The Vegetative State: A Fate Worse Than Death

By Kevin Williams

 

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.

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."

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.

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.

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."

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.

Monks. 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.

Jessie Jackson. 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)

Fanatics. 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.

Child religious nuts. 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.

 

"O death! We thank you for the light that you will shed upon our ignorance." - Jacques-Benigne Bossuet

Tell A Friend.

| Suicide NDE Index | Next |

Copyright © 2014 Near-Death Experiences and the Afterlife