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

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 %