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Table 3 Variations in study methods for 39 jurisdiction-wide surveys and 22 included in analysis of practice variation

From: International changes in end-of-life practices over time: a systematic review

Surveys [1] Included for practice variation analysis Reasons for exclusion [2] Article information [3] Characteristics of professionals surveyed Characteristics of patients Methods to identify physicians [4] Total number of deaths studied or applicable [5] Clear selection criteria Data collection method Practice measurement method Differential response [6] Selective reporting [7] Response rates
Title Year of publication Authors
Netherlands 1995a Yes   Euthanasia and other end-of-life decisions in the Netherlands in 1990,1995, and 2001 2003 Onwuteaka-Philipsen, Bregie D.van der Heide, AgnesKoper, DirkKeij-Deerenberg, Ingeborg Rietjens, Judith A.Rurup, Mette L.Vrakking, Astrid M.Georges, Jean JacquesMuller, Martien T.van der Wal, Gerritvan der Maas, Paul J. 1) Specialities; 2) to be actively practising medicine at the time of interview and had to have done so for the previous 2 years in the same specialty and place Exclusion criteria: the cause of death precluded any kind of end-of-life decision (e.g., a car accident resulting in instant death) Death certificates 135675 Yes Self-administered postal questionnaire Annual incidence Uncertain Yes 77.0 %
Netherlands 1990a Yes   Euthanasia and other medical decisions concerning the end of life 1991 van der Maas, P. J.Vandelden, J. J. M.Pijnenborg, L.Looman, C. W. N. 1) A stratified random sample of 405 physicians was interviewed, including 152 general practitioners, 50 nursing-home physicians, and 203 specialists (cardiologists, surgeons, and specialists in internal medicine, chest disease, and neurology). (Method, section I Interviews with physicians); 2) 6642 Dutch doctors who had signed a death certificate for which medical end-of-life decision were possible (excluding sudden deaths, such accidents.) 5197 responded and returned the questionnaires For all inhabitants of the Netherlands the cause of death is reported to the Central Bureau of Statistics (CBS). The name of the patient is not mentioned on the cause-of-death form but that of the reporting physician is. The medical officer in charge of the cause-of-death statistics drew a stratified sample of 7000 deaths from Aug 1 to Dec 1, 1990. Death certificates 128824 Yes NA Annual incidence No NA 76.0 %
Netherlands 2001a Yes   Euthanasia and other end-of-life decisions in the Netherlands in 1990,1995, and 2001 2003 Onwuteaka-Philipsen, Bregie D.van der Heide, AgnesKoper, DirkKeij-Deerenberg, Ingeborg Rietjens, Judith A.Rurup, Mette L.Vrakking, Astrid M.Georges, Jean JacquesMuller, Martien T.van der Wal, Gerritvan der Maas, Paul J. 1) Specialities; 2) to be actively practising medicine at the time of interview and had to have done so for the previous 2 years in the same specialty and place. Exclusion criteria: the cause of death precluded any kind of end-of-life decision (e.g., a car accident resulting in instant death) Death certificates 140377 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 74.00 %
Netherlands 1990b Yes   Euthanasia and other medical decisions concerning the end of life 1991 van der Maas, P. J.Vandelden, J. J. M.Pijnenborg, L.Looman, C. W. N. 1) A stratified random sample of 405 physicians was interviewed, including 152 general practitioners, 50 nursing-home physicians, and 203 specialists (cardiologists, surgeons, and specialists in internal medicine, chest disease, and neurology). (Method, section I Interviews with physicians); 2) 6642 Dutch doctors who had signed a death certificate for which medical end-of-life decision were possible (excluding sudden deaths, such accidents.) 5197 responded and returned the questionnaires (Method; Section II Death certificates) For all inhabitants of the Netherlands the cause of death is reported to the Central Bureau of Statistics (CBS). The name of the patient is not mentioned on the cause-of-death form but that of the reporting physician is. The medical officer in charge of the cause-of-death statistics drew a stratified sample of 7000 deaths from Aug 1 to Dec 1, 1990. Physicians 128824 Yes Interview Annual incidence Yes Yes 68.0 %
Netherlands 2010a Yes   Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey 2012 Onwuteaka-Philipsen, Bregje D.Brinkman-Stoppelenburg, AriannePenning, Corinede Jong-Krul, Gwen J.van Delden, Johannes J.van der Heide, Agnes All attending physicians of the sampled cases in strata two to five (See question 6) received a questionnaire. 1) All deaths that occurred in that period were assigned to one of five strata. When the cause of death clearly precluded end-of-life decision-making), cases were assigned to stratum one. These cases were retained in the sample, but no questionnaires were sent out to the physician. Cases were assigned to one of the other strata looking at the likelihood that an end-of-life decision had preceded death: when this decision was unlikely cause of death was allocated to stratum two, when this decision was possible to stratum three, and when this decision was more probable (e.g., cancer) to stratum four. Cases were assigned to stratum five when the physician had noted on the death certificate that they had actively ended the life of the patient. Death certificates 136056 Yes Self-administered postal questionnaire Annual incidence Yes Yes 74.0 %
Belgium (Flanders) 2001/2002a Yes   End-of-life medical decisions in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. [Dutch] medische besluiten rond het levenseinde in 6 europese landen: belgie, denemarken, italie, nederland, zweden en zwitserland 2003 Van Der Heide, A.Deliens, L.Faisst, K.Nilstun, T.Norup, M.Paci, E.Van Der Wal, G.Van Der Maas, P. J. Danish, Italian, and Dutch samples included a stratum in which end-of-life decisions were precluded on the basis of information on the death certificate, for which no questionnaires were sent out. For all other sampled cases, the attending doctors were asked if death had arisen suddenly and unexpectedly. Random samples of death certificates of people aged 1 year or older from death registries to which all deaths are reported. The sampling period varied between 3 and 6 months, but all deaths that we included arose between June 2001, and February 2002. EURELD-death certificates 55793 Yes NA Annual incidence No Yes 59.0 %
Netherlands 2001b Yes   Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001 2003 Onwuteaka-Philipsen, Bregie D.van der Heide, AgnesKoper, DirkKeij-Deerenberg, IngeborgRietjens, Judith A.Rurup, Mette L.Vrakking, Astrid M.Georges, Jean JacquesMuller, Martien T.van der Wal, Gerritvan der Maas, Paul J. 1) Specialities; 2) to be actively practising medicine at the time of interview and had to have done so for the previous 2 years in the same specialty and place Exclusion criteria: the cause of death precluded any kind of end-of-life decision (e.g., a car accident resulting in instant death) Physicians 140377 Yes Interview Annual incidence Yes Yes 85.0 %
Denmark 2001/2002a Yes   End-of-life medical decisions in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. [Dutch] medische besluiten rond het levenseinde in 6 europese landen: belgie, denemarken, italie, nederland, zweden en zwitserland 2003 Van Der Heide, A.Deliens, L.Faisst, K.Nilstun, T.Norup, M.Paci, E.Van Der Wal, G.Van Der Maas, P. J. Danish, Italian, and Dutch samples included a stratum in which end-of-life decisions were precluded on the basis of information on the death certificate, for which no questionnaires were sent out. For all other sampled cases, the attending doctors were asked if death had arisen suddenly and unexpectedly. Random samples of death certificates of people aged 1 year or older from death registries to which all deaths are reported. The sampling period varied between 3 and 6 months, but all deaths that we included arose between June 2001, and February 2002. EURELD-death certificates 58722 Yes NA Annual incidence No Yes 62.0 %
Netherlands 1994–1998 (ALS patients) No Specific population of patients Euthanasia and physician-assisted suicide in Dutch patients with amyotrophic lateral sclerosis. [Dutch] euthanasie en hulp bij zelfdoding bij patienten met amyotrofische laterale sclerose in nederland 2004 Veldink, J. H.Wokke, J. H. J.Van Der Wal, G.De Jong, J. M. B. V.Van Den Berg, L. H. The family physicians of 279 Dutch patients who fulfilled the criteria for possible, probable or definite ALS, who were known in the Utrecht University Medical Centre or the Academic Medical Centre in Amsterdam, the Netherlands, and who had died in the period 1994–1998 were asked to fill out a validated questionnaire about the various medical end-of-life decisions that had been taken and their possible clinical, care-related and social determinants. NA ALS patients 279 Yes Self-administered postal questionnaire Annual incidence No Yes 84.0 %
Australia 1996b Yes   End-of-life decisions in Australian medical practice 1997 Kuhse, H.Singer, P.Baume, P.Clark, M.Rickard, M. 1. 3000 doctors taken at random from a list of 27000 Australian doctors extracted from the Australian Medical Masterfile Database (Australasian Medical Publishing Company, Sydney), one of 27 medical disciplines where there would be the possibility of making a medical end-of-life decision; 2- the 27 medical disciplines (also extracted from the Australian Medical Masterfile Database) as comparable as possible with the broader categories of doctors (cardiology, surgery, internal medicine, respiratory medicine [pulmonology], neurology, general practitioners and nursing home physicians) who were attendant to 87 % of hospital deaths and nearly all deaths outside hospitals in the Netherlands; 3- The initial questions on the questionnaire narrowed the field of respondents to include the 1361 doctors who had attended a death within the last 12 months. NA Physicians 125771 Yes Self-administered postal questionnaire Annual incidence Yes Yes 64.0 %
Sweden 2001/2002a Yes   End-of-life medical decisions in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. [Dutch] medische besluiten rond het levenseinde in 6 europese landen: belgie, denemarken, italie, nederland, zweden en zwitserland 2003 Van Der Heide, A.Deliens, L.Faisst, K.Nilstun, T.Norup, M.Paci, E.Van Der Wal, G.Van Der Maas, P. J. Danish, Italian, and Dutch samples included a stratum in which end-of-life decisions were precluded on the basis of information on the death certificate, for which no questionnaires were sent out. For all other sampled cases, the attending doctors were asked if death had arisen suddenly and unexpectedly. Random samples of death certificates of people aged 1 year or older from death registries to which all deaths are reported. The sampling period varied between 3 and 6 months, but all deaths that we included arose between June 2001, and February 2002. EURELD-death certificates 93755 Yes NA Annual incidence No Yes 61.0 %
Netherlands 2001/2002a Yes   End-of-life medical decisions in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. [Dutch] medische besluiten rond het levenseinde in 6 europese landen: belgie, denemarken, italie, nederland, zweden en zwitserland 2003 Van Der Heide, A.Deliens, L.Faisst, K.Nilstun, T.Norup, M.Paci, E.Van Der Wal, G.Van Der Maas, P. J. Danish, Italian, and Dutch samples included a stratum in which end-of-life decisions were precluded on the basis of information on the death certificate, for which no questionnaires were sent out. For all other sampled cases, the attending doctors were asked if death had arisen suddenly and unexpectedly. Random samples of death certificates of people aged 1 year or older from death registries to which all deaths are reported. The sampling period varied between 3 and 6 months, but all deaths that we included arose between June 2001, and February 2002. EURELD-death certificates 140377 Yes NA Annual incidence No Yes 75.0 %
Switzerland (German- speaking) 2001/2002a Yes   End-of-life medical decisions in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. [Dutch] medische besluiten rond het levenseinde in 6 europese landen: belgie, denemarken, italie, nederland, zweden en zwitserland 2003 Van Der Heide, A.Deliens, L.Faisst, K.Nilstun, T.Norup, M.Paci, E.Van Der Wal, G.Van Der Maas, P. J. Danish, Italian, and Dutch samples included a stratum in which end-of-life decisions were precluded on the basis of information on the death certificate, for which no questionnaires were sent out. For all other sampled cases, the attending doctors were asked if death had arisen suddenly and unexpectedly. Random samples of death certificates of people aged 1 year or older from death registries to which all deaths are reported. The sampling period varied between 3 and 6 months, but all deaths that we included arose between June 2001, and February 2002. EURELD-death certificates 44036 Yes NA Annual incidence No Yes 67.0 %
UK 2007/2008b Yes   Hastening death in end-of-life care: a survey of doctors 2009 Seale, Clive 1) Binley’s database (http://www.binleys.com/) of UK medical practitioners was used to send questionnaires to 8857 working UK medical practitioners, comprising separate random samples of 2829 GPs, 443 neurologists, 836 specialists in care of the elderly, 462 specialists in palliative medicine and 4287 in other hospital specialties in 2007 to 2008; 2) Excluding specialties such as public health where doctors do not normally treat people who die; 3) Neurologists, palliative medicine and care of the elderly specialists were over sampled in relation to their proportions in the medical population to enable exploration of the circumstances of elderly people, people receiving specialist palliative care, and those with multiple sclerosis (MS) and motor neurone disease (MND). NA Physicians 72071 Yes Self-administered postal questionnaire Annual incidence Yes Yes 42.1 %
Italy 2001/2002a Yes   End-of-life medical decisions in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. [Dutch] medische besluiten rond het levenseinde in 6 europese landen: belgie, denemarken, italie, nederland, zweden en zwitserland 2003 Van Der Heide, A.Deliens, L.Faisst, K.Nilstun, T.Norup, M.Paci, E.Van Der Wal, G.Van Der Maas, P. J. Danish, Italian, and Dutch samples included a stratum in which end-of-life decisions were precluded on the basis of information on the death certificate, for which no questionnaires were sent out. For all other sampled cases, the attending doctors were asked if death had arisen suddenly and unexpectedly. Random samples of death certificates of people aged 1 year or older from death registries to which all deaths are reported. The sampling period varied between 3 and 6 months, but all deaths that we included arose between June 2001, and February 2002. EURELD-death certificates 22368 Yes NA Annual incidence No Yes 44.0 %
Belgium (Flanders) 1998a Yes   The incidence and characteristics of end-of-life decisions by GPs in Belgium 2004 Bilsen, JohanStichele, Robert VanderMortier, FreddyBernheim, JanDeliens, Luc Identified the speciality of the attesting physicians (GP or specialist) for each of the 3999 sampled death certificates and selected only the cases in the data set for which a GP returned the questionnaire "A 20 % random sample was taken from all death certificates signed between January 1 and April 30, 1998." Death certificates 56354 Yes Self-administered postal questionnaire Annual incidence Not reported No 64.8 %
Belgium 2005/2006a Yes   Euthanasia and other end of life decisions and care provided in final three months of life: nationwide retrospective study in Belgium 2009 Van Den Block, L.Deschepper, R.Bilsen, J.Bossuyt, N.Van Casteren, V.Deliens, L. Inclusion criteria: registered the death of a patient between 1 January 2005 and 31 December 2006 in Belgium Inclusion Criteria: 1) Died between 1 January 2005 and 31 December 2006 in Belgium; 2) Be over the age of one year; 3) Non-sudden death Death certificates 2690 Yes NA Annual incidence Yes Yes 64.3 %
France 2009a Yes   End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 act of parliament on patients' rights and end of life 2012 Pennec, S.Monnier, A.Pontone, S.Aubry, R. Inclusion criteria: Having completed a death certificate in December 2009 1) Aged 18 and over; 2) died in France in December 2009 Death certificates 47872 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 40.0 %
Netherlands 1990 (Prospective) Yes   Euthanasia and other medical decisions concerning the end of life 1991 van der Maas, P. J.Vandelden, J. J. M.Pijnenborg, L.Looman, C. W. N. 1) A stratified random sample of 405 physicians was interviewed, including 152 general practitioners, 50 nursing-home physicians, and 203 specialists (cardiologists, surgeons, and specialists in internal medicine, chest disease, and neurology). (Method, section I Interviews with physicians); 2) 6642 Dutch doctors who had signed a death certificate for which medical end-of-life decision were possible (excluding sudden deaths, such accidents.) 5197 responded and returned the questionnaires For all inhabitants of the Netherlands the cause of death is reported to the Central Bureau of Statistics (CBS). The name of the patient is not mentioned on the cause-of-death form but that of the reporting physician is. The medical officer in charge of the cause-of-death statistics drew a stratified sample of 7000 deaths from Aug 1 to Dec 1, 1990. Prospective 128786 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 80.0 %
Netherlands 1995b Yes   Euthanasia and other end-of-life decisions in the Netherlands in 1990,1995, and 2001 2003 Onwuteaka-Philipsen, Bregie D.van der Heide, AgnesKoper, DirkKeij-Deerenberg, IngeborgRietjens, Judith A.Rurup, Mette L.Vrakking, Astrid M.Georges, Jean JacquesMuller, Martien T.van der Wal, Gerritvan der Maas, Paul J. 1) Specialities; 2) to be actively practising medicine at the time of interview and had to have done so for the previous 2 years in the same specialty and place Exclusion criteria : the cause of death precluded any kind of end-of-life decision (e.g., a car accident resulting in instant death) Physicians 135675 Yes Interview Annual incidence Not reported Yes 74.0 %
Belgium (Flanders) 1999/2000c No Specific population of patients The first five years of euthanasia legislation in Belgium and the Netherlands: Description and comparison of cases 2012 Rurup, Mette L.Smets, TinneCohen, JoachimBilsen, JohanOnwuteaka-Philipsen, Bregje D.Deliens, Luc The anonymized databases of the reported cases of euthanasia in Belgium and the Netherlands were made available by the review committees. We selected all cases reported between 22 September 2002 (date of first report in Belgium) and the end of 2007 in both databases The anonymized databases of the reported cases of euthanasia in Belgium and the Netherlands were made available by the review committees. We selected all cases reported between 22 September 2002 (date of first report in Belgium) and the end of 2007 in both databases Neonates/infants 292 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 87.0 %
Netherlands 2005a Yes   End-of-Life Practices in the Netherlands under the Euthanasia Act 2007 van der Heide, A., B. D. Onwuteaka-Philipsen, M. L. Rurup, H. M. Buiting, J. J. van Delden, J. E. Hanssen-de Wolf, A. G. Janssen, H. Pasman, J. A. Rietjens, C. J. Prins, I. M. Deerenberg, J. K. Gevers, P. J. van der Maas and G. van der Wal 1) To be licensed physicians practicing in Oregon from the Oregon State Board of Medical Examiners (BME) in November 1994; 2) We defined “attending physicians” as all physicians in Oregon licensed in the following specialties: internal medicine, family practice, general practice, neurology, gynaecology, therapeutic radiology, and surgery NA Death certificates 136402 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 77.80 %
Netherlands 2001c No Specific population of patients [No conspicuous changes in the practice of medical end-of-life decision-making for neonates and infants in the Netherlands in 2001 as compared to 1995] 2005 Vrakking, A. M.van der Heide, A.Onwuteaka-Philipsen, B. D.Keij-Deerenberg, I. M.van der Maas, P. J.van der Wal, G. The questionnaires which were sent to the physicians who reported the deaths, included structured questions about whether or not death had been preceded by end-of-life decisions, i.e. decisions to withhold or withdraw potentially life-prolonging treatment or to administer (potentially) life-shortening drugs, and questions about the decision-making process. In both years, all deaths of children under the age of one year that took place in August-November (1995: n = 338; 2001: n = 347) were studied Neonates/infants 1088 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 84.0 %
Netherlands 2005/2006 (HGG patients) No Specific population of patients Decision-making in the end-of-life phase of high-grade glioma patients 2012 Sizoo, E. M.Pasman, H. R.Buttolo, J.Heimans, J. J.Klein, M.Deliens, L.Reijneveld, J. C.Taphoorn, M. J. "The physicians involved in end-of-life care of deceased patients of the cohort were approached for participation in the study. (…) If more than one physician was involved in end of life care for a specific patient (for example due to a transition in health care setting close before death), all physicians were approached for participation in the study" "adult HGG patients diagnosed in 2005 and 2006 in three tertiary referral centres for brain tumour patients (VU University Medical Centre and Academic Medical Centre Amsterdam Amsterdam, Medical Centre Haaglanden The Hague, The Netherlands)" HGG patients 223 Yes Self-administered questionnaire Annual incidence No Yes 62.0 %
Netherlands 1995c No Specific population of patients [No conspicuous changes in the practice of medical end-of-life decision-making for neonates and infants in the Netherlands in 2001 as compared to 1995] 2005 Vrakking, A. M.van der Heide, A.Onwuteaka-Philipsen, B. D.Keij-Deerenberg, I. M.van der Maas, P. J.van der Wal, G. The questionnaires which were sent to the physicians who reported the deaths, included structured questions about whether or not death had been preceded by end-of-life decisions, i.e. decisions to withhold or withdraw potentially life-prolonging treatment or to administer (potentially) life-shortening drugs, and questions about the decision-making process. In both years, all deaths of children under the age of one year that took place in August-November (1995: n = 338; 2001: n = 347) were studied Neonates/infants 1041 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 88.0 %
Belgium (Hasselt, Flanders) 1996a Yes   Attitudes, socio-demographic characteristics, and actual end-of-life decisions of physicians in Flanders, Belgium 2003 Mortier, F.Bilsen, J.Vander Stichele, R. H.Bernheim, J.Deliens, L. "All physicians who signed a death certificate" in 1996 in the city of Hasselt (Flanders) "All official death certificates of the 970 deaths in Hasselt in 1996 were retrieved for the study." Death certificates 970 Yes Self-administered postal questionnaire Annual incidence Yes Yes 55.0 %
Belgium (Flanders) 2007a Yes   Trends in medical end-of-life decision making in Flanders, Belgium 1998-2001-2007 2011 Chambaere, K.Bilsen, J.Cohen, J.Onwuteaka-Philipsen, B. D.Mortier, F.Deliens, L. Every certifying physician was sent a 5-page questionnaire for a maximum of 5 cases, with at most 3 reminders in case of nonresponse. We performed a death certificate survey in Flanders, the Flemish-speaking part of Belgium, which has about 6 million inhabitants and approximately 55,000 deaths per year. This study was similar to those performed in 1998 and 2001. A stratified random sample of deaths was drawn by the central administration authority for death certificates, the Flemish Agency for Care and Health. All deaths between 1 June 2007 and 30 November 2007 of Belgian residents aged 1 year or older were first assigned to 1 of 4 strata, based on the underlying cause of death as indicated on the death certificate and the estimated corresponding likelihood of an end-of-life practice. Sampling fractions for each stratum increased with this likelihood. Death certificates 54881 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 58.4 %
Netherlands 2005/2006 (Neonates/infants (Aug to Nov)) No Specific population of patients Analgesics, sedatives and neuromuscular blockers as part of end-of-life decisions in Dutch NICUs 2009 Verhagen, A. A.Dorscheidt, J. H. Engels, B.Hubben, J. H.Sauer, P. J. Caring of a infants for newborns in group II (Patients and methods - Interviews, p.F435); Group II : stabilised newborns with a poor prognosis "infants who died before the age of 2 months between October 2005 and September 2006 in the NICUs" Neonates/infants (Aug to Nov) NA Yes Interview Annual incidence Not reported Yes 97.80 %
Sweden 1998b No Specific population of physicians Palliative care, assisted suicide and euthanasia: Nationwide questionnaire to Swedish physicians 2000 Valverius, E.Nilstun, T.Nilsson, B. Inclusion criteria: Swedish Pharmaceutical Statistics OR working in palliative care units in Sweden OR members of the Swedish Association for the Study of Pain Inclusion criteria: deceased during 1997 Physicians 952 Yes Self-administered postal questionnaire Annual incidence No Yes 78.0 %
UK 2004b Yes   National survey of end-of-life decisions made by UK medical practitioners 2006 Seale, C. 1) A random sample of 1000 general practitioners (GPs) and 1000 hospital specialists listed on Binley’s database (www.binleys.com) of all working UK medical practitioners (updated in September 2004) were sent questionnaires, with two follow-up reminders, between October and December 2004; 2) specialties where doctors could not be expected to have attended a death in the previous year (e.g., public health) were excluded NA Physicians 22558 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 53.0 %
Netherlands 2005/2006 (Neonates/infants (group I)) No Specific population of patients Analgesics, sedatives and neuromuscular blockers as part of end-of-life decisions in Dutch NICUs 2009 Verhagen, A. A.Dorscheidt, J. H.Engels, B.Hubben, J. H.Sauer, P. J. Caring of a infants for newborns in group II (Patients and methods - Interviews, p.F435); Group II : stabilised newborns with a poor prognosis "infants who died before the age of 2 months between October 2005 and September 2006 in the NICUs" Neonates/infants (group I) 359 Yes NA Annual incidence Yes Yes 98.00 %
Belgium (Flanders) 2007 (Death certificates (cancer patients)) Yes   Trends in End-of-Life Decision Making in Patients With and Without Cancer 2013 Pardon, KoenChambaere, KennethPasman, H. Roeline W.Deschepper, ReginaldRietjens, JudithDeliens, Luc Physicians who had attested to the sampled death certificates were sent a 5-page paper-and-pencil questionnaire by the Flemish Agency about the medical decisions made at the patient’s end of life, the decision-making process, and the care provided. We conducted a nationwide death certificate study in 2007 in Flanders, analogous to our death certificate study of 1998. The Flemish Agency for Care and Health selected a random stratified sample of all death certificates of persons ages 1 year or older from June to November 2007. Death certificates (cancer patients) 15257 Yes Self-administered postal questionnaire Annual incidence Yes Yes 58.4 %
Belgium (Flanders) 2007 (Death certificates (non-cancer patients)) Yes   Trends in End-of-Life Decision Making in Patients With and Without Cancer 2013 Pardon, KoenChambaere, KennethPasman, H. Roeline W.Deschepper, ReginaldRietjens, JudithDeliens, Luc Physicians who had attested to the sampled death certificates were sent a 5-page paper-and-pencil questionnaire by the Flemish Agency about the medical decisions made at the patient’s end of life, the decision-making process, and the care provided. We conducted a nationwide death certificate study in 2007 in Flanders, analogous to our death certificate study of 1998. The Flemish Agency for Care and Health selected a random stratified sample of all death certificates of persons ages 1 year or older from June to November 2007. Death certificates (non-cancer patients) 39624 Yes Self-administered questionnaire Annual incidence Yes Yes 58.4 %
Netherlands 2001 (Children (1 to 17y) (Aug to Dec)) No Specific population of patients Medical end-of-life decisions for children in the Netherlands 2005 Vrakking, A. M.van der Heide, A.Arts, W. F.Pieters, R.van der Voort, E.Rietjens, J. A.Onwuteaka-Philipsen, B. D.van der Maas, P. J.van der Wal, G. Inclusion criteria: have reported a death of a child between August 1 and December 1, 2001. STUDY 1:Inclusion criteria: have died between August 1 and December 1, 2001 in the Netherlands, aged between 1–17 years Children (1 to 17y) (Aug to Dec) 610 Yes Self-administered postal questionnaire Annual incidence Not reported Yes 75.0 %
Netherlands 2005/2006 (Neonates/infants (group II)) No Specific population of patients Analgesics, sedatives and neuromuscular blockers as part of end-of-life decisions in Dutch NICUs 2009 Verhagen, A. A.Dorscheidt, J. H.Engels, B.Hubben, J. H.Sauer, P. J. Caring of a infants for newborns in group II (Patients and methods - Interviews, p.F435); Group II : stabilised newborns with a poor prognosis "infants who died before the age of 2 months between October 2005 and September 2006 in the NICUs" Neonates/infants (group II) 359 Yes NA Annual incidence Yes Yes 98.00 %
Netherlands 1996–1998 (Dementia in nursing homes) No Specific population of patients End-of-Life Decision Making in Nursing Home Residents with Dementia and Pneumonia: Dutch Physicians' Intentions Regarding Hastening Death 2005 van der Steen, Jenny T.van der Wal, GerritMehr, David R.Ooms, Marcel E.Ribbe, Miel W. Nursing home physicians, who are employed by the nursing home in the Netherlands, completed questionnaires regarding their decisions and treatments at the time of deciding to withhold antibiotics. We identified eligible subjects from a nationwide Dutch study of 706 nursing home residents with dementia who were diagnosed with pneumonia. For the present analyses, we first selected the 165 (23 %) patients who physicians decided not to treat with antibiotics. As shown in Figure 1, we excluded 22 patients, including 12 who survived for 3 months and 8 who died of another cause or a second episode of pneumonia. Dementia in nursing homes 143 Yes Self-administered questionnaire Annual incidence No Yes 86.7 %
Belgium (Flanders) 2007/2008 (NSCLC patients) No Specific population of patients Expressed wishes and incidence of euthanasia in advanced lung cancer patients 2012 Pardon, K.Deschepper, R.Vander Stichele, R.Bernheim, J. L.Mortier, F.Schallier, D.Germonpre, P.Galdermans, D.Van Kerckhoven, W.Deliens, L.Eolic Consortium We asked the pulmonologist or oncologist and the general practitioner (GP) of the patient to fill in an after-death questionnaire for those patients who died within 18 months of inclusion in the study. Patients conformed to the following inclusion criteria: a recent initial diagnosis of non-small cell lung cancer (NSCLC) stage IIIb or IV, 18 yrs. or older, Dutch speaking and physically and psychologically able to participate in the study. The patients were recruited consecutively during one year by pulmonologists and oncologists in 13 hospitals in Flanders. NSCLC patients 291 Yes Self-administered questionnaire Annual incidence Not reported Yes 91.3 %
Sweden 1998 (Palliative care physicians) No Specific population of physicians Palliative care, assisted suicide and euthanasia: Nationwide questionnaire to Swedish physicians 2000 Valverius, E.Nilstun, T.Nilsson, B. Inclusion criteria: Swedish Pharmaceutical Statistics OR working in palliative care units in Sweden OR members of the Swedish Association for the Study of Pain Inclusion criteria: deceased during 1997 Palliative care physicians 122 Yes Self-administered postal questionnaire Annual incidence No Yes 83.0 %
Sweden 1998 (Association for the Study of Pain Physicians) No Specific population of physicians Palliative care, assisted suicide and euthanasia: Nationwide questionnaire to Swedish physicians 2000 Valverius, E.Nilstun, T.Nilsson, B. Inclusion criteria: Swedish Pharmaceutical Statistics OR working in palliative care units in Sweden OR members of the Swedish Association for the Study of Pain Inclusion criteria: deceased during 1997 Association for the Study of Pain Physicians 130 Yes Self-administered postal questionnaire Annual incidence No Yes 82.0 %
EUROPE 2005 (RICU patients) No Specific population of patients End-of-life decision-making in respiratory intermediate care units: A European survey 2007 Nava, S.Sturani, C.Hartl, S.Magni, G.Ciontu, M.Corrado, A.Simonds, A. Once approved by the ERS office, a formal letter was sent by e-mail to all of the participants in the census on the epidemiology of RICUs in Europe, performed in 2002, and all members of the ERS Respiratory Intensive Care Assembly to invite them to participate in the present study. The aim of this task force, conducted between May 1, 2005 and October 31, 2005, was to collect data regarding end-of-life decisions in RICUs and high dependency units (HDUs) within Europe by means of a prospective questionnaire. RICU patients 6008 Yes Self-administered web questionnaire Annual incidence Yes Yes 21.5 %
New Zealand 2000b Yes Specific population of physicians End of life decision-making by New Zealand general practitioners: A national survey 1196 Mitchell, K.Owens, R. G. 1) The questionnaire was administered to GPs in New Zealand (in August and September, 2000). It asked for details on the last death in the previous 12 months for which the physician was the attendant doctor, and whether that physician had access to a multidisciplinary palliative care team; 2) There are approximately 3000 practising GPs in New Zealand and a questionnaire was sent to 2602 on a commercial mailing list. NA Physicians 693 Yes Self-administered postal questionnaire Annual incidence Uncertain Yes 48.0 %
  1. Note: [1] the end-of-life surveys were identified by the jurisdictions of investigation, year of study and methods to identify physicians; a = death certificate studies, b = physician survey, c = neonate or infant study; [2] the term “exclusion” meant the surveys excluded from statistical analyses with other surveys because of the focus on specific populations or geographic regions; [3] the article listed in the table was the one that used for data extraction; [4] the methods to identify physicians included death certificates, physicians (registries or associations), neonate/infants (patients or death certificates), or other specific patient groups; [5] the numbers in the column might be the total numbers of deaths that the frequencies of end-of-life practices could be applied or total numbers of death studied; [6] differential response meant the response rates might differ across sampling strata or subgroups; [7] selective reporting meant that not all results of a single study were reported in the article