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Papers by Donald van Tol

Ziek van Gezondheid, 2013

Research article Reporting of euthanasia and physician-assisted suicide in the Netherlands: descr... more Research article Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study

Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands ha... more Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands has been regulated since 2002 by the Euthanasia Act. In the ongoing debate about the interpretation of this Act, comparative information about the opinions of the different stakeholders is needed. Aim: To evaluate the opinions of Dutch physicians, nurses and the general public on the legal requirements for euthanasia and PAS. Design: A cross-sectional survey among Dutch physicians and nurses in primary and secondary care and members of the Dutch general public, followed by qualitative interviews among selected respondents. The participants were: 793 physicians, 1243 nurses and 1960 members of the general public who completed the questionnaire; 83 were interviewed. Results: Most respondents agreed with the requirement of a patient request (64-88%) and the absence of a requirement concerning life expectancy (48-71%). PAS was thought acceptable by 24-39% of respondents for patients requesting it because of mental suffering * These authors contributed equally.

Journal of Clinical Oncology, 2018

e22011Background: Advances in oncology have resulted in prolonged disease trajectories in patient... more e22011Background: Advances in oncology have resulted in prolonged disease trajectories in patients with incurable cancer inducing discussions about the ‘right’ medical terminology. The impact of ch...

Family Practice, 2017

Background. In the Netherlands, euthanasia or assisted suicide (EAS) is neither a right of the pa... more Background. In the Netherlands, euthanasia or assisted suicide (EAS) is neither a right of the patient nor a duty of the physician. Beside the legal requirements, physicians can weigh their own considerations when they decide on a request for EAS. Objective. We aim at a better understanding of the considerations that play a role when physicians decide on a request for EAS. Methods. This was a qualitative study. We analysed 33 interviews held with general practitioners (GPs) from various regions in the Netherlands. Results. The considerations found can be divided in three main types. (i) Perceived legal criteria, (ii) individual interpretations of the legal criteria and (iii) considerations unrelated to the legal criteria. Considerations of this 3rd type have not been mentioned so far in the literature and the debate on EAS. Examples are: the family should agree to EAS, the patient's attitude must reflect resignation, or conflicts must be resolved. Conclusions. Our study feeds the ethical discussion on the tension that can arise between a physician's own views on death and dying, and the views and preferences of his patients. When considerations like 'no unresolved conflicts' or 'enough resignation' influence the decision to grant a request for EAS this poses questions from an ethical and professional point of view. We hypothesise that these considerations reflect GPs' views on what 'good dying' entails and we advocate further research on this topic.

Huisarts En Wetenschap, 2007

BMC medical ethics, Jan 28, 2015

The Dutch law states that a physician may perform euthanasia according to a written advance eutha... more The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive (AED) when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia. In this qualitative study, 16 medical specialists, 19 general practitioners, 16 elderly physicians and 16 members of the general public were interviewed and asked for their opions about a vignette on euthanasia based on an AED in a patient with advanced dementia. Members of the general public perceived advanced dementia as a debilitating and degrading disease. Physicians emphasized the need for direct communication with the patient when making decisions about euthanasia. Respondent from both groups acknowledged difficulties in the assessment of patients' autonomous wishes ...

Grensgeschillen: een rechtssociologisch onderzoek naar het classificeren van euthanasie en ander ... more Grensgeschillen: een rechtssociologisch onderzoek naar het classificeren van euthanasie en ander medisch handelen rond het levenseinde. s.n.

Journal of Pain and Symptom Management, 2014

Context. The practice of euthanasia and physician-assisted suicide (EAS) is always complex, but s... more Context. The practice of euthanasia and physician-assisted suicide (EAS) is always complex, but some cases are more complex than others. The nature of these unusually complex cases is not known. Objectives. To identify and categorize the characteristics of EAS requests that are more complex than others. Methods. We held in-depth interviews with 28 Dutch physicians about their perception of complex cases of EAS requests. We also interviewed 26 relatives of patients who had died by EAS. We used open coding and inductive analysis to identify various different aspects of the complexities described by the participants. Results. Complexities can be categorized into relational difficultiesdsuch as miscommunication, invisible suffering, and the absence of a process of growth toward EASdand complexities that arise from unexpected situations, such as the capricious progress of a disease or the obligation to move the patient. The interviews showed that relatives of the patient influence the process toward EAS. Conclusion. First, the process toward EAS may be disrupted, causing a complex situation. Second, the course of the process toward EAS is influenced not only by the patient and his/her attending physician but also by the relatives who are involved. Communicating and clarifying expectations throughout the process may help to prevent the occurrence of unusually complex situations.

European Journal of Pediatrics, 2014

Alleviation of suffering is considered to be one of the important goals of medical interventions.... more Alleviation of suffering is considered to be one of the important goals of medical interventions. Understanding of what constitutes suffering in children admitted to a pediatric intensive care unit (PICU) is lacking. This study aims to assess perceptions by parents, doctors, and nurses of suffering in critically ill children. We interviewed 124 participants (parents, physicians, and PICU nurses) caring for 29 admitted children in a 20-bed level-III PICU and performed a qualitative analysis. We found that most participants made a distinction between physical and existential suffering. Parents considered the child's suffering caused by or associated with visible signs as discomfort. Nurses linked suffering to the child's state of comfort. Physicians linked them to the intensity and impact of treatment and future perspectives of the child. Various aspects of the child's suffering and admission to a PICU caused suffering in parents. Conclusion: Parents', physicians', and nurses' perceptions of suffering overlap but also show important differences. Differences found seem to be rooted in the relation to and kind of responsibility (parental/professional) for the child. The child's illness, suffering, and hospital admission cause suffering in parents. Health-care professionals in PICUs need to be aware of these phenomena.

Huisarts en Wetenschap, 2007

Samenvatting Van Tol DG. What’s in a name? Over het classificeren van medisch handelen rond het ... more Samenvatting Van Tol DG. What’s in a name? Over het classificeren van medisch handelen rond het levenseinde door huisartsen en officieren van justitie. Huisarts Wet 2007;50(3):95-9. Artsen en juristen kunnen moeilijk door één deur. Toch hebben beide disciplines de afgelopen jaren steeds meer met elkaar te maken. Ook in geval van medisch handelen rond het levenseinde is het doen en laten

Recht der Werkelijkheid, 2014

van der Vegt en Cristiano Vezzoni. 1 Opzettelijk levensbeëindigend handelen op verzoek. 2 Het toe... more van der Vegt en Cristiano Vezzoni. 1 Opzettelijk levensbeëindigend handelen op verzoek. 2 Het toedienen van sederende middelen tot het ingetreden zijn van de dood in de laatste levensfase. De terminologie is verschillend. In de beroepsgroep wordt gesproken over palliatieve sedatie. Daarmee wordt zowel sedatie tot de dood (continue sedatie) bedoeld als intermitterende sedatie. In het onderzoek is alleen gekeken naar het eerste. 3 Van de onderzoeksbevindingen is in 2011 verslag gedaan in het rapport Kennis en opvattingen van publiek en professionals over medische besluitvorming en behandeling rond het einde van het leven, Het KOPPEL-onderzoek. Dit verslag is te bestellen en te downloaden via de website van ZonMw (www. zonmw.nl/uploads/tx_vipublicaties/ZonMw_A4_RapportKOPPELDEF_klein.pdf). 4 Van Tol (2005) maakte dit onderscheid zonder het op deze wijze aan te duiden. 5 Van Tol 2005 in zijn uitwerking van het werk van Griffiths (o.a. Griffiths 2005). 24 Recht der Werkelijkheid 2014 (35) 2 Dit artikel uit Recht der Werkelijkheid is gepubliceerd door Boom Juridische uitgevers en is bestemd voor Rijks Universiteit Groningen

Journal of Psychiatric Practice, 2014

Palliative Medicine, 2012

Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands ha... more Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands has been regulated since 2002 by the Euthanasia Act. In the ongoing debate about the interpretation of this Act, comparative information about the opinions of the different stakeholders is needed. Aim: To evaluate the opinions of Dutch physicians, nurses and the general public on the legal requirements for euthanasia and PAS. Design: A cross-sectional survey among Dutch physicians and nurses in primary and secondary care and members of the Dutch general public, followed by qualitative interviews among selected respondents. The participants were: 793 physicians, 1243 nurses and 1960 members of the general public who completed the questionnaire; 83 were interviewed. Results: Most respondents agreed with the requirement of a patient request (64–88%) and the absence of a requirement concerning life expectancy (48–71%). PAS was thought acceptable by 24–39% of respondents for patients requesting...

Journal of Medical Ethics, 2014

In order to relieve intractable suffering of a terminal patient, doctors may decide to continuous... more In order to relieve intractable suffering of a terminal patient, doctors may decide to continuously sedate a patient until the end of life. Little research is done on the role the family plays during the process of continuous sedation. This study aims to get a view of doctors' experiences with continuous sedation, and the role of the family throughout that process. We held in-depth interviews with 48 doctors (19 general practitioners, 16 nursing home doctors and 18 medical specialists). Participants were selected varying in experience and opinions concerning end-of-life decisions. Dutch physicians experience the role of family in continuous sedation as important and potentially difficult. Difficulties may rise especially during the final stages when the patient is no longer conscious and family members are waiting for death to come. Disagreement may arise between physician and family, concerning the dignity of the dying process or the question whether the sedated patient is suffering or not. Some physicians report they hastened the dying process, in order to relieve the families' suffering.

Journal of Medical Ethics, 2009

In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopel... more In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated. 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a "standard case" of a patient with physical suffering and limited life expectancy, the descriptions included cases in which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable. The cases were recognisable for almost all respondents. For the "standard case" nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2-49%) than consultants (25-79%) and members of the euthanasia review committees (24-88%). In each group, the suffering of patients with early dementia and patients who were "tired of living" was least often considered to be unbearable. When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient's suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia.

Health Policy, 2012

A pivotal due care criterion for lawful euthanasia in the Netherlands is that doctors must be con... more A pivotal due care criterion for lawful euthanasia in the Netherlands is that doctors must be convinced that a patient requesting for euthanasia, suffers unbearably. Our study aims to find out how doctors judge if a patient suffers unbearably. How do doctors bridge the gap from 3rd person assessment to 1st person experience? We performed a qualitative interview study among 15 physicians, mainly general practitioners, who participated earlier in a related quantitative survey on the way doctors apply the suffering criterion. Results show that doctors follow different 'cognitive routes' when assessing a patients suffering in the context of a euthanasia request. Sometimes doctors do this imagining how she herself would experience the situation of the patient ('imagine self'). Doctors may also try to adopt the perspective of the patient and imagine what the situation is like for this particular patient ('imagine other'). Besides this we found that the (outcome of the) assessment is influenced by a doctor's private norms, values and emotions considering (the performance of) euthanasia. We conclude by arguing why doctors should be aware of both the 'cognitive route' followed as well as the influence of their own personal norms on the assessment of suffering in the context of euthanasia requests.

Ziek van Gezondheid, 2013

Research article Reporting of euthanasia and physician-assisted suicide in the Netherlands: descr... more Research article Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study

Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands ha... more Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands has been regulated since 2002 by the Euthanasia Act. In the ongoing debate about the interpretation of this Act, comparative information about the opinions of the different stakeholders is needed. Aim: To evaluate the opinions of Dutch physicians, nurses and the general public on the legal requirements for euthanasia and PAS. Design: A cross-sectional survey among Dutch physicians and nurses in primary and secondary care and members of the Dutch general public, followed by qualitative interviews among selected respondents. The participants were: 793 physicians, 1243 nurses and 1960 members of the general public who completed the questionnaire; 83 were interviewed. Results: Most respondents agreed with the requirement of a patient request (64-88%) and the absence of a requirement concerning life expectancy (48-71%). PAS was thought acceptable by 24-39% of respondents for patients requesting it because of mental suffering * These authors contributed equally.

Journal of Clinical Oncology, 2018

e22011Background: Advances in oncology have resulted in prolonged disease trajectories in patient... more e22011Background: Advances in oncology have resulted in prolonged disease trajectories in patients with incurable cancer inducing discussions about the ‘right’ medical terminology. The impact of ch...

Family Practice, 2017

Background. In the Netherlands, euthanasia or assisted suicide (EAS) is neither a right of the pa... more Background. In the Netherlands, euthanasia or assisted suicide (EAS) is neither a right of the patient nor a duty of the physician. Beside the legal requirements, physicians can weigh their own considerations when they decide on a request for EAS. Objective. We aim at a better understanding of the considerations that play a role when physicians decide on a request for EAS. Methods. This was a qualitative study. We analysed 33 interviews held with general practitioners (GPs) from various regions in the Netherlands. Results. The considerations found can be divided in three main types. (i) Perceived legal criteria, (ii) individual interpretations of the legal criteria and (iii) considerations unrelated to the legal criteria. Considerations of this 3rd type have not been mentioned so far in the literature and the debate on EAS. Examples are: the family should agree to EAS, the patient's attitude must reflect resignation, or conflicts must be resolved. Conclusions. Our study feeds the ethical discussion on the tension that can arise between a physician's own views on death and dying, and the views and preferences of his patients. When considerations like 'no unresolved conflicts' or 'enough resignation' influence the decision to grant a request for EAS this poses questions from an ethical and professional point of view. We hypothesise that these considerations reflect GPs' views on what 'good dying' entails and we advocate further research on this topic.

Huisarts En Wetenschap, 2007

BMC medical ethics, Jan 28, 2015

The Dutch law states that a physician may perform euthanasia according to a written advance eutha... more The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive (AED) when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia. In this qualitative study, 16 medical specialists, 19 general practitioners, 16 elderly physicians and 16 members of the general public were interviewed and asked for their opions about a vignette on euthanasia based on an AED in a patient with advanced dementia. Members of the general public perceived advanced dementia as a debilitating and degrading disease. Physicians emphasized the need for direct communication with the patient when making decisions about euthanasia. Respondent from both groups acknowledged difficulties in the assessment of patients' autonomous wishes ...

Grensgeschillen: een rechtssociologisch onderzoek naar het classificeren van euthanasie en ander ... more Grensgeschillen: een rechtssociologisch onderzoek naar het classificeren van euthanasie en ander medisch handelen rond het levenseinde. s.n.

Journal of Pain and Symptom Management, 2014

Context. The practice of euthanasia and physician-assisted suicide (EAS) is always complex, but s... more Context. The practice of euthanasia and physician-assisted suicide (EAS) is always complex, but some cases are more complex than others. The nature of these unusually complex cases is not known. Objectives. To identify and categorize the characteristics of EAS requests that are more complex than others. Methods. We held in-depth interviews with 28 Dutch physicians about their perception of complex cases of EAS requests. We also interviewed 26 relatives of patients who had died by EAS. We used open coding and inductive analysis to identify various different aspects of the complexities described by the participants. Results. Complexities can be categorized into relational difficultiesdsuch as miscommunication, invisible suffering, and the absence of a process of growth toward EASdand complexities that arise from unexpected situations, such as the capricious progress of a disease or the obligation to move the patient. The interviews showed that relatives of the patient influence the process toward EAS. Conclusion. First, the process toward EAS may be disrupted, causing a complex situation. Second, the course of the process toward EAS is influenced not only by the patient and his/her attending physician but also by the relatives who are involved. Communicating and clarifying expectations throughout the process may help to prevent the occurrence of unusually complex situations.

European Journal of Pediatrics, 2014

Alleviation of suffering is considered to be one of the important goals of medical interventions.... more Alleviation of suffering is considered to be one of the important goals of medical interventions. Understanding of what constitutes suffering in children admitted to a pediatric intensive care unit (PICU) is lacking. This study aims to assess perceptions by parents, doctors, and nurses of suffering in critically ill children. We interviewed 124 participants (parents, physicians, and PICU nurses) caring for 29 admitted children in a 20-bed level-III PICU and performed a qualitative analysis. We found that most participants made a distinction between physical and existential suffering. Parents considered the child's suffering caused by or associated with visible signs as discomfort. Nurses linked suffering to the child's state of comfort. Physicians linked them to the intensity and impact of treatment and future perspectives of the child. Various aspects of the child's suffering and admission to a PICU caused suffering in parents. Conclusion: Parents', physicians', and nurses' perceptions of suffering overlap but also show important differences. Differences found seem to be rooted in the relation to and kind of responsibility (parental/professional) for the child. The child's illness, suffering, and hospital admission cause suffering in parents. Health-care professionals in PICUs need to be aware of these phenomena.

Huisarts en Wetenschap, 2007

Samenvatting Van Tol DG. What’s in a name? Over het classificeren van medisch handelen rond het ... more Samenvatting Van Tol DG. What’s in a name? Over het classificeren van medisch handelen rond het levenseinde door huisartsen en officieren van justitie. Huisarts Wet 2007;50(3):95-9. Artsen en juristen kunnen moeilijk door één deur. Toch hebben beide disciplines de afgelopen jaren steeds meer met elkaar te maken. Ook in geval van medisch handelen rond het levenseinde is het doen en laten

Recht der Werkelijkheid, 2014

van der Vegt en Cristiano Vezzoni. 1 Opzettelijk levensbeëindigend handelen op verzoek. 2 Het toe... more van der Vegt en Cristiano Vezzoni. 1 Opzettelijk levensbeëindigend handelen op verzoek. 2 Het toedienen van sederende middelen tot het ingetreden zijn van de dood in de laatste levensfase. De terminologie is verschillend. In de beroepsgroep wordt gesproken over palliatieve sedatie. Daarmee wordt zowel sedatie tot de dood (continue sedatie) bedoeld als intermitterende sedatie. In het onderzoek is alleen gekeken naar het eerste. 3 Van de onderzoeksbevindingen is in 2011 verslag gedaan in het rapport Kennis en opvattingen van publiek en professionals over medische besluitvorming en behandeling rond het einde van het leven, Het KOPPEL-onderzoek. Dit verslag is te bestellen en te downloaden via de website van ZonMw (www. zonmw.nl/uploads/tx_vipublicaties/ZonMw_A4_RapportKOPPELDEF_klein.pdf). 4 Van Tol (2005) maakte dit onderscheid zonder het op deze wijze aan te duiden. 5 Van Tol 2005 in zijn uitwerking van het werk van Griffiths (o.a. Griffiths 2005). 24 Recht der Werkelijkheid 2014 (35) 2 Dit artikel uit Recht der Werkelijkheid is gepubliceerd door Boom Juridische uitgevers en is bestemd voor Rijks Universiteit Groningen

Journal of Psychiatric Practice, 2014

Palliative Medicine, 2012

Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands ha... more Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands has been regulated since 2002 by the Euthanasia Act. In the ongoing debate about the interpretation of this Act, comparative information about the opinions of the different stakeholders is needed. Aim: To evaluate the opinions of Dutch physicians, nurses and the general public on the legal requirements for euthanasia and PAS. Design: A cross-sectional survey among Dutch physicians and nurses in primary and secondary care and members of the Dutch general public, followed by qualitative interviews among selected respondents. The participants were: 793 physicians, 1243 nurses and 1960 members of the general public who completed the questionnaire; 83 were interviewed. Results: Most respondents agreed with the requirement of a patient request (64–88%) and the absence of a requirement concerning life expectancy (48–71%). PAS was thought acceptable by 24–39% of respondents for patients requesting...

Journal of Medical Ethics, 2014

In order to relieve intractable suffering of a terminal patient, doctors may decide to continuous... more In order to relieve intractable suffering of a terminal patient, doctors may decide to continuously sedate a patient until the end of life. Little research is done on the role the family plays during the process of continuous sedation. This study aims to get a view of doctors' experiences with continuous sedation, and the role of the family throughout that process. We held in-depth interviews with 48 doctors (19 general practitioners, 16 nursing home doctors and 18 medical specialists). Participants were selected varying in experience and opinions concerning end-of-life decisions. Dutch physicians experience the role of family in continuous sedation as important and potentially difficult. Difficulties may rise especially during the final stages when the patient is no longer conscious and family members are waiting for death to come. Disagreement may arise between physician and family, concerning the dignity of the dying process or the question whether the sedated patient is suffering or not. Some physicians report they hastened the dying process, in order to relieve the families' suffering.

Journal of Medical Ethics, 2009

In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopel... more In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated. 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a "standard case" of a patient with physical suffering and limited life expectancy, the descriptions included cases in which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable. The cases were recognisable for almost all respondents. For the "standard case" nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2-49%) than consultants (25-79%) and members of the euthanasia review committees (24-88%). In each group, the suffering of patients with early dementia and patients who were "tired of living" was least often considered to be unbearable. When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient's suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia.

Health Policy, 2012

A pivotal due care criterion for lawful euthanasia in the Netherlands is that doctors must be con... more A pivotal due care criterion for lawful euthanasia in the Netherlands is that doctors must be convinced that a patient requesting for euthanasia, suffers unbearably. Our study aims to find out how doctors judge if a patient suffers unbearably. How do doctors bridge the gap from 3rd person assessment to 1st person experience? We performed a qualitative interview study among 15 physicians, mainly general practitioners, who participated earlier in a related quantitative survey on the way doctors apply the suffering criterion. Results show that doctors follow different 'cognitive routes' when assessing a patients suffering in the context of a euthanasia request. Sometimes doctors do this imagining how she herself would experience the situation of the patient ('imagine self'). Doctors may also try to adopt the perspective of the patient and imagine what the situation is like for this particular patient ('imagine other'). Besides this we found that the (outcome of the) assessment is influenced by a doctor's private norms, values and emotions considering (the performance of) euthanasia. We conclude by arguing why doctors should be aware of both the 'cognitive route' followed as well as the influence of their own personal norms on the assessment of suffering in the context of euthanasia requests.