Order 890138: euthanasia for people with dementia

NEUROLOGICAL UPDATE

Dementia and assisted suicide and euthanasia

Inez D. de Beaufort1 • Suzanne van de Vathorst1,2

Received: 1 March 2016 / Accepted: 9 March 2016 / Published online: 26 March 2016

� The Author(s) 2016. This article is published with open access at Springerlink.com

Abstract The number of dementia patients requesting

euthanasia in the Netherlands has increased over the past

five years. The issue is highly controversial. In this con-

tribution we discuss some of the main arguments: the

nature of suffering, the voluntariness of the request and the

role of the physician. We argue that society has a duty to

care for patients who suffer from dementia and to make

their lives as good and comfortable as possible. We also

argue that it can be morally acceptable for those who do

not want to continue their life with dementia to choose to

die. The choice can be based on good reasons.

Keywords Ethics � Dementia � End of life � Euthanasia � Assisted suicide

Introduction

Hugo Claus, the famous Belgian writer, chose euthanasia

when he was afflicted with dementia. More famous and

non-famous persons decided that it was better to end their

lives than to continue to live with dementia. Dementia is a

severe symptom of a number of diseases, varying from

Alzheimer’s disease, Parkinson’s disease, Huntington’s

disease, Lewy-body dementia, frontotemporal dementia,

vascular dementia, AIDS, and OPS. Dementia is associated

with problems in memory, visual-spatial orientation, lan-

guage, attention, and problem solving. Dementia shortens

the life expectancy, depending on the underlying cause the

life expectancy after diagnosis is 3–12 years Kua et al.

(14:196–201, 2014). Although some dementia patients are

unaware of their own decline (anosognosia) [2], others fear

the natural decline that inevitably follows the diagnosis.

Choosing death over a life with inevitable and serious

decline is of all times. In the Netherlands in 2014, 81

people diagnosed with dementia opted for and were gran-

ted euthanasia, their doctors either administered them

lethal drugs on their request or helped them by handing

them the lethal drugs (see also Table 1). 1

Choosing death is a morally controversial theme, help-

ing to die even more so. And lethal help by a doctor is

taboo in most countries. The Netherlands, Belgium, and

Luxemburg have legislation allowing their doctors to assist

at the suicide or even to administer lethal drugs on request,

under specific conditions, the so-called due care criteria

(see Table 2). These countries have been accused of truly

sliding down the slippery slope by murdering their elderly

citizens, in particular those suffering from dementia. In this

contribution, we will discuss some of the central ethical

arguments in the debate.

The focus will be on the conditions for the justification

of euthanasia in dementia: the issues of voluntariness (can

a patient suffering from dementia make an autonomous

request?), of suffering (what is the nature of suffering in

dementia, can it be such that one is better off dead?), and

why doctors should or should not help these patients die.

& Inez D. de Beaufort [email protected]

Suzanne van de Vathorst

[email protected]

1 Department of Ethics and Philosophy, Erasmus MC,

PO Box 2040, 3000 CA Rotterdam, The Netherlands

2 Department of Ethics, AMC, Meibergdreef 9,

1105 AZ Amsterdam, The Netherlands

1 Assisted suicide or euthanasia is also possible in Belgium, but

Belgian statistics specific for dementia are not available.

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J Neurol (2016) 263:1463–1467

DOI 10.1007/s00415-016-8095-2

Voluntariness

For a request for euthanasia or assisted suicide to be even

considered, it is necessary that the request is made volun-

tary. Some will argue that no one choosing death over life

can do so voluntary, because if life is so bad, there are no

options left, therefore, such a choice is never made freely.

We do not concur with this view on voluntariness.

There obviously is not a plethora of choices. Some

frame it as a choice between life and death. Since we all

die, we could also frame it as a choice of die later or die

now, whereas to die later involves more suffering (Michael

Stingl). To decide that this is the moment to step out, can

be a voluntary choice.

However, it has been argued that those suffering from

dementia suffer from a disease that itself infiltrates the very

center of autonomy and voluntariness. The euthanasia

cases that were notified and were judged to comply with

the due care criteria in the Netherlands, therefore, in almost

all cases involved persons who found themselves in the

early stages of the disease. They considered themselves,

and were considered by others, to be competent and to

possess the capacity to decide about their death. They

decided on their death at a stage of their disease when they

were still able to make this autonomous choice. Having to

decide, while still competent, however, may mean that

people die earlier than even they might have preferred,

because waiting entails the risk that they will be judged to

be incompetent, and then, the opportunity will in all like-

lihood be gone. This is a moral problem that is not yet

solved.

It is, therefore, not surprising that many people invest

their hope in an advance directive. There has been a huge

debate in the Netherlands on the question whether eutha-

nasia would be justified if performed on the basis of an

advanced directive, describing in detail when and under

what conditions the person would want euthanasia. There

has been one such a case in the Netherlands that was highly

contested [3]. Though in theory, the Dutch law supports the

possibility to have the request substituted by an advanced

directive; in practice, this option is difficult to realize. A

recently published guideline by the ministry of health

illustrates this [4]. The reasons being that on the one hand,

an advance directive presupposes a very careful and detailed

statement on the wishes, whereas most advance directives

are very general, but also that doctors find it impossible and

unacceptable to perform euthanasia on a person who cannot

at that moment express his or her will, nor understand what

the physician is about to do, but who is present nonetheless.

Another often mentioned threat to the voluntariness of a

choice for death is not related to the individual competence

to decide but to the idea that there is or will be pressure

from family or from society leading to feelings of a duty to

die or to guilt about being alive. If the old, particularly the

old suffering from diseases, are covertly or overtly (think

of the Japanese minister Taro Aso [5]) given the impres-

sion that they are a burden to their families and society in

general, then their requests to die will not be voluntary but

more or less under pressure or even forced.

Feelings of guilt of feeling a burden toward society

which the elderly (not only those with dementia) may

experience depend on the respect and care society bestow

on them. We hold that societies should provide good care

facilities for patients with dementia. However, even in the

most perfect nursing home, people will experience the end

of autonomy, privacy and independence as they knew it,

and have to live by other people’s schemes and rules, and

in an environment with people they did not choose.

Suffering

Why would one consider suffering from dementia so terrible

that one would choose death? And is it about the suffering

now or about future suffering? The argument often heard is

that the suffering now is caused by the perspective of what

the disease will do to one’s personality and life, and by the

knowledge that it is a progressive disease the effects of

which will get worse, leading to behavior changes, forget-

fulness, not recognizing ones loved ones, loneliness, the

feeling of being lost in one’s own life and in the mazes of

one’s own mind. Many being in a state of advanced

dementia are devoid of dignity. The loss of dignity, the

knowledge that the lasting memory of their loved ones will

Table 1 Number of PAS/ euthanasia for patients with

dementia in the Netherlands

2014 81

2013 97

2012 42

2011 49

2010 25

2009 12

Table 2 The due care criteria in the Dutch Euthanasia Act

The criteria of due care of the Dutch euthanasia act require that the

physician be convinced that:

There is a voluntary and well-considered request from the patient

The patient is suffering unbearably without prospect of

improvement

The patient is informed about his situation and prospects

There are no reasonable alternatives to relieve suffering

An independent physician must be consulted and

Euthanasia or PAS is performed with due medical care and

attention

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be of the decomposed version of oneself, causes them to

suffer now. And that is considered to be unbearable now.

This is definitely the main reason for those who opt for

euthanasia in the early stage of the disease.

Another part of the suffering of dementia is the point-

lessness of letting nature take its course; why go on and

slowly disintegrate? Why not bring a halt to the merciless

process? From the moment, the diagnosis is given one can

be sure that it will never get better, only worse, and that

one will for certain undergo a disintegration of the self, and

that will inevitably and within a definite number of years

lead to death. In the course of this process, much is lost.

Why would one be obliged to undergo this?

There are different arguments against these views of

suffering.

It is now or never

Considering the fear of future decline as (unbearable)

suffering leads to a slippery slope. One can always imagine

a future situation that is horrible, but that is not a reason to

qualify the fear of, or anticipation of, the realization of

such a perspective in itself as unbearable suffering. People

with all kinds of diseases would then decide to choose

death immediately after being diagnosed.

Against this one can argue that usually people do not

want to die and, therefore, will wait and use the remaining

time to live. The moment of saying ‘now it has become

truly unbearable’ comes at a later stage of the disease. In

the case of dementia, the nature of the decline, namely, a

disintegration of one’s personality, may also be viewed as

dimmer (and possibly even more frightening) than the

physical decline related to other lethal diseases. And of

course, the specific problem of the dementia patient is that

a central characteristic of the disease is that one loses the

capacity to decide about one’s fate. It is now or never.

Timing is essential, and it may mean that one sacrifices

some valuable time in exchange for the certainty of not

having to experience further decline. Postponing is not an

option as it may lead to the situation, where one cannot

decide anymore and one is past postponing. Given the

complications of advance directives and the understandable

hesitations of doctors, deciding now implies the view that

the future decline is the basis of unbearable suffering.

You will be a different person: Alice does not live here anymore

There is an extensive philosophical debate on whether the

person suffering from dementia in an advanced stage is the

same person as the one at the beginning of the trajectory. If not,

because there is no real continuity between the two persons as

some argue, then person x at the time of diagnosis should not

decide for person z later [6]. The idea is that Alice does not live

in this body anymore, so we cannot allow the body of Alice—

inhabited by a new Alice, or by someone completely differ-

ent—to die. On the other hand, if one is convinced of the idea

that there is continuity in the narrative of a person’s life and that

the story is still the story of X, then this argument is not con-

vincing. We hold that the disease through its attack on the brain

turns a person not into another person but into a shadow of the

previous person. What remains is not another person, but the

ruins of the former person. One is not talking about ‘rebirth’ or

‘total make-over’ or ‘change’ symbolizing a newness filled

with new opportunities. A dementia patient is not a new

phoenixarisenfromtheashesof theformerperson.Thetragedy

of the disease is its destructive nature. Many dread this disap-

pearance of what they consider to be the essence of their indi-

viduality and personality.

Feeding the ducks: adjust to a new kind of happiness?

However, it has been argued: if there is a chance that the later

shadow seems happy and contented, enjoys life, and is taking

care of, there is the long past realization of the changes in his

personality and his preferences, so how can one accept

choosing death before that? One might rob oneself of that

contentment. We think that there is a certain danger of

romanticizing life with dementia. But of course, there are

people suffering from dementia who seem to be happy, or at

least do not seem to suffer. The problem is that for some, an

important element of the notion of suffering is precisely the

idea that one might become a shadow of oneself, a person

who enjoys feeding the ducks in the park, enjoys watching

Teletubbies as apparently Iris Murdoch did, and sings with

the nursery school nearby. The thought of becoming such a

person with the loss of faculties and values and personality is

precisely the nightmare. This is, however, a very personal

evaluation, some do not dread such a perspective at all, but

others find it horrifying and contrary to their idea of dignity. It

depends on what one deems central to one’s person and to the

story of one’s life, and in fact, it depends on who one is and

does not want to become. Both views, albeit opposing, are

personal views that deserve respect as they reflect core per-

sonal values regarding what matters.

Life is valuable in itself

The idea of the sanctity of life, that one has no right to

oppose nature and has even a duty to continue to live to the

(bitter) end, or that there is value in undergoing the process

J Neurol (2016) 263:1463–1467 1465

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of decline for yourself and/or for your significant others, is

also brought forward against euthanasia or assisted suicide.

Human beings, however, continuously challenge nature

and interfere with natural causes of events. Does it really

imply one always has to do everything to keep people alive

or stay alive? However controversial the idea of euthanasia

and physician-assisted suicide may be, and many would at

least agree that it is morally acceptable, even imperative, to

sometimes stop, withdraw or not start a medical treatment

in the best interests of the person. The term ‘natural death’

has an opaque meaning in this day and age: what is a

natural death? What is so great about a natural death

anyway? As for the argument that there is meaning or value

in undergoing the decline, isn’t that a romanticized version

of the dying process? We all need to find meaning in ter-

rible experiences and in dying. How we do that should not

be dictated by medical technology, nor by values one does

not hold, nor by other people’s religious views. People

differ. That may be an open door. The fact that these dif-

ferences are sometimes not considered can also be (part of)

the tragedy.

Why should a doctor help?

Why should a doctor help? Doctors frequently have a role

at the deathbed of their patients. It is their professional duty

to make sure the dying patient is comfortable and ade-

quately cared for. In many instances, they affect the course

of events, for instance when they decide to withdraw a

treatment, or to not start a treatment. A patient who dies

because futile treatment was stopped or not initiated dies at

that moment, because the doctor (sometimes together with

the patient) made a decision that there was nothing to be

gained from further treatment, even if the patient would die

anyway later. The doctor is responsible, if not for bringing

about the death of the patient, then for bringing death

forward. In some countries, the Netherlands, for example,

doctors are also permitted to help patients die on their

request, under certain conditions. Whether doctors should

also play a role in bringing forward the death of patients

who are in principle capable of taking lethal medication

themselves is contentious even in the Netherlands. Chabot

argues that patients capable of this should also do it

themselves, and to differentiate between this conscious act

and suicide he coined the term auto-euthanasia. This can be

brought about either by ingesting a lethal dose and/or

combination of drugs, or by abstaining from food and drink

[7]. Some patients may prefer auto-euthanasia because they

do not wish to burden their physician or because they do

not want euthanasia or assisted suicide. Some, however,

find the prospect of having to starve yourself quite horrible,

and not everybody has medication to do it oneself. There

are also other arguments why people prefer their doctors to

assist them in death: to make sure it all goes well (in the

Netherlands, the doctor who assists in death is obliged to

stay present to make sure death is calm and dignified), to

make sure the right dose of the right medication is taken,

and because assistance at suicide is illegal in the Nether-

lands if given by anyone other than a doctor, because they

can die surrounded by family and friends (who would have

to make sure they were absent so as not to be charged with

aiding and abetting). In Oregon, doctors are not obliged to

be present at the moment of ingestion, but 11 % were [8].

Depending on legal arrangements, the doctor could be

present or not.

Finally

There is no doubt to our minds that society has a duty to

care for patients who suffer from dementia and to make

their lives as good and comfortable as possible. There is

also no doubt to our minds that it can be morally accept-

able for those who do not want to continue their life with

dementia to choose to die. The choice can be based on

good reasons that are to a great extent very personal and

intricately linked to one’s view on life and on oneself.

There are different ways to bring about death. Some find

themselves in a situation where they can refuse (further)

treatment, others do not have that option, and for them,

‘auto-euthanasia’ or euthanasia or assisted suicide is the

option they have. All options can be turned into a slippery

slope scenario. We realize that for some of those who

oppose euthanasia and physician-assisted suicide for

patients with dementia, and the Dutch practice already is

the proof of a slippery slope. Given the number of eutha-

nasia cases compared with the number of patients suffering

from dementia, we doubt it is. We all, however, have to

consider the question: do people who do not want to

experience the further decline have to hope for a life

threatening infection or will other options be made avail-

able, and how can we then best protect people in such a

way that the choice to die is theirs and theirs only?

Compliance with ethical standards

Conflicts of interest The authors declare that they have no conflict of interest

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