FOR ALZHEIMER'S PATIENTS
There are about 5 million
Alzheimer's patients in the USA.
They are at different stages of decline.
This brain disease often causes several years of dementia at the end of
In the past, the standard medical practice in the
United States has been
to keep Alzheimer's patients
as long as technically possible.
Such standard medical treatment has often included a feeding-tube
because patients with advance dementia forget how to eat
and it becomes too difficult and dangerous to feed them by hand.
This population of patients with various degrees of
can only increase in
more people enter the age when
Alzheimer's is more likely.
After age 85, about half
of us will have some level of Alzheimer's.
As a society, we have not boldly faced
created by advances in medical technology.
Because people with advanced dementia can be kept alive for years,
we just assumed that they should
be kept alive.
Our nursing homes have literally millions of patients
disease or other forms of mental decline.
They need constant care because they can no longer take care of
As they decline into deeper mental disability,
more care and support are needed from the staff of the nursing
Consider the costs in human efforts and public and private money.
1. WHO SHOULD MAKE THE LIFE-ENDING DECISIONS?
WHEN SHOULD DECISION-MAKING POWER SHIFT TO THE PROXIES?
THE MOST MEANINGFUL SAFEGUARDS
FOR MAKING LIFE-ENDING DECISIONS FOR
4. WHAT ARE THE BEST METHODS FOR DRAWING LIFE TO A CLOSE?
FOR ALZHEIMER'S PATIENTS
James Leonard Park
1. WHO SHOULD MAKE THE LIFE-ENDING DECISIONS?
Terminal care decisions for Alzheimer's patients
are made especially difficult by this brain disease itself.
Once a patient has this progressive brain disease,
all future decisions by that patient will
Sometimes the patient becomes
Some thought-processes are still taking place,
but the conclusions need to be monitored by other adults
whose thinking abilities are beyond doubt.
In most cases, there is a long period of several
during which the patient is able to make some routine decisions,
such as what clothes to wear that day and what to watch on
But as the disease progresses,
even such simple decisions must be taken over by others.
The highest and most complex mental processes are
This might be noticed in the patient's financial affairs:
Has the patient made foolish decisions concerning money?
Also, does the patient have enough power of
to understand medical
information and to reach
Eventually others take responsibility for making
And, of course, the most comprehensive medical
decision will be
making those choices that
will lead to the death of the patient.
Because decisions that result in death are so important and complicated,
a patient with Alzheimer's cannot be trusted to reach a wise conclusion.
else must make
medical decisions for this patient.
The most common way this shift of decision-maker
is for the doctor to turn to a close relative
when a medical procedure must be approved.
Without any formal legal process, the next of kin
becomes the actual person to decide for this
The doctor hands the consent-form to the spouse instead of to the
A better process would be to establish a formal proxy
for the patient who can no longer make wise medical decisions.
This can be done with a special document appointing the proxy.
Or it can be included in an Advance Directive for Medical Care.
One of the most important elements of any Advance Directive
is naming a proxy who will make decisions for this patient
when and if the patient can no longer make meaningful medical
A formal proxy could also be a committee of
relatives and friends,
such as a Medical
Care Decisions Committee,
which will be legally empowered to make
at least the most important medical decisions for this patient.
Routine and non-controversial authorizations
could be handled by the chairperson of the MCDC.
During those months or years in which the patient
is still able to express meaningful opinions about medical care,
then the proxies should
consult with the patient as much as possible.
Such consultation will be good both for the patient and the proxies.
And important decisions can be postponed
until a time when the patient is best able to make an informed
But when the patient has questionable mental
then the legal, official decision-making power
should actually rest with the duly-authorized proxies.
They might be able to say with some confidence
that they are making the same
that the patient would have made
when he or she was still able to make wise medical choices.
This situation of declining mental capacities
should have been explicitly addressed in the written Advance Directive.
When the patient was still able to make wise medical decisions,
that person wrote
he or she would choose under various conditions.
Such plans for the end of life cannot cover every
but the Advance Directive can set forth the medical ethics of the
so that the duly-authorized proxies will be able to choose the best
when the patient can no longer make meaningful decisions.
2. WHEN SHOULD
DECISION-MAKING POWER SHIFT TO THE PROXIES?
The proxies themselves might have daily
contact with the patient,
which will allow them to evaluate for themselves
the degree of mental decline in their friend or relative.
And medical professionals might evaluate
the mental powers of the patient.
Such formal and informal observations might lead to the same
This patient can no longer
make reasonable medical
The proxies and the patient should
cooperate as fully as possible
when making future medical decisions for this patient.
But the legal power to decide has now shifted to the proxies.
It would be best to record this official shift in
the medical record.
The proxies and the doctors could create a document noting the date
when the decision-making power shifted from the patient to the proxies.
If the patient ever recovers all of his or her
former mental powers,
then another document can be created,
stating the date and time when the power to make medical decisions
was formally and officially returned to the patient himself or
Here are links to
questions that proxies can ask,
which will probe the changes they have observed in the patient
in the following areas: consciousness, memory, language, & autonomy:
Degrees of Mental Decline.
3. THE MOST MEANINGFUL
FOR MAKING LIFE-ENDING DECISIONS FOR AN
The patient, the proxies, & the doctors
are the most important people to make end-of-life choices for the
But some additional people might be consulted
to see if they agree with any decision to draw this patient's life to a
Here is a list of the most relevant
safeguards for this situation.
Each safeguard is explained briefly, but a more complete discussion
of how to apply that safeguard is linked
from its name.
These safeguards are listed in the order of importance,
beginning with the most relevant and powerful:
FOR MEDICAL CARE
When the patient was still unquestionably able to
make medical decisions,
that person created a written and signed document
explaining how he or she wanted to be treated at the
end of life.
If this was a comprehensive Advance Directive,
it includes provisions that explicitly address the situation of mental
The patient has written (while still able to make meaningful decisions)
just what he or she wants
and does not want
when certain medical conditions arise.
What did the patient write about possible mental decline?
To see one example of
Park's Advance Directive:
Scroll down to Answer 6:
"If I Get Alzheimer's
or a Similar Condition that
Limits My Mental Capacities" 211
DEATH FROM THE
When the patient was already beginning the decline
he or she might have created an
additional written statement
requesting death when his or her health has deteriorated
to the stage described in this document.
This request for death under specified circumstances
should be considered valid if the patient was still able to decide.
The witnesses to any such requests for death will state
that they believed the patient was still able to make
when this more explicit statement requesting death was created.
This written, signed, & witnessed document
becomes a permanent part of the medical record.
Copies are kept by others involved, especially the proxies.
CONSULTANT EVALUATES THE PATIENT'S ABILITY TO MAKE MEDICAL DECISIONS
The mental capacities of the patient should be
An official statement can be created by a psychologist or
If the conclusion is that the
patient can no longer make medical decisions,
then the proxies must
take over the
OF CONDITION AND PROGNOSIS
Even tho it might be implicit in all of the current
the primary-care physician should issue a formal,
summarizing the present condition of the patient and the future
Sometimes people need to see such professional opinions in writing
before they will take them seriously.
And sometimes everyone has been operating on some implicit belief.
Putting the known medical facts and professional opinions into
will make certain that everyone concerned knows the full situation.
PHYSICIAN REVIEWS THE CONDITION AND PROGNOSIS
And especially when the proxies are making
they should get a second professional opinion about the patient's
and likely future course under various treatment options.
Sometimes, even more professional
medical opinions might be relevant.
Has a specialist in the patient's specific condition been consulted?
For example, has the patient been evaluated by an Alzheimer's
All statements from doctors should be in terms
laypersons can understand.
OF TERMINAL ILLNESS OR INCURABLE CONDITION
Sometimes doctors will create a separate document
stating their judgment
that this patient has an illness
that is likely to result in death within a stated period of time.
It might be useful to have
a summary of the medical treatments
already tried as a means of controlling the symptoms of mental decline.
Were these treatments effective for a specific period of time?
Has the patient continued to deteriorate despite the best palliative
The medical professionals involved in any such palliative
might also be asked to write their observations and recommendations.
FROM THE PROXIES
Since the patient can no longer request death for
himself or herself,
the proxies are empowered to make any medical decisions
that could have been taken by the patient
while the patient was still mentally able to make such requests.
Let the official authorization for life-ending decisions be put into
signed, dated, & witnessed.
In creating their own written request for death,
the proxies take responsibility for the life-ending
decision they are making.
HOSPITAL OR HOSPICE
When the patient is receiving care from health-care
a number of additional people know about the end-of-life situation.
And such observers (even including volunteers for a hospice program)
should express their doubts if they do not believe
that death at this time would be the wisest course of action.
Any and all such questions should be resolved
before the proxies make their final decision for death.
HOSPITAL OR HOSPICE STAFF MEMBERS
And the case for choosing death for this
will be strengthened by any written statements from health-care staff
who help to care for the patient who is in some process of mental
APPROVES OR QUESTIONS CHOOSING DEATH
If invited by the patient and/or the proxies, a
professional religious leader
might be asked to review the end-of-life plans now being formulated.
This minister, priest, rabbi, etc. would not have any veto power
over the end-of-life decisions being make by the duly-authorized
But their religious opinions might affect the plans for death.
And it will be reassuring to more distant skeptics
if they are informed
that the life-ending decision was approved by a member of the
ETHICS COMMITTEE REVIEWS THE PLANS FOR DEATH
Somewhere in planning for death it might be
to seek the professional opinion of an ethics committee or consultant.
Such professionals face end-of-life situations on a regular basis.
And while they should actually visit the patient and talk with the
they are not emotionally involved with the patient.
They can make more objective recommendations,
based only on the known medical facts and professional opinions
and the recorded wishes of the patient and the proxies.
If an ethics committee or
then most people who know less about the situation should not object
based on their own preconceptions or
IF INVITED BY
THE PATIENT AND/OR THE PROXIES
Have doubts been raised about the quality of the
Might the patient be suffering discrimination because of
Perhaps a representative of that
might be asked to review the complete death-planning record.
Such an advocate would have no veto power.
But if the representative of an identity-group finds real problems,
such issues can be brought to the attention of the
And if no
discrimination is found by such an
then all critics who know less about the situation should remain silent.
The possibility of inferior care has been examined.
And the advocate agrees that the medical decisions are being properly
PROSECUTOR BEFORE THE DEATH TAKES PLACE
The public prosecutor would rarely become involved.
Only when there is valid suspicion that a crime might be committed
under the color of withdrawing life-supports and discontinuing feeding
should the local prosecutor be informed about the end-of-life choices.
If the prosecutor might have reason to open a case-file after the death,
then such doubts can be resolved before the death takes place.
The public prosecutor could grant immunity to everyone involved
if the plans for death proceed as explained in the
PERIODS FOR REFLECTION
Probably there will be no need for any additional
because of the lengthy deliberations already
But if anyone legitimately involved wants to review the facts and
some delay in the proposed date of death should be allowed.
There might be other reasons to propose a later
date of death.
Perhaps some distant family members want to be present at the end.
And when the approximate date of death is known
the funeral or memorial service can be scheduled accordingly.
Each of the above selected safeguards has a letter
of the alphabet.
This is because they were chosen from a larger set
of recommended safeguards for life-ending decisions.
The safeguards above are the most relevant and powerful
for any situation in which the patient has already lost mental capacity.
But if additional safeguards are wanted, here is the complete list:
4. WHAT ARE THE BEST METHODS FOR DRAWING
LIFE TO A CLOSE??
The proxies have a variety of measures they can
to ensure that their patient has a meaningful, peaceful, &
If any organs are going to be donated after death,
then such evaluations should take place before the process of dying
Usually all life-support systems will simply be
This includes all machines attached to the patient.
Food and water provided by any means will be discontinued.
All medications (except those needed for comfort) will be withdrawn.
Some forms of sedation might be relevant,
especially if the patient is suffering pain for any reason.
And terminal sedation
might be appropriate if it seems best
to keep the
patient completely unconscious until death
In Alzheimer's patients who have no other major
the immediate cause of death will probably be recorded as
But the complete explanation should always include
situation that led to this life-ending decision:
The patient was suffering predictable decline because of
or some other cause of dementia or mental deterioration.
A few other medical facts might be relevant for the
If the safeguards introduced above have been
then the specific last steps towards death will not be as important
as the process of making a set of wise, end-of-life medical choices.
When properly decided, a timely death might be the
best end-of-life choice
for any of us who might be struck by Alzheimer's disease.
Often the choice is not between life and death
but between dying now
and dying later.
If we suffer advanced dementia, when is the best time to die?
August 25, 2011; Revised 8-26-2011; 8-31-2011; 9-22-2011; 10-21-2011;
1-14-2012; 2-10-2012; 2-28-2012; 3-21-2012; 7-7-2012; 8-31-2012;
9-7-2012; 12-13-2012; 3-31-2013; 4-21-2013
James Leonard Park is an existential philosopher
and advocate of safeguards for all end-of-life decisions.
He is the founder of a website called
Safeguards for Life-Ending Decisions:
Much more about him will be found on his personal website,
An Existential Philosopher's Museum:
This 'museum' now has more than 1,000 'rooms'.
The above discussion of merciful death for
is also Chapter 45 of How to Die:
Safeguards for Life-Ending Decisions:
"Life-Ending Decisions for Alzheimer's Patients".
you like to join a world-wide cyber-seminar
is discussing this book-in-progress?
the complete description for this seminar:
our Facebook Group called:
for Life-Ending Decisions:
Here are a few related essays also by James
Why Giving Up
Water is Better than other Means of Voluntary Death .
Death by Dehydration:
Safeguards to Make Sure it is a Wise Choice .
Losing the Marks of Personhood:
Discussing Degrees of Mental Decline .
Live Well Now, Omit the Last Month .
Taking Death in
Stride: Practical Planning .
A Paradigm for Life-Ending Decisions .
Choosing Your Date of Death:
How to Achieve a Timely Death
—Not too Soon,
Not too Late .
Secure the Right to Die:
Laws Against Causing Premature Death .
to Right-to-Die Laws:
Granting Permission and Banning Harms .
Directives for Medical Care:
24 Important Questions to Answer
for Life-Ending Decisions
Will this Death
be an "Irrational Suicide" or a "Voluntary Death"?
Will this Death
be a "Mercy-Killing" or a "Merciful Death"? .
Methods of Choosing Death .
Choosing Death in a Right-to-Die Hospice .
of Brain-Dead Bodies .
Books on Voluntary Death
Books on Preparing for Death
on Terminal Care
Books on Helping Patients to Die
Best Books on
Go to the Right-to-Die
Go to the Book
to discover 350 book reviews
organized into more than 60 bibliographies.
Return to the DEATH
Go to the Medical Ethics
Go to other
cyber-sermons by James Park,
organized into 10 subject-areas.