RIGHT TO DIE --MORAL AND ETHICAL ASPECTS---choosing how best to die

CHOOSING YOUR OWN PATHWAY TOWARDS DEATH

SYNOPSIS:

    I will die; you will die.
Each of us with have a particular pathway towards death.
In retrospect, those who survive us will be able to describe
the exact steps that we took—or were taken for us—
at the end of our lives, just before we died.

    However, if we grasp this truth about our own deaths,
we can make many important decisions about the exact pathways
by which we will approach our own deaths.

    Will we have good deaths? Will we have bad deaths?
If we could re-write the deaths we have known,
what would we change about the pathways to those deaths?

OUTLINE:

1. WE LEARN FROM THE WRONG PATHWAYS 'CHOSEN' BY OTHERS.

2. WE CAN EXPLAIN OUR IDEAL PATHWAYS TOWARDS DEATH
      IN OUR ADVANCE DIRECTIVES FOR MEDICAL CARE.

3. 18 SPECIFIC QUESTIONS WE SHOULD ANSWER
      TO CREATE OUR IDEAL PATHWAYS TOWARDS DEATH.

4. WE MIGHT DECIDE TO AVOID FUTILE MEDICAL CARE.

5. DISPOSITION OF MY REMAINS: THE MEDICAL USES OF A BRAIN-DEAD BODY.

CHOOSING YOUR OWN PATHWAY TOWARDS DEATH

by James Leonard Park

While we are in the middle of conducting our own lives,
we seldom do any planning for our deaths.
This means 'deciding' by default that we will be treated
by standard medical care at the end of our lives.
Perhaps we believe this will result in the best death possible for us.
But we might want to do some planning right now—in the middle of life—
for what will turn out to be the last year of our lives.

The pathways of our lives have many branchings.
Each time that pathway before us divides into two or more pathways,
we have to decide which road to take.
Sometimes we can back-track to try the other road,
but usually the decisions we make will lead us inevitably forward.
And if we made a bad decision in the past,
probably we cannot go back to undo it,
but we can make some course-corrections in the future
that will bring us back to the way we should have chosen in the first place.

1. WE LEARN FROM THE WRONG PATHWAYS 'CHOSEN' BY OTHERS.

    When we think about our own coming deaths,
we might be strongly influenced by deaths we have known.
Which deaths were worth emulating?
And which pathways towards death would we prefer to avoid?

    Usually what comes first to mind is the bad deaths we have known.
Perhaps we are haunted by scenes in hospitals we would want to avoid.
In modern times, death usually takes place under medical care.
But medicine was invented to prevent death
—or at least to postpone death as long as possible.
This means that at least some of the suffering at the end of life
is due to the standard procedures of the medical profession
and the modern hospital.

    There are routine ways of treating all patients.
Whenever there is some procedure that might help the patient,
that treatment will be considered and possibly tried.
Sometimes there are so many specialists dealing with various problems
that no one professional is considering the best interests of the patient.

    This leads to an end-of-life pattern of endless tests and treatments,
each of which might have had some purpose
if that particular disease or condition were the only problem.
But very often as we approach the end of our lives,
we are beset by a host of medical conditions.

    Curing one problem, such as cutting out a cancerous tumor,
only leaves us in the hospital facing a series of other health problems.
If anyone had really summed up our whole health situation,
we might be more inclined to choose less aggressive treatments
because we know that even if the cancer is 'cured',
we will survive to face the remaining array of illnesses and problems.

    If we could read our lives backwards, beginning with the last page,
then we would know exactly what killed us.
Then in the light of that last chapter,
we could make wiser decisions for the middle chapters.
For example, we would reject expensive and invasive medical treatments
if we knew that we would die of something else within a few months anyway.

2. WE CAN EXPLAIN OUR IDEAL PATHWAYS TOWARDS DEATH
     IN OUR ADVANCE DIRECTIVES FOR MEDICAL CARE.

    Probably the best place for each of us to explain
how we wish to be treated at the end of our lives
is in our comprehensive Advance Directives for Medical Care.
Such legal documents permit us to include as much detail as we want
concerning all issues related to our last days alive.

    When we have decided how we want to approach our deaths,
we can describe our ideal pathways in our Advance Directives.
There is no way to be certain that our plans will be followed,
but at least we can explain what we would want if it becomes possible.

    If we give no guidance about our preferred pathways,
then we will be given standard medical care at the end of our lives.
Normal and customary terminal care will be provided.

    Here is an introduction to the basic concept of a comprehensive Advance Directive:
Advance Directives for Medical Care:
24 Important Questions to Answer:
http://www.tc.umn.edu/~parkx032/CY-AD.html.

3. 18 SPECIFIC QUESTIONS WE SHOULD ANSWER
TO CREATE OUR IDEAL PATHWAYS TOWARDS DEATH.

The following Questions for a comprehensive Advance Directive
will create specific pathfinding directions for us in our last year of life.
Each Question is linked to a more extensive explanation on the Internet.
This enables any reader of this essay to explore any Question more deeply.
(The Questions keep their original numbering system from Your Last Year.
All 24 Questions—including those omitted below—are found here.)

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?

     When choosing our own pathways towards death,
we should deal with qualify-of-life issues such as degrees of mental decline.
We might define being a human person by the following four traits:
(1) consciousness, (2) memory, (3) language, & (4) autonomy.
Then, as we lose such marks of personhood,
we might direct some specific actions to be taken or omitted,
which will define our chosen pathways towards death.

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?

Another way to include quality-of-life considerations
would be to ask about the likely process of personal decline:
When should our proxies make life-ending decisions for us?
For example, if we become former persons
with only some remnants of biological life in our bodies,
should our proxies 'pull the plug'?

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

    One set of possible problems could affect our brains,
so that we lose most of our former selves.
We can project specific plans for ourselves
if we ever suffer the degrees of mental decline we describe.

Question 7: If you are in serious pain, what do you want done?

What amount of pain do we now believe
we would be able to tolerate at the end of our lives?
When such a time comes, when pain is a serious issue,
we would normally have the right to change our minds about pain-control.
But we will help to establish our own pathways towards death
if we explain as fully as we can now
just how we expect to handle terminal pain if it happens.

Probably our chosen pathways will tolerate a certain amount of pain,
especially if we can foresee some relief in the future.
But if pain will be our constant companion for the rest of our lives,
will we choose a shorter pathway towards 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?

    Many pathways towards death include some time in a nursing home.
How do we feel about nursing homes now?
Have we selected a nursing home that would be our top choice?
If we agree to live in some sort of assisted-living arrangement,
how long should such an arrangement continue?
What limits on such terminal care would we establish now?

    If our possible pathways towards death were a board game,
how long would we tolerate being in a nursing home?
And how would the decision be made to move on towards death?

Question 9: Where would you prefer to die?

Not all of us will have a choice about the best place to die,
but if we were able to choose, where would we like to meet death?
And if that place is not possible,
what would be the next best location for death?
Just as we were all born at a specific spot on the planet Earth,
so each of us will die at a specific address in a certain city or town.

Question 10: Will you put financial limits on your terminal care?

Terminal care often absorbs huge amounts of health-care dollars.
Sometimes the costs might not seen commensurate with the benefits.
So, how would we decide about the financial dimensions
of our last year of life?

Question 11: How much do you want to know
    about your medical condition and prognosis?

    Some of us might wish to be kept in the dark
about our coming deaths for as long as reasonably possible.
We just do not want to be forced to confront our coming demise.
But others of us might like to participate as fully as possible
in the end-of-life decision-making that will inevitably happen.

    We will help to define our own chosen pathways towards death
by saying while we are still in good health
how much we want to know about the process of dying
when that unavoidable time comes.

Question 12: When should all curative treatments be ended?

Medical care is primarily devoted to curing patients
who have diseases or other conditions,
some of which might cause death.
After taking part in many medical procedures aimed at cure,
we might decide to change the purpose of our medical care
from cure to comfort.
If we cannot be cured, at least we can be made comfortable.

Who will decide to change course in the hospital?
And how will any such decisions be reached?

Question 13: When should Do-Not-Resuscitate orders
    be written for you?

    Somewhere on our pathways towards death, it might be appropriate
to have our doctors write Do-Not-Resuscitate orders for us.
This will mean that the crash-cart will NOT be called
if one of our major bodily systems fails.
Do-Not-Resuscitate is not a life-ending decision.
It does not mean end all treatment.
Some people who decide not to undergo another resuscitation
go on to recover well enough from their disease or condition
to be able to return to their homes.

    But if good medical advice tells us
that we could not survive another heart-attack, for example,
then now might be a good time to have those DNR orders
entered into our medical charts.
This will be a major decision, having profound implications
for our chosen pathways towards death.

Question 14: How long should you be maintained by life-supports?

While we are still in possession of all of our mental faculties,
we should make some decisions about life-support systems.
If we do not put some limits on such medical interventions,
we will automatically be put on life-supports
when our vital organs begin to fail.

And if we are put onto life-supports,
should we specify how long the supports should remain in place?
If we do not recover in one week or one month,
should the life-supports be removed?

Question 15: Should food and water ever be withdrawn or withheld
in order to shorten the process of your dying?

It used to be quite controversial to discontinue food and water
with the knowledge that this would inevitably lead to death.
But now this is a choice that we can all make
in the process of defining our own pathways towards death.
How do we feel about medical dehydration as a means of death?

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?

    And in some states of the USA and other countries of the world
we now have the legal option to choose more active means of death.
Just what degree of choice should we exercise at the end of our lives?
And if we can no longer choose for ourselves,
do we give our proxies the authority to choose death for us?

Question 17: Under what conditions would you request death?

Even more explicitly, we might have occasion to request or approve
some measure that will certainly bring death.
How might we come to this decision-point
in our process of moving ever-closer to death?
If we understand our likely decline into death,
what sign-posts would suggest it is time to request death?

Question 18: Do you wish to join the One-Month-Less Club?

Joining the One-Month-Less Club is definitely a way of selecting
one particular pathway towards death rather than the most common road.
Declaring ourselves members of the One-Month-Less Club
means that we plan to live well during the best years of our lives
so that we will not miss the last (perhaps pain-filled) month.

Instead of following the standard procedures of modern medical care,
we who are members of the One-Month-Less Club
have chosen to shorten our process of dying by about one month.

Question 19: Which definition of death should apply to you?

We might be surprised to learn that death can be determined
using different sets of criteria and tests.
So if we select one of the most liberal definitions,
we will be declared dead somewhat earlier in the process.
For example, do we endorse using the brain-death criteria
for the purpose of certifying our own deaths?

Question 23: What philosophical, ethical, or religious beliefs
    do you hold that are relevant
    to your medical care and other end-of-life decisions?

    Our individual philosophies of living and dying
will affect the choices we make about the last year of our lives.
The default choice might be no choice at all:
We will just do whatever is customary in our cultures.

    But we might have very individual ideas about how to meet death.
This would be a good place to explain our preparations.

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?

    The degree of our readiness for death will also have
a profound impact on what pathways we choose towards death.
If we are not yet ready to die, we might be able to explain
what projects we want to complete before death.

4. WE MIGHT DECIDE TO AVOID FUTILE MEDICAL CARE.

    Modern medical science has created an ever-expanding array
of tests and treatments for every possible problem.
And the standard medical choice has usually been
to keep applying medical methods until everything fails.
Only when the patient dies despite all medical efforts
do the medical professionals finally give up trying to cure.

     This defines a common pathway towards death.
When we come to the end of our lives,
we have little or no experience with the physical problems
the doctors are working hard to cure.
So, we easily agree to follow all medical recommendations.

    An alternative pathway towards death would define in advance
what would constitute futile medical care.
The medical professionals will be reluctant to discontinue treatment
because there is always a small chance that the patient will recover.

    But a more honest and open approach would weigh
the possible benefits against the known burdens of each treatment.
When we are facing our own deaths,
sometimes we are willing to bet on very long odds:
Even when the chances of success are very slim,
we might agree to a treatment that has usually failed in the past
when applied to patients with the same diseases.

    Our views of medical futility might change as we get older.
When we are young, hoping for many years of meaningful life,
we will accept the greater risks and burdens
of experimental medical treatments
because we have so much to lose if we die then.

    But when we know that we are approaching the likely end of our lives
because of known chronic diseases or conditions
or just because of advanced age,
we will probably be more cautious about approving medical procedures
that have only a small chance of doing more good than harm.

    Unless we make our values clear about futile medical treatment,
we might be treated-to-death:
We might receive every appropriate medical test and treatment.
And particularly when we are being treated by several specialists
(each perhaps concerned only with one bodily system),
no one of these professionals will take the larger view
of our whole process of living and dying.

    Another essay proposes creating a new medical specialty:
Medical Futility Monitor: Avoiding the Million-Dollar Death:
http://www.tc.umn.edu/~parkx032/CY-MFM.html.
This terminal-care physician with many years of experience
will be available for consultation when patients might be suffering
from too much medical care rather than too little.
If we so desire, we can explain that our own medical ethics
includes consulting such a neutral physician
to ask the question of medical futility.
We can declare in our Advance Directives for Medical Care
that we do not wish to be subjected to useless medical procedures.
And we can define how such a determination might be reached.
Who will decide when to 'pull the plug'?

5. DISPOSITION OF MY REMAINS: THE MEDICAL USES OF A BRAIN-DEAD BODY.

    One major problem I face in making my plans for death—and afterwards—
concerns what will happen to my body once I am dead.
I would like to donate my body for all possible medical uses,
including uses that might begin after my body has been declared brain-dead.

    Medical science and ethics has not yet accepted the possibility
of using a brain-dead body for testing medical procedures and practice surgery.
I have given my full permission for such uses of my body after I am dead.
And I hope that such a gift will be acceptable when it comes time for me to die.

    I have written another essay explaining this proposal in detail:
"The Living Cadaver: Medical Uses of Brain-Dead Bodies".
Perhaps something like this can appear in a medical journal
to start the discussion of how to accept such gifts.

Created November 15, 2011; Revised 11-17-2011; 11-22-2011;
1-6-2012; 2-24-2012; 3-17-2012; 6-12-2012; 7-28-2012; 8-25-2012; 3-19-2013

AUTHOR:

James Park is much closer to his death than to his birth.
He is an existential philosopher with special interest in end-of-life issues,
including how we might improve the process of dying.
Much more will be learned about him from his website called
An Existential Philosopher's Museum.

The above discussion of how to select the best methods of dying
is now Chapter 33 of How to Die: Safeguards for Life-Ending Decisions:
"Choosing Your Own Pathway Towards Death".

Would you like to join a world-wide cyber-seminar
that is discussing this book-in-progress?
See the complete description for this seminar:
http://www.tc.umn.edu/~parkx032/ED-HTD.html
Join our Facebook Group called:
Safeguards for Life-Ending Decisions:
http://www.facebook.com/home.php#!/groups/107513822718270/

Here are a few other on-line essays
closely related to choosing the best pathways towards death:

Losing the Marks of Personhood:
Discussing Degrees of Mental Decline .

Advance Directives for Medical Care:
24 Important Questions to Answer .

Medical Futility Monitor:
Avoiding the Million-Dollar Death

The One-Month-Less Club:
Live Well Now, Omit the Last Month .

Choosing Your Date of Death:
How to Achieve a Timely Death
—Not too Soon, Not too Late .

Choosing Your Own Pathway towards Death .

Completed Life or Premature Death?

One Million Chosen Deaths per Year?

Fifteen Safeguards for Life-Ending Decisions .

Will this Death be an "Irrational Suicide" or a "Voluntary Death"? .

Will this Death be a "Mercy-Killing" or a "Merciful Death"? .