Bart Van den Eynden

Promoting palliative care in the community: Production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care

Background: A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe. Aim: To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country. Design: (1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for general practitioners and specialists to make comments. Iterations of the toolkit were then presented at international palliative care and primary care conferences. Results: Being unable to identify appropriate patients for palliative care in the community was a major barrier internationally. The systematic review identified tools that might be used to help address this. Various facilitators such as national strategies were identified. A primary palliative care toolkit has been produced and refined, together with associated guidance. Conclusion: Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally.

Comprehensive and Integrated Palliative Care for People With Advanced Chronic Conditions: An Update From Several European Initiatives and Recommendations for Policy

The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.

Health care professionals' perceptions towards lifelong learning in palliative care for general practitioners: a focus group study.

BackgroundThere is a growing need for palliative care. The majority of palliative patients prefer their general practitioner (GP) to organize their palliative home care. General practitioners need a range of competences to perform this task. However, there has been no general description so far of how GPs keep these competences up-to-date. The present study explores current experiences, views and preferences towards training and education in palliative care among GPs, palliative home-care professionals and professionals from organizations who provide training and education.MethodsFive focus groups were brought together in Belgium, with a total of 29 participants, including members of the three categories mentioned above. They were analysed using a constant comparison method.ResultsThe analysis revealed that undergraduate education and continuing medical education (CME) while in practice, is insufficient to prepare GPs for their palliative work. Workplace learning (WPL) through collaboration with specialized palliative home-care nurses seems to be a valuable alternative.ConclusionsThe effectiveness of undergraduate education might be enhanced by adding practical experience. Providers of continuing medical education should look to organize interactive, practice-based and interprofessional sessions. Therefore, teachers need to be trained to run small group discussions. In order to optimize workplace learning, health care professionals should be trained to monitor each other’s practice and to provide effective feedback. Further research is needed to clarify which aspects of interprofessional teamwork (e.g. professional hierarchy, agreements on tasks and responsibilities) influence the effectiveness of workplace learning.

Preparing palliative home care nurses to act as facilitators for physicians' learning: Evaluation of a training programme.

Background: Palliative care requires a multidisciplinary care team. General practitioners often ask specialised palliative home care teams for support. Working with specialised nurses offers learning opportunities, also called workplace learning. This can be enhanced by the presence of a learning facilitator. Objectives: To describe the development and evaluation of a training programme for nurses in primary care. The programme aimed to prepare palliative home care team nurses to act as facilitators for general practitioners’ workplace learning. Design: A one-group post-test only design (quantitative) and semi-structured interviews (qualitative) were used. Methods: A multifaceted train-the-trainer programme was designed. Evaluation was done through assignments with individual feedback, summative assessment through videotaped encounters with simulation-physicians and individual interviews after a period of practice implementation. Results: A total of 35 nurses followed the programme. The overall satisfaction was high. Homework assignments interfered with the practice workload but showed to be fundamental in translating theory into practice. Median score on the summative assessment was 7 out of 14 with range 1–13. Interviews revealed some aspects of the training (e.g. incident analysis) to be too difficult for implementation or to be in conflict with personal preferences (focus on patient care instead of facilitating general practitioners’ learning). Conclusion: Training palliative home care team nurses as facilitator of general practitioners’ workplace learning is a feasible but complex intervention. Personal characteristics, interpersonal relationships and contextual variables have to be taken into account. Training expert palliative care nurses to facilitate general practitioners’ workplace learning requires careful and individualised mentoring.

What, how and from whom do health care professionals learn during collaboration in palliative home care: a cross-sectional study in primary palliative care

BackgroundPalliative care often requires inter-professional collaboration, offering opportunities to learn from each other. General practitioners often collaborate with specialized palliative home care teams. This study seeks to identify what, how and from whom health care professionals learn during this collaboration.MethodsCross-sectional survey in Belgium. All palliative home care teams were invited to participate. General practitioners (n = 267) and palliative care nurses (n = 73) filled in questionnaires.ResultsGeneral practitioners (GPs) and palliative care nurses learned on all palliative care aspects. Different learning activities were used. Participants learned from all others involved in patient care. The professionals’ discipline influences the content, the way of learning and who learns from whom. Multiple linear regression shows significant but limited association of gender with amount of learning by GPs (M < F; p = 0.042; Adj R2 = 0.07) and nurses (M > F; p = 0.019; Adj R2 = 0.01).ConclusionsThis study is the first to reveal what, how and from whom learning occurs during collaboration in palliative care. Training professionals in sharing expertise during practice and in detecting and adequately responding to others’ learning needs, could optimize this way of learning.

The landscape of postgraduate education in palliative care for general practitioners: results of a nationwide survey in Flanders, Belgium.

OBJECTIVE To describe the offer of continuing medical education (CME) in palliative care in Flanders, Belgium and to explore the way providers of CME address the preferences of general practitioners (GPs) towards CME. METHODS Questionnaire-survey among official providers of formal CME. RESULTS The response rate was 43%, equally distributed over all 5 provinces of Flanders. Data show large content gaps, an under usage of appropriate educational techniques and an absence of evaluation of the impact of CME on clinical practice. Providers of CME explain how they take the preferences of GPs concerning education in palliative care into account. CONCLUSIONS The present offer of CME is insufficient to educate GPs in palliative care. The absence of quality criteria and the lack of coordination between different providers results in an unattractive labyrinth of courses leaving GPs and their patients in the cold. PRACTICE IMPLICATIONS A comprehensive offer of CME sessions should be installed in a coordination between all providers. This could render the use of means (logistics and speakers) more efficient. Further research could look into other ways of acquiring palliative care competences such as evaluating the learning effect of GPs working together with specialized palliative home care teams.

Patients' nursing records revealing opportunities for interprofessional workplace learning in primary care: a chart review study

Background: Working and learning go hand in hand during interprofessional collaborative practice. Patients′ nursing records are designed to record patient care and health status. It is not known whether these records are also used to keep track of interprofessional contacts or interprofessional learning between team members. This study explored the usefulness of patients′ nursing records in optimising interprofessional workplace learning for general practitioners. Methods: We utilized a descriptive retrospective chart review. All palliative home care teams of the Dutch speaking part of Belgium were involved. Throughout the year 2010, a representative sample of patient charts was selected. Characteristics of encounters between general practitioners and palliative care nurses were extracted from the charts. Results: Detailed accounts of interprofessional contacts were found in the charts. Palliative care nurses recorded number and type of contacts, topics discussed during contacts and general practitioner′s learning activities. Discussion: Palliative care nurses are sensitive and open towards the general practitioners′ learning needs. Patients′ nursing records provide useful information for interprofessional team discussions on workplace learning. Healthcare professionals should be trained to respond to each other′s learning needs.

Implementation of a Care Pathway for Primary Palliative Care in 5 research clusters in Belgium: quasi-experimental study protocol and innovations in data collection (pro-SPINOZA)

BackgroundStarting with early identification of palliative care patients by general practitioners (GPs), the Care Pathway for Primary Palliative Care (CPPPC) is believed to help primary health care workers to deliver patient- and family-centered care in the last year of life. The care pathway has been pilot-tested, and will now be implemented in 5 Belgian regions: 2 Dutch-speaking regions, 2 French-speaking regions and the bilingual capital region of Brussels. The overall aim of the CPPPC is to provide better quality of primary palliative care, and in the end to reduce the hospital death rate.The aim of this article is to describe the quantitative design and innovative data collection strategy used in the evaluation of this complex intervention.Methods/DesignA quasi-experimental stepped wedge cluster design is set up with the 5 regions being 5 non-randomized clusters. The primary outcome is reduced hospital death rate per GPs’ patient population. Secondary outcomes are increased death at home and health care consumption patterns suggesting high quality palliative care.Per research cluster, GPs will be recruited via convenience sampling. These GPs -volunteering to be involved will recruit people with reduced life expectancy and their informal care givers. Health care consumption data in the last year of life, available for all deceased people having lived in the research clusters in the study period, will be used for comparison between patient populations of participating GPs and patient populations of non-participating GPs. Description of baseline characteristics of participating GPs and patients and monitoring of the level of involvement by GPs, patients and informal care givers will happen through regular, privacy-secured web-surveys.Web-survey data and health consumption data are linked in a secure way, respecting Belgian privacy laws.DiscussionTo evaluate this complex intervention, a quasi-experimental stepped wedge cluster design has been set up. Context characteristics and involvement level of participants are important parameters in evaluating complex interventions. It is possible to securely link survey data with health consumption data. By appealing to IT solutions we hope to be able to partly reduce respondent burden, a known problem in palliative care research.Trial registrationClinicalTrials.gov Identifier: NCT02266069.

Postgraduate education on palliative care for general practitioners in Belgium

General practitioners (GPs) are highly dependent on postgraduate education to keep up their medical competences during their clinical career. This is even more important when it concerns palliative care competences since there is no mandatory undergraduate curriculum in palliative care in Belgium. Multiple organizations offer postgraduate education to GPs without central management of content or quality.

Influences on GP decision making for choice of CME sessions in palliative care

Most of palliative patients want to be taken care of at home by their general practitioner (GP) until the moment they die. GP’s need to continuously educate themselves in order to be able to perform this task. We want to know the learning needs of GP’s and the preferences and barriers they have towards continuing medical education (CME) in palliative care. We also want to know if organizers of CME share these insights and take them into account.Aim: After two large scale studies on medical end-of-life practices in Belgium in 1998 and 2001, we conducted a follow-up study in 2007 to investigate trends in frequency and characteristics of these practices and differences before and after the enactment of the laws on palliative care and on euthanasia in 2002. Methods: We drew a stratified at random sample of 6927 cases from all deaths that occurred between June and November 2007 in Flanders, Belgium and mailed questionnaires about medical end-of-life practices to the certifying physicians. Results: Response rate was 58.4%. In 2007, the rate of intensified pain alleviation in Flanders increased from 18.4% of all deaths in 1998 and 22.0% in 2001 to 26.7% in 2007, and that of non-treatment decisions from 14.6 % in 2001 to 17.4% in 2007. In 1.9% of all deaths physicians reported euthanasia, a rate that was higher than that in 1998 (1.1%) and 2001 (0.3%). The rate of lethal drug use without the patient’s explicit request was lower in 2007 (1.8% of all deaths) than that in 1998 (3.2%), but similar to that in 2001 (1.5%). No shift in characteristics of patients whose death was the result of using these drugs was found. In 14.5% of all deaths in 2007, physicians reported continuous and deep sedation until death, which was substantially more often than in 2001 (8.2%). In 2007, physicians discussed medical end-of-life practices more often with competent patients, relatives and colleagues than in 1998. Conclusion: The enactment of the Belgian laws on palliative care and on euthanasia was followed by an increase in all types of medical end-of-life practices, with the exception of the use of lethal drugs without patient’s explicit request. No shift toward the use of life-ending drugs in vulnerable patient groups was observed. The substantial increase in the frequency of deep sedation demands more in-depth research. Funding: Institute for the Promotion of Innovation by Science and Technology - Flanders.Aim: This study investigates attitudes towards physician-assisted death in minor patients of all physicians involved in the treatment of dying minor patients in Flanders, Belgium, and how these attitudes are related to physicians’ and patients’ characteristics and actual medical end-of-life practices. Method : Physicians signing death certificates of all 250 patients aged 1-17 years who died between June 2007 and November 2008 in Flanders, Belgium, were sent an anonymous questionnaire on their attitudes and end-of-life practices in the death concerned. Results : Response was obtained from 124 physicians for 71% of eligible cases (N=149). Sixty-nine percent of physicians favors an extension of the Belgian law on euthanasia to include minors, 27% thinks this should be done by setting clear age limits. Sixty-one percent thought parental consent is required before taking life-shortening decisions and 52% found the administration of a lethal drug to a non competent minor on parental request was acceptable. Cluster-analysis yielded a cluster acceptant of (68% of physicians) and a cluster (32% of physicians) reluctant towards physician-assisted death in minors. Controlling for physician specialty and patient characteristics, acceptant physicians were more likely to engage in various practices with a (co-)intention of shortening the patient’s life than reluctant physicians. Conclusion : A majority of Flemish physicians involved in the care of dying children seems to accept physician-assisted dying in children under certain circumstances and favors an amendment to the euthanasia law to include minor patients. The approach favored is assessing competency rather than setting an arbitrary age-limit. These stances may encourage policy-makers to develop guidelines for medical end-of-life practices in minors that address specific challenges arising in this patient group, including how children and parents should be involved in the decision-making process.Background: Up to 80% of people with cancer experience involuntary weight loss and difficulty eating. These symptoms of cancer cachexia syndrome can be experienced as distressing by both patients and their carers. The most effective way of managing weight- and eating-related distress is yet to be established. Aims: To report the first systematic review of the effect on symptom experience of psychosocial interventions offered to cancer patient-carer dyads. Methods: Searches were conducted of MEDLINE, EMBASE, PsycINFO and CINAHL databases, for studies of experimental design testing non-pharmacological interventions for patient-carer dyads experiencing cancer related problems. Limits were English language; 1998 to 9/2008; adults. 1534 abstracts were assessed against inclusion/exclusion criteria using a process involving two reviewers. Sixty publications were selected for full-text examination and 30 included in the review. Information relevant to the review question was extracted, quality assessed using the Cochrane Collaboration’s tool for assessing risk of bias, and presented as a narrative synthesis. Results: The 30 reviewed studies investigated patient and carer outcomes from interventions focused on i/ patients, ii/ carers, iii/ models of service delivery, iv/ couples. Generally, when a clearly defined non-pharmacological intervention was tested a beneficial effect was found. Few couple-focused interventions have been tested empirically. In two of the three studies that compared a couple with individual focused intervention, the couple focus was found superior (no effect was found in the third, lower quality, study). Conclusion: Couple based psychosocial interventions may have benefit for cancer patient-carer dyads. Further investigation is warranted of couple focused intervention for patient-carer dyads living with weight-and eating-related distress.number: 2 Abstract type: Plenary The European Pharmacogenetic Opioid Study (EPOS): Influence from Genetic Variability on Opioid Use in 2209 Cancer Pain Patients Klepstad P., Fladvad T., Skorpen F., Bjordal K., Caraceni A., Dale O., Davies A., Kloke M., Lundstrom S., Maltoni M., Radbruch L., Sabatowski R., Sigurdadottir V., Strasser F., Fayers P., Kaasa S., The European Palliative Care Research Collaborative (EPCRC) and The European Association for Palliative Care Research Council (EAPC-RN) Norwegian University of Science and Technology, Medical Faculty, Trondheim, Norway, Norwegian University of Science and Technology, Trondheim, Norway, Oslo University Hospital, Oslo, Norway, National Cancer Institute, Milan, Italy, The Royal Marsden NHS Foundation Trust, London, United Kingdom, Kliniken Essen-Mitte, Essen, Germany, Stockholms Sjukhem Foundation, Department of Palliative Medicine, Stockholm, Sweden, Valerio Grassi Hospice, Forli, Italy, RWTH Aachen University, Aachen, Germany, University Hospital ‘Carl Gustav Carus’ Dresden, Dresden, Germany, Landspitali University Hospital, Reykjavik, Iceland, Oncology and Palliative Care Center, St Gallen, Switzerland, Department of Public Health University of Aberdeen, Aberdeen, United Kingdom Background: Cancer pain patients vary in opioid doses. Preclinical and clinical studies suggest that opioid efficacy is related to genetic variability. However, the studies have small samples, findings are not validated or replicated, and some candidate genes are not studied. This is the first large population study to assess the associations of genetic variability with opioid doses using a confirmatory validation population. Methods: 2209 adult Caucasian cancer patients using a WHO step III opioid were included at 20 centers in 11 European countries. SNPs in genes reported to influence opioid efficacy or with a putative influence on opioid mechanisms were analyzed (SNPlex Genotyping System). Non-genetic factors that predicted opioid dose (pain, time on opioids, age, gender, Karnofsky performance status (KPS) and bone or CNS metastases) were included as covariates. The patients were randomly divided into one development sample, and one validation sample used for confirmatory tests on the SNPs initially detected. Results: Mean age was 62 years, mean KPS was 59 and mean average pain intensity was 3.5. The patients used morphine (n=830, mean 202 mg/24h), oxycodone (n=446, mean 141 mg/24h), fentanyl (n=699, mean 78 mg/h) or other opioids (n=234). In the primary analyzes none of 123 SNPs in the genes OPRM1, OPRD1, OPRK1, ARRB2, GNAZ, HINT, Stat6, ACBB1, COMT, HRH1, ADRA2A, MC1R, TACR1, GCH1, DRD2, DRD3, HTR3A, HTR3B, HTR 2A, HTR3C, HTR3D, HTR3E, HTR1 or CNR1 showed significant associations with opioid dose in both the development and the validation analyzes. Conclusion: Genetic variability in 123 SNPs in 25 candidate genes did not predict the need for opioids in 2209 cancer pain patients. The study demonstrates the importance to validate findings obtained in genetic association studies in order to avoid the report of spurious associations. More comprehensive results, interpretations and future directions for gene symptom interactions EPOS analyses will be presented. Abstract number: 3 Abstract type: Plenarynumber: 3 Abstract type: Plenary Does Increasing Advance Care Planning Reduce Terminal Hospitalizations among Nursing Home Residents? Teno J.M., Gozalo P., Mitchell S., Bynum J., Dosa D., Mor V. Brown University, Community Health, Providence, United States, Harvard Medical School, Boston, United States, Dartmouth College, Hanover, United States Objective: Terminal hospitalizations are costly and often avoidable with appropriate advance care planning (ACP). This study examined changes in ACP as measured by written DNR orders in US Nursing Homes (NH) and whether changes in facility rate of DNR orders is associated with reduction in terminal transfers of NH residents to die in a hospital. Design, setting, and participants: Nursing home panel study of whether increasing rates of DNR orders is associated with reductions in terminal hospitalizations controlling for changes in facility characteristics (staffing, use of NP/PA, case mix of nursing residents, admission volume, racial composition, payer mix). Main outcomes measures: Facility rate of terminal hospitalizations in the last 7 days of life between 1999 and 2007. Results: The average facility rate of terminal hospitalizations was 15.7% with some fluctuation between 1999 (15.4) and 2007 (14.9%). Nursing homes with initially low rates of DNR orders that increased to higher rates had lower terminal hospital admission rates in 2007 (9.9%) than facilities with continuously low DNR rates (20.7%). Even after applying a multivariate fixed effect model with an instrumental variable, the effect of DNR order rate on terminal hospitalization was .049 (95% CI -.044, -.055) indicating that for every 10% increase in DNR orders there was 0.49% decrease in terminal hospitalizations. This rate an be compared to the increase of .55% in the terminal hospitalization rate when a NH became disproportionately dependent on Medicaid funding or the .37% decrease in terminal hospitalization rate associated with adding a nurse practitioner to the clinical staff complement. Conclusion: Nursing homes that improved advance care planning practices as measured by facility rate of DNR orders revealed significantly lower rates of terminal hospitalizations. This research was funded by the US National Institute of Aging, that is part of the US National Institute of Health. Research into the cognitively impaired Abstract number: 5 Abstract type: Invited lecturenumber: 5 Abstract type: Invited lecture Acute Cognitive Failure and Delirium in Palliative Care: The Role of Opioid Analgesics and Other Potentially Reversible Causes Palliative Medicine 2010; 24: S5 S229 ! The Author(s), 2010. Reprints and permissions: sagepub.co.uk/journalsPermissions.nav 10.1177/0269216310366390 Gagnon P., Gaudreau J.-D. Centre Hospitalier Univerisitaire de Québec HDQ, Psycho-oncologie, Québec, QC, Canada, Université Laval, Faculty of Pharmacy, Québec, QC, Canada, Université Laval, Faculty of Pharmacy and Department of Psychiatry, Québec, QC, Canada Aim: Review the associations between opioids, psychoactive medications, and other potentially reversible causes of delirium in palliative care. Methods: Data were obtained from three prospective studies conducted at our center and from a critical review of the literature. Two prospective observational studies were conducted to measure delirium incidence and associated factors. Another multicenter study of delirium prevention in terminal cancer was conducted among seven palliative care units in Canada. The Nursing Delirium Screening Scale, the Confusion Rating Scale and the Confusion Assessment Method were used. Results: The literature review remains equivocal as to which medication is clearly involved in inducing delirium. In two of our studies, opioids were associated with the development of delirium, especially at a dosage over 90 mg. of morphine equivalent per day. Corticosteroids, at a threshold of 15 mg. dexamethasone equivalent per day, and Benzodiazepines, above 2 mg. of lorazepam equivalent per day, were also associated with delirium in one of our study. However, the role of benzodiazepines remains controversial as it was associated with a lower incidence of symptoms of hyperactive delirium in our multicenter study. Other drugs, such as co-analgesics and anticonvulsants, are also often suspected as being delirogenic. Other reversible causes, such as alcohol or benzodiazepine withdrawal, hypercalcemia, infections, and pulmonary embolism must also be considered. These factors are especially critical in patients with past history of delirium who are at a higher risk. Conclusion: Opioids remain the most frequent reversible cause of delirium in palliative care, especially at higher dosage. Benzodiazepines and corticosteroids are also often identified as potential reversible causes of delirium in studies, as are many other drugs and pathologies. All these factors should be carefully considered in delirium prevention, especially in patients at a higher risk. Epidemiology and Policy Abstract number: 8 Abstract type: Oralnumber: 8 Abstract type: Oral Why Are Men at Increased Risk of Depression Compared to Women in Palliative Care? Hayes R.D., Lee W., Rayner L., Price A., Hotopf M. Institute of Psychiatry / King’s College London, General Hospital Psychiatry, London, United Kingdom Aim: To identify potential explanatory factors for the excess depression found among men in palliative care to identify clinically relevant risk markers for depression in men and women. Methods: 300 participants recruited as new patients of a large hospice in South East London were interviewed. Depression was measured using a validated instrument: the Primary Care Evaluation of Mental Disorder (PRIME-MD). Further data were collected during the interview and from case records. Results: The higher prevalence of depression in men was not explained by a higher prevalence of particular types of cancer in men nor due to confounding by age, ethnicity, cancer stage, social support, religious beliefs, loss of dignity and time until death. Interactions between gender and other variables were examined. Needing any help with daily tasks was significantly associated with depression in men only. This association was not affected by marital status, level of social support, ethnicity or age. We also observed a dose response relationship between the degree to which men needed help with basic tasks and the proportion of men who were depressed (P for trend=0.01), but the reverse trend for women (P=0.04) (see table).