Euthanasia and Assisted Suicide of Persons With Dementia in the Netherlands
Open accessAbstract
Objective To describe the characteristics of persons with dementia receiving euthanasia/assisted suicide (EAS) and how the practice is regulated in the Netherlands. Designs Qualitative directed content analysis of dementia EAS reports published by the Dutch euthanasia review committees between 2011 and October 5, 2018. Results 75 cases were reviewed: 59 concurrent requests and 16 advance requests. 53% (40/75) percent were women, and 48% (36/75) had Alzheimer’s disease. Advance request EAS patients were younger, had dementia longer, and more frequently had personal experience with dementia. Some concurrent request EAS patients were quite impaired: 15% (9/59) were deemed incompetent by at least one physician; in 24% (14/59) patients’ previous statements or current body language were used to assess competence. In 39% (29/75), patients’ own physicians declined to perform EAS; in 43% (32/75) the physician performing EAS was new to them. Physicians disagreed about patients’ eligibility in 21% (16/75). All advance request and 14 (25%) concurrent request patients had an advance euthanasia directive but the conditions of applicability often lacked specificity. In 5 of 16 advance request EAS and 2 of 56 concurrent request EAS cases, EAS procedure was modified (e.g., premedication). 25% (4/16) of advance request cases did not meet legal due care criteria, in particular the ‘unbearable suffering’ criterion. Conclusions Advance and concurrent request EAS cases differ in age, duration of illness, and past experience. Advance request EAS cases were complicated by ambiguous directives, patients being unaware of the EAS procedure, and physicians’ difficulty assessing ‘unbearable suffering.’ Notably, some concurrent request patients were quite impaired yet deemed competent by appeals to previous statements.
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Written from the paper’s full text.
TL;DR
This qualitative review of 75 Dutch dementia euthanasia/assisted suicide (EAS) cases found that advance-request and concurrent-request cases differed in age, illness duration, and prior dementia experience, while the practical boundary between the two request types was blurred. Some concurrent-request patients were significantly impaired yet deemed competent through prior statements or body language, and advance-request cases were complicated by ambiguous directives and difficulty assessing unbearable suffering.
Key findings
- Of 75 reviewed cases, 59 were concurrent requests and 16 were advance requests; 53% (40/75) were women and 48% (36/75) had Alzheimer’s disease. Advance-request patients were younger (44% aged 70+ vs. 86% of concurrent-request patients), had dementia longer before EAS (5.3 vs. 2.3 years), and more often had personal experience with dementia (81% vs. 44%).
- In 39% (29/75) of cases, EAS was performed after at least one doctor refused; in 43% (32/75) the EAS physician was new to the patient; physicians disagreed about eligibility in 21% (16/75).
- Among concurrent-request cases, 15% (9/59) were deemed incompetent by at least one physician, and in 24% (14/59) previous statements or current body language were used to assess competence.
- In advance-request cases, 25% (4/16) did not meet legal due care criteria, particularly the “unbearable suffering” criterion; EAS procedure was modified in 5 of 16 advance-request and 2 of 56 concurrent-request cases (e.g., premedication).
Methods
- Qualitative directed content analysis of all 75 dementia EAS reports published by the Dutch regional euthanasia review committees (RTE) between 2011 and October 5, 2018: 72 cases from the RTE website’s “dementia” search plus 3 additional cases identified by the Canadian Council of Academies’ Expert Panel Working Group.
- Reports were machine-translated, with 20 complex cases translated by certified medical translators and the remaining 55 edited by Dutch-speaking academics; nine abbreviated official English translations served as validity checks.
- Cases were coded independently by two authors, with discrepancies resolved by discussion; data were analyzed in STATA 15 using frequencies, cross-tabulations, and exploratory post-hoc bivariate tests.
Limitations
- Stated in the paper: possible translation-related limitations; the RTE does not publish all dementia EAS cases, limiting generalizability; only completed EAS cases were studied; qualitative coding requires interpretive judgment; statistical tests were post-hoc with a small sample and should be interpreted cautiously.
- Evident from the text: the analysis relies on RTE published reports and physician self-reports rather than independent clinical assessment, and the retrospective oversight system depends on self-reports by physicians involved in the EAS process.
Model-written summary. Check it against the paper before relying on it.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
0 of 53 cited sources checked · 0 supported · 0 flagged
- Findingown data
In 15% (9/59) of concurrent request EAS cases, at least one physician considered the patient incompetent.
“15% (9/59) were deemed incompetent by at least one physician”
- Also stated in: § Evaluations of Concurrent Requests for EAS in Dementia · plain
“In 15% (9/59) of concurrent request cases, the patient was viewed as incompetent to request EAS by a physician at some point”
Quote in the paperNot a substantial claim - Also stated in: § Evaluations of Concurrent Requests for EAS in Dementia · plain
- Findingown data
In 39% (29/75) of cases, the patient's own physician declined to perform EAS.
“In 39% (29/75), patients’ own physicians declined to perform EAS”
- Also stated in: § EAS Refusals by Physicians · plain
“In 39% (29/75) of cases, EAS was performed after at least one doctor refused”
Quote in the paperNot a substantial claim - Also stated in: § EAS Refusals by Physicians · plain
- Findingown data
Women made up 53% (40/75) of the dementia EAS cases.
“53% (40/75) percent were women”
- Also stated in: § Characteristics of Patients · plain
“Fifty-three percent (40/75) were women”
Quote in the paperNot a substantial claim - Also stated in: § Characteristics of Patients · plain
- Findingown data
Alzheimer's disease was the most frequent dementia diagnosis in both concurrent and advance request cases.
“Alzheimer’s disease was the most common dementia diagnosis in both concurrent and advance request cases”
Quote in the paperNot a substantial claim - Findingown data
Advance request EAS patients had dementia for a longer time before receiving EAS than concurrent request patients.
“had dementia longer”
- Also stated in: § Characteristics of Patients · plain
“Advance request patients had dementia diagnoses longer before receiving EAS [5.3 (SD 3.2) years v. 2.3 (SD 1.8) years, p=0.002, t-test]”
Quote in the paperNot a substantial claim - Also stated in: § Characteristics of Patients · plain
- Findingown data
Alzheimer's disease was the sole dementia diagnosis in 48% (36/75) of cases.
“48% (36/75) had Alzheimer’s disease.”
- Also stated in: § Characteristics of Patients · plain
“the sole dementia diagnosis in 48% (36/75).”
Quote in the paperNot a substantial claim - Also stated in: § Characteristics of Patients · plain
- Findingown data
Advance request EAS patients were younger than concurrent request EAS patients.
“Advance request EAS patients were younger”
- Also stated in: § Characteristics of Patients · plain
“Concurrent request patients were 70 or older more frequently than advance request patients [86% (51/59) vs. 44% (7/16), p=0.001, Fisher’s exact test].”
Quote in the paperNot a substantial claim - Also stated in: § Characteristics of Patients · plain
- Findingown data
In 24% (14/59) of concurrent request EAS cases, previous statements or current body language were used to assess competence.
“in 24% (14/59) patients’ previous statements or current body language were used to assess competence.”
Quote in the paperNot a substantial claim - Findingown data
Advance request EAS patients more often had personal experience with dementia than concurrent request patients.
“more frequently had personal experience with dementia”
- Also stated in: § Characteristics of Patients · plain
“were more likely to have prior personal experiences with dementia (usually in relatives) [81% (13/16) v. 44%, (26/59) p=0.01, Fisher’s exact test]”
Quote in the paperNot a substantial claim - Also stated in: § Characteristics of Patients · plain
- Findingown data
Fear of nursing home admission was common (69%) in both groups.
“Fear of nursing home admission was common (69%) in both groups.”
Quote in the paperNot a substantial claim - Findingown data
The number and types of consultation and second opinion physicians involved in EAS evaluations were similar between concurrent and advance request cases.
“The number and types of consultation and second opinion physicians involved in EAS evaluations were similar between concurrent and advance request cases.”
Quote in the paperNot a substantial claim - Findingown data
In some concurrent request cases where the patient was viewed as incompetent, the patient's past conversations were used to confirm competence to request EAS.
“In some of these cases, the patient’s past conversations were used to confirm competence to request EAS.”
Quote in the paperNot a substantial claim - Findingown data
The RTE asked physicians for additional information about the EAS evaluation and implementation in advance request cases more frequently than in concurrent request cases.
“The RTE asked physicians for additional information (in writing or interviews), about the EAS evaluation and implementation in advance request cases more frequently than in concurrent request cases [75% (12/16) v. 41% (24/59), p=.02, Fisher’s exact test].”
Quote in the paperNot a substantial claim - Findingown data
In 75% (12/16) of advance request cases, a physician was involved with preparation of the advance euthanasia directive.
“In 75% (12/16) of advance request cases, a physician was involved with its preparation”
Quote in the paperNot a substantial claim - Findingown data
Advance request cases were more likely to involve second opinions from geriatricians than concurrent request cases.
“Advance request cases were more likely to involve second opinions from geriatricians [75% (12/16) v. 31% (18/59), p=0.007, Fisher’s exact test].”
Quote in the paperNot a substantial claim - Findingown data
42% (15/36) of reasons for physician refusal had to do with particulars of the case.
“Although 42% (15/36) of reasons had to do with particulars of the case (e.g., did not think due care criteria were met)”
Quote in the paperNot a substantial claim - Findingown data
Disease severity and degree of physical and cognitive functioning in concurrent request patients varied.
“Disease severity and degree of physical and cognitive functioning in concurrent request patients varied.”
Quote in the paperNot a substantial claim - Findingown data
Admission to a nursing home or institution was the most common trigger criterion, mentioned in 43% (13/30) of reports.
“admission to a nursing home/institution was the most common [43% (13/30)].”
Quote in the paperNot a substantial claim - Findingown data
Among concurrent request patients, unspecified dementia was the second most common diagnosis.
“Among concurrent request patients, unspecified dementia was the second most common diagnosis [24% (14/59)].”
Quote in the paperNot a substantial claim - Findingown data
Twelve percent (7/59) of concurrent request cases involved ambiguous requests that required physicians to interpret phrases, gestures, or both.
“Twelve percent (7/59) of concurrent request cases involved ambiguous requests that required physicians to interpret phrases, gestures, or both”
Quote in the paperNot a substantial claim - Findingown data
End-of-Life Clinic physicians accounted for 36% (27/75) of cases.
“The End-of-Life Clinic (Box) physicians accounted for 36% (27/75) of cases.”
Quote in the paperNot a substantial claim - Findingown data
Concurrent request cases more frequently mentioned that fear of the future contributed to the patient's unbearable suffering than advance request cases.
“Concurrent request cases more frequently mentioned that a fear of the future contributed to the patient’s unbearable suffering (e.g., “The core of the [patient’s] suffering was formed by the realization that she would eventually become dependent.” 2012–29) [83% (49/59) v. 31% (5/16), p<0.001, Fisher’s exact test].”
Quote in the paperNot a substantial claim - Findingown data
Fourteen percent (8/59) of concurrent request cases involved patients putting requests on hold temporarily at least once.
“Fourteen percent (8/59) of concurrent request cases involved patients putting requests on hold temporarily at least once.”
Quote in the paperNot a substantial claim - Findingown data
33% (12/36) of reasons for physician refusal reflected the doctors' own reasons.
“33% (12/36) reflected the doctors’ own reasons including not providing EAS for some or all types of requests, personal/emotional reasons, or in one case (2014–63) having “euthanasia fatigue.””
Quote in the paperNot a substantial claim - Findingown data
In five cases, more than one physician refused to perform EAS.
“In five, more than one physician refused.”
Quote in the paperNot a substantial claim - Findingnone given
One or more of these elements were present in 18 of 59 (31%) distinct concurrent request cases.
“One or more of these elements were present in 18 of 59 (31%) distinct concurrent request cases.”
Quote in the paperSubstantial claim - Findingown data
Physicians disagreed about patients' eligibility for EAS in 21% (16/75) of cases.
“Physicians disagreed about patients’ eligibility in 21% (16/75).”
- Also stated in: § Physician Roles in the EAS Evaluation process · plain
“EAS physicians, consultants, or second opinion physicians disagreed about the patients’ eligibility for EAS in 31% (5/16) of advance request and 19% (11/59) of concurrent request cases”
Quote in the paperNot a substantial claim - Also stated in: § Physician Roles in the EAS Evaluation process · plain
- Findingown data
An update after initial creation of the advance euthanasia directive was described in 57% (17/30) of cases.
“An update after initial creation of the advance euthanasia directive was described in 57% (17/30).”
Quote in the paperNot a substantial claim - Findingown data
Concurrent request patients were 70 or older more frequently than advance request patients.
“Concurrent request patients were 70 or older more frequently than advance request patients [86% (51/59) vs. 44% (7/16), p=0.001, Fisher’s exact test].”
Quote in the paperNot a substantial claim - Findingown data
Patient body language played a role in the evaluation of 12% (7/59) of concurrent request cases.
“Patient body language played a role in the evaluation of 12% (7/59) of concurrent request cases”
Quote in the paperNot a substantial claim - Findingown data
25% (4/16) of advance request EAS cases did not meet legal due care criteria, especially the unbearable suffering criterion.
“25% (4/16) of advance request cases did not meet legal due care criteria, in particular the ‘unbearable suffering’ criterion.”
- Also stated in: § Reviews by the Regional Euthanasia Review Committee (RTE) · plain
“The RTE judged that due care criteria were not met in 3 concurrent and 4 advance request cases”
Quote in the paperSubstantial claim - Also stated in: § Reviews by the Regional Euthanasia Review Committee (RTE) · plain
- Findingown data
80% (24/30) of reports mentioned at least one trigger criterion for EAS.
“Eighty percent (24/30) of reports mentioned at least one such criterion”
Quote in the paperNot a substantial claim - Findingown data
In 43% (32/75) of cases, the physician who performed EAS was new to the patient.
“in 43% (32/75) the physician performing EAS was new to them.”
- Also stated in: § Physician Roles in the EAS Evaluation process · plain
“The EAS physician (i.e., physician who performed EAS) was new to the patient in 43% (32/75)”
Quote in the paperNot a substantial claim - Also stated in: § Physician Roles in the EAS Evaluation process · plain
- Findingown data
Physicians reported high degrees of functioning in some concurrent request patients.
“Physicians reported high degrees of functioning in some patients.”
Quote in the paperNot a substantial claim - Findingown data
The RTE judged that due care criteria were not met in 3 concurrent and 4 advance request cases.
“The RTE judged that due care criteria were not met in 3 concurrent and 4 advance request cases (Table 5).”
Quote in the paperNot a substantial claim - Findingown data
The conditions of applicability in advance euthanasia directives often lacked specificity.
“but the conditions of applicability often lacked specificity.”
- Also stated in: § DISCUSSION · hedged
“advance euthanasia directives often included trigger criteria that could make their implementation difficult”
Quote in the paperSubstantial claim - Also stated in: § DISCUSSION · hedged
- Findingown data
Physicians or the RTE appealed to advance euthanasia directives when assessing the voluntary and well considered request criterion in 15% (9/59) of concurrent request cases.
“However, physicians or the RTE appealed to advance euthanasia directives when assessing the voluntary and well considered request criterion in 15% (9/59) of concurrent request cases as well.”
Quote in the paperNot a substantial claim - Findingown data
Advance euthanasia directives often included trigger criteria that could make their implementation difficult, such as losing dignity.
“Our results also show that advance euthanasia directives often included trigger criteria that could make their implementation difficult, such as “losing her dignity.””
Quote in the paperSubstantial claim - Interpretationown data
Advance request patients were willing to live to reach more advanced stages of their disease.
“advance request patients were willing to live to reach more advanced stages of their disease.”
Quote in the paperSubstantial claim - Premisecitation
The RTE received 834 dementia EAS notifications between 2011 and 2018.
“The RTE received 834 dementia EAS notifications between 2011 and 2018.(3–6, 17, 19–21)”
Quote in the paperNot a substantial claim0 of 8 sources checked- cites [3] Regional Euthanasia Review Committees: Annual report 2012, The Hague, 2013
Not checked in the free run.
- cites [4] Regional Euthanasia Review Committees: Annual report 2017, The Hague, 2018
Not checked in the free run.
- cites [5] Regionale Toetsingscommissies Euthanasie: Jaarverslag 2018, The Hague, 2019
Not checked in the free run.
- cites [6] Regional Euthanasia Review Committees: Annual report 2011, The Hague, 2012
Not checked in the free run.
- cites [17] Regional Euthanasia Review Committees: Annual report 2015, The Hague, 2016
Not checked in the free run.
- cites [19] Regional Euthanasia Review Committees: Annual report 2013, The Hague, 2014
Not checked in the free run.
- cites [20] Regional Euthanasia Review Committees: Annual report 2014, The Hague, 2015
Not checked in the free run.
- cites [21] Regional Euthanasia Review Committees: Annual report 2016, The Hague, 2017
Not checked in the free run.
- Interpretationreasoning
Advance request EAS cases were complicated by physicians' difficulty assessing unbearable suffering.
“physicians’ difficulty assessing ‘unbearable suffering.’”
- Also stated in: § DISCUSSION · plain
“doctors struggled with this criterion”
Quote in the paperSubstantial claim - Also stated in: § DISCUSSION · plain
- Interpretationreasoning
Some Dutch physicians and the RTE apply the competence requirement in a novel way.
“These observations reflect the fact that some Dutch physicians and the RTE apply the competence requirement in a novel way.”
Quote in the paperSubstantial claim - Interpretationnone given
Advance request EAS cases were complicated by ambiguous directives.
“Advance request EAS cases were complicated by ambiguous directives”
Quote in the paperSubstantial claim - Premisecitation
Beginning in 2011, a small number of Dutch EAS requests based on written advance euthanasia directives have been granted.
“However, beginning in 2011, a small number of Dutch EAS requests based on written advance euthanasia directives have been granted.(4)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [4] Regional Euthanasia Review Committees: Annual report 2017, The Hague, 2018
Not checked in the free run.
- Interpretationown data
Some concurrent request patients were quite impaired yet were deemed competent by appeals to previous statements.
“Notably, some concurrent request patients were quite impaired yet deemed competent by appeals to previous statements.”
Quote in the paperSubstantial claim - Premisecitation
Most Dutch dementia EAS cases were reported as concurrent requests by patients deemed competent in the early phases of dementia.
“Most cases were reported as concurrent requests for EAS by patients deemed competent in the ‘early phases of dementia.’(4)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [4] Regional Euthanasia Review Committees: Annual report 2017, The Hague, 2018
Not checked in the free run.
- Interpretationown data
Advance request EAS cases were complicated by patients being unaware of the EAS procedure.
“patients being unaware of the EAS procedure”
- Also stated in: § EAS Implementation procedure · hedged
“patients were sometimes unaware that EAS was to be performed”
Quote in the paperSubstantial claim - Also stated in: § EAS Implementation procedure · hedged
- Interpretationown data
Although conceptually and legally there is a sharp boundary between advance and concurrent requests for EAS, in practice the boundary is not so clear.
“although conceptually and legally there is a sharp boundary between advance and concurrent requests for EAS, in practice the boundary is not so clear.”
Quote in the paperSubstantial claim - Interpretationreasoning
Evidence typically used to guide surrogate decision-making is used to assess competence in Dutch concurrent request EAS cases, a potentially confusing practice.
“Thus, evidence (e.g., previously stated wishes) that is typically used to guide surrogate decision-making is used to assess competence, a potentially confusing practice that may account for why some physicians appear to state that a patient is not competent in one sense (by functional criteria) but is competent in another sense (based on previous statements).”
Quote in the paperSubstantial claim - Interpretationcitation
Key points of debate regarding advance requests-including difficulties interpreting advance euthanasia directives, assessing unbearable suffering, and implementing the EAS procedure-are indeed problems that arise in advance request EAS.
“It also appears that key points of debate regarding advance requests(11–16)—including difficulties interpreting advance euthanasia directives, assessing unbearable suffering, and implementing the EAS procedure—are indeed problems that arise in advance request EAS.”
Quote in the paperSubstantial claim0 of 6 sources checked- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
- cites [12] Dresser, 2018, Advance directives and discrimination against people with dementia, Hastings Cent Rep source
Not checked in the free run.
- cites [13] van Delden, 2004, The unfeasibility of requests for euthanasia in advance directives, J Med Ethics source
Not checked in the free run.
- cites [14] Council of Canadian Academies: The state of knowledge on advance requests for medical assistance in dying, Ottawa (ON), 2018
Not checked in the free run.
- cites [15] Menzel, 2013, Advance directives, dementia, and physician-assisted death, J Law Med Ethics source
Not checked in the free run.
- cites [16] de Boer, 2010, Advance directives in dementia: issues of validity and effectiveness, Int Psychogeriatr source
Not checked in the free run.
- Interpretationreasoning
Significant functional impairment and incompetence in all other decision-making domains is compatible with being seen as competent to request EAS.
“Either way, a significant degree of functional impairment (e.g., not meeting the “Appelbaum criteria” 2016–39) and incompetence in all other decision-making domains (e.g. 2013–96) is compatible with being seen as competent to request EAS.”
Quote in the paperSubstantial claim - Premisecitation
In practice, the RTE accepts that patients can be competent even when they are unable to present supporting arguments for their request.
“But in practice the RTE accepts that patients can be competent even when they are “unable to present supporting arguments” for their request.(11)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
- Premisecitation
The research literature shows consistently that persons even in early stages of dementia are, based on a functional model of capacity, very often or usually incompetent to consent to treatment, to research, or to write an advance treatment directive.
“the research literature that shows consistently that persons even in early stages of dementia are, based on a functional model of capacity, very often or usually incompetent to consent to treatment,(30) to research, (31) or to write an advance treatment directive.(32)”
Quote in the paperSubstantial claim0 of 3 sources checked- cites [30] Marson, 1995, Assessing the competency of patients with Alzheimer's disease under different legal standards, Arch Neurol source
Not checked in the free run.
- cites [31] Warner, 2008, Participation in dementia research: rates and correlates of capacity to give informed consent, J Med Ethics source
Not checked in the free run.
- cites [32] Fazel, 1999, Assessment of competence to complete advance directives: validation of a patient centred approach, BMJ source
Not checked in the free run.
- Interpretationreasoning
The assessment of capacity in dementia EAS is not the usual application of the functional model of decision-making capacity.
“Thus, the assessment of capacity in dementia EAS is not the usual application of the functional model of decision-making capacity.”
Quote in the paperSubstantial claim - Interpretationcitation
The sense of authenticity employed in Dutch concurrent request EAS cases seems to be the sense normally sought in surrogate decision-making after a person has lost decision-making capacity.
“The sense of authenticity employed in Dutch concurrent request EAS cases seems to be in its second sense, namely, authenticity that is normally sought in surrogate decision-making after a person has lost decision-making capacity.(34)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [34] Brudney, 2009, Beyond autonomy and best interests, Hastings Cent Rep source
Not checked in the free run.
- Premisecitation
Dutch physicians find it difficult to determine whether an incompetent person experiences her dementia as unbearable and hopeless suffering.
“studies that report Dutch physicians find it difficult to determine whether an incompetent person experiences her dementia as unbearable and hopeless suffering.(24, 27)”
Quote in the paperSubstantial claim0 of 2 sources checked- cites [24] de Boer, 2010, Advance directives for euthanasia in dementia: do law-based opportunities lead to more euthanasia?, Health Policy source
Not checked in the free run.
- cites [27] Kouwenhoven, 2015, Opinions about euthanasia and advanced dementia: a qualitative study among Dutch physicians and members of the general public, BMC Med Ethics source
Not checked in the free run.
- Study design and conductnone given
Only completed EAS cases were studied.
“Additionally, only completed EAS cases were studied.”
Quote in the paperSubstantial claim - Premisecitation
The RTE condones the use of premedication, noting that it must be assessed in each specific case taking into account the particular circumstances.
“the RTE condones the use of premedication, noting that it “must be assessed in each specific case, taking into account the particular circumstances of that case…”(11)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
- Interpretationreasoning
The retrospective oversight system relies on self-reports by physicians involved in the EAS process.
“a reminder that the retrospective oversight system relies on self-reports by physicians involved in the EAS process.”
Quote in the paperNot a substantial claim
- May combine two claims. 23
- Classified as probably not a substantial claim. 16
May combine two claims.
Findingown dataThe review covered 75 dementia EAS cases, made up of 59 concurrent requests and 16 advance requests.
“75 cases were reviewed: 59 concurrent requests and 16 advance requests.”
- Also stated in: § METHODS · plain
“for a total of 75 cases.”
Quote in the paperSubstantial claim- Also stated in: § METHODS · plain
May combine two claims.
Findingown dataAll four advance request cases that failed due care criteria failed at least one eligibility criterion, while concurrent request cases failed only procedural criteria.
“All four advance request cases failed at least one eligibility criteria; concurrent request cases failed only the procedural criteria.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe EAS procedure was modified in 5 of 16 advance request cases and 2 of 56 concurrent request cases.
“In 5 of 16 advance request EAS and 2 of 56 concurrent request EAS cases, EAS procedure was modified (e.g., premedication).”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataApproximately half of the reports mentioned personality characteristics of patients.
“Approximately half of the reports mentioned personality characteristics of patients”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataAll advance request patients and 14 (25%) concurrent request patients had an advance euthanasia directive.
“All advance request and 14 (25%) concurrent request patients had an advance euthanasia directive”
- Also stated in: § Characteristics and Uses of Advance Euthanasia Directives · plain
“Forty percent (30/75) of patients had an advance euthanasia directive”
Quote in the paperNot a substantial claim- Also stated in: § Characteristics and Uses of Advance Euthanasia Directives · plain
May combine two claims.
Findingown dataIn advance request cases without modifications, patients were sometimes unaware that EAS was to be performed or their awareness was unclear.
“In advance request cases without modifications, patients were sometimes unaware that EAS was to be performed (e.g., “The patient was not conscious that euthanasia was being performed” 2012–8) or their awareness was unclear (e.g., “It was not totally clear whether [the] patient…was aware of what was about to happen” 2016–38).”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
FindingreasoningThree of the four advance request EAS due care not met cases did not meet the unbearable suffering due care criterion.
“Perhaps this explains why three of the four advance request EAS due care not met cases did not meet the unbearable suffering due care criterion.”
Quote in the paperNot a substantial claimClassified as probably not a substantial claim.
FindingcitationIn case 2014-02, the RTE notes that the mere fact of a nursing home admission is insufficient to meet the unbearable suffering criterion.
“In case 2014–02, the RTE notes that the mere fact of a nursing home admission is insufficient to meet the unbearable suffering criterion.”
Quote in the paperSubstantial claimMay combine two claims.
FindingcitationOnly a minority of advance euthanasia directives involved physicians at the preparation stage, consistent with other Dutch data.
“This may reflect the fact that only a minority of advance euthanasia directives involved physicians at the preparation stage, consistent with other Dutch data on physician involvement in advance euthanasia directive preparation.(35)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [35] Raijmakers, 2013, Involvement of the Dutch general population in advance care planning: a cross-sectional survey, J Palliat Med source
Not checked in the free run.
Classified as probably not a substantial claim. May combine two claims.
Study design and conductown dataTranslation accuracy was supported by certified medical translators for 20 complex cases, editing by Dutch-speaking academics for the remaining 55, and validity checks against nine abbreviated official RTE English translations.
“Twenty cases with complex histories were then translated into English by certified medical translators through the National Institutes of Health Library’s translation services. The remaining 55 cases were edited for accuracy by Dutch-speaking academics (RDV or MN).”
- Also stated in: § METHODS · plain
“Nine cases had abbreviated official RTE English translations (along with full length Dutch reports), which served as validity checks of our full-length English translations.”
Quote in the paperSubstantial claim- Also stated in: § METHODS · plain
May combine two claims.
PremisecitationThe RTE sometimes uses the terms 'early' and 'advanced' dementia as almost synonymous with concurrent and advance request cases, but concurrent request patients can have significant impairments.
“the RTE sometimes uses the terms ‘early’ and ‘advanced’ dementia as almost synonymous with concurrent and advance request cases,(4, 11) but concurrent request patients can have significant impairments.”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites [4] Regional Euthanasia Review Committees: Annual report 2017, The Hague, 2018
Not checked in the free run.
- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
May combine two claims.
PremisecitationSome advance request EAS cases have been widely discussed, and one case led to the first prosecution of a doctor since the 2002 law was enacted.
“Some of these advance request EAS cases have been widely discussed(4, 7–10) and one case led to the first prosecution of a doctor since the 2002 law was enacted (Box).(5)”
Quote in the paperNot a substantial claim0 of 6 sources checked- cites [4] Regional Euthanasia Review Committees: Annual report 2017, The Hague, 2018
Not checked in the free run.
- cites [7] Hertogh CMPM, Slaets J, Zuidema S, et al: Nee, niet heimelijk euthanasie plegen [NRC Online]. 2017. Available at:https://www.nrc.nl/nieuws/2017/02/14/nee-niet-heimelijk-euthanasie-plegen-6698665-a1546043
Not checked in the free run.
- cites [8] Miller, 2019, Advance euthanasia directives: a controversial case and its ethical implications, J Med Ethics source
Not checked in the free run.
- cites [9] Effting M: En opeens was het moment voorbij [Volkskrant Online]. 2017. Available at: https://www.volkskrant.nl/wetenschap/en-opeens-was-het-moment-voorbij∼b881fc6c/
Not checked in the free run.
- cites [10] van Steenbergen E, Ritzen G: Artsen: dementerenden kunnen te eenvoudig euthanasie krijgen [NRC Online]. 2017. Available at:https://www.nrc.nl/nieuws/2017/02/09/artsen-tegen-euthanaseren-van-dementen-op-basis-van-wilsverklaring-a1545325
Not checked in the free run.
- cites [5] Regionale Toetsingscommissies Euthanasie: Jaarverslag 2018, The Hague, 2019
Not checked in the free run.
Classified as probably not a substantial claim.
PremisecitationMuch of the debate about dementia EAS focuses on challenges in determining decisional capacity, evaluating an advance euthanasia directive's applicability, assessing unbearable suffering, and implementing the EAS procedure in advance request cases.
“Much of the debate about dementia EAS focuses on challenges in determining decisional capacity, evaluating an advance euthanasia directive’s applicability, assessing unbearable suffering, and implementing the EAS procedure in advance request cases.(2, 11–16)”
Quote in the paperSubstantial claim0 of 7 sources checked- cites [2] Gastmans C: Euthanasia in Persons With Severe Dementia, in Euthanasia and Assisted Suicide: Lessons From Belgium. Edited by MacKellar C, Gastmans C, Jones DA. Cambridge, Cambridge University Press, 2017; 188–201 source
Not checked in the free run.
- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
- cites [12] Dresser, 2018, Advance directives and discrimination against people with dementia, Hastings Cent Rep source
Not checked in the free run.
- cites [13] van Delden, 2004, The unfeasibility of requests for euthanasia in advance directives, J Med Ethics source
Not checked in the free run.
- cites [14] Council of Canadian Academies: The state of knowledge on advance requests for medical assistance in dying, Ottawa (ON), 2018
Not checked in the free run.
- cites [15] Menzel, 2013, Advance directives, dementia, and physician-assisted death, J Law Med Ethics source
Not checked in the free run.
- cites [16] de Boer, 2010, Advance directives in dementia: issues of validity and effectiveness, Int Psychogeriatr source
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationIn some jurisdictions, the practice includes an increasing number of persons with dementia.
“in some, the practice includes an increasing number of persons with dementia.(2–4)”
Quote in the paperNot a substantial claim0 of 3 sources checked- cites [2] Gastmans C: Euthanasia in Persons With Severe Dementia, in Euthanasia and Assisted Suicide: Lessons From Belgium. Edited by MacKellar C, Gastmans C, Jones DA. Cambridge, Cambridge University Press, 2017; 188–201 source
Not checked in the free run.
- cites [3] Regional Euthanasia Review Committees: Annual report 2012, The Hague, 2013
Not checked in the free run.
- cites [4] Regional Euthanasia Review Committees: Annual report 2017, The Hague, 2018
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductown dataAll cases were coded independently by two coders, with discrepancies resolved by discussion and sometimes an additional reader.
“All cases were coded independently by DM and SK; any discrepancies were resolved by discussion and sometimes involved an additional reader (MN).”
Quote in the paperNot a substantial claimClassified as probably not a substantial claim.
Study design and conductnone givenThe RTE's designation of cases as concurrent or advance request was verified by contacting the RTE directly.
“The RTE’s designation of cases as concurrent or advance request was verified by contacting the RTE directly.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationEAS is permitted in a small number of jurisdictions.
“Euthanasia or assisted suicide (EAS) is permitted in a small number of jurisdictions,(1)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [1] Griffiths, 2008
Not checked in the free run.
May combine two claims.
PremisecitationAlthough dementia EAS is a small percentage of all Dutch EAS cases, the number has more than tripled since 2011.
“Although EAS of persons with dementia (dementia EAS) constitutes a small percentage of all Dutch EAS cases, the number has more than tripled since 2011.(5, 6)”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites [5] Regionale Toetsingscommissies Euthanasie: Jaarverslag 2018, The Hague, 2019
Not checked in the free run.
- cites [6] Regional Euthanasia Review Committees: Annual report 2011, The Hague, 2012
Not checked in the free run.
May combine two claims.
InterpretationreasoningThe advanced condition of some concurrent request patients likely explains why some were viewed as incompetent by at least one physician and why physicians sometimes used advance euthanasia directives or cited body language to aid in determining competence.
“The advanced condition of some concurrent request patients likely explains why some were viewed as incompetent by at least one physician and why physicians sometimes used advance euthanasia directives or cited body language to aid in determining competence.”
Quote in the paperSubstantial claimMay combine two claims.
Interpretationown dataAdvance and concurrent request EAS cases differ in age, duration of illness, and past experience.
“Advance and concurrent request EAS cases differ in age, duration of illness, and past experience.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductreasoningTranslation-related limitations may exist.
“although we used professional medical translations or translations vetted by Dutch-speaking academics, there may be translation-related limitations.”
Quote in the paperNot a substantial claimMay combine two claims.
PremisecitationThe RTE emphasizes that physicians should keep meticulous records of any alterations so they can be assessed, yet some physicians may not do this.
“The RTE emphasizes that physicians should keep “meticulous records” of any alterations so they can be assessed(11) yet some physicians may not do this (e.g., 2016–38),(9)”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
- cites [9] Effting M: En opeens was het moment voorbij [Volkskrant Online]. 2017. Available at: https://www.volkskrant.nl/wetenschap/en-opeens-was-het-moment-voorbij∼b881fc6c/
Not checked in the free run.
May combine two claims.
Interpretationown dataThe dividing line between advance and concurrent request cases in Dutch dementia EAS practice is not clear and is not where one might expect if a strictly functional model of decision-making capacity were used.
“Our most novel finding is that the dividing line between advance and concurrent request cases in Dutch dementia EAS practice is not clear and is not where one might expect if a strictly functional model of decision-making capacity were used.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationThe RTEs intend the published cases to serve educational, precedent setting functions.
“we note that the RTEs intend the published cases to serve educational, precedent setting functions,(20)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [20] Regional Euthanasia Review Committees: Annual report 2014, The Hague, 2015
Not checked in the free run.
Classified as probably not a substantial claim.
PremisecitationThe RTE recommends that utterances a patient can still make can be assessed together with earlier oral or written directives and the patient's behaviour or signals.
“In such cases, the RTE recommends that “the utterances the patient is still able to make at that point can be assessed in conjunction with earlier oral or written directives, and the patient’s behaviour or signals.”(11)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
May combine two claims.
Study design and conductnone givenThe RTE does not publish all dementia EAS cases, limiting generalizability.
“the RTE does not publish all dementia EAS cases, limiting generalizability.”
Quote in the paperNot a substantial claimMay combine two claims.
PremisecitationEven when a clearer trigger criterion is met, advance euthanasia directives only speak to the voluntary and well considered criterion and physicians must still assess the patient's unbearable suffering.
“Even when a clearer trigger criterion (e.g., admission to a nursing home) is met, advance euthanasia directives only speak to the voluntary and well considered criterion and the physicians must still assess the patient’s unbearable suffering.(11)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
May combine two claims.
Interpretationown dataConcurrent request patients are older, less likely to have had experience with dementia, and more likely to state as present suffering their anticipation of future deterioration.
“Our study shows that concurrent request patients are older, less likely to have had experience with dementia, and more likely to state as present suffering their anticipation of future deterioration.”
Quote in the paperSubstantial claimMay combine two claims.
InterpretationreasoningAlmost a third of advance request cases involved procedural modifications, possibly because of patients' unawareness or negative responses.
“This may be why almost a third of advance request cases involved procedural modifications—e.g., using premedication to prevent “unpredictable behavior” in a patient who “could have…injured herself”(2018–41).”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).
Study design and conductnone givenQualitative coding requires judgement in interpretation.
“Third, qualitative coding requires judgement in interpretation.”
Quote in the paperNot a substantial claimMay combine two claims.
Interpretationown dataMost advance euthanasia directives used in advance request cases (75%) had physician involvement at the preparation stage, suggesting that EAS evaluators are more likely to adhere to an advance euthanasia directive if it has been discussed with a physician prior to its implementation.
“However, it was notable that most advance euthanasia directives used in advance request cases (75%) had physician involvement at the preparation stage, suggesting that EAS evaluators are more likely to adhere to an advance euthanasia directive if it has been discussed with a physician prior to its implementation.”
Quote in the paperSubstantial claimClassified as probably not a substantial claim.
PremisecitationIn theory, competence requires that one have the functional abilities to understand relevant information, consider alternatives, and assess the implications of his decision.
“in theory competence requires that one have the functional abilities “…to understand relevant information … consider any alternatives and assess the implications of his decision.”(11)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
Classified as probably not a substantial claim. May combine two claims.
PremisecitationThe RTE notes some advanced dementia patients may be unaware that EAS is being performed and respond negatively to the implementation process, giving the appearance of resistance.
“The RTE notes some advanced dementia patients may be unaware that EAS is being performed and respond negatively to the implementation process “…giving the appearance of resistance.”(11)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [11] Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductown dataThe use of statistical tests was post-hoc using a small sample and should be interpreted with caution.
“Fourth, our use of statistical tests was post-hoc using a small sample and should be interpreted with caution.”
Quote in the paperNot a substantial claimMay combine two claims.
InterpretationreasoningThe assessment of capacity in dementia EAS appears to be either a functional model applied with a low threshold or a model that prioritizes an authenticity criterion.
“Instead, it appears to be either a functional model applied with a low threshold (the ability to express a consistent choice, relying even on utterances and behaviors) or a model that prioritizes a kind of authenticity criterion (focusing on whether the patient’s previously stated wishes are still in effect, despite current severe impairments).”
Quote in the paperSubstantial claim
The paper relies on this without support.
There is a paucity of data about the practice of advance request EAS, and even less regarding concurrent request EAS.
“Despite the controversy, there is a paucity of data about the practice of advance request EAS, and even less regarding concurrent request EAS.”
The paper relies on this without support.
The published RTE reports are the only contemporaneous accounts of dementia EAS with patient-level detail available to inform the practice.
“these published reports are the only contemporaneous accounts of dementia EAS with patient level detail available to inform this important practice.”
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
There are data showing that advance request for MAiD-NT in cases of patients with dementia was complicated by ambiguous directives, patients being unaware of the procedure, and physicians' difficulty in assessing unbearable suffering.
“For example, there are data showing that advance request for MAiD-NT in cases of patients with dementia was complicated by ambiguous directives, patients being unaware of the procedure, and physicians’ difficulty in assessing “unbearable suffering.” [71]”
From Debating Euthanasia and Physician-Assisted Death in People with Psychiatric Disorders (2022) · cites this paper as [71]
The citation lists haven’t been fetched yet
References 22 · Cited by 53
Research works printed but not linked: 9
- Regional Euthanasia Review Committees: Annual report 2012, The Hague, 2013
- Regional Euthanasia Review Committees: Annual report 2017, The Hague, 2018
- Regional Euthanasia Review Committees: Annual report 2011, The Hague, 2012
- Regional Euthanasia Review Committees: Euthanasia Code 2018, The Hague, 2018
- Regional Euthanasia Review Committees: Annual report 2015, The Hague, 2016
- Regional Euthanasia Review Committees: Annual report 2013, The Hague, 2014
- Regional Euthanasia Review Committees: Annual report 2014, The Hague, 2015
- Regional Euthanasia Review Committees: Annual report 2016, The Hague, 2017
- Regional Euthanasia Review Committees: uitspraken over Dementie [RTE 2019. Available at: https://www.euthanasiecommissie.nl/uitspraken-en-uitleg/d/dementie/documenten
- Authors
- Mangino, D. R., Nicolini, M. E., De Vries, R. G., & Kim, S. Y. H.
- Affiliations
- National Institutes of Health (US)
- Corresponding author
- Kim, Scott Y.H.
- Venue
- The American Journal of Geriatric Psychiatry
- Publisher
- Elsevier BV
- Published
- 2020-04
- Volume
- 28
- Issue
- 4
- Pages
- 466-477
- ISSN
- 1064-7481 (ISSN-L)
- PMC
- PMC7035163
- OpenAlex
- W2969317493
- Semantic Scholar
- 3d05b5d3e5431c0e17c2e621c2e24a13388a8648
- Cited by
- 53
- References
- 22
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 7 · 2023: 7 · 2022: 17 · 2021: 13 · 2020: 4 · 2019: 1
- FWCI
- 8.05
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- American Journal of Geriatric Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Lirias (submittedVersion, other-oa)
- Research Publications (Maastricht University) (submittedVersion)
- Funders
- NIH Clinical Center
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- euthanasia, assisted suicide, dementia, Alzheimer's disease, advance directives, competency assessment, unbearable suffering, physician decision-making, Netherlands
- MeSH terms
- Aged, Aged, 80 and over, Chronic Disease, Decision Making, Dementia, Euthanasia, Female, Humans, Male, Middle Aged, Netherlands, Physicians, Treatment Refusal, Mental Competency, Suicide, Assisted, Government Regulation, Standard of Care
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