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Table 2 Main characteristics of the included studies

From: The involvement of family in the Dutch practice of euthanasia and physician assisted suicide: a systematic mixed studies review

Author Year Objective Study type Participants/Setting
Qualitative Studies
 Meyboom-de Jong [36] 1983 To discuss 4 cases of active life termination on request case study cases of patients with cancer (n = 3) and obstructive lung disease (n = 1) who died by euthanasia, recounted by different GPs
 Ponsioen [44] 1983 To discuss 3 cases of active life termination on request case study cases of patients with cancer (n = 2) and ALS (n = 1) who died by euthanasia reported by a GP
 Koerselman [68] 1986 To describe cases of patients exercising their autonomy case study case of a daughter of a cancer patient who died after euthanasia (n = 1), reported by a psychiatrist
 Ponsioen [65] 1997 To evaluate the role of the consulting physician in the context of EAS in the homecare setting case study cases of patients with cancer (n = 2) recounted by a GP
 Pool [9] 1996 To describe the euthanasia practice in one Dutch hospital ethnographic research In-hospital observations of and interviews with patients (n = + − 50) with end-stage diseases, involved family members and attending healthcare professionals
 The [34] 1997 To describe the role of nurses in euthanasia cases and other end-of-life decisions in one Dutch hospital ethnographic research In-hospital observations of and interviews with patients with end-stage lung disease (n = 50), the involved nurses, family members and other healthcare professionals
 Norwood [35] 2009 To describe the day -to-day experience of EAS decision-making and performance in Dutch family practice ethnographic research observations of and interviews with GPs and patients (n = 14 and n = 650), case study research with a selection of GPs (n = 10) and their end-of-life patients (n = 25)
 Marwijk et al. [78] 2007 To obtain further insight into the emotional impact on GPs of performing euthanasia or assisted suicide, and to tailor the educational needs of vocational GP-trainees accordingly focus groups GPs (N = 22)
 Ciesielski-Carlucci and Kimsma [38] 2000 To recount the stories of physicians and families who have experience with assisted dying in-depth interviews physicians who ever have performed EAS (n = 11), relatives of patients who died by EAS (n = 12)
 Georges et al. [81] 2008 To describe GPs’ experiences in dealing with requests for EAS from terminally ill patients and to gain insight into factors that are related to their restrictive attitude towards euthanasia in-depth interviews GPs (n = 30)
 Pasman et al. [46] 2009 To examine how patients whose request for euthanasia was not granted or performed described their suffering, how their physicians assessed suffering in those cases and how they describe unbearable suffering in general. in-depth interviews patients with advance directives whose EAS request was refused (n = 10) and treating physicians (n = 16, mostly GPs)
 Rurup et al. [39] 2010 To examine how physicians and patients think about ADs for euthanasia in the case of dementia, how they experience the discussion of discussing ADs for dementia, what they expect about the use of ADs in clinical practice in-depth interviews patients with an advanced directive due to dementia of the fear of dementia (n = 7), relatives (n = 4) and their physicians (n = 9)
 Buiting et al. [76] 2011 To investigate whether and how palliative treatment alternatives come up during and before euthanasia consultations and how the availability of possible palliative treatment alternatives are assessed in-depth interviews consulting physicians (n = 14), physicians who had requested an euthanasia consultation (n = 12)
 Dees et al. [45] 2011 To explore what patients who had explicitly requested EAS considered ‘suffering’ to entail and what made their suffering ‘unbearable’. in-depth interviews patients with an explicit request for EAS (n = 31)
 Booij et al. [37] 2013 To obtain in-depth information about patients’ thoughts on and attitudes towards euthanasia, PAS and the use of advance directives in HD and to assess the difficulties patients encounter when thinking about end-of-life wishes in-depth interviews patients with Huntington’s disease (n = 14)
 Dees et al. [64] 2013 To explore the decision-making process in cases where patients request euthanasia and to understand the different themes relevant to the optimization of this decision-making process in-depth interviews patients with an explicit request for EAS (n = 31), the most-closely involved relatives (n = 31), treating physicians (n = 28, mostly GPs).
 Snijdewind et al. [11] 2014 To identify and categorize the characteristics of EAS requests that are more complex than others in-depth interviews physicians (n = 28, mainly GPs), relatives of patients whose EAS request was granted or refused (n = 22)
 Kouwenhoven et al. [41] 2015 To investigate the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia in-depth interviews physicians (n = 49, medical specialists, GPs and elderly care physicians) and members of the general public (n = 16)
 Snijdewind et al. [79] 2016 To show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS. in-depth interviews physicians with experience with complex EAS cases (n = 28)
 Cate et al. [12] 2017 To gain a better understanding of the considerations that play a role when physicians decide on a request for EAS in-depth interviews GPs (n = 33)
Miller et al. [69] 2017 To assess how Dutch regional euthanasia review committees apply EAS due care criteria in cases where the criteria are judged not to have been met and to evaluate how the criteria function to set limits in Dutch EAS practice. content analysis, qualitative reports of EAS cases where the due care criteria were not met (n = 32)
Quantitative Studies
 van der Wal et al. [57] 1991 To examine the suffering of patients who died by euthanasia or assisted suicide survey, retrospective, questionnaires patient cases (n = 388) of GPs
 van der Wal et al. [53] 1992 To determine whether Dutch family doctors acted prudently with regard to EAS survey, retrospective, questionnaires GPs (n = 667)
 Muller et al. [61] 1996 To obtain insight into the involvement of a patient’s social network in the process leading to the administration of euthanasia and assisted suicide survey, retrospective, questionnaires GPs (n = 1044), nursing home physicians (n = 713)
 Verhoef et al. [54] 1997 To describe the incidence of euthanasia and assisted suicide in family practice in the Netherlands, the reasons for its practice, and the characteristics of patients and physicians involved survey, cross-sectional, questionnaires GPs (n = 667)
 Willems et al. [91] 2000 To compare attitudes and practices concerning the end-of-life decisions between physicians in the United States and in the Netherlands survey, interviews with vignettes clinical specialists (internists) from the Netherlands (n = 67) and Oregon, USA (n = 152)
 Swarte et al. [77] 2003 To assess how euthanasia in terminally ill cancer patients affects the grief response of bereaved family and friends survey, questionnaires family members and close friends of cancer patients who died by euthanasia (n = 189), control group of cancer patients who died a natural death (n = 316)
 Heide et al. [67] 2003 To investigate the frequency and characteristics of end-of-life decision making in six European countries survey, questionnaires attending physicians related to death certificates (n = 20,580)
 Groenewoud et al. [55] 2004 To describe the practice of psychiatric consultation with regard to explicit requests for euthanasia or physician-assisted suicide in the Netherlands survey, questionnaires psychiatrists (n = 549)
 Jansen et al. [51] 2005 To obtain information about the characteristics of requests for euthanasia and physician-assisted suicide (EAS) and to distinguish between different types of situations that can arise between the request and the physician’s decision survey, questionnaires GPs (n = 3614)
 Rurup et al. [59] 2005 To determine how often EAS requests are made in the absence of severe disease and how such requests are dealt with in medical practice in The Netherlands survey, interviews Nursing home physicians (n = 77), GPs (n = 125), clinical specialists (n = 208)
 Rurup et al. [70] 2005 To estimate the incidence of (compliance with) advance euthanasia directives of patients suffering from dementia in the Netherlands and to gain knowledge about the experiences of physicians survey, interviews Nursing home physicians (n = 77), GPs (n = 125), clinical specialists (n = 208)
 Vrakking et al. [85] 2005 To study the willingness of Dutch physicians to use potentially life-shortening or lethal drugs for severely ill children survey, interviews pediatricians (n = 63), GPs (n = 125), clinical specialists (n = 208)
 Rietjens et al. [94] 2006 To gain insight in thecharacteristics of a good death for the Dutch general population, and to identify whether attitudes towards euthanasia, terminal sedation and using high dosages of morphine are associated with attitudes towards a good death. survey, questionnaires members of the general public (n = 1388)
 Rurup et al. [95] 2006 To investigate the attitude of physicians, nurses and relatives towards medical end-of-life decisions concerning patients with dementia survey, questionnaires nursing home physicians (n = 107), relatives of patients with dementia (n = 136), nurses (n = 178)
 Georges et al. [66] 2007 To describe the experiences of patients who died by euthanasia or physician-assisted suicide (EAS) in the Netherlands survey, interviews relatives of patients who died by EAS (n = 87)
 Bruchem et al. [83] 2007 To describe the role of district nurses in euthanasia and physician-assisted suicide in home care organizations survey, questionnaires district nurses (n = 408) employed in homecare organizations
 Vrakking et al. [86] 2007 To gain insight into how Dutch pediatricians and other physicians treating children feel about the regulation of physician-assisted dying survey, interviews pediatricians (n = 63), GPs (n = 125), clinical specialists (n = 208)
 De Veer et al. [84] 2008 To investigate the views of nurses on their role with regard to the discussion of end-of-life decisions, as well as their actual role in the decision-making process survey, questionnaires Nurses (n = 489) involved in palliative care
 Hanssen-de Wolf et al. [63] 2008 To investigate which sources physicians use to determine whether three of the due care criteria (unbearable and hopeless suffering, and no realistic alternatives for treatment) are met. survey, questionnaires GPs (n = 3614)
 Abarshi et al. [52] 2009 To explore the relationship, if any, between EAS requests and cancer types, in relation to the provision of end-of-life care in the Netherlands Survey, questionnaires GPs (n = 3614)
 Rietjens et al. [88] 2009 To evaluate the extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge the criterion of unbearable and hopeless suffering similarly survey, questionnaires with vignettes GPs (n = 300), consultants (n = 150), members of review committees (n = 27)
 Tol et al. [87] 2010 To examine what doctors consider ‘unbearable suffering’ and for what kind of suffering they are willing to grant a euthanasia request. survey, questionnaires with vignettes GPs (n = 115)
 Ruijs et al. [48] 2013 To study symptom prevalence, the relationship between intensity of symptoms and unbearable suffering, the evolvement of symptoms and unbearability over time and quality of unbearable suffering survey, prospective, interviews end-of-life cancer patients in primary care (n = 64)
 Booij et al. [40] 2014 To investigate the presence of thoughts about or wishes for the end of life in patients with Huntington’s disease (HD) or identified gene carriers (further mentioned together as patients) survey, questionnairs patient with Huntington’s disease and identified gene carriers (n = 242)
 Brinkman-Stoppelenburg et al. [90] 2013 To study why euthanasia requests are sometimes judged not to meet the requirements of due care and to find out which characteristics are associated with the SCEN physicians’ judgments. survey, questionnaires SCEN physicians (n = 415)
 Maessen et al. [50] 2014 To determine if quality of care, symptoms of depression, disease characteristics and quality of life of patients with amyotrophic lateral sclerosis (ALS) are related to requests for euthanasia or physician-assisted suicide (EAS) and death by EAS survey, prospective, questionnaires ALS patients (n = 102)
 Ruijs et al. [49] 2014 To study the prevalence of unbearable symptoms and overall unbearable suffering in relationship to explicit requests for EAS in a cohort of end-of-life cancer patients in primary care survey, prospective, interviews end-of-life cancer patients in primary care (n = 64)
 Buiting et al. [58] 2009 To study which arguments Dutch physicians use to substantiate their adherence to the due care criteria and which aspects attract the attention of review committees’ content analysis physicians’ reports and verdicts of review committees for granted EAS cases (n = 158)
 Heest et al. [80] 2009 To reveal how often and in what way palliative sedation and euthanasia were discussed in telephone consultations with GP advisors in palliative medicine content analysis documentation forms for telephone consultations (n = 415)
 Snijdewind et al. [92] 2015 To study outcomes of requests for euthanasia or physician-assisted suicide received by the clinic and factors associated with the granting or rejecting of requests content analysis registration files of patients who applied to the End-of-Life Clinic (n = 645)
 Kim et al. [60] 2016 To describe the characteristics of patients receiving EAS for psychiatric conditions and how the practice is regulated in the Netherlands content analysis summaries of psychiatric EAS cases made available by the review committees (n = 85)
Mixed-method Studies
 van der Maas et al. [56] 1991 To present the first results of the Dutch nationwide study on euthanasia and other medical decisions concerning the end of life (MDEL). interviews, questionnaires, prospective survey Physicians (interviews and prospective survey n = 405 and 322, resp. Questionnaires: n = 5197)
 van den Boom [74] 1995 To study the relationship between AIDS, euthanasia and grief questionnaires and interviews Relatives of deceased AIDS patients (n = 60)
 Haverkate et al. [82] 2000 To determine the prevalence of EAS guidelines in Dutch nursing homes and to analyze the content. questionnaires and content analysis of guidelines Nursing home directors (n = 313), guidelines (n = 183)
 Vrakking et al. [72] 2005 To assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands death certificate study, questionnaires, interviews death certificates (n = 129), involved physicians (n = 63)
 Rurup et al. [43] 2006 To investigate the prevalence of ADs and the factors associated with the formulation of an AD in The Netherlands questionnaires, interviews members of the general public age < 60 years (n = 1051), >  60 years (n = 3107), relatives of patients who died after EAS (n = 87)
 Van der Heide et al. [62] 2007 To assess the effects of the 2002 Dutch euthanasia law and changes in end-of-life care death certificate study and questionnaires Death certificates, attending physicians (n = 6860)
 Jansen-van der Weide et al. [75] 2009 To investigate the impact of a visit from a consulting physician on patients and relatives during the euthanasia procedures in the Netherlands surveys and interviews (both questionnaire-based and in-depth) GPs (n = 3614) and relatives (n = 86)
 Onwuteaka-Philipsen et al. [93] 2010 To study which patients request euthanasia and which requests actually result in euthanasia in relation with diagnosis, care setting at the end of life, and patient demographics. death certificate study and questionnaires Death certificates, attending physicians (n = 6860)
 Buiting et al. [76] 2011 To investigate how good SCEN consultations differ from less satisfactory SCEN consultations questionnaires and qualitative interviews questionnaires: euthanasia consultants (n = 594) Interviews: euthanasia consultants (n = 14), physicians who had requested an euthanasia consultation (n = 12), relatives (n = 10)
 De Boer et al. [71] 2011 To gain insight into how ADs for euthanasia affect resident care in nursing homes questionnaires and in-depth interviews questionnaires: elderly care physicians (n = 434) Interviews: elderly care physicians (n = 11) and relatives (n = 8) of deceased dementia patients with euthanasia AD
 Van Delden et al. [42] 2011 To investigate knowledge, opinions and experiences regarding euthanasia, palliative sedation and ADs among health care professionals and members of the general public. questionnaires and in-depth interviews questionnaires: members of the general public (n = 1960), physicians (n = 793), nurses (n = 1243) Interviews: physicians (n = 49), nurses (n = 18), members of the general public (n = 16)
 Van der Heide et al. [47] 2012 To examine the practice of medical decisions at the end of life after 10 years of the Euthanasia Act, how the regulations of the Euthanasia Act are applied and which problems occur questionnaires and in-depth interviews questionnaires: physicians (n = 2000) interviews: physicians (n = 30, 22/30 GPs), relatives of patients who died of EAS (n = 25)
 Onwuteaka-Philipsen et al. [7] 2017 To determine whether the Euthanasia Act reaches its aims survey and in-depth interviews questionnaires: physicians (n = 2500), members of the general public (n = 2500) interviews: psychiatrists (n = 17)
 Bolt et al. [73] 2017 To explore the situations in which pediatricians found PAD conceivable and to describe the roles of the patient and parents, the patient’s age and their life expectancy survey and in-depth interviews pediatricians (n = 276 and n = 8)
  1. Abbreviations: GP general practitioner, EAS euthanasia or assisted suicide, AD advance directive, SCEN support and consultation euthanasia Netherlands