Médecin spécialiste des leucémies, l'auteure examine la notion d'immortalité dans une double perspective historique et biologique. Thème des mythes et des religions, l'immortalité connaît un renouveau avec le transhumanisme contemporain. Si l'augmentation des centenaires atteste l'allongement de l'espérance de vie, la biologie rappelle que la mort est une des lois incontournables du cycle du vivant.
Purpose: Visitor restrictions during the COVID-19 pandemic limit in-person family meetings for hospitalized patients. We aimed to evaluate the quantity of family meetings by telephone, video and in-person during the COVID-19 pandemic by manual chart review. Secondary outcomes included rate of change in patient goals of care between video and in-person meetings, the timing of family meetings, and variability in meetings by race and ethnicity.
Methods: A retrospective cohort study evaluated patients admitted to the intensive care unit at an urban academic hospital between March and June 2020. Patients lacking decision-making capacity and receiving a referral for a video meeting were included in this study.
Results: Most patients meeting inclusion criteria (N = 61/481, 13%) had COVID-19 pneumonia (n = 57/61, 93%). A total of 650 documented family meetings occurred. Few occurred in-person (n = 70/650, 11%) or discussed goals of care (n = 233/650, 36%). For meetings discussing goals of care, changes in patient goals of care occurred more often for in-person meetings rather than by video (36% vs. 11%, p = 0.0006). The average time to the first goals of care family meeting was 11.4 days from admission. More documented telephone meetings per admission were observed for White (10.5, SD 9.5) and Black/African-American (7.1, SD 6.6) patients compared to Hispanic or Latino patients (4.9, SD 4.9) (p = 0.02).
Conclusions: During this period of strict visitor restrictions, few family meetings occurred in-person. Statistically significant fewer changes in patient goals of care occurred following video meetings compared to in-person meetings, providing support limiting in-person meetings may affect patient care.
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.
BACKGROUND: Eliciting individual values and preferences of patients is essential to delivering high quality palliative care and ensuring patient-centered advance care planning. Despite advance care planning conserving healthcare costs by up to 36%, reducing psychological distress of patients and caregivers, and ensuring palliative care delivery in line with patient wishes, less than 33% of adults engage in it. We aimed to develop a mobile application intervention to address the challenges related to advance care planning and improve the delivery of palliative care.
METHODS: Design-thinking methodology was used to develop a mobile application, in response to issues prominently identified in current palliative care literature.
RESULTS: Issues surrounding communication of patient values from both the patient and provider side is identified as a main issue in palliative care. We designed a mobile application intervention prototype to address this.
CONCLUSIONS: Our "Mission Statement" mobile application will allow patients to create a mission statement identifying what they want their care team to know about them, as well as space to identify important values and preferences. Patients will be able to evolve their mission statement and values and preferences over the course of their palliative care journey through the application. Design-thinking methodology is an effective tool to drive healthcare innovation and bridge the gap between research findings and implementation.
Dans le contexte de confinement, notre mise en place de visioconférence de résidents auprès des familles et du psychologue traduit la sollicitude des équipes vis-à-vis des résidents. Cependant, le confinement a réactivé les angoisses archaïques emboîtées de l'ensemble du corps social, des soignants, des familles et des résidents en Ehpad, empêchant la prise en compte des adaptations nécessaires et différenciées selon le niveau de dépendance psychique.
Avec le confinement, les individus ont été tenus à distance physique les uns des autres et ont donc connu un isolement sans précédent, que cet isolement soit strictement individuel ou bien collectif. Chacun a donc été appelé à mobiliser ses propres capacités, ses propres ressources pour "tenir" dans un contexte d'isolement relatif et sans pouvoir se déplacer. Les professionnels en charge des personnes vulnérables ont largement utilisé les "technologies de la distance", comme le téléphone, pour maintenir les relations d'aide et de soin.
The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical condition or is terminally ill. These situations have necessitated the use of technology such as the Zoom platform to have difficult conversations concerning complex medical decision-making and goals of care. In cases where the child is deemed at immediate end of life, many facilities will allow both parents to be at the bedside, but no other family or friends that may be integral support to the parents or child. These situations have compelled the use of FaceTime, Zoom, or Skype technology to facilitate real-time support at end of life for these young patients and their caregivers. This article presents a case where technologies such as these were utilized to assist a family in goals-of-care discussions and at end of life for an infant in the intensive care unit at a large urban pediatric care facility during the COVID-19 pandemic.
Mobile applications that facilitate each stage of the advance care planning process (i.e., obtaining knowledge, contemplating options, and acting on decisions) may be one effective way to support patient-centered care and patient autonomy. The purpose of the current review was to identify and evaluate advance care planning mobile applications for patients. Our specific aim was to examine app features, design quality, content, and readability. We searched the Apple iOS and Google Play stores using keywords developed in conjunction with an academic librarian. Two coders with expertise in palliative care applied guidelines from a previous review and used a consensus coding procedure. We also calculated a Flesh Reading Ease score for each app. Nine apps met criteria and could be evaluated. Overall, apps are limited in features and poor in terms of design quality, layout, and functionality. Regarding content, most apps emphasize making decisions or taking action about advance care planning: 6 apps permit users to document a preferred decision maker, and 6 apps offer a mechanism to distribute and share advance care planning documentation. Three apps focus on knowledge about advance care planning, and only 4 support contemplation about advance care planning. Apps range in terms of readability, from very difficult to fairly easy. This review identifies limitations in features, design quality, and content of existing advance care planning mobile apps. We present recommendations based on the results of this review for the development of future advance care planning apps.
Background: Studies have shown that telehealth applications in palliative care are feasible, can improve quality of care, and reduce costs but few studies have focused on user acceptance of current technology applications in palliative care. Furthermore, the perspectives of health administrators have not been explored in palliative care and yet they are often heavily involved, alongside providers, in the coordination and use of health technologies. The study aim was to explore both health care provider and administrator perceptions regarding the usefulness and ease of using technology in palliative care.
Methods: The Technology Acceptance Model (TAM) was used as the guiding theoretical framework to provide insight into two key determinants that influence user acceptance of technology (perceived usefulness and ease of use). Semi-structured interviews (n = 18) with health providers and administrators with experience coordinating or using technology in palliative care explored the usefulness of technologies in palliative care and recommendations to support adoption. Interview data were analyzed using inductive thematic analysis to identify common, meaningful themes.
Results: Four themes were identified; themes related to perceived usefulness were: enabling remote connection and information-sharing platform. Themes surrounding ease of use included: integration with existing IT systems and user-friendly with ready access to technical support. Telehealth can enable remote connection between patients and providers to help address insufficiencies in the current palliative care environment. Telehealth, as an information sharing platform, could support the coordination and collaboration of interdisciplinary providers caring for patients with palliative needs. However, health technologies need to passively integrate with existing IT systems to enhance providers’ workflow and productivity. User-friendliness with ready access to technical support was considered especially important in palliative care as patients often experience diminished function.
Conclusion: Participants’ perspectives of technology acceptance in palliative care were largely dependent on their potential to help address major challenges in the field without imposing significant burden on providers and patients.
Due to isolation and social distancing to maintain patient and staff safety during the COVID-19 pandemic, an alternative to face-to-face interaction was needed. Nurses facilitated critical patient-family communication. Video conferencing applications aided socially distanced families to connect with dying loved ones. This article will explore the use of these popular apps.
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.
While the additional value from adding the option of virtual visits is not in question, numerous issues are raised around how to decide between face-to-face and virtual visits in individual cases and how best to set up such provision within an organisation. With only limited palliative care-specific literature and no time to set up and evaluate pilots, we had to get on and set up a prototype 'virtual visits' model, retro-fitting guidance and a supporting ethical framework. We looked at the issues spanning clinical, ethical and logistics domains; identifying areas of benefit as well as drawbacks, some specific to the rushed implementation because of COVID-19's infective risks and the 'rules' of lockdown, but many are generic areas to help guide longer term service design. Unsurprisingly, it appears clear that a 'one-size-fits-all' mentality is a poor fit for the individualised needs of the heterogeneous palliative care population. Virtual visits have great potential even if they are not a panacea.
Importance: Despite requirements of informed consent, patients with advanced cancer often receive palliative chemotherapy (PC) without understanding that the likelihood of cure is remote.
Objective: To determine whether a PC educational video and booklet at treatment initiation could improve patients’ understanding of its benefits and risks.
Interventions: Regimen-specific PC videos and booklets presenting information about logistics, potential benefits, life expectancy (optional), adverse effects, and alternatives. Videos featured authentic patients sharing diverse experiences. After receiving treatment recommendations, research assistants distributed materials to patients for independent review.
Design, Setting, and Participants: Multicenter randomized clinical trial of patients with advanced colorectal or pancreatic cancer starting first-line or second-line PC in 5 US cancer centers with enrollment from June 2015 to September 2017 and follow-up to December 2019.
Main Outcomes and Measures: The primary outcome was accurate expectations of chemotherapy benefits at 3 months, defined as responding “not at all likely” to “What is your understanding of how likely the chemotherapy is to cure your cancer?” (from the Cancer Care Outcomes Research and Surveillance study). Secondary outcomes included understanding of adverse effects, decisional conflict (SURE test), regret (Decisional Regret Scale), and distress (Functional Assessment of Cancer Therapy–General emotional well-being subscale).
Results: Among 186 patients with advanced colorectal or pancreatic cancer who were starting first-line or second-line PC (94 randomized to usual care, 92 to intervention; mean [SD] age, 59.3 [12.6] [range, 28-86] years; 107 [58%] male; 118 [63.4%] colorectal and 68 [36.6%] pancreatic cancer), most patients wanted “a lot” of information or “as much information as possible” about adverse effects (149, 80.1%), likelihood of cure (148, 79.6%), and prognosis (148, 79.6%). Among the intervention arm, 59 (78%) reviewed the booklet and 30 (40%) reviewed the video within 2 weeks. The primary outcome did not differ between intervention and control arms (52.6%; 95% CI, 40.3%-65.0%; vs 55.5%; 95% CI, 45.1%-66.0%). Accurate adverse effect understanding was more common among intervention than control patients (56.0%; 95% CI, 44.3%-67.7%; vs 40.2%; 95% CI, 29.5%-50.9%; P = .05), although this did not meet the threshold for statistical significance. The intervention did not increase distress, despite frank prognostic information. Other secondary outcomes were similar.
Conclusions and Relevance: Provision of an educational video and booklet did not alter patients’ expectation of cure from PC. Alternative delivery strategies, such as integration with nurse teaching, could be explored in future studies.
BACKGROUND: Digital tools to document care preferences in serious illnesses are increasingly common, but their impact is unknown. We developed a web-based advance directive (AD) featuring (1) modular content eliciting detailed care preferences, (2) the ability to electronically transmit ADs to the electronic health record (EHR), and (3) use of nudges to promote document transmission and sharing.
OBJECTIVE: To compare a web-based, EHR-transmissible AD to a paper AD.
METHODS: Patients with gastrointestinal and lung malignancies were randomized to the web or paper AD. The primary outcome was the proportion of patients with newly documented advance care plans in the EHR at 8 weeks. Secondary outcomes assessed through an e-mail survey included the change in satisfaction with end-of-life plans, AD acceptability, and self-reported sharing with a surrogate.
RESULTS: Ninety-one participants were enrolled: 46 randomly allocated to the web AD and 45 to paper. Thirteen patients assigned to web AD (28%) had new documentation versus 7 (16%) assigned to paper (P = .14). Adjusted for demographic factors and primary diagnosis, the odds ratio of new documentation with web AD was 3.7 (95% CI: 0.8-17.0, P = .10). Satisfaction with advance care planning and AD acceptability were high in both groups and not significantly different. Among patients completing web ADs, 79% reported sharing plans with their caregivers, compared with 65% of those completing paper ADs (P = .40).
CONCLUSION: Web-based ADs hold promise for promoting documentation and sharing of preferences, but larger studies are needed to quantify effects on these intermediate end points and on patient-centered outcomes.
Patient portals can play an innovative role in facilitating advanced care planning (ACP) and documenting advance directives (ADs) among older adults with multiple chronic conditions. The objective of this qualitative sub-study was to (1) understand older adults’ use of an ACP patient portal section and (2) obtain user-design input on AD documentation features. Although some older adults may be reluctant, participants reported likely to use a portal for ADs with proper portal design and support.
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.
In this personal reflection, as a Family Medicine resident at an Academic Center in Northeast Florida, as well as being a chronic illness patient myself, I explore the notion of dying alone and away from family. Although COVID-19 has changed the practice of medicine in many ways, prior to that, and before the instillation of hospital no-visitor policies and stay at home orders, I experienced a case of a patient dying alone in the hospital. These chronicles that case and the impact it had on me afterward in regard to my own family and how I hope the future of medicine can address this.
INTRODUCTION: An electronic resuscitation system, implemented in 2015, within electronic patient records (EPR) at King's College Hospital NHS Foundation Trust was studied, aiming to review and improve decision documentation and communication.
METHOD: The study (January 2018 - June 2018) included all gerontology inpatients with electronic do not attempt cardiopulmonary resuscitation (e-DNACPR) decisions. Cases were identified weekly, followed by retrospective analysis of discharges. Amendments to the electronic system and improvements were implemented between cycles. CYCLE 1: One-hundred and thirty-three patients were included; 85% had an e-DNACPR form; 86% of all forms had senior doctor involvement; 68% evidenced patient/relative discussion; 13% documented multidisciplinary team (MDT) discussion.
INTERVENTIONS: A mandatory 'named nurse' field was added to the form and trust-wide education programme implemented. CYCLE 2: One-hundred and twenty-six patients were included; 100% had an e-DNACPR form; 93% evidenced senior doctor involvement; 71% evidenced patient/relative discussion; 57% documented MDT discussion.
CONCLUSION: Changes to the process and trust-wide education resulted in more robust documentation and communication.
This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scotland, and we describe their experience offering pediatric telehospice. CHAS had strategically planned to implement telehospice, but COVID-19 accelerated the process. The organization evaluated its pediatric clinical and wrap-around hospice services and rapidly migrated them to a virtual environment. They creatively added new services to meet the unique needs of the entire family, who were caring for a child at end of life during COVID-19. CHAS's experience highlights the planning and implementing processes of telehospice with key lessons learned, while acknowledging the challenges inherent in using technology to deliver hospice care.