Table 2.
Main characteristics of the included studies
| 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) |
Abbreviations: GP general practitioner, EAS euthanasia or assisted suicide, AD advance directive, SCEN support and consultation euthanasia Netherlands