The Vegetative State: A Fate
Worse Than Death
yourself being out of your body and in between
two worlds - a state of limbo. You are aware
of what's going around your body but you can't
move or speak. You feel pain but you can't tell
anyone about it. You are either in a coma or
what is known as a
No matter what you call it, it is certainly
a fate worse than death. This is because it
is neither life nor death.
suffered major brain damage when her heart failed
which cut oxygen to her brain. She entered the
unfortunate condition of a persistent vegetative
state. Her eyes are open and she goes through
periods of sleep and wakefulness. But that
part of her brain that controls most motor functions
has been destroyed. She can breathe on her own,
but cannot eat, thus she is kept alive with
a feeding tube.
legal fight over Terri Schiavo began almost
immediately in 1990. Court-appointed doctors
declared that Terri would never recover from
the brain damage, and for the last 13 years,
she's needed feeding and hydration tubes to
stay alive. That's against her stated wishes,
says Terri's husband Michael. He's been battling
her parents in court, seeking to allow her to
die. For all of the medical knowledge,
legal wrangling and family anguish expended
in the past 10 years over the fate of Terri
Schiavo, the most pivotal question remains unanswered:
Would the 39-year-old Florida woman want to
go on living in her current vegetative state?
That mystery could
have been solved with a simple piece of paper
- a living will (see the bottom of this web
page for more info) written by Schiavo making
clear how she would want to be treated medically
if she no longer could communicate. Lacking
that, her husband, her parents and
a succession of strangers
-- judges, the Florida Legislature and Governor
- have intervened to decide whether she should
live or die 13 years after collapsing in her
home. This should be an important lesson for
anyone who does not want to be kept artificially
in limbo for decades.
Most people die in
what may be called a bad death. One study found
Medical writer John Horgan cited
an article in the Journal of the
American Medical Association for
1995-NOV which described the results
of a study called "Study to Understand
Prognoses and Preferences for Outcomes
and risks of treatments (SUPPORT)."
The study involved over 9,000 patients
in five hospitals. They reported
"substantial shortcomings in care
for seriously ill hospitalized adults."
Horgan commented: "More often than
not, patients died in pain, their
desires concerning treatment neglected,
after spending 10 days or more in
an intensive care unit." A Massachusetts
legislature subcommittee report
on pain management mentioned that
the SUPPORT study "found that half
of patients who died in the hospital
experienced moderate or severe pain
at least half the time during their
last three days of life." - Source:
Journal of the American Medical
Association (JAMA), 1995-NOV.
Cited in John Horgan, "Right
to Die," Scientific American,
euthanasia originated from the Greek language:
"eu" means good and "thanatos" means death.
One meaning given to the word is:
"the intentional termination of
life by another at the explicit
request of the person who dies."
The term euthanasia
normally implies that the act must be initiated
by the person who wishes to commit suicide.
However, some people define euthanasia to include
both voluntary and involuntary termination of
life. Like so many moral/ethical/religious terms,
euthanasia has many meanings. The result is
It is important to
differentiate among a number of vaguely related
Hastening the death of a person by altering
some form of support and letting nature take
its course. For example:
Removing life support equipment
(e.g. turning off a respirator)
Stopping medical procedures, medications
Stopping food and water and allowing
the person to dehydrate or starve
Not delivering CPR (cardio-pulmonary
resuscitation) and allowing a person,
whose heart has stopped, to die
procedures are performed on terminally ill,
suffering persons so that natural death will
occur sooner. It is also done on persons in
a persistent vegetative state.
The option of dying
by starvation or
Patient Refusal of
Nutrition and Hydration
(PRNH), as it is referred to, appears to be
a compromise which allows terminally ill people
to end their lives and still have ministrations
from hospice and from a doctor. Hospice nurses
know that this is a painless and gentle death
which obviates the necessity of a more drastic
end. Most hospice reports of dying patients
are within one or two weeks from dehydration.
is legalized in the US as it is in the state
of Oregon, this crude method will have to do.
PRNH is a choice;
it is relatively gentle and painless in most
reported cases. It is certain, and loved ones
can be there. Hospice workers and doctors will
regard this as acceptable and treat the patient
with compassion. It is not offensive to most
religious groups. But it is not swift; the patient
must be close to death, and medical and nursing
help should be available. It may not be an option
Terri Schiavo's husband
petitioned a Florida court to have the feeding
device removed, a step that would lead to her
death within a few weeks. But her parents strongly
objected. What would Terri Shiavo want? Her
husband says she would want to be allowed to
die. But she left no written instructions. After
a hearing, a judge agreed that given her medical
condition, her husband had the legal right to
have the feeding tube removed. The decision
was supported by years of court rulings, as
well as a Florida law.
when the game of political Ping-Pong began.
Her parents didn't want to see her die. And
Governor Jeb Bush came to their rescue. Governor
Bush ordered that a severely brain-damaged woman
be placed back on life support, at the request
of her parents, although the woman's husband
won a court order to have his wife removed from
life support six days ago. This happened after
Governor Bush tried to stop the feeding tube
from being removed, was rebuffed by the courts,
then got his state legislature to grant
him explicit authority to order the tube reinserted.
The highly unusual statute, dubbed Terri's Law
by Florida lawmakers, gave Bush the authority
to order Terri Schiavo, specifically, to have
her feeding tube be reinserted. Jeb Bush's intercession
to put the feeding tube back into Terri Schiavo
in Florida, places the government formally in
the new role of doctor to the nation. The husband
of the severely brain-damaged woman challenged
the legality of a hastily passed state law empowering
Governor Bush to keep her alive. In a court
filing, lawyers for Michael Schiavo contended
that the law violates Terri Schiavo's right
to privacy and the separation of power provisions
of the Florida Constitution.
"It argues that her constitutional
right to refuse medical treatment
was, in essence, cast aside by a
statute that allows the governor
to do that under any whim and without
any standards and without any review,"
said George Felos, who represents
Michael Schiavo, after filing the
parents have said that their daughter had no
such wishes and is not in a permanent vegetative
state despite what all court-ordered physicians
claim. Her parents state that she is responsive
and could improve with therapy. But this is
only wishful thinking and flies in the face
of all medical understanding of the persistent
The legal battle over
her fate is one of the nation's longest and
most contentious right-to-die cases. Florida
courts have repeatedly affirmed Michael Schiavo's
legal right to remove his wife's feeding tube.
The state Supreme Court has twice refused to
hear the case; the U.S. Supreme Court also refused
to hear it.
"This dangerous abuse of power by
the governor and Florida lawmakers
should concern everyone who may
face difficult and agonizing decisions
involving the medical condition
of a family member," said Howard
Simon, executive director of the
American Civil Liberties Union of
Terri Schiavo's well-intentioned
parents are missing the point altogether. And
it's tough to be critical of them. Anyone who
has had to watch a loved one die understands
their emotions. But they have helped make their
daughter a pawn in a great cynical chess game,
shuttled from hospital to hospice and back to
hospital, having a feeding tube inserted, removed,
and reinserted, depending on the state of the
law on any given day.
The politicians, you
can be certain, have other motives. The speaker
of the Florida House sees the issue as his ticket
to the U.S. Senate. And right-to-life activists
see the Schiavo matter as their wedge to push
their own political agenda. Terri Schiavo is
merely this week's photo op. And she'll be forgotten
by her new allies as soon as they move on to
their next battle.
The great untold story
is that what's happening to Schiavo occurs hundreds
of times a day in hospitals, nursing homes,
and bedrooms all over this country. People get
very sick. And after agonizing talks with doctors
and friends, often after prayer, families make
the painful decision about whether to continue
artificial means to keep a loved one alive.
Sometimes, the choice is to do everything possible.
Many other times, the choice is to let someone
Schiavo case is not, as some critics suggest,
about state-sponsored killing. An ethical, legal,
and theological gulf exists between allowing
someone to die and acting to hasten their death.
In a perfect world,
everyone would prepare a living will, in which
everyone would explicitly say whether they want
to be kept alive through extraordinary measures.
But in this imperfect world, many people don't,
and someone has to make the painful decision.
In the absence of
a living will, the choice should be made by
the family, not the state. If the family cannot
agree, the courts can resolve the matter. That's
not a great option. But do we really want politicians
-- with their own agendas and ambitions -- deciding
who lives and who dies? Make no mistake. That
is what Florida has done.
The president of the
Florida Senate, James E. King, got it right:
"I really do hope we've done the
right thing. I keep thinking, what
if Terri didn't want this to happen
at all," he said. "May God have
mercy on all of us."
tragedy is he didn't figure that out until after
he turned Schiavo's life over to Jeb Bush.
movement has an honorable mission to protect
the sacredness of life. But for some strange
reason, they do not view death as a part of
life. This attitude leads to the false and dangerous
belief that life should be prolonged as long
as possible, even artificially, no matter what
the quality of life or how much suffering exists.
There are two main
arguments offered by Christians, and those of
other faiths, that advise against an individual
seeking suicide, for whatever reason:
Life is a gift from God, and that
each individual is the steward of
that life. Thus, only God can start
a life, and only God should be allowed
to end one.
An individual who commits suicide
is committing sin.
God does not send us any experience
that we cannot handle. God supports
people in suffering. To actively
seek an end to one's life would
represent a lack of trust in God's
Of course, there is a
significant and growing percentage of religious
and non-religious people who do not accept these
theologically based arguments. They might argue:
Each person has autonomy over their
Persons whose quality of life is
nonexistent should have the right
to decide to commit suicide, and
to seek assistance if necessary.
Sometimes a terminal illness is
so painful that it causes life to
be an unbearable burden; death can
represent a relief of intolerable
People facing a terminal illness
may not want to deplete their resources
to fight the inevitable when they
can instead have these resources
remain with the family after they
People facing a terminal illness
may not want to put themselves or
their family through the horrible
ordeal of a long and agonizing death.
active political question is whether individuals
should be allowed to choose suicide, or whether
they should be forced to follow the theological
beliefs of the dominant religion.
Living wills, Advance Directives, Power of Attorney
God forbid that you
should ever become comatose or vegetative. But
if you do and want to be allowed to die and
not be kept artificially alive for decades -
you will need the following documents listed
below. Some you can just download. Someday,
you may be glad you did.
What are Advance Directives?
is a general term that refers to your oral and
written instructions about your future medical
care, in the event that you become unable to
speak for yourself. Each state regulates the
use of advance directives differently. There
are two types of advance directives: (1) a Living
Will and (2) a Durable Power of Attorney for
Health Care. There is also a document called
a Do Not Resuscitate order. These will be explained
Why Do I Need an Advance Directive?
give you a voice in decisions about your medical
care when you are unconscious or too ill to
communicate. As long as you are able to express
your own decisions, your advance directives
will not be used and you can accept or refuse
any medical treatment. But if you become seriously
ill, you may lose the ability to participate
in decisions about your own treatment.
What is a Living Will?
living will is a type of advance directive in
which you put in writing your wishes about medical
treatment should you be unable to communicate
at the end of life. Your state law may define
when the living will goes into effect, and may
limit the treatments to which the living will
applies. Your right to accept or refuse treatment
is protected by constitutional and common law.
download your state's
Living Will form here.
U.S. Living Will Registry
offers an excellent service where they electronically
store your advance directives and makes them
available directly to your health care providers
anywhere across the country by telephone and
internet through an automated computer-facsimile
system. This is handy because there may be situations
where you enter a hospital and your advance
directives are not known or available. This
service will make certain your wishes are granted.
What is a Durable Power of Attorney for Health
A durable power of
attorney for health care is a document that
enables you to appoint someone you trust to
make decisions about your medical care if you
cannot make those decisions yourself. This type
of advance directive may also be called a health
care proxy or appointment of a health care agent.
The person you appoint may be called your health
care agent, surrogate, attorney-in-fact, or
proxy. In many states, the person you appoint
through a medical power of attorney is authorized
to speak for you any time you are unable
to make your own medical decisions, not only
at the end of life. You can
download your state's
Durable Power of Attorney for Health Care form
The form costs around $25)
What is a Do Not Resuscitate (DNR)
Do Not Resuscitate order is another kind of
advance directive. A DNR is a request not to
have cardiopulmonary resuscitation (CPR) if
your heart stops or if you stop breathing. (Unless
given other instructions, hospital staff will
try to help all patients whose heart has stopped
or who have stopped breathing.) You can use
an advance directive form or tell your doctor
that you don't want to be resuscitated. In this
case, a DNR order is put in your medical chart
by your doctor. DNR orders are accepted by doctors
and hospitals in all states. DNRs can be obtained
by your or any doctor.
Have Medic Alert Make Your DNR More Prominent
For people who do
not want to be hooked up to a machine and those
who want to refuse resuscitation, there are
ways to prevent it from happening. Most states
allow people to have a DNR (Do Not Resuscitate)
order. That means that if you are in a supermarket,
for example, and your heart stops beating, you
will not be resuscitated. But this will only
happen if you have a DNR that is easily identified
by medics. The problem with DNRs is that medics
do not look for them whether you keep your DNR
in your wallet or on your fridge. Fortunately,
DNR identification jewelry can be obtained through
the non-profit 45-year-old
Once you have filled out your DNR document,
you send MedicAlert the last sheet of your DNR.
For a small fee, you can join MedicAlert. Then
they will inform you about the choice of necklace
or bracelet that clearly states your wishes
Do Not Resuscitate.
In some states, this jewelry and/or official
papers (which you might not have on your person)
are the ONLY methods honored by emergency medics.
If such a notification is not present, you
be resuscitated - meaning you will be denied
A tremendous number
of NDEs I read about involve the person coming
back and being extremely upset that they were
resuscitated. Often it leads to severe depression.
4% of experiencers commit suicide. Being revived
from death is just another instance of others
deciding whether you should live or die.
Don't Forget About Organ Donation!
is probably no better gift than the gift of
life. But the number of people requiring a life-saving
organ transplant continues to rise faster than
the number of available donors. Approximately
300 new transplant candidates are added to the
waiting list each month. Countless numbers of
needy children have died waiting for a life-saving
organ transplant. And the sad part is that it
is entirely unnecessary. It is so simple to
have your organs donated when you die. The irony
is that adults who want to die are often forced
to live; but children who want to live are forced
to die because not enough people donate their
organs. We can't take our organs with us! And
we pass up such a great blessing to someone
else if we neglect such a tremendous opportunity.
Unfortunately, the vast majority of people who
die do so without thinking about or knowing
how valuable their body could be to someone
else. What is the price for giving someone life
when they so desperately want it? So, make your
life review even better. Donate your organs
and give a child a new lease on life. Visit
National Organ and
website to see how.
Also read more about
the case for assisted
suicide and active voluntary euthanasia and
why someday you may beg for it.
all about taking control of your own life and
Don't let some religious zealots do it for you.
Take action now.