The role of advance euthanasia directives as an aid to communication and shared decision-making in dementia

Abstract

Recent evaluation of the practice of euthanasia and related medical decisions at the end of life in the Netherlands has shown a slight decrease in the frequency of physician-assisted death since the enactment of the Euthanasia Law in 2002. This paper focuses on the absence of euthanasia cases concerning patients with dementia and a written advance euthanasia directive, despite the fact that the only real innovation of the Euthanasia Law consisted precisely in allowing physicians to act upon such directives. The author discusses two principal reasons for this absence. One relates to the uncertainty about whether patients with advanced dementia truly experience the suffering they formerly feared. There is reason to assume that they don't, as a consequence of psychological adaptation and progressive unawareness (anosognosia). The second, more fundamental reason touches upon the ethical relevance of shared understanding and reciprocity. The author argues that, next to autonomy and mercifulness, "reciprocity" is a condition sine qua non for euthanasia. The absence thereof in advanced dementia renders euthanasia morally inconceivable, even if there are signs of suffering and notwithstanding the presence of an advance euthanasia directive. This does not mean, however, that advance euthanasia directives of patients with dementia are worthless. They might very well have a role in the earlier stages of certain subtypes of the disease. To illustrate this point the author presents a case in which the advance directive helped to create a window of opportunity for reciprocity and shared decision-making.

Full text

The role of advance euthanasia directives as an aid
to communication and shared decision-making in
dementia
C M P M Hertogh
Correspondence to:
Dr Cees M P M Hertogh,
Institute for Research in
Extramural Medicine,
Department of Nursing Home
Medicine, VU University Medical
Center, Van der Boechorststraat
7, 1081 BT Amsterdam, The
Netherlands; cmpm.hertogh@
vumc.nl
Received 27 December 2007
Revised 27 August 2008
Accepted 4 November 2008
ABSTRACT
Recent evaluation of the practice of euthanasia and
related medical decisions at the end of life in the
Netherlands has shown a slight decrease in the frequency
of physician-assisted death since the enactment of the
Euthanasia Law in 2002. This paper focuses on the
absence of euthanasia cases concerning patients with
dementia and a written advance euthanasia directive,
despite the fact that the only real innovation of the
Euthanasia Law consisted precisely in allowing physicians
to act upon such directives. The author discusses two
principal reasons for this absence. One relates to the
uncertainty about whether patients with advanced
dementia truly experience the suffering they formerly
feared. There is reason to assume that they don’t, as a
consequence of psychological adaptation and progressive
unawareness (anosognosia). The second, more funda-
mental reason touches upon the ethical relevance of
shared understanding and reciprocity. The author argues
that, next to autonomy and mercifulness, ‘‘reciprocity’’ is
a condition sine qua non for euthanasia. The absence
thereof in advanced dementia renders euthanasia morally
inconceivable, even if there are signs of suffering and
notwithstanding the presence of an advance euthanasia
directive. This does not mean, however, that advance
euthanasia directives of patients with dementia are
worthless. They might very well have a role in the earlier
stages of certain subtypes of the disease. To illustrate this
point the author presents a case in which the advance
directive helped to create a window of opportunity for
reciprocity and shared decision-making.
Recently the Dutch Euthanasia Law that came into
effect in 2002 was evaluated. The results of this
evaluation were published together with the third
nationwide study on the frequency and character-
istics of euthanasia, physician-assisted suicide and
related medical acts at the end of life, based on data
from 2005.
12
This third end-of-life study was the
first one performed under the new law and
showed, perhaps contrary to the expectations of
critics of the Dutch policy, a moderate decrease in
the rates of euthanasia and assisted suicide. This
paper focuses on an until-now-neglected finding of
this study, namely, the decrease in cases of
euthanasia in patients with dementia and an
advance euthanasia directive (AED). While in the
second follow-up study, based on data collected
just before the enactment of the Euthanasia Law,
3% of the respondents indicated that they had
experience with euthanasia in dementia patients
with an AED, no cases were reported in the 2005
study.
13
This is all the more stupefying because the
only new element of the law—which is largely
consistent with existing jurisprudence and already
prevailing rules of prudent practice—was that it
gave a formal legal status to AEDs, thereby raising
the hope of many (mainly older) authors of AEDs
to see their written request complied with in the
case of dementia or a related disorder.
After a brief overview of the Euthanasia Law,
this paper addresses the reasons for this gap
between the formal possibility offered by the law
and actual end-of-life care. This discrepancy raises
the question of whether AEDs can have any role
whatsoever in the practice of physician-assisted
death related to patients with dementia. I believe
they can, but only in restricted and circumscribed
types of cases. This viewpoint will be exemplified
by the case that is presented in the second part of
this paper.
EUTHANASIA AND ASSISTED SUICIDE: CONCEPTS
AND RULES
Under Dutch law, euthanasia is defined as ‘‘the
intentional termination of a person’s life at his/her
explicit request’’. Assisted suicide refers to the act
of helping people to terminate their own life at
their own request. The essence of the Euthanasia
Act is that a physician-assisted death (which has to
be reported to a review committee) can go
unpunished on condition that the physician
follows these rules of due care:
1) the physician is satisfied that the patient’s
request was voluntary and well considered;
2) the physician is equally satisfied that the patient
suffered ‘‘hopelessly’’ and ‘‘unbearably’’;
3) the physician has informed the patient thor-
oughly about the patient’s situation and prospects;
4) the physician together with the patient arrived
at the conclusion that there was no reasonable
alternative to relieve the suffering;
5) at least one other independent physician has
seen the patient and has given a written assess-
ment of the previous requirements;
6) the life termination has been performed in a
professional and careful way.
Within these six requirements, a distinction can
be made between the more procedural and
technical rules (5 and 6) and the more substantive
ones that refer to (the quality of) the decision-
making process (1–4). The latter constitute a
coherent whole of mutually dependent require-
ments. Thus, the first requirement can be met only
if the patients are well informed about their
condition and prognosis (requirement 3), as well
as about any alternative interventions that might
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100 J Med Ethics 2009;35:100–103. doi:10.1136/jme.2007.024109

help to alleviate their situation (requirement 4). Likewise, the
physician can only be persuaded that the patients perceive their
situation as one of hopeless and unbearable suffering (require-
ment 2) on the basis of the joint conclusion that for these
patients there is no other way to stop the suffering than
euthanasia or assisted suicide (requirement 4).
It follows from these rules that the practice of euthanasia is
thoroughly rooted in the end-of-life care for competent patients.
This, of course, is not surprising in view of its origin in the care
for patients with cancer. Up until today, oncological diseases
still constitute the majority of euthanasia cases as reported to
the review committees. However, ever since the beginning of
the 1990s a societal debate has been taking place in The
Netherlands on the possibility of euthanasia in incompetent
patients with an AED, with dementia being one of the most
prominent and most feared conditions for which people in an
ageing society have been seeking an end-of-life solution. The
Euthanasia Law offered such a solution by stipulating (in article
2.2.) that a physician can comply with an AED of an
incapacitated patient, provided that ‘‘the requirements of due
care are met in a corresponding way’’.
REASONS FOR THE ABSENCE OF EUTHANASIA IN ADVANCED
DEMENTIA
Even before the advent of the law regulating the ending of life,
active termination of the life of a patient with dementia and a
euthanasia declaration was already extremely rare. On analysis,
the low percentage (3%) reported in the second end-of-life study
might still be an overestimate, since this study only asked
physicians about their intention to hasten death, which is a
rather broad formulation also covering interventions such as
intensifying symptom relief. In addition, with regard to the
choice of the appropriate drugs, to hasten death is far from
being identical to intentionally terminating a patient’s life.
Although officially opioids have long since been advised against
in performing euthanasia, it now appears in retrospect that
physicians at the time of the second follow-up study might have
had a relatively poor understanding of the life-shortening effect
of these drugs and thus overestimated their lethal potential.
2
A
change in attitude towards the use of opioids, together with an
improved knowledge of palliative care, might in itself explain
the difference between the second and the third end-of-life
studies. But in my view these factors are not sufficient to
explain the virtual absence of euthanasia in cases of advanced
dementia, despite the existence of a law that formally allows for
such a practice.
What seems to be more important here is the uncertainty
about whether or not people in the advanced stage of dementia
truly suffer from the perspective they feared at the time they
drew up their AED. In recent years, several expert committees
have addressed this issue and arrived at a similar conclusion,
namely, that the condition of dementia as such does not meet
the above-mentioned second requirement of lawful euthanasia,
because of the declining disease-insight (asonognosia) and the
lack of awareness of cognitive deficits that typically accompany
the disease trajectory.
4–7
The realisation of having dementia—
once feared as a source of degrading suffering—is progressively
lacking from the patients’ subjective experience, rendering it
impossible for them to evaluate the present situation as
unbearable and/or hopeless. In addition, recent research focus-
ing on the patient’s perspective has demonstrated that
psychological coping strategies also contribute to the fact that
people with dementia often come to terms with the con-
sequences of their disease and adapt to the situation of
dementia.
8
In addition to neurologically based unawareness,
this psychological response, too, might help to explain the
clinical observation that people with dementia frequently act
and behave differently from the values and preferences held in
the past and laid down in the AED. And although there may be
considerable doubt as to the decisional capacity of the now
demented author of the AED, care givers will not disqualify the
current person as a moral agent and will thus act in accordance
with the person’s present preferences as much as possible.
9
Yet, the paradigm of unaware, demented patients affirming
their present state does not typify the whole phenomenological
spectrum of dementia. Even in the absence of insight, dementia
can be accompanied by more or less severe suffering from
several sources. For that reason, some protagonists of euthana-
sia have pleaded to expand the scope of unbearable suffering in
dementia by including symptoms such as anxiety, depression,
various forms of behavioural problems and the loss of control of
one’s environment. What speaks against such proposals is that
some aspects of these problems are clearly related to failing
palliative care, inadequate symptom control and a social
environment that lacks understanding and exposes the person
with dementia to the detrimental effects of what Tom Kitwood
has coined ‘‘malignant social psychology’’.
910
And insofar as
failing care can never be a viable motive for euthanasia, there is
an urgent need for improvement here. Nonetheless, without
underestimating the promises of palliative and ‘‘person-centred
care’’, I feel we must acknowledge that even the most dedicated
care givers regularly find themselves standing empty-handed in
the face of insoluble suffering. This is an embarrassing and
painful situation, but the question to be asked here is whether
the insolubility of this suffering also makes it ‘‘unbearable and
hopeless’’ in the sense of the Euthanasia Law. Put differently: if
a patient with an AED referring to this situation suffers from
such a form of insoluble suffering, would this be sufficient
reason to perform euthanasia?
When answering this question, one must bear in mind that
the designations ‘‘hopeless’’ and ‘‘unbearable’’ in the second
requirement of due care do not primarily refer to the intensity
or severity of the suffering, but to the shared conclusion of
doctor and patient that—all things considered—for this
particular person there is no way to alleviate the person’s
situation other than euthanasia. It is clear that the state of
severe dementia precludes communication at this level. There
can be no intersubjectivity here in assessing the patient’s
condition, because of the loss of a common shared world of
meaning that typifies the situation of advanced dementia.
11
It is
often said that in advanced dementia ‘‘the suffering cannot be
verified’’, but this is an inaccurate formulation that overlooks
the essence of the second due-care requirement. For we are
dealing here not with hypotheses that have to be tested but
with an intensive interpersonal interaction. Every physician
who has ever had to deal with euthanasia will agree that this
ultimate form of relief of suffering is possible only in the
context of a relation of trust and mutual understanding. An
AED can never replace this.
Thus, even in the face of obvious suffering, ending a
demented patient’s life out of respect for the AED is still
morally inconceivable. All we can do here is to give our utmost
in trying to relieve the hardship of the patient’s condition,
although in the end we will have to acknowledge that some
suffering remains indeed insoluble.
To summarise, there are two main reasons why AEDs are not
complied with. The first is that many patients—through a
combination of loss of insight into what is happening to them
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and psychological adaptation—don’t appear to suffer in the
way they feared at the time they drew up their advance
directive; this is the most frequently formulated argument
against AEDs encountered in the debate on this subject and in
official policy-papers. The second reason, however, is more
fundamental and relates to the above-quoted section of the
euthanasia act stating that a written advance euthanasia
request can be complied with, provided that the due care
criteria are met ‘‘in a corresponding way’’. It is this cryptic
formulation that precisely obscures what is essentially lacking
in advanced dementia: the possibility of a shared understanding.
Put in more abstract terms, the problem of the discrepancy
between the formal possibility the legal system offers and
current end-of-life care in dementia touches upon the ethical
foundation of euthanasia. This practice is generally conceived as
an exceptional kind of assistance, entrusted to physicians, based
on the values of autonomy (of the patient) and beneficence or
mercifulness (as moral justification of the involvement of the
physician). Take away one of these pillars and the whole of the
euthanasia edifice collapses: it is not possible without a
sustained autonomous request and it is not possible without a
(bilateral) assessment of suffering, either. The problem of the
AED bears upon this foundation in a specific way, because it
clarifies the relevance of yet another moral value that is essential
to euthanasia, namely, the value of reciprocity. For mercifulness
cannot exist without receptiveness (or responsiveness, to
borrow Joan Tronto’s wording of this essential value in the
practice of care-giving).
12
The Samaritan can be helpful only if
the wounded and robbed traveller to Jericho is ready to accept
his assistance, not if he rejects him, feels threatened by him or
does not understand him. This is all the more relevant when the
help that is offered consists not in saving life, but in assisting
someone to die. Only the receptiveness of the other makes the
Samaritan into a merciful giver and this receptiveness cannot be
replaced by a distant request on a piece of paper. What this
assistance needs is assenting reciprocity up until the moment it
is given. Thus, the significance of reciprocity as an additional
moral condition that supports the structure of the euthanasia
practice clearly shows the limited role of AEDs. However, this
conclusion does not imply that they have no function
whatsoever in the practice of euthanasia. Instead, recognition
of the crucial role of reciprocity does help to specify the
circumstances under which an AED might be of assistance. This
argument is illustrated by the following case.
CASE
Ten years after her husband died from dementia, Mrs Brown
(aged 85) had a stroke. After a few days in hospital she was
transferred to our geriatric rehabilitation centre. On admission
she had a mild right-sided hemiplegia, combined with transcor-
tical sensory aphasia and alexia. She was disoriented in time and
place and had memory problems consisting in impaired recall of
recent events with relatively intact recognition. Neuro-
psychological testing 2 and 6 weeks later also showed some
perseveration, a lack of initiative and slightly impaired executive
function.
Initially she had a varying awareness of her difficulties, and
on confrontation she could become very angry with herself and
her environment. What frustrated her specifically were her
memory problems and her difficulties in making herself under-
stood. Her outbursts often interfered negatively with the
treatment programme. Regularly she refused to attend her
speech therapy and at times she also refused her medication.
Her children—who visited her daily—did their utmost to
motivate their mother. When she refused her meals, her
daughter prepared her favourite dish; when she said no to her
therapy, her son accompanied her and tried to motivate his
mother to continue the rehabilitation programme. Several
attempts were made to find out the reasons for her seemingly
dissenting behaviour, but partly due to her impaired memory
and speech, partly due to her children’s embarrassment, these
were inconclusive. During such talks she tended to look her
daughter in the eye as if asking her for help but always uttered
herself in terms and signs that seemed to indicate a consenting
attitude. So she was held on the rehabilitation programme and
in order to rule out possible depression, she also received a
treatment with an SSRI (selective serotonin reuptake inhibitor)
anti-depressant. Gradually she became more resigned and
apathetic. She took her medication and meals and attended
her therapy sessions but showed no further initiative.
Nevertheless, 4 months after her admission Mrs Brown had
made a reasonable functional recovery. She could walk with a
walking aid under supervision and her speech had somewhat
improved. On repeated neuropsychological testing, however,
her multiple cognitive impairments (of memory, language,
attention, initiative and executive function) were confirmed,
with no significant improvement except for her linguistic
performance. It was concluded now that Mrs Brown had
subcortical vascular dementia, based on lacunar infarctions and
white matter disease.
When these findings were discussed with her and her
children, Mrs Brown’s reaction was heartbroken and desperate.
It was at this time that the children presented the living will
that their mother had drawn up 7 years earlier, containing an
AED in case of dementia. During the past months this
document—and the promise they had made to their mother
to see to it that its content was respected—had weighed heavily
upon them. But the prospect of possible recovery, reinforced by
her referral to the rehabilitation department, made them decide
to support their mother in the best possible way and hence not
to discuss the advance directive as long as she was on the
rehabilitation programme. However, now that the outcome of
this process and their mother’s prospects were becoming clear,
they felt it their duty to present her earlier documented
opinions on a life with dementia. And although Mrs Brown had
forgotten all about her living will—and had never brought up
the subject herself—she recognised it as her own, grasped it
with both hands and made a very clear statement that if this
was what the future had in store for her, life wasn’t worth
living anymore.
From this moment on she remained very consistent in her
request, also in the absence of her children, and each time the
advance directive was brought up she repeated her wish. We
started the euthanasia protocol and went through several
discussions, always with the living will as a basic document
for our talks. With this document in her hands, Mrs Brown
convincingly argued her case, notwithstanding her handicapped
speech. In the next stage she was interviewed by a geriatrician,
an old-age psychiatrist and a consultant in palliative care. They
all agreed that Mrs Brown’s request was voluntary and well-
considered and that she experienced her situation as hopeless
and unbearable. Nine months after her admission to the
geriatric rehabilitation centre, she was given the requested
assistance and died peacefully in the presence of her family.
ANALYSIS AND CONCLUSIONS
It should be emphasised that the case presented here is very
exceptional and must be interpreted with caution. It does,
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102 J Med Ethics 2009;35:100–103. doi:10.1136/jme.2007.024109

however, illustrate under what circumstances an AED can be
useful for both patient and physician. Because Mrs Brown’s
recognition memory was spared, her previously drawn up AED
helped her to tap into her formerly held values. As a sort of
reminiscence work, the presentation and discussion of the
advance directive allowed her to get access to her past self,
which she could still identify with. Also, the advance directive
compensated, as it were, for her lack of initiative. The
combination of these features—relatively intact recognition
performance and lack of initiative—is rather typical of vascular
cognitive impairment and vascular dementia and not so much
of Alzheimer disease, the type of dementia that is far more
common at this age.
13
In addition, the patient’s executive
functioning ability, though slightly impaired, still allowed her to
evaluate her current situation in the light of her advance
directive, which is a relevant criterion for decisional capacity.
But most importantly, the AED in this case provided the
common ground that allowed patient and physician to engage
in a process of shared decision-making and reciprocity that
ultimately resulted in a medically assisted suicide.
Although, in general, advance directives are meant to
represent a demented patient’s competent beliefs after the
patient has lost the ability to participate in decisions regarding
care and (medical) treatment, requests for euthanasia in
advance directives are clearly unfeasible at this stage. In my
view, however, there might be a window of opportunity, a
restricted period of time in closely defined circumstances, during
which AEDs can offer an opportunity to be acted on. As can be
inferred from the case presented here, early dementia, especially
with intact recognition and relatively spared executive func-
tioning, can provide such an occasion. Consequently, AEDs, as a
specific type of advance directive, derive their value from the
possibility they offer to create and support a shared under-
standing between doctor and patient before competence is lost.
It would therefore be advisable to adjust the Euthanasia Law in
this direction in order to avoid misunderstandings and false
expectations from people with AEDs and their healthcare
proxies.
Finally, as AEDs do not execute themselves, a huge
responsibility is placed on others, especially family members,
because it is up to them to take the initiative of presenting the
directive, thus initiating the deliberation process. This respon-
sibility often causes moral distress, as is illustrated by the
hesitation of Mrs Brown’s children to raise the subject of her
AED in their contacts with the healthcare professionals.
Research and clinical experience affirm that healthcare proxies
often underestimate the gravity of the moral obligation they
engage in, when accepting the responsibility of seeing an AED
complied with.
7
Many of them eventually shy away from this
responsibility, which might be an additional reason for the
absence of euthanasia in patients with dementia and an advance
directive. In this respect, also, the case presented here is
exceptional.
Competing interests: None declared.
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