Tania Pastrana

A matter of definition – key elements identified in a discourse analysis of definitions of palliative care:

For more than 30 years, the term “palliative care” has been used. From the outset, the term has undergone a series of transformations in its definitions and consequently in its tasks and goals. There remains a lack of consensus on a definition. The aim of this article is to analyse the definitions of palliative care in the specialist literature and to identify the key elements of palliative care using discourse analysis: a qualitative methodology. The literature search focused on definitions of the term ‘palliative medicine’ and ‘palliative care’ in the World Wide Web and medical reference books in English and German. A total of 37 English and 26 German definitions were identified and analysed. Our study confirmed the lack of a consistent meaning concerning the investigated terms, reflecting on-going discussion about the nature of the field among palliative care practitioners. Several common key elements were identified. Four main categories emerged from the discourse analysis of the definition of palliative care: target groups, structure, tasks and expertise. In addition, the theoretical principles and goals of palliative care were discussed and found to be key elements, with relief and prevention of suffering and improvement of quality of life as main goals. The identified key elements can contribute to the definition of the concept ‘palliative care’. Our study confirms the importance of semantic and ethical influences on palliative care that should be considered in future research on semantics in different languages.

Outcome indicators in palliative care—how to assess quality and success. Focus group and nominal group technique in Germany

PurposeThe call for clinically relevant outcome criteria has been raised, as assessment of adequate quality of service providers is essential with increasing momentum in the development of palliative care in most European countries. The aim of this study is to investigate important dimensions and indicators for assessment and evaluation of palliative care from the perspective of multi-disciplinary German experts working over years in the field of palliative care.MethodsA focus group, using the structured consensus method of the improved nominal group technique (INGT), with nine experts from different disciplines was conducted in Germany.ResultsAn abundance of topics (16) were identified, pointing at the complexity of the issue. Main topics were: quality of life, needs assessments of patients and relatives, resource assessment, surveillance of decision-making processes, as well as spiritual well-being. The following properties were claimed as essential for outcome criteria sensitivity, without additional burden on patients, easy applicability, scientific validity, and helpful for communication within the team, ethical discussions as well as for quality management.ConclusionsThe study identified topics considered important by experts in clinical practise. The discussions exposed the diversity of demands on outcome assessment put up by different stakeholder groups. This and the high number of relevant items show the complexity for the agreement on a unique set of outcome criteria. Further research considering other perspectives is needed.

Outcome assessment instruments in palliative and hospice care—a review of the literature

BackgroundAs different definitions for PC have been used across the last three decades, a common terminology is lacking. To ensure quality of care, (a) a consensus on outcome criteria and indicators and (b) validated and applicable outcome assessment instruments are necessary. The aim of this study is to systematically review instrument for outcome assessment that have been used or proposed for research and clinical practice in palliative care.MethodA systematic literature search in electronic databases Cinahl, MEDLINE, EMBASE, and PsychoINFO until December 2009 was conducted to identify articles describing outcome assessment in palliative care. Following extraction of relevant publications, the outcome assessment instruments were categorized in outcome domains and target groups.ResultsThe literature search resulted in 8,607 hits. Deduplication and exclusion of irrelevant or unavailable publications allowed for 725 publications which were analyzed in detail. At least 528 different outcome assessment instruments were applied. Four target groups were identified: patients, family members, staff members, and the health care system. Fifteen patient domains were identified: quality of life, quality of care, symptoms and problems, performance status, psychological symptoms, decision-making and communication, place of death, stage of disease, mortality and survival, distress and wish to die, spirituality and personality, disease-specific outcomes, clinical features, meaning in life, and needs. The majority of instruments were found only in single cases and a minority of instruments were validated. Validated instruments were used more often.ConclusionsThe wide scope of existing instruments makes consensus on a universal set of instruments for outcome assessment in palliative care improbable. A framework with a set of appropriate instruments could help (1) to harmonize the variety of tools used in research and clinical practice, (2) to allow for more comparability, and (3) to define gaps were tools maybe missing and should be developed.

Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

BackgroundIn North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored.MethodsSemi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis.ResultsFour main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective.ConclusionsPredominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.

Palliative care development in Latin America: an analysis using macro indicators.

Background: Recently, the Latin American Association for Palliative Care developed 10 indicators to monitor the development of palliative care and enhance the development of regional and national strategies. Aim: To compare the status of palliative care development across Latin American nations using the Latin American Association for Palliative Care indicators and to classify the countries into three levels of palliative care development. Methods: A secondary analysis using the following indicators (number of indicators in each category): Policy (1), Education (3), Service Provision (3), and Opioids (3). A Latin American Association for Palliative Care Index was constructed adding the standard score (z-score) of each indicator. Setting/participants: Nineteen Spanish and Portuguese-speaking countries of Latin America. Results: Indicators significantly associated with the number of palliative care services per million inhabitants included: the proportion of medical schools with palliative care at the undergraduate level (p = 0.003), the number of accredited physicians working in palliative care (p = 0.001), and opioids consumed per capita (p = 0.032). According to the Latin American Association for Palliative Care Index, Costa Rica registered the highest score (8.1). Three ranking groups were built to measure palliative care development; Costa Rica, Chile, Mexico, and Argentina ranked in the high group, while Bolivia, Honduras, Dominican Republic, and Guatemala ranked in the lowest group. Conclusion: Most of the Latin American Association for Palliative Care indicators are useful for assessing national levels of palliative care development. These indicators may be applicable to other world regions. Additional studies are needed to evaluate the specificity of each indicator.

Disparities in the Contribution of Low- and Middle-Income Countries to Palliative Care Research

CONTEXT Important aspects of the palliative care needs of patients from low- and middle-income countries (LMIC) are largely unexplored. About 44 million of the 56 million annual deaths worldwide occur in developing countries, and it is estimated that more than 33 million of those concerned would benefit from palliative care. In this context, the understanding of specific social and cultural needs is fundamental to the development of appropriate health policy and clinical practice concerning palliative and end-of-life care. OBJECTIVES This study aims to answer the question: what are the contributions, in terms of generation of knowledge, of LMIC to the published palliative care literature? METHODS A bibliometric analysis was conducted in Medline and EMBASE (to June 2008). Articles were included when either the first author (institutional affiliation or contact address) or the data collection was derived from LMIC, as defined by criteria of the World Bank. Excluded were articles done in migrant and non-palliative care populations. RESULTS The literature search resulted in 845 references. In total, 245 articles coming from LMIC were identified, being published by 34 LMIC (27.3% of LMIC). The first publications appeared in 1982. The study shows a rather modest contribution of publications from LMIC. However, the volume of publications within LMIC is distributed unequally: upper-middle-income countries published almost half of the articles (46.9%), whereas only 11% of the publications came from low-income countries. In contrast, 104 LMIC (72.7% of LMIC) do not have any registered publications. Surprisingly, 25% of the articles with data from LMIC have been done and published by high-income countries. Reasons for the underrepresentation, as well a possible correction of this imbalance, are discussed. CONCLUSION Palliative care research should be a priority in LMIC, where many patients could benefit tremendously from it, and publication of findings in these countries should be encouraged.

Palliative care research in Latin America and the Caribbean: from the beginning to the Declaration of Venice and beyond.

BACKGROUND Research in palliative care has increased significantly in the last decade, while the vast majority of the global disease burden occurs in developing countries. AIMS To explore the palliative care research activity in Latin America and the Caribbean (LAC) and its visibility in the international palliative care literature, with a special focus on research studies. METHODS A bibliometric analysis was conducted in MEDLINE(®), Embase(®), PsycINFO(®), and CINAHL(®). Inclusion criteria were: (1) articles published in peer-reviewed scientific journals; (2) main subject was palliative care; (3) research study; (4) the first author or coauthors was based in LAC; and/or (5) the data collected derived from LAC. RESULTS One hundred six articles from 10 countries were identified in the literature research. The first publication dates from 1989 and was a qualitative study in Brazil. This study shows a modest contribution of publications from LAC. However, the volume of publications within the region is distributed unequally, reflecting the heterogeneity of the region: Brazil published more than half of the articles, while 35 countries have no publications. Most of the studies were quantitative research, predominantly cross-sectional studies. Qualitative studies often used interviews. Health care service was the most researched issue. Seventy percent of studies were carried out in institutions. CONCLUSIONS Palliative care research should have a place in LAC. The development of a regional research agenda tailored to the needs and features of the region considering the health care structure and local resources available is indispensable.

Die Sterbehilfedebatte und das Bild der Palliativmedizin in deutschen Printmedien

ZusammenfassungDie Diskussionen um Sterbehilfe und Patientenverfügung sowie der Ruf nach einer Stärkung der Palliativmedizin nehmen viel Platz in der deutschen Presselandschaft ein. Da Zeitungen einerseits Meinungen und Wissen der Bevölkerung abbilden, andererseits auch zu deren Meinungsbildung und Information beitragen, wurde eine Analyse der Darstellung der Sterbehilfedebatte und der Palliativmedizin durchgeführt. Als empirisches Material dienten 433 Artikel aus den Jahren 2006 und 2007, die mithilfe einer Suche nach den Schlagworten „Palliativmedizin“, „Hospiz“, „Sterbebegleitung“, „Patientenverfügung“, „Patientenautonomie“ und „Sterbehilfe“ in den Print-Archiven verschiedener deutscher Zeitungen identifiziert wurden. Diese Artikel wurden einer qualitativen Inhaltsanalyse unterzogen. Mit Würde, Selbstbestimmung, Unterversorgung und Unsicherheit zeigten sich vier Hauptargumente innerhalb der Sterbehilfedebatte. Würde wird dabei als Argument sowohl für wie gegen aktive Sterbehilfe benutzt. Eine Unsicherheit zeigt sich in der Terminologie der Sterbehilfe. Das Bild der Palliativmedizin ist gekennzeichnet von der Hoffnung, dass sie eine Alternative zur Sterbehilfe bieten kann, sofern sie weiter ausgebaut und besser finanziert wird. Die Ergebnisse bestätigen die in verschiedenen Studien aufgezeigte Bedeutung der Begriffe Würde und Selbstbestimmung für die Einstellung der Bevölkerung zu Sterbehilfe, Suizidbeihilfe und Patientenverfügungen. Das Potential und die noch zu gering ausgebauten Strukturen der Palliativmedizin werden zunehmend erkannt. Demgegenüber erschwert das mangelnde Wissen um die Sterbehilfe-Terminologie und die rechtlichen Grundlagen der Therapiebegrenzung und Patientenverfügungen eine Diskussion um die Sterbehilfe auch auf fachlicher Ebene.AbstractBackground In Germany the discussion about euthanasia and physician assisted suicide is prevalent in the media. This study will analyse the way German newspapers represent the discussion about the end of life and how they report about palliative medicine. Methods A qualitative data analysis was performed of 433 articles published in the years 2006 and 2007 in different German newspapers. The archives of the selected newspapers were searched for “palliative medicine”, “hospice”, “patient’s autonomy”, “patient’s will”, “euthanasia” and “terminal care”. Results Dignity, autonomy, inadequate provision of care and uncertainties were identified as the major topics in the debate about euthanasia. Dignity was used both as an argument for and against legislation of euthanasia. The terminology on euthanasia is not used consistently in Germany. Palliative medicine is described as a possible alternative to euthanasia which should be developed and reimbursed better. Conclusion These findings underline the importance of dignity and autonomy for the public opinion on the end of life. The media show the potential of palliative medicine as an alternative to euthanasia but claim further development of palliative care. The inconsistencies in terminology as well as in the content of end of life decisions have to be clarified to allow an objective discussion. Politicians and the medical profession should know about the public statements and opinions, to react adequately to patient’s fears and allowances.

Opportunities for Palliative Care in Public Health

In May 2014, the World Health Assembly, of the World Health Organization (WHO), unanimously adopted a palliative care (PC) resolution, which outlines clear recommendations to the United Nations member states, such as including PC in national health policies and in the undergraduate curricula for health care professionals, and highlights the critical need for countries to ensure that there is an adequate supply of essential PC medicines, especially those needed to alleviate pain. This resolution also carries great challenges: Every year over 20 million patients (of which 6% are children) need PC at the end of life (EOL). However, in 2011, approximately three million patients received PC, and only one in ten people in need is currently receiving it. We describe this public health situation and systems failure, the history and evolution of PC, and the components of the WHO public health model. We propose a role for public health for PC integration in community settings to advance PC and relieve suffering in the world.

Accuracy of the Distress Thermometer for home care patients with palliative care needs in Germany.

OBJECTIVE Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home. METHOD Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected. RESULTS A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0-40 = 30.3%, 50-70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (<3) and -LR = 0.203 (<0.3). SIGNIFICANCE OF RESULTS The DT performed satisfactorily compared to the HADS in screening for distress in our study and can be employed as an instrument for identification of patients with distress. Consequent to the high prevalence of distress, we recommend its routine use for screening distressed persons at home with palliative care needs in order to offer adequate support.