DO I LOSE THE RIGHT-TO-DIE
WHEN I LOSE
CONSCIOUSNESS?
SYNOPSIS:
One hundred years from now,
the right-to-die will be firmly established in all societies.
And this right-to-die will not disappear
when the individual passes over from being a full person
—with
all capacities to make medical decisions—
to some lower level of decision-making ability.
At present, mental capacity is one of the dilemmas of the right-to-die:
One common safeguard requires that the person choosing death
remain fully capable of making the life-ending decision
up to the very last moment
of life.
As we live longer and depend more
on life-support machinery at the end of life,
most of us will have serious
limitations
to our thinking powers at the
end of our lives.
But no matter how much mental decline we might suffer,
we should never lose the
right-to-die.
OUTLINE:
1. HOW "YOU MUST BE CONSCIOUS AND CAPABLE"
CAUSES SOME
PREMATURE DEATHS.
2. THE REASONING BEHIND THIS SAFEGUARD.
3. THIS DEATH SHOULD BE CALLED A MERCIFUL DEATH
IF THE PROXIES
ARE FOLLOWING THE PATIENT'S WISHES.
4. WHEN THE WISHES OF THE DYING PERSON ARE CLEAR,
SAFEGUARDS
SHOULD NOT PREVENT CHOOSING
DEATH.
5. A PROBLEM IN THE NETHERLANDS:
DEATH "WITHOUT
EXPLICIT REQUEST".
6. THE UNITED STATES HAS A STRONG ROLE FOR
PROXIES.
7. THUS, I DO
NOT LOSE MY RIGHT-TO-DIE
WHEN I LOSE
CONSCIOUSNESS.
RESULT:
Some
forms of the right-to-die require the individual choosing death
to be conscious and capable up to the last moment of life.
But it should be possible to affirm our right-to-die
in such ways that our plans for the end of life
will not be thwarted by any decline in our mental capacities.
DO I LOSE THE RIGHT-TO-DIE
WHEN I LOSE
CONSCIOUSNESS?
by
James Leonard Park
Law and ethics now recognize the right of competent
persons
to choose the time and means of their own deaths.
We might choose death by
increasing pain-medication,
by inducing terminal coma,
by withdrawing life-supports,
or by giving up water and
all other fluids.
All of these are recognized legal ways of ending human life.
Another on-line essay discusses these four ways in
detail:
"Four
Medical
Methods of Managing Dying".
Choosing death should not be done easily and
quickly.
The more safeguard-procedures
we use,
the
more fully we show that it was a wise voluntary death
rather than a foolish irrational suicide.
Here is another
related essay,
which explores some useful safeguards for separating
voluntary death from irrational suicide:
Fifteen
Safeguards for Life-Ending Decisions.
And here is an essay specifically separating
voluntary death from irrational suicide:
Will
this
Death be an "Irrational Suicide" or a "Voluntary Death"?
One common safeguard suggested by
advocates of the right-to-die
is to require the patient to be awake and capable of making
decisions
at the final moment of life.
Those who advocate this must-be-conscious
safeguard
believe this is the best way to make certain
that the decision for death was free and autonomous.
For example, some right-to-die laws require the
patient
physically
to take the pills
or push the button
that will cause death.
Under such provisions, the person who is
no longer capable of making a life-ending decision
or of taking the necessary action loses the
right-to-die.
Is this safeguard wise and necessary?
1. HOW "YOU MUST BE CONSCIOUS
AND
CAPABLE"
CAUSES
SOME PREMATURE DEATHS.
All of us know that as we approach death from
natural causes,
we often lose our abilities to make wise decisions
and to carry them forward—long
before we actually die.
If we happen to be victims of Alzheimer's disease,
we can lose our capacities to make good decisions
literally years before we will die of natural causes.
Does it seem wise public policy
to deprive Alzheimer's victims of the
right-to-die
merely because they have this particular brain disease
rather than cancer,
for example?
Some advocates of the right-to-die chose death prematurely
precisely because they
feared losing the capacity to choose
death.
They knew they were on the downward path.
But how many meaningful days of life might still be possible?
In order not to lose the
right-to-die, they decided to take the pills now
rather than waiting until some time when it might be too late
to make the decision
and physically to do the
action themselves.
The obvious way to prevent such premature deaths
is to allow proxies
for the patient to carry forward the plan if and when
the patient can
no longer express an opinion or take a
life-ending action.
A well-constructed Advance Directive for Medical Care
should be sufficient to prove that the author wanted the right-to-die
when certain conditions of decline had occurred
—even
if the patient was not conscious or capable at the
last moment.
This is what I have said in my
own Advance
Directive:
If and when I can no longer make my own life-ending decisions,
my proxies are fully authorized to make those choices for me.
See
especially Question 6 in my Advance Directive linked just above.
They will follow my medical
ethics in my Advance Directive.
And when I am no longer
capable of choosing,
they will have the same
powers I had
while I was still fully able to conduct my own life.
There might be some problems with such a
right-to-die provision.
But these can be resolved before the drawer of the Advance Directive
becomes unable to participate in further discussions
concerning just when and how his or her life should come to an end.
When an Advance Directive or similar document has
been created,
when there is no doubt that the patient made these wishes known
at a time when he or she was still fully capable of making decisions,
then if and when the patient loses consciousness,
the right-to-die is not lost.
The right to made life-ending decisions merely shifts
to the duly-authorized proxies for the patient.
When I lose consciousness (either temporarily or permanently),
I do not lose my right-to-die
if I have fully and clearly
claimed this right in my Advance Directive.
It is quite ironic that some parts of the
right-to-die movement
have insisted on this
safeguard:
The you-must-be-conscious safeguard
forces some people to rush
into premature death
rather than risk losing the
right-to-die at a later time
when they lose the ability to make their own medical
decisions,
including any decisions that will shorten the process of dying.
Advocates of the right-to-die
should not force patients to choose a premature death
because those patients fear losing the right-to-die
if they become incompetent or unconscious
before they exercise their right to choose a voluntary death.
2. THE REASONING BEHIND THIS SAFEGUARD.
Some advocates of the right-to-die take this
safeguard
—that
you must be conscious
and capable to choose
death—
as if it were a regulation handed down by God.
But actually this safeguard was created by people who were worried
that some individuals might be put
to death by others
who did not have their best interests at heart.
Thus, in order to protect the autonomy of the
individual,
they require that the choice to end one's life
be affirmed several times before it can actually take place.
This wise safeguard prevents many irrational suicides
by people who have only a temporary
urge to kill themselves,
perhaps based on a misapprehension of some medical facts
or because they have a distorted vision of their future prospects.
However, careful safeguards could protect
against irrational suicide
and against people being manipulated
or coerced into 'choosing' death
by asking a
number of
independent people to review
the
decision.
If the facts lead several people to affirm death as the best choice,
then the chosen death should be carried forward
without regard to the mental
status of the patient at the end of life.
Several such safeguards are presented in another
chapter:
"Fifteen
Safeguards for Life-Ending Decisions".
Such
safeguards make sure that the life-ending decision is
wise
without requiring the patient to reaffirm the choice at the last
moment.
When the patient becomes unconscious
or otherwise incapable of making any life-ending decisions,
then the proxies
should follow the medical ethics of the
patient
and make the life-ending decisions that the patient would have made
if the dying person were still fully able to carry forward the plans
explained in his or her Advance Directive for Medical Care.
3. THIS DEATH SHOULD BE CALLED A "MERCIFUL
DEATH"
IF
THE PROXIES ARE FOLLOWING THE PATIENT'S WISHES.
Sometimes well-meaning relatives decide on their own
to end the life of someone they love who has 'suffered enough'.
This is commonly called a "mercy-killing".
And it should remain a crime
under any revision of our laws prohibiting causing premature death.
In brief, a mercy-killing is harmful,
irrational, capricious, &
regrettable.
However, in contrast to mercy-killings, we need a
new concept,
which might be called "merciful death".
A merciful death is carried out by someone other than the patient
because that patient has already lost the power to end his or her
life.
But if the patient were still able to choose death,
it would be called a voluntary death, not an irrational
suicide.
In short, a merciful death is helpful,
rational, well-planned, &
admirable.
This
distinction is worked out in full detail
in another chapter:
Will
this
Death be a "Mercy-Killing" or a "Merciful Death"?
.
When all the proper and relevant safeguards are
fulfilled,
then the proxies can carry forward the patient's plans
for achieving a timely death—not
too soon and not too late.
If they follow the pathway towards death chosen
by the patient,
then no harm has been done and no crime has been committed.
Helping someone you love to choose a timely death
can be an ultimate act of love.
As this new
concept of merciful death comes into
fuller use,
doctors will know when to write "merciful death" on the
death-certificate.
And the family will admire the patient's foresight in planning a good
death
rather than merely waiting for natural death to occur.
The patient has specified in advance the conditions under which
death now is to be preferred over death later.
If the dying person were still conscious and capable,
he or she would take the necessary actions to achieve a voluntary death.
I apply this to my own death:
If I lose consciousness before I die
and if I will never be able to make a life-ending decision,
then my proxies shall consult my Advance Directive
to see if the conditions for choosing death have been fulfilled.
If so, they shall carry
forward my plans for death
—just
as I would have carried them forward myself if I were still
able.
4. WHEN THE WISHES OF THE DYING PERSON ARE
CLEAR,
SAFEGUARDS SHOULD NOT PREVENT CHOOSING
DEATH.
Sometimes advocates of the right-to-die do not
realize
that the requirement that the dying person must be conscious and
capable
is really just one of
several
safeguards to prevent premature death.
And once they acknowledge the reasons behind this safeguard,
they will rationally be able to
make exceptions
when the wishes of the patient are crystal clear.
There might be better ways to honor patient autonomy
than to insist on full decision-making capacity at the last moment
of life.
For example, a comprehensive Advance Directive
will specify the conditions under which the patient would choose death.
See Question
17:
Under what conditions would
you request death?
When the patient has lost the personal
power to achieve death,
then the proxies are legally
empowered to act for their patient.
The right-to-die does not
disappear with consciousness.
This is parallel to putting one's plans for assets
into writing.
An estate will or trust
does
not become invalid
when the person who created that document becomes unconscious
or otherwise loses the capacity to make further financial decisions.
On the contrary, the reason for putting an estate plan into
writing
is to make sure that the wishes of the drawer are fulfilled
after
death.
And if there is a long
period of incapacity before death,
the executor or the trustee still has the power
to carry forward the plans as specified in writing.
Sometimes this is done by establishing a guardian or conservator,
who will handle the financial affairs of someone
who has lost the ability to make wise choices about money.
A good Advance Directive gives similar
powers to the proxies
so that they can make all necessary medical decisions for the
patient
during any periods of time the patient cannot make medical choices.
In the case of Alzheimer's disease,
the period of proxies acting for the patient can be many years.
And if explicitly authorized in the Advance Directive,
the proxies can make life-ending
decisions for
their
patient.
5. A PROBLEM IN THE NETHERLANDS:
DEATH "WITHOUT
EXPLICIT REQUEST".
Holland is one of the places on the planet Earth
where voluntary death has now become a legal and common practice.
Thousands of Hollanders take advantage of this right-to-die every
year.
On average, they choose to die about one month
before they would have died of natural causes.
Thus these citizens
of the Netherlands
might be said to be members of The
One-Month-Less Club.
One of the safeguards in the right-to-die law of the
Netherlands
is that the patient must be
conscious and capable to the last moment.
The patient must be willing and able to give informed consent
for the doctor to give the death pill or the lethal injection.
But investigations have discovered
that a certain percentage of Dutch patients
have been put to death "without explicit request".
This means that the doctor helped them to die
even tho they did not
or could not consent
at the very last moment.
One report found 1,000 such cases.
However, what is not always reported along with this shocking number
is that most of these patients had previously requested
assistance in dying.
And they had just waited too
long to make the final request.
Some of them were unconscious
when the doctor gave them an injection to end their lives.
This was a violation of Dutch law,
but no doctors have been prosecuted for this breach of law
—probably
because everyone can see that the
right-to-die should not
end
when the patient loses the power to participate in the life-ending
decision.
Dutch law gives no explicit role for proxies to
decide for their patients.
So the doctor must
choose death on his or her own
authority.
If such a case ever were to come to court,
then the doctor would just bring forth all the documentary evidence
and the recollections of all the people who were present
to prove that death at this time was what the patient would have
chosen.
Dutch law should be changed so that this
common-sense extension
of the right-to-die is made explicit in the law and safeguards.
From the perspective of how American medicine is practiced,
it would be reasonable to include
proxy-decision-making:
When the patient can no longer make medical decisions,
then that power passes to another individual or group of persons
who were selected by the patient
while the patient was still able to make all medical decisions.
6. THE UNITED STATES HAS A
STRONG
ROLE FOR PROXIES.
It will not be such a radical revision for the
United States
to extend the power of proxies to life-and-death decisions.
Most states already empower proxies to make medical decisions
when the patient no longer has the ability to
make wise medical choices.
This proxy-power is usually found in laws about
Advance Directives.
But some states define durable
power of
attorney for health care.
This simply means that the named proxy or proxies have the power
to made medical decisions for the patient who appointed them
when the patient becomes incompetent or unable to make medical choices.
Some states have limited the power of proxies in
particular areas
—such as the withdrawal of food and water.
These states sometimes say that withdrawing such means of sustenance
cannot be chosen unless the patient has specifically given permission
for the proxies to withdraw food and water
as a means of bringing the patient's life to an end.
Even in states whose laws do not address the question of food and water,
it would be wise to include
explicit permission in one's Advance Directive.
Then there will be no uncertainty in anyone's mind
concerning whether or not this power was given to the proxies.
While we are still competent and capable ourselves,
we always do have the authority to give up eating and drinking,
with the clear recognition that this will bring our lives to
an end.
And if we live in one of the states with strong proxy laws
and if we have appointed effective proxies,
then our end-of-life decisions will be carried forward
as we have specified in our Advance Directives for Medical Care.
The following is what we mean by "strong proxy laws":
The state law authorizes the appointment of a person or persons
who will have as much power
and authority to decide for the patient
as the patient has while fully able to make
medical decisions.
And when we write our Advance Directives,
we should specify that we do intend to give
all these decision-making powers to our named proxies.
We might include an expression such as the following:
"I hereby empower and authorize my proxies
to
exercise all powers to make medical decisions for me
if
and when I am no longer able to direct my medical care
or
when I am unable to express my medical choices.
If
I could make any specific medical decision
while
I was still fully competent and
capable,
then
that full decision-making-power will rest with my proxies
if
and when I cannot make my own medical decisions.
This
authority explicitly extends
to
the right to make all life-ending
decisions for me,
including
the withdrawal or withholding of food and water."
In addition to making this explicit transfer of
authority,
we should appoint some individual or group of individuals
who will assert this right
even possibly against medical advice.
Because we ourselves always have the right to refuse any treatment,
so our proxies will also have the full right to refuse any medical care,
even if that refusal will inevitably lead to our deaths.
When we can no longer make our own medical decisions,
our proxies will acquire our decision-making power
and make any end-of-life decisions for us
—if
we have explicitly given them this power in our Advance Directives
and if our state or country allows proxies to have this much power.
7. THUS, I DO NOT LOSE MY RIGHT-TO-DIE
WHEN
I LOSE CONSCIOUSNESS.
If I have carefully affirmed my
right-to-die in
my Advance Directive
and if I have appointed proxies who will carry my wishes forward,
then I do not lose the
right-to-die
when I can no longer give informed consent.
This will eliminate any temptation to kill myself
prematurely
because I worry that I might lose my right-to-die at some later time.
I can allow myself to survive for more weeks and months
because I have the assurance that a wise life-ending decision
can still be taken by my proxies when the appropriate time comes.
Created
November 9, 2006; revised
11-14-2006; 1-24-2008; 2-6-2009; 5-30-2009;
2-11-2010; 3-6-2011;
4-5-2011; 2-2-2012; 2-27-2012; 3-17-2012; 7-8-2012; 8-26-2012;
3-30-2013; 6-12-2013; 9-23-2013; 8-1-2014; 12-23-2014;
3-17-2015;
7-10-2015; 5-25-2016; 11-16-2017; 12-23-2019; 2-27-2020;
AUTHOR:
James Park advocates of the right-to-die with
careful safeguards.
His own Advance Directive gives his Medical Care Decisions Committee
explicit powers to make all the medical decisions
he himself could make while he is still capable.
His proxies' powers come into effect
whenever he loses the ability to make wise medical decisions.
All of this is explained in great detail in his own
Advance
Directive
for Medical Care.
Much more information about James Park will be found
on his
website:
James
Leonard Park—Free
Library