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Preface
By C. Everett Koop, M.D. Sc.D.
T HE HORN FAMILY AND THE KOOP
FAMILY were inter-twined for
multiple reasons back in the 1940’s and 1950’s. I was a
surgical resident at the hospital of the University of Pennsylvania
and Dr. Robert C. Horn was the surgical pathologist. Naturally
we were thrown together a lot and became not only professional
colleagues but also close personal
friends, as did our wives. We had our children
at about the same time and it so happened that Robert Horn, Jr.
was born about the same time as
Allen Koop, the first child for both of us. So, I knew
Robbie Horn as he was then called as a growing child who was a
friend of my oldest son, Allen.
Our families were together frequently until my life took
me from the hospital of the University of Pennsylvania to the
Children’s Hospital where I became
the surgeon-in-chief in 1948. Dr. Horn moved
to the Henry Ford Hospital in Detroit where he was pathologist to
the hospital. He died
prematurely in 1976. As what frequently happens to families
who meet in academia, we grew further
apart geographically, and social contact
was more difficult. We did manage to see each other periodically
either in one another’s home or at
vacation spots. But in general, I didn’t know
much about what was going on inside the Horn family until I heard
that Rob Horn had contracted Lou
Gehrig’s disease or amyotrophic lateral sclerosis.
From that day to this, he and I have grown closer as I have come
to understand him and his
thinking and have learned to love and admire his family.
I am unabashedly pro-life and can argue that position from the
point of view of human rights,
civil rights, ethics, morals, and religion in spite of the fact
that my pro-life stand delayed my confirmation as Surgeon General
for eleven months. Rob Horn was
the first person who made me really under-stand personal
choice in these matters. Why? Because his choice was also mine?
No. But because although he made his choice he fully believes in
and supports other choices by
other people in the same position. During the years of
his disability, I think I detected Rob’s belief in his choice to
be reinforced constantly (in
spite of how he feels on what he calls the bad days). There are
so many things I’d like to discuss
with him but the difficulty he has in his role in
the conversation keeps me from it.
One question I’d like to discuss with Rob Horn is what role
did the attitudes around him
play in his decision. Perhaps he doesn’t know because he stresses
so much the role of the attitude of the afflicted on decision
making.
I think in pondering the situation, Rob — careful, analytical
thinker that he is would have
come to this conclusion: "I made my choice based on a number
of things but probably underlying them
all was the reality that no one around
me thought I had a life not worthy to be lived."
So, you who read this book who have cognitive skills and are of
sound body consider carefully
your attitude about those whom you call the disabled. Do
they detect by your words, your deeds, innuendo, overheard
conversation, body language,
that you have concluded their lives are not worthy to be lived?
This attitude is responsible for such an enormity of social
ills. Expressed before WWII
probably first by Binding and Hoche — a physician and a jurist
in Germany — led to the progressive
destruction of defective babies, the mentally
ill, those with tuberculosis, those with incurable diseases, and
eventually even amputees of WWI
who were no longer useful to the Reich. All because
they had, in the minds of Binding and Hoche, lives individually
and collectively not worthy to
be lived. It is probable that from these small beginnings came
the Holocaust.
The attitude — of life not worth living — led to the
Eugenics Movement in the United
States in days gone by, fueled the early interests in physician
assisted suicide, and led to the
support of euthanasia, and it certainly led to the
sad state of affairs in the Netherlands in regards to euthanasia
during the last decade or more.
When the frail, the infirm, the disabled, the chronically ill
realize that those around them
think their lives are not worth living, then they become depressed,
think of suicide, assisted suicide and euthanasia. None
of these remarks are to be construed as taking anything away from
Rob Horn’s decision. He remains the
most courageous person I have ever known.
I wish everyone who contemplates a decision such as Rob had to
make would read this book; even
more, I wish physicians ready with the easiest and quickest
way out would be compelled to read it. Had
I put this book together I would not have included a chapter by
Derek Humphrey whose requirements for
a life worth living are inordinately high
and one whose defeatist attitude is so far from being uplifting.
The fact that such a chapter is
here is one more tribute to Rob Horn and his fairness and
his deep understanding of choice.
My prayer for you, Rob, is that you will have the faith and
courage to sustain you, that
your family and close friends know in some way that they are
contributing to so many who have
accomplished what they thought was impossible
because of your example.
—C. Everett Koop, M.D., Sc.D.
"Partial
Text of Chapter"
1
The Power of Choice
The Right to Live
and the Right to Die
by Robert C. Horn III
One thing I do know: For me, a physical disability is
preferable to a mental one. In This
Far and No More, an ALS
victim, who eventually succeeded in
obtaining assistance to end her life, discusses the relative
"merits" of ALS and
Alzheimer’s. Although her internal debate remains inconclusive,
she writes wistfully of a disease
where you would not be aware of your steady physical
decline. Not me. My progressive deterioration was frustrating and
depressing in the extreme but I’ll
still take that over losing my capacity to reason,
to analyze or to remember. For, as the remarkable Dan Quayle —
remember him? — misspoke in one of
his innumerable verbal gaffes, "What a
waste it is to lose one’s mind." Indeed!
My mind, such as it is, has been my salvation. It still is. I
am no brilliant thinker but I
do enjoy the world of the mind, which is only appropriate for
someone who has spent his entire life
in school, either studying or teaching —
and always learning. I am interested in and curious about, an
unceasing flow of books I am
anxious to delve into and a number of topics I would like to
write about. My mind is my means of setting goals and striving to
achieve them.
My area of expertise and teaching responsibility as a college
professor was international
relations with a specialization in the Soviet Union and Soviet
foreign policy. Several common themes
ran through all the courses I taught. I
emphasized — ad nauseum, I am sure, to my students — one of
these in particular because it
is crucial to understanding how and why states in the
international arena behave and
interact with each other. It is also an essential consideration
in policy making. At least it should be — see, for example the
discussion in Robert S. McNamara’s
book on American policy in Vietnam, In
Retrospect: The Tragedy and Lessons of Vietnam.
It is equally important, I
think, in interpersonal relations. That theme or issue is
perception.
What the study of perception in world politics teaches is that
so-called "objective
reality" is actually the subjective perception and
interpretation of situations,
events, interests, and other actors by various decision makers in
every state and other entity. States
pursue their interests based on their particular perception
or view of reality. That, in turn, is shaped by the complex
interplay between a whole range of
factors and considerations, including geography,
economic strengths and weaknesses, history, ideology, military
capabilities, the political situation,
and various intangibles such as national character.
All of this means that in order to understand why the old Soviet
Union or the United States, or
Malaysia, Israel or Ecuador, took a certain foreign policy
action, you have to put yourself in "the other guy’s
shoes." You have to see
the situation through his eyes, understand that state’s
perception, its perspective.
So what, you might well ask? Is this somehow relevant to the
matter at hand or just some
extraneous lecture pulled from a musty file? Simply put, the
study of perception reminds us that
there are different ways of looking at the same
issue, event, problem, or situation. And this is true at all
levels of life, from the global
to the personal. The linkage between perception and living life
is that we act on what we perceive. In other words, our
perception, or perspective determines
how we live. This makes the discussion relevant for my life,
indeed for all of our lives.
What is my perspective, then, on my life? Not oversimplifying
the question very much at all,
it comes down to that old conundrum: Do I see the glass
as half full or half empty? Before the diagnosis of ALS, I had
always viewed the glass as half
full. I was an unabashed optimist, albeit tempered with
a certain degree of realism. But how about now? Admittedly, there
is not much to like, and a
great deal to find intolerable, about my current situation.
It is difficult, to say the least,
living under the sentence of a terminal disease, knowing
that I will not get better, only worse. I have to try to avoid
reflecting on longer-term concepts of time, such as
"never" or "forever." They are psychologically
painful. Physically, I’m a mess. I can’t do anything for
myself, have virtually no
workable muscles and can’t move. It is frustrating and maddening
to be so absolutely helpless and so
totally dependent on others. If my head
lolls to one side or the other, as it often does, it stays there
unless and until someone
notices and props it up again. If an arm slips off the armrest of
the wheelchair, it will just dangle by
my side until someone retrieves it.
There is ample evidence to think the glass is now at least half
empty. Well, it almost is, but
not quite. There is more to life than physical ability. There
are the mental, emotional and spiritual abilities or worlds to
consider as well. In these
worlds, I haven’t changed; I am still a vibrant, healthy and
independent person. I can think,
reason and analyze, remember, read, write, learn
and communicate. I can love, feel happiness and sadness, be
enthusiastic, get angry, have
highs and lows, feel joy. I can believe, hope and have faith.
This adds up to an extensive list of things I can still
"do" in spite of my disease.
This brings me back to the question of my overall perspective
of my situation. I am convinced
that what I have left is more valuable than what I have
lost. I believe that the things I can do are more important than
those I can’t. The key for my
psychological well-being is to focus on what I can do, my
abilities, rather than on my disabilities and limitations. To
dwell on the latter is to
wallow in grief and self-pity. Such wallowing is, for me,
sometimes unavoidable and
occasionally even necessary. But to concentrate on the former
is to invite optimism, achievement and
new opportunities.
All in all, I would say that the glass has lost some of its
water but it is still half
full. In the game of life, it
all comes down to how you keep score. If dying is losing,
then we are all losers because we are all terminal. The game makes
no sense. A far more meaningful
basis for scorekeeping is the quality of life. Quality
rather than quantity or longevity. How do you assess quality? That
very much depends on perception.
Quality is not determined by the
normal bumps in the road which every-one experiences.
In life, as the bumper sticker crudely but truthfully states,
"Shit happens." Indeed it
does! Mary Chapin Carpenter sings about the fact of
life that sometimes you’re the bat and sometimes you’re the
ball, that "sometimes
you’re the windshield and sometimes you’re the bug." I
have always liked the way
Judy’s brother, Don, has expressed this basic truth: "Sometimes
you eat the bear and sometimes the bear eats you." If you
can’t deal with the naturally
occurring and inevitable downs, the game of life is not for
you. You have to accept the bad with the good. Most of us have
learned to do that. We have
also learned that, as I told the girls on my soccer teams, the
test of our character is how we respond to adversity and setbacks,
losses, disappointments, and
defeats.
My response to ALS has run the emotional gamut. And gauntlet. I
have experienced despair, fear,
resignation, anger, and the dashing of unrealistic hopes,
amid a torrent of emotions. Some time ago, I arrived at an
acceptance of my condition and
of reality. My "psychological problems" now relate not
so much to my physical limitations or
the fatal nature of my disease per se, but
rather the additional responsibility I have caused to those
closest to me. On the other
hand, I have been surrounded by so much unconditional love
that it is overwhelming. Especially by Judy. But from so many
others, too. My favorite
passage in the Bible has long been from First Corinthians. Paul
wrote to the church in Corinth, "If I speak in tongues of men
and of angels, but have not
love, I am a noisy gong or a clanging cymbal." Well, no
gongs or cymbals here! Family and
friends are the instruments and reflection of
God’s love and I am continuously uplifted by them. They
demonstrate that, as Paul
further wrote, "Love bears all things, believes all things,
hopes all things, endures all
things." That passage means even more to me now. It has
become very personal and very real.
There have been studies which show that social support, as
opposed to social isolation,
positively correlates to longevity in terminally ill patients.
This doesn’t surprise me at all.
From my own experience, I can testify that social
support like Judy and I have received also positively correlates
to QUALITY of life. That is
even less surprising. Where
does all this leave me? Fundamentally, I believe that I am as
close as I will ever be to
achieving, or being granted, the serenity so eloquently expressed
in the Serenity
Prayer by Reinhold
Niebuhr: "God give us the grace
to accept with serenity the things that cannot be changed, the
courage to change the things
which should be changed, and the wisdom to distinguish one
from the other."
I love that prayer! I also think it fits my situation
absolutely perfectly. I HAVE to
accept my disabilities if I am going to keep on living. There is
no alternative, except, I
suppose, insanity and I am not quite ready for that. I definitely
REQUIRE the courage to do all that I am capable of in my life.
Finally, I also NEED to be able to
distinguish what I can change in my life from
what I can’t. All of this adds up to the need to focus on things
I can do and not to dwell on
those I can’t.
"Partial
Text of Chapter"
3
A World Perspective
on Euthanasia
by Derek Humphry
Derek Humphry founded the Hemlock Society in l980 and the
Euthanasia Research &
Guidance Organization in l993, both nonprofits providing
information about assisted dying, and working for law reform.
He has written 13 books, six
of them on euthanasia, the most famous being
the best seller, Final
Exit. His web site
is www.finalexit.org.
W ITHOUT DOUBT, ONE OF THE
GREAT SOCIAL debates early in
the new Millennium will be over euthanasia.
Is it moral? Is it necessary? Is it the ultimate civil
liberty?
During the last two decades of the old century it had become
plain that public opinion
worldwide favors the right to choose to die when faced with
unbearable terminal suffering — and
to get medical help to do so. The Judeo-Christian churches
reject the notion of artificially hastened death as vehemently
as they oppose a woman’s right to
choose an abortion.
Politicians of the right generally follow the church policy,
whilst those left of center
tend to support legalization of cautious, voluntary, justifiable
euthanasia. So
that we all know what I am talking about, let me first spell my
definitions of these
controversial words:
Passive
euthanasia: merely
means disconnecting an obviously dying person
from their life-support equipment and letting nature take its
course. This procedure is
either legal or acceptable almost everywhere.
Voluntary euthanasia is
when a patient asks for death to avoid further terminal
suffering. A doctor injects lethal drugs into a vein. Only legal
in the Netherlands and Japan in
certain circumstances.
Physician-assisted suicide is
when a dying patient asks a doctor for lethal
drugs to be taken by mouth. This is legal in the Netherlands,
Germany, Switzerland and the
American state of Oregon. As to
whether there is a right — legally or morally — is by no means
a purely American or Dutch
debate, although it’s in these two countries where debate
is loudest and progress has been made.
It has its own peculiarities in the United States connected to
the lack of homogeneity in a
huge US population of 265 million, absence of universal health
care, and a daunting number of states with a complex variety of
laws governing the subject. And
in the Netherlands social progress and reform in general
is so far out in front of the rest of the world that it is not
easy to use their actions as a
test model.
But there are also some forty organizations around the globe
fighting in their respective
nations to educate and legitimize some form of aid in dying.
With the exception of India, Colombia,
and Zimbabwe, they are all located in
highly developed countries. A
few fortunate nations do not have the problem — at least
legally. Switzerland’s laws
have permitted assisted suicide since l937 provided it is for
the relief of terminal suffering and
carried out for compassionate and altruistic motives.
The Swiss Academy of Medical Sciences opposes doctors actively
helping patients to die but it
nevertheless supports the principle and practice of ‘double
effect’ — administering morphine to relieve all pain despite
the risk of accelerating death.
In a population of seven million, there are between 100-120
cases of assisted suicide every year in Switzerland. Doctors carry
out some twenty of them; family
and friends effect the rest. There has never been a
prosecution.
Although discretion on this matter has been prevalent in their
country for a long time, many
Swiss realize that they possess a precarious right which opponents
would not hesitate to strike down. Consequently, in the last
twenty years two right to die
organizations have sprung up; the largest, EXIT, has more
than 60,000 members — three times the size of the Hemlock
Society in the USA.
"Partial
Text of Chapter"
9
The Oregon Death with
Dignity Act
Fact versus Conjecture
by Peter Goodwin, M.D.
INTRODUCTION
The debate about physician-assisted suicide (PAS) has been
intense and adversarial. An
issue so important, so charged with emotion, and so at variance
with long held ethical and dogmatic
beliefs must continue to generate intense
discussion in a democratic society such as ours. However, that
part of the discussion which
deals with the practical application of PAS should be factual,
and based on the results of implementation of the Oregon Death
with Dignity Act (The Act). We now
have two years of experience since implementation,
and facts should now supplant conjecture.
I intend in this essay to explain
why I was in the forefront of efforts to make
PAS a legal option for those terminally ill patients who qualify
under the Act. I shall discuss
the provisions of the Act and describe my involvement in
caring for terminally ill patients who requested PAS in conformity
with the Act. I shall show how that
experience, supplemented by an analysis of
the Oregon Health Division’s report of the results after two
years of implementation of the
Act, confirms that the Act has been measurably successful.
PERSONAL
I have been a family physician for almost fifty years. At my
medical school care of the
dying had no defined place in the curriculum, and in most schools
in the U S the same was true until
very recently. My ignorance inevitably led to
errors. They were errors of neglect and of avoidance, of
inadequate treatment of
symptoms, especially pain, and of failure to communicate. These
errors were almost universal among my
colleagues.
My first wake-up call came in the late 60’s when a married
couple together in my office
asked me to help the husband to die. He was suffering severely
from cancer that had invaded his
spine, causing paralysis from the waist down,
loss of bladder function and constant severe pain. The cancer was
resistant to all forms of treatment. I
still have a sense of desolation because of
the blundering inadequacy of my response.
Years later I cared for two dying patients at home. Both had
strong, close support systems.
One had daily help from the religious community to which he
belonged. Family members from whom he had been estranged came to
assist in his care, and regained
intimacy. The other had a granddaughter, a nurse,
who coordinated care from devoted family members. I made frequent
house calls, and observed how
different the dying process was from what I observed
in hospital. The contrast was startling. At home a sense of
acceptance and love, in
hospital usually a distancing and a loss of personhood, often
with both patient and family kept in
ignorance. I realized that the medical establishment
was all-powerful in a hospital setting, and that physicians were
often ignorant, and worse, uncaring of
the needs of dying patients and their families
.
The experience that finally persuaded me that dying patients
needed more power to influence
the way they died was in caring for a man in his late 30’s
with pancreatic cancer. After all treatment options had been
exhausted, he asked me, with
his wife present in the room, to help him to die. By then he
was emaciated, vomiting frequently, and suffering unremitting
pain. Later his parents came as
well, to demonstrate their support for his decision. I believed
that his request was entirely rational. My attempts to help him
and yet remain within the law
were ineffective, and he died an agonizing death. Hospice
would surely have relieved much of his suffering, but he was
reluctant to have hospice
involved. His wife’s anguish at the manner of his death and
my impotence in the face of a law which then prohibited me from
mobilizing all the resources
that he desperately needed, impelled me to work to have
PAS made legal.
I was of the opinion that the Medical profession was not ready
then to deal meaningfully with
requests for PAS from dying patients who desperately wanted
that option. I joined the Hemlock Society, from which I have since
resigned, and learned that a small
group of individuals, independent of the Hemlock
Society, had come together to attempt to place a citizen’s
initiative on the Oregon ballot
to make PAS a legal option for qualified patients. I joined
the group. During the next eighteen months we painstakingly
drafted the proposed ballot
measure, incorporating many safeguards, and reaching consensus
on issues on which we initially disagreed. As an example, a
minority considered the option
of voluntary euthanasia, the injection by the physician of
a lethal dose of medication into the dying patient’s vein. I
opposed this option for three
reasons: firstly because of my personal discomfort with the
proposal; secondly because I believed that the support of the
proposed legislation by at
least a substantial minority of physicians was essential, and
the result of an informal poll of
about thirty family physicians I conducted in Oregon
showed that while half supported PAS, none supported euthanasia;
lastly because I felt that the scope
of the law needed to be clearly limited.
The ballot measure was narrowly approved by Oregon voters in
November 1997. Two years later
the measure was again voted on, and this time approved by
a 60% majority. Legal challenges had been rejected, and the Oregon
Death with Dignity Act became law. In
1999 the Oregon legislature added several
amendments to clarify definitions and rectify some ambiguities.
THE OREGON DEATH WITH
DIGNITY ACT
The Act allows an adult terminally
ill resident of Oregon with a life expectancy
of six months or less who is mentally competent, fully informed
and acting voluntarily to request from
his or her attending physician a prescription for
a lethal dose of medicine to end life. The physician may legally
provide the prescription if all the
provisions of the Act are satisfied, or may refuse
the request. If the physician refuses, the only requirement of
that physician under the Act is
that records be transferred on request if the patient
establishes care with a new attending physician. The
attending physician must ensure that the patient is indeed
terminally ill, capable of
making rational health care decisions and that the request
is made voluntarily. The patient must be informed of the diagnosis
and prognosis, and of alternative
treatments, including comfort care, hospice care
and pain control. The attending physician must ask the patient to
involve family members and must assure
the patient that he or she can with-draw the
request for PAS at any time.
The attending physician then must refer the patient to a
consulting physician
knowledgeable about the patient’s disease, who must confirm the
diagnosis and prognosis, and verify
that the patient is capable, is acting voluntarily, and
has made an informed decision. If either physician is of the
opinion that the patient’s judgement
may be impaired by mental illness, including
depression, the patient must be referred to a psychiatrist or
psychologist for determination
of competence. Only if the patient is capable of understanding
and making health care decisions can lethal medication be prescribed.
The patient must make two oral requests for PAS, separated by
at least fifteen days. A
written request must also be completed by the patient, in which
the patient confirms that he or she is fully informed about the
diagnosis, prognosis, the
medication to be prescribed and risks associated with its use,
the expected outcome, and feasible alternatives. Also, that the
request is being made
voluntarily, and that the patient knows that the request can be
rescinded at any time. The request
must be signed by the patient in the presence of
two witnesses, who declare that the patient appears to be of sound
mind, and not under duress, fraud or
undue influence. There is a waiting period of
fifteen days from the time of the first oral request, and at least
two days from the date of the
written request before a lethal prescription can be given to
the patient. Because participation by pharmacists is voluntary, as
it is with all participants,
the attending physician must call the pharmacist to confirm
that the prescription will be filled,
and inform the pharmacist of the purpose of
the prescription. The attending physician must recommend to the
patient that there be a
responsible individual present when the medication is taken.
All steps must be fully documented
in the patient1s record, and the attending
physician must include a note that all requirements of the Act
have been satisfied. The attending
physician who writes a prescription to end life
must send to the Oregon State Health Division completed copies of
the prescription, the
patient’s written request for medication to end life, the
consulting physician’s
report, and the mental counselling report, if performed. In
addition the attending physician must
complete a special health division form
detailing the documentation in the patient’s record, or agree to
make relevant parts of the
record available for inspection by the Health Division to
determine compliance with the Act.
10
To Be or Not to Be
by Helynn Hoffa
I WOKE UP TO DARKNESS and
the rhythmic sound of a machine. I had
no idea where I was or what was happening to me. I tried to turn
but couldn’t move. Fear rose up in
my throat. I didn’t like not knowing what
was happening. I called out but got no answer and I panicked. I
realized that my 60 year old body,
afflicted with polio since the age of 8, was in
an iron machine of some sort with only my head out resting on
something.
I called out again and an
authoritative voice said, "It’s not morning. Go back
to sleep." Bewildered, and not knowing where I was or the
circum-stances, I just started
screaming. In no time, my room was crowded with hospital personnel.
It took some time for them to calm me down. To my horror, I
found I was in an iron lung and the rhythmic machine was helping
me breathe. Two
weeks later, I went home in an ambulance with my iron lung on a
truck. They set up the lung in the
living room and mirrors were placed strategically around
the head of the lung so I could see through the house from the
front door to the back door and into
the back yard. This vista helped to keep me
from feeling penned in. I could also see the television from this
angle.
The machine had port holes where a nurse could reach in and
care for me. I was using the
bedpan, taking bed baths and having my sheet changed through
these port holes while the iron lung kept running. It was all very
awkward and exhausting. I
was getting more restless as the weeks wore on. I was not in a
familiar position, lying flat
on my back, with my body in an iron tube, my head resting on
a table outside the tube, my neck encased in a plastic sleeve
creating the needed barrier to
maintain the pressure I needed to breath. I hated it.
I decided to turn off the machine and get out for short periods
of time trying to breathe on my
own for as long as I could. This meant shutting off the
machine, sliding it open, and having the bed table pulled out from
the tube. Next the sleeve
around my neck was loosened and my body was pulled toward
the foot of the bed table so my head was pulled past the sleeve
and the metal ring. Now I was
fully on the bed table of the iron lung. Then I had to
be turned over from my back on to my stomach so I could be propped
up on my elbows. This
"propped up on my elbows" posture has been familiar to
me for most of my life. I didn’t
know if this was harming me or not but I was determined
to keep it up. I had to have some feeling of being out of that
machine or I thought I’d go mad.
That gave me a feeling of freedom which I wanted very badly so
I’d get out of the machine
for breakfast and stay out until after lunch. Then I’d get
put back in and sleep the afternoon
away because I was totally exhausted from
the ordeal. These afternoon naps affected my night sleep cycle so
I was up half the night,
thinking unpleasant thoughts, remembering the dark times in
my life and feeling despair haunt me.
That began the long battle between the machine and myself. For
a year and a half, I wanted to
die rather than to live like that. I figured it was just asking
too much of me but there was nothing I could do about it. Already,
the polio had left me a quadriplegic
and I had spent my life in a wheelchair.
Surely, this was asking too much. It
reminded me of when I first had polio and couldn’t even turn my
head. I’d lie upstairs in my
bed listening to my friends playing outside in the summer evening.
I didn’t understand what had happened to me but I was
deter-mined to get out even if
it was in a wheelchair. When I finally did get out, my
friends were happy to see me and included me in their activities.
In the fall I went to third
grade. The teacher was most helpful and I could now use my
right hand to do my homework. Children adjust more easily than
adults. I’m not saying it was
easy but it was certainly easier than getting used to the iron
lung.
My parents heard about Warm Springs, Georgia as a place for
treatment for polio patients
because Governor Franklin D. Roosevelt of New York State had
polio and he went there for treatment. We didn’t have the money
to send me so the Kiwanis Club
offered to pay my way. That Christmas I went south
to Georgia where I stayed for a year taking the treatments. The
Roosevelts came down several times
while I was there and I remember one morning
I was seated on the steps leading into the water when President
Franklin D. Roosevelt swam over and
sat down beside me. I can still remember the
hot Georgia sun blazing down on us and the cool air rippling the
blue waters of the pool. He was
a big man and I thought he was handsome. He asked
me about my parents and then asked me what I wanted to do when I
grew up. "I don’t know. I
don’t guess I can do much." He looked at me and smiled
and said, "If I can be elected President of the greatest
country on earth even though I
am in a wheelchair, you can do anything you want." "I
want to be an
archeologist," I said a little hesitantly. "Then do it,
"he advised. Needless to
say, I idolized him and his words kept me going through many a
dark day but not all the dark days.
Not even a hero’s words could get me through
some of the despair I experienced as I grew to womanhood.
When I was in my twenties, I attempted suicide. I came back to
consciousness in Queens
Hospital in Honolulu. I had gone to a prominent surgeon to
get some work done on my right foot. My toes were curling under
and made it difficult to wear
high heels. He looked at me with a gleam in his eyes.
With my polio, I was a surgeon’s dream. I told him
repeatedly, I wanted nothing else
done besides my foot. When I came to, my right hand was in a cast.
He had "stabilized" my
thumb. My left arm was in a cast because he had operated on
that elbow. I was furious, to say the least. Unable to use my
right hand, which prior to the
surgery was fully functional for me, I could no longer work
effectively as the editor of the Hawaiian
Sportsman magazine and
sports reporter for the Honolulu
Star Bulletin.
When the cast came off and I found my stabilized thumb
unusable, I had to learn how to
hold a pen all over again, and how to type without using the
ineffectual thumb. My deadlines came
and went and my career was at a standstill
for several months all because of an over zealous doctor. I
decided life wasn’t worth
living. I had had enough. Fortunately, I bungled a suicide attempt.
When I woke up in Queen’s Hospital I tried to find the words to
explain my actions to my beloved
Mother and Father. It was futile. Rather
than the escape which I sought, I found my life more complicated
than ever. How do you tell your family
you don’t want to live anymore? By
my attempt, I hurt a lot of people who had devoted their lives to
me. They couldn’t understand
why I had attempted it and I had no reasonable answers for
them. And now I was once again faced with another physical
hardship, the iron lung, adding
more anguish to my life.
Pondering this while the iron lung heaved air out of me,
memories flooded me of all that
I had accomplished in my life from a wheelchair. I remembered
fondly the seven years I lived in
Hawaii yet I never saw another person like
me in a wheelchair. Yes there were plenty of disabled veterans and
I knew there must be some other
disabled people on the Island but I never saw another
wheelchair outside of a hospital setting. I soon found out that
the Orientals hide their
disabled in their houses, being ashamed of having some-one who
is not perfect in the family; and the Portuguese believe the
disabled have the evil eye and
stay away from them for fear of being bewitched. It was the
first time I had experienced discrimination and I remembered how
it made me feel very uneasy.
In spite of this, a contingency of fishermen from Pokai came to
me and asked if I would help
them get a breakwater built, "The winter storms wreck our
fleet every year," they said, "We need a breakwater to
stop the waves." "I’ll
try," I said. I wrote an article outlining their problems and
presented it to the Army
Engineers at a meeting in City Hall. To my surprise, the
breakwater was built and a
small plaque put up at its entrance with my name on it. Even
the drone of the iron lung couldn’t take away the good feelings
I still have about being able
to have helped so many of the local fishermen and their
families.
My parents worked for the Navy and decided to transfer to San
Diego Naval Station. I would
have stayed in Hawaii but I wasn’t earning enough money
to hire help for both the house and me so I went with them. It was
not easy to leave a place where I was
well known and recognized for what I did
do from a wheelchair and go to a strange city where I knew no one,
and was just another disabled
person in a wheelchair. I became involved in Episcopal
church work, becoming a member of the Franciscans. My job was
to coordinate the Women’s Guilds and
teach junior high Sunday School. I also
opened an art studio, teaching children on Saturdays and adults on
weekdays.
Even though this kept me busy for quite some time, I soon began
to feel like I was just
spinning my wheels. Despair reared its ugly head once again
and I developed a case of anorexia and
got down to fifty-four pounds. My doctor
despaired of me and predicted I wouldn’t live beyond three
months at the rate my illness
was progressing. I just simply didn’t know if it was that I
couldn’t or wouldn’t eat.
The doctor suggested that Mother hire a Nurse’s Aide to come
in and take care of me in the
afternoons. She and Dad both worked, and I was alone a
lot except for a neighbor who came in to give me lunch. Mother
hired a young woman named Wilma
Lusk and told her it would be a temporary position. Wilma
and I have been together now for over thirty years. She and I
have been through a lot together. I
saw in Wilma a way to get out and about. She
learned to drive and Mother bought her a little car just big
enough for the two of us and
she started back to college. I now have another caretaker named
Karen Jasinski who has been with me for three years and we have
become close friends.
Southwestern Community College was built on the urging of
myself and two other ladies in
Chula Vista. I feel it is one of my most important achievements.
On their twenty-fifth anniversary,
during graduation, they gave me a plaque and an honorary Associate
of Arts degree, of which I am very proud. I
was now in my forties and still living at home. I felt the need to
be out on my own and grow up,
so to speak. Wilma and I moved out to San Diego State where
she finished her education and got a Bachelor of Arts degree in
Art History. Living at the
college was fun and our apartment was always crowded with
youngsters. It was an exciting time to be in school during that
period of social unrest in the
sixties and we were in the thick of it.
I was doing fine and my health was good, so we decided to move
to La Jolla and go into the
printing business. I would be the bookkeeper and take care
of the business end and Wilma would operate the press. That way we
could earn some money and take care of
ourselves. We mostly printed pamphlets and
paperbound books for professors and "mouse cards" for a
laboratory doing cancer research. We also did a lot of Buddhist
papers for the group that Wilma
belonged to.
The post polio syndrome, which I knew nothing about, crept up
on me slowly. I just knew I was
getting weaker. My friends said it was because I was getting
older and there was some truth in that, but friends my age were
not losing muscle strength at
the rate I was. I knew it had to be something else and
if there was anything I wanted to do I had better do it before it
was too late.
So I decided I’d take one last fling and go to England. My
nephew, Larry, my mother, my
cousin Peggy and Wilma planned our trip. Whenever Wilma and
I got a few dollars together, we’d pay for something on the
trip. This is where the press
came in handy. It took us a year and a half to get our part
paid for and we went for five weeks
doing the trip on a shoestring but having a
wonderful time. We didn’t all do the same thing. Larry, Wilma
and I hired a camper and camped
for two weeks doing our cooking and staying in farmers’ fields.
The one thing we all did together was the canal boat trip. With
all of us sharing in the
expenses, that too was reasonable.
When I returned home, I was very
tired and went to a neurologist. After treating
me for three months, he told me I was losing muscle power so fast
that I had Amyotrophic Lateral
Sclerosis and not long to live. He was well noted
in this field and his diagnosis could have been correct,
considering the symptoms
exhibited, but he, like others, just didn’t know about the post
polio syndrome and how ALS and
post polio syndrome appear to be similar in many
respects.
For several months I put my affairs in order, expecting my life
to be over shortly. And then
the day came when the doctor told me I didn’t have ALS but
the post polio syndrome. No one had known about the post polio
syndrome until it happened to a
number of us as we aged. I wasn’t prepared for an
extended deteriorating life. After months of reviewing what I had
accomplished in my long life
with polio from a wheelchair, it was a severe blow to learn
that now it was not coming to an abrupt end but would drag on
slowly. What would I do with
the rest of my life? Was this a cruel joke or a reprieve? I
read in a magazine for the disabled about a small keyboard
operated by a stylus that would
connect to my regular computer making it easier to operate.
I ordered one. It was just the thing
and now I was back to writing. I asked a
friend of my nephew’s, Gary Morgan, who was the journalism
director of a community
college, if he would help me write a book. I needed someone to
look up the data because I couldn’t
do that. Together we co-authored the book,
Yes, You Can.
It dealt with the whole spectrum of life for the physically
handicapped. It gave some purpose to
my life and kept me busy. It was published
by Pharos. I then decided to independently try a novel, Golden
Shores,
which was published by Paradigm.
I was so engrossed in the books I didn’t realize my health
was deteriorating. My right
hand had weakened so much I could no longer hold the stylus.
Nor had I the money in invest in a
computer that could accommodate my special
and diminishing capabilities. After having used an IBM electric
and then a computer, I found it
difficult to dictate what I wanted to write. I needed that
"hands-on" feeling which is not present in dictation.
I am still writing occasionally but it
goes slow and awkwardly. My latest books,
memoirs of my life in a wheelchair, have not found a publisher
which discourages me. I was a
writer all my life for magazines and newspapers; I was editor
of the Hawaiian
Sportsman. I’ve had
some success at writing and it is difficult
to accept that my work is no longer finding an outlet.
I can do less and less for myself as the post polio syndrome
advances. I can no longer feed
myself or do other simple things. There are times when I am
discouraged and wonder if it is worthwhile going on. But that all
seems so cowardly.
I’ve had a full rich life in spite of my handicap. I am sure
there may be more ahead of me
that can be as rewarding and fun as what I have experienced
in the past. For every ray of hope and
optimism there is doubt and despair
following close on its heels. I have found that the doubts
outweigh any positiveness I can
muster up, especially in the dark nights when I can’t sleep
and my situation seems overwhelming. When other people can’t
sleep, they can get up and walk
around, get a drink, and read a book until they feel sleepy
again. I just have to lay here staring at the ceiling surrounded
by dark-ness, unable to move
during these endless nights. It is at these times that I don’t
really want to go on. Why should I tolerate all this pain when I
wouldn’t have to?
I know there is no getting better. Each plateau I find myself
on is a lower one. With post
polio syndrome, exercises are of no help to build and maintain
deteriorating muscles. In fact,
exercise is not advised because it tires me out
too quickly. However, I have found the massage which includes
range of motion techniques
keeps my muscles and joints from stiffening. If
only the ill effects of post polio syndrome would not continue to
grind away at my body, making
just plain living harder and harder, perhaps I wouldn’t feel
so discouraged at times. This sure progression of being able to do
less and less is not easy to
deal with because it takes away hope for a better future. The
lack of money exacerbates many of the problems handicapped people
face. The state doesn’t let us have
enough to live on. The state gives a disabled
person a small stipend and if we earn any extra money, the state
deducts that same amount from our
measly stipend, which hardly seems fair when
we are trying to make a go of it. By doing this, the state
perpetuates handicapped people
living below the poverty level. There has to be a better way;
one that would encourage the handicapped people to work and
con-tribute when we can. This
would help build self esteem and give us a feeling of
earning our own way in society. To have to take hand outs, to have
to fight institutions and
political powers, to have to beg for everything needed for our
upkeep, not only lowers our self
esteem but leads to depression as well. And depression
leads to suicidal thoughts and desires.
True, there are jobs a handicapped person can do depending on
the disability and the
availability of work. Work is often times found for the men-tally
challenged by the system and for the
very brilliant, accommodations can
be made at universities and in laboratories. But for the vast
majority of us, who have just
average intelligence, there isn’t much emphasis on placing
us in the workforce or allowing us to
supplement our stipend without penalty to
raise our standard of living. We are forced to work, under the
table, so to speak, and we
don’t like having to do something illegal just to make a dollar.
Something should be done about this in the legislature, but I
don’t know how to go about
it. I don’t understand why
the legislators don’t see that it costs less to keep someone
at home than in a skilled nursing facility. I, for one, would
rather die than be warehoused.
Post polio syndrome brings a lot of pain with it, as well
as diminishing abilities. I have no tolerance when it comes to
pain and even though I take
pain medication, it never seems to be enough. I have a fear
of taking too much medication to quiet the pain and slipping into
a coma. Being in a coma is
totally unacceptable to me. So I live with pain, some days better
than others.
It would be so easy to put an end to it and then something
snaps in my brain that pulls me
up with a jerk and says, "Don’t feel that way. There are
days that are good. You have friends
who would be hurt by your passing." I
noticed that people who say that suicide is a selfish act are
never the ones who have
contemplated it. I’ve also noticed that these people end up
giving me a lecture on religion or the
law in case I am unaware of the taboos against
suicide. There are many debates
now concerning assisted suicide and people have very
decided opinions on the subject. It’s not easy to come to any
universal conclusion because it
is such an individual choice. It is not a subject to be taken
lightly and I don’t. Yes, there are times when I want to be dead
but they are followed by times
when I am glad to be alive. And so the seesaw goes on.
As it stands today, I do not choose to die but tomorrow I may.
Circumstances change, sometimes
abruptly, and we should have the right to terminate
a life that has become intolerable. Can
an individual make this decision freely, given current societal
constraints? Suicide is against
most religious principles. This creates a strong ban against
it in our society and makes it difficult for both the religious
and the non-religious person to
make a decision to end their life, regardless of the circumstances
under which they are living. They feel
suffering is ennobling to the
soul and welcome it.
Doctors, trained to save lives, find it difficult to
participate in a termination. It
is against their Hippocratic Oath. So the medical field is
naturally against this procedure with most doctors being reluctant
to even discuss the issue.
Before people make a decision about suicide, they should discuss
the diagnosis and prognosis of
their illness or condition with more than one doctor to
clearly understand the situation they are facing. It behooves us
to make sure we are not just
going through a period of despondency, which we all do at
times.
As long as I have my mind I want to
be able to make the decision for myself.
I have an over riding fear of lying in a coma and not being able
to make my own decisions. I do
not want to be resuscitated and live in a coma for
years, so therefore I have made a legal document, stating what is
to be done, if such a case
should arise. I want no heroic measures taken to keep me alive.
Up until now I have been skirting the issue, avoiding the worst
case scenario where the pain is
unbearable and life has but a short time to be lived. When
the point is reached where the pain can no longer be kept under
control with a morphine pump
and life is a living hell, then I think the patient has
every right to ask his or her doctor to help put a merciful end to
it. It serves no purpose for a
person to live in agony when it can be alleviated. Death
comes to all of us sooner or later. This is just bringing it a
little sooner, in a merciful
way ending the extreme suffering.
I had a friend, Gordon, with post polio syndrome who bought a
gun and said he would take his
life when it got too bad. But one morning he found he couldn’t
lift the gun anymore so his way out was gone. His doctor would not
aid him. He said to me, "Isn’t
it strange that we don’t let our dogs or our race horses
suffer but we expect our loved ones to endure the pain." He
died a long lingering death
gasping for each breath.
It would be so easy for a doctor to just order an overdose of
pills and it would be all over
in a few compassionate minutes. I don’t want what happened
to Gordon to happen to me. When things
get too bad, I want a doctor’s assistance,
so my life can end peacefully. I feel I have a right to that
decision. It’s my life, not
someone else’s and I should have some control over it and
its end.
"Partial
Text of Chapter"
15
Euthanasia — Considering
Death Over Life
A Psychologist’s Perspective
by David R. Cox, Ph.D., ABPP
B EEP..BEEP..BEEP..BEEP.."
My pager was sounding and lit up with a
telephone number followed by the code 911. Emergency. I got up
from the Board of Directors meeting
into which I had just settled and
reached for my phone. "You’ve
got to come quick. They say my father burst an aneurysm and
may not make it. I need you..." I
received calls like this before, especially when
working full-time in hospital settings. However, this time, it was
different. This time, I was
responding to a call from my wife...
Jumping on the next plane, we flew to New York and rushed to
the hospital. My father-in-law
had been a walking time bomb. For years, he had cardiovascular
problems as well as an abdominal
aortic aneurysm. It was amazing that
he had not passed away within five minutes of the burst aneurysm.
Somehow, emergency medical technicians
had gotten on the scene rapidly enough
to keep him alive. When we arrived at the hospital, he was in
emergency surgery. The hours and days that followed took me
through an experience with my
own family quite similar to those that I had been through on
numerous occasions before with others.
The fact that this occurred the week I had promised this
chapter was especially uncanny.
The 72 hours that ensued following my
being paged took myself and the rest
of our family through the gamut of emotion — anxiety, fear,
fantasy, depression, prayer and
eventual resolve that I have seen on numerous occasions. This
time, though, I wasn’t there simply as an outsider — a
relatively detached
professional — but, rather, as a family member with the mixed
blessing of understanding all of the
medical and psychological issues with which
we were all trying to deal. This time, very personal feelings had
to be weighed in with what
usually was provided as a compassionate, yet objective professional
opinion.
END OF LIFE ISSUES AND EUTHANASIA
Euthanasia. These days
the term, and act, is at least openly discussed. Most of
us in the medical professions know that for years it was not
spoken of even though the act
certainly occurred. Euthanasia as a concept and act has
significant implications to
many individuals and families. It may be perceived by
some as the act of an irrational individual, by others as rational
suicide and by yet others as
murder (when it is assisted).
It is not my intention to sway the reader in one direction or
the other with respect to
"right or wrong". In fact, I’m not entirely certain
that I yet have a firm stance
on this. I see "both sides" of this issue in my
professional work and
understand the perspective from which persons argue pro and con.
I understand the multitude of reasons
that a person might consider ending life,
decline medical care, or go the other direction and decide to
fight a condition "against
all odds". These are not easy problems with which we grapple,
regardless of the decision that is
made after careful consideration. And hope-fully, one
does give such a weighty issue careful consideration. My hope is
that by sharing some of the issues
that I have had occasion to help patients and
loved ones consider, and now dealt with from a much more personal
perspective, the reader will
understand the very difficult thought process that is required of
a person, their loved ones, and the medical professionals, taking
a considered approach to life versus
death.
As stated, this thought process is not required solely of the
individual who is ill or
injured. It is also required of the healthy loved ones and medical
professionals in that person’s life
— for they must deal with the topic even
if they are given no significant say in the matter. They may have
to live with the decision,
though the decider of fate has since passed away. Or they may
be forced to take a more active role, whether through emotional
pleadings from others or
medical/legal requests or mandates.
Why a Psychologist?
The work of a psychologist is commonly misunderstood. Mention
that I am a psychologist and
many people respond by "Oh, I could use your advice" or
"Oh, no...I’m not crazy, am
I?". But psychologists do much more in our health care
system (and elsewhere, for that matter) than many people realize.
My work as a psychologist has
not been limited to helping people with "difficulties in
living", as might be portrayed to the public on the
television show Fraser
or the older Bob
Newhart Show. Neither
has it concentrated solely on
those with severe mental illness as depicted publicly in popular
films like One
Flew Over the Cuckoo’s Nest.
Rather, in addition to my office, my work has
taken me from intensive care unit to locked psychiatric unit, to
jails to pediatric wards and
elsewhere. Patients with a variety of problems, to a large degree
directly related to medical illness as opposed to a purely
"mental ill-ness", have
either been referred to me or sought out my assistance. Although
many of life’s difficulties do not
require medical attention, relatively few serious illnesses
or injuries are free from psychological difficulties. It is with
those people who have emotional
and physical ailing that I have worked most.
Within this realm, I have had many occasions to interact with
people debating the decision of
life versus death. The issue of death has come up in a
variety of ways. Suicide is not an uncommon issue of discussion in
my line of work. In fact, most
of the patients that I have evaluated and/or treated have
struggled with this at one time or another. They may be
desperately emotionally
stressed and see suicide as their best, or at least seemingly
simplest, solution or escape.
Many survivors of traumatic injury or serious illness wonder,
"Would I be better off dead?" Some other patients are
not struggling with whether to
bring on their own death, but have already faced death acutely
through heart-stopping cardiopulmonary arrest or severe brain
trauma from an automobile
accident. Yet others have to face death on a daily basis
as they fight life-threatening cancer or autoimmune disease. They
all confront death, their
mortality and the very real and practical issues that exist
in deciding if life is worth living. "Would my family be
better off with-out me?",
"You call this living?",
and other such struggles are voiced silently or
out loud as they try to make sense out of their current condition,
their future (if they decide to
have one) and the stresses of living with terminal ill-ness,
chronic disability or presumed
ineffectiveness and unimportance.
The "Mind-Body" Dichotomy
Over the years my work with a variety of patients has ranged
from those with severe problems such as schizophrenia and other
conditions traditionally viewed
as "mental illness" to others whose primary diagnosis is
traumatic brain injury or a
cancerous brain tumor — conditions generally viewed as "physical
illness". I have come to firmly believe that the distinction
between mental and physical
illness is a false one. Not only is it false, but it is also
misleading and seriously
detrimental to individuals as well as society as a whole.
It has led to a perception that there is a dissociation between
physical and emotional well
being, and in so doing has led to a socially acceptable denial
of the responsibility one has in
regard to how one’s behavior and emotion effects
one’s physical health. As well, it has led to neglect, within
society and the medical
community, of the serious effects that physical ailments can have
on one’s emotional and behavioral
well being. This is not to deny
that there are issues that are psychological (mental) processes
relatively (or perhaps entirely) free from physical
"illness", but rather
the two are inexorably intertwined and therefore to totally
separate them
is a critical mistake. Mental processes are not predetermined,
biologically-driven events over which we have no control — and
therefore need claim no
responsibility. The physical and mental interact and are
interdependent. Just as an automobile engine requires both
gasoline and an engine to
operate, the human body requires both mental and physiological
processes to
"operate" as we know it. The problem comes in measuring
whether or not these aspects
— mental processes and physiological processes — are functioning,
and functioning properly.
What of the Spirit?
Let’s make this scenario more complicated yet.
In addition to the physical and emotional status of an
individual, I believe that the
spiritual well being is equally, if not more, important in one’s
life. Spiritual issues almost
invariably come up in my practice, as people either struggle
to find meaning in life or explain their faith as one reason they
are able to go on living
despite exceedingly difficult circumstances. It is common for
me to hear from my patients with brain tumors that their faith
keeps them fighting the cancer.
It is also common to hear from survivors of traumatic brain
injury, or others with chronically disabling conditions, that the
injury or illness has left them
with a new-found positive perspective in life — with a
renewed and revised sense of the priorities in life. They
frequently indicate to me how
they now see the importance and value of things previously
minimized or dismissed (such as
relationships and time with people) and the relative unimportance
of "worldly" material items. I give thanks to my
patients in this regard, as
they are constant reminders to me of the priorities in life
that are so easily overlooked or taken
for granted by those of us who are relatively "well".
People familiar with the writings of Victor Frankl, the
psychiatrist, founder of
Logotherapy and survivor of Nazi concentration camps, recognize
this theme. Those not familiar with
his writings owe it to themselves and their
loved ones to read his book Man’s
Search for Meaning.
Professionals dealing with
these issues will hopefully be familiar with that as well as his
book The
Doctor and the Soul.
Dr. Frankl is one of many authors to write about
overcoming tremendous odds, severely depressing environments, and
ghastly horrors to see the strength of
the human soul and the tremendous significance of
personal meaning as a reason for being.
"Partial
Text of Chapter"
16
What We Should Do
Besides Killing People
by Barry Eliot Cole, M.D., M.P.A.
Administrator, National Pain Data Bank and
Pain Program Accreditation,
American Academy of Pain Management
Sonora, CA
I MUST NOT GET IT!
Since when is killing someone who might be nearing the end of
life appropriate? Why is killing someone who is suffering from a
serious medical illness or even
a terminal condition the best that we can offer? What about all of
the wonderful technology that now
exists? What about all of the new medications that
keep coming out on the market? What about the changes in state
laws that make strong pain relieving medications more available
and lessen the risk for
physicians prescribing them?
What has happened to our society and to us that we would
enthusiastically look to
euthanasia and physician-assisted suicide as the best solutions
for the medically ill? With all of the
wonderful techniques, skills and medications available
for relieving pain, physical symptoms and suffering, the increasing
interest in and provision of hospice care, and a desire by most
people to put an end to violence, how ironic that we would even
consider euthanasia as the best
option.
One of the core principles of the Judeo-Christian tradition
deals directly with murder.
According to these teachings and beliefs we shall not commit
murder. "Shall not" is the
same as "no," and "do not do this." What part
of "no" is not clear?
Murdering people is wrong and euthanasia is just another form
of murder. Deliberately taking any life is murder regardless of
the under-lying motivations. To
clean up the fact that murder is somehow not wrong when
we perform acts of euthanasia we rationalize what is being done by
claiming that "merciful
killing" is beneficial. Merciful killing is beneficial for
whom? Is it beneficial for the people
suffering from unpleasant illnesses or for those
who watch loved ones suffering?
I am not naive. As a psychiatrist for two decades it is clear
to me that those wanting to die
do not need my help in any way. They are perfectly able to
jump from high places, cut their wrists, put guns in their mouths,
hang themselves, drive their
cars into immovable objects and take any number of different
household poisons. Physicians have little to offer those bound on
self-destruction considering the wide
range of readily available means that are
highly effective in the community. Physicians and other health
care professionals are only
able to help those who are ambivalent about dying and desire
help. Practitioners cannot be everywhere and importantly cannot be
all things to all people all of the
time.
Are there other options for the potentially terminally ill
beyond killing them? I believe
that there are many options available and none of them involve
the deliberate taking of life. What drives the desire for an early
demise may be the fear that the system
is not able to deal with end-of-life care?
That when we become too ill we will be abandoned by our loved ones
and caregivers, left with broken
bodies and in terrible pain that cannot be relieved.
Are these the reasons that leave so many people sadly believing
that suicide and euthanasia are
their best and only options?
LESSONS FROM THE
EDUCATION FOR PHYSICIANS ON END-OF-LIFE
CARE (EPEC) CURRICULUM
The Institute for Ethics of the American Medical Association
developed the Education for
Physicians on End-of-life Care (EPEC) curriculum in 1999 with
a grant from the Robert Wood Johnson Foundation to educate 750,000
American physicians about palliative
care for the terminally ill. While not the
only curriculum dealing with the care needs of the terminally ill,
the EPEC curriculum has become
the most widely publicized and universally distributed program.
Many of my ideas come from the EPEC curriculum. Physician-assisted
suicide and euthanasia are ancient medical issues. We have
not just stumbled on to these topics in recent times.
Physician-assisted suicide
involves the aiding or causing of a suffering person’s death
whereby the physician provides
the means to commit suicide, but the patient performs the
act of self-destruction. Euthanasia involves the physician
performing the life ending
intervention, with or without the permission of the patient. It is
thought that most physicians receive
requests for assistance with dying and such
requests are usually signs of patient crises.
For practitioners there are serious legal and ethical concerns
about assisting people to
commit suicide or actively taking their lives. Practitioners have
an obligation to relieve pain and
suffering, and to respect decisions to forgo life-sustaining
treatment. Rather than rushing to extinguish life, the EPEC
curriculum provides a logical approach
for responding to requests for assistance with
suicide.
Although the United States Supreme Court has recognized that
there is no fundamental right
to assistance with suicide it has turned the debate over to
the individual states to resolve. While the legal status of
physician-assist-ed suicide can
possibly differ from state to state, only Oregon has made such
assistance legal as of 1999.
WHY DO PATIENTS ASK
THEIR HEALTH CARE PRACTITIONERS
FOR ASSISTANCE COMMITTING
SUICIDE?
Some patients suffer a crisis of confidence about the goals of
their treatment or the
management of their many physical and psychological problems.
Others have profound fears about
possibly suffering with their conditions and they
develop concerns about potentially losing control or becoming
burden-some for others. Those
who experience depression or high levels of pain may become
likely to seek professional assistance in ending their lives.
Because of this desperation,
professional caregivers must be able to work with seriously
ill people and to help them find
alternatives other than assisted-suicide.
Many physicians sadly believe that
they are not adequately trained to address
end-of-life issues. Others are just too busy to provide the
comprehensive care necessary to
manage patients with serious and life-threatening illnesses.
The lack of reimbursement and the need to see large numbers of
people in managed care environments
causes many physicians to just not address
requests for suicide in any way. What
is first needed when practitioners are faced with requests for
assistance committing suicide
is for these practitioners to clarify what the requesters
desire. What are the requesters actually trying to achieve? Not
every request for assistance must be
acted upon. Not every requester is actually making
a direct request for immediate death. There may be many other
issues to resolve.
Requests must be examined carefully and critically to determine
the underlying root causes.
These requests involve the provision of education about
the legal and ethical alternatives for symptom control, the
ability to limit the scope and
duration of selected treatments, along with promoting greater
levels of physical and psychological comfort. To
thoroughly clarify requests for assistance with suicide
practitioners must demonstrate
their immediate concern and compassion. These are not the
"problems" that are adequately explored in the hallway
or in five-minute office
visits. Practitioners must determine if requesters are motivated
to kill themselves because of
underlying thoughts (ideation) regarding suicide, direct
disease effects, medication toxicity or other issues. For safety
reasons practitioners must be
able to determine if their patients are imminently pre-pared
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