Don't take sides: Take action!

Numerous people have heard of the Terry Schiavo case, and most people you know have probably already voiced their opinions of the situation to you. No doubt you have your own ideas about how the situation should be handled, as do I. But, I'm not here now to tell you who I think is right or wrong and why, because frankly, I don't care. Our support for either side, no matter how passionate, does absolutely nothing for Terry. She may die soon, or she may die much, much later, or by the time you discover this article, she may have already left us...but her death will not be in vain. All of life's situations are learning situations, and if you fail to learn the lesson glaring at you so blatantly out of this fiasco, then woe to you should you or someone you care for find themself in a situation similar to Terry's some day. It's time to stop taking sides and begin taking action.

She was not an unattractive young woman, but she felt she wasn't quite good enough for herself--looks-wise, at least. Our primitive sex drives force us to evaluate ourselves constantly as potential sexual partners beginning at an age we don't consider legal through our senior years, even if we happen to hook up with a partner who, for the most part at least, satisfies our general desires. So though she was married, Terry still felt like she could be something better than she was, something aesthetically more pleasing. Obviously, she wasn't so much concerned with her health as she was her looks. Terry was bulimic. She admitted it to a few close friends, and like most bulimics, she claimed she only forced herself to purge after eating every now and then. It wasn't really a problem...so she believed. At that point, her friends should have begun trying to get her professional help, but so many females in this country try such extreme, unhealthy means to get and stay thin and "attractive", that perhaps they didn't realize how serious her situation already was. We can't fault them. Each of us makes our own decisions about our own lives, right or wrong--especially adults--and adults are often stubborn about change. Bulimia is considered a disease. It's a mental problem linked to self-esteem. Most people with it are female and keep the problem to themselves, though there are symptoms which may worsen and become more obvious over time. Bulimic people may suffer chronic bad breath from vomiting frequently (though some use enemas to purge themselves); the acid which bathes their esophagus may eat away at the lining of it, causing heartburn-like symptoms; they may develop cold sores after vomiting; the acid baths invariably destroy the enamel of their molars, sometimes resulting in the necessity of pulled teeth; and each purging of their digestive track takes more and more time for the body to recover from. When you vomit, you totally disrupt the body's balance of electrolytes, blood pressure, hydration, and blood sugar. The immune system may be thrown off balance. Blood vessels may burst just under the skin, leaving the face and chest flush, causing strange, small bruise-like discolorations, swelling the fine blood vessels visible on the inside of the upper and lower eyelids. In Terry's case, her constant abuse of her body resulted in burst blood vessels attempting to repair themselves and sending a clot to her brain which resulted in the stroke which felled her.

Her husband claimed years ago that Terry had made it known to him that should she ever be in a situation where she was not expected to recover and would require artificial external means to keep her alive, she would prefer to die. Her parents and siblings however claim that is not the case, and even if it was, that it would not apply in Terry's current situation. The Schindlers have agonized over the claims of several different physicians who have examined their daughter and decided her condition is terminal: she will never recover, and will most likely only grow worse. They have hope and faith that their daughter will not only survive, but will also eventually somehow overcome her current state. Meanwhile, her husband Michael is undoubtedly living a life of emotional turmoil, getting acosted anywhere he is recognized by people who either wish to berate him or offer consolation. Many think he is cold-hearted, but he has lived with his wife's story in the news on TV, the radio, and in print for years on end. He and his in-laws have spent small fortunes based upon their own beliefs, been followed and accosted by strangers who wish to voice their opinions, and are literally haunted by poor Terry, who only wanted to feel more attractive and now lies in a bed in hospice care, unable to decide her own fate, warred over not only by her family, but by the general public as well.

Those who feel she should have been allowed to die long before now site the fact that no one would willingly choose a life of being bedridden for over a decade, costing their loved ones more money than they might have ever seen otherwise in their entire lifetimes, unable to communicate effectively their hopes or desires, unable to feed or clean up after themselves, never experiencing life as they knew it ever again, putting their loved ones through a living hell of anguish and anxiety. Those who feel she should be allowed to live at any cost believe that all life is sacred and worth saving, even if we can't understand the value of it right now. They feel perhaps that God has His own agenda for Terry and none of us has any right to interfere with it. They might feel, like her parents, that so long as there is hope of recovery, no matter how feeble, that she has every right to be around to strive toward it. If you stopped feeding your children or pets you could face severe penalties and jail time, so how can we allow other human adults to perish from starvation or dehydration when the means to save them are right here?

Both arguments are good ones. I have my own opinion, but I can't care about it because it does nothing at all for this poor stranger who languishes on the news all the time. What I can tell you is that ideally, Terry should have made an official living will up long ago and/or a DNR (do not resuscitate) order, and she should have discussed her wishes regarding a life or death situation with her doctor, her lawyer, her husband, and her parents and siblings. Had her wishes been made clear thirteen years ago, there would not be so much turmoil regarding her case right now.

Less than 30% of Americans are said to have Living Wills of any sort, describing what medical actions should be taken in the event of a life or death emergency if they are unable to make such decisions right then and there themselves. Of the few who have these documents, less than 30% are ever followed through with. The reasons why the Living Will may get ignored might be because the documentation was never shared or discussed with a regular physician or family members, or whomever is designated "in charge" during such emergencies may panic or misunderstand the situation or may never have gone along with the person's wishes to begin with, and unfortunately Living Wills are rather vague to begin with. While those who work in and with the medical field seek to create better, more detailed paperwork describing more and more scenarios and situations, not every life and death situation can be realistically covered. Without knowing how you're going to die, how can you possibly decide when you should or should not be aided by artificial means?

Medical professionals are taught to preserve life at all reasonable cost. A terminally ill person who's really just counting the days or even hours, who simply cannot be cured or kept alive by any means, may be continually brought back from the brink of death by trained doctors and nurses who may be doing little more than prolonging a dying person's already horrible suffering. If there is no way to let them know that it's okay for you to die, then they may well cram tubes down your throat--which generally requires restraining the arms and legs to prevent the patient from clawing the highly uncomfortable tubes back out again (and totally ends further vocalization), they may shove needles through you in an effort to maintain acceptable fluid and nutrient levels, you may suffer from bedsores and muscle cramps, you may be subject to constant bright light and interruptions, and you may even get one of the famous feeding tubes we keep hearing so much about in Terry Schiavo's case.

I thought it was some plastic tube shoved through the esophagus into or toward the stomach, through which some watery puree might be administered... Not so. The feeding tube is inserted directly through an incision in the abdomen into the stomach, and I have no idea what it is they allow to pass through it. I'm going to guess that Terry probably also had a catheter to collect her waste, and this is no more comfortable for any female to endure than any male. Otherwise, I would guess she was tended with a bedpan or some kind of adult incontinence diaper. Regardless, she's spent the bulk of the last decade or so in bed, growing slowly but steadily worse, unable to communicate or care for herself. I was recently informed that a woman who worked as a nurse six years ago at a facility Terry was kept at reported that Mrs. Schiavo would occasionally make her way out of her bed and down the hall to the nurse's station where she would stop and smile and wave at the nurses. If this is true , we can only assume her situation has certainly declined, for if she was improving we'd have seen more recent footage of her perhaps waving toward TV camera crews from a window.

As I write this, Terry lingers with us yet, and it's been ten days since her feeding tube was removed. The bulk of us are unfamiliar with starvation here in America where food is so bountiful we play with it as often as we eat it, and throw away probably almost as many pounds of it as we manage to consume. Thus, most of us find the notion of starvation a horrid thing. None of us likes to go hungry and many of us get cranky or woozy without a snack at least at some point during the day. Personally, I used to fast one day a month just to prove to myself I could. It wasn't easy--mainly because food was still readily available should I change my mind. I could help myself to it if I wanted it. Terry cannot. I once lived with a pair of roommates who complained that I was eating too much of their food (at the time, I could not afford food of my own, and they had agreed to share with me). One meal a day was too much...and that one meal generally consisted of a plate of spaghetti with only salt to flavor it, or a dry cheese sandwich, and water or soda. I also had to walk five miles to work and five miles home at the time. After complying with their wishes and cutting back to one meagre meal every forty eight hours, I lost weight fast! But, I wasn't terribly hungry. My body adjusted to the new, though malnourishing system. Once, because there was no food in the house where I was living and I was too young to buy food of my own, I ate nothing for three entire days. I had water if I wanted it, but I took very little. As I recall, at about noon on the third day, the hunger pangs vanished on their own. My discomfort was gone completely. I lost no discernable weight nor suffered any ill effects. Some Native Americans are said to have fasted for three days straight in order to aid Vision Quests. Perhaps they hallucinated from a lack of food and drink, but I'm guessing they, too, discovered that the discomfort of hunger vanished around the second or third day. With water available, a human may go as long as a month without food. Without water, most of us perish within about two weeks' time.

Dehydration, therefore, is the swifter killer, and symptoms generally include a lack of sweating, development of a slight dry cough, general weakness, a tendency to rest more as our bodies attempt to reserve what fluid and energy we still have. You might call this a fight to stay alive, but even at the last hours of any natural death, the human body will do the things necessary to attempt and preserve itself for as long as possible, through an irreversible situation known as Cheyne-Stokes Syndrome. These attempts to preserve itself include:

1) Cooling of the extremities as nourishing blood is kept around the main organs of the torso to keep them functioning.
2) Metabolism slows and the person tends to sleep more in an effort to retain what's left of their energy.
3) Mental clarity will fluctuate as nutrients are withheld from the brain in an effort to save the more basic organs which preserve life.
4) The body will rid itself of waste so as not to squander energy on digestion or further eliminations.
5) The person will actually begin to refuse liquids! Again, this is in compliance with the body's basic need to keep the digestive tract from taking away energy from the heart and lungs.
6) The senses shut down gradually, with hearing going last.
7) As oxygen to the brain decreases, the person may become restless or suffer hallucinations.
8) The patient by now, of course, will refuse nourishment.
9) Breathing becomes erratic as the circulation slows and carbon dioxide and other wastes begin to build up in the blood.
10) Sweating and eliminations of any kind cease entirely.

By this time, the person has pretty much reached the point of no return. The so-called death rattle one might hear is due to a buildup of unswallowed saliva and condensation pooling in the throat as the patient breathes his or her last.

That was a nice, restful death, wasn't it? In reality, around 50% of patients who die in hospitals are conscious right up until the last second. Most of them are aware because they've been artificially kept alive.

So, for Terry's sake and her family's sake and the sake of yourself and your own loved ones, please, please find a moment if you haven't already and really consider the very real possibility of finding yourself in a situation where you cannot decide for yourself if you'd prefer life or death, and discuss it openly and honestly with anyone who might have to make that decision for you. Americans are hesitant and in some cases even aghast at the idea of discussing death or anything relating to it with each other--especially when it comes to parents and children, even if the parents and children are all adults. The fact is that we all die, and many more of us than anyone may realize are affected by the deaths of others all the time. If you think you can put it off or ignore it, then be aware that some day you may end up bedridden indefinitely and in the news like Terry has--your family in turmoil for years, all monies gone to your care, your children or spouse or anyone who cares about you watching you wither or just never change, never communicating or hugging or smiling again...

Choose your own fate now. Don't allow yourself or anyone you care about to become the next Terry Schiavo... I don't mean you shouldn't keep that person alive as long as necessary, as long as there's hope, for as long as you can and there's someone who loves them, but for God's sake, let others know ahead of time what your wishes are, or what your wishes for (heaven forbid) your small child are so that if things ever go that awry, at least everyone's clear what the plans are and (hopefully) any excessive ruckus and emotional turmoil can be avoided.

None of us knows how or when we will die, but that's no excuse not to prepare ourselves and our loved ones for it. Here are some resources to assist you and your loved ones:

*Last Touch:
Preparing For A Parent's Death
by Marilyn R. Becker

*Talking About Death Won't Kill You
by Virginia Morris

*When Children Grieve
by John Janies, Russel Friedman,
and Dr. Leslie Landon Matthews

*Hospice Information
1-800-331-1620
Hospice HelpLine
1-800-658-8898
Hospice Association Of America
202-546-4759

*The Power Of Attorney Book

*Partnership In Caring
1-800-989-9455

*National Right To Life Committee
202-626-8800
www.nrlc.org