This is an RSS newsfeed from BioMed Central It is intended to be used with an RSS reader. For more information about RSS newsfeeds from BioMed Central, visit http://www.biomedcentral.com/info/about/rss/ http://www.biomedcentral.com/bmcpalliatcare/ The latest articles from BMC Palliative Care (ISSN 1472-684X) published by BioMed Central Background: To analyze how seven Canadian hospice palliative care (HPC) centres and one national surveillance dataset compare with respect to the collection of forty data elements. Research and service delivery implications of the findings are discussed. Methods: The data sources consisted of data elements and data definitions collected in a computer based format from seven HPC centres and one surveillance dataset. The data was structured into five themes: demographic, patient death, support, contact or informal caregiver; program/ consultations/service request, and clinical. Each theme contains a number of data elements with a total of 40 data elements included in the analysis. Comparative analysis was done on the data sets to compare the collection and data definitions. Results: Much variation exists in data collection around HPC delivery. Such variation prevents any timely and meaningful comparison of service and care delivery across HPC centres. Patient death data, service/program data and clinical data is particularly varied. Conclusions: Developing a common minimum data set is a logical starting point to help overcome data variations between care centres. Greater coordination is needed between care centres and the development of national standards and policies. Moving towards electronic data collection would help facilitate common policy and practice norms. http://www.biomedcentral.com/1472-684X/7/6 Craig E Kuziemsky and Francis Lau BMC Palliative Care 2008, 7:6 2008-05-12 doi:10.1186/1472-684X-7-6 BMC Palliative Care 1472-684X 7 6 2008-05-12 Background: Recent research shows that the prevalence of patients with very severe chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and chronic renal failure (CRF) continues to rise over the next years. Scientific studies concerning self-perceived symptoms and care needs in patients with severe to very severe COPD, CHF and CRF are scarce. Consequently, it will be difficult to develop an optimal patient-centred palliative care program for patients with end-stage COPD, CHF or CRF. The present study has been designed to assess the symptoms, care needs, end-of-life care treatment preferences and communication needs of patients with severe to very severe COPD, CHF or CRF. Additionally, family distress and care giving burden of relatives of these patients will be assessed. DesignA cross-sectional comparative and prospective longitudinal study in patients with end-stage COPD, CHF or CRF has been designed. Patients and their closest relatives will be visited at baseline and every 4 months after baseline for a period of 12 months. The following outcomes will be assessed during home visits: self-perceived symptoms and care needs; daily physical functioning; general health status; end-of-life care treatment preferences; end-of-life care communication and care-giver burden of family caregivers. Additionally, end-of-life care communication and prognosis of survival will be assessed with the physician primarily responsible for the management of the chronic organ failure. Finally, if patients decease during the study period, the baseline preferences with regard to life-sustaining treatments will be compared with the real end-of-life care.DiscussionTo date, the symptoms, care needs, end-of-life care treatment preferences and communication needs of patients with very severe COPD, CHF or CRF remain unknown. The present study will increase the knowledge about the symptoms, care-needs, end-of-life care treatment preferences and communication needs from the views of patients, their loved ones and their treating physician. This knowledge is necessary to optimize palliative care for patients with COPD, CHF or CRF. Here, the study protocol is published to inform others on the possibilities of performing end-of-life care research. A preliminary analysis of the possible strengths, weaknesses, clinical consequences and opportunities for further the research is outlined. http://www.biomedcentral.com/1472-684X/7/5 Daisy JA Janssen, Emiel FM Wouters, Jos MGA Schols and Martijn A Spruit BMC Palliative Care 2008, 7:5 2008-05-06 doi:10.1186/1472-684X-7-5 BMC Palliative Care 1472-684X 7 5 2008-05-06 Background: Most people prefer home palliation but die in an institution. Some experience decisional conflict when weighing options regarding place of care. Clinicians can identify decisional needs and provide decision support, yet generally lack skills and confidence in doing so. This study aims to determine whether the quality of clinicians' decision support can be improved with a brief, theory-based, skills-building intervention. Theory: The Ottawa Decision Support Framework (ODSF) guides an evidence based, practical approach to assist clinicians in providing quality decision support. The ODSF proposes that decisional needs [uncertainty, knowledge, values clarity, support, personal characteristics] strongly influence the quality of decisions patients make. Clinicians can improve the quality of those decisions by providing decision support to address decisional needs [clarify decisional needs, provide facts, probabilities, clarify values, support/guide deliberation, monitor/facilitate progress]. Methods: The efficacy of a brief education intervention will be assessed in a two-phase study. In phase one a focused needs assessment will be conducted with key informants. Phase two is a randomized control trial where clinicians will be allocated to an intervention or control group. The intervention, informed by a focused needs assessment, knowledge transfer best practices and the ODSF, comprises an online tutorial; an interactive skills building workshop; a decision support protocol; performance feedback, and educational outreach. Participants will be assessed: a) at baseline (quality of decision support); b) after the tutorial (knowledge); and c) four weeks after the other interventions (quality of decision support, intention to incorporate decision support into practice and perceived usefulness of intervention components). Between group differences in the primary outcome (quality of decision support scores) will be analyzed using ANOVA. DiscussionFew studies have investigated the efficacy of an evidence-based, theory guided intervention aimed at assisting clinicians to strengthen their patient decision support skills. Expanding our understanding of how clinicians can best support palliative patients' decision-making will help to inform best practices in patient-centered palliative care. There is potential transferability of lessons learned to other care situations such as chronic condition management, advance directives and anticipatory care planning. Should the efficacy evaluation reveal clear improvements in the quality of decision support provided by clinicians who received the intervention, a larger scale implementation and effectiveness trial will be considered. Trial registration: This study is registered as NCT00614003 http://www.biomedcentral.com/1472-684X/7/4 Mary Ann Murray, Annette O'Connor, Dawn Stacey and Keith G. Wilson BMC Palliative Care 2008, 7:4 2008-04-30 doi:10.1186/1472-684X-7-4 BMC Palliative Care 1472-684X 7 4 2008-04-30 Background: The cachexia-anorexia syndrome impacts on patients' physical independence and quality of life. New treatments are required and need to be evaluated using acceptable and reliable outcome measures, e.g. the assessment of muscle function. The aims of this study were to: (i) examine the acceptability and reliability of the Cybex NORM dynamometer to assess muscle function in people with non-small cell lung cancer or mesothelioma; (ii) compare muscle function in this group with healthy volunteers and; (iii) explore changes in muscle function over one month. Methods: The test consisted of 25 repetitions of isokinetic knee flexion and extension at maximal effort while seated on a Cybex NORM dynamometer. Strength and endurance for the quadriceps and hamstrings were assessed as peak torque and total work and an endurance ratio respectively. Thirteen patients and 26 volunteers completed the test on three separate visits. Acceptability was assessed by questionnaire, reliability by intraclass correlation coefficients (ICC) and tests of difference compared outcomes between and within groups. Results: All subjects found the test acceptable. Peak torque and work done were reliable measures (ICC >0.80), but the endurance ratio was not. Muscle function did not differ significantly between the patient and a matched volunteer group or in either group when repeated after one month. Conclusion: For patients with non-small cell lung cancer or mesothelioma, the Cybex NORM dynamometer provides an acceptable and reliable method of assessing muscle strength and work done. Muscle function appears to be relatively well preserved in this group and it appears feasible to explore interventions which aim to maintain or even improve this. http://www.biomedcentral.com/1472-684X/7/3 Andrew Wilcock, Matthew Maddocks, Mary Lewis, Paul Howard, Jacky Frisby, Sarah Bell, Bisharat El Khoury, Cathann Manderson, Helen Evans and Simon Mockett BMC Palliative Care 2008, 7:3 2008-04-10 doi:10.1186/1472-684X-7-3 BMC Palliative Care 1472-684X 7 3 2008-04-10 Background: Discrepancies between the information that patients have received and the patients' awareness of their condition have frequently been observed in literature and given a number of different explanations. The chief contribution of this study is that by following patients over time it is possible not only to notice any changes in the patients' knowledge or awareness of their disease, but also to investigate the interview material for possible reasons for those changes. Since the study is based on two different groups of patients it will also be possible to notice if the category of disease matters for patients' awareness of their condition. Methods: Twelve patients with malign haematological diseases or lung cancer were followed with interviews from diagnosis to cure or death, or at most for two years. The method is qualitative. Semi-structured interviews were conducted, transcribed into written text, and then used for a qualitative content analysis. Results: During the process of analysis four different expressions (subcategories) emerged about the awareness of patients concerning their health status: informed and aware, not informed and not aware, aware though not informed, or not aware though informed. Then the search started for obstacles to the awareness of patients regarding their progressing disease and approaching death. Four kinds of obstacles were found: due to the physician, the patient, the physician and the patient in collusion, or neither to the physician nor the patient but the insidious way in which lung cancer (mostly) and haematological malignancies (occasionally) progress. Conclusion: To optimize the care of patients who wish to be informed and aware during their disease, it is important that the health care staff recognizes potential obstacles to the awareness of patients in order to minimize such obstacles. The physicians could improve their communication with patients with life-threatening diseases, and avoid having a narrow focus on the treatment calendar. The patients could be encouraged to have a more proactive attitude in their communication with their physician. http://www.biomedcentral.com/1472-684X/7/2 Lena Hoff and Göran Hermerén BMC Palliative Care 2008, 7:2 2008-02-28 doi:10.1186/1472-684X-7-2 BMC Palliative Care 1472-684X 7 2 2008-02-28 Background: Knowledge about the quality and organisation of care to terminally ill cancer patients with a relatives' view in a primary health care setting is limited.The aim of the study is to analyse experiences and preferences of bereaved relatives to terminally ill cancer patients in a primary care setting to explore barriers and facilitators for delivery of good palliative home care. Methods: Three focus group interviews with fourteen bereaved relatives in Aarhus County, Denmark. Results: Three main categories of experience were identified: 1) The health professionals' management, where a need to optimize was found. 2) Shared care, which was lacking. 3) The relatives' role, which needs an extra focus. Conclusion: Relatives experience insufficient palliative care mainly due to organizational and cultural problems among professionals. Palliative care in primary care in general needs improvement and attention should be drawn to the "professionalization" of the relatives and the need to strike a balance between their needs, wishes and resources in end-of-life care and bereavement. http://www.biomedcentral.com/1472-684X/7/1 Mette Asbjoern Neergaard, Frede Olesen, Anders Bonde Jensen and Jens Sondergaard BMC Palliative Care 2008, 7:1 2008-01-15 doi:10.1186/1472-684X-7-1 BMC Palliative Care 1472-684X 7 1 2008-01-15 Background: Much money and energy has been spent on the study of the molecular biology of malignant brain tumours. However, little attention has been paid to the wishes of patients afflicted with these incurable tumours, and how this might influence treatment considerations. Methods: We interviewed 29 individuals – 7 patients dying of a malignant brain tumor and 22 loved ones. One-on-one interviews were conducted according to a pre-designed interview guide. A combination of open-ended questions, as well as clinical scenarios was presented to participants in order to understand what is meaningful and valuable to them when determining treatment options and management approaches. The results were analyzed, coded, and interpreted using qualitative analytic techniques in order to arrive at several common overarching themes. Results: Seven major themes were identified. In general, respondents were united in viewing brain cancer as unique amongst malignancies, due in large part to the premium placed on mental competence and cognitive functioning. Importantly, participants found their experiences, however difficult, led to the discovery of inner strength and resilience. Responses were usually framed within an interpersonal context, and participants were generally grateful for the opportunity to speak about their experiences. Attitudes towards religion, spirituality, and euthanasia were also probed. Conclusion: Several important themes underlie the experiences of brain cancer patients and their caregivers. It is important to consider these when managing these patients and to respect not only their autonomy but also the complex interpersonal toll that a malignant diagnosis can have. http://www.biomedcentral.com/1472-684X/6/7 Nir Lipsman, Abby Skanda, Jonathan Kimmelman and Mark Bernstein BMC Palliative Care 2007, 6:7 2007-11-08 doi:10.1186/1472-684X-6-7 BMC Palliative Care 1472-684X 6 7 2007-11-08 Background: End-of-life care has become an issue of great clinical and public health concern. From analyses of official death certificates, we have societal knowledge on how many people die, at what age, where and from what causes. However, we know little about how people are dying. There is a lack of population-based and nationwide data that evaluate and monitor the circumstances of death and the care received in the final months of life. The present study was designed to describe the places of end-of-life care and care transitions, the caregivers involved in patient care and the actual treatments and care provided to dying patients in Belgium. The patient, residence and healthcare characteristics associated with these aspects of end-of-life care provision will also be studied. In this report, the protocol of the study is outlined.Methods/DesignWe designed a nationwide mortality follow-back study with data collection in 2005 and 2006, via the nationwide Belgian Sentinel Network of General Practitioners (GPs) i.e. an existing epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian population. All GPs were asked to report weekly, on a standardized registration form, every patient (>1 year) in their practice who had died, and to identify patients who had died "non-suddenly." The last three months of these patients' lives were surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality.DiscussionIn 2005 and 2006, respectively 1385 and 1305 deaths were identified of which 66% and 63% died non-suddenly. The first results are expected in 2007. Via this study, we will build a descriptive epidemiological database on end-of-life care provision in Belgium, which might serve as baseline measurement to monitor end-of-life care over time. The study will inform medical practice as well as healthcare authorities in setting up an end-of-life care policy. We publish the protocol here to inform others, in particular countries with analogue GP surveillance networks, on the possibilities of performing end-of-life care research. A preliminary analysis of the possible strengths, weaknesses and opportunities of our research is outlined. http://www.biomedcentral.com/1472-684X/6/6 Lieve Van den Block, Viviane Van Casteren, Reginald Deschepper, Nathalie Bossuyt, Katrien Drieskens, Sabien Bauwens, Johan Bilsen and Luc Deliens BMC Palliative Care 2007, 6:6 2007-10-08 doi:10.1186/1472-684X-6-6 BMC Palliative Care 1472-684X 6 6 2007-10-08 Background: The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO)' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated.Methods/DesignThe evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS), pain (VAS), and burden for family caregivers (BSFC). The inclusion of physicians and patients in the study starts in March 2007.DiscussionAlthough participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. Trial registration: The study was registered at ‘current controlled trials (CCT)’, registration number: ISRCTN78021852. http://www.biomedcentral.com/1472-684X/6/5 Thomas Rosemann, Katja Hermann, Antje Miksch, Peter Engeser and Joachim Szecsenyi BMC Palliative Care 2007, 6:5 2007-05-29 doi:10.1186/1472-684X-6-5 BMC Palliative Care 1472-684X 6 5 2007-05-29 Background: "Terminal sedation" regarded as the use of sedation in (pre-)terminal patients with treatment-refractory symptoms is controversially discussed not only within palliative medicine. While supporters consider terminal sedation as an indispensable palliative medical treatment option, opponents disapprove of it as "slow euthanasia". Against this background, we interviewed medical ethics experts by questionnaire on the term and the moral acceptance of terminal sedation in order to find out how they think about this topic. We were especially interested in whether experts with a professional medical and nursing background think differently about the topic than experts without this background. Methods: The survey was carried out by questionnaire; beside the provided answering options free text comments were possible. As test persons we chose the 477 members of the German Academy for Ethics in Medicine, an interdisciplinary society for medical ethics. Results: 281 completed questionnaires were returned (response rate = 59%). The majority of persons without medical background regarded "terminal sedation" as an intentional elimination of consciousness until the patient's death occurs; persons with a medical background generally had a broader understanding of the term, including light or intermittent forms of sedation. 98% of the respondents regarded terminal sedation in dying patients with treatment-refractory physical symptoms as acceptable. Situations in which the dying process has not yet started, in which untreatable mental symptoms are the indication for terminal sedation or in which life-sustaining measures are withdrawn during sedation were evaluated as morally difficult. Conclusion: The survey reveals a great need for research and discussion on the medical indication as well as on the moral evaluation of terminal sedation. Prerequisite for this is a more precise terminology which describes the circumstances of the sedation. http://www.biomedcentral.com/1472-684X/6/4 Alfred Simon, Magdalene Kar, José Hinz and Dietmar Beck BMC Palliative Care 2007, 6:4 2007-04-16 doi:10.1186/1472-684X-6-4 BMC Palliative Care 1472-684X 6 4 2007-04-16