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      Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study

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          Abstract

          Background

          According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries.

          Methods

          In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards.

          Results

          In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers.

          Conclusions

          Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe.

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          Most cited references8

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          Formulary availability and regulatory barriers to accessibility of opioids for cancer pain in Europe: a report from the ESMO/EAPC Opioid Policy Initiative.

          Many patients in Europe do not receive adequate relief of pain because of excessive regulatory restrictions on the availability and accessibility of opioids. This is a major public health problem. The aim of the study is to evaluate and report on opioid availability and the legal and regulatory barriers to accessibility across the countries of Europe. European Society for Medical Oncology and European Association for Palliative Care national representatives reported data regarding survey of opioid availability and accessibility. Formulary adequacy is evaluated relative to the World Health Organization (WHO) essential drugs list and the International Association for Hospice and Palliative Care list of essential medicines for palliative care. Overregulation is evaluated according to the guidelines for assessment of national opioid regulations of the WHO. Data were reported on the availability and accessibility of opioids for the management of cancer pain in 21 Eastern European countries and 20 Western European countries. Results are presented describing the availability and cost of opioids for cancer pain in each surveyed country and nine forms of regulatory restrictions. Using standards derived from the WHO and International Narcotics Control Board, this survey has exposed formulary deficiencies and excessive regulatory barriers that interfere with appropriate patient care in many European countries. There is an ethical and public health imperative to address these issues.
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            A new set of quality indicators for palliative care: process and results of the development trajectory.

            In some countries (the United States in particular), quality indicators for palliative care have already been developed. However, these quality indicators often cover one specific setting or target group, for example, palliative cancer care or palliative home care. This article describes the development and initial testing of a set of quality indicators for palliative care, applicable for all settings in which palliative care is being provided for adult patients in The Netherlands. In the first phase of the project, an inventory was made of existing relevant quality indicators. Most quality indicators focused on the process or outcome of palliative care, and quality indicators for the structure of palliative care were rare. Most of the existing quality indicators fall within the domain of physical care, and very few concern the social and spirituals domains of palliative care. In the second phase, a new draft set of quality indicators was developed. In addition to the previous inventory of existing indicators, interviews with patients, relatives, and caregivers provided input for the development of the draft set. Drafts of the set were tested among experts. In the third phase, the feasibility and usability of a draft set was established in 14 Dutch care organizations providing palliative care. As a result of these phases, a set of quality indicators for palliative care has been developed, consisting of 33 indicators for palliative patient care and 10 indicators for support for relatives before and/or after the patient's death. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
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              Health system characteristics of quality care delivery: a comparative case study examination of palliative care for cancer patients in four regions in Ontario, Canada.

              A number of palliative care delivery models have been proposed to address the structural and process gaps in this care. However, the specific elements required to form competent systems are often vaguely described. The purpose of this study was to explore whether a set of modifiable health system factors could be identified that are associated with population palliative care outcomes, including less acute care use and more home deaths. A comparative case study evaluation was conducted of 'palliative care' in four health regions in Ontario, Canada. Regions were selected as exemplars of high and low acute care utilization patterns, representing both urban and rural settings. A theory-based approach to data collection was taken using the System Competency Model, comprised of structural features known to be essential indicators of palliative care system performance. Key informants in each region completed study instruments. Data were summarized using qualitative techniques and an exploratory factor pattern analysis was completed. 43 participants (10+ from each region) were recruited, representing clinical and administrative perspectives. Pattern analysis revealed six factors that discriminated between regions: overall palliative care planning and needs assessment; a common chart; standardized patient assessments; 24/7 palliative care team access; advanced practice nursing presence; and designated roles for the provision of palliative care services. The four palliative care regional 'systems' examined using our model were found to be in different stages of development. This research further informs health system planners on important features to incorporate into evolving palliative care systems.
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                Author and article information

                Contributors
                Journal
                BMC Health Serv Res
                BMC Health Serv Res
                BMC Health Services Research
                BioMed Central
                1472-6963
                2013
                17 July 2013
                : 13
                : 275
                Affiliations
                [1 ]Department of Radiation-Oncology and Palliative Medicine, University Hospital Gasthuisberg, Leuven, Belgium
                [2 ]Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
                [3 ]Academic Unit of Supportive Care, School of Medicine and Biomedical Sciences, University of Sheffield, Sheffield, UK
                [4 ]Department of Palliative Medicine, University of Bonn, Palliative Care Centre, Malteser Hospital Bonn/Rhein-Sieg, Bonn, Germany
                [5 ]Department of Palliative Medicine, University of Goettingen, University Medical Clinic, Goettingen, Germany
                Article
                1472-6963-13-275
                10.1186/1472-6963-13-275
                3720186
                23866928
                e8a630e7-de58-445c-a8be-678d8ccda3b9
                Copyright ©2013 Beek et al.; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 3 October 2012
                : 10 July 2013
                Categories
                Research Article

                Health & Social care
                palliative care,government regulation,european union,health policy,legislation,health plan implementation

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