behavior change in the intervention group.
Delivery of end-of-life care has gained prominence in the UK, driven by a focus upon the importance of patient choice. In practice choice is influenced by several factors, including the guidance and conduct of healthcare professionals, their different understandings of what constitutes 'a good death', and contested ideas of who is best placed to deliver this. We argue that the attempt to elicit and respond to patient choice is shaped in practice by a struggle between distinct 'institutional logics'. Drawing on qualitative data from a two-part study, we examine the tensions between different professional and organisational logics in the delivery of end-of-life care. Three broad clusters of logics are identified: finance, patient choice and professional authority. We find that the logic of finance shapes the meaning and practice of 'choice', intersecting with the logic of professional authority in order to shape choices that are in the 'best interest' of the patient. Different groups might be able to draw upon alternative forms of professionalism, and through these enact different versions of choice. However, this can resemble a struggle for ownership of patients at the end of life, and therefore, reinforce a conventional script of professional authority.
Background: Over the past two decades, the number of hospitals with palliative care has increased significantly.
Objective: This study analyzes the availability of palliative care in U.S. hospitals and examines the variation by hospital characteristics, community-level socioeconomic demographics, health care markets, and geographic characteristics.
Methods: Data were obtained from the American Hospital Association Annual Survey Database for 2017 and supplemented with 2016 for nonresponders, the United States Census Bureau's 2017 American Community Survey, the Dartmouth Atlas of Health Care's 2016 Spending and 2011 Hospital and Physician Capacity datasets, the National Palliative Care Registry™, state-level directories on palliative care, and web-based searches. Multivariable logistic regression and average marginal effects were used to examine predictors of hospital palliative care programs.
Results: Seventy-two percent of hospitals with 50 or more beds had palliative care programs. Hospital and geographic characteristics were significantly associated with the presence of palliative care. Most notably, nonprofit hospitals were 24.5 percentage points more likely than for-profit hospitals to have palliative care, and metropolitan areas were 15.4 percentage points more likely than rural areas, controlling for other variables.
Conclusion: This study demonstrates that availability of palliative care in U.S. hospitals is determined by where patients live and the type of hospital to which they are admitted. Equitable and reliable availability to quality palliative care must improve across the nation.
Objective: To examine perceptions of facilitators and barriers to quality measurement and improvement in palliative care programs and differences by professional and leadership roles.
Methods: We surveyed team members in diverse US and Canadian palliative care programs using a validated survey addressing teamwork and communication and constructs for educational support and training, leadership, infrastructure, and prioritization for quality measurement and improvement. We defined key facilitators as constructs rated =4 (agree) and key barriers as those =3 (disagree) on 1 to 5 scales. We conducted multivariable linear regressions for associations between key facilitators and barriers and (1) professional and (2) leadership roles, controlling for key program and respondent factors and clustering by program.
Results: We surveyed 103 respondents in 11 programs; 45.6% were physicians and 50% had leadership roles. Key facilitators across sites included teamwork, communication, the implementation climate (or environment), and program focus on quality improvement. Key barriers included educational support and incentives, particularly for quality measurement, and quality improvement infrastructure such as strategies, systems, and skilled staff. In multivariable analyses, perceptions did not differ by leadership role, but physicians and nurse practitioners/nurses/physician assistants rated most constructs statistically significantly more negatively than other team members, especially for quality improvement (6 of the 7 key constructs).
Conclusions: Although participants rated quality improvement focus and environment highly, key barriers included lack of infrastructure, especially for quality measurement. Building on these facilitators and measuring and addressing these barriers might help programs enhance palliative care quality initiatives’ acceptability, particularly for physicians and nurses.
The COVID-19 pandemic and its sequelae have created scenarios of scarce medical resources, leading to the prospect that healthcare systems have faced or will face difficult decisions about triage, allocation and reallocation. These decisions should be guided by ethical principles and values, should not be made before crisis standards have been declared by authorities, and, in most cases, will not be made by bedside clinicians. Do not attempt resuscitation (DNAR) and withholding and withdrawing decisions should be made according to standard determination of medical appropriateness and futility, but there are unique considerations during a pandemic. Transparent and clear communication is crucial, coupled with dedication to provide the best possible care to patients, including palliative care. As medical knowledge about COVID-19 grows, more will be known about prognostic factors that can guide these difficult decisions.
COVID-19 continues to impact older adults disproportionately with respect to serious consequences ranging from severe illness and hospitalization to increased mortality risk. Concurrently, concerns about potential shortages of healthcare professionals and health supplies to address these issues have focused attention on how these resources are ultimately allocated and used. Some strategies, for example, misguidedly use age as an arbitrary criterion, which disfavors older adults in resource allocation decisions. This is a companion manuscript to the American Geriatrics Society (AGS) position statement, "Resource Allocation Strategies and Age-Related Considerations in the COVID-19 Era and Beyond." It is intended to inform stakeholders including hospitals, health systems, and policymakers about ethical considerations that should be considered when developing strategies for allocation of scarce resources during an emergency involving older adults. This review presents the legal and ethical background for the position statement and discusses the following issues that informed the development of the AGS positions: (1) age as a determining factor; (2) age as a tiebreaker; (3) criteria with a differential impact on older adults; (4) individual choices and advance directives; (5) racial/ethnic disparities and resource allocation; and (6) scoring systems and their impact on older adults. It also considers the role of advance directives as expressions of individual preferences in pandemics.
Since the beginning of the SARS-CoV-2 (also called COVID-19) outbreak in the Hubei province in China, half a million people have been infected and more than 25,000 died worldwide by the end of March 2020. In Europe, the third most infected country is France (after Italy and Spain) with more than 26,000 cases and about 1500 deaths by the end of the last week of March. One of the first French regions hit by the outbreak was Picardy, located at the northeast of the country. The first case in Picardy was diagnosed on February 26th, 2020 in the Cardiac Thoracic and Respiratory ICU of the Amiens-Picardy University Hospital. The number of patients admitted to the region's ICUs rapidly increased after that first case. To tackle this surge, an organisation was set in order to coordinate and facilitate the admission of critically ill COVID-19 infected patients, and to avoid or at least delay the overrun of ICU capacities in the region. The organisation has been based on a centralised on-call dispatch ICU consultant and efficient bed manager software.
Objective: Patients in the last year of life experience medical emergencies which may lead to an emergency attendance by ambulance clinicians and some patients having a transfer to hospital even when this is unwanted by patients, carers or professionals. Here we report the patient characteristics and outcomes of a 24-hour hospice nursing telephone advice service to support an ambulance service.
Method: An evaluation of the outcomes of ambulance calls to a nursing telephone advice service for people living in northwest London, UK, attended at home during a 6-month period by the London Ambulance Service, whose clinicians then sought advice from the hospice’s 24 hours’ telephone line.
Results: Forty-five attendances of 44 acutely ill people with palliative care needs resulted in a telephone call. Thirteen patients (30%) were male and the median age was over 80 years. Thirty-two attendances (71%) were managed without a transfer to hospital, with telephone advice from the hospice and in some cases arrangements for another clinician to visit. Seven attendances (16%) resulted in a transfer to hospital, of which at least five led to an admission. Six attendances (13%) resulted in a notification of the patient’s death.
Conclusions: This preliminary study shows the feasibility, outcomes and acceptability of telephone advice to support ambulance clinicians attending patients with palliative care needs. The service was associated with low rates of subsequent transfer to hospital. Further controlled research is needed to assess the clinical and cost-effectiveness of the service.
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.