scholarly journals Experiences, challenges and perspectives for ensuring end-of-life patient care: A national online survey with general practitioners in Germany

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254056
Author(s):  
Jannik M. Tielker ◽  
Jan P. Weber ◽  
Steffen T. Simon ◽  
Claudia Bausewein ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
General Practitioners ◽  
End Of Life Care ◽  
Online Survey ◽  
Personal Contact ◽  
Life Care ◽  
Dying Patients

Background The SARS-CoV-2 (COVID-19) pandemic is posing major challenges for health care systems. In Germany, one such challenge has been that adequate palliative care for the severely ill and dying (with and without COVID-19), as well as their loved ones, has not been available at all times and in all settings., the pandemic has underlined the significance of the contribution of general practitioners (GPs) to the care of severely ill and dying patients. Objectives To describe GPs’ experiences, challenges and perspectives with respect to end-of-life care during the first peak of the pandemic (spring 2020) in Germany. Materials and methods In November and December 2020, a link to an Unipark online survey was sent to GPs registered on nationwide distribution lists. Results In total, 410 GPs responded; 61.5% indicated that the quality of their patients’ end-of-life care was maintained throughout the pandemic, 36.8% reported a decrease in quality compared to pre-pandemic times. Of the GPs who made home visits to severely ill and dying patients, 61.4% reported a stable number of visits, 28.5% reported fewer visits. 62.7% of the GPs reported increased telephone contact and reduced personal contact with patients; 36.1% offered video consultations in lieu of face-to-face contact. The GPs reported that relatives were restricted (48.5%) or prohibited from visiting (33.4%) patients in nursing homes. They observed a fear of loneliness among patients in nursing homes (91.9%), private homes (87.3%) and hospitals (86.1%). Conclusions The present work provides insights into the pandemic management of GPs and supports the development of a national strategy for palliative care during a pandemic. To effectively address end-of-life care, GPs and palliative care specialists should be involved in COVID-19 task forces on micro, meso and macro levels of health care.

End-of-life care in nursing home settings: Do race or age matter?

2008 ◽  
Vol 6 (1) ◽  
pp. 21-27 ◽  
Author(s):  
Kimberly S. Reynolds ◽  
Laura C. Hanson ◽  
Martha Henderson ◽  
Karen E. Steinhauser
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

ABSTRACTObjective:One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institutional settings.Methods:We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care—advance care planning and pain management—and on residents' demographic and health status variables. Analyses tested for differences by race and age.Results:White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race.Significance of results:To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

27 Understanding public attitudes: a crucial component for developing palliative care services

2018 ◽  
Vol 8 (3) ◽  
pp. 370.1-370 ◽  
Author(s):  
Ishrat Islam ◽  
Anthony Byrne ◽  
Annmarie Nelson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Social Services ◽  
End Of Life Care ◽  
Online Survey ◽  
Public Attitudes ◽  
List Type ◽  
Life Care ◽  
Services Research ◽  
Survey Tool

IntroductionA major challenge in developing new models of palliative care is to identify the current needs of the public patients and carer (Dixon 2015). There is a lack of evidence on people’s attitudes towards end of life care (EoLC) in Wales.AimTo increase understanding of people’s feelings views knowledge and preferences around EoLC.MethodAn online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis.Results2210 people (Age: Mean +SD; 55+14 years) participated in the survey 43% of those were members of the general public 29% were patients/carers and 23% were health professionals. 49% of respondents thought that available palliative care was inadequate and 92% believed that end of life care for dying people should have equal priority for the NHS. 95% of respondents thought that expressing preferences around EoLC in advance was important but only 13% had done this in practice and 60% did not know how to plan their EoLC. However the top three needs in EoLC were identified as having a trained carer (84%) access to other professionals (59%) and emergency care (44%). The top three preferences for EoLC were being surrounded by loved ones (62%) maintaining dignity (55%) and a feeling of peace (40%). Just 24% respondents would chose to be at home while receiving EoLC.ConclusionsUnderstanding public attitudes is essential to understanding changing contexts of care. Developing a need-based palliative care model enhances an effective service delivery.Reference. Dixon J, et al. Equity in the provision of palliative care in the UK: Review of evidence2015;pg. 1–145. London: Personal Social Services Research Unit. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf

scholarly journals Establishment of Palliative and End-of-Life Care Services in Sri Lanka

2019 ◽  
Vol 34 (s1) ◽  
pp. s127-s128
Author(s):  
Clifford Perera ◽  
Udayangani Ramadasa ◽  
Chandrika Wijeratne ◽  
Panduka Karunanayake ◽  
Thashi Chang ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Sri Lanka ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Task Force ◽  
Steering Committee ◽  
Life Care ◽  
Care Services

Introduction:Sri Lanka has a rapidly aging population with an exponential rise in chronic morbidity. There had been no parallel development of palliative and end-of-life care-specific approach in health care.Aim:To implement sustainable palliative and end-of-life care services in Sri Lanka through the existing systems and resources by advocacy, collaboration, and professional commitment.Methods:Sri Lanka Medical Association established a volunteer task force for palliative and end-of-life care (PCTF) in October 2016, which comprised of multi-disciplinary health care professionals, legal fraternity, and civil society. PCTF identified the need for sensitizing the general public on the importance of palliative care, for standard guidelines and formal training for practicing health care professionals engaged in hospital and community-based palliative care. These needs are addressed through activities of PCTF in collaboration with the Ministry of Health.Results:Representing the National Steering Committee of Palliative Care, the members of the PCTF were instrumental in developing the National Strategic Framework to fill the major gap of affordable quality palliative care in the country. PCTF also published the “Palliative Care Manual for Management of Non-Cancer Patients” as a preliminary guide for health care professionals. The draft document on the End-of-Life Care Guidelines has been formulated and is currently being reviewed by the relevant medical and legal stakeholders. PCTF has organized CME lectures on palliative care all over the country for health care professionals, and also conducted lectures, exhibitions, and mass media programs to sensitize the public on palliative care.Discussion:Within a brief period, PCTF has played a key role to recognize palliative care by contributing to policy making, training, and public sensitization in palliative and end-of-life care in Sri Lanka.

scholarly journals Nursing home staff’s perspective on end-of-life care of German nursing home residents: a cross-sectional survey

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Anke Strautmann ◽  
Katharina Allers ◽  
Alexander Maximilian Fassmer ◽  
Falk Hoffmann
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Nursing Staff ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Hospital Death ◽  
Life Care ◽  
Cross Sectional

Abstract Background Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany. Methods A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested. Results 486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement. Conclusions Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.

scholarly journals Do Palliative Care Teams in Nursing Homes Improve the Quality of End-of-Life Care for Nursing Home Residents?

2019 ◽  
Author(s):  
Helena Temkin-Greener Helena Temkin-Greener ◽  
Dana Mukamel ◽  
Susan Ladwig ◽  
Thomas , Caprio ◽  
Sally Norton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Life Care ◽  
Palliative Care Teams

scholarly journals Education is an important factor in end-of-life care: results from a survey of Brazilian physicians’ attitudes and knowledge in end-of-life medicine

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Thais Ioshimoto ◽  
Danielle Ioshimoto Shitara ◽  
Gilmar Fernades do Prado ◽  
Raymon Pizzoni ◽  
Rafael Hennemann Sassi ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Medical Schools ◽  
Medical Residency ◽  
Life Care ◽  
Prior Training ◽  
Care Education ◽  
Palliative Care Education ◽  
Dying Patients

Abstract Background According to the Latin America Association for palliative care, Brazil offers only 0.48 palliative care services per 1 million inhabitants. In 2012, no accredited physicians were working in palliative care, while only 1.1% of medical schools included palliative care education in their undergraduate curricula. As a reflection of the current scenario, little research about end-of-life care has been published so that studies addressing this subject in the Brazilian setting are crucial. Methods A cross-sectional study study conducted with students applying for the medical residency of the Federal University of São Paulo were invited to voluntarily participate in an anonymous and self-administered questionnaire survey. The latter included demographic information, attitudes, prior training in end-of-life care, prior end-of-life care experience, the 20-item Palliative Care Knowledge Test (PCKT) and a consent term. Results Of the 3086 subjects applying for residency, 2349 (76%) answered the survey, 2225 were eligible for analysis while 124 were excluded due to incomplete data. Although the majority (99,2%) thought it was important to have palliative care education in the medical curriculum, less than half of them (46,2%) reported having received no education on palliative care. The overall performance in the PCKT was poor, with a mean score of 10,79 (± 3). While philosophical questions were correctly answered (81,8% of correct answers), most participants lacked knowledge in symptom control (50,7% for pain, 57,3% for dyspnea, 52,2% for psychiatric problems and 43,4% for gastrointestinal problems). Doctors that had already concluded a prior residency program and the ones that had prior experience with terminal patients performed better in the PCKT (p < 0,001). The high-performance group (more than 50% of correct answers) had received more training in end-of-life care, showed more interest in learning more about the subject, had a better sense of preparedness, as well as a higher percentage of experience in caring for terminal patients (p < 0,001). Conclusions Our study showed that Brazilian physicians lack not only the knowledge, but also training in end-of-life medicine. Important factors to better knowledge in end-of-life care were prior training, previous contact with dying patients and prior medical residency. Corroborating the literature, for this group, training showed to be a key factor in overall in this area of knowledge. Therefore, Brazilian medical schools and residency programs should focus on improving palliative training, especially those involving contact with dying patients.

General practitioners (GPs) and end-of-life care: a qualitative study of Australian GPs and specialist palliative care clinicians

2018 ◽  
pp. bmjspcare-2018-001531 ◽  
Author(s):  
Joel J Rhee ◽  
Patrick C K Teo ◽  
Geoffrey K Mitchell ◽  
Hugh E Senior ◽  
Aaron J H Tan ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
General Practitioners ◽  
Continuity Of Care ◽  
End Of Life Care ◽  
Significant Proportion ◽  
Qualitative Description ◽  
Life Care ◽  
Specialist Palliative Care

ObjectivesGeneral practitioners (GPs) are well placed to be involved in end-of-life care for patients with life-limiting illnesses. However, differing views exist regarding their role. This study aims to explore the views of GPs and specialist palliative care clinicians (SPCCs) on the role that GPs should play in the planning and provision of end-of-life care and important barriers and facilitators to GPs’ involvement in end-of-life care including suggestions for improvement.MethodsQualitative description methodology using semistructured interviews of 11 GPs and 10 SPCCs.ResultsThe participants identified two key roles that GPs should play in the planning and provision of end-of-life care: care planning and referring to palliative care services and being the primary clinician in charge of patient care. GPs and SPCCs expressed similar views; however, a significant proportion of the GP participants were not actively involved in end-of-life care. Factors affecting GPs’ involvement in end-of-life care included: (1) GP and practice factors including continuity of care, long-term relationships with patients, knowledge and skills in end-of-life care, resource limitations and work patterns; (2) communication and collaboration between GPs and the acute healthcare system and (3) communication and collaboration between GPs and SPCCs.ConclusionGPs have a key role in the planning and provision of end-of-life care. GPs could be encouraged in this role by providing them with education and practical experience in end-of-life care, making changes to remuneration structure, formalised arrangements for shared care and encouraging continuity of care and developing long-term relationship with their patients.

scholarly journals UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey

2016 ◽  
Vol 8 (4) ◽  
pp. 424-427 ◽  
Author(s):  
Sarah Amador ◽  
Claire Goodman ◽  
Louise Robinson ◽  
Elizabeth L Sampson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Online Survey ◽  
Symptom Control ◽  
Good Practice ◽  
Dementia Care ◽  
National Council ◽  
Life Care ◽  
Wide Range

BackgroundPeople living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care.MethodsAn online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics.Results15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision.ConclusionsRecent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, ‘Hospice-enabled Dementia Care’.

scholarly journals How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences

BMJ Open ◽  
2017 ◽  
Vol 7 (8) ◽  
pp. e017106 ◽  
Author(s):  
Holly Standing ◽  
Helen Jarvis ◽  
James Orr ◽  
Catherine Exley ◽  
Mark Hudson ◽  
...  
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Liver Disease ◽  
End Of Life ◽  
General Practitioners ◽  
End Of Life Care ◽  
Symptom Relief ◽  
Social Consequences ◽  
Life Care ◽  
Qualitative Interview Study

BackgroundLiver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners’ (GPs) perceptions of their role in managing end-stage liver disease.ObjectiveTo explore GPs’ experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease.DesignQualitative interview study, thematic analysis.ParticipantsPurposive sample of 25 GPs from five regions of England.ResultsGPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients’ social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area.ConclusionsEnd-of-life care for patients with liver disease merits attention from both primary and secondary care services. Development of care pathways and equitable access to symptom relief should be a priority.

Sign in / Sign up

Export Citation Format

Share Document