IMPaCCT: Standards pädiatrischer Palliativversorgung in Europa

The needs of children and families living with life-limiting and life-threatening illness are similar across all European countries. Meeting these needs requires a comprehensive and integrative approach, with the input of a skilled multidisciplinary paediatric team. It is essential that the core standards for paediatric palliative care recommended in this document of the European Association for Palliative Care (EAPC) now be implemented across Europe.     

Sedierung in der Palliativmedizin*: Leitlinie für den Einsatz sedierender Maßnahmen in der Palliativversorgung

The European Association for Palliative Care (EAPC) considers sedation to be an important and necessary therapy option in the care of selected palliative care patients with otherwise refractory distress. Prudent application of this approach requires due caution and good clinical practice. Inattention to potential risks and problematic practices can lead to harmful and unethical practice which may undermine the credibility and reputation of the responsible clinicians and institutions as well as the discipline of palliative medicine more generally. Procedural guidelines are helpful to educate medical providers, set standards for best practice, promote optimal care and convey the important message to staff, patients and families that palliative sedation is an accepted, ethical practice when used in appropriate situations. EAPC aims to facilitate the development of such guidelines by presenting a 10-point framework that is based on the pre-existing guidelines and literature and extensive peer review.     

Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC Task Force

The European Association for Palliative Care Task (EAPC) Force on the Development of Palliative Care in Europe was created in 2003 and the results of its work are now being reported in full, both here and in several other publications. The objective of the Task Force is to assess the degree of palliative care development in the European Region as defined by the World Health Organization (WHO). The Task Force is a collaboration between EAPC, the International Observatory on End of Life Care, Help the Hospices and the International Association for Hospice and Palliative Care. The University of Navarra have collaborated in the dissemination of results and is involved in further developments of this group. Four studies, each with different working methods, made up the study protocol: a literature review, a review of all the existing palliative care directories in Europe, a qualitative ;Eurobarometer' survey and a quantitative ;Facts Questionnaire' survey. The work of the Task Force covers the entire WHO European Region of 52 countries. In this article we present a comparative study on the development of palliative care in Europe, drawing on all four elements of the study.Different models of service delivery have been developed and implemented throughout the countries of Europe. For example, in addition to the UK, the countries of Germany, Austria, Poland and Italy have a well-developed and extensive network of hospices. The model for mobile teams or hospital support teams has been adopted in a number of countries, most notably in France. Day Centres are a development that is characteristic of the UK with hundreds of these services currently in operation. The number of beds per million inhabitants ranges between 45-75 beds in the most advanced European countries, to only a few beds in others. Estimates on the number of physicians working full time in palliative care are shown. The countries with the highest development of palliative care in their respective subregions as measured in terms of ratio of services per one million inhabitants are: Western Europe - UK (15); Central and Eastern Europe - Poland (9); Commonwealth of Independent States - Armenia (8). This paper also presents indicators on the development of palliative care based on the bibliometric analysis of scientific journals and on the vitality of the palliative care movement in each country.     

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians

Purpose

Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services.

Methods

Fifty-four physicians were interviewed on their most recent case of palliative sedation.

Results

Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation.

Conclusion

Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.     

Half of European cancer patients have moderate to severe pain: one in five patients does not receive treatment

Interim results from the European Pain in Cancer (EPIC) survey that were presented at the 2007 European Association of Palliative Care (EAPC) Congress in Budapest, Hungary, last May are described.     

The Impact of an Aging Population on Palliative Care

ABSTRACT

By 2050, it is predicted that 26% of the population will be aged 80 and over. Although older people have much to contribute, one challenging aspect of an aging population is the increasing rate of dementia. Palliative care is now included as part of the care pathway of a wide variety of nonmalignant diseases. The European Association for Palliative Care (EAPC) and the European Union Geriatric Medicine Society (EUGMS) have jointly called for every older citizen with chronic disease to be offered the best possible palliative care approach wherever they are cared for.

This report is adapted from paineurope 2013; Issue 2, ©Haymarket Medical Publications Ltd., and is presented with permission. paineurope is provided as a service to pain management by Mundipharma International LTD. and is distributed free of charge to healthcare professionals in Europe. Archival issues can be accessed via the website: http://www.paineurope.com at which European health professionals can register online to receive copies of the quarterly publication.     

The International Association for Hospice and Palliative Care list of essential medicines for palliative care

The World Health Organization (WHO) requested that the International Association for Hospice and Palliative Care (IAHPC) develop a list of essential drugs for palliative care to be included in the WHO list of essential drugs. This report describes the process by which this specialized list was developed and the outcomes of that process.     

Patient demographics and centre description in European palliative care units

Patients in palliative care are elderly, frail and in decline with multisystem disease. These and other factors make palliative care research particularly challenging, and has been one of several reasons why relatively little systematic research has been performed. The European Association for Palliative Care (EAPC) is seeking to emphasise the importance of research. The present project is the first empirical multicentre study organised by the EAPC Research Network, with the aim of identifying the patient population using specialised palliative care, and identifying a network of palliative care services across Europe, able to participate in a multicentre collaboration for research. During a designated week in the autumn of 2000, data on patients were recorded from 143 centres. The survey was carried out by means of two questionnaires, one centre questionnaire and one patient questionnaire. Data were submitted on 3013 patients from 22 different European countries. Almost all patients had cancer (94%), while some had neurological disease (3%). The majority (75%) had been referred to a palliative care service during the six to seven months before the survey was performed. Very few patients had less than one week of expected survival (6%), the majority were expected to live one to six months, while as many as 16% were expected to live more than one year. The majority of the patients (27%) were fully ambulatory--the ability to walk independently without any assistance. The majority of the patients (60%) received care as an outpatient, either at a traditional clinic in an outpatient cancer hospital (12%), in home-care programs from a specialised advisory service (24%), or external nursing care (24%). The population of patients included in this survey was not a sample of dying patients. There were a substantial number of patients with an anticipated life expectancy of more than six months. The study demonstrated a considerable enthusiasm for research in the palliative care community across Europe. The heterogeneity of the sample is evident, and this will need careful consideration for future clinical trials. This calls for an international consensus on how to report on patient characteristics within palliative care research. This is necessary in order to be able to evaluate the representativity of the study population, as well as to compare data between studies. The range of services encountered in the survey highlights the need for the organisational and clinical standards for palliative care, which can be audited.     

Uganda: delivering analgesia in rural Africa: opioid availability and nurse prescribing

Hospice Africa Uganda introduced palliative medicine to Uganda in 1993 with enough funds to support a team of three clinicians for three months. Training in the medical and nursing schools was introduced in 1994. Since then, Uganda has achieved the three essential components of an effective public health strategy. It has also been the first country to have palliative care described as an essential clinical service and included in both the government's Strategic Health Plan and its HIV/AIDS National Strategic Framework (in 2000 and 2004), and to change the law to allow nurses and clinical officers who complete special training in palliative medicine at Hospice Uganda to prescribe morphine. Palliative care is spreading throughout the districts of Uganda, ensuring that morphine will be available to everyone who needs it. This is being done in collaboration with the Ministry of Health (MOH) and other organizations that collaborate in two umbrella organizations: the Palliative Care Association of Uganda and the Uganda Palliative Care Country Team. The former works "on the ground" in each district, establishing standards, collaborating, and carrying out continuing medical education in palliative care for all. The latter, chaired by the MOH, operates with the government to implement an integrated, coordinated, affordable, and culturally acceptable palliative care service throughout the country.     

Ensuring palliative medicine availability: the development of the IAHPC list of essential medicines for palliative care

In response to a request from the World Health Organization (WHO), the International Association for Hospice and Palliative Care (IAHPC) developed a List of Essential Medicines for Palliative Care based on the consensus of palliative care workers from around the world. IAHPC designed a process of five steps, which included developing a set of ethical guidelines; identifying the most common symptoms in palliative care; identifying a list of medications to treat those symptoms; carrying out a survey using a modified Delphi process with participants from developed and developing countries; and convening a meeting of representatives from regional, international, and scientific organizations to develop the final list. Twenty-one symptoms were identified as the most common in palliative care, and an initial list of 120 medications resulted from the initial survey. Seventy-one participants from developing and developed countries responded to the Delphi survey and agreed on the effectiveness and safety of 48 medications for 18 of the 21 symptoms. The final step included discussions among representatives from 26 organizations, which led to the finalization of the list. The IAHPC List of Essential Medicines for Palliative Care includes 33 medications, of which 14 are already included in the WHO Model List. The participants agreed that there is too little evidence to recommend medications for five of the symptoms and suggested that further research be carried out to solve this need. The IAHPC and all the organizations involved in this process welcome suggestions on ways to continue to improve the List of Essential Medicines for Palliative Care and to improve access to medications for patients in need.     

The International Association for Hospice and Palliative Care: international activities and future initiatives

The International Association for Hospice and Palliative Care (IAHPC) is a global organization dedicated to the development and improvement of palliative care. The mission of IAHPC is to increase the availability and access to high quality hospice and palliative care for patients and families throughout the world. It does this by promoting communication, facilitating and providing education, and by becoming an information resource for patients, professionals, health care providers and policy makers around the world. This report describes activities of the IAHPC throughout the word and planned future initiatives.     

Barriers to the Development of Palliative Care in the Countries of Central and Eastern Europe and the Commonwealth of Independent States

During the years of communist rule in the countries of Central and Eastern Europe (CEE) and the Commonwealth of Independent States (CIS), there were few significant palliative care developments. Since the political changes of the 1990s, however, there has been a steady development of palliative care services in this region. In 2005, the European Association for Palliative Care Task Force for the Development of Palliative Care in Europe undertook a qualitative survey among boards of national associations to identify barriers to the development of palliative care in CEE and CIS. By July 2006, 44 of 52 (85%) European countries had responded to the survey, but we report here on the specific results from 22 of 27 (81%) countries in CEE and CIS. Data were analyzed thematically by geographic region and by the degree of development of palliative care in each country. Four significant barriers to the development of palliative care were identified: 1) financial and material resources; 2) problems relating to opioid availability; 3) lack of public awareness and government recognition of palliative care as a field of specialization; and 4) lack of palliative care education and training programs. Despite huge variations in the levels of provision across the countries of CEE and the CIS, data collected in the qualitative survey reveal that the development of palliative care in many countries continues to remain uneven, uncoordinated, and poorly integrated across wider health care systems, mainly as a result of inadequate investment and limited palliative care service capacity.     

Global warming in the palliative care research environment: adapting to change

Advocates of palliative care research have often described the cold and difficult environment that has constrained the development of research internationally. The development of palliative care research has been slow over the last few decades and has met with resistance and sometimes hostility to the idea of conducting research in 'vulnerable populations'. The seeds of advocacy for research can be found in palliative care literature from the 1980s and early 1990s. Although we have much to do, we need to recognize that palliative care research development has come a long way. Of particular note is the development of well-funded collaboratives that now exist in Europe, Canada, Australia and the USA. The European Association for Palliative Care and the International Association for Hospice and Palliative Care has recognized the need to develop and promote global research initiatives, with a special focus on developing countries. Time is needed to develop good research evidence and in a more complex healthcare environment takes increasingly more resources to be productive. The increased support (global warming) evident in the increased funding opportunities available to palliative care researchers in a number of countries brings both benefits and challenges. There is evidence that the advocacy of individuals such as Kathleen Foley, Neil MacDonald, Balfour Mount, Vittorio Ventafridda, Robert Twycross and Geoff Hanks is now providing fertile ground and a much friendlier environment for a new generation of interdisciplinary palliative care research. We have achieved many of the goals necessary to avoid failure of the 'palliative care experiment', and need to accept the challenge of our present climate and adapt and take advantage of the change.     

A statewide status report on hospital-based palliative care programs

The Center to Advance Palliative Care (CAPC) has attempted to identify hospitals providing palliative care services in its 2008 state-by-state report, and currently through the web-based Palliative Care Provider Directory of Hospitals. To augment those efforts for one state, a survey was conducted to explore how many hospitals reported having palliative care services and how well those services met consensus recommendations. Survey results show that a majority (82?%) of hospitals continue to lack palliative care programs, and even knowledge of palliative care was limited. More education and training for physicians, health care staff, and the general public was recommended strongly.     

The Canadian Palliative Care Education Group

The Canadian Palliative Care Education Group, a committee of the Canadian Society of Palliative Care Physicians, carries out surveys from time to time on the status of palliative care education in Canadian medical schools. We describe the organization of the Canadian Palliative Care Education Group and report on a survey carried out in the 1996-97 academic year. Our data suggest that the emphasis on palliative care varies widely amongst the 16 Canadian medical schools, in concert with the availability of academic staff positions in palliative care. We conclude that the need for palliative care education is supported by rhetoric which remains to be matched by proportionate tangible investment.     

Education in children's palliative care across Europe and internationally

Ongoing education and training is essential in health care, particularly in palliative care, which is still expanding both in terms of its global reach and its scope. Children's palliative care (CPC) is a specialty in its own right, but one that is still relatively new, and so appropriate and ongoing education and training of CPC staff is especially important. However, such education and training is not always accessible to those who need it, and only recently have significant attempts been made to quantify the extent and nature of these deficiencies. This paper discusses CPC education and training from a European and global perspective, highlighting some of the principles and challenges. It also looks at the recent efforts of the European Association for Palliative Care and the International Children's Palliative Care Network to attain a clearer picture of the state of global CPC education, presenting some initial findings from their research and discussing preliminary recommendations and future directions.     

Usefulness,feasibility and face validity of the interRAI Palliative Care instrument according to care professionals in nursing homes: A qualitative study

BackgroundNursing homes are important locations for palliative care. High quality palliative care requires an evaluation of the different care needs of the nursing home residents. The interRAI Palliative Care instrument is a comprehensive assessment that evaluates the needs and preferences of adults receiving palliative care.ObjectivesThis study aims to evaluate the usefulness, feasibility and face validity of the interRAI Palliative Care instrument.DesignA qualitative study was conducted, based on the abductive reasoning approach.SettingFifteen nursing homes in Flanders (Belgium).ParticipantsCalls for participation were sent out by four umbrella organizations of Flemish nursing homes (Belgium) and at a national conference for nursing home staff. Nineteen care professionals (nurses, certified nursing assistants, psychologists, physiotherapists, quality coordinators and directors) of 15 nursing homes voluntarily agreed to participate in the study.MethodsDuring one year, care professionals evaluated the needs and preferences of all nursing home residents receiving palliative care by means of the interRAI Palliative Care instrument. Data on the usefulness, feasibility and face validity of the interRAI Palliative Care instrument were derived from notes, semi-structured interviews and focus groups with participating care professionals and were thematically analyzed and synthesized. Data were gathered between December 2013 and March 2015.ResultsIn general, the interRAI Palliative Care (interRAI PC instrument) is a useful instrument according to care professionals in nursing homes. However, care professionals made a series of recommendations in order to optimize the usefulness of the instrument. The interRAI PC instrument is not always feasible to complete because of organizational reasons. Furthermore, the face validity of the instrument could be improved since certain items are incomplete, lacking, redundant or too complex.ConclusionsFindings highlight the importance of adapting the content of the interRAI Palliative Care instrument for use in nursing homes. Furthermore, the use of the instrument should be integrated in the organization of daily care routines in the nursing homes. Tackling the critical remarks of care professionals will help to optimize the interRAI Palliative Care instrument and hence support palliative care of high quality in nursing homes.     

Department of Palliative Care in Bratislava and the development of the palliative care movement in Slovakia

 Slovakia is a country with no tradition of home care services and a long history of regarding death and dying as taboos and therefore institutionalising them. Increased attention to palliative care issues has resulted in some important changes, to the benefit of patients in need of palliative care. These include general availability of oral slow-release forms of strong opioids (cost completely reimbursed by the insurance companies), a developing network of home care agencies, and increased attention to the needs of palliative patients, especially among oncologists and pain specialists. In February 1995 the Department of Palliative Care was established within the National Cancer Institute in Bratislava. It has 19 in-patient beds and also an out-patient clinic. Although the primary goal is the improvement of the quality of life, several approaches that can prolong life without worsening its quality are also used. These include laser destruction of intraluminal gastrointestinal tumours, insertion of intraluminal stents, brachyradiotherapy, pleurodeses, percutaneous gastrostomy, percutaneous nephrostomy, palliative chemotherapy, treatment of hypercalcaemia. In 1995 the Palliative Care Section of the Association for Study and Treatment of Pain was established, as was thefirst Hospice Foundation.