CONJ • RCSIO Summer/Été 2012 195
by Kim Sadler
All terminally ill individuals should have access to palliative care that
gives equal importance to all aspects of suffering. In spite of all the
efforts made, some of these individuals will, unfortunately, be left
with suffering described as “refractory”. It would appear that pal-
liative sedation then becomes an option. There is much controversy
around this practice, especially when it is used to alleviate suffering
of a more existential nature. This article aims first to define the prac-
tice of palliative sedation, second to explore the concept of existential
suffering in palliative care and third to address the implications for
Ms. B., 29, is living with endometrial cancer. Despite surgery and
the numerous chemotherapy treatments she has received since
diagnosis, medical imaging tests reveal the illness’ continuing
progress. Multiple metastases have spread to the intestinal walls.
Presenting with a complete bowel obstruction, she has been admit-
ted to the palliative care unit. A nasogastric tube attached to suc-
tion is in place to prevent vomiting and has confined her to bed.
The severe pains and nausea that were initially present are now
under control. Her devastated parents remain at her bedside 24/7.
Ms. B. has lost more than 30 pounds in the last month and presents
with generalized weakness. She says she feels like she has become
a burden for her family, she is living a pointless life and, above all,
she is no longer herself. She confides that seeing herself dying has
become intolerable to her. A psychiatrist and a psychologist have
been consulted. Because the clinical presentation does not match
anything mentioned in the Diagnostic and Statistical Manual for
Mental Disorders (DSM-IV-TR), no diagnosis of depression or any
other mental disorder has been established. Her prognosis is esti-
mated to be a few weeks. At Ms. B.’s request, a continuous infusion
of a sedative has been initiated. This infusion will keep her in a
lethargic state until she dies.
Sophie, a nurse, has been finding it difficult to care for Ms. B.
since palliative sedation was induced. She dares not talk about it,
but feels like she is participating in some form of assisted suicide
and wonders if there could not have been some other less extreme
All terminally ill individuals should have access to palliative
care that gives equal importance to the physiological, as well as
psychosocial and spiritual aspects of suffering (Quill & Byock,
2000). In spite of all the efforts made, some individuals are left
struggling with unresolved symptoms at end of life. These symp-
toms are called “refractory” in the palliative care context. These
can be pain, nausea, vomiting, delirium and bleeding, as well as
psychological or existential distress. The main characteristic of a
refractory symptom is that it has become intolerable. In the pal-
liative care context, it seems that when all available interventions
to alleviate a symptom have failed, one last option emerges, that
of palliative sedation. So palliative sedation is seen as a type of
last resort therapy (De Graeff & Dean, 2007; Muller-Bush, Andres,
& Jehser, 2003; Quill & Byock, 2000; Schuman-Olivier, Brendel,
Forstein, & Price, 2008). Several proposed guidelines have been
published in order to make this practice more structured, ethi-
cal, justified and, above all, to differentiate it from assisted sui-
cide and euthanasia. Nevertheless, its use still gives rise to much
controversy. This is mostly due to a lack of clear and universally
accepted definitions of what palliative sedation (Maltoni et al.,
2009; Morita, Tsuneto, & Shima, 2002) and refractory symptoms
really are (Morita, Tsuneto, & Shima, 2002). The boundaries with
the practice of assisted suicide and euthanasia are not clearly
defined for many, especially when the refractory symptom at play
relates to existential suffering.
This article aims first to define the practice of palliative seda-
tion, second to explore the concept of existential suffering in
palliative care and third to address the implications for nursing
In the context of this paper, palliative sedation is defined as
the use of sedative medications to relieve unendurable suffer-
ing from refractory symptoms by a reduction in the level of con-
sciousness (De Graeff & Dean, 2007). It is difficult to estimate the
prevalence of this practice given the inconsistencies in its defini-
tion and disparities in its enumeration (De Graeff & Dean, 2007).
Palliative sedation goes by a number of different names in the lit-
erature, which contributes to maintaining some confusion around
the nature of its practice. The following are but a few examples:
total sedation, sedation for refractory symptoms, continuous deep
sedation, palliative sedation therapy and terminal sedation. Some
categorize it according to its schedule (e.g., intermittent, continu-
ous), the level of sedation (e.g., light, moderate, deep), the type
of medication used (e.g., benzodiazepines, antipsychotics). The
practice that remains the most controversial is the use of contin-
uous deep sedation, which is maintained until the time of death
(Rietjens, Buiting, Pasman, van der Maas, van Delden, & van der
Regarding the “intolerable” nature of a symptom, Cherny (1994)
put forward an interesting description. It is one that cannot be ade-
quately controlled despite aggressive efforts to identify a tolerable
therapy that does not compromise consciousness; moreover, addi-
tional interventions would not provide adequate relief within an
acceptable timeframe in these cases. Despite the operationalization
Palliative sedation to alleviate
existential suffering at end-of-life:
Insight into a controversial practice
About the author
Kim Sadler, BScN, PhD(c) Research/Intervention in Clinical
Psychology. Email: firstname.lastname@example.org
196 CONJ • RCSIO Summer/Été 2012
of the concept, there remains a significant degree of subjectivity.
Only the patients themselves can decide on the intractable charac-
ter of a symptom (Morita, Tsuneto, & Shima, 2002). After all, they
are the ones experiencing their suffering.
Some argue that this type of sedation is a disguised form
of assisted suicide or euthanasia, especially when the refrac-
tory symptom in play relates to existential suffering (Rady &
Verheijde, 2010). Many articles have been written in the last few
years to demonstrate that these practices are separate and par-
ticularly that palliative sedation does not constitute a slippery
slope towards euthanasia. Intent, method used and goal are the
most often quoted criteria to differentiate it from assisted sui-
cide and euthanasia (Muller-Bush, Andres, & Jehser, 2003). In
the context of palliative sedation, the intent is to relieve suffer-
ing, most often through sedative drugs (e.g., benzodiazepines)
and the goal is to provide relief. In the case of euthanasia, the
intent is to cause rapid death through the use of lethal medi-
cation (Muller-Bush, Andres, & Jehser, 2003). Some researchers
claimed that palliative sedation did not hasten the dying process
in terms of survival time for the terminally ill (e.g., the number
of days) and drew on these results and others to differentiate
between this practice and that of euthanasia (Maltoni et al., 2009;
National Ethics Committee, 2007; Muller-Bush, Andres, & Jehser,
The decision to start continuous deep sedation, especially
when it is to overcome existential suffering, when the individual
is often conscious and their physiological symptoms are relatively
well relieved, is a difficult one. The cultural, religious and social
values of clinicians are being questioned, and the decision pro-
cess is fraught with strong emotions. The decision to adopt such
a measure presents the clinicians with a significant dilemma.
According to their professional dictates, their duty is to allevi-
ate suffering, not precipitate death. These are two axioms of their
profession. Faced with such a conflict when considering palliative
sedation, clinicians will often choose to turn to the law and ethi-
cal rules for guidance.
The debate continues in spite of the fact the Supreme Court
of the United States approved the practice of sedation in 1997
(Schuman-Olivier, Brendel, Forstein, & Price, 2008; Crenshaw,
2009). In two judgements regarding assisted suicide (Vacco v.
Quill) (Washington v. Glucksberg), the Supreme Court seemed to
distinguish palliative sedation from assisted suicide and, further-
more, to deem it the only legally acceptable practice (National
Ethics Committee, 2007). The Court did not explicitly mention
palliative sedation, but stated nonetheless its support of the
use of medication to alleviate pain and suffering in terminally ill
individuals even if it could render them unconscious and possi-
bly hasten the dying process (National Ethics Committee, 2007).
In the Canadian arena, in the Rodriguez v. British Columbia
(Attorney General) decision, the Court of Appeal states that sev-
eral medical organizations seem to approve the use of medica-
tion to relieve pain in palliative care while acknowledging that
this may sometimes hasten death. These medical organizations
specify that the primary intent is still to alleviate pain and men-
tal suffering in order to allow death without excessive suffer-
ing rather than hasten it. One needs to know that Ms. Rodriguez
appealed this decision to the Supreme Court of Canada in R. v.
Rodriguez. Without adjudicating on the issue of palliative seda-
tion, the Supreme Court considered that in Western democracies,
including Canada, assisted suicide is prohibited. The reason is
these states “recognize and apply the principle of the sanctity of
life as a general principle which is subject to limited and narrow
exceptions in situations in which notions of personal autonomy
and dignity must prevail.” The concepts of autonomy and dignity
are consistently invoked in decisions as to whether or not to
induce palliative sedation for unendurable suffering. This prac-
tice is still being debated, partly because of differences of opin-
ion as to what these legal and philosophical concepts stand for.
For example, does dying while afflicted with physical or psychic
suffering make an individual unworthy? May individuals reach-
ing the end of their lives freely decide to spend the rest of their
days in an iatrogenic coma?
Several ethical principles are frequently cited to justify the use
of palliative sedation, mainly the following: the doctrine of double
effect, the principle of proportionality, and the principle of auton-
omy (Morita, 2003).
Doctrine of double effect
According to this doctrine, a single act may have two dis-
tinct outcomes: a good one and a negative one, hence its name.
The doctrine’s tenets usually require four criteria to be met: (1)
The nature of the act must be good or morally neutral, (2) the
good effect must result from the act itself and not from the neg-
ative outcome, (3) the negative outcome must not be directly
sought, but can be foreseen and tolerated, (4) there must be pro-
portionality between the good and the negative outcomes; the
good one must exceed the negative one or at least balance it
(Crenshaw, 2009; Schuman-Olivier, Brendel, Forstein, & Price,
2008). Lo and Rubenfeld (2005) put forward a fifth criteria in
the context of the decision making regarding initiation of seda-
tion: (5) There is no other option that would be less harmful.
There is little consensus on invoking the double effect princi-
ple to justify the use of palliative sedation. For example, it was
suggested that it is rather difficult to make inferences regarding
the intents of a third party (Lo & Rubenfeld, 2005). In a study
conducted in the Netherlands, 47% of a group of more than 200
physicians recognized having intended—in part—to hasten the
dying process, and 17% having had explicitly wanted to cause
death by resorting to terminal sedation (Rietjens, van der Heide,
Vrakking, Onwuteaka-Philipsen, van der Maas & van der Wal,
2004). Moreover, still as a criticism to using the principles of
double effect, some do not make any distinction between an
action resulting in both a good effect and a negative effect if the
negative effect was foreseeable and, generally, society tends to
condemn individuals for their actions if their effects were fors-
eeable (Lo & Rubenfeld, 2005).
Principle of proportionality
In the current context, proportionality refers to a situation
where the suffering experienced by an individual is so intracta-
ble that resorting to palliative sedation is a justified medical act.
In certain situations where suffering is particularly unendurable,
one does not turn a blind eye to the risks associated with seda-
tion as a possibility to hasten the dying process, but one expects
the benefits to outweigh the risks. In order to assess proportion-
ality of a practice in palliative care, the following criteria can be
used: presence of a terminal illness, urgent need to relieve suffer-
ing and of course, informed consent freely given by the individual
or their representative (McIntyre, 2004). A criticism addressed to
the use of this ethical principle in the specific context of sedation
in palliative care is the fact that the prognostic assessment is usu-
ally not very precise, which means it is difficult to state categori-
cally whether or not death is really “imminent” (Rady & Verheijde,
2010). This prognosis is even harder to formulate when it con-
cerns end-of-life patients with pulmonary or cardiac affections
(National Ethics Committee, 2007). Is resorting to sedation as eth-
ical and justifiable if it turns out the individual’s prognosis is lon-
ger than predicted?
CONJ • RCSIO Summer/Été 2012 197
Principle of autonomy
The principle of autonomy refers to the capacity of an indi-
vidual to make free and informed choices and to act accordingly.
Regarding the global issues of palliative sedation, it is up to the
individual to give his/her consent while having the necessary
information about the practice’s benefits and risks, if he/she is
deemed to be capable and competent. Only in extraordinary cases
can a patient representative make this decision. In various judg-
ments, the Canadian justice system determined that based on the
principle of autonomy, an individual is free to refuse any treat-
ment, even if this decision can result in hastening the dying pro-
cess. For example, if an individual chooses to stop eating and
if he/she is then forced to take foods and fluids, this could be
considered a form of assault (Quill & Byock, 2000). Nevertheless,
despite the importance given to respecting an individual’s choices,
the principle of autonomy does not require anyone to engage in
practices that are in breach of laws or go against their own moral
principles (Rousseau, 2001).
The practice of inducing unconsciousness in the terminally
ill in the presence of a refractory symptom of a “physiologic”
nature (i.e. pain, delirium, myoclonus) appears to be more readily
accepted in care environments than when the refractory symptom
is of a “psychological” or “existential” nature (Bruce & Boston,
2011; Lo & Rubenfeld, 2005). In the first scenario, the clinician
seems to have easier access to visible and objective signs of an
individual’s suffering while in the second it is much harder to
objectively establish the refractory nature of the suffering (Morita,
Tsudona, Inoue, & Chihara, 2000). For physiological symptoms,
there seem to exist more guidelines regarding interventions to be
attempted before declaring the symptom to be refractory. In con-
trast, there are currently no clear guidelines on how to character-
ize existential suffering as refractory in the specific context of
Schuman-Olivier, Brendel, Forstein and Price (2008) pointed
out that at the time of their study not one article in the field of
psychiatry had focused on the current debate about resorting to
palliative sedation to alleviate existential distress. When dealing
with this type of suffering, the care team and the family face the
daunting challenge of distinguishing what could be qualified as
normal existential concerns at end of life and what appears to be
a more severe, perhaps even a “pathological” form of existential
distress requiring more aggressive interventions. Controversy
around deep sedation in this context is always present, as this
practice refers to death in some way. It may not hasten the dying
process to the extent survival time may not be affected by induc-
ing a varying degree of continuous deep sedation, but, by induc-
ing unconsciousness in individuals, aren’t we cutting them off
from themselves and their world? Isn’t this a form of social
Furthermore, when sedation is utilized to alleviate existen-
tial suffering, at what point does this practice start to reveal how
helpless we feel, as caregivers, before an unknown, which appears
to be totally out of our control? The alleviation of existential suf-
fering may be partly hindered by the nurse’s own vulnerabilities,
as she is confronted with her patient’s pain. It may be that the
fear of the unknown, death and suffering cause some form of dis-
tress in clinicians, including nurses, which motivates them to act
rapidly to bring relief to the individual, of course, but also to a
part of themselves.
Some psychological disorders are more prevalent in the ter-
minally ill than in the general population (Block, 2000; APES,
2008). In a few papers, an attempt was made to differentiate
between existential suffering per se and another type described
as “psychological” suffering (e.g., depression, anxiety) (Block,
2000; Schuman-Olivier, Brendel, Forstein, & Price, 2008). While
this article does not aim to exhaustively clarify how specific
psychological disorders present at end of life, it is important to
point out that the boundaries between psychological distress
(e.g., refractory depression) and existential distress are poorly
defined. There is most likely some overlapping between the two,
as existential suffering does not constitute a distinct entity, but
is more akin to a complex mixture. A thorough assessment of
distress is to be conducted by the nurse, as interventions may
vary according to the type of suffering. Certain elements can
sometimes guide the nurse, as she must be able to distinguish
between a psychological disorder and suffering of a more exis-
To a certain extent, it is not surprising for individuals facing
the end of their lives to experience some mood disturbances.
After all, these individuals must deal with a number of losses
while facing uncertainties relating to the dying process. When
one wants to establish a diagnosis of depression in a terminally
ill individual, the difficulty lies in that most somatic symptoms
associated with depression, as described in the Diagnostic and
Statistical Manual for Mental Disorders (DSM-IV-TR), result fre-
quently from the progression of the terminal illness (e.g., loss of
appetite, fatigue, weight loss). In this context, it is suggested to
rely more on the strictly “psychological” symptoms of depres-
sion to establish a diagnosis such as persistent depressive mood,
loss of interest and pleasure, guilt feeling, lower self-esteem and
continuous suicidal ideation (APES, 2008). In the presence of exis-
tential suffering, by contrast with clinical depression, it is pos-
sible that the individual has not completely lost interest for all
activities and that guilt feeling may be absent, too. Despite these
markers, differentiating between depression and existential dis-
tress may be a difficult task (Schuman-Olivier, Brendel, Forstein,
& Price, 2008).
A certain increase in the anxiety level is not unusual but, con-
trary to some beliefs, an elevated anxiety level is not unavoid-
able in the terminal phase and it should not be tolerated. In
palliative care, it is important to assess the potential presence
of anxiety disorders (e.g., acute stress disorder, anxiety disorder
due to a general medical condition), particularly because of the
higher prevalence of these disorders in this population, but also
because when it is left untreated, the anxiety disorder may bring
the subject to ask that the dying process be hastened. Beyond
its association with an anxiety disorder, it is critical to be mind-
ful that anxiety may be the evidence of poorly managed physio-
logical symptoms (e.g., pain, dyspnea, urinary retention) or even
of medication or treatment side effects. Existential suffering
may generate significant anxiety, just as psychological suffering
The difficulties encountered in resorting to sedation to
relieve existential suffering come in a large part from the lack
of conceptual models for the nature of this suffering. There do
exist a few guides and “guidelines” regarding the utilization of
palliative sedation to alleviate refractory existential suffering.
However, as Bruce and Boston (2011) point out, these guides
assume one already knows about the nature of existential suf-
fering, the ways to identify it and deal with it, but this is not
supported in the literature.
There are a limited number of papers on existential suffer-
ing in the context of palliative and oncology care (Blinderman &
Cherny, 2005). The work of Dame Cicely Saunders, the founder
of the modern hospice movement in England, in the 1960s had a
considerable influence on the management of individuals facing
198 CONJ • RCSIO Summer/Été 2012
a terminal illness. She introduced the concept of total pain,
which implied that all aspects of an individual (e.g., psychologi-
cal, social, spiritual) may be affected by an incurable disease and
that to provide adequate relief one must relieve the whole being
through a holistic approach (Saunders, 1988). Subsequently, sev-
eral authors attempted to investigate the nature of existential
suffering in the end-of-life context. Cassel (1982) wrote that suf-
fering can be defined as a state of severe distress associated with
events that threaten the intactness of the person. Existential con-
cerns are frequently present among cancer patients (Blinderman
& Cherny, 2005). They can relate to various issues such as hope-
lessness, futility, meaninglessness, disappointment, remorse,
death anxiety and disruption of personal identity (Blinderman &
Cherny, 2005). Kearny (2000) defined suffering as an experience
resulting from an attack on the whole person. After completing a
literature review, Morita (2004a) suggested recurring themes for
the sources of existential suffering including meaninglessness
of current life, loss of social roles, feeling of dependency, fear
of being a burden for others, guilt, incomplete projects. Many
believe that experiencing existential concerns at end of life is
universal, but these concerns do not automatically engender dis-
tress in everyone (Chochinov, 2006). Kissane (2001) suggested
the demoralization syndrome as a psychiatric diagnosis to iden-
tify existential distress. This syndrome consists in: 1) hopeless-
ness, loss of meaning, and existential distress, 2) pessimism,
powerlessness, sense of being trapped, personal failure, lack
of a worthwhile future, 3) absence of motivation to cope differ-
ently, 4) isolation and lack of support, 5) duration of more than
two weeks, and 6) lack of a major depression diagnosis or other
psychiatric diagnoses. Despite the rich contributions from all
these studies, there is still no universally accepted definition in
the literature. Without a common language, it is hard to develop
interventions and justify the use of such an extreme practice as
Much of the current research on suffering is grounded in
philosophical concepts. Several existentialist thinkers of the
19th and 20th centuries reflected primarily on the conditions
of existence and human suffering. Existentialists emphasize the
subjective experience of each individual. Human beings come
into existence first, and then create their own essence out of
interaction with their surroundings and among themselves.
Differences encountered amidst the supporters of this philo-
sophical approach rest mainly upon the way each individual
chooses to make sense out of his/her life, the potential obsta-
cles to attaining his/her goals and the involvement, or not,
of God along this path. The main themes addressed by exis-
tentialists are futility of life, indifference, anguish, boredom,
alienation, freedom and nothingness. Concerning death, man
ceases to be and the only way he can continue to exist is in
the memories of others. He does not suffer either, as anguish
does not belong to death but to living. A further exploration of
these writings will contribute to a deeper understanding of the
sources of existential suffering.
Implications for nursing practice
Initiating continuous deep sedation may be a difficult expe-
rience for nurses (Morita, Miyashita, Kimura, Adachi, & Shima,
2004b). Nurses play a central role as patient advocates through-
out the health care system (Bruce & Boston, 2011). However, in
situations as emotionally charged as the one depicted in the
clinical vignette at the beginning of this article, nurses can end
up questioning the moral implications of their role as caregiv-
ers. Jameton (1984) talks about the notion of moral uncertainty.
Taking part in interventions like palliative sedation where nurses
are unsure it constitutes the best option is likely to confront
nurses with this kind of uncertainty. This can give rise to dis-
comfort, stress and even a state of frustration (Cohen & Erikson,
2006). There are few nursing science papers about the use of pal-
liative sedation (Bruce & Boston, 2011). Nurses are invited to take
a greater part in the current debate around this practice (Bruce
& Boston, 2011). Given the fact they are the caregivers who gen-
erally spend the most time with the patient in comparison with
the other care team members, it is paramount that nurses be
involved in decision processes (Crenshaw, 2009).
Furthermore, at the bedside of the dying, nurses often find
themselves confronting their own vulnerability concerning ill-
ness, suffering and death. They can protect themselves by dis-
tancing themselves from their patients. They are not always
aware that their own sources of distress can become obstacles to
address the suffering of others. Nurses must regularly consider
the impact that the strong emotions such as fear and helpless-
ness they feel at the sight of a suffering patient may have on the
decision to initiate or participate in palliative sedation. The deci-
sion is most likely based on a desire to calm a suffering patient,
but couldn’t there also be more or less conscious motivations
to want to calm themselves, as caregivers confronted with pains
that defy them? It is also relevant to stress at this time the lit-
tle importance granted to the the phenomenon of suffering in
the general nursing training curriculum. While learning about
relieving physical pain remains largely unaddressed, the theme
of suffering simply goes unmentioned. It’s not a matter of devel-
oping guidelines to address existential suffering at end of life,
as this would be completely counterproductive. Suffering defies
objectivity. Rather, it is a matter of promoting greater awareness
among nurses about the importance of people-oriented skills
over know-how in the specific context of end-of-life care. It is
also a question of helping nurses distinguish their own distress
from that of their patients so that they can improve the quality
of their presence by their side in the closing moments of their
lives. Moreover, the organization must promote an atmosphere
where nurses feel heard, supported and respected in their opin-
ions and choices.
To conclude, palliative sedation is an extreme measure that
remains controversial, particularly when it is utilized to alleviate
existential distress as it refers to the practice of assisted suicide
and euthanasia. Through different means, these three practices cut
off individuals from themselves, from their environment and from
time. Palliative sedation is considered to be a last resort method
of relieving suffering. We rely on the laws that permit it and on
certain ethical principles that guide it but, to linger on the issue,
aren’t we turning our attention away from the real problem, that is
to say, what is this existential suffering that we are trying to stun
into unconsciousness? Few studies have dwelt on the matter, lea-
ving nurses feeling helpless in front of such suffering. The danger
regarding the use of palliative sedation is that it could be conside-
red an easy way of providing quality palliative care without having
to consider all aspects of suffering, including its existential one. In
a study conducted by Blondeau, Roy, Dumont, Godin and Martineau
(2005) about the attitudes of physicians and pharmacists toward
the use of sedation at the end of life, one participant had asked a
question worth thinking about: Can the lack of a meaningful exis-
tence be treated with sleep?”
The author would like to thank David K. Wright, Dr. H. Chang
and Dr. D. Scarfone for their contributions to the thinking
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