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1.
Inquiry ; 61: 469580241249435, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38742776

RESUMO

In the context of an aging population, the concept of peaceful end-of-life care has gained increasing significance as an essential component of individuals' fundamental well-being. This underscores the importance of researching and developing hospice care facilities and service systems dedicated to providing a tranquil resting environment. This study focuses on selected hospice care buildings, examining their service model evolution and architectural design. Through case analyses, it explores contemporary hospice care architecture, identifying various types and spatial design features that cater to the end-of-life needs of individuals. The findings guide the design of hospice care buildings in China, emphasizing patient-living areas, medical care zones, and auxiliary functional spaces. This comprehensive approach aims to enhance terminally ill patients' comfort, serenity, and dignity. Moreover, it aims to provide emotional and post-funeral support to terminally ill patients' families.


Assuntos
Arquitetura de Instituições de Saúde , Cuidados Paliativos na Terminalidade da Vida , Humanos , Cuidados Paliativos na Terminalidade da Vida/organização & administração , China , Hospitais para Doentes Terminais/organização & administração , Assistência Terminal
3.
Zhongguo Yi Xue Ke Xue Yuan Xue Bao ; 46(2): 210-216, 2024 Apr.
Artigo em Chinês | MEDLINE | ID: mdl-38686717

RESUMO

Objective To construct a scientific and practical management model of the hospice and palliative care outpatient clinic and provide a reference for the operation and development of the outpatient clinic. Methods The basic framework of the whole process management model of hospice and palliative care outpatient clinic was determined preliminarily by literature analysis,qualitative interviews and experts group meetings.Two rounds of consultation were conducted among 18 experts in hospice and palliative care and medical-nursing combined outpatient service by the Delphi method. Results The questionnaire response rates of the two rounds of expert consultation were both 100% and the authority coefficients of the two rounds of expert consultation were 0.88 and 0.91,respectively.Finally,the whole process management model of hospice and palliative care outpatient clinic was constructed,which was composed of three first-level indicators including staff composition,work structure and effect evaluation,5 second-level indicators and 62 third-level indicators. Conclusion The constructed whole process management model is scientific,innovative and continuous,which can provide a reference for the operation and development of the hospice and palliative care outpatient clinic.


Assuntos
Instituições de Assistência Ambulatorial , Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Instituições de Assistência Ambulatorial/organização & administração , Inquéritos e Questionários , Humanos
5.
Pediatrics ; 148(5)2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34645691

RESUMO

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 .


Assuntos
Cuidados Paliativos na Terminalidade da Vida/organização & administração , Medicaid/organização & administração , Cuidados Paliativos/organização & administração , Patient Protection and Affordable Care Act , Criança , Atenção à Saúde/legislação & jurisprudência , Atenção à Saúde/organização & administração , Georgia , Cuidados Paliativos na Terminalidade da Vida/legislação & jurisprudência , Humanos , Illinois , Louisiana , Medicaid/legislação & jurisprudência , Mississippi , Cuidados Paliativos/legislação & jurisprudência , Participação dos Interessados , Assistência Terminal/legislação & jurisprudência , Assistência Terminal/organização & administração , Estados Unidos
6.
J Hosp Palliat Nurs ; 23(5): 455-461, 2021 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-34010231

RESUMO

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.


Assuntos
COVID-19/prevenção & controle , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Casas de Saúde/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Qualidade de Vida , Idoso , COVID-19/epidemiologia , COVID-19/psicologia , Feminino , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Humanos , Solidão/psicologia , Masculino , Avaliação das Necessidades , Casas de Saúde/organização & administração , Pandemias , SARS-CoV-2 , Isolamento Social/psicologia
8.
Palliat Support Care ; 19(2): 182-186, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33715662

RESUMO

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.


Assuntos
Aniversários e Eventos Especiais , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , COVID-19/epidemiologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Hospitais para Doentes Terminais/organização & administração , Humanos , Estados Unidos
9.
Int J Palliat Nurs ; 27(1): 37-45, 2021 Feb 02.
Artigo em Inglês | MEDLINE | ID: mdl-33629909

RESUMO

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.


Assuntos
Cuidados Paliativos na Terminalidade da Vida/organização & administração , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Modelos de Enfermagem , Cuidados Paliativos/organização & administração , Ocupação de Leitos , Inglaterra , Hospitais para Doentes Terminais , Humanos , Avaliação das Necessidades , Alocação de Recursos , Cuidados Intermitentes/organização & administração
10.
J Hosp Palliat Nurs ; 23(4): 316-322, 2021 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-33605646

RESUMO

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.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Bibliografias como Assunto , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , Assistência Terminal/organização & administração , COVID-19/epidemiologia , COVID-19/terapia , Humanos , Internet , Pandemias , SARS-CoV-2
11.
Public Health Nurs ; 38(3): 459-463, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33111348

RESUMO

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.


Assuntos
COVID-19/epidemiologia , Mão de Obra em Saúde/organização & administração , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , Pandemias , Estudos Transversais , Humanos , Enfermagem em Saúde Pública , Estados Unidos/epidemiologia
12.
Support Care Cancer ; 29(2): 669-678, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32430601

RESUMO

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.


Assuntos
Cuidados Paliativos na Terminalidade da Vida/organização & administração , Neoplasias/terapia , Cuidados Paliativos/organização & administração , Encaminhamento e Consulta , Planejamento Antecipado de Cuidados , Idoso , Feminino , Cuidados Paliativos na Terminalidade da Vida/métodos , Humanos , Masculino , Estadiamento de Neoplasias , Neoplasias/patologia , Pacientes Ambulatoriais , Cuidados Paliativos/métodos
17.
BMC Palliat Care ; 19(1): 128, 2020 Aug 17.
Artigo em Inglês | MEDLINE | ID: mdl-32807160

RESUMO

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.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos na Terminalidade da Vida/normas , Características de Residência/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , China , Estudos Transversais , Feminino , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
18.
Soc Work Health Care ; 59(7): 445-459, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32615064

RESUMO

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.


Assuntos
Continuidade da Assistência ao Paciente/organização & administração , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , Alta do Paciente , Serviço Social/organização & administração , Adulto , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Estados Unidos
19.
Curr Oncol Rep ; 22(10): 99, 2020 07 28.
Artigo em Inglês | MEDLINE | ID: mdl-32719970

RESUMO

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.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , China , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos na Terminalidade da Vida/normas , Direitos Humanos , Humanos
20.
J Pain Symptom Manage ; 60(3): e22-e27, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32525082

RESUMO

BACKGROUND: Increasing hospice need, a growing shortage of hospice providers, and concerns about in-person services because of coronavirus disease 2019 (COVID-19) require hospices to innovate care delivery. MEASURES: This project compared outcomes between hospice reauthorization visits conducted via telehealth and in person. After each visit, providers, patients, and caregivers completed telehealth acceptance surveys, and providers recorded reauthorization recommendations. INTERVENTION: Providers conducted 88 concurrent in-person and telehealth visits between June and November 2019. OUTCOMES: No statistically significant differences in reauthorization recommendations were found between telehealth and in-person visits. Satisfaction with telehealth was high; 88% of patients/caregivers and 78% of providers found telehealth services as effective as in-person visits. CONCLUSIONS/LESSONS LEARNED: Results indicate that telehealth can successfully support clinical decision making for hospice reauthorization. These findings show telehealth to be reliable and acceptable for certain types of hospice care even before COVID-19, which emphasizes its importance both during and after the current public health emergency.


Assuntos
Betacoronavirus , Infecções por Coronavirus/epidemiologia , Atenção à Saúde/organização & administração , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Pneumonia Viral/epidemiologia , Melhoria de Qualidade/organização & administração , Telemedicina/organização & administração , COVID-19 , Humanos , Pandemias , Satisfação do Paciente , Autorização Prévia , SARS-CoV-2
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