In: Onwuteaka‐Philipsen, Bregje, Willmott, Lindy, & White, Benjamin P. (2019) Regulating voluntary assisted dying in Australia: Some insights from the Netherlands. Medical Journal of Australia, 211(10), 438-439.e1.
Abstract Background The Netherlands, Belgium, and Luxembourg have adopted laws decriminalizing euthanasia under strict conditions of prudent practice. These laws stipulate, among other things, that the attending physician should consult an independent colleague to judge whether the substantive criteria of due care have been met. In this context initiatives were taken in the Netherlands and Belgium to establish specialized services providing such consultants: Support and Consultation for Euthanasia in the Netherlands (SCEN) and Life End Information Forum (LEIF) in Belgium. The aim of this study is to describe and compare these initiatives. Methods We studied and compared relevant documents concerning the Dutch and Belgian consultation service (e.g. articles of bye-laws, inventories of activities, training books, consultation protocols). Results In both countries, the consultation services are delivered by trained physicians who can be consulted in cases of a request for euthanasia and who offer support and information to attending physicians. The context in which the two organisations were founded, as well as the way they are organised and regulated, is different in each country. By providing information on all end-of-life care matters, the Belgian LEIF seems to have a broader consultation role than the Dutch SCEN. SCEN on the other hand has a longer history, is more regulated and organised on a larger scale and receives more government funding than LEIF. The number of training hours for physicians is equal. However, SCEN-training puts more emphasis on the consultation report, whereas LEIF-training primarily emphasizes the ethical framework of end-of-life decisions. Conclusion In case of a request for euthanasia, in the Netherlands as well as in Belgium similar consultation services by independent qualified physicians have been developed. In countries where legalising physician-assisted death is being contemplated, the development of such a consultation provision could also be considered in order to safeguard the practice of euthanasia (as it can provide safeguards to adequate performance of euthanasia and assisted suicide).
Objectives: Relatives of patients who died after euthanasia or physician-assisted suicide (EAS) might need (specific) aftercare. We examined if and how physicians provide aftercare to bereaved relatives of patients who died after EAS, and which patient-, physician- and process characteristics are associated with providing aftercare.Methods: A cross-sectional questionnaire study was conducted among 127 physicians (general practitioners, clinical specialists, and elderly care physicians) in the Netherlands. Associations were examined using multivariable logistic regression analyses.Results: Most physicians had had at least one follow-up conversation with bereaved relatives (77.2%). Clinical specialists less often provided aftercare compared to GPs. Also, aftercare was more often provided when the deceased had a cohabiting partner. Topics addressed during aftercare conversations included looking back on practical aspects of the EAS trajectory, the emotional experience of relatives during the EAS trajectory and relatives' current mental wellbeing. A minority of aftercare conversations led to referral to additional care (6.3%).Conclusion: Aftercare conversations with a physician covering a wide-range of topics are likely to be valuable for all bereaved relatives, and not just for "at risk" populations typically targeted by policies and guidelines.
In: Kox , R M K , Pasman , H R W , Huisman , M , Benneker , W & Onwuteaka-Philipsen , B D 2021 , ' Current wishes to die; characteristics of middle-aged and older Dutch adults who are ready to give up on life : a cross-sectional study ' , Bmc medical ethics , vol. 22 , no. 1 , 64 . https://doi.org/10.1186/s12910-021-00632-4 ; ISSN:1472-6939
Background Literature shows that middle-aged and older adults sometimes experience a wish to die. Reasons for these wishes may be complex and involve multiple factors. One important question is to what extent people with a wish to die have medically classifiable conditions. Aim (1) Estimate the prevalence of a current wish to die among middle-aged and older adults in The Netherlands; (2) explore which factors within domains of vulnerability (physical, cognitive, social and psychological) are associated with a current wish to die; (3) assess how many middle-aged and older adults with a current wish to die do not have a medically classifiable condition and/or an accumulation of age-related health problems. Methods Data of 2015/16 from the Longitudinal Aging Study Amsterdam were used for this cross-sectional study (1563 Dutch middle-aged and older adults aged between 57 and 99 years), obtained through structured medical interviews and self-reported questionnaires. Three experienced physicians assessed whether the participants with a current wish to die could be classified as having a medically classifiable condition and/or an accumulation of age-related health problems. Results N = 62 participants (4.0%) had a current wish to die. Having a current wish to die was associated with multiple characteristics across four domains of vulnerability, among which: self-perceived health, problems with memory, self-perceived quality of life and meaningfulness of life. Fifty-four participants with a current wish to die were assessed with having a medically classifiable condition, of which one was also assessed with having an accumulation of age-related health problems. Six people were assessed to have neither, and for two people it was unclear. Conclusion A small minority of middle-aged and older adults in the Netherlands have a current wish to die. Most of them can be classified with a medical condition and one person with an accumulation of age-related health problems. Furthermore, the findings show that having a current wish ...
In: Evenblij , K , Pasman , H R W , Van Der Heide , A , Hoekstra , T & Onwuteaka-Philipsen , B D 2019 , ' Factors associated with requesting and receiving euthanasia : A nationwide mortality follow-back study with a focus on patients with psychiatric disorders, dementia, or an accumulation of health problems related to old age 11 Medical and Health Sciences 1117 Public Health and Health Services 11 Medical and Health Sciences 1103 Clinical Sciences ' , BMC Medicine , vol. 17 , no. 1 , 39 . https://doi.org/10.1186/s12916-019-1276-y
Background: Recently, euthanasia and assisted suicide (EAS) in patients with psychiatric disorders, dementia, or an accumulation of health problems has taken a prominent place in the public debate. However, limited is known about this practice. The purpose of this study was threefold: to estimate the frequency of requesting and receiving EAS among people with (also) a psychiatric disorder, dementia, or an accumulation of health problems; to explore reasons for physicians to grant or refuse a request; and to describe differences in characteristics, including the presence of psychiatric disorders, dementia, and accumulation of health problems, between patients who did and did not request EAS and between patients whose request was or was not granted. Methods: A nationwide cross-sectional survey study was performed. A stratified sample of death certificates of patients who died between 1 August and 1 December 2015 was drawn from the central death registry of Statistics Netherlands. Questionnaires were sent to the certifying physician (n = 9351, response 78%). Only deceased patients aged ≥ 17 years and who died a non-sudden death were included in the analyses (n = 5361). Results: The frequency of euthanasia requests among deceased people who died non-suddenly and with (also) a psychiatric disorder (11.4%), dementia (2.1%), or an accumulation of health problems (8.0%) varied. Factors positively associated with requesting euthanasia were age (< 80 years), ethnicity (Dutch/Western), cause of death (cancer), attending physician (general practitioner), and involvement of a pain specialist or psychiatrist. Cause of death (neurological disorders, another cause) and attending physician (general practitioner) were also positively associated with receiving euthanasia. Psychiatric disorders, dementia, and/or an accumulation of health problems were negatively associated with both requesting and receiving euthanasia. Conclusions: EAS in deceased patients with psychiatric disorders, dementia, and/or an accumulation of health problems is relatively rare. Partly, this can be explained by the belief that the due care criteria cannot be met. Another explanation is that patients with these conditions are less likely to request EAS.
In: Klop , H T , Evenblij , K , Gootjes , J R G , de Veer , A J E & Onwuteaka-Philipsen , B D 2018 , ' Care avoidance among homeless people and access to care: an interview study among spiritual caregivers, street pastors, homeless outreach workers and formerly homeless people ' , BMC Public Health , vol. 18 , no. 1 , pp. 1095 . https://doi.org/10.1186/s12889-018-5989-1
BACKGROUND: Because of their poor health and social vulnerability, homeless people require specific care. However, due to care avoidance, homeless people are often not involved in care. This study aims to get insights into reasons for and kinds of care avoidance among homeless people and to provide suggestions to reach this target group. METHODS: Semi-structured individual interviews were conducted among street pastors (n = 9), spiritual caregivers (n = 9), homeless outreach workers (n = 7) and formerly homeless people (n = 3). Participants were recruited by purposive sampling in the four major cities in the Netherlands (Amsterdam, Utrecht, Rotterdam, The Hague). The verbatim transcripts were analysed using thematic analysis. RESULTS: The term care avoidance was perceived as stigmatizing. Care avoidance is found to be related to characteristics of the homeless person (e.g. having complex problems, other priorities) as well as of the system (e.g. complex system, conditions and requirements of organizations). The person-related characteristics suggestions to involve homeless persons include tailoring care and building relationships, which might even be prioritised over starting care interventions. Setting limits on behaviour without rejecting the person, and an attitude reflecting humanity, dignity and equality were also important factors in making care more accessible and lasting. As regards system-related characteristics, the suggestions include clear information and communication to homeless people who avoid care as being crucial in order to make care more accessible. Other suggestions include quiet and less busy shelters, a non-threatening attitude and treatment by professionals, self-reflection by professionals and finally a change of policy and legislation regarding available time. CONCLUSIONS: Reasons for care avoidance can be found in the interplay between both the individual and the system; measures to reduce care avoidance should be taken at both levels. These measures are centred on lowering the barriers to care inter alia by incorporating building trust and understanding into the care provided.
In: Evenblij , K , Pasman , H R W , van der Heide , A , van Delden , J J M & Onwuteaka-Philipsen , B D 2019 , ' Public and physicians' support for euthanasia in people suffering from psychiatric disorders: A cross-sectional survey study ' , BMC Medical Ethics , vol. 20 , no. 1 , 62 . https://doi.org/10.1186/s12910-019-0404-8
Background: Although euthanasia and assisted suicide (EAS) in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients. Methods: A survey was distributed amongst a random sample of Dutch 2641 citizens (response 75%) and 3000 physicians (response 52%). Acceptance and conceivability of performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed. Results: Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority (> 65%) of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient's suffering is unbearable and without prospect and whether the request is well-considered. Conclusion: The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians' support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria.
Background Although euthanasia and assisted suicide (EAS) in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients. Methods A survey was distributed amongst a random sample of Dutch 2641 citizens (response 75%) and 3000 physicians (response 52%). Acceptance and conceivability of performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed. Results Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority (> 65%) of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient's suffering is unbearable and without prospect and whether the request is well-considered. Conclusion The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians' support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria.
Objectives: We explored characteristics of people with an accumulation of health problems related to old age requesting euthanasia or physician-assisted suicide (EAS) and identified characteristics associated with granting EAS requests.Methods: We conducted a cross-sectional questionnaire study among Dutch physicians on characteristics of these people requesting EAS (n = 123). Associations between characteristics and granting a request were assessed using logistic regression analyses.Results: People requesting EAS were predominantly >80 years old (82.4%), female (70.0%), widow/widower (71.7%), (partially) care-dependent (76.7%), and had a life expectancy >12 months (68.6%). The most prevalent health problems were osteoarthritis (70.4%) and impaired vision and hearing (53.0% and 40.9%). The most cited reasons to request EAS were physical deterioration (68.6%) and dependence (61.2%). 44.7% of requests were granted. Granting a request was positively associated with care dependence, disability/immobility, impaired vision, osteoporosis, loss of control, suffering without prospect of improvement and a treatment relationship with the physician >12 months.Conclusion: Enhanced understanding of people with an accumulation of health problems related to old age requesting EAS can contribute to the ongoing debate on the permissibility of EAS in people without life-threatening conditions.
In: Dierickx , S , Onwuteaka-Philipsen , B , Penders , Y , Cohen , J , van der Heide , A , Puhan , M A , Ziegler , S , Bosshard , G , Deliens , L & Chambaere , K 2020 , ' Commonalities and differences in legal euthanasia and physician-assisted suicide in three countries: a population-level comparison ' , International Journal of Public Health , vol. 65 , no. 1 , pp. 65-73 . https://doi.org/10.1007/s00038-019-01281-6
Objectives: To describe and compare euthanasia and physician-assisted suicide (EAS) practice in Flanders, Belgium (BE), the Netherlands (NL) and Switzerland (CH). Methods: Mortality follow-back surveys among attending physicians of a random sample of death certificates. Results: We studied 349 EAS deaths in BE (4.6% of all deaths), 851 in NL (4.6% of all deaths) and 65 in CH (1.4% of all deaths). People who died by EAS were mostly aged 65 or older (BE: 81%, NL: 77% and CH: 71%) and were mostly diagnosed with cancer (BE: 57% and NL: 66%). Home was the most common place of death in NL (79%), while in BE and CH, more variation was found regarding to place of death. The decision to perform EAS was more frequently discussed with a colleague physician in BE (93%) and NL (90%) than in CH (60%). Conclusions: EAS practice characteristics vary considerably in the studied countries with legal EAS. In addition to the legal context, cultural factors as well as the manner in which legislation is implemented play a role in how EAS legislation translates into practice.
In: Honinx , E , Piers , R D , Onwuteaka-Philipsen , B D , Payne , S , Szczerbińska , K , Gambassi , G , Kylänen , M , Deliens , L , van den Block , L & Smets , T 2021 , ' Hospitalisation in the last month of life and in-hospital death of nursing home residents: A cross-sectional analysis of six European countries ' , BMJ Open , vol. 11 , no. 8 , e047086 . https://doi.org/10.1136/bmjopen-2020-047086
Objectives To examine the rate and characteristics of hospitalisation in the last month of life and place of death among nursing home residents and to identify related care processes, facility factors and residents' characteristics. Setting A cross-sectional study (2015) of deceased residents in 322 nursing homes in six European countries. Participants The nursing home manager (N=1634), physician (N=1132) and primary nurse (N=1384) completed questionnaires. Outcome measures Hospitalisation and place of death were analysed using generalised linear and logistic mixed models. Multivariate analyses were conducted to determine associated factors. Results Twelve to 26% of residents were hospitalised in the last month of life, up to 19% died in-hospital (p<0.001). Belgian residents were more likely to be hospitalised than those in Italy, the Netherlands and Poland. For those dying in-hospital, the main reason for admission was acute change in health status. Residents with a better functional status were more likely to be hospitalised or to die in-hospital. The likelihood of hospitalisation and in-hospital death increased if no conversation on preferred care with a relative was held. Not having an advance directive regarding hospitalisations increased the likelihood of hospitalisation. Conclusions Although participating countries vary in hospitalisation and in-hospital death rates, between 12% (Italy) and 26% (Belgium) of nursing home residents were hospitalised in the last month of life. Close monitoring of acute changes in health status and adequate equipment seem critical to avoiding unnecessary hospitalisations. Strategies to increase discussion of preferences need to be developed. Our findings can be used by policy-makers at governmental and nursing home level.
OBJECTIVES: To examine the rate and characteristics of hospitalisation in the last month of life and place of death among nursing home residents and to identify related care processes, facility factors and residents' characteristics. SETTING: A cross-sectional study (2015) of deceased residents in 322 nursing homes in six European countries. PARTICIPANTS: The nursing home manager (N=1634), physician (N=1132) and primary nurse (N=1384) completed questionnaires. OUTCOME MEASURES: Hospitalisation and place of death were analysed using generalised linear and logistic mixed models. Multivariate analyses were conducted to determine associated factors. RESULTS: Twelve to 26% of residents were hospitalised in the last month of life, up to 19% died in-hospital (p<0.001). Belgian residents were more likely to be hospitalised than those in Italy, the Netherlands and Poland. For those dying in-hospital, the main reason for admission was acute change in health status. Residents with a better functional status were more likely to be hospitalised or to die in-hospital. The likelihood of hospitalisation and in-hospital death increased if no conversation on preferred care with a relative was held. Not having an advance directive regarding hospitalisations increased the likelihood of hospitalisation. CONCLUSIONS: Although participating countries vary in hospitalisation and in-hospital death rates, between 12% (Italy) and 26% (Belgium) of nursing home residents were hospitalised in the last month of life. Close monitoring of acute changes in health status and adequate equipment seem critical to avoiding unnecessary hospitalisations. Strategies to increase discussion of preferences need to be developed. Our findings can be used by policy-makers at governmental and nursing home level.
In: Andreasen , P , Finne-Soveri , U H , Deliens , L , van den Block , L , Payne , S , Gambassi , G , Onwuteaka-Philipsen , B D , Smets , T , Lilja , E , Kijowska , V & Szczerbińska , K 2019 , ' Advance directives in European long-term care facilities: A cross-sectional survey ' , BMJ Supportive & Palliative Care . https://doi.org/10.1136/bmjspcare-2018-001743
Background: End-of-life care practices in long-term care facilities (LTCFs) are the focus of growing attention in Europe, due to rapidly increasing number of older persons living in LTCFs. The knowledge about end-of-life discussions or existence of written advance directives in the European LTCFs is scarce. This study's aim is to investigate the prevalence of written advance directives and their sociodemographic associates, among recently deceased LTCF residents, in six European countries. Methods: Data from the European Union-funded PACE database were collected from 322 LTCFs in six European countries in 2014. The assessments were performed by using two questionnaires designed for LTCF administrative staff and for staff member. LTCFs were selected within each country by using proportional stratified random sampling procedure. Facilities with certain types and sizes were included from each country. Multilevel multivariate analyses were performed to evaluate associations between written advance directives and selected predictors. Results: In total, 32.5 % of the 1384 deceased LTCF residents had a written advance directive with a range from 0% to 77 % between countries. The proportion of the most common advance directive, ⠀ Do not resuscitate in case of cardiac or respiratory arrest (DNR)', varied correspondingly from 0% to 75%. LTCF type (OR 2.86 95% CI 1.59 to 5.23) and capability of expressing at the time of admission (OR 3.26 95% CI 2.26 to 4.71) were the independent predictors for advance directive. Residents living in LTCFs where physician was available were less likely to have advance directive compared with residents from LTCFs where physician was not available. Conclusion: Extensive differences for prevalence of written advance directive exist between countries among older LTCF residents in Europe. Timely and appropriate response to LTCF resident's health needs and preferences efforts advance care planning.