BACKGROUND: The COVID-19 pandemic has aggressively reached the most vulnerable, not only the elderly but also patients with chronic conditions such as cancer. In this study, we present the outlines of ethical thinking and the measures implemented to try to respect our basic values of care, in the specific environment of an oncology hospital.
METHODS: Our ethics committee created an ethical watch system based on 24/7 shifts to assist practitioners in their daily decisions. We discuss the challenges faced by patients with cancer during the pandemic, such as access to critical care and ethical dilemmas in the context of resource scarcity, as well as the issue of isolation of patients. We also debate the restrictions in access to oncology care in a health context strongly 'prioritised' against COVID-19.
RESULTS: In all areas of an ethical dilemma, either for sorting out access to critical care or for the dramatic consequences of prolonged isolation of patients, our common thread was our attempt to protect, whenever possible, the principles of deontological ethics by strictly resisting utilitarian pressure. Respecting democratic health decision-making processes is a cornerstone of ethically relevant decisions, including in the context of a sanitary crisis.
CONCLUSION: The role of an ethics committee related to real-life situations includes not only a reflexive perspective in respect of fundamental principles, but also the help to enlighten and resolve ethical dilemmas in complex clinical situations. This ethical watch team assists physicians in decision-making, promoting the supportive and palliative dimension of care with a holistic approach.
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’Espace national de réflexion éthique sur la maladie d’Alzheimer et les maladies neuro-dégénératives EREMAND, animé par l’Espace de réflexion éthique de la région Île-de-France, a conduit au début de l’épidémie de Covid-19 une enquête nationale pour identifier les difficultés rencontrées par les professionnels du grand âge et de l’autonomie, les familles et les bénévoles, et les initiatives que ceux-ci ont mises en oeuvre. Sept difficultés
majeures sont identifiées : l’isolement induit par l’interdiction des visites, le manque de matériels de protection et de tests, les difficultés des personnes en difficulté cognitive à comprendre les mesures pour éviter la propagation de l’épidémie, la soutenabilité de la surcharge de travail pour les professionnels, l’inquiétude des familles des résidents, les
situations complexes à domicile et les difficultés d’accès aux soins. Quatre initiatives sont mises en oeuvre : information et formation des équipes, compensation de l’interruption des visites, concertations et échanges entre professionnels, actions au bénéfice des personnes vivant à domicile. L’épidémie de Covid-19 est venue percuter le secteur du grand
âge à un moment très particulier de son histoire, de plusieurs années d’effort du secteur pour se réinventer autour de valeurs fortes. Elles ont été des ressources au cours de cette période de crise. Une ambitieuse loi grand âge et autonomie, apparaît dès lors, comme une nécessité.
La vie du pôle de gériatrie de Mulhouse a basculé le 3 mars 2020.
Les premiers patients Covid-19 affluent dans les services de réanimation et de médecine interne du Groupe hospitalier de la Région de Mulhouse et Sud-Alsace (GHRMSA). Dès le 4 mars, le pôle de gériatrie de Mulhouse
est en marche pour le front. Il s’engage immédiatement dans une réorganisation de son fonctionnement pour transformer le court-séjour en une unité Covid initialement de 11 lits. Les 25 patients présents jusqu’alors dans l’unité sont transférés dans d’autres services du GHRMSA en moins de 48 heures. Une logistique intense se met en place et les premiers patients Covid-19 sont accueillis le 5 mars avec des formes graves d’emblée. Dès le 7 mars, le déferlement de patients contraint le court-séjour à ouvrir ses 25 lits pour les malades Covid-19 puis une unité supplémentaire de 13 lits quelques jours après.
BACKGROUND: The coronavirus disease 2019 pandemic has led to escalating infection rates and associated deaths worldwide. Amid this public health emergency, the urgent need for palliative care integration throughout critical care settings has never been more crucial.
OBJECTIVE: To promote palliative care engagement in critical care; share palliative care resources to support critical care nurses in alleviating suffering during the coronavirus disease 2019 pandemic; and make recommendations to strengthen nursing capacity to deliver high-quality, person-centered critical care. Methods Palliative and critical care literature and practice guidelines were reviewed, synthesized, and translated into recommendations for critical care nursing practice.
RESULTS: Nurses are ideally positioned to drive full integration of palliative care into the critical care delivery for all patients, including those with coronavirus disease 2019, given their relationship-based approach to care, as well as their leadership and advocacy roles. Recommendations include the promotion of healthy work environments and prioritizing nurse self-care in alignment with critical care nursing standards.
CONCLUSIONS: Nurses should focus on a strategic integration of palliative care, critical care, and ethically based care during times of normalcy and of crisis. Primary palliative care should be provided for each patient and family, and specialist services sought, as appropriate. Nurse educators are encouraged to use these recommendations and resources in their curricula and training. Palliative care is critical care. Critical care nurses are the frontline responders capable of translating this holistic, person-centered approach into pragmatic services and relationships throughout the critical care continuum.
The COVID-19 pandemic has highlighted the need for healthcare providers skilled in rapid, flexible decision-making, effective and anticipatory leadership, and in dealing with trauma and moral distress. Palliative care (PC) workers have been an essential part of the COVID-19 response in advising on goals of care, symptom management and difficult decision-making, and in supporting distressed healthcare workers, patients and families. We describe GPEC (Global Palliative Education Collaborative), a training partnership between Harvard, UCSF, and Tulane medical schools in the US; and two international PC programs in Uganda and India. GPEC offers US-based PC fellows participation in an international elective to learn about resource-limited PC provision, gain perspective on global challenges to caring for patients at the end of life, and cultivate resiliency. International PC colleagues have much to teach about practicing compassionate PC amidst resource constraints and humanitarian crisis. We also describe a novel educational project that our GPEC faculty and fellows are participating in - the Resilience Inspiration Storytelling Empathy (RISE) Project - and discuss positive outcomes of the project.
Background: COVID-19 has directly and indirectly caused high mortality worldwide.
Aim: To explore patterns of mortality during the COVID-19 pandemic and implications for palliative care, service planning and research.
Design: Descriptive analysis and population-based modelling of routine data.
Participants and setting: All deaths registered in England and Wales between 7 March and 15 May 2020. We described the following mortality categories by age, gender and place of death: (1) baseline deaths (deaths that would typically occur in a given period); (2) COVID-19 deaths and (3) additional deaths not directly attributed to COVID-19. We estimated the proportion of people who died from COVID-19 who might have been in their last year of life in the absence of the pandemic using simple modelling with explicit assumptions.
Results: During the first 10 weeks of the pandemic, there were 101,614 baseline deaths, 41,105 COVID-19 deaths and 14,520 additional deaths. Deaths in care homes increased by 220%, while home and hospital deaths increased by 77% and 90%, respectively. Hospice deaths fell by 20%. Additional deaths were among older people (86% aged >= 75 years), and most occurred in care homes (56%) and at home (43%). We estimate that 22% (13%–31%) of COVID-19 deaths occurred among people who might have been in their last year of life in the absence of the pandemic.
Conclusion: The COVID-19 pandemic has led to a surge in palliative care needs. Health and social care systems must ensure availability of palliative care to support people with severe COVID-19, particularly in care homes.
Background: This retrospective cohort study aims to define the clinical findings and outcomes of every patient admitted to a district general hospital in Surrey with COVID-19 in March 2020, providing a snapshot of the first wave of infection in the UK. This study is the first detailed insight into the impact of frailty markers on patient outcomes and provides the infection rate among healthcare workers.
Methods: Data were obtained from medical records. Outcome measures were level of oxygen therapy, discharge and death. Patients were followed up until 21 April 2020.
Results: 108 patients were included. 34 (31%) died in hospital or were discharged for palliative care. 43% of patients aged over 65 died. The commonest comorbidities were hypertension (49; 45%) and diabetes (25; 23%). Patients who died were older (mean difference ±SEM, 13.76±3.12 years; p<0.0001) with a higher NEWS2 score (median 6, IQR 2.5–7.5 vs median 2, IQR 2–6) and worse renal function (median differences: urea 2.7 mmol/L, p<0.01; creatinine 4 µmol/L, p<0.05; eGFR 14 mL/min, p<0.05) on admission compared with survivors. Frailty markers were identified as risk factors for death. Clinical Frailty Scale (CFS) was higher in patients over 65 who died than in survivors (median 5, IQR 4–6 vs 3.5, IQR 2–5; p<0.01). Troponin and creatine kinase levels were higher in patients who died than in those who recovered (p<0.0001). Lymphopenia was common (median 0.8, IQR 0.6–1.2; p<0.005). Every patient with heart failure died (8). 26 (24%) were treated with continuous positive airway pressure (CPAP; median 3 days, IQR 2–7.3) and 9 (8%) were intubated (median 14 days, IQR 7–21). All patients who died after discharge (4; 6%) were care home residents. 276 of 699 hospital staff tested were positive for COVID-19.
Conclusions: This study identifies older patients with frailty as being particularly vulnerable and reinforces government policy to protect this group at all costs.
BACKGROUND: Preparation for an impending death through EOL (end-of-life) discussions and human presence when a person is dying is important for both patients and families.
OBJECTIVE: The aim was to study whether EOL discussions were offered and to what degree patients were alone at time of death when dying from Covid-19, comparing deaths in nursing homes and hospitals.
DESIGN: The national Swedish Register of Palliative Care (SRPC) was used. All expected deaths from Covid-19 in nursing homes and hospitals were compared with, and contrasted to, deaths in a reference population (deaths in 2019).
SETTING AND SUBJECTS: A total of 1346 expected Covid-19 deaths in nursing homes (n=908) and hospitals (n=438) were analyzed.
RESULTS: Those who died were of a more advanced age in nursing homes (mean 86.4 years) and of a lower age in hospitals (mean 80.7 years) (p<0.0001). Fewer EOL discussions with patients were held compared with deaths in 2019 (74% vs. 79%, p<0.001) and dying with someone present was much more uncommon (59% vs. 83%, p<0.0001). In comparisons between nursing homes and hospital deaths, more patients dying in nursing homes were women (56% vs. 37%, p<0.0001) and significantly fewer had a retained ability to express their will during the last week of life (54% vs. 89%, p<0.0001). Relatives were present at time of death in only 13% and 24% of the cases in nursing homes and hospitals, respectively (p<0.001). The corresponding figures for staff were 52% and 38% (p<0.0001).
CONCLUSION: Dying from Covid-19 negatively affects the possibility of holding an EOL discussion and the chances of dying with someone present. This has considerable social and existential consequences for both patients and families.
BACKGROUND: The global COVID-19 pandemic has left health and social care systems facing the challenge of supporting large numbers of bereaved people in difficult and unprecedented social conditions. Previous reviews have not comprehensively synthesised the evidence on the response of health and social care systems to mass bereavement events.
AIM: To synthesise the evidence regarding system-level responses to mass bereavement events, including natural and human-made disasters as well as pandemics, to inform service provision and policy during the COVID-19 pandemic and beyond.
DESIGN: A rapid systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively (www.crd.york.ac.uk/prospero, CRD 42020180723).
DATA SOURCES: MEDLINE, Global Health, PsycINFO and Scopus databases were searched for studies published between 2000 and 2020. Reference lists were screened for further relevant publications, and citation tracking was performed.
RESULTS: Six studies were included reporting on system responses to mass bereavement following human-made and natural disasters, involving a range of individual and group-based support initiatives. Positive impacts were reported, but study quality was generally low and reliant on data from retrospective evaluation designs. Key features of service delivery were identified: a proactive outreach approach, centrally organised but locally delivered interventions, event-specific professional competencies and an emphasis on psycho-educational content.
CONCLUSION: Despite the limitations in the quantity and quality of the evidence base, consistent messages are identified for bereavement support provision during the pandemic. High quality primary studies are needed to ensure service improvement in the current crisis and to guide future disaster response efforts.
Background: the literature contains limited information on the problems faced by dying patients with COVID-19 and the effectiveness of interventions to manage these.
Aim: The aim of this audit was to assess the utility of our end-of-life care plan, and specifically the effectiveness of our standardised end-of-life care treatment algorithms, in dying patients with COVID-19.
Design: The audit primarily involved data extraction from the end-of-life care plan, which includes four hourly nursing (ward nurses) assessments of specific problems: patients with problems were managed according to standardised treatment algorithms, and the intervention was deemed to be effective if the problem was not present at subsequent assessments.
Setting/participants: This audit was undertaken at a general hospital in England, covered the 8 weeks from 16 March to 11 May 2020 and included all inpatients with COVID-19 who had an end-of-life care plan (and died).
Results: Sixty-one patients met the audit criteria: the commonest problem was shortness of breath (57.5%), which was generally controlled with conservative doses of morphine (10–20 mg/24 h via a syringe pump). Cough and audible respiratory secretions were relatively uncommon. The second most common problem was agitation/delirium (55.5%), which was generally controlled with standard pharmacological interventions. The cumulative number of patients with shortness of breath, agitation and audible respiratory secretions increased over the last 72 h of life, but most patients were symptom controlled at the point of death.
Conclusion: Patients dying of COVID-19 experience similar end-of-life problems to other groups of patients. Moreover, they generally respond to standard interventions for these end-of-life problems.
BACKGROUND: Hospital palliative care is an essential part of the COVID-19 response, but relevant data are lacking. The recent literature underscores the need to implement protocols for symptom control and the training of non-specialists by palliative care teams.
AIM: The aim of the study was to describe a palliative care unit's consultation and assistance intervention at the request of an Infectious Diseases Unit during the COVID-19 pandemic, determining what changes needed to be made in delivering palliative care.
DESIGN: This is a single holistic case study design using data triangulation, for example, audio recordings of team meetings and field notes.
SETTING/PARTICIPANTS: This study was conducted in the Palliative Care Unit of the AUSL-IRCCS hospital of Reggio Emilia, which has no designated beds, consulting with the Infectious Diseases Unit of the same hospital.
RESULTS: A total of 9 physicians and 22 nurses of the Infectious Diseases Unit and two physicians of the Palliative Care Unit participated in the study.Our Palliative Care Unit developed a feasible 18-day multicomponent consultation intervention. Three macro themes were identified: (1) new answers to new needs, (2) symptom relief and decision-making process, and (3) educational and training issues.
CONCLUSION: From the perspective of palliative care, some changes in usual care needed to be made. These included breaking bad news, patients' use of communication devices, the limited time available for the delivery of care, managing death necessarily only inside the hospital, and relationships with families.
BACKGROUND: Palliative care services face challenges in adapting and responding to the COVID-19 pandemic. Understanding how palliative care needs and outcomes have changed during the pandemic compared to before the pandemic is crucial to inform service planning and research initiatives.
AIM: To evaluate the impact of COVID-19 on symptoms, clinical characteristics, and outcomes for patients referred to a hospital-based palliative care service in a district general hospital in London, UK.
DESIGN: A retrospective service evaluation. Data were extracted from the electronic patient records.
SETTING/PARTICIPANTS: The first 60 inpatients with confirmed COVID-19 infection, referred to the hospital palliative care service between 1 March 2020 and 23 April 2020, and another 60 inpatients, referred to the hospital palliative care service between 11 March 2019 and 23 April 2019, were included from a district general hospital in East London, UK.
RESULTS: Patients with COVID-19 have lower comorbidity scores, poorer performance status, and a shorter time from referral to death compared to patients without COVID-19. Breathlessness, drowsiness, agitation, and fever are the most prevalent symptoms during COVID-19 compared to pain and drowsiness pre-COVID-19. Time from admission to referral to palliative care is longer for Black, Asian and minority ethnic patients, especially during COVID-19.
CONCLUSION: Early referral to palliative care is essential in COVID-19, especially for Black, Asian and minority ethnic groups. There is urgent need to research why Black, Asian and minority ethnic patients are referred late; how palliative care services have changed; and possible solutions to setting up responsive, flexible, and integrated services.
BACKGROUND: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control.
AIM: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics.
DESIGN: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence.
DATA SOURCES: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020.
RESULTS: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to 'systems' (community providers feeling disadvantaged in terms of receiving timely information and protocols), 'space' (recognised need for more care in the community), 'staff' (training needs and resilience) and 'stuff' (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations).
CONCLUSIONS: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.
Background: Increasing numbers of people dying from COVID-19 are reported, but data are lacking on the way they die.
Objective: To study symptoms and symptom relief during the last week of life, comparing nursing homes with hospitals.
Design: The Swedish Register of Palliative Care with national coverage was used. Breakthrough symptoms were registered as Yes/No. Symptom relief was recorded on a 3-grade scale as complete—partial—no relief.
All deaths in COVID-19 were contrasted to deaths in a reference population (deaths 2019). Deaths at nursing homes were compared with deaths in hospitals.
Setting and Subjects: All deaths in hospitals or nursing homes (n = 490) were analyzed. Deaths in other settings (specialized palliative care wards [n = 11], in palliative home care [n = 2], or in their own homes [n = 8]) were excluded (n = 21). Only patients with expected deaths (n = 390) were entered in the final analysis.
Results: Breathlessness as a breakthrough symptom was more common in COVID-19 patients than in the 2019 reference population (p < 0.001) and relief of breathlessness, as well as anxiety, delirium, and death rattles was less successful in COVID-19 patients (p < 0.05 to p < 0.01 in different comparisons). Patients were older in nursing homes than in hospitals (86.6 years vs. 80.9 years, p < 0.001) and more often female (48% vs. 34%, p < 0.001). Breakthrough of breathlessness was much more frequently reported in hospital settings than in nursing homes, 73% versus 35% (p < 0.0001), and complete relief was more rarely possible in hospitals, 20% versus 42% (p < 0.01). The proportion of partial relief+complete relief was comparable, 92% versus 95% (ns). Also, anxiety and pain were more often completely relieved in nursing homes (p < 0.01 in both comparisons).
Conclusion: The lower symptom prevalence in nursing homes may be explained by elderly frail residents dying already in the first phase of the COVID-19 disease, before acute respiratory distress syndrome develops.
As the world has rightfully focused on COVID-19 people have continued to die of other things, and their needs and the needs of their loved ones have been overshadowed by the pandemic. My mother died of stage IV pancreatic cancer on April 25, 2020 in New York City (NYC).
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The severe acute respiratory syndrome coronavirus2 (SARS-CoV-2) pandemic determined the need for extreme measures of social distancing, thus family members’ visits are not allowed for hospitalized patients and communication can take place only by phone calls or, in some cases, by the use of video calls. During this period, amongst the requests emerged from the families of our patients, we were challenged in particular by one wife of a dying patient wishing to see him one last time.
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The COVID-19 pandemic that struck New York City in the spring of 2020 was a natural experiment for the clinical ethics services of NewYork-Presbyterian (NYP). Two distinct teams at NYP's flagship academic medical centers-at NYP/Columbia University Medical Center (Columbia) and NYP/Weill Cornell Medical Center (Weill Cornell)-were faced with the same pandemic and operated under the same institutional rules. Each campus used time as an heuristic to analyze our collective response. The Columbia team compares consults during the pandemic with the same period during the year prior. The Weill Cornell service describes the phases of the pandemic to depict its temporal evolution and subsequent ethical challenges. Both sites report that the predominant ethical challenges centered around end-of-life decision making, setting goals of care, and medical futility, all complicated by resource allocation questions and the ambiguity of state law under crisis standards of care. The Columbia campus saw a statistically significant increase in ethics consultations provided to Hispanic patients, perhaps reflective of the disproportionate burden of COVID-19 suffered by this demographic. While Weill Cornell and Columbia saw a surge in clinical ethics consultations, the two services assumed a more expansive role than one normally played in institutional life. Serving as intermediaries between frontline clinicians and senior hospital administrators, consultants provided critical intelligence to hospital leadership about the evolution of the pandemic, disseminated information to clinicians, and attended to the moral distress of colleagues who were asked to provide care under truly extraordinary circumstances. The COVID-19 surge in New York City revealed latent capabilities in ethics consultation that may prove useful to the broader clinical ethics community as it responds to the current pandemic and reconceptualizes its potential for future service.
The Coronavirus disease 2019 (COVID-19) pandemic has led to high numbers of critically ill and dying patients in need of expert management of dyspnea, delirium, and serious illness communication. The rapid spread of severe acute respiratory syndrome-Coronavirus-2 creates surges of infected patients requiring hospitalization and puts palliative care programs at risk of being overwhelmed by patients, families, and clinicians seeking help. In response to this unprecedented need for palliative care, our program sought to create a collection of palliative care resources for nonpalliative care clinicians. A workgroup of interdisciplinary palliative care clinicians developed the Palliative Care Toolkit, consisting of a detailed chapter in a COVID-19 online resource, a mobile and desktop Web application, one-page guides, pocket cards, and communication skills training videos. The suite of resources provides expert and evidence-based guidance on symptom management including dyspnea, pain, and delirium, as well as on serious illness communication, including conversations about goals of care, code status, and end of life. We also created a nurse resource hotline staffed by palliative care nurse practitioners and virtual office hours staffed by a palliative care attending physician. Since its development, the Toolkit has helped us disseminate best practices to nonpalliative care clinicians delivering primary palliative care, allowing our team to focus on the highest-need consults and increasing acceptance of palliative care across hospital settings.