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RESEARCH ARTICLE
An International Consensus Definition of the
Wish to Hasten Death and Its Related
Factors
Albert Balaguer
1☯
*, Cristina Monforte-Royo
2☯
, Josep Porta-Sales
1,3
, Alberto Alonso-
Babarro
4
, Rogelio Altisent
5
, Amor Aradilla-Herrero
6
, Mercedes Bellido-Pérez
2
,
William Breitbart
7
, Carlos Centeno
8
, Miguel Angel Cuervo
9
, Luc Deliens
10
, Gerrit Frerich
11
,
Chris Gastmans
12
, Stephanie Lichtenfeld
13
, Joaquín T Limonero
14
, Markus A Maier
13
, Lars
Johan Materstvedt
15
, María Nabal
16
, Gary Rodin
17
, Barry Rosenfeld
18
, Tracy Schroepfer
19
,
Joaquín Tomás-Sábado
6
, Jordi Trelis
3
, Christian Villavicencio-Chávez
1,3
,
Raymond Voltz
11
1 School of Medicine and Health Sciences, Universitat Internacional de Catalunya, Barcelona, Spain,
2 Nursing Department, School of Medicine and Health Sciences, Universitat Internacional de Catalunya,
Barcelona, Spain, 3 Palliative Care Service, Institut Català d’Oncologia, Bellvitge Biomedical Research
Institute (IDIBELL), Barcelona, Spain, 4 Unidad de Cuidados Paliativos, Hospital Universitario La Paz,
Madrid, Spain, 5 Institute of Health Research Aragon, Cátedra de Profesionalismo y Ética Clínica,
Universidad de Zaragoza, Zaragoza, Spain, 6 Escola Universitària d’Infermeria Gimbernat, Autonomous
University of Barcelona, Barcelona, Spain, 7 Memorial Sloan-Kettering Cancer Center, New York, NY,
United States of America, 8 ATLANTES Research Program, Institute for Culture and Society and Palliative
Medicine Department, Clinica Universidad de Navarra, University of Navarra, Navarra, Spain, 9 Complejo
Hospitalario Infanta Cristina, Badajoz, Spain, 10 End-of-Life Care Research Group, Ghent University & Vrije
Universiteit Brussel, Brussels, Belgium, 11 Department of Palliative Medicine, University Hospital of
Cologne, Cologne, Germany, 12 Catholic University of Leuven, Leuven, Belgium, 13 Ludwig-Maximilians-
Universität München, Munich, Germany, 14 Faculty of Psychology, Stress and Research Group, Universitat
Autònoma de Barcelona, Bellaterra, Barcelona, Spain, 15 Department of Philosophy and Religious Studies,
Faculty of Humanities, Norwegian University of Science and Technology (NTNU), Trondheim, Norway,
16 Palliative Care Supportive Team, Hospital Universitario Arnau de Vilanova, Lleida, Institut Català de la
Salut, IRB, Lleida, Spain, 17 Department of Supportive Care, Princess Margaret Cancer Centre, Department
of Psychiatry and Global Institute Psychosocial, Palliative and End-Life Care (GIPPEC), University of
Toronto, Ontario, Canada, 18 Department of Psychology, Fordham University, Bronx, New York, United
States of America, 19 School of Social Work, University of Wisconsin-Madison, Wisconsin, United States of
America
☯ These authors contributed equally to this work.
* abalaguer@uic.es
Abstract
Background
The desire for hastened death or wish to hasten death (WTHD) that is experienced by some
patients with advanced illness is a complex phenomenon for which no widely accepted defi-
nition exists. This lack of a common conceptualization hinders understanding and coopera-
tion between clinicians and researchers. The aim of this study was to develop an
internationally agreed definition of the WTHD.
Methods
Following an exhaustive literature review, a modified nominal group process and an interna-
tional, modified Delphi process were carried out. The nominal group served to produce a
PLOS ONE | DOI:10.1371/journal.pone.0146184 January 4, 2016 1/14
OPEN ACCESS
Citation: Balaguer A, Monforte-Royo C, Porta-Sales
J, Alonso-Babarro A, Altisent R, Aradilla-Herrero A, et
al. (2016) An International Consensus Definition of
the Wish to Hasten Death and Its Related Factors.
PLoS ONE 11(1): e0146184. doi:10.1371/journal.
pone.0146184
Editor: Antony Bayer, Cardiff University, UNITED
KINGDOM
Received: August 16, 2015
Accepted: December 14, 2015
Published: January 4, 2016
Copyright: © 2016 Balaguer et al. This is an open
access article distributed under the terms of the
Creative Commons Attribution License, which permits
unrestricted use, distribution, and reproduction in any
medium, provided the original author and source are
credited.
Data Availability Statement: All relevant data are
within the paper.
Funding: This work was supported by the Instituto
de Salud Carlos III (grant number: PI14/00263): Main
researcher Albert Balaguer; Other researchers:
Cristina Monforte-Royo, Joaquín Tomás-Sábado,
Christian Villavicencio-Chávez, Mercedes Bellido-
Pérez; aecc-Catalunya contra el Càncer of Barcelona
(Investigació 2014): Main researcher: Albert
Balaguer; Other researchers: Cristina Monforte-Royo,
Josep Porta-Sales, Joaquín Tomás-Sábado,
Christian Villavicencio-Chávez, Mercedes Bellido-
preliminary definition that was then subjected to a Delphi process in which 24 experts from
19 institutions from Europe, Canada and the USA participated. Delphi responses and com-
ments were analysed using a pre-established strategy.
Findings
All 24 experts completed the three rounds of the Delphi process, and all the proposed state-
ments achieved at least 79% agreement. Key concepts in the final definition include the
WTHD as a reaction to suffering, the fact that such a wish is not always expressed sponta-
neously, and the need to distinguish the WTHD from the acceptance of impending death or
from a wish to die naturally, although preferably soon. The proposed definition also makes
reference to possible factors related to the WTHD.
Conclusions
This international consensus definition of the WTHD should make it easier for clinicians and
researchers to share their knowledge. This would foster an improved understanding of the
phenomenon and help in developing strategies for early therapeutic intervention.
Introduction
Over the last two decades the phenomenon of the desire for hastened death has attracted grow-
ing interest in the health literature. However, conceptualizing this desire or wish to hasten
death (WTHD) and establishing its scope is difficult due to a lack of clarity regarding both clin-
ical and terminological aspects [1–4]. In fact, there has yet to be a formal attempt to define the
concept, and most clinical studies on this issue do not clearly describe the target phenomenon
or the conceptual framework being applied [1, 2]. Overall, the lack of precision and consistency
in the terminology used makes it difficult to interpret and draw conclusions from research in
this field [5].
In the palliative care (PC) literature, terms such as ‘wish’ or ‘desire’‘to die’ or to ‘hasten
death’ or other related expressions are used interchangeably [6–11], which is understandable
given that their meanings in everyday speech are largely indistinguishable [3]. However, refer-
ence is sometimes made to someone ‘considering’, ‘intending’ or ‘deciding’ to die or hasten
death without any consideration of the possible nuances involved, that is, of the difference
between thoughts of dying in the context of suffering and a genuine wish to die or to hasten
death [3]. To complicate matters further, researchers sometimes refer to a ‘request’ to die or to
hasten death, or resort to terms that have a more specific meaning in this context, such as assis-
ted suicide or euthanasia
3
, despite there being important differences in what these situations
imply at the clinical, ethical, legal and social levels. It should also be noted that the literature
often fails to make the necessary distinction between the kinds of situations referred to by the
aforementioned terms and a scenario in which a person simply expresses an acceptance of
death or, as a result of his or her spiritual or religious beliefs, calmly contemplates a better life
ahead [2, 5].
In addition to these terminological issues, the subjective nature of the WTHD and the cir-
cumstances surrounding it may not only have different meanings for different patients but also
meanings that change over time for a given individ ual [12]. Indeed, any one patient may expe-
rience numerous, partial or even, at times, contradictory wishes [ 13–15]. Although important
An International Consensus Definition of the Wish to Hasten Death
PLOS ONE | DOI:10.1371/journal.pone.0146184 January 4, 2016 2/14
Pérez, Amor Aradilla-Herrero; WeCare Chair: End-of-
life care at the Universitat Internacional de Catalunya
and ALTIMA: Main researchers: Cristina Monforte-
Royo; Josep Porta-Sales; Albert Balaguer. The
funders had no role in study design, data collection
and analysis, decision to publish, or preparation of
the manuscript.
Competing Interests: The authors have declared
that no competing interests exist.
conceptual advances have been made in recent years [2, 12, 16–19], the complexity of the issue
and the ambiguity affecting the terminology used have posed a problem not only for clinical
studies of the prevalence or aetiology of the phenomenon, but also for research into its ethical,
legal and social aspects. In an attempt to improve understanding of the WTHD, an interna-
tional workshop involving experts from 15 European institutions was held in Barcelona in
November 2013. In line with a point made by a number of authors [2, 3, 20], this workshop rat-
ified the need for greater conceptual precision regarding the WTHD, and work began on devel-
oping an operational definition that would allow better communication both within and
between multidisciplinary groups of researchers and clinicians.
The ultimate aim of this work is to facilitate research in this area and to use the knowledge
gained to improve the care offered to patients in such circumstances. In this context, the pres-
ent paper describes the process towards an internationally agreed operational definition of the
WTHD, one that could help to overcome some of the limitations described above.
Material and Methods
The process involved three phases: 1) review of the literature and discussion within the Steering
Group (SG), comprising three researchers [AB, CMR and JPS], who coordinated the whole
process, 2) a modified nominal group process with European experts, and 3) a modified Delphi
process involving participants from around the world. The modified Delphi process was simi-
lar to the full Delphi in terms of procedure and intent, the main difference being that we started
from a set of selected statements that had been drafted on the basis of a literature review and
the results obtained in the nominal group process. This study was approved by the ethics com-
mittee of Universitat Internacional de Catalunya.
Literature Review
The SG began by carrying out an exhaustive review of the literature in order to establish key
aspects related to the study phenomenon [1–4]. The search strategy used in PubMed included
the following keywords: “wish to die”, “wish to hasten death”, “desire to die”, “desire for death”
and “desire for early death”.
The extensive literature review covered a range of research perspectives on the WTHD,
including primary qualitative studies that analysed the phenomenon from the patient’s point
of view, [14, 16, 19, 21–25], mixed me thods research [7], studies that explored the views of
health professionals [26–28] and the analysis of systematic reviews of the topic [3, 4, 19]. This
enabled us to establish an initial conceptual framework that served as a starting point for the
following two stages of the research. The literature consistently indicated that in the context of
advanced physical disease, the desire to die has a multifactorial origin and that it is principally
determined by psychological, social, spiritual and existential factors [9, 10, 29–34].
Modified Nominal Group Process
International participants with research and clinical profiles were selected from various Euro-
pean countries and disciplines to ensure heterogeneity. The nominal group (NG) was then con-
ducted in Barcelona in November 2013 according to a predetermined schedule involving four
stages [35]. (See Table 1).
Modified Delphi Process
This technique is based on sequential questionnaires that are completed individually and anon-
ymously by a panel of experts with the aim of reaching a consensus. The key strengths of this
An International Consensus Definition of the Wish to Hasten Death
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approach are the anonymity of participants, structuring of the information flow and provision
of regular feedback coordinated by the SG [36, 37]. Using the preliminary results obtained in
the literature review and NG processes, we employed a Delphi process involving three rounds.
Participants in the Delphi proc ess were selected by means of intentional sampling. Specifi-
cally, we drew up a list of potential participants with reputable experience in the area of study
and fulfilled at least one of the following criteria: health professiona ls with clinical experience
in the field of PC, or researchers with knowledge and/or experience related to the WTHD. In
order to achieve a high-quality Delphi process, a heterogeneous group of experts was recruited
specifically, we selected participants from across various geographical regions (Australia, Bel-
gium, Canada, Germany, The Netherlands, Norway, Spain and the USA,) and from different
professional fields (Table 2). Potential participants were contacted by email and informed
about the aims of the study, the tasks involved and the estimated necessary time commitment
they would need to make.
Questionnaire Development and Delphi Process
Based on the literature review, the workshop contributions and the views of the SG, a prelimi-
nary set of key concepts to be included in a definition of the WTHD was drawn up. In order to
facilitate discussion of these ideas, a questionnaire was developed that would enable partici-
pants to give their opinion about each of the concepts included in the proposed definition and,
in particular, the wording of the definition as a whole. To this end, the questionnaire estab-
lished a preliminary definition of the WTHD, as well as a breakdown of each of the statements
or concepts included in it. The task for each participant was to rate their agreement with each
proposed statement on a five-point scale (from 5 = strongly agree to 1 = strongly disagree).
Space was also provided for participants to make comments and/or suggest an alternative
Table 1. Nominal group methodology.
Predetermined schedule of the Nominal Group conducted.
Nominal Group Stages Explanation of each stage
Stage
1
Generation of ideas The objectives of the session were set out
A summary was offered of current knowledge about the WTHD
Questions were posed to generate ideas and debate
Stage
2
Discussion Aims:
Clarify ideas generated in stage 1
Explore opinions
Add further proposals
Care was taken to ensure that each participant felt that his or her
contributions were valued
For the purposes of future study and discussion by the SG, the content of
this session was written up
Stage
3
Summary and
conclusions
Participants were asked to consider any additional ideas that arose after
hearing the views of others
In order to generate new ideas, all the participants’ contributions were
discussed
Stage
4
Individual
prioritization
All the participants were asked to prioritize in writing the main
conclusions resulting from the process so far
Those participants who wished to present their prioritized conclusions to
the group as a whole were given the opportunity to do so
doi:10.1371/journal.pone.0146184.t001
An International Consensus Definition of the Wish to Hasten Death
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wording for each proposed statement or concept. Likewise, they could suggest an alternative
complete definition and/or make general comments.
This preliminary questionnaire was piloted by sending it to two experts in the field. The
questionnaire was sent by email to the panellists chosen for the first round of the Delphi pro-
cess. The SG had previously established that this process would include two or three rounds,
and that for a statement to be accepted, a minimum of 70% agreement would need to be
reached among the panellists. The results from this first round were collected by the SG and a
revised version of the definition was drawn up based on the responses received. Using the same
questionnaire, this revised version was then sent to the panellists for further rating. To facilitate
this task, the results from the first round (comments, individual ratings, and percentage agree-
ment reached) were anonymized and shared with participants via a secure cloud-based system.
This same procedure of feeding back the results prior to further rating was followed between
rounds two and three. Fig 1 shows the process followed in reaching a consensus.
Statistical Analysis
Data were analysed by two members of the research team (AB, CMR). Questionnaire responses
were entered into Microsoft Excel spreadsheets, and the weighted targeted agreement for each
statement was calculated using the algorithm proposed by Tastle and Wierman [38].
Results
Nominal Group (NG)
Seventeen professionals from 15 European institutions in Belgium, Germany, The Netherlands,
Norway and Spain participated. The group debate enabled those involved to share knowledge,
to develop a greater understanding of the phenomenon and to reach a number of key agree-
ments. During the NG process, participants acknowledged that there is a lack of conceptual
precision regarding the wish to die [1–3, 5], and they agreed that this underlined the need to
develop an operational definition that would allow better communication both within and
between groups of researchers and clinicians. A number of other shared conclusions were
reached by participants during the debate (Table 3).
The group also agreed that further work of the kind they had been engaged in would be nec-
essary, and that the inclusion of new participants from different cultures and professional back-
grounds would extend the scope of the study. In this context it was decided that an internet-
based Delphi process would be an ideal way of reaching a definition that fulfilled each of these
characteristics.
Table 2. Key characteristics of experts participating in all three rounds of the Delphi process.
Round Gender Professional background (all of them researchers in
palliative care)
Countries
represented
Total Number of institutions
involved
1, 2 and
3
5
female
Ethicist: 2 Belgium 19
19 male Nurse: 2 Canada
Philosopher: 1 Germany
Psychologist: 5 Netherlands
Psychiatrist: 2 Norway
Palliative care physician: 9 Spain
Social worker: 1 USA
Sociologists: 2
doi:10.1371/journal.pone.0146184.t002
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Modified Delphi Process
Of the 29 experts who were initially contacted, 24 agreed to participate; of these, 15 had previ-
ously taken part in the NG. All 24 experts completed the three rounds of the Delphi process.
Table 2 shows the key participant characteristics of experts in all three rounds of the Delphi
process.
Fig 1. Flowchart of the Delphi process.
doi:10.1371/journal.pone.0146184.g001
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Table 4 shows the percentage agreement reached for each concept/statement after each
round, as well as the proposed changes based on the panellists’ comments.
First round. At the end of this round, the overall agreement reached was 80.7%. None of
the individual concepts/statements yielded agreement below the 70% cut-off established by the
Table 3. Conclusions reached during the Nominal Group.
1. A useful definition would be acceptable to a heterogeneous group of professionals, from different
disciplines and countries
2. The definition should be reserved for patients with a predominantly physical illness or condition
3. The wish to die being referred to should be linked to suffering. Said suffering could have several
different dimensions
4. The definition might be applicable to a wide range of patients but its scope should be clearly set out so
as highlight those situations in which it would not apply, for example, an ‘acceptance of death’.
doi:10.1371/journal.pone.0146184.t003
Table 4. The 12 statements included in the proposed definition of the WTHD, the percentage agreement for each, and the changes to their wording
across the three rounds of the Delphi process.
Statements First Round Delphi
Questionnaire
Agreement on
Round 1
Wording
Statements Second Round
Delphi Questionnaire
Agreement on
Round 2
Wording
Statements Third Round Delphi
Questionnaire
Title: Definition of the WTHD Title: Definition of the WTHD plus
addendum
Title: Definition of the WTHD and
its related factors
1 WTHD is a reaction to global
suffering
76.4% 1 The WTHD is a reaction to
suffering,
92.3% 1 The WTHD is a reaction to
suffering,
2 in the context of a severe
illness
74.3% 2 in the context of a life-
threatening condition,
82.5% 2 in the context of a life-
threatening condition,
3 from which the patient can see
no way out other than to
accelerate his or her death.
84.2% 3 from which the patient can see
no way out other than to
accelerate his or her death.
79.7% 3 from which the patient can see
no way out other than to
accelerate his or her death.
4 This complex feeling, 78.1% 4 This wish 96.6% 4 This wish
5 may be expressed
spontaneously or after
being asked about it,
91.4% 5 may be expressed
spontaneously or after
being asked about it,
95.7% 5 may be expressed
spontaneously or after
being asked about it,
6 but it must be distinguished
from the peaceful
acceptance of impending
death
87.4% 6 but it must be distinguished
from the acceptance of
impending death
92.9% 6 but it must be distinguished
from the acceptance of
impending death
7 or from a vague wish to die
naturally, although
preferably soon
77.6% 7 or from a wish to die naturally,
although preferably soon.
93.3% 7 or from a wish to die naturally,
although preferably soon.
8 The WTHD is related to a
combination of several
factors
77.6% 8 ADDENDUM: The WTHD may
arise in response to one or
several factors,
90.2% 8 The WTHD may arise in
response to one or more
factors,
9 including unrelieved/
exacerbation of physical
symptoms (e.g., pain,
dyspnoea),
77.5% 9 including physical symptoms
(either present or foreseen),
85,7% 9 including physical symptoms
(either present or foreseen),
10 unrelieved mental/
psychological disorder (e.g.,
depression, hopelessness)
81.4% 10 psychological distress (e.g.
depression, hopelessness,
fears, etc.),
93.0% 10 psychological distress (e.g.
depression, hopelessness,
fears, etc.),
11 existential distress (e.g., loss
of meaning in life),
86.6% 11 existential suffering (e.g. loss
of meaning in life),
94.0% 11 existential suffering (e.g. loss
of meaning in life),
12 and fears. 75.8% 12 and social aspects (e.g. feeling
that one is a burden).
93.2% 12 or social aspects (e.g. feeling
that one is a burden).
doi:10.1371/journal.pone.0146184.t004
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SG; therefore, it was decided that all 12 statements would be included in the following rounds.
The specific analysis of each concept, however, led to a number of changes to the wording of
statements 1, 2, 4, 6 and 7 (Table 4). The decision to make these changes was based on the per-
centage agreement reached, and on the experts’ comments regarding more qualitative aspects.
In this round, four of the panellists argued that the definition did not need to mention the
factors related to the emergence of the WTHD (concepts 8 to 12). Upon reflection, however,
the SG decided to maintain the reference to these factors but in a separate paragraph headed
‘Addendum’ (see Discussion). In addition, the views of these panellists were made clear in the
feedback in order to gather the opinions of all participants in the next round.
Second round. By the end of this round, the overall agreement had reached 90.8%. Agree-
ment was above 80% for all the individual concepts, with the exception of statement 3 (“from
which the patient can see no way out other than to accelerate his or her death”); here, two
panellists expressed doubts about whether the word ‘see’ or ‘feel’ should be used, alluding to
the extent to which this aspect of the phenomenon was rational or emotional), which reached
79.7%, still well above the minimum established.
The qualitative analysis of Round 1 led to the SG making two decisions in relation to the fol-
lowing. First, the analysis of the panellists’ comments showed that most were in favour of
maintaining the reference to possible causal or related factors. Consequently, the SG decided
against putting this information in a separate paragraph headed ‘Addendum’. The solution
chosen instead was to change the title of the proposal to ‘Definition and related factors’ and to
include all the information in a single main text, thereby avoiding a partial use of the definition
that would undermine its value. Second, statement 2, “in the context of a life-threatening con-
dition”, generated debate among the panellists, some of whom felt it was too restrictive and
would not be applicable to situations such as a sudden impairment of functioning or to people
who were simply tired of living. Since “life-threatening condition” is the precise term that is
generally used to define patients receiving PC, the consensus of the SG was towards maintain-
ing this expression.
Third round. All the panellists expressed agreement with the final definition, as well as
with the proposed title (Definition of the WTHD and its related factors). Most of the com-
ments in this round, which produced several nuances of opinion, focused on statement 2 (“in
the context of a life-threatening condition”), but it was agreed that its inclusion helped link the
definition more closely to the PC context in its wider sense. A number of other isolated com-
ments were made by some panellists and these are addressed in the Discussion below.
Final Definition of the WTHD and its Related Factors
The WTHD is a reaction to suffering, in the context of a life-threatening condition, from
which the patient can see no way out other than to accelerate his or her death. This wish may
be expressed spontaneously or after being asked about it, but it must be distinguished from the
acceptance of impending death or from a wish to die naturally, although preferably soon.
The WTHD may arise in response to one or more factors, including physical symptoms
(either present or foreseen), psychological distress (e.g. depression, hopelessness, fears, etc.),
existential suffering (e.g. loss of meaning in life), or social aspects (e.g. feeling that one is a
burden).
Discussion
The process of reaching a consensus regarding an operational definition of the wish to hasten
death (or ‘desire for hastened death’, since the terms ‘wish’ and ‘desire’ have been used synony-
mously throughout the study) has been both laborious and revealing. Each word of the
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definition has been conside red at some point or other during the discussions, and this suggests
that professionals in this field regard the creation of a consensus definition as being of impor-
tance. It should be noted that the proposed definition focuses on the ‘desire’ or ‘wish’ to hasten
death, and not on euthanasia, physician-assisted suicide or actions such as the voluntary refusal
of food and fluids. Indeed, our aim was precisely to explore in greater depth the conceptualiza-
tion of this broader issue, that is, the WTHD, which may precede these other more specific
acts. In our view, it is this issue which is of greater interest from a clinical point of view. Thus,
although further efforts are required, we believe that the work described in this paper will help
to refine existing concepts and facilitate greater understanding among and between clinicians
and researchers, thus opening up new and important avenues for future investigation.
Aspects of the consensus definition that should be highlighted
The first point to note is that the WTHD is defined as a reaction to suffering. Although there
was some debate over whether the extent of suffering should be specified, for example, by
including an adjective such as ‘extreme’, ‘overwhelming’ or ‘unbearable’, the final decision was
that this was not required. It was argued that not all cases would necessarily involve suffering
of this kind. Furthermore, confusion could arise from the use of the word ‘ unbearable’, due to
its association with legal initiatives related to assisted suicide or euthanasia. The inclusion of
other adjectives such as ‘global’ or ‘multidimensional’ was also debated, but once again it was
decided that this was unnecessary, since intense suffering inevitably affects all dimensions of
the human individual [39].
A second point is that the definition is circumscribed to people with significant physical ill-
ness or incapacity. Although the purpose of the definition was not to specify differences
between the WTHD and suicidal ideation, which in fact would be difficult to distinguish, it was
agreed that the term WTHD should specifically be used when such a wish is experienced by
sick people with limited life expectancy, or by patients requiring PC in the widest sense. In this
regard, there was also some deliberation over whether the definition should include the expres-
sion ‘life-threatening condition’ or ‘life-limiting condition ’. Initially, the term ‘limiting’ (with
its implicit reference to both time and physical limitations) was felt to be adequate, but it was
eventually decided that ‘life-threatening condition’ was closer to the terminology used in exist-
ing definitions of PC, such as that established by the World Health Organization [40].
Although the consensus view among panellists was that the definition should apply strictly to
the context of significant physical illness or disability, this does not rule out the possibility that
future revisions might see its scope being extended to cover older people who report being
‘tired of living’ in the absence of a life-threatening condition. As is clear, however, from a recent
systematic review [41], only a small number of empirical studies ha ve examined this issue in
older people, and even fewer have analysed the phenomenon in the absence of mental disorder
or a life-threat ening condition .
Another feature that emerged during the process of producing the definition was that the
WTHD might be present even if not explicitly expressed by the patient. The suggestion to
include this aspect was accepted in all three rounds of the Delphi process, and it highlights the
perceived clinical importance of detecting the phenomenon and of asking the patient about it,
even if he or she has not openly expressed such a wish.
The final part of the first paragraph of the proposed definition draws attention to two situa-
tions that would not be regarded as synonymous with a WTHD. The first situation would be
an acceptance of death, in the hope that it would be peaceful and without suffering, or with a
degree of suffering that would be bearable or accept ed. This situation would include those
patients who see death as a natural process in the context of their condition, that is, something
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accepted but not actually desired. The second situation is a wish to die without an accompa-
nying wish to hasten death. Wishes of this kind may be associated with the hope of a better life
after this one (spiritual, religious or philosophical beliefs, etc.), or with ideas of relief or rest,
but without any serious plans to hasten death.
A further point to note is that differentiating between the WTHD and suicidal ideation in
people with evident psychiatric, psychological or emotional problems does not seem possible,
especially given that severe physical illness is known to be a risk factor for suicide attempts
among those with suicidal ideation [17, 42–45]. In this respect, the WTHD would be an over-
arching term that would include suicidal ideation as one type of such a wish or, in the case of
suicide, as an action related to it. Given the complexity of this issue, it is unsurprising that the
distinction between suicidal ideation and the WTHD was a question that generated consider-
able debate among panellists. It is worth noting, however, that it was the experts from the field
of psychiatry who were most against the idea of a clear distinction being drawn between the
two concepts. What is clear is that it is important to rule out depression or another mental dis-
order when seeking to identify the presence of a WTHD [2, 44].
Multifactorial nature of the WTHD
The second paragraph of the proposed definition emphasizes the multifactorial nature of the
phenomenon and draws attention to some of the aspects most commonly observed in conjunc-
tion with the WTHD. The opportunity to include a mention of these ‘related factors’ was
another issue that provoked an interesting debate during the Delphi process. At one point it
was argued that, strictly speaking, this fragment need not form part of the definition. However,
the final decision was to include a reference to related factors as this helps to specify the con-
cept of the WTHD and to remind clinicians about aspects that should be explored in terms of
their possible contribution to such a wish. The aim in mentioning these factors was not to be
exhaustive but simply to draw attention to potentially key aspects underpinning the WTHD.
While some of the factors included in the definition underwent minor changes as a result of
comments made during the three Delphi rounds, the panellists invariably agreed upon the
need to mention ‘existenti al suffering (e.g. loss of meaning in life)’, even though the literature
contains no precise definition of what this means in practice [46, 47].
During the Delphi process there was also discussion over whether this final section should
include mention of possible meanings that the wish to die might have for the patient, for exam-
ple, fear (of symptoms getting worse or of the process of dying), a cry for help or the desire to
gain some control over life [4, 12, 15, 34]. However, it was ultimately decided that the definition
would be more concise.
The possibility of including the content of the second paragraph as an Addendum rather
than as a main part of th e definition was also considered. The conclusion, however, was that it
would be better to retain this content as part of the overall statement and change the title of the
latter accordingly, that is, to ‘Definition of the Wish to Hasten Death and its Related Factors’.
By including both paragraphs within a single text, there was no risk that the definition might
be undermined as a result of only a part of it being taken into consideration. This decision was
viewed particularly positively by panellists with a more clinical professional role.
Mention should also be made of certain aspects or finer details that, despite the overall con-
sensus reached, proved to be somewhat controversial and saw different views being expressed.
For example, in relation to the concept/statement “from which the patient can see no way out
other than to accelerate his or her death”, some panellists were reluctant to use the expression
“can see”, which they felt could be interpreted as the outcome of a rational process (i.e. after
the analysis of all options) rather than as a more emotional impulse, one linked to feelings.
An International Consensus Definition of the Wish to Hasten Death
PLOS ONE | DOI:10.1371/journal.pone.0146184 January 4, 2016 10 / 14
Although the possibility of using the expression “can feel” was considered, it was finally
decided that the most practical solution was to retain the original wording (“can see”), since
the general view was that, in reality, both feeling and reason can be implicated in such a wish.
Different opinions were also expressed regarding whether the definition should reference
the potentially fluctuating or ambivalent nature of the WTHD, although ultimat ely it was
decided not to mention these nuances in the definition.
In our view, the present study has a number of strengths. The process followed is an appro-
priate way of reaching agreement over a definition of the WTHD that could be widely accepted.
Indeed, the methodology used (NG and Delphi process, preceded by an exhaustive literature
review) has been applied in similar studies conducted in various disciplines [48–52], and has
contributed to the development of common frameworks and working standards that are cru-
cial for advances in biomedical science. The process here involved experts from different coun-
tries and various professional disciplin es who had a range of experience in relation to the topic
in question. Some had a more clinical background, while others were more research-based.
This variety offers the possibility of combining different views regarding the phenomenon.
We also acknowledge that the study had limitations. The study is perhaps limited by the rel-
atively small number of participants (n = 24) in the Delphi process, many of whom had already
taken part in the NG. A further limitation relates to the lack of participating experts from Asia,
Africa or the Middle East, given that there may be cultural differences in attitudes towards has-
tened death. Although the debate would clearly have been enriche d by the participation of a
larger number of experts, who may have brought other opinions or discrepant views that are
not represented here, we nonetheless believe that the most significant opinions are likely to
have been covered, making the exercise both participatory and operative.
Implications for practice and for research
It should be emphasized that the proposed definition is primarily aimed at—and developed
from within—the PC context. PC is understood here in the broad sense, as a multidimensional
health intervention that many patients, especially those with chronic illness or degenerative
disease, may require at some point in their lives [40]. In this context, a better understanding of
the WTHD and a common language for describing it may improve communication both
among professionals and between patients and professionals when seeking to address the phe-
nomenon. Distinguishing and defining the WTHD more clearly will also help in terms of its
early detection, and should highlight for all those involved in the care of these patients the
importance of exploring such a wish and identifying both the meaning it has for a given indi-
vidual and th e factors related with it. However, this will also bring a new set of challenges, since
professionals will need to develop the communication skills required to explore and tackle this
issue, and individualized treatment protocols will need to be drawn up to reduce the suffering
of patients. In this respect, the suffering linked to the social, psychological and existential
dimensions (especially the latter) is perhaps the most complex challenge that now needs to be
addressed in this context [53].
With respect to research in this field, a unified definition should facilitate a better conceptu-
alization of the phenomenon and lead to an improve d understanding of it. Greater clarity
about the construct is likely to enable better communication both within and between groups
of researchers. This improved communication should lead to descriptions of study populations
and definitions used in research that are more precise and, therefore, make it easier to compare
and even combine results. The close examination of the WTHD carried out in the present
study highlights the need for further research in order to enable its early detection, to identify
and assess factors associated with it, and to evaluate the response to therapeutic interventions.
An International Consensus Definition of the Wish to Hasten Death
PLOS ONE | DOI:10.1371/journal.pone.0146184 January 4, 2016 11 / 14
Given that conceptual clarity is crucial for ethical and legal research, these fields should also
benefit from the work reported here. Finding ways of easing end-of-life suffering expressed as a
WTHD is a scientific, professional and human duty, and the consensus definition reached
should go some way to achieving this goal.
Acknowledgments
The authors would like to thank Lluís Gonzalez de Paz for his help with the statistical analysis
of the weighted agreement of the rounds in the Delphi process, and Alan Nance for his contri-
bution to transl ating and editing the manuscript.
Author Contributions
Conceived and designed the experiments: AB CMR JPS. Performed the experiments: AB CMR
JPS AA-B RA AA-H MB-P WB CC MAC LD GF CG SL JTL MAM LJM MN GR BR TS ST JT-
S JT CV-C RV. Analyzed the data: AB CMR JPS AA-B RA AA-H MB-P WB CC MAC LD GF
CG SL JTL MAM LJM MN GR BR TS ST JT-S JT CV-C RV. Contributed reagents/materials/
analysis tools: AB CMR JPS AA-B RA AA-H MB-P WB CC MAC LD GF CG SL JTL MAM
LJM MN GR BR TS ST JT-S JT CV-C RV. Wrote the paper: AB CMR JPS AA-B RA AA-H
MB-P WB CC MAC LD GF CG SL JTL MAM LJM MN GR BR TS ST JT-S JT CV-C RV.
References
1. Rosenfeld B. Assisted suicide, depression, and the right to die. Psychol Public Policy Law. 2000;
6:467–488. PMID: 12661536
2. Breitbart W, Rosenfeld B, Pessin H, Kaim M, Funesti-Esch J, Galietta M, et al. Depression, hopeless-
ness, and desire for hastened death in terminally ill patients with cancer. JAMA. 2000; 284:2907–2911.
PMID: 11147988
3. Monforte-Royo C, Villavicencio-Chávez C, Tomás-Sábado J, Balaguer A. The wish to hasten death: A
review of clinical studies. Psychooncology. 2011; 20:795–804. doi: 10.1002/pon.1839 PMID:
20821377
4. Monforte-Royo C, Villavicencio-Chávez C, Tomás-Sábado J, Mahtani-Chugani V, Balaguer A. What
lies behind the wish to hasten death? A Systematic review and meta-ethnography from the perspective
of the patients. PLoS ONE. 2012; 7(5):e37117. doi: 10.1371/journal.pone.0037117 PMID: 22606338
5. Rosenfeld B. Methodological issues in assisted suicide and euthanasia research. Psychol Public Policy
Law. 2000; 6:559–574. PMID: 12661541
6. Chochinov HM, Wilson KG, Enns M, Lander S. Depression, Hopelessness, and suicidal ideation in the
terminally ill. Psychosomatics. 1998; 39:366–370. PMID: 9691706
7. Kelly B, Burnett P, Pelusi D, Badger S, Varghese F, Robertson M. Terminally ill cancer patients' wish to
hasten death. Palliat Med. 2002; 16:339–345 PMID: 12132547
8. Albert SM, Rabkin JG, Del Bene ML, Tider T, O'Sullivan I, Rowland LP, et al. Wish to die in end-stage
ALS. Neurology. 2005; 65:68–74. PMID: 16009887
9. Rodin G, Zimmermann C, Rydall A, Jones J, Shepherd FA, Moore M, et al. The desire for hastened
death in patients with metastatic cancer. J Pain Symptom Manage. 2007; 33:661–675. PMID:
17531909
10. Mystakidou K, Rosenfeld B, Parpa E, Katsouda E, Tsilika E, Galanos A, et al. Desire for death near the
end of life: the role of depression, anxiety and pain. Gen Hosp Psychiatry. 2005; 27:258–262. PMID:
15993258
11. Villavicencio-Chavez C, Monforte-Royo C, Tomas-Sabado J, Porta-Sales J, Maier M, Balaguer A.
Physical and psychological factors and the wish to hasten death in advanced cancer patients. Psy-
chooncology. 2014; 23:1125–1132. doi: 10.1002/pon.3536 PMID: 24706522
12. Ohnsorge K, Gudat H, Rehmann-Sutter C. What a wish to die can mean: reasons, meanings and func-
tions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in pallia-
tive care. BMC Palliat Care. 2014; 13:38. doi: 10.1186/1472-684X-13-38 PMID: 25161387
13. Ohnsorge K, Gudat Keller HR, Widdershoven GA, Rehmann-Sutter C. 'Ambivalence' at the end of life:
how to understand patients' wishes ethically. Nurs Ethics. 2012; 19:629–641. PMID: 22990424
An International Consensus Definition of the Wish to Hasten Death
PLOS ONE | DOI:10.1371/journal.pone.0146184 January 4, 2016 12 / 14
14. Coyle N, Sculco L. Expressed desire for hastened death in seven patients living with advanced cancer:
a phenomenologic inquiry. Oncol Nursing Forum. 2004; 31:699–709.
15. Nissim R, Gagliese L, Rodin G. The desire for hastened death in individuals with advanced cancer: a
longitudinal qualitative study. Soc Sci Med. 2009; 69:165–171. doi: 10.1016/j.socscimed.2009.04.021
PMID: 19482401
16. Schroepfer TA. Mind frames towards dying and factors motivating their adoption by terminally ill elders.
J Gerontol. 2006; 61:S129–39.
17. Brown JH, Henteleff P, Barakat S, Rowe CJ. Is it normal for terminally ill patients to desire death? Am J
Psychiatry. 1986; 143:208–211 PMID: 3946656
18. Chochinov HM, Wilson KG, Enns M, Mowchun N, Lander S, Levitt M, et al. Desire for death in the termi-
nally ill. Am J Psychiatry. 1995; 152:1185–1191. PMID: 7625468
19. Hudson PL, Kristjanson LJ, Ashby M, Kelly B, Schofield P, Hudson A, et al. Desire for hastened death
in patients with advanced disease and the evidence base of clinical guidelines: a systematic review.
Palliat Med. 2006; 20:693–701. PMID: 17060268
20. Rosenfeld B. Assisted Suicide and the Right to Die: The Interface of Social Science, Public Policy, and
Medical Ethics. New York, USA, American Psychological Association, 2004.
21. Lavery JV, Boyle J, Dickens BM, Maclean H, Singer PA. Origins of the desire for euthanasia and assis-
ted suicide in people with HIV-1 or AIDS: a qualitative study. Lancet. 2001; 358:362–367. PMID:
11502315
22. Mak YY, Elwyn G. Voices of the terminally ill: uncovering the meaning of desire for euthanasia. Palliat
Med. 2005; 19:343–350 PMID: 15984507
23. Pearlman RA, Hsu C, Starks H, Back AL, Gordon JR, Bharucha AJ, et al. Motivations for physician-
assisted suicide. J Gen Intern Med. 2005; 20:234–239. PMID: 15836526
24. Rurup ML, Pasman HR, Goedhart J, Deeg DJH, Kerkhof AJFM, Onwuteaka-Philipsen BD. Understand-
ing why older people develop a wish to die: a qualitative interview study. Crisis. 2011; 32:204–216. doi:
10.1027/0227-5910/a000078 PMID: 21940258
25. Malpas PJ, Mitchell K, Johnson MH. "I wouldn't want to become a nuisance under any circum-
stances"—a qualitative study of the reasons some healthy older individuals support medical practices
that hasten death. N Z Med J. 2012; 125:9–19.
26. Raijmakers NJ, van der Heide A, Kouwenhoven PS, van Thiel GJ, van Delden JJ, Rietjens JA. Assis-
tance in dying for older people without a serious medical condition who have a wish to die: a national
cross-sectional survey. J Med Ethics. 2015; 41:145–150. doi: 10.1136/medethics-2012-101304 PMID:
24335917
27. Gastmans C, Van Neste F, Schotsmans P. Facing requests for euthanasia: a clinical practice guideline.
J Med Ethics. 2004; 30:212–217. PMID: 15082821
28. Dierckx de Casterlé B, Verpoort C, De Bal N, Gastmans C. Nurses' views on their involvement in eutha-
nasia: a qualitative study in Flanders (Belgium). J Med Ethics. 2006; 32:187–192. PMID: 16574869
29. Kissane DW, Clarke DM, Street AF. Demoralization syndrome—a relevant psychiatric diagnosis for
palliative care. J Palliat Care. 2001; 17:12–
21. PMID: 11324179
30. Kelly B, Burnett P, Pelusi D, Badger S, Varghese F, Robertson M. Factors associated with the wish to
hasten death: a study of patients with terminal illness. Psychol Med. 2003; 33:75–81. PMID: 12537038
31. McClain-Jacobson C, Rosenfeld B, Kosinski A, Pessin H, Cimino JE, Breitbart W. Belief in an afterlife,
spiritual well-being and end-of-life despair in patients with advanced cancer. Gen Hosp Psychiatry.
2004; 26:484–486. PMID: 15567216
32. Morita T, Sakaguchi Y, Hirai K, Tsuneto S, Shima Y. Desire for death and request to hasten death of
Japanese terminally ill cancer patients receiving specialized inpatient palliative care. J Pain Symptom
Manage. 2004; 27:44–52. PMID: 14711468
33. Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Understanding the will to
live in patients nearing death. Psychosomatics. 2005; 46:7–10. PMID: 15765815
34. Johansen S, Holen JC, Kaasa S, Loge JH, Materstvedt LJ. Attitudes towards, and wishes for, euthana-
sia in advanced cancer patients at a palliative medicine unit. Palliat Med. 2005; 19:454–460. PMID:
16218157
35. Van de Ven AH, Delbecq AL. The nominal group as a research instrument for exploratory health stud-
ies. Am J Public Health. 1972; 62:337–342. PMID: 5011164
36. Williams PL, Webb C. The Delphi technique: a methodological discussion. J Adv Nurs. 1994; 19:180–
186. PMID: 8138622
37. Powell C: The Delphi technique: myths and realities. J Adv Nurs. 2003; 41:376–382 PMID: 12581103
An International Consensus Definition of the Wish to Hasten Death
PLOS ONE | DOI:10.1371/journal.pone.0146184 January 4, 2016 13 / 14
38. Tastle WJ, Wierman MJ. Using Consensus to measure weighted targeted agreement. Proceedings of
the North American Fuzzy Information processing society conference, San Diego, USA, 2007.
39. Cassell EJ. The nature of suffering and the goals of medicine. The New England Journal of Medicine,
1982:639–45. PMID: 7057823
40. World Health Organization. WHO. Available: http://www.who.int/cancer/palliative/definition/en/
41. van Wijngaarden E, Leget C, Goossensen A. Experiences and motivations underlying wishes to die in
older people who are tired of living: a research area in its infancy. Omega (Westport). 2014; 69:191–
216.
42. Mishara BL. Synthesis of research and evidence on factors affecting the desire of terminally ill or seri-
ously chronically ill persons to hasten death. Omega (Wesport). 1999; 39:1–70.
43. Owen C, Tennant C, Levi J, Jones M. Suicide and euthanasia: patient attitudes in the context of cancer.
Psychooncology. 1992; 1:79–88.
44. Harris EC, Barraclough B. Suicide as an outcome for mental disorders. A meta-analysis. Br J Psychia-
try. 1997; 170:205–228. PMID: 9229027
45. Van Loon RA. Desire to die in terminally ill people: a framework for assessment and intervention. Health
Soc Work. 1999; 24:260–268. PMID: 10605631
46. Bruce A, Boston P. Relieving existential suffering through palliative sedation: discussion of an uneasy
practice. J Adv Nurs. 2011; 67:2732–2740. doi: 10.1111/j.1365-2648.2011.05711.x PMID: 21627682
47. Kissane DW. The relief of existential suffering. Arch Intern Med. 2012; 172:1501–1505. doi: 10.1001/
archinternmed.2012.3633 PMID: 22945389
48. Rodríguez-Mañas L, Féart C, Mann G, Viña J, Chatterji S, Chodzko-Zajko W, et al. Searching for an
operational definition of frailty: a Delphi method based consensus statement: the frailty operative defini-
tion-consensus conference project. J Gerontol A Biol Sci Med Sci. 2013; 68:62–67. doi: 10.1093/
gerona/gls119 PMID: 22511289
49. Cresswell KM, Panesar SS, Salvilla SA, Carson-Stevens A, Larizgoitia I, Donaldson LJ, et al. Global
research priorities to better understand the burden of iatrogenic harm in primary care: an international
Delphi exercise. PLoS Med. 2013; 10(11):e1001554. doi: 10.1371/journal.pmed.1001554 PMID:
24260028
50. Simon ST, Weingartner V, Higginson IJ, Voltz R, Bausewein C. Definition, categorization, and terminol-
ogy of episodic breathlessness: consensus by an international Delphi survey. J Pain Symptom Man-
age. 2014; 47:828–838. doi: 10.1016/j.jpainsymman.2013.06.013 PMID: 24095285
51. Sanduleanu S, le Clercq CM, Dekker E, Meijer GA, Rabeneck L, Rutter MD, et al. Definition and taxon-
omy of interval colorectal cancers: a proposal for standardising nomenclature. Gut. 2014; pii: gutjnl-
2014-307992.
52. Gordon M, Baker P, Catchpole K, Darbyshire D, Schocken D. Devising a consensus definition and
framework for non-technical skills in healthcare to support educational design: A modified Delphi study.
Med Teach. 2014; 22:1–6.
53. Viola R: Intractable wish to die: Multiple questions about a challenging issue. J Palliat Care. 2014;
30:294–297. PMID: 25962264
An International Consensus Definition of the Wish to Hasten Death
PLOS ONE | DOI:10.1371/journal.pone.0146184 January 4, 2016 14 / 14
