FOR ALZHEIMER'S PATIENTS
There are about 5 million
Alzheimer's patients in the USA.
And other countries have similar numbers.
These patients are at different stages of mental decline.
This brain disease often causes several years of dementia before death.
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
will only increase in
—as 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.
Even in advanced societies, 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 millions of patients
disease or other forms of mental decline.
They need constant care because they cannot 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.
If we get Alzheimer's disease, how long should we be
1. WHO SHOULD MAKE THE LIFE-ENDING DECISIONS?
WHEN SHOULD DECISION-MAKING POWER
SHIFT TO THE
FIFTEEN SAFEGUARDS FOR MAKING
4. WHICH METHODS ARE BEST FOR DRAWING LIFE TO A CLOSE?
5. MEDICAL METHODS OF MANAGING DYING
WHO REJECT POISON
who originally thought that Alzheimer's patients
should be kept alive as long as possible
might have their minds changed in the direction
of allowing some wise end-of-life choices to be made for patients
with very serious brain diseases and other forms of dementia.
15 specific methods for considering the best course
show how several concerned persons might take part
in making even life-ending choices
when the patient has lost most capacity to make medical decisions.
Life-ending decisions are already being made
for patient's whose meaningful lives are over.
Now we might organize
and regularize the
for choosing the best pathway towards death
for patients who can no longer make their own medical decisions
or enforce their settled values.
FOR ALZHEIMER'S PATIENTS
James Leonard Park
1. WHO SHOULD MAKE THE LIFE-ENDING DECISIONS?
Terminal care decisions for Alzheimer's patients
become especially difficult because of 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
who are still thinking clearly.
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 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
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 most reasonable relative.
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 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
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
SHIFT TO THE
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 patient's thinking-power.
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 recording 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.
SAFEGUARDS FOR MAKING
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 15 guidelines or procedures 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" page 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.
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
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.
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 create a separate document
stating their judgment
that this patient has an illness
or condition inevitably leading to death.
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
When 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 at some stage of mental
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
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
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 this advocate agrees that the medical decisions are wise and proper.
PROSECUTOR (OR OTHER LAWYER)
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 prepared documents.
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 all
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. WHICH METHODS ARE BEST 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
death should be recorded as progressive Alzheimer's disease
and the medical
methods of managing dying should be named:
withdrawing a feeding-tube, ending all life-prolonging medical
increasing symptom-controling drugs, beginning terminal sedation, etc.
The complete medical record will describe the mental decline of the
because of Alzheimer's disease or some other cause of dementia.
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.
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?
METHODS OF MANAGING DYING
WHO REJECT POISON
Even in those
locations where gentle poison is a legal option,
many families want to avoid any thought to killing their loved ones.
Thus, the vast majority of deaths chosen for Alzheimer's patients
must use other
medical method of managing this process of dying.
A. Avoid All Future Life-Saving Medical Treatments.
Especially when the family believes only in
completely passive dying,
they might choose a studied
course of non-action.
In cooperation with the physician in charge,
they might have medical orders written to reject in advance
any medical efforts that might be used to save this patient from death.
The best-known of these medical order is
If and when this patient begins to die from any cause,
no medical interventions will be used to prevent death from occurring.
If the patient catches pneumonia, no antibiotics will be ordered.
If the patient catches the flu, it will be allowed to run its course.
If the patient has a stroke, he or she will not be hospitalized.
If the patient has a heart-attack, no efforts will be started to
If the patient begins to die from cancer, that disease will not be
If the patient develops breathing problems, there will be no
It might seem uncaring to choose this course of
but when the patient is already near the end of his or her life,
then this is a valid and legal choice to avoid all future life-saving
If any family members have doubts about ordering no intervention,
this might be an occasion to review the documents
proving that the 15 safeguards (that take up 4 pages of this chapter)
have been carefully fulfilled:
This patient's meaningful life is over.
And taking the next
available exit is fully justified.
B. Adjust Medications Already in Use.
Once the proxies have decided to draw their
patient's life to a close,
they might consult with the physician in charge of the patient's care
to determine how best to make changes in medicines
to allow their patient to decline into a peaceful death.
Some of the drugs already in use might be for the
of preventing some form of physical problem
such as high blood-pressure, diabetes, blood-clotting, etc.
As part of the collective decision to draw this life to a close,
all medications intended to save the patient from death
can be discontinued on a chosen date.
Or they might be withdrawn one-by-one
in some sequence that makes sense for this patient.
If the patient is receiving any pain-medication for
then the doctor can order a steady increase in these drugs
with full acknowledgment to everyone legitimately concerned
that this gradual increase in the pain-killers
will probably shorten the life of the patient.
And with full knowledge of all of the other physical problems,
the doctor might be able to predict with some accuracy
how long this process of increasing the pain-medications will last.
To prevent any suffering that might result from the
the doctor in charge might also order some additional medications
for the purpose of preventing the unwanted side-effects.
New drugs might be ordered to make the patient more comfortable.
Care should be taken in making any such changes of
to make certain that these adjustments are fully within medical ethics.
If there are any doubts by anyone,
a second professional opinion can be obtained
to either affirm the original plan or to suggest some changes.
A specialist in Alzheimer's patients nearing death
might recommend a good plan for end-of-life drugs.
And because the patient's death will come within a
everyone in the family should be informed that the end is near.
C. Induce Terminal Coma.
Once everyone agrees that this patient's life is
it might be merciful to keep the patient asleep
for whatever remains of the process of dying.
This would be especially appropriate if the Alzheimer's patient
is having terrible psychological symptoms of the disease.
The doctor in charge can order a continuous flow of drugs
to keep the patient completely unconscious for the rest of his or her
Once again, this order for permanent sleep until
would only be appropriate when using the safeguards above
has convinced everyone that this patient is at the end of his or her
The exact duration of this induced terminal coma
will depend on all other factors about this patient's condition.
But normally, the family should expect death within a week or ten days.
D. Withdraw all forms of Life-Support, including
Food and Water.
Many Alzheimer's patients have forgotten how to eat
And feeding them by hand has become too dangerous
because they do not swallow well either.
Food often goes down 'the wrong way'
and the patient dies from food in the lungs.
In America, a feeding-tube is often used to
prevent such problems.
And a feeding-tube can also be the method of choosing death.
If most of the safeguards have already been fulfilled,
it become a legal choice for the proxies to authorize
withdrawing the feeding-tube,
with full knowledge that without food and water,
this patient will soon die of dehydration.
If there were any other forms of life-supports
besides a feeding-tube,
then these can also be discontinued and disconnected at the same time.
Withdrawing a respirator will usually allow death to come immediately.
Appropriate forms of comfort-care should be provided
so that the Alzheimer's patient does not suffer unnecessarily
as the result of withdrawing any and all forms of life-support.
Giving up life-supports is a fully legal option
wherever they are used.
The process of discussion that results from applying the safeguards
might conclude that death now
is better than death later.
E. Combine the Best Methods of Managing this
After the family has examined their own feelings
about each of these medical methods of managing dying,
they might settle on some meaningful combination
of actions and non-actions.
Perhaps providing food and water has already been
because it was too difficult for everyone concerned.
And this could also be a convenient time to cancel all medications
that were intended to prevent various medical problems.
If and when these changes create problems
either for the patient as the dying individual
or for the family who must observe the dying process,
then terminal coma might
be held in readiness:
If being awake and aware creates too many problems,
then it might be best for all concerned
for this dying patient be kept deeply asleep
while the process of dying unfolds as expected.
Given that this Alzheimer's patient is dying,
what is the best pathway?
who have relatives with Alzheimer's disease
might now see a reasonable pathway towards death
for the patient who has lost the mental powers
to make any medical decisions,
including choices about the best time to die.
When the best safeguards have been fulfilled,
the proxies have in hand the written statements
of several other people who have considered this patient's situation.
And the proxies can choose the best possible methods of dying.
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;
3-31-2013; 4-21-2013; 5-7-2013; 8-2-2014;
7-11-2015; 10-9-2015; 12-23-2015;
5-1-2016; 5-5-2016; 10-23-2017; r 12-19-2017; 10-5-2018;
James Leonard Park is an advocate of safeguards for
all end-of-life decisions.
He is the founder of a website called
for Life-Ending Decisions.
more about him will be found on his personal website:
The above discussion of merciful death for
is also Chapter 52 of How
Safeguards for Life-Ending Decisions:
"Life-Ending Decisions for Alzheimer's Patients".
you like to see such ideas more widely available?
Feel free to share this chapter with any other interested readers.
For a more conservative approach to Alzheimer's
read this brochure from the Alzheimer's Association:
Disconnecting life-supports such as a feeding-tube or respirator
are common ways managing the dying process for Alzheimer's patients.
Because this discussion of end-of-life decisions
for Alzheimer's patients
was originally the last chapter in PART FIVE of
Safeguards for Life-Ending Decisions,
the following summary is attached here.
If you would like to read any of the other chapters summarized below,
just click the chapter number on the right.
In 2014, a new chapter on the deaths of children was added to PART FIVE.
So that is the actual place where this summary will appear in the
of Part Five
Others to Choose Death Wisely
Patient autonomy means that the primary decider is
But the very process of dying often causes decline in mental capacities,
including all abilities to make wise medical choices.
In such situations, the proxies (formal or informal) must decide for
Historically speaking, the hospice movement and the
have been far apart, even tho both take care of the dying.
But hospice care will probably allow patients and their families
to use more liberal methods of managing
A right-to-die hospice would allow patients and
to choose any combination of the following methods of dying:
1. providing comfort-care to prevent all suffering; 2.
inducing terminal coma;
3. ending all curative treatments and life-supports; 4. voluntary
& 5. (where permitted by law) gentle
When hospice programs openly acknowledge
that they allow patients to exercise such choices at the end of life,
safeguards for life-ending decisions become more relevant than ever.
Using 26 safeguards for life-ending decisions in hospice care.
When will the first right-to-die hospice be created?
Some opposition might arise because of negative media
but even adverse publicity can be turned positive
if the first right-to-die hospice program is prepared to explain
how all of the end-of-life choices it offers are completely legal and
Such discussion of end-of-life options will advance the
The public already accepts 'pulling the plug' as a
valid life-ending decision.
when they are no longer helpful
could become a paradigm for
all life-ending decisions.
When the patient has become a 'former person',
the family members who have been closest will discuss such mental
Which dimensions of personhood have
And if the patient has Alzheimer's disease or some
all further decisions must be made by the duly authorized proxies.
Good safeguards can help the proxies to make life-ending
Sometimes newborns, infants, & children also
Their parents can use the safeguards discussed here
to make wise life-ending decisions for their dying
Here are a few related chapters and essays:
Easing the Passage into Death
Dying in Your Sleep---Guaranteed
A Paradigm for Life-Ending Decisions
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
Stride: Practical Planning
Choosing Your Date of Death:
How to Achieve a Timely Death
Not too Late
Adding Medical Methods of Managing Dying
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
be an "Irrational Suicide" or a "Voluntary Death"?
be a "Mercy-Killing" or a "Merciful Death"?
Methods of Managing Dying
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
Go to the Right-to-Die
chapter about closing the lives of Alzheimer's patients
also appears in these shorter books:
the End of Life
Return to the DEATH
Go to the Medical
Go to other
essays by James Park,
organized into 10 subject-areas.