Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
BACKGROUND: Palliative care (PC) is the holistic care of patients with life-limiting illnesses focused on relief of suffering and maximizing quality of life for patients and their families. Patients with heart failure (HF) are the largest group eligible for PC services, but only a small percentage of them receive PC.
AREAS OF UNCERTAINTY: The optimal content and method of delivery of PC interventions to HF patients in resource-limited countries remain unknown. The integration of PC into existing HF disease management continues to be a challenge.
DATA SOURCES: PUBMED was searched to identify articles on the topic published in the last 5 years (2014-April 2019). One hundred thirty-six articles were identified-14 articles out of were included in the revision.
THERAPEUTIC ADVANCES: Research concerning PC in HF is still scarce and comes predominantly from developed countries. PC in HF improves patients' and caregivers' outcomes in terms of dyspnea, sleep, depression, communication, coping, and care-giving burden. Specialized home-based PC services have a positive impact on patients' physical and emotional wellbeing while decreasing utilization of medical services. Fatigue, dyspnea, and pain are frequent symptoms. Evidence concerning use of opioids for dyspnea is increasing. Family caregivers offer a considerable amount of care during the disease trajectory. There is often incongruence between the carer's and the patient's wishes in terms of treatment decisions and preferences. Carers should be assessed for risk and supported in their roles in care management and care coordination.
CONCLUSIONS: Because of the unpredictability of the disease and difficulty in prognostication, PC should be introduced at the point of diagnosis of HF. Basic education in PC needs to be introduced early in the training of cardiology staff, focused on concept definition, differencing PC and terminal care, symptom management, communication, and decision-making.
Worldwide, health care is becoming more complex and multifaceted. Nurses, who spend more time at the bedside or out in the community with patients and their families than any other health care professional, need leadership-building skills in order to navigate these challenging times. New guidelines focus on interprofessional and holistic care, emphasizing the importance of building leadership skills and abilities. The World Health Organization and the European Association for Palliative Care have shown interest in influencing the development and implementation of palliative care services globally, given the increasingly aging population, the growing incidence of cancer, and the human immunodeficiency virus/AIDS epidemic. Despite challenges in developing leadership skills in nurses throughout Central and Eastern Europe (CEE), visionary nursing leaders throughout these countries have taken the opportunity to develop the Transformational Palliative Nursing Leadership Program, which has been designed to improve the leadership abilities of palliative care nurses throughout CEE countries. The purpose of the Transformational Palliative Nursing Leadership Program education is to equip palliative care nurses with the ability to promote, develop, and sustain this specialized care in CEE countries or any other part of the world.
BACKGROUND: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
DESIGN: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
RESULTS: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented.
DISCUSSION: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world.
Purpose: The purpose of this new resource-stratified guideline is to provide expert guidance to clinicians and policymakers on implementing palliative care of patients with cancer and their caregivers in resource-constrained settings and is intended to complement the Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update of 2016.
Methods: ASCO convened a multidisciplinary, multinational panel of experts in medical oncology, family medicine, radiation oncology, hematology/oncology, palliative and/or hospice care, pain and/or symptom management, patient advocacy, public health, and health economics. Guideline development involved a systematic literature review, a modified ADAPTE process, and a formal consensus-based process with the Expert Panel and additional experts (consensus ratings group).
Results: The systematic review included 48 full-text publications regarding palliative care in resource-constrained settings, along with cost-effectiveness analyses; the evidence for many clinical questions was limited. These provided indirect evidence to inform the formal consensus process, which resulted in agreement of = 75% (by consensus ratings group including Expert Panel).
Recommendations : The recommendations help define the models of care, staffing requirements, and roles and training needs of team members in a variety of resource settings for palliative care. Recommendations also outline the standards for provision of psychosocial support, spiritual care, and opioid analgesics, which can be particularly challenging and often overlooked in resource-constrained settings. Additional information is available at www.asco.org/resource-stratified-guidelines.
It is the view of ASCO that health care providers and health care system decision makers should be guided by the recommendations for the highest stratum of resources available. The guideline is intended to complement but not replace local guidelines.
Palliative care nurses in Romania have a long history of collaborating with the End-of-Life Nursing Education Consortium (ELNEC) project, a national education initiative administered by the American Association of Colleges of Nursing (AACN) in Washington, DC, and the City of Hope National Medical Center in Duarte, California. Between January 2013 and October 2014, 1360 Romanian nurses participated in ELNEC palliative care training courses; 306 of these nurses attended both the introductory and advanced ELNEC courses. The aims of this study were to identify the changes implemented by the participant nurses in their clinical practice, after attending ELNEC palliative care introductory and advanced courses, and to compare the participant nurses' palliative care knowledge precourse versus postcourse. The data were collected from 6 focus groups at 3 to 6 months postcourse, in 6 different locations in Romania. Five themes were identified, with related subthemes including new perspectives of care, the importance of communication skills, the role of interprofessional teams in the healthcare system, addressing the needs of the patient and family, and informed decision-making by the patient and family. This study showed that the ELNEC introductory and advanced courses lead to changes in the participant nurses' clinical practice and aided nurses in identifying barriers in the Romanian public healthcare system that need to be addressed to improve palliative care.
Hospice Casa Sperantei has been pioneering palliative care development in Romania since 1992. The have developed specialist palliative care services in home-based settings, inpatient units, day care centers and as hospital support teams. They have provided national and international education programs for professionals in the palliative care field, as well as promoting palliative care integration in the healthcare system. Legislative improvements were adopted including funding mechanisms for the reimbursement of palliative care services through the health insurance funds, review of opioid policy, and quality standards of care. By the end of 2015, Romania had 115 specialist palliative care services (78 palliative care inpatient units, 24 home-based palliative care services, 5 outpatient palliative care clinics, 4 day care centers and 4 hospital support teams). A palliative care subspecialty for doctors was recognized as early as 2000, and a multidisciplinary Master's Degree program has been available at Transilvania University since 2010, when the first palliative care academic position was established. Nursing education includes mandatory palliative care modules in nursing schools. For coordinated development of palliative care at the national level a national strategy was proposed defining three levels of palliative care provision, local, district and national. The implementation of the palliative care strategy is partially funded through a World Bank loan.
Cette conférence démontre la faisabilité de réunir les soignants travaillant en soins palliatifs et les chefs religieux responsables de l'éducation théologique, de la pratique religieuse et des soins pastoraux du mourir pour travailler au développement d'une compréhension mutuelle ainsi que d'explorer les voies possibles pour collaborer dans les soins donnés.
Cet article présente dans un premier temps la Moldavie, son système de santé, ses besoins et les groupes de travail créés afin d'introduire les soins palliatifs sur une stratégie nationale de santé sur le long terme. L'auteure expose dans une deuxième partie les réalisations de ces groupes à propos de la régulation des services de soins palliatifs, de l'accès aux opioïdes, de la formation des professionnels et des défis à relever pour les années à venir.
Cet article décrit l'histoire et le développement d'une unité de soins palliatifs à Brasov en Roumanie. En 20 ans, cette unité a si bien évolué qu'elle a signé un partenariat avec le ministère de la santé roumain pour développer une stratégie nationale concernant les soins palliatifs.
Après une présentation du système de santé en Roumanie, l'article décrit le programme national sur le cancer. Il donne un historique sur les soins palliatifs avec des facteurs épidémiologiques actuels. Il présente le rôle de l'Association nationale pour les soins palliatifs, les programmes de formation des professionnels de santé, l'accès aux thérapeutiques opioïdes et les besoins futurs. Il est illustré par un graphique sur la prévalence des différents types de cancers et un schéma sur la localisation des villes où résident différents professionnels de santé concernés par la pratique palliative.