To cite this article: Pennec et al. S, et al. Physician-assisted deaths in France: Results from a nationwide survey. Presse Med. (2015), http://dx.doi.org/10.1016/j.lpm.2015.04.020 Presse Med. 2015; //: ///
Physician-assisted deaths in France: Results from a nationwide survey Les décès médicalement assistés en France : résultats d'une enquête nationale The decriminalisation of physician-assisted death for terminally ill patients remains a highly controversial issue of social concern in many countries [1]. In France, the 2005 Patients' Rights and End-of-Life Act maintained the ban on physician-assisted death (but invited doctors to "allow patients to die''). A new law under review introduces the possibility of "deep and continuous sedation until death''. In the 2010 End-of-Life in France survey (EOLF), some physicians reported having "deliberately hastened death, at the patient's request'' which is the Belgian definition of euthanasia. To help inform the current public debate with empirical data, we provide contextual details of these practices outside the law. Methods The 2010 EOLF is a nationwide survey based on a representative sample of 15 000 deaths that occurred in December 2009. It adopted an approach similar to that of the Eureld surveys [2]. Certifying physicians were questioned about the end-of-life of their patient (palliative care, expression of a wish to die, explicit request for euthanasia, professionals involved during the last month of life. . .) and the medical decisions they took just before their patient's death (life-prolonging treatment, withholding or withdrawal of treatments, intensification of alleviation of pain and/or symptoms, administration of drugs to deliberately hasten the death of the patient; intention behind the main decision) [3]. The data collection method guaranteed respondents' total anonymity. A survey among non-respondent physicians shows that non response is not related to the topic of the survey. The participation rate was 40%, which corresponds to 4093 nonsudden deaths. Results According to the findings, 352 patients expressed a wish to die (8.7%, half of them explicitly), including 57 explicit requests for euthanasia (1.3%). In this paper, we consider nine cases where physicians reported "deliberately hastening the death'' of the patients at their request. Six physicians reported acceding to this request, and three others said that they refused initially, but finally took an end-of-life decision with the deliberate purpose
of hastening death, in compliance with the patient's earlier and sometimes repeated request. As shown in table I, most patients were women who died at home. Seven of the nine died of cancer, and one-third of overall deaths were due to cancer. All physicians in charge who reported having acceded to the patient's request for euthanasia were male general practitioners. Most reported having received no continuing education on end-of-life matters. Few received help from a palliative care team. Only one patient was referred to a psychologist or psychiatrist. The reasons put forward by the patients for their request were mainly pain or other symptoms not relieved by treatment, and a feeling of loss of dignity. The last decision-making process always involved the patient if conscious (six cases). In the other cases, it involved the appointed surrogate or family members, except in one case. None of the three unconscious patients had left advance directives. Most of these decisions combined the use of life-ending drugs with withholding or withdrawing life-prolonging treatments, and/or intensifying symptom-alleviating treatments. The drugs used were mostly opioids and/or benzodiazepines. In all cases but one, the last decision-making process involved other health care professionals, but another physician's advice was rarely reported. Life-ending drugs were administered by the physician him/herself, or by a nurse while a doctor was present, and in one case (patient #7) by a nurse alone. Despite having taken the decision to hasten death, only one physician (patient #1) labelled his/her decision "euthanasia''. The expression most often used to describe the last decision was "sedation for distress of a dying patient''. In all cases but one (patient #5), the physician said he/she had been very moved by the death.
Letter to the editor
en ligne sur / on line on www.em-consulte.com/revue/lpm www.sciencedirect.com
Discussion This research shows that while patients quite frequently express a wish to die, explicit requests for euthanasia are quite rare. The few cases where the responding physician's response on medical decisions corresponds to the definition of euthanasia in Belgium show that there is some vagueness in the characterisation of the medical practice by the physicians themselves. This confirms the results presented by ten Have [4], who found that they had trouble labelling their decisions, as is still the case among Belgian physicians even ten years after euthanasia was decriminalised [5,6]. In a context of the current debate about changes to the law, these results show that the most urgent priority is to intensify medical palliative education of all physicians, to develop
1
tome xx > n8x > xx 2015
LPM-2794
2
Letter to the editor
Patient 1
Patient 2
Patient 3
Patient 4
Patient 5
Patient 6
Patient 7
Patient 8
Patient 9
Age (years)
50–69
50–69
50–69
50–69
70–79
70–79
80–89
90 or more
Unknown
Gender
Female
Male
Female
Male
Female
Female
Female
Female
Female
Cause of death
Cancer
Cancer
Cancer
Infections
Neurologic (include stroke)
Cancer
Cancer
Cancer
Cancer
Place of death
Home
Home
Home
Hospital: ICU
Residential or nursing home
Home
Hospital (medical ward with palliative care beds)
Residential or nursing home
Home
GP, home care staff + palliative care team
GP, selfemployed nurse
GP, selfemployed nurse
Cardiologist
GP, nurse
GP, selfemployed nurse
GP, nurse
GP, home care staff + palliative care team
Patient involved
Yes
Yes
No (unconscious)
No (unconscious)
Yes
Yes
Yes
No (unconscious)
Yes
Written directives
Yes
No
No
No
No
No
Yes
No
No
Proxies involved
Spouse (NS)
Friend (NS)
Family
Brother (NS)
Child (NS)
Spouse (NS)
Friend (NS)
None
Spouse (NS)
Staff involved
Nursing staff
None
Nursing staff
Doctor + nurses
Nursing staff
Nursing staff
Doctor + nurses
Nursing staff
Doctor + nurses
PSRNT + feeling unworthy
PSRNT
PSRNT
PSRNT
PSRNT + feeling unworthy
Fear of death
Other
Feeling unworthy
PSRNT + fear of death + feeling unworthy
Existing effective palliative therapy
Existing effective palliative therapy
No
Yes
Health care professionals
Decision-making
Reasons for request euthanasia
If request not acceded, reason
Legal ban
tome xx > n8x > xx 2015
End-of-life medical decisions with the explicit intention of hastening death Withholding treatment
No
Yes
Yes
Yes
Yes
Yes
No
To cite this article: Pennec et al. S, et al. Physician-assisted deaths in France: Results from a nationwide survey. Presse Med. (2015), http://dx.doi.org/10.1016/j.lpm.2015.04.020
Main patients' and treatments' characteristics
S. Pennec, F. Riou, J. Gaymu, S. Pontone, R. Aubry
TABLE I
To cite this article: Pennec et al. S, et al. Physician-assisted deaths in France: Results from a nationwide survey. Presse Med. (2015), http://dx.doi.org/10.1016/j.lpm.2015.04.020
References [1]
[2]
[3]
[4]
[5]
[6]
Steck N, Egger M, Maessen M, Reisch T, Zwahlen M. Euthanasia and assisted suicide in selected European countries and US states: systematic literature review. Med Care 2013;51(10):938–44. Chambaere K, Bilsen J, Cohen J, Pousset G, Onwuteaka-Philipsen DB, Mortier F, et al. A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders Belgium: research protocol. BMC Public Health 2008;8(299):1–10. Pennec S, Monnier A, Pontone S, Aubry R. End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 Act of parliament on patients' rights and end of Life. BMC Palliat Care 2012;11 (1):25. ten Have H, Welie JVM. Palliative sedation versus euthanasia: an ethical assessment. J Pain Symptom Manage 2014;47(1):123–36 [Epub 2013/06/ 08]. Bilsen J, Cohen J, Chambaere K, Pousset G, Onwuteaka-Philipsen DB, Mortier F, et al. Medical end-of-life practices under the euthanasia law in Belgium. N Engl J Med 2009;361(11):1119–21. Smets T, Cohen J, Bilsen J, van Wesemael Y, Rurup ML, Deliens L. The labelling and reporting of euthanasia by Belgian physicians: a study of hypothetical cases. Eur J Public Health 2012;22(1):19–26. Sophie Pennec1,2, Françoise Riou3, Joëlle Gaymu1, Silvia Pontone1,4, Régis Aubry5,6 1
French institute for demographic studies, 133, boulevard Davout, 75980 Paris, France 2 Australian demographic and social research institute, Australian national university, Coombs Building #9, Fellows Road, ACTON 2601, ACT, Australia 3 University of Rennes, university hospital Rennes-Pontchaillou, 2, rue Henri Le Guilloux, 35033 Rennes cedex 9 France 4 AP–HP, university hospital Robert Debré, 48 boulevard Sérurier, 75019 Paris, France 5 INSERM CIC 1431, university hospital of Besançon-Jean Minjoz, 25000 Besançon, France 6 Observatoire national de la fin de vie, 25, rue du plateau, 75019 Paris, France Correspondence: Sophie Pennec, French institute for demographic studies [Institut national d'études démographiques], 133, boulevard Davout, 75980 Paris cedex 20, France [email protected] Received 27 January 2015 Accepted 28 April 2015 Available online: http://dx.doi.org/10.1016/j.lpm.2015.04.020 © 2015 Published by Elsevier Masson SAS.
3
Bzd: benzodiazepine; GP: general practitioner; ICU: intensive care unit; PSNRT: pain or other symptoms not relieved by treatment; NS: named surrogate.
At least 1 physical and 1 psychological None At least 1 physical and 1 psychological At least 1 physical and 1 psychological At least 1 physical At least 1 physical and 1 psychological Symptoms last 24 h: intensity > 5/10
Letter to the editor
None
Disclosure of interest: the authors declare that they have no conflicts of interest concerning this article. Funding: the survey this research is based on was funded by the French Institute for Demographic Studies and the French Ministry of health (Direction générale de la santé).
At least 1 physical and 1 psychological
No Midazolam: continuously, a few hours Opioid + KCl Opioid + bzd + Neuroleptic No (Opioid) Opioid + bzd + neuroleptic Opioid Administration of drugs to hasten death
palliative care, and to provide a thorough semantic clarification of the concepts involved in end-of-life medical decisions (table I).
At least 1 physical symptom
Opioid + bzd: continuously, e few days Opioid: discontinuously, a few hours No Opioid + bzd: discontinuously, a few days Opioid: continuously, a few weeks Opioid + bzd: discontinuously, a few hours
tome xx > n8x > xx 2015
Alleviation of symptoms/pain
Opioid + bzd: continuously, a few weeks
No
Opioid + bzd: continuously, a few days
No
Yes
Patient 9 Patient 8 Patient 7
No Yes
Patient 6 Patient 5
Yes Yes Yes Yes
Patient 4 Patient 3 Patient 2 Patient 1
No Withdrawing treatment (and drugs used)
TABLE I (Continued).
No
Physician-assisted deaths in France: Results from a nationwide survey
Physician-assisted deaths in France: Results from a nationwide survey Les décès médicalement assistés en France : résultats d'une enquête nationale The decriminalisation of physician-assisted death for terminally ill patients remains a highly controversial issue of social concern in many countries [1]. In France, the 2005 Patients' Rights and End-of-Life Act maintained the ban on physician-assisted death (but invited doctors to "allow patients to die''). A new law under review introduces the possibility of "deep and continuous sedation until death''. In the 2010 End-of-Life in France survey (EOLF), some physicians reported having "deliberately hastened death, at the patient's request'' which is the Belgian definition of euthanasia. To help inform the current public debate with empirical data, we provide contextual details of these practices outside the law. Methods The 2010 EOLF is a nationwide survey based on a representative sample of 15 000 deaths that occurred in December 2009. It adopted an approach similar to that of the Eureld surveys [2]. Certifying physicians were questioned about the end-of-life of their patient (palliative care, expression of a wish to die, explicit request for euthanasia, professionals involved during the last month of life. . .) and the medical decisions they took just before their patient's death (life-prolonging treatment, withholding or withdrawal of treatments, intensification of alleviation of pain and/or symptoms, administration of drugs to deliberately hasten the death of the patient; intention behind the main decision) [3]. The data collection method guaranteed respondents' total anonymity. A survey among non-respondent physicians shows that non response is not related to the topic of the survey. The participation rate was 40%, which corresponds to 4093 nonsudden deaths. Results According to the findings, 352 patients expressed a wish to die (8.7%, half of them explicitly), including 57 explicit requests for euthanasia (1.3%). In this paper, we consider nine cases where physicians reported "deliberately hastening the death'' of the patients at their request. Six physicians reported acceding to this request, and three others said that they refused initially, but finally took an end-of-life decision with the deliberate purpose
of hastening death, in compliance with the patient's earlier and sometimes repeated request. As shown in table I, most patients were women who died at home. Seven of the nine died of cancer, and one-third of overall deaths were due to cancer. All physicians in charge who reported having acceded to the patient's request for euthanasia were male general practitioners. Most reported having received no continuing education on end-of-life matters. Few received help from a palliative care team. Only one patient was referred to a psychologist or psychiatrist. The reasons put forward by the patients for their request were mainly pain or other symptoms not relieved by treatment, and a feeling of loss of dignity. The last decision-making process always involved the patient if conscious (six cases). In the other cases, it involved the appointed surrogate or family members, except in one case. None of the three unconscious patients had left advance directives. Most of these decisions combined the use of life-ending drugs with withholding or withdrawing life-prolonging treatments, and/or intensifying symptom-alleviating treatments. The drugs used were mostly opioids and/or benzodiazepines. In all cases but one, the last decision-making process involved other health care professionals, but another physician's advice was rarely reported. Life-ending drugs were administered by the physician him/herself, or by a nurse while a doctor was present, and in one case (patient #7) by a nurse alone. Despite having taken the decision to hasten death, only one physician (patient #1) labelled his/her decision "euthanasia''. The expression most often used to describe the last decision was "sedation for distress of a dying patient''. In all cases but one (patient #5), the physician said he/she had been very moved by the death.
Letter to the editor
en ligne sur / on line on www.em-consulte.com/revue/lpm www.sciencedirect.com
Discussion This research shows that while patients quite frequently express a wish to die, explicit requests for euthanasia are quite rare. The few cases where the responding physician's response on medical decisions corresponds to the definition of euthanasia in Belgium show that there is some vagueness in the characterisation of the medical practice by the physicians themselves. This confirms the results presented by ten Have [4], who found that they had trouble labelling their decisions, as is still the case among Belgian physicians even ten years after euthanasia was decriminalised [5,6]. In a context of the current debate about changes to the law, these results show that the most urgent priority is to intensify medical palliative education of all physicians, to develop
1
tome xx > n8x > xx 2015
LPM-2794
2
Letter to the editor
Patient 1
Patient 2
Patient 3
Patient 4
Patient 5
Patient 6
Patient 7
Patient 8
Patient 9
Age (years)
50–69
50–69
50–69
50–69
70–79
70–79
80–89
90 or more
Unknown
Gender
Female
Male
Female
Male
Female
Female
Female
Female
Female
Cause of death
Cancer
Cancer
Cancer
Infections
Neurologic (include stroke)
Cancer
Cancer
Cancer
Cancer
Place of death
Home
Home
Home
Hospital: ICU
Residential or nursing home
Home
Hospital (medical ward with palliative care beds)
Residential or nursing home
Home
GP, home care staff + palliative care team
GP, selfemployed nurse
GP, selfemployed nurse
Cardiologist
GP, nurse
GP, selfemployed nurse
GP, nurse
GP, home care staff + palliative care team
Patient involved
Yes
Yes
No (unconscious)
No (unconscious)
Yes
Yes
Yes
No (unconscious)
Yes
Written directives
Yes
No
No
No
No
No
Yes
No
No
Proxies involved
Spouse (NS)
Friend (NS)
Family
Brother (NS)
Child (NS)
Spouse (NS)
Friend (NS)
None
Spouse (NS)
Staff involved
Nursing staff
None
Nursing staff
Doctor + nurses
Nursing staff
Nursing staff
Doctor + nurses
Nursing staff
Doctor + nurses
PSRNT + feeling unworthy
PSRNT
PSRNT
PSRNT
PSRNT + feeling unworthy
Fear of death
Other
Feeling unworthy
PSRNT + fear of death + feeling unworthy
Existing effective palliative therapy
Existing effective palliative therapy
No
Yes
Health care professionals
Decision-making
Reasons for request euthanasia
If request not acceded, reason
Legal ban
tome xx > n8x > xx 2015
End-of-life medical decisions with the explicit intention of hastening death Withholding treatment
No
Yes
Yes
Yes
Yes
Yes
No
To cite this article: Pennec et al. S, et al. Physician-assisted deaths in France: Results from a nationwide survey. Presse Med. (2015), http://dx.doi.org/10.1016/j.lpm.2015.04.020
Main patients' and treatments' characteristics
S. Pennec, F. Riou, J. Gaymu, S. Pontone, R. Aubry
TABLE I
To cite this article: Pennec et al. S, et al. Physician-assisted deaths in France: Results from a nationwide survey. Presse Med. (2015), http://dx.doi.org/10.1016/j.lpm.2015.04.020
References [1]
[2]
[3]
[4]
[5]
[6]
Steck N, Egger M, Maessen M, Reisch T, Zwahlen M. Euthanasia and assisted suicide in selected European countries and US states: systematic literature review. Med Care 2013;51(10):938–44. Chambaere K, Bilsen J, Cohen J, Pousset G, Onwuteaka-Philipsen DB, Mortier F, et al. A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders Belgium: research protocol. BMC Public Health 2008;8(299):1–10. Pennec S, Monnier A, Pontone S, Aubry R. End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 Act of parliament on patients' rights and end of Life. BMC Palliat Care 2012;11 (1):25. ten Have H, Welie JVM. Palliative sedation versus euthanasia: an ethical assessment. J Pain Symptom Manage 2014;47(1):123–36 [Epub 2013/06/ 08]. Bilsen J, Cohen J, Chambaere K, Pousset G, Onwuteaka-Philipsen DB, Mortier F, et al. Medical end-of-life practices under the euthanasia law in Belgium. N Engl J Med 2009;361(11):1119–21. Smets T, Cohen J, Bilsen J, van Wesemael Y, Rurup ML, Deliens L. The labelling and reporting of euthanasia by Belgian physicians: a study of hypothetical cases. Eur J Public Health 2012;22(1):19–26. Sophie Pennec1,2, Françoise Riou3, Joëlle Gaymu1, Silvia Pontone1,4, Régis Aubry5,6 1
French institute for demographic studies, 133, boulevard Davout, 75980 Paris, France 2 Australian demographic and social research institute, Australian national university, Coombs Building #9, Fellows Road, ACTON 2601, ACT, Australia 3 University of Rennes, university hospital Rennes-Pontchaillou, 2, rue Henri Le Guilloux, 35033 Rennes cedex 9 France 4 AP–HP, university hospital Robert Debré, 48 boulevard Sérurier, 75019 Paris, France 5 INSERM CIC 1431, university hospital of Besançon-Jean Minjoz, 25000 Besançon, France 6 Observatoire national de la fin de vie, 25, rue du plateau, 75019 Paris, France Correspondence: Sophie Pennec, French institute for demographic studies [Institut national d'études démographiques], 133, boulevard Davout, 75980 Paris cedex 20, France [email protected] Received 27 January 2015 Accepted 28 April 2015 Available online: http://dx.doi.org/10.1016/j.lpm.2015.04.020 © 2015 Published by Elsevier Masson SAS.
3
Bzd: benzodiazepine; GP: general practitioner; ICU: intensive care unit; PSNRT: pain or other symptoms not relieved by treatment; NS: named surrogate.
At least 1 physical and 1 psychological None At least 1 physical and 1 psychological At least 1 physical and 1 psychological At least 1 physical At least 1 physical and 1 psychological Symptoms last 24 h: intensity > 5/10
Letter to the editor
None
Disclosure of interest: the authors declare that they have no conflicts of interest concerning this article. Funding: the survey this research is based on was funded by the French Institute for Demographic Studies and the French Ministry of health (Direction générale de la santé).
At least 1 physical and 1 psychological
No Midazolam: continuously, a few hours Opioid + KCl Opioid + bzd + Neuroleptic No (Opioid) Opioid + bzd + neuroleptic Opioid Administration of drugs to hasten death
palliative care, and to provide a thorough semantic clarification of the concepts involved in end-of-life medical decisions (table I).
At least 1 physical symptom
Opioid + bzd: continuously, e few days Opioid: discontinuously, a few hours No Opioid + bzd: discontinuously, a few days Opioid: continuously, a few weeks Opioid + bzd: discontinuously, a few hours
tome xx > n8x > xx 2015
Alleviation of symptoms/pain
Opioid + bzd: continuously, a few weeks
No
Opioid + bzd: continuously, a few days
No
Yes
Patient 9 Patient 8 Patient 7
No Yes
Patient 6 Patient 5
Yes Yes Yes Yes
Patient 4 Patient 3 Patient 2 Patient 1
No Withdrawing treatment (and drugs used)
TABLE I (Continued).
No
Physician-assisted deaths in France: Results from a nationwide survey
