scholarly journals Development of the Dutch Structure for Integrated Children’s Palliative Care

Children ◽  
2021 ◽  
Vol 8 (9) ◽  
pp. 741
Author(s):  
Stephanie Vallianatos ◽  
Carolien S. M. Huizinga ◽  
Meggi A. Schuiling-Otten ◽  
Antoinette Y. N. Schouten-van Meeteren ◽  
Leontien C. M. Kremer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Healthcare Providers ◽  
Care Plan ◽  
Health Care Insurance ◽  
University Hospitals ◽  
Dutch Association ◽  
Dutch Health ◽  
Set Up ◽  
Access To Knowledge ◽  
Evidence Based Guideline

Children’s palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for Children’s Palliative Expertise (PAL) was established as a nationwide initiative committed to improving palliative care for children countrywide. This led to the development of the first hospital-based CPC team in 2012, which expanded to a total of seven teams adjacent to children’s university hospitals. Regional networks for CPC were developed in parallel to these teams from 2014 onwards. The networks are a collaboration of professionals from different disciplines and organisations, from hospital to homecare, and have covered the aspects of CPC nationally from 2019 onwards. They are connected through the Dutch Knowledge Centre for CPC. This centre was established in 2018 by the PAL Foundation in collaboration with the Dutch Association for Pediatrics. In 2013, the first evidence-based guideline, ‘palliative care for children’, provided access to knowledge for parents and healthcare providers, and in 2017, a format for an individual palliative care plan was established. Within the Knowledge Centre for CPC, a physician’s support centre for dilemma’s regarding the end of life of children was set up. The efforts to have children’s palliative care embedded in the regular Dutch health care insurance are ongoing.

Assessment of palliative care training in gynaecological oncology: a survey among European Network of Young Gynae-Oncologists (ENYGO) members

2020 ◽  
pp. bmjspcare-2020-002233
Author(s):  
Mariaclelia La Russa ◽  
Ignacio Zapardiel ◽  
Kamil Zalewski ◽  
Rene Laky ◽  
Polat Dursun ◽  
...  
Keyword(s):  
Palliative Care ◽  
Healthcare Providers ◽  
European Network ◽  
University Hospitals ◽  
Gynaecological Oncology ◽  
Systematic Training ◽  
Oncology Practice ◽  
Training Programmes ◽  
Eol Care

IntroductionPalliative care is an important aspect of gynaecological oncology practice. In order to successfully integrate end-of-life (EOL) care in the disease trajectory, it is crucial to incorporate systematic training in subspecialty programmes in gynaecological oncology. We aimed to evaluate the quality of training in palliative care across gynaecological oncology fellows in Europe and to provide a framework to facilitate learning opportunities.MethodsA web-based questionnaire was sent to members of the European Network of Young Gynae-Oncologists (ENYGO). The survey consisted of 36 items covering six domains: respondents’ characteristics, quality and quantity of teaching, curriculum achievements, observation and feedback, EOL clinical practice and attitudes about palliative care.ResultsOf the 703 clinicians enrolled in the study, 142 responded (20.2%). Although the majority worked in university hospitals, only half of them (47%) were in a formal subspecialty programme. The majority of respondents (60%) were trained without a mandatory rotation in palliative care units and considered the quality of EOL care teaching as ‘very poor’ or ‘poor’ (57.7%). The majority of respondents (71.6%) did not receive any supervision or feedback at the time of their first consultation on changing the goals of care.ConclusionOur study underlines lack of structured teaching and supervision in palliative care contents among European fellows in gynaecological oncology. Broad education of healthcare providers is a key factor to achieve the integration of palliative care in gynaecological oncology practice. Stakeholders like European Society of Gynaecological Oncology/ENYGO play an important role to facilitate educational activities and training programmes targeting to EOL care.

Developing palliative care capacity in Colombia and Mexico.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 103-103
Author(s):  
Felicia Marie Knaul ◽  
Virginia Townsend LeBaron ◽  
Mariana Calderon ◽  
Hector Arreola-Ornelas ◽  
Afsan Bhadelia ◽  
...  
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Care Delivery ◽  
Healthcare Providers ◽  
World Health ◽  
Care Plan ◽  
Care Needs ◽  
Middle Income ◽  
The Government ◽  
Strong Opioids

103 Background: Access to pain relief and palliative care often is limited or absent in low-and-middle-income countries (LMICs). Consequently, millions of patients with cancer and other serious illnesses in LMICs suffer needlessly. Multiple stakeholders have joined efforts to enhance the delivery of palliative care, develop national plans, and advocate for improved policies and regulations in Colombia and Mexico with applications to other LMICs. Methods: In Mexico and Colombia, efforts to improve access to palliative care focus on regulatory frameworks, finance, delivery, research and capacity-building, as per World Health Organization recommendations. In Colombia, health and educational institutions have partnered with non-governmental organizations to advise the Ministry of Health (MOH) and Senate. In Mexico, a range of governmental, legislative and private institutions are developing a National Palliative Care Plan. Results: Colombia: Laws passed in 2010 and 2013 require palliative care be available for all cancer patients. The allowable length of opioid prescriptions has been extended from 10 to 30 days, strong opioids must be freely available, and the MOH requires at least 1 pharmacy per State be able to dispense opioids 24/7. Mexico: Amendments to the health law introduced palliative care and pain management as a right for people with terminal illness. The government plans a new digital system to make opioid prescribing more efficient and secure, and the pharmaceutical industry is developing systems for monitoring production and supply. Yet, in both countries, palliative care training is mandatory in less than 5% of medical schools and innovative materials are being developed to train practicing primary care personnel. Conclusions: To meet palliative care needs in LMICs, novel approaches are required to develop and implement national plans, train healthcare providers, educate government officials, and advocate for policies that improve equitable access. Exemplary work in Colombia and Mexico illustrate effective strategies to improve palliative care delivery in LMICs.

End-of-life spiritual care at a VA medical center: Chaplains' perspectives

2012 ◽  
Vol 10 (4) ◽  
pp. 273-278 ◽  
Author(s):  
Bei-Hung Chang ◽  
Nathan R. Stein ◽  
Kelly Trevino ◽  
Max Stewart ◽  
Ann Hendricks ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Spiritual Care ◽  
Medical Center ◽  
Healthcare Providers ◽  
Well Being ◽  
Care Patient ◽  
Care Plan ◽  
Spiritual Needs ◽  
Care Improvement

AbstractObjective:Spiritual care is an essential component of quality palliative care. Recognizing the importance, the Department of Veterans Affairs (VA) mandates the inclusion of chaplains in a palliative care consult team (PCCT). The purpose of this study is to explain the process and content of spiritual care provided in a VA Medical Center from chaplains' perspectives.Method:Five Christian chaplains who provide care to patients at end of life were interviewed. Each interview was recorded and transcribed. Analysis based on the grounded theory was used to identify themes from each interview question.Results:The PCCT in this study appeared to have a strong referral and communication system in which every palliative care patient was seen by a chaplain and the care plan was discussed with an interdisciplinary team. Chaplains reported providing a range of services, which addressed religious, spiritual, emotional, family, and illness concerns. Chaplains were aware of the unique spiritual needs of veterans, including working through guilt for killing in war and requiring forgiveness. Chaplains' ideas for improvement of spiritual care services included increasing time to provide care, providing bereavement care and support to families, and adding chaplains with different religious backgrounds. Chaplains reported how their own spirituality influenced the care they provided.Significance of results:Spiritual care in the VA can include a range of services and should consider the unique needs of the veteran population. Future studies can build upon our findings from chaplains to learn about the perspectives of patients, family, and other healthcare providers of spiritual care. This information would allow identification of strengths of current spiritual care practices and areas for care improvement, and ultimately could improve the well-being of patients at the end of life.

COVID-19 in patients suffering from Cancer: Review article

2020 ◽  
Vol 11 (SPL1) ◽  
pp. 1494-1499
Author(s):  
Shahid Ahmad Siddiqui
Keyword(s):  
Cancer Patients ◽  
Immune Status ◽  
Review Article ◽  
Care Plan ◽  
Patients With Cancer ◽  
Corona Virus ◽  
Cancer Review ◽  
Ideal System ◽  
Lethal Infection ◽  
Set Up

The episode of Covid19 (CORONA VIRUS) has become one of the greatest worldwide dangers around the world, which has now tainted over 1.7 million individuals with deaths of over 100,000 lives far & wide. Under these extraordinary conditions, there are no entrenched rules for cancer patients. The danger for genuine infection & passing in CORONA VIRUS cases increments with propelling age & existing co-morbid medical issue. After the rise of primary suspects in China during last month of 2019, enormous exploration endeavors have been in progress to comprehend the instruments of infectivity & contagiousness of coronavirus, a lethal infection liable for wretched endurance results. To limit the death rate, it gets judicious to distinguish indications quickly & utilize medicines suitably. Despite the fact that no fix has been set up, different clinical preliminaries are in progress to decide the most ideal system. Overseeing patients with cancer in these conditions is a fair task, considering their weak immune status & their ill health. Through this thorough audit, we talk about the effect of CORONA VIRUS on wellbeing & the immune system of who are infected, assessing the most recent care plan draws near & progressing clinical preliminaries. Also, we talk about difficulties confronted while treating cancer patients & propose possible ways to deal with these weak populace during pandemic.

scholarly journals Is There a Role for Early Palliative Intervention in Frail Older Patients With a Neck of Femur Fracture?

2018 ◽  
Vol 9 ◽  
pp. 215145931878223 ◽  
Author(s):  
Andrew Davies ◽  
Thomas Tilston ◽  
Katherine Walsh ◽  
Michael Kelly
Keyword(s):  
Palliative Care ◽  
Femur Fracture ◽  
Trauma Centre ◽  
Care Plan ◽  
X Rays ◽  
Neck Of Femur ◽  
Early Palliative Care ◽  
Multidisciplinary Meeting ◽  
Major Trauma Centre ◽  
Neck Of Femur Fracture

Background: Patients with a neck of femur fracture have a high mortality rate. National outcomes have improved significantly as the management of this patient group is prioritized. In 2016, however, 4398 (6.7%) patients died within 30 days of admission. Objective: To investigate whether palliative care could be integrated early in the care plan for high-risk patients. Methods: All cases of inpatient mortality following neck of femur fracture at North Bristol Major Trauma Centre over a 24-month period were reviewed. A comprehensive assessment of care was performed from the emergency department until death. All investigations, interventions, and management decisions were recorded. A consensus decision regarding expected mortality was made for each case at a multidisciplinary meeting which included surgical, orthogeriatric, nursing, and anesthetic team input. Results: A total of 1033 patients were admitted following a neck of femur fracture. There were 74 inpatient deaths, and 82% were considered predictable at our multidisciplinary meeting. The mean length of stay was 18 days (range: 0-85, median 14). In 42% of cases, mortality was considered predictable on admission, and 40% were considered predictable following acute deterioration. These patients received on average 28 blood tests (range: 4-114) and 6.8 X-rays and computed tomographies (range: 2-20). Of this, 66% received end-of-life care; mean duration 2.3 days (range: 0-17). Conclusions: Mortality rates remain high in a subset of patients. This study demonstrates that intensive investigation and medical management frequently continues until death, including in patients with predictably poor outcomes. Early palliative care input has been integrated successfully into patient management in other specialties. We demonstrate that it is feasible to identify patients with hip fracture who may benefit from this expertise.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

Cannabis and End-of-Life Care: A Snapshot of Hospice Planning and Experiences Among Illinois Medical Cannabis Patients With A Terminal Diagnosis

2021 ◽  
pp. 104990912110186
Author(s):  
James Alton Croker ◽  
Julie Bobitt ◽  
Sara Sanders ◽  
Kanika Arora ◽  
Keith Mueller ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Fast Track ◽  
Hospice Care ◽  
Cannabis Use ◽  
Care Plan ◽  
Medical Cannabis ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Eol Care

Introduction: Between 2013 and 2019, Illinois limited cannabis access to certified patients enrolled in the Illinois Medical Cannabis Program (IMCP). In 2016, the state instituted a fast-track pathway for terminal patients. The benefits of medicinal cannabis (MC) have clear implications for patients near end-of-life (EOL). However, little is known about how terminal patients engage medical cannabis relative to supportive care. Methods: Anonymous cross-sectional survey data were collected from 342 terminal patients who were already enrolled in ( n = 19) or planning to enroll ( n = 323) in hospice for EOL care. Logistic regression models compare patients in the sample on hospice planning vs. hospice enrollment, use of palliative care vs. hospice care, and use standard care vs non-hospice palliative care. Results: In our sample, cancer patients ( OR = 0.21 (0.11), p < .01), and those who used the fast-track application into the IMCP ( OR = 0.11 (0.06), p < .001) were less likely to be enrolled in hospice. Compared to patients in palliative care, hospice patients were less likely to report cancer as their qualifying condition ( OR = 0.16 (0.11), p < .01), or entered the IMCP via the fast-track ( OR = 0.23 (0.15), p < .05). Discussion: Given low hospice enrollment in a fairly large EOL sample, cannabis use may operate as an alternative to supportive forms of care like hospice and palliation. Clinicians should initiate conversations about cannabis use with their patients while also engaging EOL Care planning discussions as an essential part of the general care plan.

scholarly journals 77 National Audit of Care At the End of Life (NACEL)—Round Two Findings

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Experience Of Care ◽  
Outcomes Of Care ◽  
Specialist Palliative Care Service ◽  
The Right

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.

scholarly journals Inadequate completion of advance care directives by individuals with dementia: national audit of health and aged care facilities

2021 ◽  
pp. bmjspcare-2020-002767
Author(s):  
Jamie Bryant ◽  
Marcus Sellars ◽  
Craig Sinclair ◽  
Karen Detering ◽  
Kimberly Buck ◽  
...  
Keyword(s):  
Healthcare Providers ◽  
Aged Care ◽  
Care Plan ◽  
Residential Aged Care ◽  
Multinomial Regression ◽  
People With Dementia ◽  
Care Facilities ◽  
Aged Care Facilities ◽  
Advance Care Directives ◽  
Advance Care

Objectives(i) Describe the prevalence and type of advance care directives (ACDs) and other advance care planning (ACP) documentation completed by persons with dementia, healthcare providers and others on behalf of a person with dementia; (ii) identify the personal and ACP programme characteristics associated with having ACP documentation in the health record; (iii) identify the personal and ACP programme characteristics associated with having a self-completed ACD.MethodsA multicentre audit was undertaken in Australian hospitals, general practices and residential aged care facilities. Auditors extracted demographic and ACP data from the records of eligible patients. ACP programme characteristics were provided by a site representative. Logistic and multinomial regression were used respectively to examine the factors associated with completion of any ACP documentation, and self-completion of an ACD by persons with dementia.ResultsA total of 1388 people with dementia (33.2%) from 96 sites were included. Overall, 60.8% (n=844) had ACP documentation; 31.6% (n=438) had a self-completed ACD and 29.3% (n=406) had an ACP document completed by a health professional or someone else on their behalf. Older participants were more likely to have ACP documented. Multivariate analyses indicated the odds of having self-completed ACP documents, compared with no advance care plan or ACP completed by someone else, were significantly influenced by age, country of birth, setting and whether the site had ACP training, policies or guidelines.DiscussionWhile 60% of people with dementia had some form of ACP documentation, only half of the cases in which ACP was documented included an ACD completed by the person themselves.

Piloting the EHR4CR Feasibility Platform across Europe

2014 ◽  
Vol 53 (04) ◽  
pp. 264-268 ◽  
Author(s):  
R. Bache ◽  
M. McGilchrist ◽  
C. Daniel ◽  
M. Dugas ◽  
F. Fritz ◽  
...  
Keyword(s):  
Electronic Health Records ◽  
Clinical Research ◽  
Test Data ◽  
Data Access ◽  
Data Warehouses ◽  
University Hospitals ◽  
Local Networks ◽  
Health Records ◽  
Electronic Health ◽  
Set Up

SummaryBackground: Pharmaceutical clinical trials are primarily conducted across many countries, yet recruitment numbers are frequently not met in time. Electronic health records store large amounts of potentially useful data that could aid in this process. The EHR4CR project aims at re-using EHR data for clinical research purposes.Objective: To evaluate whether the protocol feasibility platform produced by the Electronic Health Records for Clinical Research (EHR4CR) project can be installed and set up in accordance with local technical and governance requirements to execute protocol feasibility queries uniformly across national borders.Methods: We installed specifically engineered software and warehouses at local sites. Approvals for data access and usage of the platform were acquired and terminology mapping of local site codes to central platform codes were performed. A test data set, or real EHR data where approvals were in place, were loaded into data warehouses. Test feasibility queries were created on a central component of the platform and sent to the local components at eleven university hospitals.Results: To use real, de-identified EHR data we obtained permissions and approvals from ‘data controllers‘ and ethics committees. Through the platform we were able to create feasibility queries, distribute them to eleven university hospitals and retrieve aggregated patient counts of both test data and de-identified EHR data.Conclusion: It is possible to install a uniform piece of software in different university hospitals in five European countries and configure it to the requirements of the local networks, while complying with local data protection regulations. We were also able set up ETL processes and data warehouses, to reuse EHR data for feasibility queries distributed over the EHR4CR platform.

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