Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships.

Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .

Delivering Hospice Care During the COVID-19 Pandemic: Meeting Nursing Home Residents' Needs.

This discussion article highlights the challenges of providing hospice care in nursing homes since the start of the COVID-19 (coronavirus disease 2019) pandemic and illuminates practice changes needed in nursing homes. The article provides an overview of the expectations of hospice care, explains the differences in delivering hospice care during the COVID-19 pandemic, examines social isolation and emotional loneliness and the role of familial caregivers, and describes policy changes related to the COVID-19 affecting hospice care delivery in nursing homes. This article answers the following questions: (1) How did residents receiving hospice care have their needs met during the COVID-19 pandemic? (2) What areas of nursing home care need to be improved through governmental policy and restructuring? This article also summarized the lessons learned as a result of the COVID-19 pandemic and provided practical implications for nursing, specific to changes in hospice care deliveries for nursing home residents.

The inaugural United States World Hospice and Palliative Care Day Celebration: A virtual coming together.

OBJECTIVE: On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5-6, 2021. METHODS: Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses. RESULTS: The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development. SIGNIFICANCE OF RESULTS: Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.

Developing a nursing dependency scoring tool for children's palliative care: the impact on hospice care.

BACKGROUND: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. AIM: To develop a dependency tool that enables the hospice to safely and effectively manage the use of beds for planned short breaks (respite care), preserving capacity for children requiring symptom management and end-of-life care. METHODS: A comprehensive literature review and existing tools were used to inform the development of the Martin House Dependency Tool Framework. Training was provided to staff and the tool was piloted before applying it across the hospice caseload. FINDINGS: The tool has been used on 431 children (93.1% of caseload). The tool enabled consistency of assessment and more effective management of resources, due to a contemporaneous understanding of the clinical needs of those on the caseload. CONCLUSION: The tool has enabled consistent and transparent assessment of children, improving safety, effectiveness and responsiveness, and the management of the workforce and resources.

A Review of Web-Based COVID-19 Resources for Palliative Care Clinicians, Patients, and Their Caregivers.

Palliative and end-of-life care has been pushed to the forefront of medical care during the pandemic caused by the coronavirus-2019 (COVID-19). Palliative care organizations have responded to the growing demand for the rapid dissemination of research, clinical guidance, and instructions for care to clinicians, patients with COVID-19, and their caregivers by creating COVID-19 resource Web pages. Here, end users can access resources that can be updated in real time. These Web pages, however, can be variable in what resources they offer and for whom they are designed for (clinicians, patients, caregivers). Therefore, this project was conducted to consolidate these resources via summary tables of specific contents available through each Web page grouped by palliative care domains (eg, care discussion and planning, communication, symptom management, care access) and to identify the target audience. This environmental scan was conducted by compiling a comprehensive list of COVID-19 resource Web pages of palliative care organizations generated by reviewing previously published research studies and consulting with palliative care research experts. Snowballing techniques were used to identify resource Web pages not captured in the initial scan. Two reviewers independently evaluated eligible Web pages for content via a form developed for the study, and Cohen κ statistic was calculated to ensure interrater reliability. The final κ statistic was 0.76. Of the 24 websites screened, 15 websites met our eligibility criteria. Among the eligible resource Web pages, most (n = 12, 80%) had specific target audiences and care settings, whereas the rest presented information targeted to all audiences. Although 11 Web pages offered resources that addressed all 4 domains, only 1 Web page conveyed all 12 subdomains. We recommend the use of this guide to all frontline clinicians who require guidance in clinically managing patients with COVID-19 receiving palliative care and/or end-of-life care.

The impact of COVID-19 on the hospice and palliative care workforce.

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.

How, when, and why individuals with stage IV cancer seen in an outpatient setting are referred to palliative care: a mixed methods study.

PURPOSE: Early palliative care (PC) for individuals with advanced cancer improves patient and family outcomes and experience. However, it is unknown when, why, and how in an outpatient setting individuals with stage IV cancer are referred to PC. METHODS: At a large multi-specialty group in the USA with outpatient PC implemented beginning in 2011, clinical records were used to identify adults diagnosed with stage IV cancer after January 1, 2012 and deceased by December 31, 2017 and their PC referrals and hospice use. In-depth interviews were also conducted with 25 members of medical oncology, gynecological oncology, and PC teams and thematically analyzed. RESULTS: A total of 705 individuals were diagnosed and died between 2012 and 2017: of these, 332 (47%) were referred to PC, with 48.5% referred early (within 60 days of diagnosis). Among referred patients, 79% received hospice care, versus 55% among patients not referred. Oncologists varied dramatically in their rates of referral to PC. Interviews revealed four referral pathways: early referrals, referrals without active anti-cancer treatment, problem-based referrals, and late referrals (when stopping treatment). Participants described PC's benefits as enhancing pain/symptom management, advance care planning, transitions to hospice, end-of-life experiences, a larger team, and more flexible patient care. Challenges reported included variation in oncologist practices, patient fears and misconceptions, and access to PC teams. CONCLUSION: We found high rates of use and appreciation of PC. However, interviews revealed that exclusively focusing on rates of referrals may obscure how referrals vary in timing, reason for referral, and usefulness to patients, families, and clinical teams.

Análisis de las características de los pacientes con necesidades paliativas en un servicio de medicina interna / Analysis of the characteristics of patients with palliative needs in an internal medicine service

OBJETIVOS: Analizar la prevalencia de pacientes con necesidad de cuidados paliativos (NCP) en pacientes fallecidos en un servicio de medicina interna (MI), así como las diferencias en la asistencia médica recibida en las últimas 48 h de vida en función de la identificación de situación de "asistencia paliativa" en la historia clínica. MATERIAL Y MÉTODOS: Para el primer objetivo se realizó un estudio observacional, transversal y retrospectivo, incluyendo a todos los pacientes que fallecieron en MI del Hospital Vega Baja entre enero y junio 2017. Se consideró que los pacientes tenían NCP si presentaban un NECPAL CCOMS-ICO(c) positivo y una puntuación en índice PALIAR > 7,5 al ingreso. Entre los pacientes con NCP se realizó un estudio de casos-controles en función de su identificación o no en la historia clínica mediante el código diagnóstico "asistencia paliativa". Se analizaron diferencias relacionadas con la asistencia clínica en las últimas 48 h entre ambos grupos. RESULTADOS: Hubo 120 fallecimientos durante el periodo de estudio, lo que supuso un 12 % de los ingresos en MI. De estos, 98 (82 %) presentaban NCP al ingreso. Predominó la trayectoria de "fragilidad" al final de la vida (43,8 %). Los pacientes del grupo de "asistencia paliativa" fueron expuestos en menor proporción a administración de fluidoterapia intensiva (un 36 % frente a un 93,6 %; p < 0,01), antibioticoterapia intravenosa (un 32 % frente a un 93,6 %; p < 0,01), utilización de ventilación mecánica no invasiva (un 2 % frente a un 17 %, p < 0,01), extracciones analíticas (un 24 % frente a un 100 %, p < 0,01). En este grupo de pacientes se administró en una mayor proporción sedación paliativa en las últimas 48 horas (un 90 % frente a un 29,7 %; p < 0,01). CONCLUSIONES: Una elevada proporción de los pacientes que fallecen en los servicios de MI cumplen criterios de NCP desde el ingreso. La no identificación en la historia clínica se ha asociado a mayor número de maniobras diagnóstico-terapéuticas invasivas y menos utilización de sedación paliativa

OBJECTIVES: To analyse the prevalence of patients in need of palliative care (NPC) among people deceased in an Internal Medicine (IM) service, as well as the diferences in medical care received within the last 48 hours depending on wether the need of palliative care is identified in the medical history or not. MATERIAL AND METHODS: An observational, cross-sectional and retrospective study was conducted for the first objective, including all deceased patients in the hospital Vega Baja IM service between January and June 2017. A NECPAL CCOMS-ICO affirmative response and a score in PALIAR Index greater than 7.5 were considered as need of palliative care. A case-control study was subsequently conducted among the patients in NPC, based on the identification or not of a need of palliative care diagnosis in the medical history. The differences in clinical care over the last 48 hours were analysed between both groups. RESULTS: There were 120 deceases during the study period, which represented 12 % of IM service admissions; 98 of these (82 %) presented with NPC on the day of admission. The end-of-life trajectory "frailty" was predominant (43.8 %). The group of patients identified as in NPC were exposed to a lesser extent to intensive fluid therapy (36 % vs 93 %; p < 0.01), endovenous antibiotic therapy (32 % vs 93.6 %; p < 0.01), use of noninvasive mechanical ventilation (2 % vs 17 %, p < 0.01), and blood tests (24 % vs 100 %, p < 0.01). Moreover, this group was offered palliative sedation in a greater proportion (90% vs 29.7 %; p < 0.01). CONCLUSIONS: A high proportion of deceased patients in IM services meet NPC criteria since admission. Failure to identifiy this in the medical history is associated with a greater number of invasive diagnostic and terapeutic maneuvers, and less use of palliative sedation

¿Conocen los profesionales de cuidados intensivos el documento de voluntades anticipadas? Revisión crítica / Are palliative care proffesionals aware of the advanced care planning document? Critical review

JUSTIFICACIÓN: Las instrucciones previas o documento de voluntades anticipadas (IP/DVA) constituyen un conjunto de documentos en los que el paciente puede dejar constancia de cómo desea morir o ser tratado al final de su vida, con el fin de que su voluntad sea respetada. En 1998 surgió una nueva corriente, Advance Care Planning (Planificación Anticipada de las Decisiones). En ella, el DVA aparece como una herramienta, resultado final de un amplio proceso de comunicación que exige a los profesionales sanitarios una formación acorde para proporcionar una mejor atención sanitaria al final de la vida. A este respecto, son varios los estudios que muestran que una inadecuada formación en los cuidados al final de la vida, especialmente en las unidades de cuidados intensivos (UCI), dificulta las habilidades y actitudes en la comunicación, los cuidados y el respeto del DVA con todas las medidas que contempla y, en definitiva, dificulta mantener la dignidad en el proceso de la muerte del paciente. OBJETIVO: Analizar la competencia (conocimientos, habilidades y actitudes) de médicos y enfermeras de las UCI de la Comunidad de Madrid sobre las IP o DVA. DISEÑO: Estudio observacional, descriptivo y transversal. LUGAR Y PERÍODO: Nueve hospitales de la Comunidad de Madrid, entre octubre y diciembre de 2010. PARTICIPANTES: Se encuestó a una muestra de conveniencia cuyos criterios de inclusión fueron todos los médicos y enfermeras de las UCI de adultos de los nueve hospitales. INTERVENCIÓN: Cuestionario ad hoc estructurado, anónimo, autocumplimentado, con variables dicotómicas y escala de tipo Likert. RECOGIDA DE DATOS Y ANÁLISIS: Las variables estudiadas fueron: sociodemográficas, de conocimientos, habilidades y actitudes. Para la entrega de los cuestionarios se contactó con las supervisoras de las unidades y jefes de servicio, se hizo una charla informativa, se colgaron carteles informativos y se repartieron los cuestionarios a través de los investigadores y personas de enlace. Para la recogida de las encuestas se dispuso de urnas ubicadas en las unidades. La entrega de formularios se realizó mediante consentimiento informado previo y el estudio fue aprobado por el Comité de Ética e Investigación Clínica del Hospital Clínico San Carlos de Madrid. as variables cualitativas se describieron mediante frecuencias absolutas y relativas porcentuales de sus categorías, y se buscaron asociaciones con la prueba de ji cuadrado o el test exacto de Fisher. En las variables objeto de análisis se calculó su intervalo de confianza para un error a del 5 %, a través del programa estadístico SPSS V. 18.0. RESULTADOS: Se entregaron 649 encuestas en total y se recogieron 331 al terminar el periodo de recepción (3 meses). La tasa de respuesta fue del 51 %. De las características sociodemográficas destaca que el 73,4 % (243) de los profesionales eran mujeres y el 67,2 % (222) con más de 31 años; del total, el 20,5 % (68) eran médicos y el 79,5 % (263) profesionales de enfermería. Los resultados obtenidos con relación a los conocimientos muestran que el 64,4 % de los encuestados afirma no conocer los diferentes documentos que existen para expresar últimas voluntades. Con relación a las medidas concretas que contemplan las IP, como son la limitación del esfuerzo terapéutico, los cuidados paliativos, la donación de órganos, el rechazo a la obstinación terapéutica y la asignación de un representante legal, tan solo el 9,7 % de los profesionales las conocían todas. El 82,8 % opinaba que el DVA es un instrumento útil para los profesionales en la toma de decisiones. El 50,2 % opinaba que los DVA no se respetan. El 85,3 % de los médicos respetaría el DVA de un paciente en caso de urgencia vital, frente al 66,2 % de las enfermeras (p = 0,007). Solo el 19,1 % de los médicos y el 2,3 % de las enfermeras conocían si los pacientes que llevaban a su cargo poseían un DVA (p < 0,001). CONCLUSIONES: Aunque los profesionales sanitarios muestran conocimientos escasos sobre las IP, presentan una actitud favorable hacia su utilidad. Sin embargo, la mayoría no conocen si los pacientes que están a su cargo poseen un DVA e incluso algunos profesionales, a pesar de conocerlo, en caso de urgencia vital no lo respetarían. Se hace necesaria una mayor formación sobre las IP

Atención primaria y domiciliaria al final de la vida en tiempos de COVID-19 / Primary and home care at the end of life in the COVID-19's time

No disponible

Decisiones de final de vida en tiempos de pandemia / End-of-life decisions during the COVID 19 pandemic

No disponible

Investigation of the awareness of and demand for hospice care and attitudes towards life-sustaining treatment at the end of life among community residents in Hangzhou.

BACKGROUND: To understand the status of residents' awareness of and demand for hospice care services in Hangzhou and to provide a reference for promoting the formulation of hospice care-related policies in China. METHODS: A small cross-sectional survey of 519 adults aged over 40 years old living in the rural-urban fringe and urban area of Xihu District, Hangzhou City, was conducted using convenience sampling and a self-designed questionnaire. The measures assessed awareness of hospice care (13-item scale), attitudes towards life support therapy (3-item scale), and demand for hospice care services (9-item scale). RESULTS: The rate of awareness of hospice care among community residents was 50.30%. A total of 51.0% of residents wanted only comfortable life-sustaining treatment at the end of their lives. The acceptance of hospice care was positively correlated with the degree of understanding (x2 = 18.382, P = 0.001), and residents in the urban area were more likely to prefer hospice care than residents in the urban-rural fringe (x2 = 7.186, P = 0.028). Elderly residents showed a stronger tendency to prefer comfortable life support therapy (x2 = 12.988, P < 0.001). A total of 83.04% of the residents accepted the current necessity for hospice care to be provided in medical institutions. The preferred locations were professional hospice care institutions or general hospitals. A total of 93.64% of the residents agreed that the number of beds in hospice care wards should not exceed 2. In addition, the residents could afford part of the out-of-pocket expenses for hospice care services, with the ability to pay under 200 yuan per day, and the improvement of facilities was expected. CONCLUSIONS: To improve public awareness and acceptance of hospice care and promote healthy development in China, it is necessary to promote hospice care education for everyone.

A Review of the Current State of Hospice Care in China.

PURPOSE OF REVIEW: This review was undertaken to analyze the main reasons behind the limited development of hospice care in China, and to put forward some suggestions. RECENT FINDINGS: Although the Chinese government has increased its support for hospice care in recent years, however, owing to the lack of education around hospice care and the heavy influence of the traditional Chinese Confucian concept of "filial piety," many individuals resist hospice care. Moreover, due to impaired patient rights, inadequate composition of hospice care teams, unbalanced geographical distribution, and limited service range, the development of hospice care in China is hindered. Hospice care education and continued training should be popularized and the government should strengthen the legal structure of the medical system to protect the rights of patients, families, and medical staff to promoting social support for hospice care. Through graded diagnosis and referral systems in medical institutions to integrate medical resources and expand the range of hospice care services.

Live discharge from hospice care: psychosocial challenges and opportunities.

Hospice social workers face many challenges in attempts to replicate or supplement the holistic support and unique services hospice provides for individuals discharged alive. This discontinuity in care can impact the types of supports needed by individuals and caregivers, which may or may not be accessible within their community. Patients and families who have access to community-based palliative care programs following a discharge generally tend to navigate the process with fewer challenges. This qualitative study (N = 24) explored both the challenges of the live discharge process and the opportunities within social work practice in the US. Results from this study emphasize the need for a framework to better approach a live discharge to ensure appropriate supports are accessible for all patients and caregivers. Specifically, results highlight both the concrete and psychosocial challenges in live discharges as a result of tension between current eligibility requirements and individual feelings and needs. Social workers also provided suggestions to improve the live discharge process, including attention to communication and preparation. This paper outlines specific challenges of live discharge from hospice, a framework for understanding presented challenges, and implications for policy and practice.