Palliative care, end-of-life care, and COVID-19: A scoping review / Cuidados paliativos, cuidados de fin de vida y COVID-19: revisión de alcance / Cuidados paliativos, cuidados em fim de vida e COVID-19: uma revisão do escopo

Introducción: La COVID-19 exacerbó el déficit en la prestación de cuidados paliativos y de fin de vida y aumentó la sobrecarga de los servicios de salud, pero se desconoce la extensión de la literatura sobre dicho tema. Objetivo: Describir la evidencia sobre la prestación de cuidados paliativos y de fin de vida en adultos durante la pandemia de COVID-19. Materiales y métodos: Revisión de alcance según el marco metodológico de Arksey y O'Malley. La búsqueda se realizó en inglés y español; en PubMed, Scielo, la Biblioteca Virtual en Salud, y la base de datos de investigación en Coronavirus. Las publicaciones se filtraron por título, resumen y lectura completa. Los resultados se sintetizaron de acuerdo con la técnica "charting". Resultados: Se incluyeron 51 publicaciones. En total emergieron cinco categorías: 1) caracterización de los cuidados paliativos, 2) planificación avanzada de cuidados, 3) acompañamiento a familiares y seres queridos, 4) telesalud, 5) rol de enfermería en los cuidados paliativos. Discusión:: El coste social de la pandemia se refleja en el aumento en la carga de unidades de cuidados paliativos, mayor porcentaje de mortalidad y la disminución de la edad promedio de fallecimiento. Futuros estudios deben abordar el impacto psicosocial en los seres queridos de los pacientes, así como el impacto a nivel comunitario. Conclusión: Los cuidados paliativos y de fin de vida constituyen una herramienta fundamental para la atención de pacientes con COVID-19. La pandemia potenció el desarrollo de las tecnologías de la información y las comunicaciones para la prestación de cuidados paliativos.

Introduction:COVID-19 exacerbated the deficit of palliative and end-of-life care provision and increased healthcare services' burden, but the extent of the literature on that topic is unknown. Objetive: To describe the evidence of palliative and end-of-life care provision in adults during the COVID-19 pandemic. Materials and Methods:The scoping review was performed according to Arksey and O'Malley's methodological framework. The search was conducted in English and Spanish, in PubMed, SciELO, the Virtual Health Library, and the Coronavirus research database. The articles were filtered by title, abstract, and full text. The results were summarized according to the charting technique. Results: Fifty-one publications were included. A total of five categories emerged: 1) Palliative care characteristics, 2) advanced care planning, 3) support for family members and loved ones, 4) telehealth, and 5) nursing role in palliative care. Discussion:The social cost of the pandemic is reflected in the increased burden of palliative care units, higher mortality rates, and the decreased average age of death. Future studies should address the psychosocial impact of COVID-19 on patients' loved ones, as well as the impact at the community level. Conclusions: Palliative and end-of-life care is an essential tool for COVID-19 patients care. The pandemic has enhanced the development of information and communication technologies to deliver palliative care.

Introdução: A COVID-19 exacerbou o déficit na prestação de cuidados paliativos e em fim de vida e aumentou a sobrecarga sobre os serviços de saúde, mas a extensão da literatura sobre tal tópico é desconhecida. Objetivo: Descrever as evidências sobre a prestação de cuidados paliativos e de fim de vida em adultos durante a pandemia da COVID-19. Materiais e Métodos: Revisão do escopo de acordo com a estrutura metodológica de Arksey e O'Malley. A pesquisa foi realizada em inglês e espanhol; PubMed, Scielo, a Biblioteca Virtual de Saúde e o banco de dados de pesquisa do Coronavirus. As publicações foram filtradas por título, resumo e texto completo. Os resultados foram sintetizados de acordo com a técnica gráfica. Resultados: 51 publicações foram incluídas. No total, surgiram cinco categorias: 1) caracterização dos cuidados paliativos, 2) planejamento de cuidados avançados, 3) acompanhamento de parentes e entes queridos, 4) telesaúde, 5) papel de enfermagem nos cuidados paliativos. Discussão: O custo social da pandemia se reflete no aumento da carga sobre as unidades de cuidados paliativos, maiores taxas de mortalidade e uma diminuição da idade média de morte. Estudos futuros devem abordar o impacto psicossocial sobre os entes queridos dos pacientes, bem como o impacto a nível comunitário. Conclusões: Os cuidados paliativos e de fim de vida são uma ferramenta fundamental para o cuidado de pacientes com COVID-19. A pandemia tem melhorado o desenvolvimento das tecnologias de informação e comunicação para o fornecimento de cuidados paliativos.

The underrepresentation of palliative care in global guidelines for responding to infectious disease outbreaks: a systematic narrative review.

BACKGROUND: The importance of palliative care provision has been highlighted in previous humanitarian emergencies. This review aimed to examine the breadth and depth of palliative care inclusion within global guidelines for responding to infectious disease outbreaks. METHODS: The review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Electronic searches of MEDLINE, Embase, Cumulative Index to Nursing and Allied Health, PsychInfo and grey literature were performed. Inclusion criteria were guidelines (recommendations for clinical practice or public health policy) for responding to infectious disease outbreaks in the general adult population. Results were limited to the English language, between 1 January 2010 and 17 August 2020. Analysis of the included articles involved assessing the breadth (number of palliative care domains covered) and depth (detail with which the domains were addressed) of palliative care inclusion. RESULTS: A total of 584 articles were retrieved and 43 met the inclusion criteria. Two additional articles were identified through handsearching. There was limited inclusion of palliative care in the guidelines examined. CONCLUSIONS: There is an opportunity for the development of guidelines that include information on palliative care implementation in the context of infectious disease outbreaks in order to reduce the suffering of key vulnerable populations worldwide.

Academic-Clinical Collaborations to Build Undergraduate Nursing Education in Hospice and Palliative Care.

With the current shortage of hospice/palliative care (HPC) workforce, there is an urgent need to train a generation of nurses with clinical competency in HPC to ensure equitable access and optimal care for patients living with serious illness or at the end of life. The recent demand for HPC teaching in nursing education calls for innovation in establishing clinical placements. Palliative care nursing experts in New York State were surveyed between June and August 2022 about facilitators of academic-clinical partnerships between nursing schools and clinical settings. Inductive content analysis of open-ended responses revealed six major interconnected themes: (a) Increase Awareness of HPC in the Nursing Program, (b) Build a Relationship With Administrators, (c) Look Beyond Acute Care Partnerships, (d) Offer Incentives, (e) Develop Direct Care Experiential Opportunities, and (f) Develop Non-Direct Care Experiential Opportunities. Findings provide rich insights into key considerations for successful collaboration between nursing schools and clinical sites. [Journal of Gerontological Nursing, 49(6), 13-18.].

Enhancing Care of Older Adults Through Standardizing Palliative Care Education.

Nursing skill in caring for persons with serious chronic illness is increasingly in demand as the proportion of older adults in the United States increases. There is robust evidence that palliative care education among health care providers influences the reduction of death anxiety and avoidance behavior, while positively impacting self-efficacy and comfort, when caring for persons with serious illness or those nearing death. The international recognition of access to palliative care as a universal human right drives the need for education to adequately prepare nurses who have not been properly prepared for this work. The development of national competencies in palliative care education for nurses is an important step in synthesizing and disseminating available evidence in support of palliative care nursing education. These recently published competencies can lead to policy innovations at local, state, and national levels. Identifying competencies that lead to more clearly defined curricula will ultimately improve standardizing education and improve nursing practice in caring for older adults with serious chronic illness and their families. [Journal of Gerontological Nursing, 49(6), 6-12.].

Clinical usefulness of the Patient-Generated Subjective Global Assessment and modified Glasgow Prognostic Score in decision making concerning the indication of enteral nutritional therapy in patients with incurable cancer receiving palliative care.

OBJECTIVES: This study aimed to identify the clinical usefulness of assessing nutritional status using validated tools for the indication of enteral nutrition for patients with incurable cancer in palliative care. METHODS: In this prospective cohort study, patients were assessed for nutritional risk using the Patient-Generated Subjective Global Assessment and for cancer cachexia (CC) using the modified Glasgow Prognostic Score upon enrollment and after ∼30 d. The outcome was stable or improved Karnofsky Performance Status. Logistic regression models were used, providing the odds ratio (OR) and 95% confidence interval (CI). RESULTS: A total of 180 patients participated. The only nutritional status parameter that was associated with function was CC. The less severe the CC, the more likely Karnofsky Performance Status was to remain stable or improve over 30 d (non-cachectic: OR = 1.95; 95% CI, 1.01-3.47; malnourished: OR = 1.06; 95% CI, 1.01-1.42). Furthermore, white skin color (OR = 1.79; 95% CI, 1.04-2.47), higher educational level (OR = 1.39; 95% CI, 1.13-2.78), and inadequate calorie intake (OR = 1.96; 95% CI, 1.02-2.81) were also associated with the outcome. CONCLUSIONS: Using the modified Glasgow Prognostic Score to identify the existence and severity of CC, which is associated with function, has the potential to help clinical decision making concerning the indication of enteral nutrition in patients with incurable cancer receiving palliative care.

[Foot reflexology for caregivers in palliative care]. / La réflexologie plantaire au service des soignants de soins palliatifs.

Foot reflexology is the use of massage and acupressure techniques on the feet, which represent each organ of the human body. The reflexologist knows precisely the anatomy of the body and the reflex points on the feet in order to relieve and treat the person's problems. A team from the University Hospital of Clermont-Ferrand shares a very positive experience, unfortunately interrupted by the Covid-19 health crisis.

Serious illness care quality during COVID-19: Identifying improvement opportunities in narrative reports from a National Bereaved Family Survey.

BACKGROUND: COVID-19 significantly impacted care delivery to seriously ill patients, especially around including family and caregivers in patient care. AIM: Based on routinely collected bereaved family reports, actionable practices were identified to maintain and improve care in the last month of life, with potential application to all seriously ill patients. DESIGN: The Veterans Health Administration's Bereaved Family Survey is used nationally to gather routine feedback from families and caregivers of recent in-patient decedents; the survey includes multiple structured items as well as space for open narrative responses. The responses were analyzed using qualitative content analysis with dual review. SETTING/PARTICIPANTS: Between February 2020 and March 2021, there were 5372 responses to the free response questions of which 1000 (18.6%) responses were randomly selected. The 445 (44.5%) responses from 377 unique individuals included actionable practices. RESULTS: Bereaved family members and caregivers identified four opportunities with a total of 32 actionable practices. Opportunity 1: Facilitate the use of video communication, included four actionable practices. Opportunity 2: Provide timely and accurate responses to family concerns, included 17 actionable practices. Opportunity 3: Accommodate family/caregiver visitation, included eight actionable practices. Opportunity 4: Offer physical presence to the patient when family/caregivers are unable to visit, included three actionable practices. CONCLUSION: The findings from this quality improvement project are applicable during a pandemic, but also translate to improving the care of seriously ill patients in other circumstances, such as when family members or caregivers are geographically distant from a loved one during the last weeks of life.

Encountering suffering in digital care: a qualitative study of providers' experiences in telemental health care.

BACKGROUND: Encountering patients who are suffering is common in health care, and particularly when providing mental health care. Telehealth technologies are increasingly used to provide mental health care, yet little is known about the experiences of providers when encountering patients who are suffering within remote care. The present study explored health care providers' lived experiences of encountering patient suffering during telemental health care. METHODS: A qualitative phenomenological approach was used to uncover participants' experiences. In-depth interviews were conducted with a purposive sample of physicians, psychologists, and therapists who used telemental health in varied clinical practices in Sweden. Data were analyzed using descriptive phenomenology. RESULTS: Telehealth care with patients who were suffering was experienced by providers as loose connections, both literally in compromised functioning of the technology and figuratively in a compromised ability connecting emotionally with patients. Providers' lived experiences were explicated into the following aspects: insecurity in digital practice, inaccessibility of the armamentarium, and conviction in the value of telehealth care. Interpersonal connection between patient and provider is necessary. Worry and guilt arose for providers with fears that technology would not work, patient status was deteriorated, or the care needed could not be delivered. Providers overcame barriers in telehealth encounters, and expressed they perceived that patients appreciated the care received, and through it found relief. CONCLUSIONS: This study brings an understanding of experiences in providing telemental care for patients who are suffering. Providers experience challenges in connecting with patients, and in accessing tools needed to enable reaching the goals of the caring encounter. Efforts to ensure functioning of technology, comfort with its use, and accessibility of tools might be some accommodations to support providers for successful and rewarding telehealth care encounters.

Evaluation of an Emergency Department-based Palliative Care Extender Program on Hospital and Patient Outcomes.

BACKGROUND: Boston Medical Center (BMC), a safety-net hospital, treated a substantial portion of the Boston cohort that was sick with COVID-19. Unfortunately, these patients experienced high rates of morbidity and mortality given the significant health disparities that many of BMC's patients face. Boston Medical Center launched a palliative care extender program to help address the needs of critically ill ED patients under crisis conditions. In this program evaluation our goal was to assess outcomes between those who received palliative care in the emergency department (ED) vs those who received palliative care as an inpatient or were admitted to an intensive care unit (ICU). METHODS: We used a matched retrospective cohort study design to assess the difference in outcomes between the two groups. RESULTS: A total of 82 patients received palliative care services in the ED, and 317 patients received palliative care services as an inpatient. After controlling for demographics, patients who received palliative care services in the ED were less likely to have a change in level of care (P<0.001) or be admitted to an ICU (P<0.001). Cases had an average length of stay of 5.2 days compared to controls who stayed 9.9 days (P<0.001). CONCLUSION: Within a busy ED environment, initiating palliative care discussions by ED staff can be challenging. This study demonstrates that consulting palliative care specialists early in the course of the patient's ED stay can benefit patients and families and improve resource utilization.

Mental and Physical Well-Being and Burden in Palliative Care Nursing: A Cross-Setting Mixed-Methods Study.

The working routines in palliative care nursing are associated with a variety of causes of stress with regional and setting-specific differences in Germany. This mixed-methods study aimed to investigate the mental and physical well-being among nurses in German palliative and hospice care and to gain a deeper understanding of procedural and structural aspects that may influence the mental and physical burden in palliative nursing care. The mixed-methods approach combined qualitative interviews, (n = 16) an online survey (n = 101), and subsequent data validation in a focus group (n = 6). Interview and focus group data were analysed using structured qualitative content analysis. Survey data were analysed using descriptive statistics and an explorative quantitative analysis. Moderate to very high levels of stress were reported across all settings, but were highest for nurses in specialized outpatient palliative care settings. Underlying causes of stress related to working conditions in the nursing profession across all palliative care settings were poor working hours, perceived inadequate remuneration, and high demands for documentation. To ensure sustainable high-quality palliative care, adaptations to working conditions that target causes of stress and burden in palliative care nurses are required.

Reimagining the inpatient palliative care consult: lessons from COVID-19.

As the number of inpatients with advanced age and chronic conditions rises, so too does the need for inpatient palliative care (PC). Despite the strong evidence base for PC, less than 50% of all inpatient PC needs are met by inpatient consults. Over the past several months in epicenters of the COVID-19 pandemic, PC providers have responded to the increased need for PC services through innovative digital programs including telepalliative care programs. In this article, we explore how PC innovations during COVID-19 could transform the PC consult to address workforce shortages and expand access to PC services during and beyond the pandemic. We propose a 3-pronged strategy of bolstering inpatient telepalliative care services, expanding electronic consults, and increasing training and educational tools for providers to help meet the increased need for PC services in the future.

Palliative Renal Care and the Covid-19 Pandemic.

INTRODUCTION: Palliative care is an approach aimed at relieving suffering, controlling symptoms and seeking to improve quality of life. It must be offered in conjunction with standard treatment for any disease that threatens the continuation of life, such as a Covid-19 infection. DISCUSSION: The bioethical principles and strategies used by palliative medicine can assist nephrologists in the care of patients with renal dysfunction, who face the difficulties of isolation at the beginning and follow-up of dialysis in outpatient treatment, and those who are at risk for a more serious disease progress. Some of them: - a Shared decision making, which enables the patient and family to participate as facilitators in the systematization of the team's reasoning, in addition to respecting the principle of autonomy; - Symptom Management: which should be a priority to ensure relief of suffering even in times of social isolation; - Communication skills: making it possible to alleviate suffering in announcing bad news or complex decisions through communication techniques;; - Bereavement assistance: which in acute situations such as the pandemic, causing unexpected losses, the importance of sympathy from healthcare professionals becomes even greater. CONCLUSION: The principles of palliative care are essential to face the challenges of a planet-wide crisis, which raises human suffering in all dimensions, and which requires the construction of strategies that can keep patients assisted, comfortable and with measures proportional to their clinical condition and preferences.

'Now I can train myself to be with death': a phenomenological study with young doctors in care homes supported by a palliative care unit during the second wave of the pandemic in Italy.

OBJECTIVE: During the second wave of the COVID-19 pandemic, one of the organisational strategies established by the Italian National Health System was the special units for continuity of care (SUCCs). In the province of Ravenna, those units enrolled novice doctors to care for elderly patients with COVID-19 in care homes (CHs). The local palliative care (PC) unit decided to offer consultations and support to them. This study aimed to comprehend the experience of young doctors who asked for consultations when facing, during their first early years of practice, complex situations. DESIGN: We conducted a qualitative study employing a phenomenological approach and in-depth interviews. PARTICIPANTS: We involved 10 young doctors who worked in Italian SUCC during the pandemic and used a PC consultation support service. RESULTS: What describes our participants' experience is related to four main themes: (1) reducing distances, (2) perceiving medical futility and improvising, (3) being supported to learn how to be with death and (4) narrowed timing to humanise care. The pandemic was, for our participants, a moment of reflection and critique on the skills acquired during the university course. It was a strong experience of human and professional growth that helped them reshape and deepen their role and skills, incorporating the approach of PC into their professional identity. CONCLUSIONS: Integration between specialists and young doctors with an early entry into the workforce during the pandemic in CHs set out a 'shift' to a proactive and creative approach through a new awareness of professional and personal roles in doctor-patient relations. The continuity of care models should be rethought by integrating CHs and PC. Adequate PC training for young doctors (at pregraduate and postgraduate levels) can change doctors' vision and daily practice in assisting patients at the end of life.

[The limits of internal medicine]. / Die Grenzen der Inneren Medizin.

"The limits of internal medicine" was the congress motto of the 128th Congress of the German Society of Internal Medicine in Wiesbaden in 2022. In his presidential address Prof. Lerch focused on four aspects of this motto: physician-assisted suicide, lessons from the corona pandemic, deficits in the digitalization of the German healthcare system and the German Sonderweg in applying EU regulations for patient data protection. Using data from Canada, Switzerland and the Netherlands, where different forms of physician-assisted suicide are practiced, Prof. Lerch appealed to internists, specifically in family practices, to confront this issue in view of a German Supreme Court ruling. With respect to the development of the corona pandemic he discussed the root causes of the opposition to vaccination in parts of society as well as the question why non-clinically active and only few clinical disciplines have shaped the discussion about corona protection measures in Germany. Another focus of his speech was the insufficient digital maturity of the German healthcare system, which clearly lags behind other countries with respect to digital transformation. Physicians need to become more involved in the digital transformation in order to reorganize the healthcare system for the benefit of the patients. The German Sonderweg in the application of the General Data Protection Regulation (GDPR) requires a new legal framework to enable a pragmatic and progressive use of patient data for medical research and patient safety.

Palliative care teaching in the new internal medicine curriculum: Project ECHO-an innovative approach to postgraduate education.

BACKGROUND: The Internal Medicine Training (IMT) Programme is an evolution of Core Medical Training introduced in 2019. The IMT curriculum places an increased emphasis on palliative care; however, access to palliative care training is variable. Project ECHO (Extension of Community Healthcare Outcomes) develops communities of practice and is a valuable tool for medical education. We report on an evaluation of Project ECHO to deliver palliative medicine training across a geographically large deanery in the North of England. METHODS: The Project ECHO training programme involved multipoint video technology, telementoring, expert talks and case-based discussions over six sessions, and was fully mapped to the palliative care component of the IMT curriculum. We collected data particularly around attendance and self-reported confidence and knowledge. RESULTS: By creating a community of practice, we provided virtual placements and over 9 hours of virtual direct contact with palliative medicine consultants; and in total, 921 individual attendances occurred, with 62% attending all six sessions. The course was associated with an increase in self-reported confidence and high satisfaction. DISCUSSION: Project ECHO is an effective method of delivering teaching to trainees across a large geographical area. Course evaluation shows outstanding results in trainee satisfaction, confidence, knowledge, patient care, clinical skills and reduction in fear when managing death and dying.