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Luc Deliens

luc.deliens@vub.ac.be

Journal articles

2008
 
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Reginald Deschepper, Larissa Grigoryan, Cecilia StÃ¥lsby Lundborg, Geert Hofstede, Joachim Cohen, Greta Van Der Kelen, Luc Deliens, Flora M Haaijer-Ruskamp (2008)  Are cultural dimensions relevant for explaining cross-national differences in antibiotic use in Europe?   BMC Health Serv Res 8: 06  
Abstract: BACKGROUND: Antibiotics are widely-used medicines for which a more prudent use has been advocated to minimize development of resistance. There are considerable cross-national differences that can only partially be explained by epidemiological difference and variations in health care structure. The aim of this study was to explore whether cross-national differences in use of antibiotics (prescribed and non-prescribed) are associated with differences between national cultures as described in Hofstede's model of cultural dimensions (Power Distance, Individualism, Masculinity, Uncertainty Avoidance and Long-Term Orientation). METHODS: Country-level data of prescribed antibiotic use and self-medication with antibiotics were correlated to country-specific scores of cultural dimensions obtained from Hofstede. Data on use of antibiotics were provided by three European studies, based on different methods and/or countries: Self-medication with Antibiotics and Resistance in Europe (SAR), based on a survey in 2003 on reported use of antibiotics in 19 countries, the European Surveillance on Antimicrobial Consumption, based on distribution and reimbursement of antibiotics in ambulatory care (1997-2002), and the 2002 interview-based Eurobarometer study, asking whether respondents had taken antibiotics in the previous 12 months. These studies provided data on antibiotics use for 27 European countries in total, for which scores of cultural dimensions were also available. The SAR-study differentiated between prescribed antibiotics and self-medication with antibiotics. RESULTS: Significant positive correlations were found for Power Distance Index with use of prescribed antibiotics in the three studies (rho between 0.59 and 0.62) and with self-medication (rho = 0.54) in the SAR study. Positive significant correlations were found for the Uncertainty Avoidance Index with the use of antibiotics as reported in two studies (rho between 0.57 and 0.59; for the SAR study the correlations were insignificant). Masculinity was not significantly correlated, except in one study after controlling for GDP (r = 0.81). For Individualism and Long-Term Orientation no significant correlations were found. CONCLUSION: Power Distance is a cultural aspect associated with antibiotic use, suggesting that the culture-specific way people deal with authority is an important factor in explaining cross-national differences in antibiotic use. There are indications that Uncertainty Avoidance also plays a role but further research is needed to better understand the complex effect of cultural dimensions.
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Els Inghelbrecht, Johan Bilsen, Freddy Mortier, Luc Deliens (2008)  Factors related to the involvement of nurses in medical end-of-life decisions in Belgium: a death certificate study.   Int J Nurs Stud 45: 7. 1022-1031 Jul  
Abstract: BACKGROUND: Although nurses play an important role in end-of-life care for patients, they are not systematically involved in end-of-life decisions with a possible or certain life-shortening effect (ELDs). Until now we know little about factors relating to the involvement of nurses in these decisions. OBJECTIVE: To explore which patient- and decision-characteristics are related to the consultation of nurses and to the administering of life-ending drugs by nurses in actual ELDs in institutions and home care, as reported by physicians. METHOD: We sampled at random 5005 of all registered deaths in the second half of 2001--before euthanasia was legalized--in Flanders, Belgium. We mailed anonymous questionnaires to physicians who signed the death certificates and asked them to report on ELDs, including nurses' involvement. RESULTS: Response rate was 59% (n=2950). Physicians reported nurses involved in decision making more often in institutions than at home, and more often in care homes for the elderly than in hospitals (OR 1.70, 95% CI 1.15, 2.52). This involvement was more frequently when physicians intended to hasten the patient's death than when they had no such intention (institutions: OR 2.05, 95% CI 1.41, 2.99; home: OR 2.04, 95% CI 1.19, 3.49). In institutions, this involvement was also more likely where patients were of lower rather than higher education (OR 2.95, 95% CI 1.49, 5.84). The administering of life-ending drugs by nurses, as reported by physicians was also found more frequently in institutions than at home, and in institutions more frequently with lower rather than higher educated patients (p=.037). CONCLUSIONS: These findings raise questions about physicians' perception of the nurse's role in ELDs, but also about physicians' skills in interacting with all patients. Education and guidelines for physicians and nurses are needed to optimize good communication and to promote a clearer assignment of responsibilities concerning the execution of those decisions.
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Reginald Deschepper, Jan L Bernheim, Robert Vander Stichele, Lieve Van den Block, Eva Michiels, Greta Van Der Kelen, Freddy Mortier, Luc Deliens (2008)  Truth-telling at the end of life: a pilot study on the perspective of patients and professional caregivers.   Patient Educ Couns 71: 1. 52-56 Apr  
Abstract: OBJECTIVE: To describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange. METHODS: In-depth interviews with 17 terminal patients selected through GPs and staff members of Flemish palliative care centres, and 3 focus groups with different professional caregivers. Analysis was based on grounded theory. RESULTS: There was considerable variability in the preferences of patients regarding when and how they wanted to be informed of their diagnosis, prognosis, expected disease course and end-of-life decisions. Major ambivalence was observed regarding the degree to which patients wanted to hear 'the whole truth'. Patients and caregivers agreed that truth-telling should be a 'dosed and gradual' process. Several barriers to more complete and timely truth-telling were identified. CONCLUSION: The preferences of both patients and caregivers for step-by-step--and hence slow and limited--information prevents terminal patients from reaching the level of information needed for informed end-of-life decision-making. PRACTICE IMPLICATIONS: The preference of patients and caregivers to 'dose' the truth may entail some risks, such as a 'Catch 22' situation in which both patients and caregivers wait for a signal from each other before starting a dialogue about impending death.
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Smets, Bilsen, Cohen, Rurup, De Keyser, Deliens (2008)  The medical practice of euthanasia in Belgium and The Netherlands: Legal notification, control and evaluation procedures.   Health Policy Nov  
Abstract: OBJECTIVES: To describe and compare current legal procedures for notifying, controlling and evaluating (NCE-procedures) euthanasia in Belgium and the Netherlands, and to discuss the implications for a safe and controllable euthanasia practice. METHODS: We systematically studied and compared official documents relating to the Belgian and the Dutch NCE-procedures for euthanasia. RESULTS: In both countries, physicians are required to notify their cases to a review Committee, stimulating them to safeguard the quality of their euthanasia practice and to make societal control over the practice of euthanasia possible. However, the procedures in both countries differ. The main differences are that the Dutch notification and control procedures are more elaborate and transparent than the Belgian, and that the Belgian procedures are primarily anonymous, whereas the Dutch are not. Societal evaluation is made in both countries through the Committees' summary reports to Parliament. CONCLUSIONS: Transparent procedures like the Dutch may better facilitate societal control. Informing physicians about the law and the due care requirements for euthanasia, and systematic feedback about their medical actions are both pivotal to achieving efficient societal control and engendering the level of care needed when performing such far-reaching medical acts.
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J Cohen, J Bilsen, J Addington-Hall, R Löfmark, G Miccinesi, S Kaasa, B Onwuteaka-Philipsen, L Deliens (2008)  Population-based study of dying in hospital in six European countries.   Palliat Med 22: 6. 702-710 Sep  
Abstract: This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales (N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.
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Kenneth Chambaere, Johan Bilsen, Joachim Cohen, Geert Pousset, Bregje Onwuteaka-Philipsen, Freddy Mortier, Luc Deliens (2008)  A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders, Belgium: research protocol.   BMC Public Health 8: 08  
Abstract: BACKGROUND: Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue. This article presents the protocol drafted for the 2007 ELD Study in Flanders, Belgium, and outlines how the main aims and challenges of the study (i.e. making reliable incidence estimates of end-of-life decisions, even rare ones, and describing their characteristics; allowing comparability with past ELD studies; guaranteeing strict anonymity given the sensitive nature of the research topic; and attaining a sufficient response rate) are addressed in a post-mortem survey using a representative sample of death certificates. STUDY DESIGN: Reliable incidence estimates are achievable by using large at random samples of death certificates of deceased persons in Flanders (aged one year or older). This entails the cooperation of the appropriate administrative authorities. To further ensure the reliability of the estimates and descriptions, especially of less prevalent end-of-life decisions (e.g. euthanasia), a stratified sample is drawn. A questionnaire is sent out to the certifying physician of each death sampled. The questionnaire, tested thoroughly and avoiding emotionally charged terms is based largely on questions that have been validated in previous national and European ELD studies. Anonymity of both patient and physician is guaranteed through a rigorous procedure, involving a lawyer as intermediary between responding physicians and researchers. To increase response we follow the Total Design Method (TDM) with a maximum of three follow-up mailings. Also, a non-response survey is conducted to gain insight into the reasons for lack of response. DISCUSSION: The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions. There are however also some limitations to the study design.
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Borgsteede, Deliens, Zuurmond, Schellevis, Willems, Van der Wal, van Eijk (2008)  Prescribing of pain medication in palliative care. A survey in general practice.   Pharmacoepidemiol Drug Saf 18: 1. 16-23 Nov  
Abstract: PURPOSE: To examine what pain and adjuvant medication is prescribed in palliative care patients at home in The Netherlands. METHODS: In a nationwide, representative, prospective study in general practice in The Netherlands, prescribed medication was registered in 95 general practices with a listed population of 374 070 patients. The GPs identified those who received palliative care in a retrospective survey of the 2169 patients who died within the 1-year study period. We analysed the analgesics, laxatives and anti-emetics that were prescribed during the last 3 months of life for these patients. RESULTS: The response rate of the survey was 74%. 425 patients received palliative care and 73% of them were prescribed pain medication: 55% a non-opioid analgesic (paracetamol, NSAIDs), 21% a weak opioid (tramadol, codeine), and 51% a strong opioid. Relatively more younger than older patients were prescribed strong opioids, and more cancer than non-cancer patients were prescribed an analgesic. During the last 3 months of life, the proportion of patients prescribed a non-opioid or a weak opioid increased gradually. The proportion of patients prescribed a strong opioid increased considerably nearing the patient's death. About one third of the non-cancer patients were prescribed strong opioids, mostly commencing in the last 2 weeks before death. In 48% of all patients with an opioid prescription, the GP did not prescribe a laxative. CONCLUSIONS: Weak opioids and laxatives are frequently omitted from pain regimens in palliative care at home in The Netherlands. Copyright (c) 2008 John Wiley & Sons, Ltd.
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Katrien Drieskens, Johan Bilsen, Lieve Van Den Block, Reginald Deschepper, Sabien Bauwens, Wim Distelmans, Luc Deliens (2008)  Characteristics of referral to a multidisciplinary palliative home care team.   J Palliat Care 24: 3. 162-166  
Abstract: INTRODUCTION: Until now, in Belgium at least, no scientific information has been available about which patients are referred to multidisciplinary palliative home care teams (MHCT) and by which caregivers, nor about timing of referral and factors associated with it. METHODS: A prospective cohort study was carried out during a nine-month period in the oldest Flemish MHCT, and included all patients for whom a palliative care trajectory had been initiated. RESULTS: In total, 325 patients (54% male, mean age 71 years, 83% cancer patients) were referred: 25% by their GP, 24% by hospital social workers, and 22% by the patient's family. Median timing of referral was 26 days (IQR 8-78) before death. Patients of 75 years or older were more likely to have been referred later by comparison with younger patients. DISCUSSION: Timely referral to a MHCT seems to be difficult and not equal for all patients. Referral timing varies largely by age groups and diseases.
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De Gendt, Bilsen, Mortier, Vander Stichele, Deliens (2008)  End-of-Life Decision-Making and Terminal Sedation among Very Old Patients.   Gerontology Oct  
Abstract: Background: About half of the persons who die in developed countries are very old (aged 80 years or older) and this proportion is still rising. In general, there is little information available concerning the circumstances and quality of the end of life of this group. Objective: This study aims (1) to describe the incidence and characteristics of medical end-of-life decisions with a possible or certain life-shortening effect (ELDs) and terminal sedation among very old patients who died nonsuddenly, (2) to describe the characteristics of the preceding decision-making process, and (3) to compare this with the deaths of younger patients. Methods: A sample of 5,005 death certificates was selected from all deaths in Flanders (Belgium) in the second half of 2001 (before euthanasia was legalized). Questionnaires were mailed to the certifying physicians. Results: Response rate was 58.9%. An ELD was made for 53.6% very old (aged 80+) patients who died nonsuddenly (vs. 63.3% for the younger patients). Use of life-ending drugs occurred among 1.1% (six times less frequently than in younger patients), with no euthanasia cases, pain and symptom alleviation with a possible life-shortening effect among 27.3% (two times less frequently), and withholding or withdrawing life-prolonging treatments among 25.2% (slightly more frequently). Terminal sedation occurred among 6.9% of the cases, two times less frequently than for the younger patients. ELDs were not often discussed with very old patients. Among competent patients this was less than compared with younger patients. Conclusion: ELDs are less common for very old than for younger patients. Physicians seem to have a more reluctant attitude towards the use of lethal drugs, terminal sedation and participation in decision-making when dealing with very old patients. Advance care planning should increase the involvement of very old competent and noncompetent patients in end-of-life decision-making.
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Lieve Van den Block, Reginald Deschepper, Nathalie Bossuyt, Katrien Drieskens, Sabien Bauwens, Viviane Van Casteren, Luc Deliens (2008)  Care for patients in the last months of life: the Belgian Sentinel Network Monitoring End-of-Life Care study.   Arch Intern Med 168: 16. 1747-1754 Sep  
Abstract: BACKGROUND: Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life care (physical, psychosocial, or spiritual) in a representative sample of dying persons in Belgium. METHODS: We performed a mortality follow-back study in 2005 (Sentinel Network Monitoring End-of-Life Care [SENTI-MELC] study). Data were collected via the nationwide Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all Belgian general practitioners. Each week, all 205 participating practices reported all deaths of patients in their practice and registered the care provided in the final 3 months of life. Sudden, unexpected deaths were excluded. RESULTS: We studied 892 deaths. General practitioners, nurses or geriatric caregivers, and informal caregivers were often involved in end-of-life care in 76%, 78%, and 75% of cases, respectively. Specialist multidisciplinary palliative care services were provided in 41% of cases. Two to 3 months before death, a palliative treatment goal was in place for 37% of patients, increasing to 81% in the last week of life (P < .001). Two to 3 months before death, physical, psychosocial, and spiritual care was provided to a (very) large extent to 84%, 36%, and 10% of patients, respectively. These numbers increased to 90%, 54%, and 25%, respectively, in the last week of life (P < .001). CONCLUSIONS: In Belgium, most dying patients have both formal and informal caregivers. Provision of specialist palliative care is far less frequent. A transition from cure to palliation often occurs late in the dying process and sometimes not at all. Psychosocial and spiritual care is delivered considerably less frequently than physical care.
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2007
 
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Johan Bilsen, Robert Vander Stichele, Bert Broeckaert, Freddy Mortier, Luc Deliens (2007)  Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium.   Soc Sci Med 65: 4. 803-808 Aug  
Abstract: Changes in medical practices during transitions in regulating healthcare are rarely investigated. In this study, we investigated changes in medical end-of-life decisions with a possible or certain life-shortening effect (ELDs) that occurred during the legalization process of euthanasia in Belgium. We took representative random samples from deaths reported to registries in Flanders, Belgium in 1998 (n=3999) at the beginning of the process and in 2001 (N=5005), at the end of the process. The reporting physicians received an anonymous mail questionnaire about possible ELDs preceding the death involved. We found no significant shifts in the epidemiology of diseases between 1998 and 2001. The overall incidence of ELDs did not change. The incidence decreased for euthanasia, administering life-ending drugs without patient's explicit request, and alleviation of pain and symptoms with life-shortening co-intention. Incidence increased for alleviation of pain and symptom without life-shortening intention, and remained stable for non-treatment decisions. All decisions in 2001 were more often discussed with patients, their relatives and nurses. In 2001, continuous deep sedation was reported in 8.3% of deaths. We can conclude that physicians' end-of-life practices have substantially changed during the short but tumultuous legalization process of euthanasia in Belgium. Although follow-up research is needed to investigate the continuance of these changes, it is important for policy makers to keep in mind that social factors related to transitions in healthcare regulation may play an important role in the physicians' actual behaviour.
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Astrid M Vrakking, Agnes van der Heide, Veerle Provoost, Johan Bilsen, Gerrit van der Wal, Luc Deliens (2007)  End-of-life decision making in neonates and infants: comparison of The Netherlands and Belgium (Flanders).   Acta Paediatr 96: 6. 820-824 Jun  
Abstract: AIM: We compared the results of two recent studies on end-of-life decisions (ELDs) for neonates and infants in Belgium (Flanders) and The Netherlands. METHODS: Questionnaires were sent to physicians who reported the death of a child under the age of 1 (Belgium: n = 292, response 87%; Netherlands: n = 249, response 84%). The questionnaires included structured questions about whether death had been preceded by ELDs, and about the decision-making process. RESULTS: In both countries, in about 25% of all deaths a life-sustaining treatment was withheld, and in about 40% pain or other symptoms were alleviated taking into account that death might be hastened. In Belgium, a life-sustaining treatment was less often withdrawn than in The Netherlands (32% vs. 50%, respectively). Drugs were administered with the explicit intention of hastening death in similar percentages of all deaths (Belgium: 7%; Netherlands: 9%). Dutch physicians more often than Belgian physicians discussed ELDs with parents (96% vs. 81%, respectively), and with colleague physicians (94% vs. 80%, respectively). CONCLUSIONS: End-of-life decision making in severely ill neonates seems to be rather similar in Belgium and The Netherlands. Differences are that Dutch physicians more often withdraw life-sustaining treatment. Furthermore, parents and colleague physicians are more often involved in the decision making in The Netherlands.
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Lieve Van den Block, Reginald Deschepper, Katrien Drieskens, Sabien Bauwens, Johan Bilsen, Nathalie Bossuyt, Luc Deliens (2007)  Hospitalisations at the end of life: using a sentinel surveillance network to study hospital use and associated patient, disease and healthcare factors.   BMC Health Serv Res 7: 05  
Abstract: BACKGROUND: Hospital deaths following several hospital admissions or long hospital stays may be indicative of a low quality of dying. Although place of death has been extensively investigated at population level, hospital use in the last months of life and its determinants have been studied less often, especially in Europe and with a general end-of-life patient population. In this study we aim to describe hospital use in the last three months of life in Belgium and identify associated patient, disease and healthcare factors. METHODS: We conducted a retrospective registration study (13 weeks in 2004) with the Belgian Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian patient population. All registered non-sudden or expected deaths of patients (aged one year or older) at the GPs' practices were included. Bivariate and regression analyses were performed. RESULTS: The response rate was 87%. The GPs registered 319 deaths that met inclusion criteria. Sixty percent had been hospitalised at least once in the last three months of life, for a median of 19 days. The percentage of patients hospitalised increased exponentially in the last weeks before death; one fifth was admitted in the final week of life. Seventy-two percent of patients hospitalised at least once in the final three months died in hospital. A palliative treatment goal, death from cardiovascular diseases, the expression of a wish to die in an elderly home and palliative care delivery by the GP were associated with lower hospitalisation odds. CONCLUSION: Hospital care plays a large role in the end of patients' lives in Belgium, especially in the final weeks of life. The result is a high rate of hospital deaths, showing the institutionalised nature of dying. Patients' clinical conditions, the expression of preferences and also healthcare characteristics such as being treated as a palliative care patient, seem to be associated with hospital transfers. It is recommended that hospitalisation decisions are only made after careful consideration. Short admissions in the final days of life should be prevented in order to make dying at home more feasible.
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Sander D Borgsteede, Luc Deliens, Corrie Graafland-Riedstra, Anneke L Francke, Gerrit van der Wal, Dick L Willems (2007)  Communication about euthanasia in general practice: opinions and experiences of patients and their general practitioners.   Patient Educ Couns 66: 2. 156-161 May  
Abstract: OBJECTIVE: Public opinion and professional organisations dominate the euthanasia debate, and there is a need to understand the opinions of people confronted with euthanasia. The aim of this study was to investigate whether patients and their GPs talk about euthanasia, and if so, how they communicate about this. METHODS: Qualitative, semi-structured interviews were held with 20 GPs and 30 of their patients in primary care in the Netherlands, where euthanasia is legalised. The patients had a life expectancy of less than 6 months, and cancer, heart failure or chronic obstructive pulmonary disease as underlying disease. RESULTS: Many patients did not communicate about euthanasia with their GP. Neither the patient nor the GP were clear in formulating their expectations concerning future decision making. CONCLUSION: The initial patient-GP communication consisted of an exchange of opinions about situations in which euthanasia would be desirable. GPs had different opinions about who should initiate communication, and found it difficult to judge the right moment to talk. PRACTICE IMPLICATIONS: It is essential to pay attention to education in communication about dying and euthanasia and to train the GPs to gain insight in the patient's end-of-life preferences, and to direct care at the best possible quality of life.
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Cindy De Gendt, Johan Bilsen, Robert Vander Stichele, Nele Van Den Noortgate, Margareta Lambert, Luc Deliens (2007)  Nurses' involvement in 'do not resuscitate' decisions on acute elder care wards.   J Adv Nurs 57: 4. 404-409 Feb  
Abstract: AIM: This paper reports the involvement of nurses in 'do not resuscitate' decision-making on acute elder care wards and their adherence to such decisions in the case of an actual cardiopulmonary arrest. BACKGROUND: Previous literature showed that nurses are involved in half or less than half of 'do not resuscitate' decisions in hospitals, but their involvement in this decision-making on acute elder care wards in particular has not been investigated. METHOD: A questionnaire was sent in 2002 to the head nurses of all acute elder care wards in Flanders, Belgium (n = 94). They were asked whether nurses had been involved in the last 'do not resuscitate' decision-making process on their ward and whether nurses 'never', 'rarely', 'sometimes', 'often' or 'always' started resuscitation in case of cardiopulmonary arrest of patients with 'do not resuscitate' status and of those without. RESULTS: The response rate was 86.2% (n = 81). In 74.7% of the last 'do not resuscitate' decisions on acute elder care wards in Flanders, a nurse was involved in the decision-making process. For patients with 'do not resuscitate' status, 54.3% of respondents reported that cardiopulmonary resuscitation was 'never' started on their ward, 'rarely' on 39.5% and 'sometimes' on 6.2%. For patients without 'do not resuscitate' status, nurses started cardiopulmonary resuscitation 'rarely' or 'sometimes' on 22.2% of all wards, and 'often' or 'always' on 77.8%. CONCLUSION: To make appropriate 'do not resuscitate' decisions and to avoid rash decision-making in cases of actual cardiopulmonary arrest, nurses should be involved early in 'do not resuscitate' decision-making. If institutional 'do not resuscitate' guidelines were to stress more clearly the important role of nurses in all kinds of end-of-life decisions, this might improve the 'do not resuscitate' decision-making process.
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Cindy De Gendt, Johan Bilsen, Nele Van Den Noortgate, Margareta Lambert, Robert Vander Stichele, Luc Deliens (2007)  Prevalence of patients with do-not-resuscitate status on acute geriatric wards in Flanders, Belgium.   J Gerontol A Biol Sci Med Sci 62: 4. 395-399 Apr  
Abstract: BACKGROUND: Elderly hospitalized patients have low survival rates after cardiopulmonary resuscitation, especially in the long term. This study aims to investigate the prevalence of patients with do-not-resuscitate (DNR) status on acute geriatric wards and the characteristics of the preceding decision-making process. METHODS: On all 94 geriatric wards in Flanders, Belgium (2002), the geriatrician who performed the bulk of clinical work was asked to fill in a retrospective structured mail questionnaire. RESULTS: The response rate was 72.3%. A DNR status was attributed to 20.3% of patients. A significant higher prevalence of patients with DNR status was found on wards with a geriatrician who had been active in patient care for 15 years or less and on wards with a DNR policy. Mostly, DNR status was attributed when the patient's condition declined (34.0%) or became critical (29.0%). Geriatricians consulted at least one person in 81.0% of the cases: (head) nurses in 72.2%, next of kin in 61.9%, the patient's general practitioner in 22.6%, and the patient him- or herself in 15.7%. Reasons stated to make a DNR decision were the prognosis (68.1%) and the physical condition of the patient (62.2%). Age was mentioned in only 21.1% of the cases, always in combination with other reasons. CONCLUSIONS: One fifth of patients on acute geriatric wards in Flanders have DNR status. The decision to attribute DNR status is most often made late in the course of the disease. (Head) nurses and the patient's next of kin are often consulted, the patient and his or her general practitioner rarely.
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Sander D Borgsteede, Luc Deliens, Barry Beentjes, François Schellevis, Wim A B Stalman, Jacques Th M Van Eijk, Gerrit Van der Wal (2007)  Symptoms in patients receiving palliative care: a study on patient-physician encounters in general practice.   Palliat Med 21: 5. 417-423 Jul  
Abstract: Most people with an incurable disease prefer to stay and die at home, cared for by their general practitioner (GP). This paper aims at describing the prevalence of symptoms in patients receiving palliative care at home. Within the framework of a nation wide survey of general practice in the Netherlands, GPs received a questionnaire for all patients who died within the 1-year survey period to determine whether patients received palliative care (n = 2,194). The response rate was 73% (n = 1,608), and 38% of these patients received palliative care until death. Information regarding encounters during the last 3 months of life was derived from the records kept by the GPs. Digestive symptoms (59%) and pain (56%) were the most prevalent. The total number of symptoms per patient was higher in cancer patients (11.99) than in non-cancer patients (7.62). Not reported in previous studies were musculoskeletal symptoms (20%) and chronic ulcer (18%). Concluding, this showed that Dutch GPs encounter a diversity and wide range of symptoms in palliative care. To face these complex challenges in patients receiving palliative care at home, GPs have to be trained as well as supported by specialized palliative care consultants.
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Sander D Borgsteede, Luc Deliens, Gerrit van der Wal, Anneke L Francke, Wim A B Stalman, Jacques T M van Eijk (2007)  Interdisciplinary cooperation of GPs in palliative care at home: a nationwide survey in The Netherlands.   Scand J Prim Health Care 25: 4. 226-231 Dec  
Abstract: OBJECTIVE: To investigate the occurrence and predictors of interdisciplinary cooperation of GPs with other caregivers in palliative care at home. DESIGN: In a prospective study among 96 general practices, the GPs involved identified all dying patients during the study period of 12 months. The GPs received an additional post-mortem questionnaire for each patient who died during the study period, and registered the healthcare providers with whom they cooperated. Multivariable logistic regression analysis was used to identify the predictors of GP cooperation with other caregivers. SETTING: Second Dutch National Survey in General Practice. SUBJECTS: A total of 743 patients who received palliative care according to their GP. MAIN OUTCOME MEASURES: Interdisciplinary cooperation between GP and other healthcare providers. RESULTS: During the study period, 2194 patients died. GPs returned 1771 (73%) of the questionnaires. According to the GPs, 743 (46%) of their patients received palliative care. In 98% of these palliative care patients, the GP cooperated with at least one other caregiver, with a mean number of four. Cooperation with informal caregivers (83%) was most prevalent, followed by cooperation with other GPs (71%) and district nurses (63%). The best predictors of cooperation between GPs and other caregivers were the patient's age, the underlying disease, and the importance of psychosocial care. CONCLUSION: In palliative care patients, GP interdisciplinary cooperation with other caregivers is highly prevalent, especially with informal caregivers and other primary care collaborators. Cooperation is most prevalent in younger patients, patients with cancer as underlying disease, and if psychosocial care is important.
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Eva Michiels, Reginald Deschepper, Greta Van Der Kelen, Jan L Bernheim, Freddy Mortier, Robert Vander Stichele, Luc Deliens (2007)  The role of general practitioners in continuity of care at the end of life: a qualitative study of terminally ill patients and their next of kin.   Palliat Med 21: 5. 409-415 Jul  
Abstract: OBJECTIVES: Exploring terminal patients' perceptions of GPs' role in delivering continuous end-of-life care and identifying barriers to this. DESIGN: Qualitative interview study with patients (two consecutive interviews). SETTING: Primary care Belgium. PARTICIPANTS: Seventeen terminally ill cancer patients, informed about diagnosis and prognosis. RESULTS: Terminal patients attribute a pivotal role to GPs in different aspects of two types of continuity. Relational continuity: having an ongoing relationship with the same GP, of which important aspects are eg, keeping in touch after referral and feeling responsible for the patient. Informational continuity: use of information on past events and personal circumstances to provide individualised care, of which important aspects are eg, exchange of information between GPs, specialists and care facilities. Patients also identify barriers to continuity eg, lack of time and of GPs' initiative. CONCLUSIONS: At the end of life when physicians can no longer rely on biomedical models of diagnosis-therapy-cure, patients' perspectives are of utmost importance. This qualitative study made it possible to gain insights into terminal patients' perceptions of continuous primary end-of-life care. It clarifies the concept and identifies barriers to it.
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Joachim Cohen, Johan Bilsen, Susanne Fischer, Rurik Löfmark, Michael Norup, Agnes van der Heide, Guido Miccinesi, Luc Deliens (2007)  End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: does place of death make a difference?   J Epidemiol Community Health 61: 12. 1062-1068 Dec  
Abstract: OBJECTIVE: To examine differences in end-of-life decision-making in patients dying at home, in a hospital or in a care home. DESIGN: A death certificate study: certifying physicians from representative samples of death certificates, taken between June 2001 and February 2002, were sent questionnaires on the end-of-life decision-making preceding the patient's death. SETTING: Four European countries: Belgium (Flanders), Denmark, Sweden, and Switzerland (German-speaking part). MAIN OUTCOME MEASURES: The incidence of and communication in different end-of-life decisions: physician-assisted death, alleviation of pain/symptoms with a possible life-shortening effect, and non-treatment decisions. RESULTS: Response rates ranged from 59% in Belgium to 69% in Switzerland. The total number of deaths studied was 12 492. Among all non-sudden deaths the incidence of several end-of-life decisions varied by place of death. Physician-assisted death occurred relatively more often at home (0.3-5.1%); non-treatment decisions generally occurred more often in hospitals (22.4-41.3%), although they were also frequently taken in care homes in Belgium (26.0%) and Switzerland (43.1%). Continuous deep sedation, in particular without the administration of food and fluids, was more likely to occur in hospitals. At home, end-of-life decisions were usually more often discussed with patients. The incidence of discussion with other caregivers was generally relatively low at home compared with in hospitals or care homes. CONCLUSION: The results suggest the possibility that end-of-life decision-making is related to the care setting where people die. The study results seem to call for the development of good end-of-life care options and end-of-life communication guidelines in all settings.
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Joachim Cohen, Johan Bilsen, Guido Miccinesi, Rurik Löfmark, Julia Addington-Hall, Stein Kaasa, Michael Norup, Gerrit van der Wal, Luc Deliens (2007)  Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses.   BMC Public Health 7: 10  
Abstract: BACKGROUND: Systematic and reliable epidemiological information at population level, preferably cross-national, is needed for an adequate planning of (end-of-life) health care policies, e.g. concerning place of death, but is currently lacking. This study illustrates opportunities and weaknesses of death certificate data to provide such information on place of death and associated factors in nine European countries (seven entire countries and five regions). METHODS: We investigated the possibility and modality of all partners in this international comparative study (BE, DK, IT, NL, NO, SE, UK) to negotiate a dataset containing all deaths of one year with their national/regional administration of mortality statistics, and analysed the availability of information about place of death as well as a number of clinical, socio-demographic, residential and healthcare system factors. RESULTS: All countries negotiated a dataset, but rules, procedures, and cost price to get the data varied strongly between countries. In total, about 1.1 million deaths were included. For four of the nine countries not all desired categories for place of death were available. Most desired clinical and socio-demographic information was available, be it sometimes via linkages with other population databases. Healthcare system factors could be made available by linking existing healthcare statistics to the residence of the deceased. CONCLUSION: Death certificate data provide information on place of death and on possibly associated factors and confounders in all studied countries. Hence, death certificate data provide a unique opportunity for cross-national studying and monitoring of place of death. However, modifications of certain aspects of death certificate registration and rules of data-protection are perhaps required to make international monitoring of place of death more feasible and accurate.
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Lieve Van den Block, Viviane Van Casteren, Reginald Deschepper, Nathalie Bossuyt, Katrien Drieskens, Sabien Bauwens, Johan Bilsen, Luc Deliens (2007)  Nationwide monitoring of end-of-life care via the Sentinel Network of General Practitioners in Belgium: the research protocol of the SENTI-MELC study.   BMC Palliat Care 6: 10  
Abstract: ABSTRACT: 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/DESIGN: We 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. DISCUSSION: In 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.
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C De Gendt, J Bilsen, R Vander Stichele, M Lambert, N Van Den Noortgate, L Deliens (2007)  Do-not-resuscitate policy on acute geriatric wards in Flanders, Belgium   Tijdschr Gerontol Geriatr 38: 5. 246-254 Oct  
Abstract: This study describes the historical development and status of a do-not-resuscitate (DNR) policy on acute geriatric wards in Flanders, Belgium. In 2002 (the year Belgium voted a law on euthanasia), a structured mail questionnaire was sent to all head geriatricians of acute geriatric wards in Flanders (N=94). Respondents were asked about the existence, development, and implementation of the DNR policy (guidelines and order forms). The response was 76.6%. Development of DNR policy began in 1985, with a step-up in 1997 and 200l. In 2002, a DNR policy was available in 86.1% of geriatric wards, predominantly with institutional DNR guidelines and individual, patient-specific DNR order forms. The policy was initiated and developed predominantly from an institutional perspective by the hospital. The forms were not standardized and generally lacked room to document patient involvement in the decision making process. Implementation of institutional DNR guidelines and individual DNR order forms on geriatric wards in Flanders lagged behind that of other countries and was still incomplete in 2002. DNR policies varied in content and scope and were predominantly an expression of institutional defensive attitudes rather than a tool to promote patient involvement in DNR and other end-of-life decisions.
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Johan Bilsen, Michael Norup, Luc Deliens, Guido Miccinesi, Gerrit van der Wal, Rurik Löfmark, Karin Faisst, Agnes van der Heide (2006)  Drugs used to alleviate symptoms with life shortening as a possible side effect: end-of-life care in six European countries.   J Pain Symptom Manage 31: 2. 111-121 Feb  
Abstract: We investigated the drugs used in the alleviation of pain and symptoms (APS) with a possible life-shortening side effect in six European countries' end-of-life care. We sent mail questionnaires to physicians who signed a representative sample of death certificates in each country. APS with a possible life-shortening effect occurred from 19% of all deaths in Italy to 26% in Denmark. Physicians usually administered opioids (from 76% of APS cases in Italy to 96% in The Netherlands), but the type of opioids and administration practice differed markedly between countries. The doses of opioids given in the last 24 hours also varied significantly and were usually lower than 300 mg oral morphine equivalent (from 83% of cases in Belgium to 93% in Sweden). The highly variable results bring into question whether existing guidelines for pain relief were applied appropriately and to what extent unfounded concerns about the possible life-shortening effect of opioids resulted in less than optimal symptom management in end-of-life care.
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Guido Miccinesi, Judith A C Rietjens, Luc Deliens, Eugenio Paci, Georg Bosshard, Tore Nilstun, Michael Norup, Gerrit van der Wal (2006)  Continuous deep sedation: physicians' experiences in six European countries.   J Pain Symptom Manage 31: 2. 122-129 Feb  
Abstract: Continuous deep sedation (CDS) is sometimes used to treat refractory symptoms in terminally ill patients. The aim of this paper was to estimate the frequency and characteristics of CDS in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. Deaths reported to death registries were sampled and the reporting doctors received a mailed questionnaire about the medical decision making that preceded the death of the patient. The total number of deaths studied was 20,480. The response rate ranged between 44% (Italy) and 75% (The Netherlands). Of all deaths, CDS was applied in 2.5% in Denmark and up to 8.5% in Italy. Of all patients receiving CDS, 35% (Italy) and up to 64% (Denmark and The Netherlands) did not receive artificial nutrition or hydration. Patients who received CDS were more often male, younger than 80 years old, more likely to have had cancer, and died more often in a hospital compared to nonsudden deaths without CDS. The high variability of frequency and characteristics of CDS in the studied European countries points out the importance of medical education and scientific debate on this issue.
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Sander D Borgsteede, Corrie Graafland-Riedstra, Luc Deliens, Anneke L Francke, Jacques Thm van Eijk, Dick L Willems (2006)  Good end-of-life care according to patients and their GPs.   Br J Gen Pract 56: 522. 20-26 Jan  
Abstract: BACKGROUND: Most patients prefer to die at home, where a GP provides end-of-life care. A few previous studies have been directed at the GPs' values on good end-of-life care, yet no study combined values of patients and their own GP. AIM: To explore the aspects valued by both patients and GPs in end-of-life care at home, and to reflect upon the results in the context of future developments in primary care. DESIGN OF STUDY: Interviews with patients and their own GP. SETTING: Primary care in the Netherlands. METHOD: Qualitative, semi-structured interviews with 20 GPs and 30 of their patients with a life expectancy of less than 6 months, and cancer, heart failure or chronic obstructive pulmonary disease as underlying disease. RESULTS: Patients and GPs had comparable perceptions of good end-of-life care. Patients and GPs identified four core items that they valued in end-of-life care: availability of the GP for home visits and after office-hours, medical competence and cooperation with other professionals, attention and continuity of care. CONCLUSIONS: Future developments in the organisation of primary care such as the restriction of time for home visits, more part-time jobs and GP cooperatives responsible for care after office hours, may threaten valued aspects in end-of-life care.
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Tore Nilstun, Colleen Cartwright, Rurik Löfmark, Luc Deliens, Susanne Fischer, Guido Miccinesi, Michael Norup, Agnes Van Der Heide (2006)  Access to death certificates: what should research ethics committees require for approval?   Ann Epidemiol 16: 4. 281-284 Apr  
Abstract: PURPOSE: To present and discuss the reactions of research ethics committees (RECs) in a number of countries when asked for approval of a study requiring access to death certificates to identify the physicians signing the certificates and to send them a four-page questionnaire about medical decisions made at the patient's end-of-life that could possibly have hastened death. METHODS: A simple questionnaire were sent to the responsible national investigator in an international study (Australia, Belgium, Denmark, Italy, the Netherlands, Sweden, Switzerland) asking about the interactions between the national research group and the national/regional REC(s). RESULTS: Different laws or guidelines were used by the RECs. Denmark, the Netherlands, and Switzerland did not require an application to a REC. In Australia and Sweden, the RECs wanted changes in the research protocol, and one national research group had to refrain from publishing its results because the attrition rate became too high, probably due to the required changes in the protocol. RECOMMENDATIONS: Generally, similar demands from all RECs in relation to one project are strongly desirable. In epidemiological research, in which voluntary completion of an anonymous questionnaire demonstrates consent, additional prior informed consent about being approached should not be required.
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Joachim Cohen, Isabelle Marcoux, Johan Bilsen, Patrick Deboosere, Gerrit van der Wal, Luc Deliens (2006)  European public acceptance of euthanasia: socio-demographic and cultural factors associated with the acceptance of euthanasia in 33 European countries.   Soc Sci Med 63: 3. 743-756 Aug  
Abstract: In many European countries, the last decade has been marked by an increasing debate about the acceptability and regulation of euthanasia and other end-of-life decisions in medical practice. Growing public sensibility to a 'right to die' for terminally ill patients has been one of the main constituents of these debates. Within this context, we sought to describe and compare acceptance of euthanasia among the general public in 33 European countries. We used the European Values Study data of 1999-2000 with a total of 41125 respondents (63% response rate) in 33 European countries. The main outcome measure concerned the acceptance of euthanasia (defined as 'terminating the life of the incurably sick', rated on a scale from 1 to 10). Results showed that the acceptance of euthanasia tended to be high in some countries (e.g. the Netherlands, Denmark, France, Sweden), while a markedly low acceptance was found in others (e.g. Romania, Malta and Turkey). A multivariate ordinal regression showed that weaker religious belief was the most important factor associated with a higher acceptance; however, there were also socio-demographic differences: younger cohorts, people from non-manual social classes, and people with a higher educational level tended to have a higher acceptance of euthanasia. While religious belief, socio-demographic factors, and also moral values (i.e. the belief in the right to self-determination) could largely explain the differences between countries, our findings suggest that perceptions regarding euthanasia are probably also influenced by national traditions and history (e.g. Germany). Thus, we demonstrated clear cross-national differences with regard to the acceptance of euthanasia, which can serve as an important basis for further debate and research in the specific countries.
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Veerle Provoost, Filip Cools, Johan Bilsen, José Ramet, Peter Deconinck, Robert Vander Stichele, Anne Vande Velde, Inge Van Herreweghe, Freddy Mortier, Yvan Vandenplas, Luc Deliens (2006)  The use of drugs with a life-shortening effect in end-of-life care in neonates and infants.   Intensive Care Med 32: 1. 133-139 Jan  
Abstract: OBJECTIVE: The purpose was to describe the use of drugs with a possible or certain life-shortening effect in end-of-life care in infants and to evaluate the possibly lethal effect. DESIGN: For 292/298 deaths of live born infants (<1 year), in a 1-year period (between 1 August 1999 and 31 July 2000) in Flanders, Belgium, the attending physician could be identified and was sent an anonymous questionnaire. The questionnaires relating to deaths directly preceded by the administration of drugs were reviewed by a multi-disciplinary panel. RESULTS: The response rate was 86.6% (253/292). In 57 cases (22.5%), drugs were administered directly before death. In 17/57 cases, the physician explicitly intended to hasten death. In 16/17 cases information about the drug(s) was available: opioids were administered in 14, a muscle relaxant in 5 and potassium chloride in 3 cases. In 13 cases where the lethal effect could be evaluated, the panel judged that the drugs were effective in hastening death in 10 cases. In most cases the estimated life-shortening was <24 h. In 40/57 cases the physician administered drugs to alleviate pain and/or symptoms, taking into account a possible life-shortening effect without explicitly intending it. Opioids were administered in all 30 cases where information about the drug(s) was supplied. In 13 cases the lethal effect could be evaluated, and in 6 cases the panel judged that the drugs had hastened death. CONCLUSIONS: When life-shortening was explicitly intended, (dosages of) drugs were likely to be lethal. Drugs administered also clearly hastened death in some cases where life-shortening was not explicitly intended.
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Joachim Cohen, Johan Bilsen, Peter Hooft, Patrick Deboosere, Gerrit van der Wal, Luc Deliens (2006)  Dying at home or in an institution using death certificates to explore the factors associated with place of death.   Health Policy 78: 2-3. 319-329 Oct  
Abstract: INTRODUCTION: The knowledge of determinants of place of death is important for public health policy aimed at improving the quality of end-of-life care. METHODS: We investigated the influence of clinical, socio-demographic, residential and health care system factors on the place of death, using data from all 55,759 deaths in 2001 in Flanders (Belgium), gathered via official death certificates and data from anonymously linked health care statistics. A multivariate logistic regression was used to examine the associated factors (home versus hospital as dependent categories). RESULTS: Of all deaths in Flanders, 53.7% took place in hospital, 24.3% at home and 19.8% in a care home. The probability of home deaths varied by region, by rural or urban residence and by the hospital bed availability in the region and dying at home was less likely among those suffering from certain non-malignant chronic diseases, the less educated and those living alone. CONCLUSION: Although most people wish to die at home, most deaths in Flanders (Belgium) in 2001 did not take place there. The clinical, socio-demographic and residential factors found to be associated with the place of death could serve as focal points for a policy to facilitate dying in the place of choice, including at home.
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Reginald Deschepper, Robert Vander Stichele, Jan L Bernheim, Els De Keyser, Greta Van Der Kelen, Freddy Mortier, Luc Deliens (2006)  Communication on end-of-life decisions with patients wishing to die at home: the making of a guideline for GPs in Flanders, Belgium.   Br J Gen Pract 56: 522. 14-19 Jan  
Abstract: BACKGROUND: Communication with patients on end-of-life decisions is a delicate topic for which there is little guidance.AIM: To describe the development of a guideline for GPs on end-of-life communication with patients who wish to die at home, in a context where patient autonomy and euthanasia are legally regulated. DESIGN OF STUDY: A three-phase process (generation, elaboration and validation). In the generation phase, literature findings were structured and then prioritised in a focus group with GPs of a palliative care consultation network. In the elaboration phase, qualitative data on patients' and caregivers' perspectives were gathered through a focus group with next-of-kin, in-depth interviews with terminal patients, and four quality circle sessions with representatives of all constituencies. In the validation phase, the acceptability of the draft guideline was reviewed in bipolar focus groups (GPs-nurses and GPs-specialists). Finally, comments were solicited from experts by mail. SETTING: Primary home care in Belgium. SUBJECTS: Participants in this study were terminal patients (n = 17), next-of-kin of terminal patients (n = 17), GPs (n = 25), specialists (n = 3), nurses (n = 8), other caregivers (n = 2) and experts (n = 41). RESULTS: Caregivers and patients expressed a need for a comprehensive guideline on communication in end-of-life decisions. Four major communication themes were prioritised: truth telling; exploration of the patient's wishes regarding the end of life; dealing with disproportionate interventions; and dealing with requests for euthanasia in the terminal phase of life. Additional themes required special attention in the guideline: continuity of care by the GP; communication on foregoing food and fluid; and technical aspects of euthanasia. CONCLUSION: It was feasible to develop a guideline by combining the three cornerstones of evidence-based medicine: literature search, patient values and professional experience.
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V Provoost, F Cools, F Mortier, J Bilsen, J Ramet, Y Vandenplas, L Deliens (2006)  Medical end-of-life decisions in neonates and infants in Flanders, Belgium; 1999/2000   Ned Tijdschr Geneeskd 150: 7. 377-382 Feb  
Abstract: OBJECTIVE: To determine the number of medical end-of-life decisions in critically ill neonates and infants in Flanders, Belgium. DESIGN: Retrospective. METHOD: A death certificate study on all deaths of neonates and infants in the whole of Flanders was carried out over a i2-month period (August 1999-July 2000). An anonymous questionnaire was sent by mail to the attending physician of each of the 292 children who died under the age of 1 year. All physicians who had attended at least one death during the study period were included in an attitude study. RESULTS: A total of 253 (87%) of the 292 questionnaires were returned and 121 (69%) of the 175 physicians involved completed the questions on attitude. An end-of-life decision had been possible in 194 (77%; 95% CI: 70.4-82.4) of the 253 deaths for which questionnaires were returned, and such a decision was actually made in 143 cases (57%; 95% CI: 48.9-64.0). Lethal drugs were administered in 15 of 117 early neonatal deaths and in 2 of 77 later deaths (13% versus 3%; p = 0.018). The attitude study showed that 69 (58%; 95% CI: 48.1-66.5) of the 120 physicians supported a change in the law making life-termination possible in some well-defined cases. CONCLUSION: The death of neonates and infants was commonly preceded by an end-of-life decision in Flanders. The type of decision varied substantially according to the age of the child. The majority of physicians involved, favoured legalization of the use of lethal drugs in some well-defined cases.
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Susanne Fischer, Guido Miccinesi, Rainer Hornung, Georg Bosshard, Luc Deliens, Agnes van der Heide, Tore Nilstun, Michael Norup, Bregje D Onwuteaka-Philipsen (2006)  Responders and non-responders in a study on medical end-of-life decisions in Denmark, the Netherlands, Sweden and Switzerland.   Soz Praventivmed 51: 1. 24-33  
Abstract: OBJECTIVES: To determine the direction and magnitude of participation bias in end-of-life research. METHODS: Within the framework of a European survey on medical end-of-life decisions, a non-response study was conducted among physicians in Denmark, the Netherlands, Sweden and Switzerland. People were asked about their attitudes and experiences in the area of medial end-of-life decision. The response rates ranged from 12.8% (Netherlands) to 39.4% (Switzerland). The responders (n = 5403) and the non-responders (n = 866) were compared regarding socio-demographic characteristics, experiences with terminal patients and agreement with attitudes towards "end-of-life decisions". The reasons for non-participation to the study were analyzed. RESULTS: Non-response did not cause socio-demographic distortion, but non-responders had statistically significantly fewer terminal patients than responders. Agreement rates were statistically significantly higher among responders than among non-responders for euthanasia, non-treatment decision and life-preserving statements. Neutral answers were statistically significantly more frequent among non-responders than among responders for life-preserving and euthanasia statements. The most commonly mentioned reason for non-participation was "lack of time". CONCLUSION: Non-participation does cause an overestimation of proponents of life-shortening, as well as of life-preserving end-of-life decisions. Non-responders more often have ambiguous attitudes towards end-of-life decisions than responders.
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Hella E Brandt, Marcel E Ooms, Luc Deliens, Gerrit van der Wal, Miel W Ribbe (2006)  The last two days of life of nursing home patients--a nationwide study on causes of death and burdensome symptoms in The Netherlands.   Palliat Med 20: 5. 533-540 Jul  
Abstract: OBJECTIVES: The aim of this study was to identify the direct causes of death and to evaluate the presence of burdensome symptoms in the last two days of life of terminally ill nursing home (NH) patients. METHODS: Prospective study of patients with a maximum life-expectancy of six weeks in 16 nursing homes representative for The Netherlands (n = 463). Symptoms were measured after death in conscious patients with the Edmonton Symptom Assessment Scale (ESAS) and the Resident Assessment Instrument Minimum Data-Set Palliative Care (RAI MDS-PC draft 1.8). Direct causes of death were assessed in all patients. RESULTS: Most patients died from pneumonia, renal failure or dehydration. Loss of consciousness was common. The prevalence of burdensome symptom(s) at 48 and 24 hours before death was 51.3 and 28.4%, respectively. CONCLUSION: In practice, it appears that, for many patients, the last days of life are spent unconscious or conscious with one or more burdensome symptom(s), which suggests the potential for improvement of symptom management.
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Hella E Brandt, Marcel E Ooms, Miel W Ribbe, Gerrit van der Wal, Luc Deliens (2006)  Predicted survival vs. actual survival in terminally ill noncancer patients in Dutch nursing homes.   J Pain Symptom Manage 32: 6. 560-566 Dec  
Abstract: Studies on the prediction of survival have mainly focused on hospital and hospice patients suffering from cancer. The aim of this study was to describe the predicted vs. the actual survival in terminally ill, mainly noncancer patients in Dutch nursing homes (NHs). A prospective cohort study was conducted in 16 NHs representative for The Netherlands. A total of 515 NH patients with a maximum life expectancy of 6 weeks, as assessed by an NH physician, were included. NH physicians were accurate in more than 90% of their prognoses for terminally ill--mainly noncancer--NH patients, when death occurred within 7 days. For a longer period of time, their predictions became inaccurate. In the category of patients who were expected to die within 8-21 days, predictions were accurate in 16.0%, and in the category of patients expected to die within 22-42 days, this was 13.0%. Predictions in these categories were mainly optimistic (patient died earlier) in 68.6% and 52.2%, respectively. The findings of this study suggest that accurate prediction of survival of (mainly) noncancer patients in NHs is only possible when death is imminent and seems to be dependent on an intimate knowledge of patients. Prognostication over a longer period of time tends to be less accurate, and, therefore, continues to be a challenging task for NH physicians.
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Sander D Borgsteede, Luc Deliens, Anneke L Francke, Wim A B Stalman, Dick L Willems, Jacques T M van Eijk, Gerrit van der Wal (2006)  Defining the patient population: one of the problems for palliative care research.   Palliat Med 20: 2. 63-68 Mar  
Abstract: There is a lack of clear definition and clear inclusion criteria in palliative care research. The aim of this study was to describe consequences of three inclusion criteria in the build up of different study populations, studied in terms of size, number of doctor-patient contacts and demographic characteristics. General practitioners received a questionnaire for all patients who died during the second Dutch National Survey of General Practice (n=2194), to determine whether (1) patients received non-curative treatment; (2) patients received palliative care; and (3) death was expected (total response rate =73%). The criterion 'death was expected' included most patients (62%) followed by 'palliative care' (46%) and 'noncurative treatment' (39%). Similarity between the definition-based populations was fair to moderate. More 'palliative care' and 'death was expected' in patients who had cancer than 'non-curative treatment' patients. The conclusions show substantial differences in populations according to the different inclusion criteria used to select them. Future research in palliative care should acknowledge the limitations of using certain inclusion criteria and explore potential bias.
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Veerle Provoost, Filip Cools, Peter Deconinck, José Ramet, Reginald Deschepper, Johan Bilsen, Freddy Mortier, Yvan Vandenplas, Luc Deliens (2006)  Consultation of parents in actual end-of-life decision-making in neonates and infants.   Eur J Pediatr 165: 12. 859-866 Dec  
Abstract: The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.
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Annemieke Kuin, Luc Deliens, Lia van Zuylen, Annemie M Courtens, Myrra J F J Vernooij-Dassen, Barbara van der Linden, Gerrit van der Wal (2006)  Spiritual issues in palliative care consultations in the Netherlands.   Palliat Med 20: 6. 585-592 Sep  
Abstract: INTRODUCTION: In the Netherlands, healthcare professionals are able to consult Palliative Care Consultation (PCC) teams about individual patients, for information, support and advice. This study aims to understand which spiritual issues are discussed in these consultations and to determine which factors influence whether they are raised or not. METHODS: The national register of the consultations of the PCC teams was analysed for a two-year period. RESULTS: Spiritual issues played a role in 8.4% of palliative care consultations, of which 4.1% were by phone and 18.3% were bedside consultations. Often spiritual issues were raised by the consultant during the exploration of the request from the caregiver; the discipline of the consultant rather than the discipline of the requesting professional or the patient characteristics determined whether or not such issues were raised. The main support given by the consultant was in coaching the professional caregiver on how to address these issues. DISCUSSION: This study demonstrates the important role of PCC team consultants in exploring and identifying the spiritual needs of patients about whom they are consulted. Although continued education in spiritual care for palliative care professionals is essential, PCC team consultants will play an important role in drawing the attention of healthcare professionals to the need to recognize and address the spiritual needs of their patients.
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Johannes J M van Delden, Rurik Löfmark, Luc Deliens, Georg Bosshard, Michael Norup, Riccardo Cecioni, Agnes van der Heide (2006)  Do-not-resuscitate decisions in six European countries.   Crit Care Med 34: 6. 1686-1690 Jun  
Abstract: OBJECTIVE: To study and compare the incidence and main background characteristics of do-not-resuscitate (DNR) decision making in six European countries. DESIGN: Retrospective. SETTING: We studied DNR decisions simultaneously in Belgium (Flanders), Denmark, Italy (four regions), the Netherlands, Sweden, and Switzerland (German-speaking part). In each country, random samples of death certificates were drawn from death registries to which all deaths are reported. The deaths occurred between June 2001 and February 2002. PARTICIPANTS: Reporting physicians received a mailed questionnaire about the medical decision making that had preceded death. The response percentage was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. The total number of deaths studied was 20,480. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Measurements were frequency of DNR decisions, both individual and institutional, and patient involvement. Before death, an individual DNR decision was made in about 50-60% of all nonsudden deaths (Switzerland 73%, Italy 16%). The frequency of institutional decisions was highest in Sweden (22%) and Italy (17%) and lowest in Belgium (5%). DNR decisions are discussed with competent patients in 10-84% of cases. In the Netherlands patient involvement rose from 53% in 1990 to 84% in 2001. In case of incompetent patients, physicians bypassed relatives in 5-37% of cases. CONCLUSIONS: Except in Italy, DNR decisions are a common phenomenon in these six countries. Most of these decisions are individual, but institutional decisions occur frequently as well. In most countries, the involvement of patients in DNR decision making can be improved.
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Lieve Van den Block, Johan Bilsen, Reginald Deschepper, Greta Van der Kelen, Jan L Bernheim, Luc Deliens (2006)  End-of-life decisions among cancer patients compared with noncancer patients in Flanders, Belgium.   J Clin Oncol 24: 18. 2842-2848 Jun  
Abstract: PURPOSE: Incidence studies reported more end-of-life decisions with possible/certain life-shortening effect (ELDs) among cancer patients than among noncancer patients. These studies did not correct for the different proportions of sudden/unexpected deaths of cancer versus noncancer patients, which could have biased the results. We investigated incidences and characteristics of ELDs among nonsudden cancer and noncancer deaths. METHODS: We sampled 5,005 certificates of all deaths in 2001 (Flanders, Belgium) stratified for ELD likelihood. Questionnaires were mailed to the certifying physicians. Data were corrected for stratification and nonresponse. RESULTS: The response rate was 59%. Among 2,128 nonsudden deaths included, ELDs occurred in 74% of cancer versus 50% of noncancer patients (P < .001). Symptom alleviation with possible life-shortening effect occurred more frequently among cancer patients (P < .001); nontreatment decisions occurred less frequently (P < .001). The higher incidence of lethal drug use among cancer patients did not hold after correcting for patient age. Half of the cancer patients who died after an ELD were incompetent to make decisions compared with 76% of noncancer patients (P < .001). Discussion with patients and relatives was similar in both groups. In one fifth of all patients the ELD was not discussed. CONCLUSION: ELDs are common in nonsudden deaths. The different incidences for symptom alleviation with possible life-shortening effect and nontreatment decisions among cancer versus noncancer patients may be related to differences in dying trajectories and in timely recognition of patient needs. The end-of-life decision-making process is similar for both groups: consultation of patients and relatives can be improved in a significant minority of patients.
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Bregje D Onwuteaka-Philipsen, Susanne Fisher, Colleen Cartwright, Luc Deliens, Guido Miccinesi, Michael Norup, Tore Nilstun, Agnes van der Heide, Gerrit van der Wal (2006)  End-of-life decision making in Europe and Australia: a physician survey.   Arch Intern Med 166: 8. 921-929 Apr  
Abstract: BACKGROUND: The frequencies with which physicians make different medical end-of-life decisions (ELDs) may differ between countries, but comparison between countries has been difficult owing to the use of dissimilar research methods. METHODS: A written questionnaire was sent to a random sample of physicians from 9 specialties in 6 European countries and Australia to investigate possible differences in the frequencies of physicians' willingness to perform ELDs and to identify predicting factors. Response rates ranged from 39% to 68% (N = 10 139). Using hypothetical cases, physicians were asked whether they would (probably) make each of 4 ELDs. RESULTS: In all the countries, 75% to 99% of physicians would withhold chemotherapy or intensify symptom treatment at the request of a patient with terminal cancer. In most cases, more than half of all physicians would also be willing to deeply sedate such a patient until death. However, there was generally less willingness to administer drugs with the explicit intention of hastening death at the request of the patient. The most important predictor of ELDs was a request from a patient with decisional capacity (odds ratio, 2.1-140.0). Shorter patient life expectancy and uncontrollable pain were weaker predictors but were more stable across countries and across the various ELDs (odds ratios, 1.1-2.4 and 0.9-2.4, respectively). CONCLUSION: Cultural and legal factors seem to influence the frequencies of different ELDs and the strength of their determinants across countries, but they do not change the essence of decision making.
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Joachim Cohen, Isabelle Marcoux, Johan Bilsen, Patrick Deboosere, Gerrit van der Wal, Luc Deliens (2006)  Trends in acceptance of euthanasia among the general public in 12 European countries (1981-1999).   Eur J Public Health 16: 6. 663-669 Dec  
Abstract: BACKGROUND: We wanted to examine how the acceptance of euthanasia among the general public in Western Europe has changed in the last decades, and we wanted to look for possible explanations. METHODS: We analysed data from the European Values Surveys, held in 1981, 1990, and 1999-2000 in 12 West European countries. In each country, representative samples of the general public were interviewed using the same structured questionnaire in all countries. Euthanasia was explained in the questionnaires as 'terminating the life of the incurably sick'. RESULTS: A total of 46 199 respondents participated in the surveys. A significant increase in acceptance of euthanasia could be observed in all countries except (West) Germany. While the average increase in euthanasia acceptance was 22%, the increase was particularly obvious in Belgium, Italy, Spain, and Sweden. Although changes in several characteristics of respondents, such as decrease in religious beliefs, rising belief in the right to self-determination, and (to a lesser extent) rise in levels of education, were associated with growing acceptance of euthanasia, they could only partly explain the increase of euthanasia acceptance over the years. CONCLUSIONS: An increase of euthanasia acceptance among the general public took place over the last two decades in almost all West European countries, possibly indicating a growing support for personal autonomy regarding medical end-of-life decisions. If this trend continues, it is likely to increase the public and political debate about the (legal) regulation of euthanasia under certain conditions of careful medical practice in several West European countries.
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2005
 
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Hella E Brandt, Luc Deliens, Marcel E Ooms, Jenny T van der Steen, Gerrit van der Wal, Miel W Ribbe (2005)  Symptoms, signs, problems, and diseases of terminally ill nursing home patients: a nationwide observational study in the Netherlands.   Arch Intern Med 165: 3. 314-320 Feb  
Abstract: BACKGROUND: Nursing homes (NHs) are less well studied than hospices or hospitals as a setting for terminal care. For more targeted palliative care, more information is needed about the patient characteristics, symptoms, direct causes and underlying diseases, and incidence of terminally ill NH patients. These aspects are examined in this study. METHODS: Prospective observational cohort study in 16 NHs representative of the Netherlands. All long-term care patients assessed by an NH physician to have a life expectancy of 6 weeks or less were enrolled in our study. RESULTS: The terminal disease phase was marked with symptoms of low fluid and food intake, general weakness, and respiratory problems or dyspnea. Direct causes of these conditions were diseases of the respiratory system (mainly pneumonia) and general disorders (eg, cachexia). The 2 main underlying diseases of the terminal phase were mental and behavioral disorders and diseases of the circulatory system. Cancer was the underlying disease in only 12% of the patients. Patients with cancer showed a different pattern of symptoms than those without cancer. Per 100 beds per year, 34 NH patients entered the terminal phase. Most patients (82.9%) died within 7 days of inclusion. CONCLUSIONS: For patients without cancer in Dutch NHs, the terminal disease phase is difficult to predict, and once diagnosed, patient survival time is short. A better identification of the symptom burden might improve the prognostication of life expectancy in elderly patients.
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Cindy De Gendt, Johan Bilsen, Robert Vander Stichele, Margareta Lambert, NeleVan Den Noortgate, Luc Deliens (2005)  Do-not-resuscitate policy on acute geriatric wards in Flanders, Belgium.   J Am Geriatr Soc 53: 12. 2221-2226 Dec  
Abstract: OBJECTIVES: To describe the historical development and status of a do-not-resuscitate (DNR) policy on acute geriatric wards in Flanders, Belgium, and to compare it with the international situation. DESIGN: Structured mail questionnaires. SETTING: All 94 acute geriatric wards in hospitals in Flanders in 2002 (the year Belgium voted a law on euthanasia). PARTICIPANTS: Head geriatricians. MEASUREMENTS: A questionnaire was mailed about the existence, development, and implementation of the DNR policy (guidelines and order forms), with a request to return copies of existing DNR guidelines and DNR order forms. RESULTS: The response was 76.6%, with hospital characteristics not significantly different for responders and nonresponders. Development of DNR policy began in 1985, with a step-up in 1997 and 2001. In 2002, a DNR policy was available in 86.1% of geriatric wards, predominantly with institutional DNR guidelines and individual, patient-specific DNR order forms. Geriatric wards in private hospitals implemented their policy later (P=.01) and more often had order forms (P=.04) than those in public hospitals. The policy was initiated and developed predominantly from an institutional perspective by the hospital. The forms were not standardized and generally lacked room to document patient involvement in the decision making process. CONCLUSION: Implementation of institutional DNR guidelines and individual DNR order forms on geriatric wards in Flanders lagged behind that of other countries and was still incomplete in 2002. DNR policies varied in content and scope and were predominantly an expression of institutional defensive attitudes rather than a tool to promote patient involvement in DNR and other end-of-life decisions.
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Veerle Provoost, Filip Cools, Freddy Mortier, Johan Bilsen, José Ramet, Yvan Vandenplas, Luc Deliens (2005)  Medical end-of-life decisions in neonates and infants in Flanders.   Lancet 365: 9467. 1315-1320 Apr  
Abstract: BACKGROUND: Paediatricians are increasingly confronted with end-of-life decisions in critically ill neonates and infants. Little is known about the frequency and characteristics of end-of-life decisions in this population, nor about the relation with clinical and patients' characteristics. METHODS: A death-certificate study was done for all deaths of neonates and infants in the whole of Flanders over a 12 month period (August, 1999, to July, 2000). We sent an anonymous questionnaire by mail to the attending physician for each of the 292 children who died under the age of 1 year. Information on patients was obtained from national registers. An attitude study was done for all physicians who attended at least one death during the study period. FINDINGS: 253 (87%) of the 292 questionnaires were returned, and 121 (69%) of the 175 physicians involved completed the attitude questions. An end-of-life decision was possible in 194 (77%; 95% CI 70.4-82.4) of the 253 deaths studied, and such a decision was made in 143 cases (57%; 48.9-64.0). Lethal drugs were administered in 15 cases among 117 early neonatal deaths and in two cases among 77 later deaths (13%vs 3%; p=0.018). The attitude study showed that 95 (79%; 70.1-85.5) of the 121 physicians thought that their professional duty sometimes includes the prevention of unnecessary suffering by hastening death and 69 (58%; 48.1-66.5) of 120 supported legalisation of life termination in some cases. INTERPRETATION: Death of neonates and infants is commonly preceded by an end-of-life decision. The type of decision varied substantially according to the age of the child. Most physicians favour legalisation of the use of lethal drugs in some cases.
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Johan Bilsen, Marc Bauwens, Jan Bernheim, Robert Vander Stichele, Luc Deliens (2005)  Physician-assisted death: attitudes and practices of community pharmacists in East Flanders, Belgium.   Palliat Med 19: 2. 151-157 Mar  
Abstract: This study investigates attitudes and practices of community pharmacists with respect to physician-assisted death. Between 15 February and 15 April 2002, we sent anonymous mail questionnaires to 660 community pharmacists in the eastern province of Flanders, Belgium. The response rate was 54% (n = 359). Most of the pharmacists who responded felt that patients have the right to end their own life (73%), and that under certain conditions physicians may assist the patient in dying (euthanasia: 84%; physician-assisted suicide: 61%). Under the prevailing restrictive legislation, a quarter of the pharmacists were willing to dispense lethal drugs for euthanasia versus 86% if it were legalized, but only after being well informed by the physician. The respondents-favour guidelines for pharmacists drafted by their own professional organizations (95%), and enforced by legislation (90%) to ensure careful end-of-life practice. Over the last two years, 7.3% of the responding pharmacists have received a medical prescription for lethal drugs and 6.4% have actually dispensed them. So we can conclude that community pharmacists in East Flanders were not adverse to physician-assisted death, but their cooperation in dispensing lethal drugs was conditional on clinical information about the specific case and on protection by laws and professional guidelines.
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Michael A Echteld, Luc Deliens, Marcel E Ooms, Miel W Ribbe, Gerrit van der Wal (2005)  Quality of life change and response shift in patients admitted to palliative care units: a pilot study.   Palliat Med 19: 5. 381-388 Jul  
Abstract: This pilot study was carried out to determine to what extent patients admitted to palliative care units (PCUs) in The Netherlands maintained good levels of individual quality of life (QoL), and to what extent response shift - a measure of adaptation - influenced QoL at the end of life. Two components of response shift were measured: reconceptualization (exchanging important areas of life) and value change (changing the perceived importance of important areas of life). Twenty patients admitted to PCUs were interviewed at one week, three weeks, and five weeks after admission. Results show that individual QoL was high and remained stable over the three measurement points. The individual QoL of patients who did not reconceptualize or did not change values was higher than the individual QoL of patients who did. The current pilot data need to be corroborated with data from additional respondents.
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Hella E Brandt, Luc Deliens, Jenny T van der Steen, Marcel E Ooms, Miel W Ribbe, Gerrit van der Wal (2005)  The last days of life of nursing home patients with and without dementia assessed with the palliative care outcome scale.   Palliat Med 19: 4. 334-342 Jun  
Abstract: The aim of this study was to assess the Palliative care Outcome Scale (POS) for terminally ill nursing home (NH) patients in the Netherlands. METHODS: A prospective observational study of patients with a life-expectancy of six weeks or less in 16 Dutch NHs. NH staff rated the patient characteristics and measured palliative care with the POS, including items on physical, psychosocial, informational, spiritual and practical aspects. RESULTS: POS nonscores (not applicable; unknown) were mainly found in the psychosocial and spiritual domains, particularly in patients with dementia. Mean scores for non-demented patients and patients with dementia were favourable for the majority of the POS items. CONCLUSION: According to the NH staff, fairly good quality care was provided, but the psychosocial and spiritual aspects of care need to be addressed more in the last days of the dying NH patient's life. The results indicate that the POS is an appropriate instrument to assess not only cancer patients, but also non-cancer and (moderately) severely demented patients.
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2004
 
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R H Vander Stichele, J J R Bilsen, J L Bernheim, F Mortier, L Deliens (2004)  Drugs used for euthanasia in Flanders, Belgium.   Pharmacoepidemiol Drug Saf 13: 2. 89-95 Feb  
Abstract: PURPOSE: Our aim was to describe and assess the medicinal products and doses used for euthanasia in a series of cases, identified within an epidemiological death certificate study in Belgium, where euthanasia was until recently legally forbidden and where guidelines for euthanasia are not available. METHODS: In a random sample of the deaths in 1998 in Belgium, the physicians who signed the death certificates were identified and sent an anonymous mail questionnaire. The questionnaires of the deaths classified as euthanasia cases were reviewed by a multi-disciplinary panel. RESULTS: A total of 22 among 1925 questionnaires pertained to voluntary euthanasia. In 17 cases, detailed information on the euthanatics (medicinal substances used for euthanasia) used was provided. Opioids were used in 13 cases (in 7 as a single drug). Time between last dose and expiry ranged from 4 to 900 min. The panel judged that only in 4 cases effective euthanatics were used. CONCLUSIONS: In the end-of-life decision cases perceived by Belgian physicians as euthanasia, pharmacological practices were disparate, although dominated by the use of morphine, in the very late phase of dying, in doses which were unlikely to be lethal. Most physicians clandestinely engaging in euthanasia in Belgium seemed unaware of procedures for guaranteeing a quick, mild and certain death. Information on the pharmacological aspects of euthanasia should be included in the medical curriculum and continuing medical education, at least in countries with a legal framework permitting euthanasia under specified conditions.
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Annemieke Kuin, Annemie M Courtens, Luc Deliens, Myrra J F J Vernooij-Dassen, Lia van Zuylen, Barbara van der Linden, Gerrit van der Wal (2004)  Palliative care consultation in The Netherlands: a nationwide evaluation study.   J Pain Symptom Manage 27: 1. 53-60 Jan  
Abstract: Palliative care in The Netherlands is mainly provided by generalist professionals who are part of the regular health care system. In order to provide good quality palliative care, they need options for training and consultation. Therefore, Palliative Care Consultation (PCC) teams were established, which inform, support, and advise professional caregivers involved with patients in palliative care without taking over responsibility. This study is the first nationwide study on PCC teams. Investigated was the nature and effect of consultations by registration and evaluation of consultations given by 19 PCC teams during a one-year period. Sixty-one percent of the requesting caregivers were primary care professionals and the problems discussed covered the entire field of palliative care, although physical problems played a dominant role. Although the patient was often not seen by the consultant, the consultant appeared to be able to identify more problems than initially discussed by the requesting professional. The types of problems discussed were hardly related to patient characteristics but more related to the discipline of the professional caregiver. According to the requesting professionals, consultation was helpful and contributed to improving the quality of palliative care.
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V Provoost, L Deliens, F Cools, P G Deconinck, J Ramet, F Mortier, Y Vandenplas (2004)  A classification of end-of-life decisions in neonates and infants.   Acta Paediatr 93: 3. 301-305 Mar  
Abstract: AIM: Valid and reliable data are needed to gain insight into the decisions of paediatricians concerning the end of life of newborns and infants. Such data could throw light on the poorly documented aspects of medical practice regarding these end-of-life decisions (ELDs). In this article a classification of ELDs is developed. METHODS: The classification is developed from knowledge generated from large-scale epidemiological studies on ELDs. RESULTS: This classification sets out from considerations of the various possible medical end-of-life procedures for newborns and infants and from important ethical aspects of the decision-making process. From both ethical and legal viewpoints the life-shortening intention of the physician is a significant factor for the qualification of ELDs. Furthermore, the consultation of the parents is an important factor in absence of the possibility of the patient's self-determination. CONCLUSION: This classification has been devised with the aim of making reliable and valid descriptions of both the incidence and nature of ELDs in this specific population of newborns and infants.
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Michael A Echteld, Luc Deliens, Marcel E Ooms, Robbert F van Bokhoven, Miel W Ribbe, Gerrit van der Wal (2004)  Facilitators and barriers in implementing units for short term terminal care in nursing homes   Tijdschr Gerontol Geriatr 35: 1. 21-27 Feb  
Abstract: Minimal care requirements were drafted for units for short-term palliative care for terminally ill patients in nursing homes in The Netherlands. The requirements were evaluated by (a) determining to what extent ten units were able to meet these requirements and (b) which facilitators and barriers influenced the implementation of the units. Staff members of the ten units were interviewed using a semi-structured interview protocol six months after the units were established. The results show that on average 69 percent of the requirements were met. Requirements for expertise development were best met (77 percent), and requirements for personnel and team were met least (58 percent). Facilitators for meeting the requirements included development of new housing or renovation, being part of a care provider network, and onetime subsidies. Barriers included lack of funds and shortage of staff. Further development of the requirements based on the results of this study by a committee of experts was advised.
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Johan J R Bilsen, Robert H Vander Stichele, Freddy Mortier, Luc Deliens (2004)  Involvement of nurses in physician-assisted dying.   J Adv Nurs 47: 6. 583-591 Sep  
Abstract: BACKGROUND: Death in modern societies is often preceded by medical end-of-life decisions. Empirical research on these end-of-life decisions focuses predominantly on the physicians' role. Little is known about the role of other health care workers, especially that of nurses. AIM: This paper reports the findings of a study that investigated how often nurses are consulted by physicians in the decision-making process preceding end-of-life decisions and how often nurses participate in administering lethal drugs in end-of-life decisions. METHOD: Data were collected within a nationwide cross-sectional retrospective death certificate study in Flanders, the Dutch-speaking part of Belgium. We selected 3999 deaths, a 20% random sample of all those occurring during the first 4 months of 1998. Anonymous questionnaires were mailed to the physicians who signed the death certificates. Several questions concerned the involvement of nurses in end-of-life decisions. RESULTS: We received 1925 valid questionnaires. For all reported end-of-life decisions (39.3% of all deaths in Flanders), physicians provided information about the involvement of nurses. Physicians consulted at least one nurse in 52% of end-of-life decisions cases occurring in institutions, compared with 21.4% of such cases at home. Nurses administered lethal drugs in 58.8% of euthanasia cases occurring in institutions and in 17.2% at home. For cases in which life was ended without the patient's explicit request because, predominantly, they were too ill to do so, these percentages were respectively 82.7% and 25.2%. In institutions, nurses mostly administered drugs without the attendance of a physician who had prescribed the drugs. CONCLUSIONS: Nurses in Belgium are largely involved in administering lethal drugs in end-of-life decisions, while their participation in the decision-making process is rather limited. To guarantee prudent practice in end-of-life decisions, we need clear guidelines, professionally supported and legally controlled, for the assignment of duties between physicians and nurses regarding the administration of lethal drugs to reflect current working practice. In addition, we need appropriate binding standards governing mutual communication about all end-of-life decisions.
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Michael A Echteld, Luc Deliens, Gerrit Van Der Wal, Marcel E Ooms, Miel W Ribbe (2004)  Palliative care units in The Netherlands: changes in patients' functional status and symptoms.   J Pain Symptom Manage 28: 3. 233-243 Sep  
Abstract: Although efforts have been made to define optimal terminal care in palliative care units (PCUs), comprehensive longitudinal evaluations of care outcomes in PCUs at the end of life are scarce. In this study, changes in functional status (assistance needed for walking, and toilet use) and symptoms (pain, nausea, shortness of breath, depression, and anxiety) were assessed in all patients (n=355) admitted to 10 PCUs in Dutch nursing homes. Outcomes were measured at 24 hours, 48 hours, one week, and two weeks before death, and at PCU admission. Results show that functional status deteriorated from admission to one week before death, but most symptoms did not worsen in the last three weeks before death. Decreases in pain, anxiety, and nausea were observed. The results suggest that the care provided in the PCUs stabilized the symptom levels. Patients who die between two and four weeks appeared to have more favorable symptom change patterns than patients who die within two weeks, which supports the recommendation to admit eligible patients in earlier phases of their disease. Limitations include the use of proxy measures and some forms of selection bias, which may lead to underestimation of symptom levels.
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Johan Bilsen, Robert Vander Stichele, Freddy Mortier, Jan Bernheim, Luc Deliens (2004)  The incidence and characteristics of end-of-life decisions by GPs in Belgium.   Fam Pract 21: 3. 282-289 Jun  
Abstract: BACKGROUND: Medical end-of-life decisions (ELDs) have been discussed for several years in different countries, but little is known about the involvement of GPs in these ELDs. OBJECTIVES: The aim of the present study was to establish the incidence and characteristics of ELDs by GPs. METHOD: We selected 3999 deaths, a 20% random sample of all registered deaths during the first 4 months of 1998 in Flanders, Belgium, and mailed anonymous questionnaires to the attesting physicians. Here we focus exclusively on the 1647 deaths certified by GPs. RESULTS: The GPs returned 1067 questionnaires (response rate of 64.8%). At least one ELD was made in 39.5% [95% confidence interval (CI) 37.8-41.2] of all primary care deaths. The incidence of euthanasia (including physician-assisted suicide) was 1.5% (95% CI 0.9-2.3) (incidence higher among more educated patients and at home), of administration of lethal drugs without the patient's explicit request 3.8% (95% CI 2.9-5.0) (higher among cancer patients), of alleviation of pain and symptoms with possibly life-shortening effect 18.6% (95% CI 17.0-20.2) (higher among cancer patients and married patients) and of non-treatment decisions 15.6% (95% CI 14.2-17.2) (higher among cancer patients and in nursing homes). The decision was not discussed with the patient in three out of four of the ELDs. A colleague was consulted in one in four ELD cases. CONCLUSION: ELDs are common in general practice in Flanders, Belgium, despite the restrictive law concerning euthanasia at the time of this study. The incidence of these ELDs varies with cause and place of death, the patient's education and the GP's religion and age. Requirements of prudent practice regarding ELDs are rather poorly met by GPs. Further international research and debate is needed to highlight the GPs' important role in end-of-life care.
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2003
 
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L Deliens, G van der Wal (2003)  Similarities and differences between the euthanasia laws in Belgium and the Netherlands   Ned Tijdschr Geneeskd 147: 4. 169-174 Jan  
Abstract: Recently, a law on euthanasia has been adopted in both the Netherlands and Belgium. In both countries euthanasia has been legalized under strict conditions and after confirmation with a notification procedure. Although both laws are similar, the Belgian law is more extensive on the requirements of prudent practice. On the other hand, in Dutch society the norm-setting on euthanasia has been more widely developed through jurisprudence. Nevertheless, we expect that the implementation of the new law and the notification procedure in Belgium will be more difficult than in the Netherlands. In order to promote, safeguard and guarantee the quality of the euthanasia practice, the present euthanasia notification procedure in the Netherlands is supplemented with feedback to the physicians. The strict anonymous procedure in the Belgian notification procedure prevents this possibility. Therefore, Belgian physicians will not be supported by the notification procedure to improve their knowledge and skills in euthanasia.
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Agnes van der Heide, Luc Deliens, Karin Faisst, Tore Nilstun, Michael Norup, Eugenio Paci, Gerrit van der Wal, Paul J van der Maas (2003)  End-of-life decision-making in six European countries: descriptive study.   Lancet 362: 9381. 345-350 Aug  
Abstract: BACKGROUND: Empirical data about end-of-life decision-making practices are scarce. We aimed to investigate frequency and characteristics of end-of-life decision-making practices in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland. METHODS: In all participating countries, deaths reported to death registries were stratified for cause (apart from in Switzerland), and samples were drawn from every stratum. Reporting doctors received a mailed questionnaire about the medical decision-making that had preceded the death of the patient. The data-collection procedure precluded identification of any of the doctors or patients. All deaths arose between June, 2001, and February, 2002. We weighted data to correct for stratification and to make results representative for all deaths: results were presented as weighted percentages. FINDINGS: The questionnaire response rate was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. Total number of deaths studied was 20480. Death happened suddenly and unexpectedly in about a third of cases in all countries. The proportion of deaths that were preceded by any end-of-life decision ranged between 23% (Italy) and 51% (Switzerland). Administration of drugs with the explicit intention of hastening death varied between countries: about 1% or less in Denmark, Italy, Sweden, and Switzerland, 1.82% in Belgium, and 3.40% in the Netherlands. Large variations were recorded in the extent to which decisions were discussed with patients, relatives, and other caregivers. INTERPRETATION: Medical end-of-life decisions frequently precede dying in all participating countries. Patients and relatives are generally involved in decision-making in countries in which the frequency of making these decisions is high.
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F Mortier, J Bilsen, R H Vander Stichele, J Bernheim, L Deliens (2003)  Attitudes, sociodemographic characteristics, and actual end-of-life decisions of physicians in Flanders, Belgium.   Med Decis Making 23: 6. 502-510 Nov/Dec  
Abstract: AIM: To study the effect of sociodemographic and attitudinal determinants of physicians making end-of-life decisions (ELDs). METHODS: The physicians having signed 489 consecutive death certificates in the city of Hasselt (Belgium) were sent an anonymous questionnaire regarding their ELDs and another on their attitudes toward voluntary euthanasia (EUTH) and physician-assisted suicide (PAS). RESULTS: 55% response rate. Nontreatment decisions occurred in 16.7% of all death cases; in 16%, there was potentially life-shortening use of drugs to alleviate pain and symptoms; in 4.8% of cases, death was deliberately induced by lethal drugs, including EUTH, PAS, and life termination without explicit request by the patient. In their attitudes toward EUTH and PAS, the 92 responding physicians clustered into 3 groups: positive and rule oriented, positive rule-adverse, and opposed. Cluster group membership, commitment to life stance, years of professional experience, and gender were each associated with specific ELD-making patterns.
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L Deliens, J L Bernheim, G van der Wal (2003)  A comparative study of the euthanasia laws of Belgium and the Netherlands   Rev Med Liege 58: 7-8. 485-492 Jul/Aug  
Abstract: Recently, laws on euthanasia have been adopted in the Netherlands and Belgium. In both countries the legality of euthanasia is conditioned by adherence to strict conditions and by confirmation after a notification procedure. Although both laws are rather similar, the Belgian law is more fastidious on the requirements of prudent practice. The Belgian law does and the Dutch law does not distinguish between terminal conditions and non-terminal or slowly evolutive chronic conditions. In Belgium, the law only applies to adults, whereas in the Netherlands, minors over 12 years of age may under certain conditions receive euthanasia. However, the Belgian National Medical Disciplinary Board has recently mitigated differences by drafting guidelines which reflect a broad interpretation of the law. A major difference between the two countries is that in the Dutch society the norm setting on euthanasia developed more through jurisprudence and endorsement by the Medical Association than through legislation. We anticipate that the implementation of the new law and the notification procedure may be more difficult in Belgium than in the Netherlands. In order to promote the quality of the euthanasia practice, the euthanasia notification procedure in the Netherlands is followed by systematic feedback to the physicians. The strict anonymity of the Belgian notification procedure will be broken only when the control commission finds some anomaly or deficiency in the declaration. Therefore, unless the Evaluation and Control Commission makes ample use of its prerogative to contact the physician, the Belgian physicians may be less supported by the notification procedure to improve their knowledge and skills in euthanasia.
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2001
 
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L Deliens, F Mortier, J Bilsen, M Cosyns, R Vander Stichele, J Vanoverloop, K Ingels, J Bernheim (2001)  Euthanasia and other medical decisions concerning the end of life in Belgium: epidemiologic studies   Rev Med Liege 56: 6. 443-452 Jun  
Abstract: BACKGROUND: The study presented here is the first replica of the Dutch death certificate study on end of life decisions (ELDs). The main objective was to assess the incidence of euthanasia (the administration of drugs with the explicit intention to shorten the patient's life at the explicit request of the patient), physician assisted suicide (PAS), and other ELDs in medical practice in Belgium (Flanders). METHODS: A 20% random sample of 3,999 deaths was selected from all death certificates between January 1 and April 30, 1998. The physicians who signed the death certificates received one mail questionnaire per death case. FINDINGS: The response rate of the physicians was 52%. The results were corrected for the non response bias, and extrapolated to estimated annual incidences after seasonal adjustment for causes of death. It was estimated that 1.3% (1.0-1.6%, CI: 95) of all deaths resulted from euthanasia or PAS. In 3.2% (2.7-3.8%, CI: 95) of all cases, the physician ended the patient's life with lethal drugs without the explicit request of the patient. Alleviation of pain and symptoms with opioids in doses with a potential life shortening effect preceded death in 18.5% (17.3-19.7%, CI: 95) of cases and nontreatment decisions in 16.4% (15.3-17.5%, CI: 95) of cases, of which 5.8% (5.1-6.5%, CI: 95) with the explicit intention of ending the patient's life. INTERPRETATION: ELDs are prominent in medical practice in Belgium (Flanders). The incidence of deaths preceded by an ELD is similar to the Netherlands, but greater than in Australia. However, in Belgium (Flanders) the incidence of ending of patient's life without the patient's explicit request (3.2%, 2.7-3.8% CI: 95) is similar to Australia (3.5%, 2.7-4.3% CI: 95), but significantly higher than in the Netherlands (0.7%, 0.5-0.9% CI: 95).
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PMID 
A G Verstraete, R H Vander Stichele, L H Deliens (2001)  Ethical issues in pharmacoepidemiological research in Belgium.   Pharmacoepidemiol Drug Saf 10: 7. 595-599 Dec  
Abstract: PURPOSE: To illustrate the ethical issues faced in pharmacoepidemiological research in Belgium. METHODS: The experience with three studies is described. The studies concern the use of drugs for euthanasia in medical practice, cytomegalovirus infection in single solid organ transplants and a comparison of benzodiazepine use in the general population and in acute self-poisoning. RESULTS: With some creativity, it was possible to meet the requirements of the ethics committees and the law on computer databases, e.g. by bringing data validation closer to the data entry process, by assuring anonymity in mailing procedures, or by deleting identification labels as soon as they are no longer necessary. CONCLUSIONS: The existing juridical vacuum has not really impeded pharmacoepidemiological research.
Notes:
2000
 
PMID 
L Deliens, F Mortier, J Bilsen, M Cosyns, R Vander Stichele, J Vanoverloop, K Ingels (2000)  End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey.   Lancet 356: 9244. 1806-1811 Nov  
Abstract: BACKGROUND: Our study is a repeat of the Dutch death-certificate study on end-of-life decisions (ELDs). The main objective was to estimate the frequency of euthanasia (the administration of lethal drugs with the explicit intention of shortening the patient's life at the patient's explicit request), physician-assisted suicide (PAS), and other ELDs in medical practice in Flanders, Belgium. METHODS: A 20% random sample of 3999 deaths was selected from all deaths recorded between Jan 1 and April 30, 1998. The physicians who signed the corresponding death certificates received one questionnaire by post per death. FINDINGS: The physicians' response rate was 1355 (52%). 1925 deaths were described. The results were corrected for non-response bias, and extrapolated to estimated annual rates after seasonal adjustment for death causes, and we estimate that 705 (1.3%, 95% CI 1.0-1.6) deaths resulted from euthanasia or PAS. In 1796 (3.2%, 2.7-3.8) cases, lethal drugs were given without the explicit request of the patient. Alleviation of pain and symptoms with opioids in doses with a potential life-shortening effect preceded death in 10,416 (18.5%, 17.3-19.7) cases and non-treatment decisions in 9218 (16.4%, 15.3-17.5) cases, of which 3261 (5.8%, 5.1-6.5) with the explicit intention of ending the patient's life. INTERPRETATION: ELDs are prominent in medical practice in Flanders. The frequency of deaths preceded by an ELD is similar to that in the Netherlands, but lower than that in Australia. However, in Flanders the rate of administration of lethal drugs to patients without their explicit request is similar to Australia, and significantly higher than that in the Netherlands.
Notes:
 
PMID 
Freddy Mortier, Luc Deliens, Johan Bilsen, Marc Cosyns, Koen Ingels, Robert Vander Stichele (2000)  End-of-life decisions of physicians in the city of Hasselt (Flanders, Belgium)   Bioethics 14: 3. 254-267 Jul  
Abstract: Objectives: The objective of this study is to estimate the proportion of different types of end-of-life decisions (ELDs) of physicians in the city of Hasselt (Flanders, Belgium). The question is addressed to what degree these ELD meet legal constraints and the ethical requirements for prudent practice. Methodology: All physicians of the city of Hasselt who signed at least one death certificate in 1996 (N=166) received an anonymous self-administered mail questionnaire per death case (max. 5/doctor). Results: The response rate was 55% (N=269). In 37.3% of all cases at least one ELD was made (16.5% non-treatment decisions; 16% potential life-shortening by intensifying the treatment of pain and symptoms; 4.8% administration, supply or prescription of lethal drugs). In 59.5% of the cases where an ELD was made that decision was legally questionnable. Patient characteristics were clearly related to the type of ELD. There was no influence of physician characteristics, except for commitment to life-stance. In 71.3% of the cases the ELD was in no way discussed with the patient. 8.1% of the ELD-cases were in response to a direct request from the patient. Conclusions: The incidences of ELDs in Hasselt are consistent with earlier findings. The study shows that religious commitment influences the behaviour of physicians at the end of their patients' life. The patient's and her family's entitlements to participation in the decision making process were rather poorly respected.
Notes:
1993
 
PMID 
L Deliens, B De Deyn (1993)  Radiographic waste coming from Flemish dental offices. A survey of a representative sample of 373 Flemish dentists   Rev Belge Med Dent 48: 4. 44-53  
Abstract: Apart from amalgam, the materials used for dental radiography also endanger the environment. The debate on toxic chemicals in dentistry is focused on the way these radiographic materials (fixator, developer, the small lead plates and the old roentgenograms) are discharged into the environment.This study investigated the answers to the following research questions: What is the total volume of fixator, developer, small lead plates and old roentgenograms that is used in Flemish dentistry and what part ends up in the household waste? How do Flemish dentists manage (store and dispose of) these radiographic materials? A randomly selected group of 500 dentists working in the Flemish part of Belgium was invited to answer a mail questionnaire. A total of 373 dentists responded (response rate 74.6%), providing a representative sample. Of the 2.1 million roentgenograms made yearly in Flemish dentistry only 160,000 are dropped in the household garbage can. About 70% of the 2.2 million small lead plates used yearly in Flemish dentistry is discharged in the household garbage, to end on the rubbish-dump or in the combustion furnace where the lead vapours will poison the surrounding air. Although the storing and the ecological responsible discharging of the pollutants fixator and developer does not pose any problems, most of these products are discharged into the sewage system: about 80% of the 80,000 liter developer and 75% of the 70,000 liter fixator used each year in Flemish dentistry.
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PMID 
L Deliens, B De Deyn (1993)  What efforts are being made by dentists in the Flemish region for the limiting of amalgam rejection? A study conducted on a representative sample of 373 Flemish dentists on the subject of amalgam waste: extent of the problem, waste management and foreseeable solutions   Rev Belge Med Dent 48: 4. 35-43  
Abstract: The great Amalgam debate is also taking place in Flanders (Belgium). Mercury amalgam has been used for dental fillings since the last century. Over that time, questions have occasionally been raised with regard to its safety (mercury vapour given off by the amalgam fillings and the possible dangers that these could cause to the patient and the dentist) and with regard to the ecological impact of amalgam waste. Some materials used to treat dental patients endanger the environment. The most important polluting materials are the heavy metals, in particular mercury. This study investigated the answers to the following research questions: What is the total volume of amalgam that is used in Flemish dentistry and what part ended up in the household waste? How do Flemish dentists manage (store and dispose of) their dental amalgam waste? Are Flemish dentists using any alternatives (amalgam separators or alternative materials for dental fillings) for amalgam? A randomly selected group of 500 dentists working in the Flemish part of Belgium was invited to answer a mail questionnaire. A total of 373 dentists responded (response rate 74.6%), providing a representative sample. Of the 5000 kg amalgam being used in one year in Flemish dentistry, about 1.200 kg is discharged either into the sewage or into the household waste. Furthermore, a supplementary 1.900 kg amalgam (extracted teeth with amalgam fillings or bored out amalgam fillings) is also being discharged either into the sewage or into the household waste. Although dental amalgam is the restorative material most used in Flanders, composite materials are becoming more widely used. Only 5% of the respondents were using an amalgam separator.
Notes:
1992
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