Overview of Euthanasia and Physician-Assisted Suicide Practices and Challenges

Euthanasia and physician-assisted suicide
Overview of practices and current challenges
Marie Nicolini MD MSc
Postdoctoral fellow
Department of Bioethics
NIH
Disclaimer
The views expressed in this talk are my own.
They do not represent the position or policy
of the NIH, DHHS, or US government
About me
2005-2012: Medical school (KU Leuven, Belgium)
2012-2017: Residency in adult psychiatry (KU Leuven)
2012-2014: Erasmus Mundus Master in Bioethics
2015-2016: fMRI research in patients with dementia
2017-2018: Visiting
scholar, Georgetown
University
2018-Present: NIH
Postdoctoral fellow,
Department of bioethics
Why this topic?
Timely, global issue
Remains controversial
Rapidly changing laws
Some terms and definitions
Often used terms
Euthanasia and/or assisted suicide (EAS
)
Physician-assisted suicide (PAS)
Physician-assisted death (PAD)
Physician aid-in-dying
Death with dignity
Hastened death
Medical assistance/aid-in-dying (MAID)
 
Used in Europe &
international
literature
 
Used in the US
 
Used in Canada
Some terms and definitions
But all have detractors because
Not all places require physicians
‘Suicide’ has descriptive as well as negative meaning
Palliative care can be ‘aid in dying’
PAD does not distinguish between euthanasia and PAS
Etc. etc.
Overview for today
Part 1: Introduction
Different end-of-life options
EAS around the world
Part 2: The practice in the Netherlands
EAS for psychiatric disorders
EAS for dementia
Part 3: Implications for the US
Debate about EAS in the non-terminally ill
Conclusion & future directions
Overview for today
Part 1: Introduction
Different end-of-life options
EAS around the world
Part 2: The practice in the Netherlands
EAS for psychiatric disorders
EAS for dementia
Part 3: Implications for the US
Debate about EAS in the non-terminally ill
Conclusion & future directions
Part 1: Introduction
Different end-of-life options
Refusal of treatment
Withdrawal or withholding life-sustaining treatment
Pain relief with potential life-shortening effect
Terminal/palliative sedation
Voluntarily stopping eating and drinking (VSED)
Physician-assisted suicide
Voluntary active euthanasia
[Involuntary and non-voluntary euthanasia]
Griffith, 2008
Different end-of-life options
Griffith, 2008
Different end-of-life options
EAS
Euthanasia in 96% of Dutch EAS cases
RTE,2018
Overview for today
Part 1: Introduction
Different end-of-life options
EAS around the world
Part 2: The practice in the Netherlands
EAS for psychiatric disorders
EAS for dementia
Part 3: Implications for the US
D
ebate about EAS in the non-terminally ill
Conclusion & future directions
Historical context in the US
Vacco v Quill (1997
) US Supreme court ruling 
1) drew sharp distinction between withdrawal of life-
sustaining treatment and PAS
2) no need 
for PAS, since there is terminal sedation
3) 
no constitutional right 
to PAS, hence no
constitutional protection
Leaving it up to the states to regulate
Oregon first US state to legalize PAS in 1997
United States: 9 states + DC
 
1997 Oregon 
(Death with Dignity Act)
2009 Montana (
PAD lawful by State Supreme Court ruling)
2009 Washington 
(Washington Death with Dignity Act)
2013 Vermont 
(Vermont Patient choice and Control at End-of-Life Act)
2016 California 
(End-of-Life Option Act)
2016 Colorado 
(Colorado End of Life Options act)
2016 D.C. 
(Death with Dignity Act)
2018 Hawaii 
(Our Care, Our Choice Act)
2019 New Jersey 
(Medical Aid-in-Dying for the Terminally Ill Act)
2020 Maine 
(Maine Death with Dignity Act)
United States: 9 states + DC
Legal criteria
For 
terminal illness 
only: 6 months of expected
life or less
End of life boundary
Medical boundary
No requirement of assessment of suffering
Medically 
assisted
 death: prescription for
medication
Similar in past proposed UK bills
 
0.46% of all deaths in Oregon
90% in hospice
Most 65 years or older (79.2%), and most had cancer (62.5%)
97% white, 1.2% Asian
55% with post-high school degree
Top 3 reasons for request in Oregon
(As reported by doctors; DWDA report 2018)
 
1) “Loss of autonomy” (91.7%)
2) “Decreasing ability to participate in
activities that made life enjoyable” (90.5%)
3) “Loss of dignity” (66.7%)
 
Stable over the years, across jurisdictions also.
California End of Life Option Act
2017 data, N=374 deaths
 
90+% over 60 y old
Race and ethnicity:
89% white 
  
[cf 39% of population]
5.1% Asian
  
[cf 13%]
3.9% Hispanic 
 
[cf 39%]
0% Black 
  
[cf 6%]
49% with some post high school degree
Different rationales for PAD/EAS
As an end of life issue
As an issue of relief of suffering
As a matter of right to self-determination
Why is it important to know about the
different rationales?
To understand
the different laws across jurisdictions
why different jurisdictions allow PAD/EAS in
different populations
the current debates in Europe and Canada
the impact these debates may have for the US
1997
Oregon
2002
The Netherlands
Belgium
2009
Montana
Washington
2016
California
Colorado
D.C
2013 
Vermont
2016
Canada
2017
Australia 
(Victoria)
United States
Countries outside the US
2018
Hawaii
2019
New Jersey
2020
Maine
2015
Columbia
Legalization of PAD/EAS
1942 
Switzerland
//
2019 
Western 
Australia
Countries outside the US
Columbia
Canada
Australia
Switzerland
The Netherlands & Belgium
Columbia (2015)
In response to 2 court rulings in 2015
Euthanasia only
Terminal illness 
required
Prospective permission required from review
board
Canada (2016)
Voluntary request without external pressure
Grievous and irremediable
 medical condition
a. having a serious and incurable illness, disease or disability; and,
b. being in an advanced state of irreversible decline in capability; and,
c. experiencing enduring physical or psychological 
suffering 
[…]
 
that is 
intolerable
 to the
person and 
cannot be relieved 
in a manner that 
they consider acceptable
; and,
d. where the person’s 
natural death has become reasonably foreseeable
Victoria, Australia (2017)
Law allows both PAS and euthanasia
Terminal illness 
(6months)
with exception of neurodegenerative disorder (12mo
prognosis)
Suffering 
that 
cannot be relieved 
in a manner 
tolerable
to person
Switzerland (1942)
Assisted suicide decriminalized in Penal Code
Requirements
Person has a consistent wish to die
Person has decisional capacity
Assistance is 
not selfishly motivated
 
No
 unbearable suffering
 requirement 
BUT
 in practice yes
Guidelines specify there should be unbearable suffering
The Netherlands & Belgium (2002)
Both countries have very similar key legal criteria
-
Voluntary, well-considered request
-
Unbearable suffering
-
Medically futile
/no reasonable alternative
Suffering-based
 jurisdictions
Eligibility Criteria for EAS: Variability Across Jurisdictions
*Deemed unconstitutional by Quebec Superior Court in September, 2019
The Netherlands & Belgium
EAS are similar…
But have different legal history and justification
Dutch EAS law derived from case law over 25y
Along with professional organizations, advisory bodies
Belgian EAS law consequence of a political process
Was primarily intended to modify physicians’ behavior
The Netherlands & Belgium (2002)
Both make no distinction between type of medical
condition
Hence, allow for EAS for nonterminal illness, e.g.
EAS on the 
sole basis of a psychiatric disorder
(psychiatric euthanasia)
EAS on the 
sole
 
basis of dementia
But these two applications remain 
controversial
2019-2020: First legal prosecutions
First prosecutions since law was enacted in 2002 relate to
psychiatric and dementia EAS
Netherlands: advance directive case (dementia EAS)
85y old woman: current Dutch criminal court trial (August, 2019)
Belgium: 2 psychiatric EAS cases
G. De Troyer (64) currently investigated by European Court for Human Rights
Tine Nys (38): currently investigated by Belgian criminal court (2020)
Godelieve De Troyer (64)
Tine Nys (38)
Overview for today
Part 1: Introduction
Different end-of-life options
EAS around the world
Part 2: The practice in the Netherlands
EAS for psychiatric disorders
EAS for dementia
Part 3: Implications for the US
Debate about EAS in the non-terminally ill
Conclusion & future directions
A closer look…EAS in the Netherlands
Why focus on the Netherlands?
Long 
history
: prior to the EAS law in 2002, the
practice was decriminalized in 1987
Law based on relevant 
series of cases
More 
transparent
 oversight system which allow
for empirical research
Legal criteria under the Dutch EAS
Law of 2002
Voluntary and well-considered request
Unbearable suffering 
with 
no prospect of improvement
Informing the patient about prospects
No reasonable alternative
Physician consulted at least one independent physician
Physician provided assistance with due medical care
Legal precedents in the Netherlands
1984 Schoonheim case ruling
Principle of necessity can justify physician-assisted
suicide
1994 Chabot case ruling
The source of patient suffering is not relevant
Psychiatric patients can make a competent request
 Case lead to EAS on the sole basis of a psychiatric
disorder to become effectively legal in 1997
Legal precedents in the Netherlands
2002 Brongersma case ruling
Principle of necessity does not apply to “tired of
life” case
Suffering must be based on a medical condition
EAS for non-terminal disorders
 
Lots of debate.. but little empirical evidence
EAS for psychiatric disorders (“psychiatric EAS”)
EAS for dementia
 
Specific challenges in relation to eligibility criteria
Interpreting irremediability
Interpreting unbearable suffering
Documentary
24 & ready to die 
| The Economist (2015)
https://www.youtube.com/watch?v=SWWkUzkfJ4M
Psychiatric EAS: Overview
General background
Patient characteristics
Main issues in psychiatric EAS evaluations
The challenge of personality disorders
About 1% of all EAS cases in the NL
RTE, 2018
Note: About 2.4% in Belgium (2018)
1994
Chabot
 case
2002
Dutch and Belgian 
EAS Laws
2010 
First cases 
published by RTE
*
2018 Council 
of Canadian 
Academies 
Report
2016 
Canada
legalized
MAID
#
 
 
* 
RTE: Dutch Euthanasia Review Committees
# 
Medical Assistance in Dying
Psychiatric EAS timeline
2015-2016
First empirical papers
Belgium& the
Netherlands
2012
Dutch 
End of life 
Clinic
Some background on the Dutch system
Regional Euthanasia 
Review Committees 
(RTE)
Founded in 1999
All cases must be 
reported
 to the RTE
Publish a 
selection of cases 
on website since 2010
5 RTEs with the goal of providing uniform guidance
Cases important for the development of standards
and provide transparency and auditability
Published a first 
Code of Practice 
in 2015
Some background on the Dutch system
End of Life Clinic
Organization founded in 2012
Provides EAS evaluation for persons whose
physician refuses to perform EAS
Most patients who receive EAS at the End of Life
clinic are non-terminally ill
Sept 2019 renamed ExpertiseCenter Euthanasia
Estimated numbers of Dutch
psychiatric EAS cases
About 50% of psychiatrists ever received explicit requests.
Majority (60-75%) of psychiatric EAS cases are performed
at the 
End of Life Clinic
(Onwuteaka et al 2017; RTE, 2016)
Annual Reported Dutch EAS cases
 2016-2018
NB: Occasional cases until 2010, with steady rise since 2011.
RTE, 2018
Reported Psychiatric EAS cases
in Belgium 2014-2018
FCEC, Belgium 
Psychiatric EAS remains controversial even in the
Netherlands…
Large majorities of Dutch public and physicians support
EAS in physical, terminal disease (>80%)
Yet only a minority of public and doctors approve of
psychiatric EAS (28-35%)
37% of psychiatrists 
can conceive performing EAS
decrease from 47% in 1995
Bolt, 2015; Onwuteaka et al 2017
Psychiatric EAS: Overview
General background
Patient characteristics
Main issues in psychiatric EAS evaluations
The challenge of personality disorders
Patient characteristics in the NL
First empirical study of 66 cases (2011-2014)
Psychiatric diagnosis
Depression
 the most common diagnosis (in 73%)
Personality disorders 
in 52%
Psychosis of some form in 17 of 66 (26%)
Note the variety of disorders
Autism
Prolonged grief
Neurocognitive impairment
Kim et al. 2016 JAMA Psych
Women request and receive
psychiatric EAS 2X more than
men.
Dutch psychiatric EAS cases
are older than Belgian cases.
Social isolation/loneliness:
[t]he patient was an utterly
lonely man whose life had
been a failure.
Kim et al 2016 JAMA Psych
Belgian study: 100 
consecutive requestors
 of
psychiatric EAS
Thienpont et al. 2015 BMJ Open
Reasons for requesting psychiatric EAS
 
Qualitative study of ‘testimonials’ of 26 Belgian
psychiatric patients
Reasons given for unbearable suffering 
(
5 domains)
Medical symptoms
Intrapersonal suffering (e.g. traumatic history)
Interpersonal interactions (e.g. loneliness, lack of support)
External factors (e.g. socioeconomic issues)
Existential suffering (e.g. fear of loss of control)
Verhofstadt et al . 2017 BrJ Psyc
Case descriptions: brief examples
Some definitions
EAS physician
: the physician who evaluates and
performs EAS
Official EAS 
consultant
: the independent physician
consultant as required by law
Second opinion 
consultant: consulted by EAS physician
regarding case
SCEN
 (Support and Consultation on Euthanasia in the
Netherlands): specially trained physicians, usually
function as official EAS consultant
Case: Woman with prolonged grief (2011)
70-80y old
Lost her husband in 2009
Previously made a decision with husband
that neither would live alone if one died
After husband’s cancer diagnosis, asked for
dual EAS, but only husband was given EAS
about a year prior
Case: Woman with prolonged grief (2011)
Consultant: “The patient said that the love between her
and her husband had been 
very special
. They had
always been together...  They believed it was a waste of
time to spend time with others at parties, receptions,
etc. The patient and her husband were fully focused on
each other…”
Treatment 
ineffective
“two different antidepressants… adverse effects,
and the lack of any effect on the patient’s feelings”
“mourning and grief counseling… had no results.”
Case: Woman with prolonged grief (2011)
1
st
 consultant
“The patient wanted to die in a controlled,
humane manner. If that was not possible she
would commit suicide. This was 
not a threat but
a fact
.”
“The patient 
did not feel depressed at all
. She
ate, drank and slept well. She followed the news
and undertook activities.”
Case: Woman with prolonged grief (2011)
2
nd
 consultant
“It is never possible to be absolutely certain if
pathological grief will disappear when time
passes, but due to the 
intensity of the grief 
a
year after the loved one died, the 
limited social
network
, and the persisting wish of the patient
to no longer live without her husband, recovery
seemed less likely.”
Case: man in his 30s (2016)
Schizoaffective disorder, personality disorder
(mixed cluster B and C) and OCD-traits
Received “almost the entire treatment
protocol for schizoaffective depression”
“hospitalized multiple times, had tried many
types of medication and undergone ECT”
Case: man in his 30s (2016)
Suffering consisted of “an empty feeling in
his head” and “not being able to think”.
The patient, who had been an intelligent,
sociable man and suffered from his loss of
abilities, described “a feeling of painful
emptiness and intense pain in the soul,
which he couldn’t bear and which was
overwhelming”.
Case: man in his 30s (2016)
Evaluation process
Treating physicians refused to perform EAS
Patient requested EAS to EAS physician (non-
psychiatrist), who consulted an independent
psychiatrist
Independent psychiatrist found there were remaining
pharmacological and psychotherapeutic options
Case: man in his 30s (2016)
EAS physician
“acknowledged that these were possible in theory,
but that with the patient’s 
lack of motivation 
these
couldn’t be forced on the patient”
and that “psychotherapeutic treatments would have
little chance of success because of the patient’s low
coping capacity”.
EAS physician then consulted a SCEN-physician
(non-psychiatrist) 2 weeks prior to death, who
concluded due care were met
Psychiatric EAS: Overview
General background
Patient characteristics
Main issues in psychiatric EAS evaluations
The challenge of personality disorders
Main issues related to the evaluation
of psychiatric EAS requests
Treatment history and refusals
Assessment of irremediability
EAS evaluation process
Decision-making capacity
Disagreements among consultants
Kim et al. 2016 JAMA Psych
Treatment history and refusals
2/3 of patients had extensive treatment
histories (>10y)
But not always the case
56% (37 of 66) 
refused
 at least some treatment
In 73% patients with depression: half had tried
electroconvulsive treatment
20% no history of psychiatric hospitalization
Kim et al 2016 JAMA Psych
Assessment of Irremediability
Dutch Psychiatric Association Guidelines state that all
evidence-based treatments should be tried (Nvvp, 2009)
Patients need not to go through ‘every conceivable form of
treatment’ but they do not meet the requirement if they
refuse ‘a reasonable alternative’ (Code of Practice, 2015)
 
 How to interpret “irremediability”? 
Kim et al. 2016 JAMA Psych
 EAS evaluation process
In 41% the EAS physician was a psychiatrist
In 59% psychiatrist was one of the consultants
24% had disagreement among consultants
Decision-making capacity discussions
Functional model of decision-making capacity defines 4
abilities 
(Grisso &Appelbaum)
Understand
Reason
Appreciate
Communicate
34 (51%)— 
global
 
assertions
 of capacity
11 (17%)— simple assertion that a criterion met
21 (32%)— 
some
 direct evidence given for capacity ability
Only 5 of 66 cases (
8%) mention all 4 relevant abilities
.
Doernberg et al. Psychosomatics, 2016
Disagreement among consultants
24% (16 of 66 cases) had disagreement
among consultants
In half of these cases, GP consultants’
opinion taken over psychiatric consultants’
opinion.
Psychiatric EAS: Overview
General background
Patient characteristics
Main issues in psychiatric EAS evaluations
The challenge of personality disorders
The challenge of personality disorders
Why personality disorders?
Common (>50%) among psychiatric EAS cases
Sometimes difficult patient-physician interactions
Sometimes not considered a “true” diagnosis by
clinicians
Suicidal behavior is common
Nicolini et al. 2019. Psychol Med
Media coverage of anecdotal cases
Case: woman with PTSD, borderline
personality disorder & depression
A woman in her 30s, multiple suicide attempts
She underwent “various forms of drug treatments and electroconvulsive
therapy, all with mediocre results”.
The patient’s suffering consisted of very low self-esteem, “continuous
negative thoughts and 
negative judgments about herself
” and
omnipresent “thoughts that she was not worthy to live, could not handle
life, and wanted to die”. She “experienced nightmares and relived her
childhood traumas”.
A year before her death, after she had made a euthanasia request to
her previous therapist, the EAS physician (psychiatrist) took over the
treatment with regard to the euthanasia process.
Case: woman with PTSD, borderline
personality disorder & depression
A second opinion psychiatrist was consulted. Other therapeutic
options were discussed, including mentalization based therapy
(MBT), but the patient refused further treatment.
The physician “agreed with her as her 
personality structure 
was
deemed 
not strong enough 
to endure such a drastic treatment
(MBT) without her suicidal tendencies or depression getting out
of control”.
The physician then consulted an independent (primary care)
SCEN-consultant, who visited the patient twice within a month
prior to her death. The consultant found that the alternatives
mentioned were no longer realistic and concluded that due care
criteria were met.
EAS and Personality disorders
Challenges in EAS evaluations
Frequent feelings of 
helplessness, hopelessness
and suicidal thoughts, difficult to distinguish from
EAS requirement of “unbearable suffering”
Complex 
interpersonal dynamics
(Counter)transference
EAS and Personality disorders
Results
28%
 had not tried psychotherapy
30% of physicians performing EAS were
psychiatrists
Physicians used their 
own feelings 
to determine
whether the patient’s suffering meets the legal
requirements (use of the word “palpable” almost
exclusively with personality disorder patients)
Overview for today
Part 1: Introduction
Different end-of-life options
EAS around the world
Part 2: The practice in the Netherlands
EAS for psychiatric disorders
EAS for dementia
Part 3: Implications for the US
Debate about EAS in the non-terminally ill  
Conclusion & future directions
EAS in patients with dementia
Relatively little is known about the practice
Cases started slowly increasing since 2011
First empirical study looking at Dutch cases
published in 2019
First Dutch 
criminal
 investigation since 2002
law involves a dementia EAS case
Why study dementia EAS?
Poses unique challenges
Assessing competence
Assessment of unbearable suffering
Frequently debated
Scholarly literature
Media
Professional organizations
Assessing competence
According to RTE guidance, a person should
Be 
able to communicate 
intelligibly about his request for
euthanasia
Understand
 the relevant medical and other information
Have 
insight into his condition 
(can assess his situation
and the implications of euthanasia or alternative
treatment)
Able to 
make it clear why he wants euthanasia 
to be
performed
Functional model of capacity
Abilities
 focused 
(Appelbaum&Grisso)
Threshold sensitive to consequences
Decision-specific
Dementia EAS in the Netherlands
One of few jurisdictions allowing dementia EAS
Only one that allows EAS in 
late-stage
 dementia
Experience
2011-2018: 834 reported cases
US equivalent of 16 000 cases
Advance requests in Dutch EAS law
Article 2.2. Advance requests possible if
Age 16 or over
Was previously deemed capable of making a
reasonable appraisal of his own interests
Has made a written declaration requesting that his
life be terminated
Advance euthanasia directives (AED)
Can satisfy informed consent requirement for
incompetent patients
Two types of requests
Concurrent request
Patient deemed competent to request EAS
Presumably in ‘early stage dementia’
Advance request
Patient deemed incompetent to request EAS
AED used for informed consent
Presumably ‘late stage dementia’
Dementia disease stage
The RTE divides cases in early and late stage
Early-stage dementia
‘Phase in which the patient generally still has
insight into the disease and symptoms’
Late-stage dementia
‘Phase where it is uncertain whether they are
still decisionally competent regarding their
request’
Analysis of 75 cases
Concurrent requests (n=59)
Advance requests (n=16)
Most public discussions are about advance
requests, little is known about challenges
associated with concurrent requests
Case: man in his 70s (2018)
Diagnosis of mild cognitive impairment in
2013 and of Alzheimer’s disease in 2015
Steep decline 6mo prior to death
Had talked about EAS for family and his GP
1week prior to death: patient asked to
implement EAS
Case: man in his 70s (2018)
Used the terms “last bus ride” and “end time”
SCEN consultant
“A real 
conversation
 with the patient was 
no longer
possible
 and patient could no longer clearly state his
euthanasia wish. In a way, the patient realized that it
was about dying. Patient made an 
incomprehensible,
deplorable, searching impression
.”
Patient “no longer competent”
Case: man in his 70s (2018)
SCEN consultant: due care met
the patient’s situation fully corresponded with his
euthanasia wish” 
expressed in previous statements
and “documented conversations with his family
doctor and wife”
“it is reasonable to assume” that the “euthanasia
wish of the patient has not changed.”
Case: man in his 70s (2018)
RTE asked the EAS physician and SCEN consultant
why a specialist was not consulted
Reply EAS physician
“patient was not yet incapacitated. Life did not
pass him by, 
he did not vegetate
Reply SCEN consultant
“felt that the patient was still 
sufficiently aware 
of
his situation.”
Concurrent request evaluations
Challenges assessing capacity
15% (9/59) were deemed incompetent at some
point
12% had ambiguous requests requiring
interpretation
15% AEDs were used to help assess the voluntary
and well-considered criterion
12% involved using body language to assess
competence
Concurrent request evaluations
Challenges with assessing capacity
One or more of these were present in about a third
(
31%
,
 
18/59) of concurrent request cases
Inconsistent
 with functional model of capacity
Discrepancy between existing guidance and practice
Possible explanations
Physicians use a lower threshold for capacity
while using a functional model
Physicians use another standard/model for
assessing capacity
Primarily based on authenticity
But at odds with RTE’s guidance
Concurrent requests
Practice appears inconsistent with guidance
Concurrent cases 
not always “early-stage”
Implications: RTE requires consulting an
expert only for late-stage dementia
Advance request evaluations
Challenges
Difficulties interpreting the advance directive
Triggers often lack specificity
Unbearable suffering?
Difficult to assess in late stage dementia
25% did not meet due care criteria
Implementation
Patients often unaware of implementation
Dementia EAS case: first criminal
prosecution?
Dementia EAS case: first criminal
prosecution?
74-y old with Alzheimer’s disease received euthanasia in 2016
Had symptoms for past 9 years, diagnosed 4y earlier
Wrote an advance directive (AD) shortly after diagnosis
“I want to be able to decide (when to die) while still in my senses
and 
when I think the time is right
Revised AD 1y later adding
“when the 
quality of my life 
has become so 
poor
, I would like my
request for euthanasia to be honored”
Problems with interpreting the
advance directive
Did the patient have capacity when she drafted the AED?
Ambiguous AED
What does “when the time is right” mean?
Little evidence that she weighed pros and cons of
request
Issues at the moment of EAS
implementation
 
The patient received 
premedication
 prior to her EAS
The patient showed an 
initial reaction 
(‘shock’?,
‘refusal’?) and was held down by the physician and
family
 
For these reasons, the RTE ruled that 
due care
criteria were NOT met
Dutch legal and disciplinary review system
What happened next?
Central 
Disciplinary College 
for Healthcare
 turned reprimand issued previously into a warning
Main question the 
Criminal Court 
assessed
To what extent should a doctor (try to) talk to her
incapacitated patient prior to performing EAS?
Other relevant ethical questions
Can premedication be used? If so, when?
What constitutes a meaningful refusal of an
incapacitated patient?
Ruling Dutch Criminal Court
(September 2019)
To what extent should a doctor (try to) talk to her
incapacitated patient prior to performing EAS?
“The court does not see why the accused should
have had a discussion with this incompetent and
deeply demented patient about how the euthanasia
was going to be implemented. Such a conversation
would not only be useless […] but it could have
provoked even greater agitation and unrest”
Ruling Dutch Criminal Court
(September 2019)
With regard to the patient’s reaction at the moment of
EAS implementation
“The patient’s physical and verbal reactions were
according to expert [X] reflexes that were not
conscious”
Conclusion
“The court relieves the accused of all legal proceedings”
Overview for today
Part 1: Introduction
Different end-of-life options
EAS around the world
Part 2: The practice in the Netherlands
EAS for psychiatric disorders
EAS for dementia
Part 3: Implications for the US
Debate about EAS in the non-terminally ill
Conclusion & future directions
Implications for the US
Dementia and end-of-life
Debates about advance directives in dementia
care e.g. stopping spoon-feeding
Debates about where to draw the line in EAS
are relevant for the US
Currently restricted to the terminally ill in the US
Should the terminal disease requirement be
upheld?
EAS for nonterminal illness in Canada?
2106 Medical assistance in dying law in
Unbearable suffering
Proximity to death requirement
2018 Canadian Council issues report on
psychiatric EAS – no consensus
2019 Truchon case in Quebec (September)
Canada: the Truchon court case
Truchon case & Implications
Judge ruled the proximity to death
requirement unconstitutional
EAS becomes effectively legal for
nonterminal illness in Quebec
Parliament will most likely enact a new or
expanded law that applies to all of Canada
1994
Chabot
 case
2002
Dutch and Belgian 
EAS Laws
2010 
First cases 
published by RTE
*
2018 Council 
of Canadian 
Academies 
Report
2016 
Canada
legalized
MAID
#
 
 
* 
RTE: Dutch Euthanasia Review Committees
# 
Medical Assistance in Dying
Psychiatric EAS in whole of Canada as of 2020?
2015-2016
First empirical papers
Belgium& the
Netherlands
2019 
Truchon
 case
2020?
What does this mean for the US
Developments in Canada are important for all
other jurisdictions where EAS is limited to the
terminally, physically ill
US states
Australia
Columbia
Other jurisdictions debating legalization of EAS
What does this mean for the US?
Unlike the European countries, Canada is an
example of a jurisdiction that had some form
of limitation to terminal disease
Relevant ethical/policy question for
jurisdictions that allow for physician-assisted
suicide
 What are arguments pro/con allowing EAS in
the non-terminally ill?
Overview for today
Part 1: Introduction
Different end-of-life options
EAS around the world
Part 2: The practice in the Netherlands
EAS for psychiatric disorders
EAS for dementia
Part 3: Implications for the US
Debate about EAS in the non-terminally ill
Conclusion & future directions
Conclusions and future directions
Legal landscape is rapidly evolving
EAS for nonterminal illness, especially
psychiatric disorders and dementia, poses
specific challenges
The US have an opportunity to learn and make
own conclusions from the practice in Europe as
more data emerge
Acknowledgments
Scott Y.H. Kim, MD, PhD (NIH)
*
Chris Gastmans, PhD (KU Leuven)
Dominic Mangino, MS, RRT (NIH)
*
Madison Churchill, BA
NIH Bioethics Department
KU Leuven Center for Biomedical Ethics and Law
*Some slides were a kind courtesy of Scott Kim and Dominic
Mangino and were adapted for the purpose of this talk
Thank you!
 Questions?
marie.nicolini@nih.gov
References
Quill et al. 
(1997) Palliative options of last resort: a comparison of voluntarily stopping eating and drinking,
terminal sedation, physician-assisted suicide, and voluntary active euthanasia. 
JAMA
Griffith et al
. (2008) Euthanasia and Law in Europe. Hart Publishing.
Kim et al. 
(2016) Euthanasia and assisted suicide of patients with psychiatric disorders in the Netherlands
2011 to 2014. 
JAMA Psychiatry
Verhofstadt et  al. 
(2017) When unbearable suffering incites psychiatric patients to request euthanasia:
qualitative study. 
British Journal of Psychiatry
Thienpont et al. 
(2015) Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering
from psychiatric disorders: a retrospective, descriptive study. 
BMJ Open
Doernberg et al
. (2016) Capacity evaluations of psychiatric patients requesting assisted death in the
Netherlands. 
Psychosomatics
Nicolini et al. 
(2019) Euthanasia and assisted suicide of persons with psychiatric disorders: the challenge of
personality disorders. 
Psychological Medicine
RTE 
Regional Euthanasia Review Committees Annual Report. Available at
https://english.euthanasiecommissie.nl/the-committees/annual-reports
Onwuteaka-Philipsen et al. 
(2017) Third review of the Dutch Termination of Life on Request and Assisted
Suicide Act. DenHaag:ZonMw.
Mangino et al. (2019) 
Euthanasia and Assisted Suicide of Persons With Dementia in the Netherlands. 
Am J
Geriatric Psychiatry
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This presentation by Dr. Marie Nicolini provides an overview of current practices and challenges related to euthanasia and physician-assisted suicide. Covering the definitions, terms, and controversies surrounding these practices, the talk emphasizes the evolving legal landscape and the global relevance of this complex bioethical issue.

  • Euthanasia
  • Physician-assisted suicide
  • Bioethics
  • Medical ethics
  • Global issue

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  1. Euthanasia and physician-assisted suicide Overview of practices and current challenges Marie Nicolini MD MSc Postdoctoral fellow Department of Bioethics NIH BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  2. Disclaimer The views expressed in this talk are my own. They do not represent the position or policy of the NIH, DHHS, or US government BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  3. About me 2005-2012: Medical school (KU Leuven, Belgium) BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  4. 2012-2017: Residency in adult psychiatry (KU Leuven) 2012-2014: Erasmus Mundus Master in Bioethics 2015-2016: fMRI research in patients with dementia BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  5. 2017-2018: Visiting scholar, Georgetown University 2018-Present: NIH Postdoctoral fellow, Department of bioethics BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  6. Why this topic? Timely, global issue Remains controversial Rapidly changing laws BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  7. Some terms and definitions Often used terms Euthanasia and/or assisted suicide (EAS Euthanasia and/or assisted suicide (EAS) Physician-assisted suicide (PAS) Physician-assisted death (PAD) Physician aid-in-dying Death with dignity Hastened death Medical assistance/aid-in-dying (MAID) Used in Europe & international literature Used in the US Used in Canada BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  8. Some terms and definitions But all have detractors because Not all places require physicians Suicide has descriptive as well as negative meaning Palliative care can be aid in dying PAD does not distinguish between euthanasia and PAS Etc. etc. BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  9. Overview for today Part 1: Introduction Part 1: Introduction Different end-of-life options EAS around the world Part 2: The practice in the Netherlands Part 2: The practice in the Netherlands EAS for psychiatric disorders EAS for dementia Part 3: Implications for the US Part 3: Implications for the US Debate about EAS in the non-terminally ill Conclusion & future directions BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  10. Overview for today Part 1: Introduction Part 1: Introduction Different end-of-life options EAS around the world Part 2: The practice in the Netherlands Part 2: The practice in the Netherlands EAS for psychiatric disorders EAS for dementia Part 3: Implications for the US Part 3: Implications for the US Debate about EAS in the non-terminally ill Conclusion & future directions BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  11. Different end-of-life options General category Specific category Normal medical practice Refusal of treatment Withholding/withdrawal futile life-sustaining treatment Pain relief with potential life-shortening effect Palliative/terminal sedation Tolerated Voluntarily stopping eating and drinking Termination of life or assisted suicide Physician-assisted suicide Voluntary active euthanasia [Non-voluntary euthanasia] Griffith, 2008 BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  12. Different end-of-life options General category Specific category Normal medical practice Refusal of treatment Withholding/withdrawal futile life-sustaining treatment Pain relief with potential life-shortening effect Palliative/terminal sedation Voluntarily stopping eating and drinking Physician-assisted suicide Tolerated Termination of life or assisted suicide EAS Voluntary active euthanasia [Non-voluntary euthanasia] Griffith, 2008 BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  13. Euthanasia in 96% of Dutch EAS cases RTE,2018 BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  14. Overview for today Part 1: Introduction Part 1: Introduction Different end-of-life options EAS around the world EAS around the world Part 2: The practice in the Netherlands Part 2: The practice in the Netherlands EAS for psychiatric disorders EAS for dementia Part 3: Implications for the US Part 3: Implications for the US D Debate about EAS in the non-terminally ill Conclusion & future directions BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  15. Historical context in the US Vacco Vacco v Quill (1997 v Quill (1997) US Supreme court ruling 1) drew sharp distinction between withdrawal of life- sustaining treatment and PAS 2) no need for PAS, since there is terminal sedation 3) no constitutional right to PAS, hence no constitutional protection Leaving it up to the states to regulate Oregon first US state to legalize PAS in 1997 BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  16. United States: 9 states + DC 1997 Oregon (Death with Dignity Act) 2009 Montana (PAD lawful by State Supreme Court ruling) 2009 Washington (Washington Death with Dignity Act) 2013 Vermont (Vermont Patient choice and Control at End-of-Life Act) 2016 California (End-of-Life Option Act) 2016 Colorado (Colorado End of Life Options act) 2016 D.C. (Death with Dignity Act) 2018 Hawaii (Our Care, Our Choice Act) 2019 New Jersey (Medical Aid-in-Dying for the Terminally Ill Act) 2020 Maine (Maine Death with Dignity Act) BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  17. United States: 9 states + DC Legal criteria For terminal illness terminal illness only: 6 months of expected life or less End of life boundary Medical boundary No requirement of assessment of suffering Medically assisted assisted death: prescription for medication Similar in past proposed UK bills BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  18. 0.46% of all deaths in Oregon 90% in hospice Most 65 years or older (79.2%), and most had cancer (62.5%) 97% white, 1.2% Asian 55% with post-high school degree BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  19. Top 3 reasons for request in Oregon (As reported by doctors; DWDA report 2018) 1) Loss of autonomy (91.7%) 2) Decreasing ability to participate in activities that made life enjoyable (90.5%) 3) Loss of dignity (66.7%) Stable over the years, across jurisdictions also. BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  20. California End of Life Option Act 2017 data, N=374 deaths 90+% over 60 y old Race and ethnicity: 89% white 5.1% Asian 3.9% Hispanic 0% Black 49% with some post high school degree [cf 39% of population] [cf 13%] [cf 39%] [cf 6%] BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  21. Different rationales for PAD/EAS As an end of life issue As an issue of relief of suffering As a matter of right to self-determination BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  22. Why is it important to know about the different rationales? To understand the different laws across jurisdictions why different jurisdictions allow PAD/EAS in different populations the current debates in Europe and Canada the impact these debates may have for the US BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  23. Legalization of PAD/EAS Countries outside the US 2017 Australia (Victoria) 2019 Western Australia 2015 Columbia 1942 Switzerland 2002 The Netherlands Belgium 2016 Canada // 2018 Hawaii 2020 Maine 2016 California Colorado D.C 2013 Vermont 2009 Montana Washington 1997 Oregon 2019 New Jersey United States BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  24. Countries outside the US Columbia Canada Australia Switzerland The Netherlands & Belgium BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  25. Columbia (2015) In response to 2 court rulings in 2015 Euthanasia only Terminal illness Terminal illness required Prospective permission required from review board BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  26. Canada (2016) Voluntary request without external pressure Grievous and irremediable Grievous and irremediable medical condition a. having a serious and incurable illness, disease or disability; and, b. being in an advanced state of irreversible decline in capability; and, c. experiencing enduring physical or psychological suffering person and cannot be relieved cannot be relieved in a manner that they consider acceptable d. where the person s natural death has become reasonably foreseeable natural death has become reasonably foreseeable suffering [ ] that is intolerable they consider acceptable; and, intolerable to the BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  27. Victoria, Australia (2017) Law allows both PAS and euthanasia Terminal illness Terminal illness (6months) with exception of neurodegenerative disorder (12mo prognosis) Suffering Suffering that cannot be relieved cannot be relieved in a manner tolerable to person tolerable BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  28. Switzerland (1942) Assisted suicide decriminalized in Penal Code Requirements Person has a consistent wish to die Person has decisional capacity Assistance is not selfishly motivated not selfishly motivated No unbearable suffering unbearable suffering requirement BUT Guidelines specify there should be unbearable suffering BUT in practice yes BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  29. The Netherlands & Belgium (2002) Both countries have very similar key legal criteria - Voluntary, well-considered request - Unbearable suffering Unbearable suffering - Medically futile Medically futile/no reasonable alternative Suffering Suffering- -based based jurisdictions BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  30. Eligibility Criteria for EAS: Variability Across Jurisdictions Country/Jurisdiction Country/Jurisdiction Proximity to Death required Proximity to Death required Unbearable suffering without hope Unbearable suffering without hope Psychiatric Psychiatric EAS? EAS? No of improvement of improvement none United States (9 states+DC) Terminal illness Colombia Australia (Victoria 2019) Quebec Canada Terminal illness Terminal illness End of life* Reasonably foreseeable natural death none none none none No No No* (No) Unrelievable suffering Unbearable, irremediable suffering Unbearable, irremediable suffering Benelux countries Benelux countries Switzerland Unbearable/hopeless suffering Unbearable/hopeless suffering [in practice guideline of organizations] ? Yes Yes Yes Germany none (Yes) *Deemed unconstitutional by Quebec Superior Court in September, 2019 BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  31. The Netherlands & Belgium EAS are similar But have different legal history and justification Dutch EAS law derived from case law over 25y Along with professional organizations, advisory bodies Belgian EAS law consequence of a political process Was primarily intended to modify physicians behavior BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  32. The Netherlands & Belgium (2002) Both make no distinction between type of medical condition Hence, allow for EAS for nonterminal illness, e.g. EAS on the sole basis of a psychiatric disorder sole basis of a psychiatric disorder (psychiatric euthanasia) EAS on the sole sole basis of dementia basis of dementia But these two applications remain controversial controversial BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  33. 2019-2020: First legal prosecutions First prosecutions since law was enacted in 2002 relate to psychiatric and dementia EAS psychiatric and dementia EAS Netherlands: advance directive case (dementia EAS) 85y old woman: current Dutch criminal court trial (August, 2019) Belgium: 2 psychiatric EAS cases G. De Troyer (64) currently investigated by European Court for Human Rights Tine Nys (38): currently investigated by Belgian criminal court (2020) BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  34. Godelieve De Troyer (64) BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  35. Tine Nys (38) BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  36. Overview for today Part 1: Introduction Part 1: Introduction Different end-of-life options EAS around the world Part 2: The practice in the Netherlands Part 2: The practice in the Netherlands EAS for psychiatric disorders EAS for dementia Part 3: Implications for the US Part 3: Implications for the US Debate about EAS in the non-terminally ill Conclusion & future directions BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  37. A closer lookEAS in the Netherlands Why focus on the Netherlands? Long history history: prior to the EAS law in 2002, the practice was decriminalized in 1987 Law based on relevant series of cases More transparent transparent oversight system which allow for empirical research series of cases BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  38. Legal criteria under the Dutch EAS Law of 2002 Voluntary and well-considered request Unbearable suffering with no prospect of improvement Informing the patient about prospects No reasonable alternative Physician consulted at least one independent physician Physician provided assistance with due medical care BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  39. Legal precedents in the Netherlands 1984 1984 Schoonheim Schoonheim case ruling Principle of necessity can justify physician-assisted suicide case ruling 1994 Chabot case ruling 1994 Chabot case ruling The source of patient suffering is not relevant Psychiatric patients can make a competent request Case lead to EAS on the sole basis of a psychiatric disorder to become effectively legal in 1997 BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  40. Legal precedents in the Netherlands 2002 2002 Brongersma Brongersma case ruling Principle of necessity does not apply to tired of life case Suffering must be based on a medical condition case ruling BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  41. EAS for non-terminal disorders Lots of debate.. but little empirical evidence EAS for psychiatric disorders ( psychiatric EAS ) EAS for dementia Specific challenges in relation to eligibility criteria Interpreting irremediability Interpreting unbearable suffering BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  42. Documentary 24 & ready to die | The Economist (2015) https://www.youtube.com/watch?v=SWWkUzkfJ4M BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  43. Psychiatric EAS: Overview General background General background Patient characteristics Main issues in psychiatric EAS evaluations The challenge of personality disorders BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  44. About 1% of all EAS cases in the NL Note: About 2.4% in Belgium (2018) RTE, 2018 BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  45. 2012 Dutch End of life Clinic Psychiatric EAS timeline 2018 Council of Canadian Academies Report 2002 2016 Canada legalized MAID# Dutch and Belgian EAS Laws 2010 First cases published by RTE* 1994 Chabot case 2015-2016 First empirical papers Belgium& the Netherlands * RTE: Dutch Euthanasia Review Committees # Medical Assistance in Dying BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  46. Some background on the Dutch system Regional Euthanasia Review Committees Founded in 1999 All cases must be reported reported to the RTE Publish a selection of cases selection of cases on website since 2010 5 RTEs with the goal of providing uniform guidance Cases important for the development of standards and provide transparency and auditability Published a first Code of Practice Code of Practice in 2015 Review Committees (RTE) BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  47. Some background on the Dutch system End of Life Clinic End of Life Clinic Organization founded in 2012 Provides EAS evaluation for persons whose physician refuses to perform EAS Most patients who receive EAS at the End of Life clinic are non-terminally ill Sept 2019 renamed ExpertiseCenter Euthanasia BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  48. Estimated numbers of Dutch psychiatric EAS cases 1995 1995 2008 2008 2016 2016 Psychiatric EAS requests requests 320 500 1100 Psychiatric EAS performed performed 2-5 30 60 About 50% of psychiatrists ever received explicit requests. Majority (60-75%) of psychiatric EAS cases are performed at the End of Life Clinic End of Life Clinic (Onwuteaka et al 2017; RTE, 2016) BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  49. Annual Reported Dutch EAS cases 2016-2018 Medical Condition Medical Condition 2016 cases 2016 cases (N=6091) (N=6091) 4137 465 411 2017 cases 2017 cases (N=6585) (N=6585) 4236 782 374 2018 cases 2018 cases (N= 6126) (N= 6126) 4013 738 382 Cancer Combination of disorders Disorders of the nervous system Other disorders Multiple geriatric diseases CV Lung Dementia Psychiatric Psychiatric 104 244 147 293 155 205 315 214 141 275 226 169 231 189 146 60 (1.0%) 60 (1.0%) 83 (1.3%) 83 (1.3%) 67 (1.1%) 67 (1.1%) NB: Occasional cases until 2010, with steady rise since 2011. NB: Occasional cases until 2010, with steady rise since 2011. RTE, 2018 BIOETHICS AT THE NIH BIOETHICS AT THE NIH

  50. Reported Psychiatric EAS cases in Belgium 2014-2018 2014 2014 2015 45 2015 43 2016 2016 27 2017 2017 26 2018 57 Number of Psychiatric EAS Total Number of EAS 1928 2022 2028 2309 2357 % of total 2.3% 2.1% 1.3% 1.1% 2.4% 2.4% FCEC, Belgium BIOETHICS AT THE NIH BIOETHICS AT THE NIH

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