Alzheimer's and life termination

Uit: Bioethica Forum, 2, 2009, 1, 33-34.

Ron Berghmans, Bert Molewijk and Guy Widdershoven

Alzheimer’s disease and life termination: the Dutch debate


Introduction

Many people fear dementia and some would prefer an earlier
death over having to progress into the final stages of Alzheimer’s
disease. One way to avoid this is to stop eating and
drinking or to commit suicide. One may also wait for a lifethreatening
illness and then refuse treatment. Or one may
ask for assisted suicide or euthanasia, as in the case of the
Flemish writer Hugo Claus, whose life was terminated on his
request by a physician in March 2008. Assisted suicide and
euthanasia are legal only in a few countries worldwide; in
the Netherlands, euthanasia (the intentional ending of the
life of a person on his or her request) and physician assisted
suicide (PAS) can be legally acceptable if ‹due care criteria› are
met: the request is voluntarily made and well considered and
expresses an enduring wish; the suffering is unbearable and
without prospect of improvement; the patient is informed
about the situation and prospects; no reasonable alternative
means exist to make life bearable; another, independent physician
is consulted, and the termination of life is performed
with due medical care and attention.
Internationally, much controversy exists over the legitimacy
of assistance in dying if this involves actively and deliberately
shortening the life of the patient. In the Netherlands there is
debate over life termination when patients do not (or not only)
suffer from somatic conditions, but (also) from mental disturbances
such as in case of chronic mental illness, Alzheimer’s
disease or other neurological disorders. Currently, there is
controversy over the legitimacy of PAS and euthanasia in
cases of dementia (2, 3, 6). Debates center on two possible
scenarios:
1. assistance in life termination on the request of a patient
in the early phase of Alzheimer’s disease, and
2. life termination based on an advance directive in cases
where the patient has become incompetent.
Both raise common, but also different and specific ethical
issues. Common is that ‹unbearable suffering› is difficult to
assess. A crucial difference between the two scenarios involves
the voluntary and enduring request; in the first scenario
it is the current request of the patient (which may be
reconfirmed until the life terminating action takes place); in
the second scenario it is the past request which cannot be
reconfirmed because of incapacity. These issues are further
explored below.

Physician-assisted suicide in the early stage of
Alzheimer’s disease

After a diagnosis of Alzheimer’s disease, a person may request
PAS. In cases of dementia, it commonly is the prospect
of future decline of (cognitive) capabilities and the accompanying
loss of dignity and increase of dependency which motivates
requests for assisted suicide or euthanasia. Can such
a request be a well-considered wish of a competent person?
In the early stages of Alzheimer’s, and after the first confusion
following the diagnosis is over, patients may very well
be able to validly request PAS, as much as they can be able to
validly decide about (life saving) medical treatments and
other life decisions.
And can the motive for requesting assistance in suicide be
qualified as ‹unbearable suffering›? Some argue that this cannot
be the case, because such suffering should be in the present
and actually experienced. As Den Hartogh (2) argues: «For the
person’s request in his own sincere view is not motivated by his
present suffering at all, but by his expectations for the future.»
Nevertheless, in the Netherlands there have recently been a
number of cases involving Alzheimer’s patients in which the
regional euthanasia review committee retrospectively concluded
that the prospect of further decline of cognitive and
other capabilities of the currently competent person could be
qualified as ‹unbearable suffering›. In these cases the patients
sometimes had experience with the illness course of a loved
one. The fearful prospect of personal mental decline (as the
fear of suffocation in patients suffering from lung conditions)
may thus imply actual (unbearable) suffering.

Termination of life and dementia
advance directives

The Dutch Euthanasia Act a.o. addresses the legal status of a
dementia advance directive requesting active life termination
for a time when the person will be incompetent. The Act
recognizes both written directives (living wills) and oral requests
as legitimate. The recognition of written directives is
especially important where a doctor decides to comply with
a request for euthanasia in circumstances where the patient
is no longer able to express his wishes. In such circumstances,
a written directive counts as a well-considered request for
euthanasia. However, an advance directive can never discharge
the physician from his duty to reach his own decision
on this request in the light of the statutory due care criteria.
For dementia advance directives this implies that an assess-
ment must be made of the unbearability of the actual suffering
of the patient who has become incompetent and unable
to reconfirm the euthanasia request.
In the opinion of the Dutch government, the presence of dementia
or some other such condition is not in itself a reason
to comply with a request for aid in life termination. «For
some people, however, the very prospect of one day suffering
from dementia and the eventual associated loss of personality
and dignity is sufficient reason to make an advance directive
covering this possibility. Each case will have to be individually
assessed to decide whether, in the light of prevailing medical
opinion, it can be viewed as entailing unbearable suffering
for the patient with no prospect of improvement.»
Some argue that it is difficult for physicians to act in such
cases of euthanasia advance directives in accord with the
rules of due care (1, 4). Previously, the Dutch Medical Association
took the view that in cases of comorbid somatic illness it
could be conceivable that an incompetent dementia patient
was suffering unbearably (5). Nursing home physicians have
pointed out that they consider it unimaginable that they
would actively terminate the life of a demented patient who
is unable to reconfirm his euthanasia request, and who may
find no dissatisfaction in his demented existence.
No cases of euthanasia based on a dementia advance directive
have yet been reported to the regional review committees
or the public prosecutor. However, with an estimated
notification rate of 80.2% in 2007, this does not mean that
such cases have never occurred. Research shows that in the
experience and opinion of interviewed nursing home physicians
«the patient’s suffering was unbearable to a very high
degree in four of 39 cases [of euthanasia advance directives
of demented patients, RB, BM, GW], to a high degree in six
cases, and to a lesser degree in 14 cases.» In the other 15 cases
they did not think that the patient’s suffering was unbearable.
This means that according to physicians, it is not hypothetical
that a patient in a progressed state of Alzheimer’s
disease may experience unbearable suffering. Reasons for
considering the suffering unbearable included: dementia
itself (from the progressive deterioration or because the patient
did not understand things anymore and was afraid),
increasing dependence, agitation or confusion, anxiety, pain,
cramps or contractures, difficulty breathing, pressure ulcers,
vomiting, and depressed mood (7). The degree of suffering
was particularly associated with breathing difficulty, cramps
or contractures, agitation or confusion, pain, and anxiety.
So although Alzheimer’s disease per se may not involve unbearable
suffering, a case can be made for arguing that accompanying
symptoms, as well as comorbid conditions, may
lead to the conclusion that a person suffers unbearably.


Conclusion

Life termination in Alzheimer’s disease raises complex ethical
questions. It cannot be ruled out that in particular circumstances
physician-assisted suicide in the early stage of
the illness may be justified on the basis of the consideration
that the person suffers unbearably from the prospect of further
progression of his condition. Neither do we think that
it is defensible to categorically rule out euthanasia in advanced
stages of dementia on the basis of a previously formulated
euthanasia wish in an advance directive, when the patient
actually suffers.
More debate is needed about the issue of suffering in dementia,
both with regard to the prospect of progressive deterioration
in case a person is diagnosed with Alzheimer’s disease,
as well as regarding the possibility of suffering during the
process of dementia, particularly in the stages when the patient
has lost decisional capacity. Also, more debate is necessary
about the moral justification of life terminating acts in
dementia. Is it exclusively the prevention of unbearable suffering?
And what, if anything, counts (or does not count) as
unbearable suffering? Only rational debate, together with
empirical research, may clarify these issues and foster careful
and responsible practices at the end of life.


References

1. Delden, J.J.M. van, The unfeasibility of requests for euthanasia in
advance directives. Journal of Medical Ethics, 30, 2004, 447–452.
2. Hartogh, G. den, Euthanasia. Reflections on the Dutch discussion.
Annals of the New York Academy of Sciences, 913, 2000, 174–187.
3. Health Council of the Netherlands, Dementia. The Hague: Health
Council of the Netherlands, 2002; publication no. 2002/04E.
4. Hertogh, C.M.P.M., Boer, M.E. de, Dröes, R.-M. & Eefsting, J.A., Would
we rather lose our life than lose our self? Lessons from the Dutch
debate on euthanasia for patients with dementia. American Journal
of Bioethics, 7, 2007, 4, 48–56.
5. KNMG, Medisch handelen rond het levenseinde bij wilsonbekwame
patiënten. [Medical action in regard to the end of life in incompetent
patients] Houten/Diegem: Bohn Stafleu Van Loghum, 1997.
6. NVVE, Nederlandse Vereniging voor een Vrijwillig Levenseinde,
Perspectien op waardig sterven. [Perspectives on dying with dignity]
Amsterdam, February 2008. (www.nvve.nl)
7. Rurup, M.L., Onwutaka-Philipsen, B.D., Van der Heide, A., Van der
Wal, G. & Van der Maas, P.J., Physician’s experiences with demented
patients with advance directives in the Netherlands. Journal of the
American Geriatrics Society, 53, 2005, 1138 –1144(7).


Bioethica Forum/2009/Volume 2/No. 1