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Whipps Cross

University Hospital

Advance
Directives in
Dementia:
An argument
Iraklis Pantelidakis
9-03-2015
La vie, Pablo Picasso,1903

Stages of Dementia

Predement
ia

Mild
dement
ia

Severe
Dement
ia

End
stage
dement
ia

Clinical Dementia Rating


C P Hughes, L Berg, W L Danziger, L A Coben and R L Martin.
A new clinical scale for the staging of dementia.
The British Journal of Psychiatry (1982) 140: 566-572.

Unified sense of self (for practical reasons)

Self
Agent:
Active partinitiating actions

Subject:
Passive partemotions and
experiences
Korsgaard, Christine. 1989. Personal identity and the unity of agency:
A Kantian response to Parfit. Philosophy and Public Affairs 18, no. 2: 101-132.

Moral Psychology of dementia


Stage 1

Stage 2

Stage 3

Pre-dementia

Mild Dementia

Severe Dementia

Stage 4
End stage
dementia
-Minimal remaining
consciousness

- Sense of self fully


unified both
atomistically and
relationally

-Sense of self
partially
fragmented both
atomistically and
relationally

-Sense of self
completely
fragmented
atomistically and
relationally

- A functioning
agent

-Episodically
compromised
agency

- Permanently
compromised
agency

-Not functioning
agent

-A consciously
aware subject of
experience

-Consciously aware
subject of
experience

-Consciously aware
subject of
experience

-Not a consciously
aware subject of
experience

- - No remaining
sense of self

*This table is meant as a moral psychology analogue of Bergs Clinical Dementia


Rating Scale, adapted from Harvey (2006) :Martin Harvey, Advance Directives and the
Severely Demented, Journal of Medicine and Philosophy, 31:4764, 2006

Bes
t
inte
rest
s
(pri
nci
ple
of
Surrogate
ben
decision-making
efic
enc
Advancee)
directives

Substitute decision-making

(precedent autonomy)
Informed Consent
The principle of autonomy

Buchanan and Brock (1990) Deciding for Others: The Ethics of Surrogate Decision Making
Cambridge University Pres

The clinical scenario

Margo is an elderlypleasantly demented lady


(let us say stage 3
dementia)
Lives in a care home
She enjoys her meals and
says she reads mysteries.
She loves and makes jokes
with her carers.
What
happens
if
she
suffers from severe
pneumonia and has issued
advance
directives
for
withholding life sustaining
treatment when she was
competent?

Ronald Dworkin, Lifes Dominion, 1993

Bioethical question
In

cases like Margos who is a pleasantly


demented person, should her formerly
advance directive, that suggests for
instance, omitting life-saving medical
treatment be respected or do we have
reasons regarding her current welfare
state, to reevaluate the moral force of
such a directive?

The conflict
Critical
interests of
the agencys
precedent
state

Experiential
interests of
the current
state

Current
interest
Two rival philosophical
camps
view
(Dresser)

Extension View
(Dworkin)
The dominant tendency,
both
in
recent
legal
doctrine
and
in
the
bioethics literature, has
been to view the rights of
incompetent
individuals
as an extension of the
rights
of
competent
individual
Buchanan and Brock

Professor Rebecca Dresser


argues
that
advance
directives or known prior
preferences of patients
with Alzheimer's should
not always be followed
because the interests of
these patients alternate
when
they
become
incompetent.

The remaining
autonomy of the
current state
She gives weight to the
capacity to value as the
core feature of autonomy
and she propagates the
fact
that
certain
dementia patients hold
this capacity, at least in
an
elementary
form,
through
the
severe
stages of the disease

Agnieszka Jaworska, Respecting the Margins of Agency:


Alzheimer's Patients and the Capacity to Value Philosophy &

The integrity
view of
autonomy
The

integrity

autonomy

holds

view
a

of
basic

premise; that persons commit


themselves in critical projects
and express a set of values
that they consider necessary
in order to live a good life as a
whole.

The integrity view of autonomy:

1.
2.

Is a value based model of autonomy


which however disregards the current
demented state.
Is based in the philosophical principles
of Dworkins ethical individualism
which are:
The principle of equal value (equality)
The principle of special responsibility
(liberty)

The principle of equal value


It

insists that it is equally important,


from an objective point of view, that all
human lives flourish Sovereign Virtue
Actually the principle undermines the
fact that nobody wants his life to be
wasted because there is a normative
appeal, equally valid for everybody, that
you should want to make something out
of your life

The principle of special responsibility

it

declares that the connection


between you and your life is
nevertheless a special one

it insists that so far as choices are to be


made about the kind of life a person
lives, within whatever range of choice is
permitted by resource and culture, he is
responsible for making those choices
himself
Sovereign Virtue

Balance

Subjective
value of
human life

Objective value
of human life

Rational and reasonable requirements

Ronald Dworkin has signed this document that


clearly articulates: a state may not deny the
liberty claimed by the patient-plaintiffs in these
cases without providing them an opportunity to
demonstrate, in whatever way the state
reasonably think wise and necessary, that the
conviction they expressed for an early death is
competent, rational, informed, stable, and
uncoercedthere is a constitutionally protected
right in principle.

The New York Review of Books.Assisted Suicide: The


Philosophers Brief MARCH 27, 1997
Ronald Dworkin,Thomas Nagel,Robert Nozick,John Rawls, and
Judith Jarvis Thomson, et al.

Intuitive truths:

Some minimal ethical value of the current


conscious state of the demented exists and it this
truth that binds us to at least medical acts of
palliation as opposed to cruelty and suffering.

Kuhse, H. (1999).Some reflections on the problems of advance directives,


personhood and personal identity. Kennedy Institute of Ethics Journal, 9, 347

.
There is always some connection with the past
self that is critical to the current state and provides
hints of the value load of the person and this is
obvious even in the posthumous state.
364

Robert Olick; Taking Advance Directives Seriously: prospective autonomy and


decisions near the end of life. Georgetown University Press (2001)

We intuitively dislike a pre-emptive suicide approach

The argument
We

need a value based account of


autonomy that respects the integrity
view of autonomy and the persons
time-independent critical interests while
it will not fail to
unravel the most
current features of the personal value of
life that survive until the most advanced
stages of dementia possible.

The emerging new conceptual framework of


dementia
1. There is a clinicopathologic discrepancy which
means that there is no tight correlation between
the clinical and pathological findings that is why
newly proposed diagnostic criteria are divided into
AD-Pathophysiological criteria and AD-Clinical
criteria.
2. The AD is a continuum, a spectrum with no
clearly cut margins between pre-dementia and
the various stages of dementia.

McKhann GM, Knopman DS, Chertkow H, Hyman BT, Jack CR Jr, Kawas CH,
et al. The diagnosis of dementia due to Alzheimer's disease:
recommendations from the National Institute on AgingAlzheimer's
Association workgroups on diagnostic guidelines for Alzheimer's disease.
Alzheimers Dement. 2011; 7:2639.

Biomarkers of AD
Biomarkers

are biological indices of a


disease state for example a protein
measured in the blood, or a genetic
signature of a cell or a characteristic
finding in imaging techniques. These
recent
technological
advances
in
biomedical sciences promise to provide
us with powerful predictive tools that
could be used in public health programs
for massive screening, for example.

Proposed revised research criteria for cognitive disorders


We have moved forward to characterize

even
asymptomatic
patients
with
positive biomarkers!
In the minimally symptomatic MCI (Mild
Cognitive Impairment) biomarkers are
used in order to individualize the future
risk to Alzheimers disease.
In dementia patients biomarkers are
used mainly to unravel and identify if
AD is the cause of the cognitive
disorder.

J Intern Med 2014; 275: 214228.

The converters

The new model of autonomy

Some patients with MCI are at risk of


dementia and keep their agential capacities
although
they
have
some
cognitive
impairment.
This cognitive risk can be individualized and
this makes their autonomy at risk!
Simultaneously it gives time until dementia
rises.
This
precious time will help us unravel
slowly and cautiously the value load of the
person and their family (in a structured way).

The special responsibility swift

The special responsibility thesis transforms in


both a special responsibility of the person to
acknowledge the risk and communicate her/his
values to the social environment and
The social environment (medical, legal and
governmental resources) has the responsibility
to protect the individual vulnerability and
facilitate advance care decisions in a timely
manner.
If time is our ally then we can create a
continuum when personal integrity can run
though the current demented state.

William Utermohlens self-portraits reveal his


descent into dememtia over the span of nearly four
decades. Left, a self-portrait from 1967 to right 1996

1996-1997

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