James
Park's Advance Directive for Medical Care
Including
(or Converting to) Durable Power of Attorney for Health Care
with
Detailed Instructions for My Proxies
First
Edition—February 1991; Second Edition—April 1997
Third
Edition—May 2001; Fourth Edition—February 2004
Fifth
Edition—2006; Sixth Edition—April 2013; Seventh Edition---March 2019
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Table
of Contents
The Questions for a comprehensive Advance
Directive (answered here by James Park)
are explored in the main text of Your Last Year and are
printed on the back cover.
James Park's Advance Directive is takes up the last 50 pages of Your Last Year.
And the page divisions and page numbers are preserved in this Internet
version.
Summary
197
Ways in which Others May Use my
Advance Directive
201
PART I. Scope of this Declaration
& Appointment of Proxy Decision-Makers
202
Answer 1: Identifying the Declarant—James
Leonard Park;
the Scope and Function of this
Declaration
—My Medical
Ethics
202
Answer 2: Appointing My Proxy
Decision-Makers
203
Answer 3: Self-Activation of My Medical Care
Decisions Committee 204
PART II. Quality-of-Life
Issues
208
Answer 4: The Level of Personhood
I Wish to Preserve thru Medical
Care
208
Answer 5: I Request All Treatments that Will
Prolong and Preserve my Life as a
Person
210
Answer 6: If I Get Alzheimer's Disease
or a Similar Condition that
Limits My Mental Capacities 211
PART III. Pain Control, Nursing Home,
Financial Limits, & Medical
Information
216
Answer 7: Pain
Control
216
Answer 8: Nursing-Home
Placement
217
Answer 9: I Prefer to Die at Home by
Anesthesia
221
Answer 10: Financial Limits on My Terminal
Care
222
Answer 11: I Want the Whole Truth about My
Medical Condition
223
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 195
PART IV. Life-Ending
Decisions
225
Answer 12: Ending Curative
Treatments
225
Answer 13: Creating End-of-Life Medical
Orders (ELMO)
226
Answer 14: Maintaining Me on Life-Support
Systems
227
Answer 15: Withdrawing and Withholding Food
and Water
228
Answer 16: More Active Means of Ending My Life:
Voluntary Death and Merciful
Death
229
Answer 17: The Conditions under which I
Request Death
232
Answer 18: The One-Month-Less
Club
234
Answer 19: Permanent Unconsciousness
is My Preferred Definition of
Death
235
PART V. Disposition of My
Remains
237
Answer 20: I Wish to Donate My Organs So that
Others Will Live 237
Answer 21: I Wish to Donate My Whole Body as a
Living Cadaver
238
Answer 22: Final Disposition of My
Remains
240
PART VI. Philosophical-Spiritual Perspectives
& Readiness for Death
241
Answer 23: Respect for My Life as a Person;
My Death with Dignity and
Meaning
241
Answer 24: My Readiness for Death; Living Well
to the End
243
PART VII. State Form and Legal
Status
244
Answer 25: The Minnesota Health Care
Directive
244
Answer 26: Legal Status of this Advance
Directive for Medical Care
245
Signature and Witnesses
Page
247
196 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
Summary
of James Park's
Advance
Directive for Medical Care
The following 24 numbered paragraphs condense into
just 4 pages
the basic content of James Park's AD, which begins on page 202.
The numbers correspond to the Questions and Answers of the text.
Thus, much more detail will be found in the comprehensive Answer.
No medical decisions should be based on this summary statements alone.
1. My Advance Directive shall apply to all
situations in which
I cannot make medical decisions for myself
or when I cannot express my wishes
—not merely to a period of 'terminal condition' or 'terminal illness'.
My personal medical ethics (as explained in this Advance Directive)
go well beyond generic medical ethics and standard medical care.
2. My Medical Care Decisions Committee (MCDC)
consists of 5 named persons who have known me for many years.
Routine medical decisions shall be made by the chairperson,
who shall also activate my whole MCDC when needed.
3. My MCDC shall make my medical decisions for me
when I cannot make my own decisions
or when I cannot express my choices.
They shall draw upon my settled values and my medical ethics
as expressed in this Advance Directive.
And they shall consult me as much as possible at any given time.
4. I should be considered a full person
as long as I have the following capacities:
consciousness, memory, language, & autonomy.
When most of these are gone—and are not likely to return—
then my life as a person is over.
I should not be kept 'alive' as a former person for more than one year.
I believe I have the right-to-die.
I affirm the validity of voluntary death,
assisted voluntary death, & merciful death.
5. However, as long as I can live a meaningful life
as a full person,
then I want everything that medical science can provide.
If and when meaningful life as a full person is no longer possible,
then my MCDC should select the best means
to grant me a peaceful and painless death.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 197
6. If I get Alzheimer's disease
or some other condition that limits my mental powers
so that I can no longer plan my own life and death,
then my MCDC shall assess the rest of my life
with the help of medical professionals.
If it seems clear that my life as a full person is over forever,
then my MCDC should take the appropriate measures to end my life
and to donate my body to medical science as explained in Answer 19.
7. If I am conscious and in pain beyond what I can
endure
(judged by myself rather than by observers if I can still communicate),
I request that sufficient pain-medication be given to relieve the pain,
even if the amount needed renders me continuously unconscious
and even if this medication might also shorten my life.
If I am in pain that cannot be controlled
except in ways that make my life as a person impossible,
then we should begin the process of planning my death
at the best time and by the best means.
8. I approve of my being placed in a nursing home
only as a temporary measure while I recover from a disease or injury.
For me, a nursing home should not be used as a warehouse
for a 'living memorial' to the person I once was.
If I become a former person according to my own criteria,
without the possibility of living a meaningful life,
then it is time to draw my life to a close.
9. I prefer to die at home by anesthesia,
whereafter my body will be removed to the medical institution
that has agreed to accept my donation of a 'living cadaver'.
My memorial service should be scheduled
for the same day as my death.
10. I have voluntarily decided to limit the cost of
my medical care.
My life-time total should not be more than one million dollars.
The total cost of each proposed course of medical treatment
should not be greater than
the average annual cost of health care for 7 Americans
for each additional year of meaningful life
gained by that course of treatment.
These voluntary financial limits shall be implemented by my MCDC
if I am no longer able to enforce them myself.
198 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
11. I want full and truthful medical information
—first for myself while I can understand medical matters
and second for the members of my MCDC.
Because of my unusual plans to donate my body when I die,
I need to know even further in advance than most people
just when I am approaching my death.
12. Curative treatments for me should be ended
when it becomes clear that I will never return
to living a meaningful life as a full person.
13. End-of-Life Medical Orders (ELMO) should be
created for me
when I have begun what will probably be the last year of my life.
This written plan will embrace all aspects of my medical care.
14. I should be maintained on life-support systems
only if there is a reasonable chance to resume life as a full person.
'Life-support' systems should not be used merely to delay my death.
15. I approve withdrawing and withholding food and
water
if my life as a person has come to an end.
The underlying disease or condition will be the cause of my death,
not the fact of withholding or withdrawing food and water.
16. I affirm my right to die in all three forms:
voluntary death, assisted voluntary death, & merciful death.
Since I wish to donate my body to medical science and education,
my death will best be coordinated with the medical institution
that has agreed in advance to accept my remains
—for my reusable organs and/or for use as a living cadaver.
17. I request a peaceful and painless death
once my life as a person is over.
Full persons have consciousness, memory, language, & autonomy.
My Medical Care Decisions Committee (MCDC)
will draw upon my own criteria as presented in my small book
When
is a
Person? Pre-Persons and Former Persons.
18. I am the founder of the One-Month-Less Club.
This means that I will live well now
so that I can omit the last month of life,
which would otherwise probably be a meaningless month
spent lying in a hospital bed.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 199
19. I approve my death being declared
on the basis of permanent unconsciousness.
When I am in a persistent vegetative state
or when I am in a coma from which I will never awaken,
then I should be declared dead.
This will facilitate the re-use of my body
for organ donation and/or as a living cadaver.
20. I wish to donate all of my body for the benefit
of others
after I am finished with it.
I am pleased to consider the possibility
that some of my organs and tissues
will be just as useful to others as they have been to me.
21. After I am finished with my body,
I wish to donate it for all possible uses
in medical science and education.
This includes using my body as a living cadaver
for scientific research and the education of doctors and nurses.
In making this unusual anatomical gift,
I realize that we are going beyond traditional medical practice.
22. After my remains have been put to the best uses
possible,
the remains of my remains should be cremated
by the medical institutions involved
and buried by my Medical Care Decisions Committee.
This final disposition of my remains
might take place two years or more after my death.
23. Since I do not believe I have an immortal soul,
I believe that my life as a person of spirit
is limited to the period while I am still alive in body and mind.
When my life as a person is over,
that is the best time for my biological life to come to an end.
24. I am philosophically and spiritually ready to
die.
But I want to live a meaningful life as long as possible.
I put my most important projects first,
so that when it comes time for me to die,
the things left undone will be projects I regard as less important.
My expressed readiness-for-death
should help my Medical Care Decisions Committee
to make the final choices if I can no longer decide my fate for myself.
200 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
Ways
in which Others May Use My Advance Directive
I have published my own Advance Directive for
Medical Care
in the next section of this book in case my thinking might benefit
others.
Each Answer corresponds to the Question of the same
number
in the main part of this book.
Each Question for a 'Living Will' or Advance Directive is repeated
before I give my Answer to that Question.
Each of us should independently think thru these
end-of-life issues.
And we should discuss them with the people who are closest to us,
especially the ones who will be our proxies
or the members of our Medical Care Decisions Committees.
A few other people who might be involved in this process include:
other family members, important friends, our doctors, clergy people,
lawyers, ethical consultants, psychologists, therapists, etc.
If you agree with the medical ethics exemplified in
my 'living will',
you are welcome to adapt my words and phrases.
But you will probably have to re-write every page
because of the frequent personal references included in my 'living
will'.
And expressing your own settled values in your own words
will show that you thought carefully about the last year of your life.
Most readers will want a shorter 'living will',
so you will omit some of the details I have included.
(And you will put in other special provisions I do not have.)
I have not attempted to create an Advance Directive
in general terms,
so that other could adapt it wholesale.
Some Questions (and Answers) will be more important
than others.
You might decide to slip some Questions completely
because they do not address issues that are likely to arise for you.
Likewise, if you know what illnesses you are likely to die from,
you should explain your thoughts about the various paths towards death
that these diseases or conditions leave open for you.
Another book you might want to consult
in creating your Advance Directive for Medical Care
is called When Is A Person?
Pre-Persons and Former Persons
Here is the full text on the Internet:
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/PERSON.html
And the questions for proxies about the four marks of personhood
—consciousness, memory, language, & autonomy—
are included in Question 4 of Your
Last Year, pages 81-93.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 201
PART I. Scope of this Declaration
& Appointment of Proxy Decision-Makers
Question
1:
Should Your Advance Directive
for Medical Care apply
only when you are terminally ill or permanently
unconscious
or should it apply to all situations in which you
are not capable
of making medical decisions or are unable to express
your wishes?
Answer 1: Identifying the Declarant—James Leonard Park;
the Scope and Function of this Declaration—My Medical Ethics
I, James Leonard Park, currently living at 1829
Third Avenue South,
Apartment 218, Minneapolis, Minnesota 55404; phone: (612) 871-PARK,
being an adult of sound mind, willingly and voluntarily
make this statement as a directive to be followed if and when
I am unable to participate in decisions regarding my health care.
I explicitly do not limit the application of this directive
to a period of 'terminal illness' or 'permanent unconsciousness'.
Rather, it shall apply to all situations
in which I am unable to make medical decisions for myself
and/or I am unable to express my wishes.
The beginnings and endings of these situations
shall be decided by my Medical Care Decisions Committee,
as described in Answer 3 of this declaration.
I understand that my health-care providers
are legally bound to follow my wishes, within the limits
of reasonable medical practice and applicable law.
I also understand that I retain the right to make
medical and health decisions for myself as long as I am able.
In addition, I retain the right to change my mind
about any element of this declaration
as long as I am able to make medical decisions for myself.
This Advance Directive for Medical Care or 'Living
Will'
is an expression of my personal medical ethics.
It is not an attempt to create a universal system of medical ethics
that should apply to all people in similar circumstances.
I recognize that other people will choose other options
when confronted with similar medical problems.
This Advance Directive explains my medical choices.
In general, this Advance Directive for Medical Care
is my statement
of the ways I wish to be treated beyond generic medical ethics,
beyond the principles of standard medical care,
which are necessarily conservative and average
because generic medical ethics strive to make one pattern fit all.
202 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
Basically, I agree with the most advanced and
liberal medical ethics,
but there is much leeway within the common law,
within the precedents that govern medical practice,
within generic medical ethics as taught in medical schools,
and within the personal medical ethics of each doctor or nurse.
Most medical professionals recognize the right of others
to make different medical decisions than they would for themselves.
This Advance Directive states what options should be selected for me
even if my choices go beyond the edge of contemporary medical ethics.
Question
2:
What person or persons should
make medical decisions
for you if you become incapable of making your own
decisions
or unable to express your wishes?
Answer 2: Appointing My Proxy Decision-Makers
I hereby create a Medical Care Decisions Committee
(MCDC)
to make my medical decisions for me
during any period of time (either temporary or permanent)
when I am not able to make my own decisions
or during any period of time when I am not able to express my wishes.
The chairperson of my MCDC shall sign
medical-consent forms for me.
Emergency and routine consent shall be given by the chairperson alone.
I authorize the chairperson of my MCDC to make all necessary
arrangements
to carry out all the plans and decisions contained in this Advance
Directive.
The chairperson shall decide when to consult the other members.
Normally, the full committee will make all life-ending decisions.
If not all members of my MCDC agree on any particular decision,
or if some are not available when a decision is required,
a majority of the available members shall have the power to decide.
Each member of my MCDC (including the chairperson) has one vote.
In case of a tie vote, the chairperson's view shall prevail.
None of the persons named in this Advance Directive
bears any financial responsibility for the costs of my medical care.
I have no children or other dependents.
And I am not dependent on anyone else.
Direct expenses such as telephone calls, travel, & legal expenses
associated with the operation of my MCDC will be paid by my estate.
This Advance Directive for Medical Care contains
a health-care power-of-attorney.
I hereby appoint the chairperson to be my health care agent
under Minnesota Statute 145C.
The other members of my MCDC shall be consulted
at least for all decisions that might end my life.
And the contents of this Advance Directive for Medical Care
become my explicit instructions to my health care agent.
{In the official version of this Advance Directive,
an additional page appears at the end (p. 249)
with the names, addresses, phone numbers, e-mail addresses, and
relationships
of each of the five members of my MCDC.
The chairperson and
vice-chairperson are identified.}
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 203
Question
3:
When and how should your
proxies be empowered
to make medical decisions?
Answer 3: Self-Activation of My Medical Care Decisions Committee
I realize it is often difficult to declare someone
incapable
of making his or her own medical decisions.
Especially if we had deep respect for that person (or former person),
we will exercise great care in taking over their medical decisions.
But I believe it is better to transfer this power in an official way
rather than to leave the deciding authority ambiguous.
Thus I have decided to give my Medical Care
Decisions Committee
the power to activate itself.
The members of my MCDC have known me for many years.
They are in the best position to notice the waning of my mental powers.
And they have my best interests at heart.
Thus it would be better for them to decide my capabilities
than for my case to be heard by a judge who never knew me,
based on the testimony of a psychiatrist who talked with me only
briefly.
Of course, if my proxies wonder about my level of mental ability,
they may seek professional opinions if that seems appropriate.
I have offered about 100 questions for examining capabilities
in the autonomy section of my book on personhood:
When Is a Person? Pre-Persons
and Former Persons.
(These questions also appear on pages 88-93 of Your Last Year.)
If my mental powers begin to slip,
this would first become evident to the chairperson
of my Medical Care Decisions Committee,
who has almost daily contact with me.
She should call on the other members of my MCDC
to consider carefully my condition and prognosis,
to ask for some professional advice if that seems appropriate,
and to take a vote about activating my MCDC.
When my MCDC votes to take over my medical decisions,
they shall define the duration of this authority, for instance,
(1) until I regain my mental abilities to decide for myself
(which could be determined by a vote of my MCDC if necessary),
(2) until other members of my MCDC can be consulted, or
(3) until my death if my disability is likely to be indefinite.
The beginning of this authority shall be
communicated officially
to my health-care providers, giving the date and time
that my Medical Care Decisions Committee activated itself.
The duration of these powers shall also be stated.
204 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
I can think of four obvious situations
in which my Medical Care Decisions Committee
should officially take over my medical decisions:
(1) I am unconscious and incapable of being awakened.
(2) I am in a persistent vegetative state.
(3) I am not capable of communicating my wishes in any way,
even tho I might have views concerning my medical care.
(4) My mind is no longer capable (perhaps because of pain or drugs)
of receiving and weighing information
and making wise and rational choices based on my settled values.
Here are some situations in which
I will retain my power to make medical decisions:
(1) When I am a fully rational, functioning, & autonomous person.
(2) When I am still handling my other affairs without problems.
And here are some borderline situations:
(1) When I am awake and aware only sporadically,
so that I cannot be depended upon to make decisions as needed.
(2) When the doctors in charge of my care
find it easier to consult first with my proxies.
(3) When the chairperson of my MCDC
finds herself consulting me less and making decisions herself more.
(4) When I am in too much pain to think clearly
and to weigh the alternatives rationally.
Or when medications make it difficult for me
to understand completely what is going on around me.
The medical personnel might know in advance that certain treatments
(such as drugs) are going to make it difficult
for me to continue making my own medical decisions.
So they can recommend the best time for my MCDC to activate itself.
In practice, this Advance Directive for Medical Care
will come into operation as soon as
I am no longer able to sign my own informed-consent authorizations
—as soon as it seems wise for others to sign for me.
This turn-over of responsibility will occur when I can no longer
make intelligent and informed decisions about my health care,
perhaps because the issues involved are too complex
or because they require more analytical power than I have at the time.
And even while I can still give informed consent,
this prior statement of my personal medical ethics should be consulted.
What I thought beforehand and wrote in this Advance Directive
might be a more valid expression of my settled values
than what I feel when I am in pain, under the influence of drugs,
or subject to the pressure of medical personnel and institutions.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 205
I might also decide voluntarily to turn over my
medical decisions
to my MCDC for a defined period of time
—if I know I will not be able to make decisions during that period
or if I do not want that responsibility.
The power to make my own medical decisions shall be returned to me
if and when I become sufficiently able to analyze my situation
and to process the information necessary to make wise decisions.
If and when my decision-making power is returned to me,
the date and time shall be officially noted in my medical record.
And what if I am semi-capable?
When I am not operating at my mental best,
the official power to make my medical decisions will rest with my MCDC,
but they will ask me to participate in their decisions as much as I can.
I might not be able to weigh all the relevant factors
as well as the members of my MCDC, who are functioning
without the limitations of my disease or condition.
So they might ask me to answer questions I can easily decide.
But the major decisions will have to be made by them.
Their collective decisions might be better than mine.
Thus my MCDC protects me from any possible loss of mental capacity.
When I am no longer functioning as the person I was,
this should be evident to the persons closest to me.
And they will compassionately make my medical decisions for me.
My MCDC shall always strive to follow this Advance
Directive.
But I realize that many possibilities could not be included.
So my MCDC will have to extrapolate from what I have said
to determine what I would have chosen in the unforeseen circumstances.
I believe the power to make my medical decisions
should rest with
the 5 individuals I have chosen to make up my MCDC.
None of them is a doctor,
but all of them have considerable knowledge about medical matters.
They will seek medical advice as needed, of course,
but these people have known me during the best years of my life
and are therefore in the best position to enforce
the choices I have made about medical care and my death,
even if the medical professionals might be reluctant
at first to comply with my wishes.
I give these powers to my MCDC in order to
counter-balance
the decision-making power of the medical professionals
who will be involved in my care.
These medical personnel might have known me only for a short time
and they are more likely to attempt to make decisions
using some general principles—some generic medical ethics—
which might not be appropriate for me,
because I have unusual values and beliefs about life and death.
206 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
Thus, I empower my MCDC to reject the
recommendations of the doctors
if the preferences of the doctors are not in accord with the principles
articulated in this Advance Directive (including appendices, etc.).
If the conflict is serious, my proxies might have to change my doctors.
My MCDC shall have all the same powers to make medical decisions
that I have while I am still fully capable.
My MCDC might be needed to counter-balance doctors
who are accustomed to making all medical decisions
—getting automatic approval from their patients.
Sometimes doctors deal with uncooperative patients
by ordering a 'psychiatric consultation',
which allows the psychiatrist to declare the patient incompetent,
so that the wishes of the doctor can be carried forward.
My MCDC shall not approve a psychiatric consultation
unless they see valid reasons for obtaining such a professional opinion.
As said before, the members of my MCDC
are better able to evaluate my level of mental functioning
than professionals who have known me only a short time.
The members of my MCDC are familiar with my ways of thinking
and my ways of expressing myself.
So they will be the first to notice any disordered thinking.
When I am in the middle of such an episode,
I might not recognize how disordered my thinking-process has become.
If being senile is something like being in a dream,
there might still be some moments of clarity during the day
when I am able to look back on my senile behavior and thinking
and recognize that such disordered thinking was not fully me.
If I slip in and out of such a state without notice,
then I should voluntarily give my medical decisions to my MCDC.
When I have moments of clarity, they should still consult me,
allowing me to participate as fully as possible in the decisions.
But if I am not consistently in my fully-functioning mode,
I cannot be depended upon to make decisions in a timely manner.
So perhaps I should be an ex-officio member of my
MCDC,
participating as much as possible at any given time
but without a vote or other decision-making power.
My MCDC will decide just how to take my current 'views' into account.
They will also have to weigh the professional input
from the doctors and nurses to make medical decisions for me.
And my MCDC shall return my decision-making power to
me
when they determine that I have regained the ability
to make my medical decisions, when, for instance,
I have recovered at least some of my former ability to think.
If this does not happen,
the power will continue to rest with my MCDC indefinitely.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 207
PART II. Quality-of-Life Issues
Question
4:
What level of personhood
do you wish to preserve thru medical care?
When—according to your own criteria—
would you become a former person?
Answer 4: The Level of Personhood I Wish to Preserve thru Medical Care
In all cases, health-care decisions for me should be
made by asking
whether the proposed treatments will enhance my life as a person.
I offer a full definition and description of personhood
in my book When Is a Person?
Pre-Persons & Former Persons.
If time permits, the decision to end my life should be made
only after a thoro discussion by the members of my MCDC
of all the issues raised in that book, as they apply to my situation.
There is no doubt that I have been a full person
most of my life.
But I will have passed over into being a former person
if I have lost most of the following marks of personhood
(and there is little chance of these lost functions returning):
1. consciousness—the ability to be aware of myself
and my environment for at least a part of each day;
2. memory—the capacity to recall who I am
and to recognize the people around me;
3. language—the ability to understand the English language
and at least some capacity to respond to questions put to me;
4. autonomy—the ability to formulate and carry forward
plans and purposes I have created.
Each section of When Is a Person? includes
specific
questions
which might be helpful in determining the degree to which
I retain or have lost these capacities of personhood.
When I have permanently ceased to be a person according to my tests,
health-care and/or other life-support measures to keep me 'alive'
should not be continued for more than one year.
A much shorter period would be wise if I will never be a person again.
When deciding whether or not to authorize a proposed
treatment,
my MCDC shall ask the doctors and each other
whether the therapy will return me to functioning as a person.
Sometimes medicine is practiced merely with an eye to
preserving the life
of the patient. Mere survival is the goal.
And when the body continues to breathe for a few more days,
that is taken as a sign of medical success.
But I want to be alive as a person, not merely maintained as an
organism.
If and when I cannot be restored to my life as a person,
my MCDC should call a halt to further medical interventions.
208 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
For example, I would not want surgery to remove yet
another tumor
if it is already known that I have so much cancer in me
that it will kill me before I can return to living a meaningful life.
And if that period of meaningful life after such surgery would be short,
then the surgery is probably not justified.
I have laid out some rules-of-thumb for such decisions
from the financial point of view in Answer 10 of this Advance Directive.
If I cannot return to living a meaningful life as a
fully-functioning person,
pursing the purposes I found meaningful during my adult life,
I request that my life be brought to a peaceful and painless end
by the best means then permitted by law and medical practice.
Once I have been declared dead according to my own
definition
—permanent unconsciousness (which I explain fully in Answer 19)—
my remains should be used for organ and tissue donation,
medical experiments, anatomical study, etc.,
as described in Answers 20 & 21 of this Advance Directive.
I am not asking my Medical Care Decisions Committee
to violate any laws that might apply or to violate their consciences.
Nor am I asking any medical personnel or facility
responsible for my care to violate any laws.
But I hope that by the time
the provisions of this Advance Directive come into force
the State of Minnesota (or other state in which I might reside)
will have changed its laws to permit (under appropriate safeguards)
voluntary death, assisted voluntary death, & merciful death.
And even if such practices are not yet officially recognized by law,
I wish all concerned persons to know by this Advance Directive
that if I have permanently ceased to be a person
according to my own criteria laid out in When Is a Person?,
my body should be peacefully anesthetized, I should be declared dead,
and my remains should be used as I have directed
in my essay entitled "The
Living
Cadaver:
Medical Uses of Brain-Dead Bodies".
The dispositions of my remains is discussed more fully
in PART V of this Advance Directive for Medical Care.
The personal expression of my own medical ethics
and personal philosophy contained in this Advance Directive
and other supporting writings
might be used to bend or extend the law (or make exceptions)
as might seem wise to the members of my MCDC.
My moral permission contained herein
shows that I believed in my full right-to-die
before such a right was fully recognized in law.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 209
Question
5:
Where do you draw the line
between a quality of life
worth preserving and the remnants of biological life
that should be mercifully shut down?
Answer 5: I Request All Treatments that Will
Prolong and Preserve my Life as a Person
All health care proposed for me should be questioned
with respect to its benefits to me as a person.
If the proposed procedures will merely prolong my process of dying,
I do not want them.
But if there is a good chance that such procedures
will return me to being a functioning person, then they should be used.
As of this date, I hope my life to last until about
2036,
which would mean that I will die at age 95.
As I now project two more decades of life,
I want almost everything that medicine can provide
that will keep me functioning as a person or restore me to personhood.
As I move closer to the end of my life,
I will revise this statement with more knowledge of
the specific medical problems likely to cause my death.
Also, as medical science progresses,
better understanding of medical problems, better means of testing,
& new kinds of medical treatment will become available.
Each decision about appropriate health care
should include a cost-benefit analysis:
What are the costs in hours and dollars?
What are the burdens on me as the patient?
What benefits will the proposed actions achieve for me as a person?
What are the burdens and benefits to those who care about me?
Appropriate health care will always prolong my life
as a person.
If treatments are proposed because they are standard medical practice
or because they can be done, but they provide no benefit to me,
then they should be omitted.
I can easily imagine situations in which medical procedures
would merely preserve some remnants of biological life in my body
after my life as a person is over.
If this is ever the prospect for me,
I hereby grant full and free permission for my MCDC
to decide to terminate whatever life remains in my body
in order to realize my other settled values
(such as benefits to others from the use of my remains)
as expressed in this Advance Directive and related writings.
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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 appear 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,
that was convincing proof that my mind was operating quite
well.
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 77—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 forward.
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—7th Edition,
2019 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 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
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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 create 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 honor 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 seventh 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—7th Edition,
2019 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 Brain-Dead 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 selecting a good time to die.
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
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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—7th Edition,
2019 215
PART III. Pain Control, Nursing Home,
Financial Limits, & Medical Information
Question
7:
If you are in serious pain,
what do you want done?
Answer 7: Pain Control
If I am conscious and in pain beyond what I can
endure
(judged by myself rather than observers if I can still communicate),
I request that sufficient pain-medication be given to relieve the pain,
even if the amount needed renders me continuously unconscious
and even if this medication might also shorten my life.
I have lived an almost pain-free life for 77 years
now.
I had colon cancer in 1993 and 1994, but my cancer caused no pain.
And everything else in my body works well, causing no pain.
Thus I have no track-record of bearing chronic pain.
I do not know just where I might cross the line into intolerable pain.
And I do not know how I will respond to pain-relievers,
since I have such limited experiences with them.
But it seems logical to postulate some point
where the pain will be too great to justify continued existence.
If heavy sedation is required to keep me free of pain,
it might also cancel out everything I regard as me.
If pain-killers cancel my personhood,
and there is no prospect of solving the cause of the pain,
then my life as a person might be over.
Just keeping my body 'alive' in a coma would not be
meaningful.
Others might see some value in keeping an unconscious body 'alive',
but in my view, being 'alive' in a permanent coma
is indistinguishable from being dead.
Right now I do not think that I would want to be
kept alive
if all of my conscious moments were filled with pain.
Pain has a powerful way of forcing
all other contents of consciousness into the background.
Perhaps when I am in pain, I would be able to make
some emergency decisions, such as how to avoid further pain.
But if I had only a pain-filled life to look forward
to,
I might consider this a life not worth living.
If my body is ever filled with incurable and intolerable pain,
I might be able to decide that the time has come to end my life.
But if I cannot decide, then these thoughts will have to stand
as my best attempt to explain my philosophy of pain-control.
216 YOUR LAST
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FOR MEDICAL CARE
The same chemicals that block pain can also render
us unconscious.
Sometimes, we might have to choose between pain and consciousness.
And life without consciousness is meaningless to me.
Thus I will accept pain-medication only as a temporary measure.
After such periods, I would hope to return to a pain-free life
without the help of pain-medications.
In my case, there is no need to worry about
addictive medications,
since if I recover, I will have no inclination to seek illegal drugs.
When I had cancer surgery in 1993 and 1994,
both times I had a morphine pump during the recovery periods.
I did not especially like the effects of this drug;
and I had no interest in anything like morphine
after it was no longer needed to relieve my post-operative pain.
Receiving pain-control drugs at the end of life will
not be a problem,
because permanent unconsciousness caused by drugs
is my ideal way to approach the moment of the declaration of my death.
This will allow my tissues and organs to be harvested
while they are still in good condition.
If I am in pain that cannot be controlled except in
ways
that make my life as a person impossible,
then I would prefer death.
Question
8:
Do you want to be put into a nursing home?
If
so,
for how long, under what conditions, and for what
purposes?
Answer 8: Nursing-Home Placement
In my view, the most valid use of nursing homes
is for a period of recuperation after an accident or surgery.
In some cases, this could even be a long period of recovery.
If there is good reason to believe
that I can return to a meaningful life outside of the institution,
then a nursing home might be a good place for me.
I fully approve of such temporary placements.
But nursing homes are more often our last residence
before death.
And we are placed in nursing homes because we cannot care for ourselves
due to physical or mental limitations from which we will never recover.
I would agree to live in a nursing home
if I found it necessary because of some physical limitations
that could best be dealt with in those circumstances.
And this kind of placement would be my own choice
—while I am still fully capable of making such decisions.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 217
But placement in a nursing home because of mental
limitations
would be a decision to be made by my Medical Care Decisions Committee.
And they might decide that it would be better to end my life.
They will make such a decision by asking the questions for proxies
in Question 4—on personhood (pages 81-93).
These questions also appear in my small book When Is a Person?
—where they are given a larger context of explanation.
If my MCDC determines that I have already become a former person,
and that I am not likely to return to being a full person,
then I freely authorize them to begin planning the end of my life.
I recommend that my MCDC follow the safeguards explained in
How to Die: Safeguards for
Life-Ending Decisions, my longest book.
Or they might decide to put me in a nursing home
temporarily
—to see how well I adjust to those living conditions.
If I seem to enjoy living in a nursing home or some other assisted
living,
they could extend my life a few months at a time.
If such placement allows me to pursue a meaningful life,
then that living arrangement should continue.
But if I do not seem to be happy in a nursing home,
then it will be the responsibility of the members of my MCDC
to remove me from the nursing home and to transfer me
either to die at home as described in the next Answer (9)
or to die in the medical institution that has already agreed
to accept my remains to be used as a living cadaver—Answer 21.
I do not want my body kept alive in a nursing home
after my life as a person is over.
In my view, human beings should not be kept 'alive' as vegetables
for years after they have ceased to be human persons.
When it is custodial care of a body with few signs of personhood,
then it might be time to bring what remains of that life to an end.
Usually such maintenance is based on a 'respect for life'.
Others might define proper respect in other ways,
but I want to be respected as the person I was during my best
years.
I explicitly do not choose to have my body kept alive
as a 'living memorial' to the person I once was.
Thus, I do not approve any indefinite placement in a
nursing home.
If I am ever placed in a nursing home, there should be a definite plan
to re-evaluate my situation by a specified date.
My MCDC should also consider financial factors in nursing-home
placement.
And when the original purposes
for which I was placed in a nursing home no longer apply,
then the next decision might be for merciful death.
I am not putting any definite time-limit on nursing-home-care,
but one year as a former person should be plenty of time to see
if I will ever return to being a full person who wants to continue
living.
218 YOUR LAST
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To preserve my life in a nursing home, I must still
be a person.
Do I still have consciousness, memory, language, & autonomy?
Do I have some of these marks of personhood at least part of the time?
I have always valued my life as a person.
And I want to have as much meaningful life as possible.
Each additional day of my life actualizes more meaning.
But toward the end of my life,
the opportunities for meaning might be less
and the amount of suffering might be more.
While I am in possession of my full powers of reason,
I will gage the relative amounts of suffering and meaning in my life.
And in some lucid moments, I might notice that
there were no moments of meaning in the past week of my life.
When I can no longer make such evaluations for myself,
my MCDC will have to ask such questions.
As I see it now, keeping my body alive
in order to achieve just one hour of meaningful life in a week
is a very poor trade-off.
If the proportion of meaningful hours were that poor,
then my plan for a merciful death and body-donation should begin.
And those who respect my autonomy as the person I now am
will allow such plans to be carried out.
Certainly, when there are no moments of lucid, meaningful life,
then I should be allowed to die according to my careful prior plans.
As I have said elsewhere (Answer 14 of this Advance
Directive),
my body should not be kept alive for more than 12 months
after I have ceased to be a person by my own criteria.
In many cases, a period of much less than a year as a former person
will be completely sufficient to be assured
that the person James Park will never return to my body.
One month might be a reasonable period of waiting for recovery.
Especially if I am in my 90s,
I will not worry about losing a few days of my remaining life.
And when the quality of my daily life is low, no one should fret
about shortening the number of months of such existence.
My criteria for personhood can be understood
by any person who is still able to think.
But my MCDC should ask for professional advice
concerning the possibility that I might regain some or all
of the capacities that made me a person during most of my life.
Will I once again exercise the following capacities:
consciousness, memory, language, & autonomy?
As I think of the most important right-to-die cases
in recent years,
I know I would have 'pulled the plug' years before it was actually done.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 219
Nancy Cruzan 'lived' for almost 8 years
after she lost consciousness in an automobile accident.
All those years of her 'life' were completely meaningless for her
according to my philosophy of life and death.
However, I would have wanted to determine
with as much certainty as possible that she would never recover
—which might have taken a few months at the most.
But when no meaningful life was possible,
all life-supports should have been disconnected.
In my view, life as a person is certainly over
for someone in a persistent vegetative state.
Karen Ann Quinlan 'lived' almost 10 years
in a persistent vegetative state.
Her feeding tube should have been removed years earlier.
Proper respect for the lives of these women
did not consist in keeping their bodies 'alive'
long after their lives as persons had stopped.
I never want anything like that to happen to me.
And this Advance Directive makes this clear in several ways.
But there are many conditions between
full personhood and persistent vegetative state.
If my condition prevents me from making my own choices,
my MCDC will have to make wise decisions,
based on my medical ethics as expressed in this Advance Directive.
And finally, here are my thoughts
on the quality of my life in a nursing home:
If I am put in a nursing home, I will be cared for by strangers
who are providing that care because they are being paid.
They might have no appreciation of my prior life.
The information that I was a philosopher might be available to them,
and perhaps they could look it up if they were really interested,
but that would not be relevant to their daily interactions with me.
They will know my body better they know my mind (as it used to be).
And if my mind is gone, they cannot know me as a person.
Reading about me would be the same as reading about a dead person.
And if I could not remember the best years of my life,
I also would have become a spectator of the life of James Park.
My nursing-home care will probably be paid for by
taxpayers.
I would prefer that such money be spent in more meaningful ways,
rather than preserving the last vestiges of life in my body.
As I approve of 'pulling the plug' for other people
whose lives have lost all possible personal meaning,
so I would approve the same choice being made for me.
The time and money spent tending my body can be put to better use.
220 YOUR LAST
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Question
9:
Where would
you prefer to die?
Answer 9: I Prefer to Die at Home by Anesthesia
If I am still living at home when it comes time for
me to die,
I would request that my life be brought to an end
at a time convenient for me and for those who care about me
by the administration of an anesthetic
that will render me permanently unconscious.
Then my unconscious body can be moved to the medical
institution
that has already prepared to receive my donation of a 'living cadaver'.
Some evaluations of my body can be done while I am still alive,
but I have decided that I would prefer not to be awake
for any of the procedures that might be disturbing
to me and/or to the people around me at the time of my death.
No medical equipment should be attached at home,
with the possible exception of an IV tube for the anesthetic.
My voluntary death or merciful death at home
by means of an anesthetic that renders me permanently unconscious
will also make my death easier for others.
They will not have to go to an unfamiliar hospital.
They will remember my death as occurring in familiar surroundings.
My death will be declared at home
by a doctor who has already agreed to my criterion of death
—namely permanent unconsciousness. (See Answer 19.)
This means that my friends and relatives
will not have to follow my body to the hospital
where it will be used as I have explained
in Answers 20 and 21 of this Advance Directive.
Such removal to the hospital would be equivalent to
a body being taken to the mortuary after a death at home.
I hope all will agree that my death took place
when my consciousness went out for the last time.
What happens after that in the hospital
is like what happens in a mortuary after death.
All who want to be present at my death will be there.
The after-death family events can begin immediately.
If there has been sufficient time to arrange my memorial service,
it can be held the same day as my death.
As soon as my death is declared and my body removed,
everyone should go to the place where that service is scheduled.
Because I have donated my body as a 'living cadaver',
my friends and relatives will have no further concerns for my body
after it is taken from my home by the medical staff.
And all expenses thereafter will also be borne by others
—whoever will benefit from the use of my remains after my death.
If my plans cannot be followed exactly, my MCDC will make adjustments.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 221
Question
10:
Will you put financial limits on your terminal
care?
Answer 10: Financial Limits on My Terminal Care
Because the last year of my life is likely to have
the highest cost and the lowest quality,
I hereby direct my MCDC to consider the costs of my medical care,
no matter what the source of such payments.
It is most likely to be the taxpayers—thru Medicare.
Here are some general guidelines:
My life-time health-care expenditures should be less than $1 million.
This will be an estimated figure,
since no single agency is keeping a total of my health-care expenses.
But if I am receiving very expensive care toward the end of my life,
my MCDC can easily guess if I am approaching my million-dollar limit.
Another guideline is the cost and benefit of a
particular procedure.
For example, in 1993-94, it cost about $33,000 to cure my colon cancer.
Since these treatments added more than 25 meaningful years to my life,
the cost was justified according to the following cost/benefit formula.
For each additional meaningful year of life gained
as the result of some course of medical treatment,
the cost of that treatment should not be more than 7 times
the average annual medical cost for Americans.
In 2019, the average cost of medical care was $12,000 per American.
So in 2019 dollars, each additional meaningful year of life gained
by a particular course of treatment should not cost more than $84,000.
Later in my life, any particular form of treatment
will yield fewer additional years of meaningful life.
When I consider my own health-care choices while I am still able,
I will apply this standard to myself.
I will decline expensive medical care if the proposed medical treatment
costs more than 7 times the average annual medical cost per American
for each additional year of meaningful life that treatment will enable.
If I conclude that curative treatment is too
expensive,
then supportive care should be provided until the natural end of my
life.
And when my MCDC must make such choices
(because I have become a former person who cannot decide for myself),
it will probably mean that the meaningful part of my life is already
over.
Thus, expensive medical procedure would not be justified.
If no additional meaningful years of life will result,
then all curative medical treatments should end.
222 YOUR LAST
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Thus, when my MCDC is faced with medical-treatment
choices
that would cost more than the financial limits I have described above,
it will be reasonable for my MCDC to begin the death-planning process
rather than authorize the wasteful expenditures of money
on James Park, who has now become a former person
with little chance of returning to being a full person.
Question
11:
How much do you want to know
about your medical condition and prognosis?
Answer 11: I Want the Whole Truth about My Medical Condition.
Because I have spent a good part of my adult life
working with medical ethics, especially with issues surrounding death,
I do not need to be protected from the thought of my own death.
I seriously faced this possibility when I had cancer in 1993.
I knew all of the facts of my case then,
which enabled me to make the medical decisions that saved my life.
I respect and understand the need others might have
for a 'softer' version of their medical information.
Their psychological well-being might depend on being kept hopeful.
But being in control of my own destiny
is more important to me than having false hopes.
I know from experience, that the more I know about my condition,
the better I feel, even if the information is unpleasant.
When I had cancer, I read over 20 books on the
subject.
I did not want to deny the facts even for a moment.
I did not consider any folk medicine or miracle cures.
Rather, I chose the scientifically-tested treatments:
surgery, radiation, & a small amount of chemotherapy.
I do not know what disease or disorder will end my
life,
but as I affirmed when I had cancer, I still believe in the
right-to-die.
And even if I die from 'old age'
—the closing down of several physical systems at once—
I want to know everything about my medical condition in order to make
the wisest possible decisions about when and how to meet my death.
I follow all of my medical records electronically.
This allows me to keep fully informed about my tests and treatments.
And I can check past records several years back.
Because of my experience with a life-threatening
disease,
I know that I can psychologically handle the full truth.
So, my past record of dealing with medical information
should give my doctors full confidence
that they can share everything with me as soon as they know it.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 223
While I remain aware of myself at least part of each
day,
I want to know the whole truth about my medical condition.
The full facts will empower me to make important decisions
—not just the necessary medical choices
but also other end-of-life actions such as:
communicating with relatives and friends,
closing down important life-projects, distributing my assets, etc.
In my case, it will be better for me to know the whole truth
rather than to be 'kept hopeful' to help my body fight the disease.
I cope better when I believe I have all the facts
—when I am not guessing how much is being withheld 'for my own good'.
Also the proxies I have chosen to make up my MCDC
are ready, willing, & able to accept and understand the whole truth.
One of them works in a hospital.
Another has worked in doctors' offices.
Two of them lost a son during an operation to correct a heart defect.
All of us have had experience with doctors and hospitals.
We are a medically-literate group of people.
The medical information should be disclosed to all
of us at once,
beginning with whoever happens to be available when the news is known.
There is no need to channel the information in any particular way.
If I become unconscious, if I have become a former
person,
or if I am otherwise unable to understand the medical information,
it should be given directly to the chairperson of my MCDC
—or to other members if that is more convenient.
Because of my plans to donate my organs and/or my
whole body,
I will want to start the process of evaluating my body
as soon as I know that I am within a few months of my death.
(PART V discusses my plans for donating my remains.)
Also, because I am a member of the One-Month-Less
Club (Answer 18),
I plan to bring my life to a close approximately one month before
it would otherwise happen under standard medical care.
So I will want to know that the end is near
somewhat sooner than people who want to live as long as possible.
When I had cancer, I did read parts of my medical
chart,
which I found helpful in making my medical decisions.
Some things are easier to understand in the written form.
So I hope that my doctors will keep my written medical information
in a form that can be read and understood by laypeople.
We will want to see all the written information.
The most important issue will be the prognosis for the rest of my life.
I want the best possible estimate of the duration of my life
—and the quality that I will experience during my last days.
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PART IV. Life-Ending Decisions
Question
12:
When should all curative
treatments be ended?
Answer 12: Ending Curative Treatments
All treatments should benefit me as a person.
When it becomes clear that my life as a person is over,
when there is little reasonable hope that I will recover
enough to resume the quality of life that has been important to me,
then the purpose of my medical care should shift from cure to support.
Supportive care will attempt to make my last days comfortable,
without purporting to cure whatever ails me.
I want no medical support that merely prolongs my
dying.
I hope that my MCDC will have a frank discussion
of the purposes of medical care before they authorize any procedures.
If the proposed procedures can restore me to functioning as a full
person,
they should be tried.
But I do not approve merely prolonging my life as a former person.
I have lived well during the best years of my life,
so it is not difficult for me to give up some last declining days.
Surgery is one example of curative treatment I do
not want
if I have become a former person.
Most surgery is intended to restore the body to a level of functioning
desired by someone who will continue to live a normal life.
If a proposed surgery would only add a few months to my life,
then it would probably not pass the financial test in Answer 9.
And if it would not restore me to functioning as a person,
then it is against my medical ethics.
As of today, I hope to live until about 2036,
which means that I will die at age 95.
For the rest of my life, I want all appropriate procedures
that will preserve my life as a functioning person
or restore me to full personhood if I lose my capacities temporarily.
As I move closer to the end of my life,
I will revise this statement with more insight
into the specific likely causes of my death.
Also, medical science will progress
so that new forms of medical treatment will become available
for whatever diseases or conditions are threatening to end my life.
For each health-care decision we should ask the
following questions:
Will this procedure restore personal life or merely prolong dying?
What are the burdens and benefits for all concerned?
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 225
Question
13:
When should End-of-Life Medical Orders
be written for you?
Answer 13: Creating End-of-Life Medical Orders (ELMO)
When I have probably begun the last year of my life,
my terminal-care physician and I should create End-of-Life Medical
Orders.
This written plan will include the settled values of this Advance
Directive.
Eight sections will explain in actionable form the following issues:
1. date, duration, & updates;
2. identifying the patient and the doctor;
3. my medical problems and the likely pathway towards death;
4. coordination with this Advance Directive for Medical Care;
5. best location for dying;
6. most likely causes of my death;
7. my preferred methods of managing dying;
8. specific medical orders for end-of-life treatments or
non-treatments.
Section 7 will include our decision about
Do-Not-Resuscitate orders.
A sudden accident or failure of vital systems might be accepted.
This will allow any life-threatening change to run its natural course,
resulting in my death from natural causes.
However, my plans for donating my body should be
kept in mind.
I
should be declared dead according to my criteria of death (Answer 19)
or according to other—more conventional—criteria.
And all appropriate procedures should be started immediately
to maintain my unconscious body for transplanting my organs
and other use as a living cadaver—if this is possible.
Creating end-of-life medical orders is not in itself
a life-ending decision.
Even with this written plan for handling end-of-life problems,
in the absence of a death-dealing medical crisis,
I might be able to continue living a meaningful life.
So
all persons concerned should be aware
that deciding not to prevent a natural death if it comes
is not the same as deciding that my life is over.
All life-ending decisions should be discussed
openly and frankly by considering the options
that will actively or passively bring an end to my life.
This ELMO document is not a 'polite' way to choose death.
Many Answers in this Part of my Advance Directive
explicitly discuss making life-ending decisions for me.
I want my MCDC and my doctors to be completely honest
about what is being decided for me.
If the goal is to bring my life to a peaceful and painless end,
then let that be clearly stated in the discussion.
End-of-Life Medical Orders are not a life-ending decision.
But every life-ending decision should take these plans into account.
226 YOUR LAST
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Question
14:
How long should you be
maintained by life-supports?
Answer 14: Maintaining Me on Life-Support Systems
I approve of life-supports as temporary measures
only.
Therefore, I hereby direct that my MCDC approve life-support systems
only if there is a definite time limit stated in the consent form.
(If there is no space for specifying a termination date,
I hereby instruct my proxies to
write such a provision into the consent form before signing.
If this creates problems for the hospital,
emergency life-supports can be continued until the hospital
agrees to accept a time-limited authorization of life-supports.)
Temporary authorization of life-supports will, of
course,
allow my proxies to re-approve the life-supports later
if there seems to be good reason to do so.
In most acute situations, one week should be enough time
to determine whether my condition will improve.
My proxies should ask the doctors how soon results should be seen.
I do not approve using 'life-supports' as
'dying-supports'
—measures that merely prolong the dying process
because no one knows what else to do.
All too often, 'life-support systems' are attached to the dying
for an indefinite period of time—or permanently,
which means that the machines will remain attached
until the patient dies despite such 'life-supports'.
I explicitly rule out such a use of 'life-supports' in my case.
Life-supports should be used for me only in a
restorative mode
—only if there is reasonable hope of restoring my life as a person.
If after some temporary period on life-supports,
it does not seem likely that I will recover to live as a full person,
I should be rendered permanently unconscious
(as described in Answers 20 and 21 below)
and the organ-supports
continued
in order to preserve my body as a living cadaver.
I have underlined the word "organ"
above
because I realize that the same machines used to preserve my life
will also preserve my organs after I have been declared dead.
But when I have been declared dead,
the organ-systems will be maintained by machines
solely for the purposes of others—no longer to benefit me.
And the continuing costs of organ-support
will be paid by the transplant program and/or the training program
that has agreed to use my remains as a living cadaver.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 227
Question
15:
Should food
and water
ever be
withdrawn or withheld
in order to
shorten
the process of your dying?
Answer 15: Withdrawing and Withholding Food and Water
If I have permanently ceased to function as a person
(as described in When Is a
Person? Pre-Persons & Former Persons),
and if there is no reasonable hope that I will ever be a full person
again,
then all curative medical treatments
and all life-support systems should be discontinued.
This explicitly includes any of the several ways in which
water (or other fluids) and food (defined as any means of nutrition)
might be provided to my body.
(Only pain medication and similar comfort-measures
would be appropriate at this point if I am still conscious.)
I realize that the withholding or withdrawal of food
and water
will result in my death within a short time.
But if my life as a person is coming to an end,
and if there is little hope that I will ever be a person again,
then the termination of these means of life-support
is a decisive step in preparing for my death.
While I am still a full person, I have the right to give up food and
water.
When I cannot make medical decisions, this power passes to my MCDC.
As I said in Answer 14 about using life-support
systems,
the same measures and machinery will be useful
to preserve my organs and tissues for use by others
and to preserve my whole body as a living cadaver for medical science.
Thus, I approve continuing nutrition and hydration
after I have become permanently unconscious
and after I have been declared dead.
It should be made clear to all that James Park is dead.
And the continued food and water supplied to my remains
are being provided merely to keep my body as useful as possible
for the purposes of organ-donation and use as a living cadaver.
If it is not possible to use my body as I have
wished,
and if more active means of ending my life are not possible
(as described in the next Answer),
then I entirely approve and endorse withholding food and water
as a means of bringing my life to an end.
This should be understood by all as a passive means of ending my life.
What kills me will not be the withholding of the food and water
but the underlying disease or condition
that has made it impossible for me to function as a person
and hence impossible to continue a meaningful life.
228 YOUR LAST
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Question
16:
Do you endorse more active
means of ending your life?
Do you believe you have a right to die?
Voluntary death? Merciful Death?
Answer 16: More Active Means of Ending My Life:
Voluntary Death and Merciful Death
I believe I have the right-to-die.
And I do not believe that I lose this right to determine the end of my
life
simply because I have become incapable of making further decisions
or fallen into a persistent vegetative state or other form of coma.
And all the powers I now have to make medical decisions
—including the right to make all decisions that will end of my life—
pass to my MCDC when it activates itself.
While I acknowledge the right of others to
hold different views,
my own views fall at the liberal end of the spectrum.
Even before laws concerning the right-to-die are liberalized,
I claim my right to decide the end of my life
under the right to privacy contained in the United States Constitution
and under the right to refuse treatment within the common law.
Once my MCDC has decided that my life as a person is
over,
and that it is no longer appropriate to attempt to sustain my life,
then I approve all possible means of shortening my process of dying.
In light of my wish to donate my remains as a living cadaver,
the best means of closing down my consciousness permanently
will be the preferred means of ending my life.
The time for giving the lethal anesthesia
or performing the neurosurgery to close down my consciousness
shall be coordinated with the medical professionals
who will receive my body after my death is declared.
This will also allow all who care about me
to be informed of the planned day and time of my death
at least a few days in advance.
Instead of leaving the moment and means of my death
to chance,
I am proposing and endorsing a rational decision to end my conscious
life
so that my body can be used to benefit others.
One way I see my death coming is the following:
When my MCDC has determined that my life as a person is over,
they should direct and authorize all necessary procedures
that will prepare my body to be used as a living cadaver.
First the drugs will be given or neurosurgery performed
to bring a permanent end to my consciousness
—preventing any chance of consciousness returning to my brain.
Immediately thereafter, my death shall be declared,
based on the criterion of permanent unconsciousness.
(This definition of death is explained in Answer 19 below.)
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 229
Then the transplant and tissue-recovery teams will swing
into action,
harvesting any and all organs for immediate transplant
into the bodies of patients waiting in adjoining operating rooms.
They can be prepared for transplant in advance
because the exact date and time of my death will be scheduled.
As said in Answer 14—about life-support systems—
the same machinery and procedures which formerly supported my life
will become (after my death is declared) organ-support systems.
When my death is declared, my remains immediately become
the property of the medical institutions involved.
And all costs associated with maintaining and using my organs
immediately shift to those medical institutions
and/or the parties who will benefit from the harvesting of my organs
and/or the use of my body as a living cadaver.
(This concern about who pays to maintain the living
cadaver
is not primarily an economic issue.
Ending the payment for medical care symbolizes the end of my life.
And the payer of my medical care is not responsible for
any costs incurred in disposing of the remains.
Legally the living cadaver will have the same status as a dead body.
And this should help all concerned to believe that James Park
really has died—and his remains have been donated to medical science.)
This is my preferred scenario for the end of my life.
But if conditions I cannot now foresee make such donations impossible,
this scenario illustrates my medical ethics for the end of my life.
When my life as a person is over,
my MCDC will devise and approve the best way
for my consciousness to be permanently closed down
and for my remains to be used for the benefit of others.
And even if nothing can be used from my body,
then the preferred means of death
can be as active as described in this scenario.
All the authority I now possess to end my life and dispose of my remains
passes to my MCDC when I cannot exercise that decision-making power.
The above way of ending my life assumes
that I will not be aware enough to participate in planning my death.
But I might remain an autonomous person up to my last day.
In that case, my death will be described more accurately
as a voluntary death (planned and decided by me) rather than
a merciful death (decided and planned by others appointed by me).
Allow me to explain more fully my philosophy of the
right-to-die.
I divide this right to self-determination into 3 sub-categories:
voluntary death, assisted voluntary death, & merciful death.
230 YOUR LAST
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Voluntary death means choosing the time and mode of
my own death.
But voluntary death differs from irrational suicide in four ways:
(1) Voluntary death is helpful; irrational suicide is harmful.
(2) Voluntary death is rational; irrational suicide is not rational.
(3) Voluntary death is carefully and compassionately planned;
irrational suicide is often capricious, triggered by a sudden
life-crisis.
And irrational suicide is usually committed thoughtlessly,
without making the death easy for others.
(4) Voluntary death is regarded by others as admirable and commendable;
irrational suicide is almost always regarded as tragic and regrettable.
(Further discussion of this distinction will be found in my on-line
essay:
Will
this
Death be an “Irrational Suicide” or a “Voluntary Death”?)
Assisted voluntary death means choosing one's own
death
but needing cooperation and perhaps assistance from others.
As proved by the many earlier editions of this Advance Directive,
created years before this philosophy was needed for my own death,
I have planned my death well in advance,
taking other people's feelings into account.
I will be ushered into death by others who agree with me
that the proper time to end my life has arrived.
I think that my death will attract more admiration than regret.
It will be an assisted voluntary death
if I cannot accomplish all of the steps by myself.
Merciful death means choosing the time and mode of
death for others
after weighing all the relevant factors,
including the prior wishes expressed by the person whose death it is
—for instance in an Advance Directive like this one.
When the dying individual has already become incapable
of participating in the decision to end his or her life,
then the decision must be taken and the actions performed by others.
In writing Advance Directives for Medical Care,
we can state the conditions under which we want merciful death (if
ever).
I fully endorse all three forms of the right-to-die.
My longest book How to Die:
Safeguards for Life-Ending Decisions
suggests a system of careful documentation
to make sure that the right-to-die is not abused by anyone.
When death by choice becomes a completely open process,
making the reasons evident to everyone involved,
the right-to-die should be accepted even by people initially opposed.
I expect complete acceptance of the right-to-die
to have been achieved (in the Western world as least)
sometime in the middle of the 21st century
—perhaps by the time I will claim my right-to-die.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 231
Question
17:
Under what conditions would
you request death?
Answer 17: The Conditions under which I Request Death
This Answer stands as a good summary of
the most important points in this Advance Directive for Medical Care.
(As a point of historical interest,
this is the ninth version of this statement, which was created
even before I wrote my first complete Advance Directive.)
I, James Leonard Park, expect and hope that I will
be able to make
my own decisions about the proper time and mode for my death.
Thru-out my adult life, I have affirmed my right to choose my own death,
as illustrated in my essay "The Case for Voluntary Death",
published in the Minnesota Daily in 1976.
But should I become unconscious (either temporarily
or permanently)
or otherwise incapable of making medical decisions for myself,
I have established a Medical Care Decisions Committee,
which is empowered to make all medical decisions for me
—including all decisions that will bring my life to an end.
In addition to their own good judgment,
they shall take into account my settled values concerning life and
death.
I have always identified with my life as a person
rather than believing that my body was my self.
(Of course, my body has been the only carrier of my person.
And when my body can no longer sustain life,
I will certainly be dead as a person.
The person James Park cannot exist independent of my body.)
But it might happen that I will die as a person
before the complete death of my body.
My criteria for personhood are explained in detail
in my small book When Is a
Person? Pre-Persons & Former Persons.
The four criteria that define when I am still a person are:
(1) consciousness, (2) memory, (3) language, & (4) autonomy.
(1) Consciousness and self-consciousness are central
to personhood.
If I am unconscious most of the time, my life as a person is mostly
over.
(2) Memory enables me to know who I am and who other people are.
If I have lost most of my memory,
disconnecting me from everything that has been meaningful in my life,
this would be good reason for my MCDC to consider merciful death for me.
(3) Language is the main tool by which I have conducted my life.
If my mind can no longer process language, meaningful life might be
over.
(4) Autonomy is the power to plan and conduct my life.
If I can no longer organize and direct my own life,
perhaps I have lost enough of my personhood
to make merciful death the best option.
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If I have lost most of these capacities that define
persons,
for instance, if I am in a coma or a persistent vegetative state,
and if there is little hope of recovering my powers as a person,
then I should be considered essentially dead
—or at least a good candidate for the merciful death I hereby request.
I prefer a peaceful and painless death by anesthesia
—the least destructive means of death—
which will leave my body in the best shape
so that my organs can be transplanted into other people
and/or my whole body used as a living cadaver
for practice surgery, anatomical study, medical experiments, etc.
Anyone who wants to keep my body 'alive' after I am dead as a person
stands in fundamental disagreement with my philosophy of life.
During my adult years, I have valued my existence as
a person.
If the life of the person who was James Park, who read books,
shared ideas, related lovingly and deeply with many people,
who wrote books and sought to help others to become more Authentic
and more aware of our Existential Predicament
—if this person no longer exists and does not seem likely to reappear,
then whatever physical life remains should be mercifully shut down.
This situation might arise from a stroke that wiped
my memory clean.
If my body is ever inhabited by a consciousness that has no recognition
of the purposes and values pursued by James Park,
and if that person does not wish to live
or is not capable of making a life-or-death decision,
then my body should be anesthetized and used as a living cadaver,
as I have explained more fully in my essay
"The Living Cadaver: Medical Uses of Brain-Dead Bodies".
If I can no longer be the person I have chosen to be,
then I should be considered dead, by my own definition:
The person James Park will have ceased to be.
You who survive me will be charged with answering this question:
Does this body contain the person James Park
or has that person ceased to be,
so that we can now lay to rest his physical remains?
If, however, there is a reasonable hope
that I might be returned to being a full person,
to pursue the purposes I considered important in life,
then I should receive the medical care
that can restore me to full personhood.
My philosophy of life and death has never favored death over life.
I want to keep living as long as I can have a meaningful life.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 233
Question
18:
Do you wish to
join the
One-Month-Less Club?
Answer 18: The One-Month-Less Club
I am the founder and first member of the
One-Month-Less Club.
We are people who have chosen to live one month less
than we would under standard medical care.
The last month of almost everyone's life
is the most costly and the least meaningful.
Because I have been an informal member of the
One-Month-Less Club
for most of my adult life, I have striven to live well each day
so that the fact of losing one month off the end of my life
will not be a great loss to me or to anyone else.
Under normal conditions of standard medical care,
my last month of life would probably have a very low quality.
The doctors and nurses would be doing their best
to preserve any signs of life still left in my body.
But if I were forced to live thru that last month,
I would not be able to pursue any of the purposes of my life.
Because I have tried to live a meaningful life each week,
making the best possible use of all my healthy years,
dropping that last month in the hospital will be insignificant.
Interpersonally, I have organized my life so that
others close to me
will be able to complete everything important in a timely fashion
—instead of waiting until I am on my death-bed.
I will continue to put my interpersonal life into my healthy years.
We members of the One-Month-Less Club
will not simply wait (perhaps in pain)
for the Grim Reaper to come and take us away.
We will go out to meet him on the road when the time comes.
And whenever we remember, during the healthy years of our lives,
that we have joined the One-Month-Less Club,
we will encourage ourselves to live now
instead of postponing important parts of our lives until later
—which might make us want to cling to that last month of life
because we have so many projects we never completed
—so much living we kept postponing until it was too late.
If we live well, 'checking out' one month early
will be good for us and for those who love us.
And when we join the One-Month-Less Club in our Advance Directives,
all the people who care about us will be informed well in advance
that we do not intend to cling to 'life' to the last possible moment.
This should help us all to put first things first, to live well now
—and then to die well at the most appropriate time.
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Question
19:
Which definition of death
should apply to you?
Answer 19: Permanent Unconsciousness
is My Preferred Definition of Death
I expect that permanent unconsciousness
will be accepted as a definition of death sometime in the 21st century.
If I die before such a new definition is accepted,
I hereby state that I want the permanent cessation of consciousness
to be counted as equivalent to death in my case.
Thus I might be asking for a departure from standard medical practice.
But the fact that I have given this permission in advance
should make it possible for at least one doctor to declare me dead
on the basis of permanent loss of consciousness
before this criterion is accepted as a standard definition of death.
The reason it is especially important to use this definition
in my case is that I want to donate my body as a 'living cadaver',
as explained in the next two Answers.
Here is my argument for accepting the end of
conscious life
as a satisfactory definition of death:
From my point of view, being permanently unconscious
—not being able to have a single thought or feeling,
being in an irreversible coma—is equivalent to being dead.
If I have fallen into a coma from which I will never awaken,
or if surgical or chemical means have been applied to my brain
to prevent the return of consciousness,
then I, as the dead person, cannot distinguish this from death.
Some biological processes might continue, but I will be dead.
And those who have known me while I was alive
should have no problem accepting the fact
that once my consciousness has gone out forever,
the person who was James Park is completely, permanently dead.
By signing their agreement to this Advance Directive,
the members of my Medical Care Decisions Committee
state that they agree to have this definition of death applied to me
and that they will raise no objections to using this definition in my
case,
even if it has not yet become general practice within medicine.
According to some understandings, a persistent
vegetative state
is not the quite same as being permanently unconscious.
If I am in a persistent vegetative state, my brainstem still works,
regulating my heartbeat and breathing,
even tho my life as a person is completely over.
If I will never emerge from PVS, I am clearly a former person,
having lost all four of the marks of personhood:
consciousness, memory, language, & autonomy.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 235
If I am in PVS and if this state cannot be defined
as being dead,
then my MCDC should authorize surgical and/or chemical measures
that will guarantee that I will never return to consciousness.
Then my death can be declared on the basis of permanent unconsciousness.
If my plan to donate my body as a living cadaver is
not possible,
then a persistent vegetative state
shall still be a sufficient condition for granting me a merciful death.
I direct that all life-supports be withdrawn,
including nutrition and hydration (food and water),
and that the last vestiges of biological life be permitted to disappear.
Restating my medical ethics: If I come to the end of
my life
before the criterion of permanent unconsciousness
has become an acceptable definition of death,
I request that my physician go beyond
the "ordinary standards of medical practice" and declare me dead
if for any reason I enter a coma from which I will never awaken.
If I am in a state close to permanent sleep,
my medical ethics say that I should be declared dead
and my remains used as described in the next two Answers.
For a period of some years before permanent
unconsciousness
is generally recognized as a definition of death,
good medical practice will permit using this criterion
for declaring death if there are good reasons for using it.
Organ transplantation and other uses of bodies of former persons
who are permanently unconscious will be accepted as good reasons
for such a departure from standard procedure.
This choice expresses my personal medical ethics.
And following these explicit instructions just in my case
will not set a precedent for declaring anyone else dead.
I request (with completely informed consent) this
exception
that I be declared dead when I become permanently unconscious.
And this choice of a definition of death for me
is endorsed in their separate statements
by the members of my Medical Care Decisions Committee.
These five people are the only persons
who have any possible standing to object to using this definition.
Therefore, all worry about lawsuits is removed.
If the doctor wishes an additional statement of immunity
from any legal action as the result of following this Advance Directive,
my Medical Care Decisions Committee will sign
whatever documents are needed to guarantee that there will be
no adverse consequences for any doctor who uses
permanent unconsciousness as a criterion for declaring James Park dead.
236 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
PART V. Disposition of My Remains
Question
20:
Do you wish to donate your
organs
to other persons who need them?
Answer 20: I Wish to Donate My Organs So that Others Will Live
After I am finished with my organs,
I hope that they will find new homes in the bodies of other people
whose original organs have (for some reason) ceased to function.
(And I might even need to receive an organ donated by someone else.)
As I get older my organs also get older.
And with each successive revision of this Advance Directive,
I will have to ask whether my organs might still have
enough life in them to be worth transplanting into others.
But for the present, if I die within the next few
years,
there is a very good chance
that many of my organs could be transplanted.
To facilitate the removal of my transplantable organs,
I have decided to have my life come to an end by anesthesia
(as described in Answer 19 of this Advance Directive).
I would like to decide the timing of my death if I am still capable.
My MCDC will decide the exact time if I am no longer able to choose.
The timing of my death should be coordinated with
the transplant team
that has located the best recipients for my transplantable organs.
After I am declared dead on the basis of permanent unconsciousness
(as described in Answer 19 of this Advance Directive),
my body becomes the property of the medical institution
that has agreed in advance to transplant my organs.
And my unconscious body might be transported to the transplant location
or the recipients can be gathered near the place
where my life will be brought to a peaceful end.
When everyone is ready, both James Park (the donor)
and the recipients can be given general anesthesia.
My anesthesia will be intended to render me permanently unconscious
—without the possibility of ever having another thought or feeling.
Then I will be declared dead on the basis of permanent unconsciousness;
and the transplants can take place.
This plan for donating my organs departs only a
little
from procedures already followed for transplanting human organs.
The main difference is that I approve of planning and timing
the exact moment of my death by anesthesia
so that the maximum benefit for others can be achieved.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 237
Question
21:
Will you donate your body
for use in medical science or education?
Answer 21: I Wish to Donate My Whole Body as a Living Cadaver
I realize that the requests I make in this Answer
depart significantly from current standard practices
in medical research and the education of doctors and nurses.
And I realize that ethics committees will have to discuss
this form of anatomical gift before it can take place.
Such discussion could even take 10 or 20 years.
As I age, my organs will be less useful for transplant into living
persons,
but my body will still be useful for anatomical study, practice
surgery, etc.
I have already described my wish to be declared dead
on the criterion of permanent unconsciousness (Answer 19).
In my case, this might be a permanent unconsciousness
that was intentionally created (with this explicit approval from me
and/or from my Medical Care Decisions Committee).
The medical team that has agreed to use my remains as a living cadaver
will decide which means of rendering me permanently unconscious
will correlate best with the uses they have planned for my body.
In any case, irreversible measures must be taken to assure
that James Park will never have another moment of consciousness
—not even on the level of dreaming.
When my death is declared, my remains become the
property
of the medical institution that has agreed in advance
to accept this unusual form of anatomical gift.
No further approvals need be sought from my MCDC for using my remains.
And all costs from the moment of death
will be borne by the medical institution itself,
which, of course, may pass such costs on to others
who will benefit from the use of my body as a living cadaver.
This transfer of ownership and the costs for maintaining
the remains is practical but also symbolic.
The source of funds for my health care will not pay
for maintaining the living cadaver after I have been declared dead.
The people who knew me during my life
should go ahead with their plans for my memorial, etc.
just as they would if I had died in a more ordinary way.
My survivors only retain the right to receive my
cremated remains
after my body has fulfilled its purpose as a living cadaver
(possibly followed by further use as a dead cadaver).
The cremated remains might be delivered to my survivors
a year or two after my death.
238 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
My essay "The
Living
Cadaver: Medical Uses of Brain-Dead Bodies"
details several ways in which a living cadaver might be used.
To give a sense of my meaning, I will name a few here:
(1) organ and tissue transplantation (discussed in Answer 20);
(2) testing of new surgical procedures;
(3) practice surgery for surgeons-in-training;
(4) all forms of medical research too dangerous for living people;
(5) testing of new drugs on diseases intentionally given to my remains;
(6) anatomical study of a body that has some vital functions.
The living-cadaver team will have planned and scheduled
all uses in advance, in order to get maximum benefit from my remains.
I realize that this plan goes beyond standard
medical practice
of the time in which this plan was first created.
But progress in medical ethics takes place
when someone suggests new medical policies or procedures
that have the potential of doing more good than harm.
Since I will have been declared dead,
I will have no further interest (in the legal sense)
in what happens to my physical remains.
And since I will be dead, nothing can harm me as a person.
Only after-death harms would be possible
—such as the desecration of a dead body or the violation of an estate
will.
I would not expect anything like that to happen,
since the living cadaver will be kept in a hospital bed
while it is being used to benefit medical science and education.
Several people might be using the living cadaver at once.
But they can be less worried when operating on a brain-dead body
than when operating on a living person,
because they know a cadaver will not suffer if they make mistakes.
Once again, agreement to accept this gift of a
living cadaver
does not establish a new precedent.
This could be an exception allowed by the institutional ethics committee
because it was explicitly requested by the deceased (me)
and completely approved by my Medical Care Decisions Committee,
who are the only people with any possible standing to object
to using my body as a living cadaver after my death.
The members of my MCDC have all agreed in advance with this plan.
And they have put their approval into writing.
(See Appendix A for statements of agreement from my MCDC.)
The fact that this Advance Directive was
composed and revised by me
shows that my thinking is clear and rational.
This gift of my body as a living cadaver should not be rejected
because it was not properly authorized by me
and by my Medical Care Decisions Committee.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 239
Those who agree to accept this unusual anatomical
gift
need not think they are changing their own standards of medical ethics.
They might decide to see it as a permissible exception to the rule,
allowed because of my explicit legal authorization
to use my remains as a living cadaver.
Because I make this very unusual request
to donate my body as a 'living cadaver',
I would like to meet the team that will be coordinating
the use of my body after I am declared dead.
This consultation could happen while they are evaluating
the best ways to use my living cadaver.
Such discussions should also benefit the living-cadaver team,
especially if they have any doubts about this kind of donation.
I want all of them to be completely convinced
that they are doing the right thing,
even tho it goes against medical tradition
and breaks new ground in medical ethics.
They should all read my essay on the 'living cadaver'
and ask me any questions they like
to make sure that this is a free, rational, & wise gift,
not some morbid fascination with death and cadavers, etc.
I am the sole owner of my body.
And after my death is declared according to my wishes
on the basis of permanent unconsciousness or brain-death,
I want my remains to be used by medical science as a living cadaver.
Question
22:
What other plans have you
made for your remains?
Answer 22: Final Disposition of My Remains
After my remains have been put to the best use
in organ donation and/or as a living cadaver,
then whatever remains will be cremated by the medical institution
and delivered to the chairperson of my Medical Care Decisions Committee
(or another member if the chairperson cannot receive my ashes).
We realize that this might occur a year or two after my death
because my body might also be used as a normal dead cadaver
after it has lost all of its vital functions.
My ashes shall be buried in a place selected by me
and known to the people who will do the burying.
I hope these choices will create a peaceful and appropriate end
for a long and meaningful life,
followed by a few months of other uses of my body after my death.
And if some of my organs survive in other people, so much the
better.
240 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
PART VI. Philosophical-Spiritual Perspectives
& Readiness for Death
Question
23:
What philosophical, ethical,
or religious beliefs
do you hold that are relevant
to your medical care and other end-of-life decisions?
Answer 23: Respect for My Life as a Person;
My Death with Dignity and Meaning
I believe in the dignity of the human person.
And I define my own personhood as that period of life
when I have consciousness, memory, language, & autonomy.
If and when I cease to be a person according to these criteria,
then the proper respect for me as the person I used to be
would be to carry forward my wishes about bringing my life to a close.
This philosophy is expressed more fully in my book on personhood:
When Is a Person? Pre-Persons
& Former Persons.
Answer 17 of this Advance Directive,
"The Conditions Under which I Request Death",
is another place where my philosophy of life and death will be found.
Readers who wish to explore even more deeply might
read:
How to Die: Safeguards for
Life-Ending Decisions, my longest book.
I hope that most of these safeguards are fulfilled
in the death-planning process that draws my life to a close.
I do not believe in an immortal soul.
Rather I believe in the human spirit.
The capacities of our spirits emerge gradually
as we become more fully persons:
self-awareness, altruism, self-transcendence, freedom,
creativity, love, awareness of our Existential Predicament,
& glimpses of joy and fulfillment.
These are explored more fully in my small book
Spirituality without Gods:
Developing Our Capacities of Spirit.
I believe these capacities of spirit gradually
disappear
if we have a slow decline into death.
In short, our spiritual capacities depend on our human minds.
As our brains deteriorate, we lose our former spiritual capacities.
If I am unconscious for some period of time before I
am declared dead,
the end of my life as a person of spirit
can be confidently dated as the last day I was conscious.
There is no way to save my spirit
except by saving my brain and its functions as a mind.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 241
Thus respect for the person I was
should not take the form of an exaggerated respect for my body
after I have become a former person,
after I have entered a persistent vegetative state,
after I have become permanently unconscious, or
after my body shows no further signs of life.
I will be happy to be remembered as the person I was,
including the spiritual capacities I expressed during my life.
But I am quite confident that after consciousness has ceased
(and perhaps some time before the end of conscious life),
my life as a person of spirit will also be completely over—forever.
People who believe in an immortal soul might be
expected
to want to keep their bodies alive longer than I would
—perhaps because they believe
the soul wants to stay on Earth as long as possible.
But such metaphysical beliefs do not apply in my case.
And I would never choose for myself any medical treatment
based on the assumption that I have an unkillable soul.
As I continue to read, think, & write about
these issues,
future editions of this Advance Directive for Medical Care
might include or refer to new statements that could have a bearing
on this philosophical section of my 'living will'.
In other words, my philosophy of life and death
will probably continue to grow and mature.
And I have every right while I remain a full person
to change my mind about anything
and to revise and extend this Advance Directive.
I expect those who care about me at the end of my
life
to respect my wish to have a dignified and meaningful death,
not a drawn-out, losing struggle against biological collapse.
I want to be remembered as a living person,
who pursued meaningful projects during the best parts of my life.
The last weeks or months of terminal care
and preparation for death should be a brief period of closure,
which should not detract from the meaning of my life.
As explained in Answer 18, I am a member of the One-Month-Less Club.
I do not want to be kept 'alive' by whatever means possible
when my continued existence no longer serves my purposes as a person
—and no longer serves any purposes for other persons either.
When I have had as much meaningful life as possible
or when I rationally and compassionately choose to end my life,
please let me die.
242 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
Question
24:
Are you ready to die
now? If yes, explain.
If no, what preparations (practical, interpersonal,
spiritual)
would make you more ready to die?
What projects do you wish to complete before you die?
Answer 24: My Readiness for Death; Living Well to the End
I seek to live so that I give my best time to my
most important projects.
Because I have constantly reminded myself that I am going to die,
I have attempted to construct every day and every year of my life
around the goals and values that make my life meaningful.
Living in the face of death has made me ready to die at any time.
When my life as a person comes to an end,
there will probably be many unfinished projects,
meaningful activities I could have completed with more time.
But because I give first place to my most distinctive talents and
meanings,
the unfinished projects should be somewhere lower in my priorities.
My encounter with colon cancer in 1993-1994
was a dress-rehearsal of my coming death.
In my case, the practical problems of drawing my life to an end
were not entangled in the psychological-emotional
and spiritual problems often associated with dying.
The 'fear of death' is really a complex of three
phenomena:
(1) the practical and medical problems connected with physical dying,
(2) the psychological-emotional fear of ceasing-to-be, &
(3) ontological anxiety, which underlies the first two dimensions
and which is one way of experiencing our Existential Predicament.
These three dimensions of the 'fear of death'
and my spiritual readiness for death are explained more fully in
An Existential Understanding
of Death:
A Phenomenology of
Ontological Anxiety,
which is also the 9th chapter of my book,
Our Existential Predicament:
Loneliness, Depression,
Anxiety, & Death
[Minneapolis, MN: Existential Books, 2006—fifth edition]
I am alive now in every sense. And I wish to
continue living
as long as my body will support my mind and spirit.
I am involved in many meaningful projects and activities:
reading, thinking, writing, publishing, loving.
I hope to live well to the end of my life.
Living in the shadow of death helps me to live more meaningfully.
Because of my spiritual preparedness and because I am living well,
I hope to be ready to meet my death when it comes.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 243
PART VII. State Form and Legal Status
Answer 25: The Minnesota Health Care Directive
The following answers conform to the Minnesota Form,
revised in 1998.
The preceding 24 Answers give more complete answers
to all of the issues raised in the Minnesota Health Care Directive.
And they will be referred to in my answers to this form.
The Minnesota Health Care Directive
begins with the full identification of the person making the directive:
NAME: James Leonard Park
ADDRESS: 1829 Third Avenue South, Apartment 218;
Minneapolis, Minnesota 55404-2185
PHONE: 612-871-7275
DATE OF BIRTH: {omitted from this version}
SOCIAL SECURITY NUMBER: {omitted from this version}
(See Answer 1 for a full explanation of the scope of this Directive.)
PART I: Naming An Agent
I have created a Medical Care Decisions Committee
(MCDC).
Its members are named and the powers and duties of this MCDC
are explained fully in Answers 2 and 3 above.
PART II: Health Care Instructions
My medical ethics and health care instructions
are contained in all of the Answers of this Advance Directive.
See the table of contents at the beginning (p. 195-196) for specific
issues,
some of which are asked for here in the Minnesota Form,
such as pain control, life-prolonging treatments,
when to write Do-Not-Resuscitate orders,
& the costs of my health care.
The Minnesota Health Care Instructions Worksheet
also asks about religious and spiritual beliefs.
My comprehensive answers to these questions
are contained in Answers 23 & 24 above.
I discuss quality-of-life issues in Answer 17.
My preferred place and means of death are discussed
in Answers 8 & 9.
My wishes about organ donation, etc. appear in
Answers 20 & 21.
Making This Document Legal
This document is made a legally-enforceable directive
by the signature and witness page below.
244 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
Answer 26: Legal Status of this Advance Directive for Medical Care
FOUR LEGAL FOUNDATIONS FOR THIS ADVANCE DIRECTIVE
1. The Minnesota health care directive statute,
Minnesota Statutes 145C,
grants the authority to make such an Advance Directive.
And the requirements of that law are fulfilled in Answer 25.
This law also grants immunity to any medical personnel
who follow an Advance Directive in good faith.
It is the intent of this comprehensive Advance Directive
to extend that immunity to any and all actions requested in this
'living will',
which might not be explicitly covered by the Minnesota statute.
2. Common law is that large body of legal
precedents
based on court decisions and long-recognized rights
that have been in force for centuries in those countries
that began with the English common law as their system of civil order.
The most relevant common law principle for this Advance Directive
is the right to refuse any and all medical treatments.
Even before the states began to pass 'living will' statutes,
the patient-physician relationship was voluntary from both sides.
This meant that each patient had the right to accept or refuse
any treatment offered by members of the medical profession.
Almost all states now have 'living will' statutes.
But they differ in detail from one another.
And the state legislatures always have the power to change such laws.
But state laws cannot take away the rights we, the people,
already have under common law.
Thus this Advance Directive is valid in every state
—first on the basis of what that state has in its statutes
and second on the basis of common law.
Where my Advance Directive goes beyond the specific provisions
of any state law, it depends on the common law—and the U.S.
Constitution.
3. The Constitution of the United States has been
found
to guarantee the right to privacy to all persons living in the USA.
The right to privacy was the basis the U.S. Supreme Court used
to overturn state laws banning or controlling abortion.
And Federal courts and the U.S. Supreme Court
might overturn state laws that formerly controlled the right-to-die.
4. The Constitution of the State of Minnesota
might also be found to be a relevant foundation for the rights
articulated and claimed in this Advance Directive for Medical Care.
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 245
IMMUNITY FOR MEDICAL PERSONNEL
By writing and signing their statements of agreement,
the members of my MCDC agree to all the terms of this 'living will'.
And they extend immunity to doctors and other medical personnel
who follow this Advance Directive and the choices made by my MCDC,
even if that immunity is not explicitly contained
in the law of the state in which any medical decisions must be made.
No other persons have any right to sue on my behalf,
so the approval of my MCDC for any medical treatment
or termination of treatment grants unchallengeable permission,
with immunity from all civil and criminal actions
for persons acting in good faith.
The 5 people who make up my Medical Care Decisions
Committee
are the only persons who have any legal standing to sue on my behalf
for non-compliance with this Advance Directive
or for any malpractice associated with my medical care.
All others who might claim standing to make a civil or criminal
complaint
are hereby explicitly excluded from any such rights
to sue or to complain in my name or in the name of my estate.
SEPARABILITY
If any part or parts of this Advance Directive are
found to be
invalid, illegal, impossible, inoperative,
incomprehensible, or otherwise non-applicable,
the rest of the document remains in force.
In other words, if some section or request is not possible to fulfill,
my whole Advance Directive is not thereby invalidated.
My Medical Care Decisions Committee is still empowered
to carry out my wishes to the best of their abilities.
For example, if this Advance Directive is challenged
because it goes beyond or contradicts
some provision of Minnesota Statute 145C
—the Minnesota Health Care Directive Law—
the powers of my Medical Care Decisions Committee
remains valid under the common law, the U.S. Constitution,
and the Constitution of the State of Minnesota.
No matter what laws might be changed in the future,
this Advance Directive remains my explicit instructions
to my agents concerning how medical decisions should be made for me
when I am not able to make medical decisions
or when I cannot express my wishes.
246 YOUR LAST
YEAR: CREATING YOUR ADVANCE DIRECTIVE
FOR MEDICAL CARE
SIGNATURE
AND WITNESS PAGE
FOR
JAMES LEONARD PARK’S
ADVANCE
DIRECTIVE FOR MEDICAL CARE
I, James Leonard Park, am the sole author
of this Advance Directive for Medical Care,
which comprises 54 pages, which are numbered 195-247.
One additional page names my Medical Care Decisions Committee.
It is a full and true representation
of my views on my medical care as of this date.
This edition of my Advance Directive does not substantially change
any of the provisions of earlier editions.
But if there is any question about my views, this edition shall prevail.
I retain the right to revise or revoke any part of this Advance
Directive,
while I remain a person capable of making medical decisions.
I have signed this Advance Directive for Medical Care
in the presence of the witnesses signing below.
Signed
Date
______________________________________________________________
Witnesses:
I certify that the declarant voluntarily signed this
declaration
in my presence and that the declarant is personally known to me.
I am not named as a proxy by the declaration,
and to the best of my knowledge, I am not entitled to any part
of the estate of the declarant under a will or by operation of law.
Signature of witness 1
Date
_______________________________________________________________________
Address of witness 1
_______________________________________________________________________
Signature of witness 2
Date
_______________________________________________________________________
Address of witness 2
_______________________________________________________________________
JAMES PARK’S ADVANCE DIRECTIVE
FOR MEDICAL CARE—7th Edition,
2019 247
Appendix A: Statements of Agreement
from the Members of My Medical Care Decisions Committee
I _________________, agree to serve as a member of
James Park's
Medical Care Decisions Committee as described in his Advance Directive.
I have read and discussed this document dated 2019.
I agree to carry out the provisions contained therein
to the best of my ability.
And I further agree to grant immunity
from any and all civil actions or criminal complaints
to any and all medical personnel who follow the instructions given by me
as a member of James Park's Medical Care Decisions Committee.
Signed _______________________________ Date ____________________
INTERNET BIBLIOGRAPHY
An annotated bibliography of the best books on
Advance Directives
will be found here:
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/B-AD.html
Most of these books are too technical or too simple
to be much help in creating your Advance Directive,
but if you want more stimulus for thinking thru these issues,
here you will find many more pages of reading.
If and when better books are published,
they will be added to this Internet Bibliography.
If several years have passed since 2019,
there are likely to be newer books reviewed here.
248 YOUR LAST YEAR:
CREATING YOUR ADVANCE DIRECTIVE FOR
MEDICAL CARE
Special additional page appears only in the official version of my
Advance Directive,
not in the printed version for publication.
The members of my Medical Care Decision Committee:
Created
1991; Revised 1997; 2001; 2004; 2006; 2013; 2019;