ALZHEIMER'S DISEASE---How I want to be treated if I lose my mental capacities

I have written and published my comprehensive Answer
to this Question in my book called Your Last Year:
Creating Your Own Advance Directive for Medical Care
The following 5 pages are quoted from that book.
The page numbers appear at the bottom of each page.
If you quote anything from this book,
please give the correct page numbers.

The following is a good way to cite this book:

James Leonard Park
Your Last Year:
Creating Your Own Advance Directive for Medical Care
(Minneapolis, MN: Existential Books: www.existentialbooks.com, 2006)
{followed by the pages from which you quote}

Most people who create Advance Directives for Medical Care
will want much shorter documents.
Use only the ideas and/or words
that you find useful for your Advance Directive.

Question 6: How do you want to be treated if you get Alzheimer's disease
or some other condition that limits your mental abilities?

Answer 6: If I Get Alzheimer's disease
or a Similar Condition that Limits My Mental Capacities

    Dementia or other forms of mental decline
that limit the proper functioning of my brain might come on slowly.
It is quite possible that I will never experience mental degeneration.
But if I do, this Answer will be very important.
When I first composed these thoughts in 1996,
it was a convincing proof that James Park's mind was operating quite well at that time.
Since then, I have revised and reaffirmed these views a number of times.
The views I have consistently held as a fully-functioning person
should determine my treatment at a later time in my life
if I become a former person according to my own criteria.

    My most comprehensive treatment of this possibility is contained
in my small book When Is a Person? Pre-Persons & Former Persons.
I will revise that book, keeping it the best representation of my views.
When Is a Person? asks the question abstractly:
How would we recognize personhood in anyone?
And this Answer of my Advance Directive will apply those criteria
to the problem of deciding when I have become a former person.

    At this point in my life—age 65—I have no signs of Alzheimer's.
And I do not expect such problems to develop in the next few years.
But if I live long enough, small strokes or other brain problems
might rob me of my mental powers bit by bit—or perhaps all at once.

    If I develop any brain diseases or conditions, I want them treated
to the full capacities of medical science as then developed.
Good ways to delay or even reverse Alzheimer's disease
might be discovered in the first few decades of the 21st century,
when it might be relevant to my condition.
I approve whatever treatments might be appropriate.

    The first mental capacities I might lose are the ones I discuss
in the autonomy section of my book on personhood.
I have lost my autonomy when I no longer lay plans
(such as my project of writing this book) and carry them out.
In a sense, this might be a return to childhood,
which was also a time when I functioned without much autonomy.
During childhood my parents made important decisions for me.
The basic difference between childhood and the possibly-senile phase
is that I grew out of my childhood 'innocence',
but growing out of senility is not as likely.
Senility usually continues to worsen.

JAMES PARK’S ADVANCE DIRECTIVE FOR MEDICAL CARE—5th Edition, 2006          211

     Living as a child was certainly an enjoyable phase of my life.
And while I am still able to function at least at the level of a child,
I should probably be kept alive.
But I might regress mentally and behaviorally to the point
where I must be watched every minute I am awake
to make sure that I do not harm myself or others.
When my life becomes a problem rather than a joy,
that might be the time to declare my functional life at an end
and to make plans to bring my life to a peaceful conclusion.

    Before this point for ending my life comes,
there might be preliminary milestones that mark such degeneration.
Perhaps I will no longer be able to pass the driving test
because my mind does not operate as well as it does now.
And I might lose the capacity to handle my financial affairs.
If others must take over such parts of my life,
these will be signs that I am moving toward becoming a former person.
It might even be necessary to appoint a legal guardian
because I can no longer handle the practical details of my life.

    I imagine Alzheimer's disease to be similar to dreaming.
In dreams, lots of impossible things happen to me and around me.
I try to solve problems that can never be solved.
I am always glad to awaken from such dreams:
I abandon my confusing dream-projects
and return to the real world, to meet the real challenges of living
and to resume the life-projects I find meaningful.

    Sometimes when I am still dreaming,
I recognize that my thoughts are distorted,
which leads me to say that I must be dreaming.
But this does not always cause me to awaken.
I sometimes just go into another story—another level of dreaming.
I wonder if being senile is like dreaming from one level to another
without the possibility of awakening.

    Another early sign of Alzheimer's disease and like disorders
will be the loss of language ability.
Even now when I am merely tired,
I forget how to spell some words that I have used all my life.
When I return to a better level of functioning,
I remember how to spell them once again.

    There are some brain problems that take away
only the possibility of creating language,
while the capacity to understand language remains.
If this happens to me, it will certainly be a serious limitation,
but that alone will not mean that I have ceased to be a full person.

212    YOUR LAST YEAR: CREATING YOUR ADVANCE DIRECTIVE FOR MEDICAL CARE

    Memory loss is another important sign of brain dysfunction.
At first I will be able to recognize my own memory loss;
I might notice some facts slipping out of my random-access memory.
But later, my memory loss might be so severe
that I no longer realize that I have lost most of my memory.
Then the people around me will be able to evaluate
my loss of faculties better than I can.
Thus I give the responsibility to evaluate my mental functions
to others whose capacities as full persons are not in question,
specifically, the members of my Medical Care Decisions Committee.

    If and when the early signs of brain dysfunction appear,
we will seek medical help to slow the decline or perhaps reverse it.
But if Alzheimer's disease or some similar condition
is likely to be a fact of my life for the rest of my days,
it is time for me to confer with my Medical Care Decisions Committee
and map out plans for the rest of my life.
This will be a good time to use the questions for proxies on pages 81-93.
These questions are divided into four groups:
(1) consciousness & self-consciousness; (2) memory;
(3) language & communication; and (4) autonomy.
These are the four capacities that define personhood in my view.

    If my MCDC and their medical advisors agree
that I am declining as a person, let the end-of-life discussions begin.
If I can still participate meaningfully in these discussions,
I would like to be included.
But I foresee the possibility that I might have lost so much
of what now makes me a full person
that I will not understand the words that I now write.
In that case, my MCDC will have to work out the last phase of my life
without any new input from me.
But I hope that they will consider what I wrote about the subject
while I will still clearly a fully-competent and intelligent person.
My writings are the best representation of my settled values.
Many of my writings have been revised several times.
For example, this is the fifth edition of my Advance Directive.

    Because my personal decline might be slow
—taking place over a period of several years—
it might be difficult to draw a precise line
separating my life as a person from my later life as a former person.
But those who knew me as a fully-functioning person
will be in the best position to see the contrast in retrospect.
The people I have selected to be members of my MCDC
are responsible for deciding when to declare
that I have died as a self—that I have become a former person.

JAMES PARK’S ADVANCE DIRECTIVE FOR MEDICAL CARE—5th Edition, 2006          213

    Using the questions for proxies on pages 81-93,
my MCDC will decide when I have ceased to be a person.
(I see them sitting around a table, reading each of the 200 questions,
putting "James" into the blanks in each question.
For example, Question 83 in the autonomy section:
"How well does James process information
and reach rational conclusions?")

     If good medical advice agrees that my losses are permanent,
my MCDC should begin the process of drawing my life to a close,
following the plans laid forth years in advance in my essay
"The Living Cadaver: Medical Uses of Permanently Unconscious Bodies"
and the instructions in PART V of this Advance Directive.

    I realize this will be going beyond generic medical ethics
as they stand now and when the 'living cadaver' essay was written,
but that is the way we make progress in medical ethics.
Someone suggests a change and others discuss it
to help decide whether it is a wise revision of past practices.
And if the patient himself or herself has already given permission
to be treated in the unusual way,
this should make it much easier
for those who must carry out the unusual procedures
to be assured that they are doing the right thing:
Not only will they have thought carefully about
such a frontier question in medical ethics,
but they will have the additional advantage
of having the patient's explicit request
to be treated in some unusual ways
—beyond the generic medical ethics of that day.

    If I permanently lose my personhood,
that is, if most of the answers to the questions in “When Is a Person?”
must be answered in the negative,
I request that all remaining consciousness in my brain be shut down.
When there is a 100% certainty that consciousness can never return,
my life as a person will be completely and permanently finished.
(Answer 19 explains unconsciousness as my preferred definition of death.)
(PART V explains the disposition of my remains.)

    If I am not able to participate in the decision to end my life,
my MCDC will be responsible for setting the exact date of my death.
And this should be coordinated carefully
with the preparations of the medical institution
that has agreed in advance to use my body
as best suits the purposes of medical science,
including using my body as a 'living cadaver'
and donating my usable organs to living persons who need them.

214    YOUR LAST YEAR: CREATING YOUR ADVANCE DIRECTIVE FOR MEDICAL CARE

    In short, if I get Alzheimer's or a similar brain disease
or some other brain condition that cannot be repaired,
I want my MCDC to set the date for my death
at the most appropriate time for all concerned
—both the people who knew me and cared about me during my life
and the medical people who have accepted my anatomical gifts.
This date will come after I have mostly ceased to be a person
(according to my own carefully-drafted criteria and tests)
and before I have spent too much time
in a meaningless existence as a former person.

    I write this statement years in advance of need,
while my mind is still functioning fully and sharply.
Clearly this planning is not itself the product of a diseased brain.
I might not have the capacity at the end of my life
to understand or participate in carrying out this plan for my death,
but it will still be a valid plan, because I have discussed it with
the members of my MCDC and they have agreed in advance
to carry out my plans to the best of their abilities.
This Advance Directive gives them full legal authority
to carry out my plan for the end of my life
—even if I am the first person to donate my remains in such a way.
My moral, philosophical, & legal permission is herein contained.
My medical ethics say this is a much better way to handle my remains
than any of the standard ways of disposing of human bodies.

    This will seem to most people a radical departure from tradition.
But when there is no hope of living a meaningful life as a person,
this is the best way for my remains to benefit other persons.
The deepest respect for the person I was when I wrote these words
is to carry out my careful, compassionate plan for using my remains.
If I become a former person, I donate my body to benefit others.
Instead of waiting for further deterioration,
I authorize and encourage my MCDC to have my body wisely used.
When my life as a person is over,
I willingly give my body for the benefit of others.
If there is ever a direct, irreconcilable conflict
between the views expressed in this Advance Directive
(or a future revision of it)
and the views expressed by a future James Park living in my body
whose decision-making capacity is questionable,
then the views contained in this Advance Directive shall prevail
—even if this means shortening my life as a former person.
If I become senile, for example, my 'views' at that time
will not be as well-thought-thru as my views are now
—as I write and revise my Advance Directive.
In all choices, my MCDC should follow the spirit of this Advance Directive.

JAMES PARK’S ADVANCE DIRECTIVE FOR MEDICAL CARE—5th Edition, 2006          215

James Park's complete Advance Directive for Medical Care
has been revised once again, in 2013.
And this time the whole text is offered for any readers with Internet access:
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/JP-LW.html
So if you plan to print out the section above or any other section,
go to the more recent revision.

Go to other sample ways to avoid being kept 'alive' in PVS.

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James Leonard Park—Free Library