The Vegetative State: A Fate Worse
Than Death
Imagine
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
persistent vegetative state.
No matter what you call it, it is certainly a fate worse
than death. This is because it is neither life nor death.
In 1990,
Terri Schiavo
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.
The 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 Jeb Bush
- 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 that:
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, 1996-MAY.
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The word
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."
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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 mass confusion.
It is
important to differentiate among a number of vaguely related
terms:
Passive Euthanasia:
Hastening the death of a person by altering some form of
support and letting nature take its course. For example:
1. |
Removing life support equipment (e.g. turning
off a respirator) |
2. |
Stopping medical procedures, medications etc. |
3. |
Stopping food and water and allowing the person
to dehydrate or starve to death |
4. |
Not delivering CPR (cardio-pulmonary resuscitation)
and allowing a person, whose heart has stopped,
to die |
These 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.
But until
voluntary physician-assisted euthanasia
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 for everyone.
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.
That's
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 document.
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Her 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 vegetative state..
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 Florida.
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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 die.
The 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."
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The tragedy is he didn't figure
that out until after he turned Schiavo's life over to Jeb
Bush.
The Right-to-life
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:
1. |
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. |
2. |
An individual who commits suicide is committing
sin. |
3. |
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 promise. |
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:
1. |
Each person has autonomy over their own life. |
2. |
Persons whose quality of life is nonexistent
should have the right to decide to commit suicide,
and to seek assistance if necessary. |
3. |
Sometimes a terminal illness is so painful that
it causes life to be an unbearable burden; death
can represent a relief of intolerable pain. |
4. |
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 die. |
5. |
People facing a terminal illness may not want
to put themselves or their family through the
horrible ordeal of a long and agonizing death. |
An 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.
1. 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.
2. What
are Advance Directives?
Advance
Directive 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 below.
3. Why
Do I Need an Advance Directive?
Advance
Directives 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.
4. What
is a Living Will?
A 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.
You can
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.
5. What
is a Durable Power of Attorney for Health Care?
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 here.
(Note:
The form costs around $25)
6. What
is a Do Not Resuscitate (DNR) Order?
A 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.
7. 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
MedicAlert Foundation.
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 to
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 WILL
be resuscitated - meaning you will be denied your paradise.
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.
8. Don't
Forget About Organ Donation!
There
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 the
National Organ and Tissue Donation/Transplantation
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.
It's all about taking
control of your own life and death. Don't let someone else
do it for you. Take action now.
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