Palliative Care Organization Research Articles

POS-672 CONSERVATIVE AND PALLIATIVE CARE OF PATIENTS WITH ADVANCED CHRONIC KIDNEY DISEASE

The number of patients with advanced chronic kidney disease who opt for supportive therapy or withdraw from dialysis is increasing world widely. In our research we verified the knowledge of legal regulations, the attitude towards conservative therapy, dialysis withdrawal and palliative care in patients with advanced chronic kidney disease in Slovenia. The research was performed among nephrologists and nephrology fellows using an electronic survey based on modified European research »European Renal Best Practice Survey«. Forty-one nephrologists and nephrology fellows of the Slovenian Society of Nephrology participated in the research, 59% were female, the majority (55%) aged 35 to 50 with more than 10 years of service (57%) in the inpatient setting (50%). 39% of the participants knew that the right to palliative care in our country has a legal background and 32% were familiar with the legal possibility of advanced patients will on intensity of treatment. According to participants opinion, 79% of their patients were not familiar with the option of advanced will although the great majority of participants were familiar with the definition of patient autonomy. 11% of participants reported withdrawal from dialysis on the request of the patient. In 86% of participants the decision on dialysis withdrawal was based on the proposition of the patient or his relatives (76%) after detailed consultation with other nephrologists. Only 48% of nephrologists would respect the patient advanced will to withdraw from dialysis if his relatives opposed. 84% of the participants believed that health professionals are not familiar enough with the organization of palliative care in their region, although 57% of their patients were discharged in their home environment. 59% of nephrologists attended education on the topic of palliative care, mostly on national meetings (88%). We need to improve the knowledge of nephrologists on supportive and palliative care in nephrology, their communication skills and knowledge on legal patients’ rights to be able to fully respect autonomy of patients, based on timely extensive education of patients considering their therapeutic options and advanced will.

Supportive care for cancer patients: a survey of available settings and current practices in Belgium.

The increasing number of cancer diagnoses and deaths underlines the importance of supportive and palliative care. It is defined as "all the care and the support necessary for patients throughout their illness." To evaluate the current status of the supportive and palliative care organization in Belgium. The Belgian Society of Medical Oncology (BSMO) supportive care task force conducted an observational study by sending a 31-point questionnaire to medical doctors responsible for the supportive care units of university, public, or private hospitals in Belgium. Thirty centers completed the questionnaire, of which 12 were university hospitals. Inpatient supportive care units are available in more than 50% of the centers, whereas outpatient supportive care is less available in Brussels than in Flanders and Wallonia. Multidisciplinary teams or specific units dedicated exclusively to supportive care are represented less frequently in all 3 areas of Belgium. Intensive care units for cancer patients are even scarcer. In terms of research and teaching, active research is present in 10 (33%) centers. Of complementary and alternative medicine modalities available to cancer patients, mindfulness and massage are offered most frequently. Reference guidelines for various symptoms are widely used in Flanders and Brussels but less so in Wallonia. This is the first in-depth survey in Belgium that shows the limited availability of dedicated supportive care services throughout the country. This represents an unmet need for Belgian cancer patients. Within the BSMO supportive care task force, there is a great opportunity to expand services and develop active research in the area of supportive and palliative care.

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.

O impacto biopsicossocial em enfermeiros frente ao processo De morte e morrer de pacientes terminais

Objetivo: Analisar as produções científicas sobre o impacto biopsicossocial em enfermeiros frente ao processo de morte e morrer de pacientes terminais em seu ambiente laboral. Metodologia: Trata-se de uma revisão integrativa que inclui artigos originais identificados nas bases de dados: Literatura Latino Americana e do Caribe em Ciências da Saúde e Banco de dados em Enfermagem, acessadas via Biblioteca Virtual da Saúde; e Medical Literature Analysis and Retrieval System Online, via Pubmed. Incluíram-se artigos primários publicados nos idiomas português, inglês e espanhol, após a Resolução Nº 41, de 31 de Outubro de 2018, que dispõe sobre as diretrizes para a organização dos cuidados paliativos, à luz dos cuidados continuados integrados, no âmbito Sistema Único de Saúde. E foram excluídos editoriais, teses, dissertações, artigos de revisão. Resultados: A amostra foi composta por 7 artigos publicados em revistas nacionais e internacionais, nos anos de 2018, 2019 e 2020, com predomínio da abordagem metodológica qualitativa. Os impactos para o profissional Enfermeiro são descritos com ênfase para o adoecimento mental. Conclusão: Os estudos mostram que os impactos para o Enfermeiro são relatados como sentimentos de angústia, impotência, medo, dor, revolta, frustação e o sofrimento moral vividos pelos profissionais de enfermagem frente ao cuidado de pacientes terminais.
 Palavras-chaves: Enfermagem; Cuidados Paliativos; Impacto Psicossocial; Qualidade de Vida Relacionada à Saúde.

Palliative care organization in the light of updated legislation

The article provides a detailed analysis of the main palliative care organization in the Russian Federation provisions in the light of the new federal legislation amendments approved in 2019, the work collaboration of primary and specialized palliative care units, as well as interaction with the social care institutions and organizations; the issue of storage and use of narcotic and psychotropic drugs by citizens living in inpatient social care organizations purchased with prescriptions is being discussed.

Social Justice, Organizational Commitment and Job Satisfaction for Palliative Care Social Workers

ABSTRACT Job satisfaction and organizational commitment are critical factors in retention of qualified and experienced social workers. Palliative care organizations may struggle to retain social workers who question if the organization’s practices are in conflict with social work values of social justice and equity. Improving palliative care social workers’ job satisfaction and organizational commitment can be a pathway to keeping palliative care social workers in their jobs. Aims of this study were to explore how social justice influences palliative care social workers’ organizational commitment and intention to stay in their jobs, and if these associations were mediated by job satisfaction. A cross-sectional, survey design, administered online, with a sample of 127 palliative care social workers was used. Findings suggest that job satisfaction mediates the relationship between an organization that establishes a norm of social justice and organizational commitment, this in turn, makes palliative care social workers less likely to want to leave their jobs.

Palliative, Hospice, and End-of-Life Care and OBRA Regulations

Palliative, Hospice, and End-of-Life Care and OBRA Regulations

Religious/Spiritual Referrals in Hospice and Palliative Care

This study examines the religious/spiritual referral patterns in hospice and palliative care. Religion and death are two highly intersected topics and albeit often discussed together in hospice and palliative care, little is known about how professionals respond to religious/spiritual needs of patients/families/friends and in relation to the chaplaincy team. By means of an in-depth interviewing method, this paper reports on data from 15 hospice and palliative care professionals. Participants were recruited from across five hospice and palliative care organisations, and the data was managed and analysed with the use of NVivo. Largely, participants were keen to refer patients/families/friends to the chaplaincy team, unless the former’s faith or lack thereof did not match the chaplains, in which case referrals to a religious leader in the community were favoured. This shed light to the tendencies to homogenise religious/spiritual beliefs. The paper concludes with some implications for practice and research.

A Nordic survey of the management of palliative care in patients with head and neck cancer

BackgroundThe five Nordic countries with a population of 27M people form a rather homogenous region in terms of health care. The management of Head and Neck Cancer (HNC) is centralized to the 21 university hospitals in these countries. Our aim was to survey the current status of organization of palliative care for patients with HNC in the Nordic countries as the field is rapidly developing.Materials and methodsA structured web-based questionnaire was sent to all the Departments of Otorhinolaryngology—Head and Neck Surgery and Oncology managing HNC in the Nordic countries.ResultsAll 21 (100%) Nordic university hospitals responded to the survey. A majority (over 90%) of the patients are discussed at diagnosis in a multidisciplinary tumor board (MDT), but the presence of a palliative care specialist is lacking in 95% of these MDT’s. The patients have access to specialized palliative care units (n = 14, 67%), teams (n = 10, 48%), and consultants (n = 4, 19%) in the majority of the hospitals.ConclusionThe present results show that specialized palliative care services are available at the Nordic university hospitals. A major finding was that the collaboration between head and neck surgeons, oncologists and palliative care specialists is not well structured and the palliative care pathway of patients with HNC is not systematically organized. We suggest that early integrated palliative care needs to be included as an addition to the already existing HNC care pathways in the Nordic countries.

Independent non-medical prescribing in a nurse-led hospice: strengths and challenges

Independent non-medical prescribing has been a safe, effective and economical initiative for St Teresa's nurse-led hospice, as indicated by yearly audits of prescribing charts and incident reports. However, there are several challenges involved, some shared with other palliative care organisations and some unique to this hospice. These include accessing consistent evidence, especially in light of high volumes of off-licence or unlicensed prescribing with limited stock of medication, and pro-actively pursuing tailored Continuous Professional Development. These challenges, though sometimes complex, are not insurmountable for the experienced non-medical prescribers in this non-conventional setting.

Hausärztliche Begleitung in der letzten Lebensphase (HA-BeL): Systematische Entwicklung und Anpassung der deutschsprachigen Version des General Practice End of Life Care Index

In Germany, no instruments exist to evaluate the practice and organisation of palliative care in general practice. The aim of this project was the systematic development and adjustment of a German version of the General Practice End of Life Care Index (GP-EoLC-I). The translation and adaptation process followed the TRAPD model: translation, review, adjudication, pre-test, documentation. The process was completed by a back translation, a first pre-test and a feasibility study with general practitioners. Nine of the ten general practitioners invited took part in the pre-test (56% female, median age 55 years, range 40-75). The pre-test showed a median processing time of 15minutes. 17 general practitioners (59% female, median age 53 years, range 39-69) took part in the pilot study. Adaptation to the German context was necessary for two of the 25 items. In the pre-test and in the pilot study only single values were missing. With the exception of the two adapted items, the back translation showed a high level of consistency with the original version of the questionnaire. The systematic development and testing of the questionnaire "Hausärztliche Begleitung in der letzten Lebensphase" (HA-BeL) as well as its adaptation for the primary care setting in Germany was successfully completed in a multi-stage process using an interdisciplinary and participatory approach. The results of this empirical testing provide guidance for expenditure and reasonableness, objectivity of application and content-related consistency of the HA-BeL index. The HA-BeL index is the first self-assessment instrument to be used by general practitioners to evaluate practice and organisation of palliative care in general practice in Germany.

Analysis of hospice duration and metrics in cancer patients in rural Appalachia.

e24006 Background: Several factors influence the duration of hospice care/average length of stay (ALOS) for cancer patients choosing hospice, including patient and family acceptance of hospice, availability of services, demographics, provider preferences, advances in treatment options, and type of cancer. Cancer diagnoses account for 30.1 % of Medicare hospice beneficiaries. Based on the national hospice and palliative care organization (NHPCO) summary released in 2019 the median length of stay on hospice for cancer patients is 19 days. The purpose of this study is to analyze the length of stay on hospice, and other metrics in a rural Appalachian community given the paucity of published data. Methods: A retrospective chart review (IRB approved) of all adult patients enrolled in three different hospice agencies (total 106) over two years (2016 and 2017) in a rural community in Southern Appalachia. We looked at the interval from metastatic diagnosis to hospice admission, interval from last oncological treatment to hospice admission and length of stay on hospice. Results: Medianinterval from metastatic diagnosis to hospice admission was 143 days (range 6-2948 days). The median interval from the last oncological treatment to hospice admission was 35 days (interquartile range 15-83 days). The median length of stay on hospice was 24 days (interquartile range 7.5 to 52.5 days). ALOS for patients with prostate, colorectal, breast and lung cancer were 77.33, 103.8 (skewed by a single patient-741 days, minus outlier-33 days), 38.9, 31.70 days, respectively. Conclusions: Few studies in the past have focused on the length of stay on hospice and even fewer have analyzed metrics as noted in our study. The median duration of hospice care in this community (24 days) was modestly better than the national data (19 days). This study provides unique data on median interval from the last treatment to hospice admission (35 days) is longer than the time on hospice (24 days). We infer socio cultural barriers to hospice acceptance in the Appalachian community and a need for education. It may be invaluable to assess if similar barriers to acceptance of hospice are a factor in other communities and would be worthy of further study and research.

Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources

ContextPediatric palliative care (PPC) can improve quality of life of children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, and PPC resources and personnel are often inequitably distributed toward urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access. ObjectivesA CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services. MethodsThe CNA used a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion article, entitled “A methodological approach to conducting a statewide community needs assessment of pediatric palliative care and hospice resources.” ResultsFour key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility and high importance recommendations included expanding PPC education for both providers and patients and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services. ConclusionIn Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.

Outpatient Liaison Palliative Care for Children: Two Years' Experience of Non-profit Charitable Organization

The system of palliative medical care for children in Russia has been actively developing in recent years. It is important to discuss the principles of outpatient palliative care organization in different regions of the country. The experience of creation and operating of outpatient liaison pediatric service based on non-profit charitable foundation is described.

Structure and organisation of palliative care for children in Krasnodar Krai

Palliative care is aimed at enhancing the quality of life of patients living with life-threatening conditions and their families. According to the World Health Organization, about 40 million people require palliative care every year. Out of these people, 78% reside in low- and middle-income countries. 89% of children requiring palliative care are from low- and middle-income countries, with half of these children living on the African continent. Such a widespread prevalence and need for palliative care is expected to grow due to the increasing number of chronic non-communicable diseases, and the provision of palliative care at early stages reduces the frequency of unnecessary hospitalisations and the use of medical services.Aim. To assess the structure and organisation of palliative care for children in Krasnodar Krai.Material and methods. The study was conducted on the basis of medical institutions located in Krasnodar and other cities in Krasnodar Krai (Apsheron, Vyselkovsky, Gelendzhik, Kavkazsky, Kushchevsky districts, Leningradsky region, Seversky and Tuapse districts), which provide palliative care for children aged from 3 months to 18 years. Along with inpatient services, outpatient forms of palliative care for children, such as long-term artificial respiration for incurable patients, were analysed. Statistical methods of analysis were not used due to the descriptive character of the research.Results. 28 palliative care beds for children were open in Krasnodar Krai over the period from 2013 to 2018. The number of visiting nurse brigades comprised 13. An analysis of the provision of palliative care in accordance with No. 985 form “Data on patients receiving palliative care” and the report of the palliative care structure as of September 1, 2018 showed that 193 children needed round-the-clock inpatient care. Out of these children, 71.5% and 21.2% suffered from CNS and cancer conditions, respectively, while 7.3% were referred to the ‘other diseases’ group. 250 patients were treated in the offices of palliative care, including 94.4% of neurological patients, 2.8% of cancer patients and 2.8% of children with other pathologies. At home, 14 incurable patients received long-term artificial respiration, 78.6% of whom were children with hereditary neuromuscular diseases, 7.1% with congenital malformations of the central nervous system, 7.1% with lysosomal storage disease and 7.2% with Pompe disease.Conclusion. Palliative care is one of the priority branches of medicine in the Russian Federation. The problem of providing palliative care for children is of particular significance due to the growing number of patients with life-threatening and terminal conditions.

Adapting and Going the Extra Mile: A Qualitative Study of Palliative Care in Rural Northern Norway From the Perspective of Healthcare Providers.

Despite significant developments in palliative care in recent decades, we still find important differences in access to and delivery of care in rural Norway. The aim of this study was to explore what healthcare professionals consider necessary to provide equality in care for palliative patients in rural areas. A qualitative approach with focus group discussions and individual interviews with 52 health professionals was used, starting with 5 uniprofessional focus groups of general practitioners and nurses/cancer nurses, followed by 5 interprofessional groups and 6 individual interviews. Interview transcripts were analyzed thematically. We found local variations in organization, competence and access to palliative care, and challenging geographical conditions. It was essential to be proactive, flexible and willing to go the extra mile, but this may conceal the need for a stronger focus on competence and organization of palliative care. Access to written guidelines and practical tools was important, as was forming palliative teams for particular situations. Palliative care needs strengthening in rural areas, and increased competence for all healthcare professionals is vital to increase equality in care. Geographical conditions require locally adapted solutions. Access to guidelines and interprofessional collaboration are essential. Rural palliative care needs in Norway are improving, as exemplified by at least 1 cancer nurse assigned to each local authority, and access to guidelines and palliative tools and interprofessional collaboration.

Home Hospice – Understanding the Issue, Poles’ Attitudes Towards it and the State of Discourse in Media. Research Results

Abstract The paper presents results of research related to familiarity and understanding of home hospice term and shows how the social media discourse of palliative care looks like. Answers and conclusions are crucial for palliative care organisations as their existence depends on donors financial support which engagement is strongly related to communication activities performed by those organisations. In the paper there has been presented opinions about public discussion about terminally ill children and its potential need for being treated as a taboo. The data whether futile medical care should be performed whatever the cost is also shown in the paper. Researchers asked also who should be responsible for executing management of hospices in Poland. The main conclusions focus on the necessity to intensify communication activities, especially by the professionals.

On issue of conditions of rendering palliative medical care

The legal base framework regulating provision of palliative care in the Russian Federation was updated. In particular, the Federal law was amended to expand definition of "palliative care" and determine conditions for its provision. The completely new regulation of organization of palliative care has also come into force, including the procedure of interaction between medical organizations, social service organizations and public associations and other non-profit organizations operating in the field of health care. The publication uses data from genuine research on hospitalization in palliative care unit the needs of patients of older age groups in palliative care and long-term care activities are discussed.

Experiences of work-related stress and coping among palliative care staff in South Africa: a qualitative study

Palliative care staff are exposed to a plethora of work-related stressors that negatively affect their psychological well-being and work engagement. Using qualitative interviews, this study sought to explore the experiences of work-related stress and coping among a multidisciplinary group of 12 palliative care staff employed by a non-governmental hospice in South Africa. Data were analysed using the principles of thematic analysis. Four domains of stressors were implicated in the experience of work-related stress: stressors accruing from the nature of work and were specific to palliative care; stressors relating to working in the community; those deriving from certain encounters with patients and families; and organisational stressors. Broader structural factors pertinent to the socio-political and economic context in South Africa and the perception of palliative care were interwoven with the experience of work-related stress. Receiving social support from co-workers, professionals, and family and friends; accepting limits; setting work–life boundaries; relying on personal resources and reconstructing the hospice in positive ways were coping strategies deployed by staff to manage stress. Arguably much of the experience of work-related stress and coping among palliative care staff in South Africa is similar to that reported in resource-rich contexts. However, the particularities of the broader socio-political and economic environment and its subsequent impact on palliative care organisations appear to augment and expand work-related stress for these practitioners. Deployment of intra-individual and interpersonal coping resources could be supplemented with efforts to address structural factors contributing to the subjective experience of stress.

Healing Moral Injury of Seriously Ill Vietnam Veterans: A Veterans Affairs (VA) and National Hospice Palliative Care Organization (NHPCO) Collaboration (FR456)

Healing Moral Injury of Seriously Ill Vietnam Veterans: A Veterans Affairs (VA) and National Hospice Palliative Care Organization (NHPCO) Collaboration (FR456)