The COVID-19 pandemic created a global health emergency that has changed the practice of medicine and has shown the need for palliative care as an essential element of hospital care. In our small South Florida hospital, a palliative care service was created to support the frontline caregivers. Thanks to the hospital support, our team was formed rapidly. It consisted of 3 advanced care practitioners, a pulmonary physician with palliative care experience and the cooperation of community resources such as hospice and religious support. We were able to support patients and their families facilitating communication as visitation was not allowed. We also addressed goals of care, providing comfort care transition when appropriate, and facilitating allocation of scarce resources to patients who were most likely to benefit from them. With this article we describe a simplified framework to replicate the creation of a Palliative Care Team for other hospitals that are experiencing this need.
Ce récit documente comment des malades sont morts en FaceTime pendant l’épidémie de Covid. À partir d’une enquête de terrain que j’ai commencée en janvier 2020 dans le service de réanimation d’un hôpital de la côte Ouest des États-Unis, je raconte l’apparition de la Covid-19, la séparation des malades de leurs familles, la mort vécue sur l’écran des téléphones mobiles, ainsi que les différentes façons d’agir des soignants face à cette situation que, tous, s’accordèrent à trouver « horrible ».
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.
Assisi Hospice is a charity organisation that provides the whole continuum of inpatient (85 beds), day care and home care services. In line with national COVID-19 measures, the hospice came up with guidelines to reflect these measures on the ground. The experience of Assisi Hospice in delivering palliative care in a pandemic mirrors that of similar hospice providers in Singapore. We have chosen to describe the challenges based on each setting below and the strategies implemented to mitigate them.
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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.
Importance: Little is known about how US clinicians have responded to resource limitation during the coronavirus disease 2019 (COVID-19) pandemic.
Objective: To describe the perspectives and experiences of clinicians involved in institutional planning for resource limitation and/or patient care during the pandemic.
Design, Setting, and Participants: This qualitative study used inductive thematic analysis of semistructured interviews conducted in April and May 2020 with a national group of clinicians (eg, intensivists, nephrologists, nurses) involved in institutional planning and/or clinical care during the COVID-19 pandemic across the United States.
Main Outcomes and Measures: Emergent themes describing clinicians’ experience providing care in settings of resource limitation.
Results: The 61 participants (mean [SD] age, 46  years; 38 [63%] women) included in this study were practicing in 15 US states and were more heavily sampled from areas with the highest rates of COVID-19 infection at the time of interviews (ie, Seattle, New York City, New Orleans). Most participants were White individuals (39 [65%]), were attending physicians (45 [75%]), and were practicing in large academic centers (=300 beds, 51 [85%]; academic centers, 46 [77%]). Three overlapping and interrelated themes emerged from qualitative analysis, as follows: (1) planning for crisis capacity, (2) adapting to resource limitation, and (3) multiple unprecedented barriers to care delivery. Clinician leaders worked within their institutions to plan a systematic approach for fair allocation of limited resources in crisis settings so that frontline clinicians would not have to make rationing decisions at the bedside. However, even before a declaration of crisis capacity, clinicians encountered varied and sometimes unanticipated forms of resource limitation that could compromise care, require that they make difficult allocation decisions, and contribute to moral distress. Furthermore, unprecedented challenges to caring for patients during the pandemic, including the need to limit in-person interactions, the rapid pace of change, and the dearth of scientific evidence, added to the challenges of caring for patients and communicating with families.
Conclusions and Relevance: The findings of this qualitative study highlighted the complexity of providing high-quality care for patients during the COVID-19 pandemic. Expanding the scope of institutional planning to address resource limitation challenges that can arise long before declarations of crisis capacity may help to support frontline clinicians, promote equity, and optimize care as the pandemic evolves.
OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.
DESIGN: Qualitative study using interviews and focus groups.
SETTING: Health and Social Care Services in the North of England.
PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members.
RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.
CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.
La pandémie a touché avec violence certains établissements d’hébergement pour personnes âgées dépendantes, mais tous ont dû se réorganiser. Leur fonctionnement ne sera plus jamais le même et la transparence vis-à-vis des salariés et des familles des résidents est devenue une obligation. La coopération avec les pharmaciens d’officine, qui peuvent être des relais d’information auprès des familles, doit s’intensifier.
Les aspects de télémédecine concernant la prise en charge des patients avec un accident vasculaire cérébral (AVC) sont dénommés « téléAVC », et font partie intégrante de l’organisation de la filière de prise en charge depuis la mise en place du Plan national « AVC 2010–2014 ». Il permet une équité de prise en charge à tous les stades de la maladie en permettant un accès facilité à une unité neurovasculaire (UNV). Le téléAVC permet le partage d’informations, de compétences et de responsabilités entre praticiens lors de tous les actes de télémédecine (téléconsultation, téléexpertise, téléassistance et télésurveillance). La mise en place des outils de télémédecine nécessite un cahier de charges précis et des procédures définissant le rôle de chaque intervenant (urgentistes, radiologue, neurologues, etc.). Les modèles du téléAVC s’adaptent aux besoins de chaque territoire et selon les ressources disponibles (plateaux d’imagerie, service d’accueil d’urgences, UNV, unité de neuroradiologie interventionnel, etc.) en dessinant des organisations hospitalières graduées. Il est habituel de séparer les expériences de la phase aiguë, menées en préhospitalier ou en hospitalier (de l’appel au Centre 15, à l’envoi d’ambulance équipée de moyen vidéo, voire de scanner embarqué), de celles conduites dans la phase chronique. De même, les prises en charge peuvent être parcellaires (accès seulement à une thrombolyse), ou complètement intégrées organisant l’ensemble du parcours AVC. La majorité des expériences de téléAVC portent sur la prise en charge aiguë. Les études médicoéconomiques restent limitées. La télémédecine appliquée aux AVC contribue non seulement à l’effet de substitution du fait de ressources limitées, mais aussi à la diffusion des connaissances et des compétences pour une prise en charge optimale du bon patient, au bon moment, au bon endroit et avec des thérapeutiques adaptées. Le Télé-AVC est une réponse à une raréfaction des ressources médicales, une aide face à la technicité de prise en charge des patients AVC et participe ainsi à l’égalité à l’accès aux soins et à l’efficacité du système de soins.émédecine et accident vasculaire cérébral : « Rôle de la télémédecine dans les accidents vasculaires cérébraux »
OBJECTIVE: To understand the impact of the COVID-19 pandemic on the hospice and palliative workforce and service delivery.
DESIGN AND SAMPLE: This was a cross-sectional survey of 36 hospice and palliative care workforce members representing all United States geographic regions.
RESULTS: Most respondents (70%) reported an increase in specific palliative care services as a result of the pandemic. Two thirds (78%) of respondents reported their agency has cared for confirmed COVID-19 patients. Only half reported the agency had access to laboratory facilities for surveillance and detection of outbreaks in both patients and staff (58%) and that the agency could test patients and providers for COVID-19 (55%). Qualitative comments described the impact of the pandemic and resulting social distancing measures on the emotional well-being of patients, families, and staff.
CONCLUSIONS: Our findings suggest that the COVID-19 pandemic has strained the palliative and hospice care workforce as it provides increased services at an unprecedented rate to patients and families. The implications of these findings are important for public health nurses who are skilled in disaster management and quickly responding to emergencies. The expertise of public health nurses can be leveraged to support palliative care agencies as they strive to manage the pandemic in the communities they serve.
The current COVID-19 pandemic has necessitated the redeployment of NHS staff to acute-facing specialties, meaning that care of dying people is being provided by those who may not have much experience in this area. This report details how a plan, do, study, act (PDSA) approach was taken to implementing improved, standardised multidisciplinary documentation of individualised care and review for people who are in the last hours or days of life, both before and during the COVID-19 pandemic. The documentation and training produced is subject to ongoing review via the specialist palliative care team's continuously updated hospital deaths dashboard, which evaluates the care of patients who have died in the trust. We hope that sharing the experiences and outcomes of this process will help other trusts to develop their own pathways and improve the care of dying people through this difficult time and beyond.
This narrative describes the experiences of an inner city respiratory unit that was transformed to treat COVID-19 patients with continuous positive airway pressure (CPAP) ventilation who were not scheduled for any further escalation in treatment. The high mortality rate and unconventional way of dying led to the creation of local guidance for removing assisted ventilation when the treatment ceased to be effective. We reflect on the specific challenges that caring for these patients holistically has presented and how we have learnt to deliver good palliative care in a unique set of circumstances. We also consider the impact of the pandemic on our team and how the development of a multidisciplinary support system has improved team dynamics and ultimately patient care.
Background: There are substantial disparities in distribution of palliative care (PC) services within Latin America, with Bolivia historically lagging behind neighboring countries in PC metrics. Comprehensive data on PC in Bolivia were last collected in 2012 through the Latin American Association for Palliative Care (ALCP) Atlas of PC.
Objective: to update the 2012 data and describe the current state of PC in Bolivia to aid in their ongoing efforts to expand PC services. In addition, to develop an instrument for assessment of national PC capacity that can be adapted for use in other countries.
Design: A cross-sectional study was conducted using personal and online structured interviews of PC team directors from all 19 PC teams around the country.
Measurements: new survey was developed for this study based on the ALCP Atlas of PC and international PC guidelines.
Results: PC teams in Bolivia have slowly increased in number since 2008. There are currently 19 PC teams in Bolivia, highly concentrated in urban centers. Multidisciplinary teams typically include physicians, nurses, psychologists, and social workers. The majority of teams offer treatments for all 16 essential PC symptoms included in our study. Teams report significant barriers for their patients to obtain opioid pain medications.
Conclusions: Bolivian PC teams utilize multidisciplinary teams and have the capability to treat many of the essential PC symptoms with guideline-recommended treatments. However, it is unclear whether availability of services translates to accessibility for most patients, especially given their geographic distribution and cost of services.
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.
CONTEXT: Palliative care is an essential component of the COVID-19 pandemic response, but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown.
OBJECTIVE: To evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic.
METHODS: We developed, piloted and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was emailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted.
RESULTS: Eighty-three participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap and disinfectant products (43%, 42%, and 59% respectively), and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional Personal Protective Equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with non-specialist staff in other healthcare settings.
CONCLUSION: Our survey suggests that African palliative care services could support the wider health system's response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety.
COVID-19 was first reported in Wuhan, China, in December 2019; it rapidly spread around the world and was declared a global pandemic by the World Health Organization in March 2020. The palliative care program at the Princess Margaret Cancer Centre, Toronto, Canada, provides comprehensive care to patients with advanced cancer and their families, through services including an acute palliative care unit, an inpatient consultation service, and an ambulatory palliative care clinic. In the face of a global pandemic, palliative care teams are uniquely placed to support patients with cancer who also have COVID-19. This may include managing severe symptoms such as dyspnea and agitation, as well as guiding advance care planning and goals of care conversations. In tandem, there is a need for palliative care teams to continue to provide care to patients with advanced cancer who are COVID-negative but who are at higher risk of infection and adverse outcomes related to COVID-19. This paper highlights the unique challenges faced by a palliative care team in terms of scaling up services in response to a global pandemic while simultaneously providing ongoing support to their patients with advanced cancer at a tertiary cancer center.
OP is a 59 year old female who presents to the emergency room in respiratory distress. Her COVID-19 polymerase chain reaction test was positive, as was her SARS-CoV-2 IgM antibody screen. As she was hypoxic (room air oxygen saturation: 89%), she was admitted for further treatment.
In March 2020, Montefiore Health System in the Bronx, New York, received an influx of adults who were critically ill with coronavirus disease (COVID-19). The Children’s Hospital at Montefiore (CHAM), a 130-bed facility attached to an adult hospital, accommodated adult patients in the PICU, inpatient wards, and post-anesthesia care unit. CHAM pediatric faculty and housestaff were deployed to serve as primary care physicians and subspecialists for these adults (up to 84 years old), anticipating up to 100 patients.
Among many challenges faced was the commitment by the pediatric faculty and staff to find a way to continue family-centered and compassionate care in the face of social distancing rules during the pandemic. Our goal was to preserve the patient’s humanity and their relationship to family and friends who were not permitted to visit. There is an ethical imperative to provide palliative care during a crisis when lives will be lost. As a result, we chose to rapidly expand our palliative care capabilities by training frontline medical providers and enlarging our pediatric palliative care presence to serve each adult admitted with COVID-19.
Background: New Orleans, Louisiana served as a central location for a surge of novel coronavirus cases during the months of March 2020 to May 2020. To provide guidance to palliative care teams naive to the palliative care demand associated with a surge of coronavirus cases, we document our protocol to best optimize palliative care resources. This report aims to present this information and reflect upon what was most beneficial/least beneficial to serve as a roadmap for palliative teams facing this pandemic.
Objective: To pilot a team-based structured protocol to categorize severity of COVID-19 intensive care unit (ICU) admissions and subsequently collaborate with the palliative interdisciplinary team to assess physical, spiritual, and psychosocial needs.
Design: New ICU consults were categorized into color-coded clinical severity "pots" during daily ICU interdisciplinary rounds. Clinical decision making and communication with patient/next of kin were based on "pot" classification.
Settings/Subjects: Palliative medicine consults were placed on all COVID-19 positive patients admitted to the ICU between March 29, 2020, and May 1, 2020.
Measurements: A retrospective chart review was performed to analyze the effect of palliative care consultation on completion of goals-of-care conversations and the life-sustaining treatment (LST) document, an advance directive form specific to the Veterans Affairs hospital system between March 29, 2020 and May 1, 2020.
Results: Of the palliative consults evaluated by a palliative provider, 74% resulted in completion of a LST document, 58% resulted in video contact with family members, and 100% incorporated a goals-of-care discussion.
Conclusions: We found that standardizing palliative care consultation on all COVID-19 positive ICU admissions subjectively alleviated the burden on ICU providers and staff in the midst of a crisis, resulted in increased documentation of patient goals-of-care preferences/LSTs, facilitated clinical updates to family members, and better distributed clinical burden among palliative team members.
L’épidémie de Covid-19 qui avait débuté en novembre en Chine est devenue une épidémie en France à partir du 16 mars 2020 avec la déclaration du confinement de la population afin de diminuer la propagation du virus. Dès le 17 mars et jusqu’au 27 mars 2020, la cellule de veille de la Société française de gériatrie et gérontologie décide de mener une enquête pour analyser la mise en place de la mobilisation des structures de gériatrie, étant donné que cette épidémie avait montré qu’elle entraînait une surmortalité majoritairement chez les personnes âgées. L’enquête a pu réunir la réponse de 34 structures, dont neuf étaient situées en zone cluster de forte épidémie. Des services de court séjour gériatriques
dédiés pour les patients infectés par le Covid-19 étaient présents dans huit établissements, uniquement hors des zones clusters. Neuf soins de suite et de rééducation gériatriques ont été dédiés, une activité supplémentaire de télémédecine concernait 35 % des établissements, et des moyens d’écoute des familles, d’animation et de communication par tablettes concernaient 36% des établissements. Cette enquête est une photographie d’un moment initial de l’épidémie. Elle donne l’occasion de décrire le contexte dans lequel cette épidémie est survenue en ce qui concerne la politique gériatrique, et d’apprécier la réactivité et l’inventivité de ces services pour répondre aux besoins des personnes âgées.