I have been struggling with this for a long time. I have personal experiences with this subject. My grandmother was very ill for a long time. She had a progressive disease with no cure. She had Congestive Heart Failure. She had emphysema. She had one lung that continued to fill up with liquid and no amount of increased lasix (diuretic to decrease fluid in the body) could fix over time. She had multiple strokes which continued to slowly erode her physical ability. She had spots on her liver that they suspected were cancerous, but she would not let them biopsy.
She had told me and many others that she did not want to continue like she was. She knew she was dying. Many years ago, she had told me that she had a dream that she would die by drowning. She had this dream when she was very young. She was always afraid of water and refused to learn to swim. I even remember as a youngster that she would not even go into the shallow end of a pool unless she had on a life preserver and someone, preferably my grandfather, near by.
I don't know if this was prescient or not. In the end, she was drowning, just not in the way that she thought it would happen.
That must be the one problem with prescient visions, they are never really clear.
However, after she was diagnosed with CHF, my grandmother believed that she had seen her own death, but it was the irony that she never realized what it meant.
I'm not really here to talk about this, but I thought it was interesting to mention. I think I should also mention that it was not "drowning" by CHF that killed her.
She told me many times that she did not want to live to fulfill that vision. She told me and many in my family, if the time comes, she did not want to end like my grandfather, hooked up to a bunch of machines with her body and mind slowly shutting down. Everyone she told nodded their heads and agreed they wouldn't let it happen. But, in private moments, some, including my father, talked about not just giving up unless it was a foregone conclusion, unless there were no longer brain waves. He didn't want to be the one to decide that it was time for her to be let go. He had to make that decision on my grandfather and it still haunts him today.
Certainly, with modern medical technology, one could be kept alive far longer than expected, but, in many cases, it is only a short prelude of a few days or weeks before the rest of the body begins to shut down and they eventually die.
I knew what had to be done to protect my grandmother's wishes. After she was hospitalized for pneumonia and the spots were found and the prognosis for CHF was not good, I looked up on the internet and found the website for living wills and advance directives in the state of Missouri. Each state has it's own legal language necessary to be considered a viable living will. I also retrieved a "Durable Medical Power of Attorney" and a "Financial Power of Attorney". I went to visit my grandmother several days after she was released from the hospital. I stayed for several days and watched as she had good and bad days. I waited until she had several "good days" because I wanted to make sure when we talked about the decisions to be made that she was not under any duress from her physical condition that might interfere with her mental capacity.
I sat down with her and went over each of the forms. First, we did the "Financial Power of Attorney" which we discussed and gave to my cousin with whom my grandmother lived. This made sense as she was the one who would be the closest to my grandmother to help her when she was no longer able to over see her own affairs which she did right up to about a week before she died. Really, she had no assets, no retirement funds, no bank accounts which would be considered any inducement for anyone to act outside of her best interests, so that made it easier. Just a social security check and the need to write checks for paying for her prescriptions and few other medical needs and continuing to pay her premium for her life insurance policy which was just enough to pay for her funeral expenses with an incredibly small amount left over.
Second, we discussed the "Durable Medical Power of Attorney" and how it gave someone the power to make medical decisions for her should she become incapacitated. This is not a living will in and of itself and can be challenged, though with difficulty, by any family member that has a closer relationship than the person who it is assigned to. After discussing it, she made both me and my cousin co-powers of attorney. This may seem counter intuitive, but we did not do it without some other measures and long talks with both my cousin and I to insure that we were on the same page about what was to be done. It was both of us because I traveled so much and I was concerned about being available to make the decisions. Still, I didn't leave it at that.
Next we completed a living will which was very specific in what would or would not be done in the case of certain medical emergencies. This included things like with-holding intravenous anti-biotic treatment, intravenous food or hydration delivery, tube feedings of food and water, ventilation to assist with breathing, cardio-pulmonary resuscitation and a few other invasive and non-invasive "extra-ordinary" endeavors.
Being a worker in the medical field, I understood what each of these items meant in both measures of saving, if utilized, and what it meant to die under those conditions. I explained them explicitly to my grandmother and cousin. I didn't want any of us to be under any delusions about what we might experience.
All of the decisions on what to with-hold were made by my grandmother. Even after I discussed at length my problems with with-holding food and water, through whatever means, under circumstances where she was not incapacitated accept by the means to feed her by mouth, my grandmother opted to choose to with-hold these life saving measures as well. It pained me considerably, but it was her life and her decision, not mine. I was only the conduit through which in the future the decisions would have to be approved.
Finally, we wrote out and put on file a "Do Not resuscitate" order with the local hospital and her physician.
Her last request to us was that she be allowed to die at home and not taken to the hospital. As her condition worsened, we arranged to have in home nursing and other medical equipment to make her more comfortable.
Six weeks later, my grandmother experienced several mini-strokes. She was in severe pain. I was traveling to our corporate office when it occurred and was only notified when my grandmother, in severe pain, asked my cousin to ignore her request and take her to the hospital. Mainly because the physician would not order any pain medication until he had seen her and he didn't make house calls. Even though the home care nurse had several conversations with him about the levels of pain and the probable causes. In the end, the doctor was a bit old fashioned and he could still wield some power over the treatment.
It took me four hours to fly home and three hours to drive down to where she lived. I arrived only twenty minutes before she passed. We had several discussions with the hospital staff regarding her condition. They could not and would not prescribe any pain medications because that would slow down her cardiac functions and they believed that she was already suffering from this problem. At the same time, they recognized her power of attorney and living will and were not making any other extra-ordinary efforts. This is the one thing that still bothers me today.
She was not catatonic but in a strange state where she was neither comatose yet neither coherent and fully awake. She continued to cry and moan in her strange half state about the pain as well as many other delusionary moments when she thought she saw her long dead father and mother as well as some other people. On other occasions, even without her eyes open, she seemed to recognize that my cousin and I were there and said often that she loved us. On one occasion she accused us of lying to her because, of course, we had taken her to the hospital and she was dying there even though she had asked for it in her more lucid state. Neither my cousin nor I made any comment to her regarding it. We didn't think she really understood.
Eventually, she drifted off into her semi-comatose state where her communications were simply moaning and thrashing around a bit on the bed because of the pain. Her eyes were not open and she did not respond much to our words.
I have written about it before. I will say again that the hardest thing I ever did in my entire life was to hold her hand and sit by her bed while she died without lifting a finger to help her. She passed at 11:41 pm from an infarction in the brain. No one else was there but my cousin and me. I really didn't have time to lose my composure because my cousin did immediately. She held me so tight with her arms around my neck sobbing that, for a moment, she was near choking me. What could I do but hold on to her as tight?
Finally, we had to sign some papers and call the family.
I have only had a few discussions concerning the Terri Schiavo case. I have had a very difficult time in discussing it because I have been both Mr. Schiavo and Terri's parents. I feel both the resoluteness that I did as my grandmother wished and the pain (and yes, guilt) of being the person who carried out those wishes as well as the person that wished that she would live forever, that I could come back the next week and drink tea at her kitchen table, discussing world events and family happenings, getting advice or just listening to her talk about her life.
Written documents attested to and signed by the person does not make the decision making process any easier on the person making those decisions. It really only gives an outline by which you can function. It did not, for me nor my cousin, really alleviate the pain or assuage the guilt. It only balanced it with the knowledge that we did, in the end, do as she had asked.
I will now tell you the other secret that we hold between us, my cousin and I. Both of us discussed the matter of with-holding tube or intravenous food and hydration and had determined that, if that was the only thing wrong, we would not abide by that request. As Durable Medical Powers of Attorney, we could over-ride the living will. We would not abide by that one request because it is not death by a medical condition, but by starvation. We both knew, if it came down to it, that eventually, her medical conditions would take her, but I would refuse to stand by that order if it meant, in a very real since, killing her slowly and quite cruelly if the other conditions did not first take their toll.
Maybe I am splitting hairs. Certainly, with-holding other treatments could be considered just as tantamount. Maybe, if there is a God, he will consider me a murderer after all for not attempting to save one of his creations by every means necessary. I don't know and will leave it up the Creator to decide on judgment day. But, it just seemed that, that one condition, was worse than any others.
So, I am speaking here from experience, yet I did not have to struggle with that decision as that is not how she came to pass.
In the case of Terri Schiavo, I see distinct differences and distinct parallels. The many problems with this case include the fact that living wills were not the norm over a decade ago when Terri suffered her injuries. If they had been, it is quite likely that we would not be having this discussion at all because Terri would have died back then. This causes me some concern over the situation of the case. Frankly, it seems that Mr. Schiavo had either cause to believe that this would not be her final condition, whether through medical assurances or by faith, or that Mr. Schiavo had no intention in the beginning of adhering to Terri's request way back when she was first injured. Or, lastly, maybe he didn't really know what Terri wanted because she never said and he was just going along with what the doctor's suggested for treatment because that is how it was done way back when.
I'll tell you that, until very recently, it was actually very rare for people to discuss these possibilities. Particularly young people. Most of us in our twenties think we are going to live forever or, at least, for another 50 or 60 years so it never crossed our minds. It never crossed mine although, it is a possibility that I said in one offhanded moment or another that I would not want to survive under certain conditions, I'm not sure who I said it to or whether they would ever have any input in those decisions.
Who knows the truth except Terri Schiavo in this case and she can't speak for herself. Not in anyway that would be considered competent and recognized speech.
The other differences between Terri Schiavo and my grandmother are much more apparent. Terri Schiavo has no other known medical condition that is terminal. Brain damage is not terminal unless it is the type of damage that controls bodily functions like heart beat, liver and kidney functions just to name a few. While being unable to swallow might have proved terminal in 1880 because no one knew of tube or intravenous feedings, it is certainly not a terminal condition. Unless, of course, you stop feeding the patient.
Have we decided that, like all those who researched eugenics in the 1920's and 30's, like those of Nazi Germany and those in Europe now who decide from whom the state health program can with-hold certain treatments from those we consider incapable of living a full life as we would live it, we get to make the decision of who lives and who dies? Have we decided that the weakest and most vulnerable among us should die or be killed like a pack of animals?
We find ourselves in a difficult position. I find myself in a difficult position because I fully believe each person has the right to decide how far they want to go, in what condition they would want to live if there life is to be cut short. But, I also find in there that there is still some moral ground on which to stand, as narrow as it may seem. A person that is not terminally ill but may be paralyzed will not have the same life that I do today, but it does not mean that they can have no quality of life. A child who has down syndrome or chronic illnesses such as Crohn's disease or CF may never have the same quality of life nor length of life that another fully healthy child may have, but it does not mean that they cannot have any quality life nor that they are less valuable. In these conditions, they are living and not dying and I would not have us legalize assisted suicide or homicide in these cases because it would simply be a decision based on depression and mental anguish. These are not decisions based on dying.
Terri Schiavo may not be the woman that she was a decade ago, but it does not mean that she is less deserving of care or life.
Maybe, someday Terri will catch pneumonia or her degenerating body may cause other body functions to begin to shut down. Then, if she is alive beyond March of this year and her parents are caring for her, they will have to make the hard decisions and they will be hard.
We have entered into the "slippery slope" that so many have talked about. As a person that worked with my grandmother to take advantage of that first step, I now find myself an accomplice to the next slippery slide down that step, the one in which we have gone from decisions of and for the dying to decisions of and for the living.
Maybe this is about eugenics. Maybe it is about how we have come so far in controlling our lives that we want to control our deaths, never realizing that this is truly the one thing that we don't control. Yet, it would appear that there is some fear in that and so we have begun to decide on how we will take back that control if in only some small part. This may be, as some claim, the direct cause of loss of faith in something greater and the advent of human power over humanity. Like the actors in "Final Destiny" we are trying to control that destiny and, if we can't out run it, at least dictate how it will end.
I realize that there are other issues about cost of care and possible insurance money. I didn't really address it because part of me understands that Mr. Schiavo, even if he were to receive any life insurance, is most likely in debt up to his eyeballs and would lose it immediately to those debts. The on-going cost of care is not an issue for Schiavo either as he has been offered by the parents to divorce her and allow them to take guardianship which would place all of the financial burden on them. I believe they even offered to sign a contract absolving him of any future care or cost. I can't imagine this is financial which is why the courts, as much as they may have wanted to do otherwise, could not find that his guardianship of his wife was voided by his potential economic gain.
Unfortunately, it is most likely the only decision the court could make a decision on, who is the guardian and thus who has the power of medical decisions. There have been many Terri Schiavo's before and there will be many after her. We stand here on the precipe. It is not the law that decides who is alive or dying and they did not make that decision. The courts and the law, in the end, do not want to make those decisions because it could and would open up entirely new frontiers wherein even people like my grandmother could not make her own health decisions and wherein her doctors could be held liable for not taking every necessary step to keep her alive and could be charged with murder and I and my cousin as accomplices.
That is the other side of the slope on which we stand and we should recognize it clearly while we discuss this issue.
It is not the law in which we should look for the saving lest the law be used against as much as for.
If there is a law to be found here and should be considered above all others, that is that Terri Schiavo cannot speak for herself. It is Terri Schiavo that must be protected as a vulnerable person under the law. Above both Mr. Schiavo and her parents, it is her inability to speak for herself that should insure that the law protects her even if she is never able to speak for herself again. Above questions of rightful guardianship, when Terri did not and cannot speak for herself, the law must extend that protection to her and not allow the decision of guardianship to be the decision on whether she has the right to live or die.
The law today is too garbled because we are afraid of interfering in people's rights and we have attempted to avoid that interference by making no such laws or setting no such precedents. Instead, you see the law falling back on the only known law and that is decisions of guardianship. That is what you see in Florida today. Unfortunately for Terri Schiavo, the lack of law and precedent will most likely result in her losing her life.
We are afraid to make those laws because, even though today allows for written consent and direction, there are many out there who do not have any such legal documents under which to protect themselves or their rights. Believe me, in my field, I completely understand the questions because I know we in my field have gone to extra-ordinary lengths to keep people alive. That is what we do. I am not sure that, in any capacity, I want to be the person that tells another that we cannot remove their loved one's vent when they are clearly dying.
We are afraid to make those laws because, if we try to define "life", the next steps will be in using that definition against abortion (and that is another discussion), against the study of embryos or use in genetic research (that also is another discussion) and, even, against the death penalty. However, I think that time is coming soon when we must engage and decide, when we can no longer avoid it as many push the boundaries of what is not defined by law.
In the end, it is our own understanding of what life and death means. This is the "morals" and "values" that people like me talk about, not those outlined strictly by the law nor simply set down in a religious text. It is what is inside of us all: the capacity to care and the capacity to do harm.
To me, the question is: Is she dying or is she living?
To me, the answer from the medical field should be the fall back to, "First do no harm."
To me, the answer from the law should be simply to protect the living.
Tuesday, February 22, 2005, the law will not have changed. It will still find itself balancing on the top of the slope, trying desperately to not take a step in either direction having only decided on the law which is at hand, who is Terri's guardian.
Tuesday, February 22, 2005, it is we that will change when Terri Schiavo's feeding tube is removed. We will have turned the corner on our own humanity and taken the next step down the slippery slope where people like Dr. Kevorkian and anyone who is not the patient who has been recognized as a legal guardian can decide with or for the patient that, living they may be, but dying they can do and dying is better than living.
Here in we must recognize the nihilism that has infiltrated our society and be prepared for the ever faster slide into ignominy.
There are people on the other side who will say that this does not have be that slippery slide. This is only one small step and, to them, it is a step up. This is our ability to control what becomes of us. This is our ability to decide how we can or want to die. To "die with dignity" they say.
Terri Schiavo is not dying, but she will and there will be little dignity in that death as there is little dignity in any death.
There are some that say that this is Darwin's theory of evolution at it's finest. Only the strong survive. I would say if you must apply an evolutionary theory, it is that creatures evolve beyond what they once were to what they can be and we have come a long way in our evolution since we last left our weak on the plains to die in order to save the tribe and there is nothing to show that our "tribe" is in danger of dying by caring for Terri Schiavo.
Although, I would say conversely, that her dying from this act may well be the portender of the death of our "tribe".
Update 8:37 AM CST:
Schiavo news
Terri's Parents Statement
Micheal Schiavo's Statement
For the record, on pain of any more attempts at convincing anyone that this whole situation is wrong, Mr. Schiavo states that he finally understands that there is no cure for Terri and she should be let go. Note that, while I talk about "incurable" diseases, I mean them in the terminally ill, this will kill you, category, not brain damage which is not terminal in Terri's condition. This isn't about whether she is "curable" or could ever function again as she once did, but whether she is living or dying or dead. I submit to you, she is not dead nor dying, but living. At least, for today she is.
Update 9:10 CST:
Terri's Fight Go here and watch the videos. The one called "Terri Responding To Music" is absolute proof that she can and does respond to stimulus. Somebody is lying about "persistent vegatative state" or is at least widening the definition beyond its original intent.
Update 10:41 CST:
Still no news on whether the tube was removed. Just found this article from January 27 in the Detroit Free Press and noticed that there is a significant contradiction:
But just as no one should hasten another's death, neither does anyone have the right to prolong someone's life against that person's will. This isn't outsiders condemning others to death; it's people choosing how they want their own lives to end.
In Terri Schiavo's case, her husband communicated his wife's wishes to doctors after years of pursuing methods to revive her.
So, you understand, first, people have a right to choose how to end their own lives, but it wasn't Terri who communicated the desire, but her husband. So who is choosing how they live and die? Secondly, as I pointed out before, there is a significant contradiction in what Michael Schiavo tried to do before "pursued methods to revive her" and what he says she wanted done "not prolong her life".
Well, Mr. Schiavo and Detroit Free Press, which was it? She wanted to die or she wanted to live? If she wanted to die, why did Mr. Schiavo continue to seek "methods to revive her"?
If that's not funny enough for you, an op-ed in the
Toledo Blade almost gets it right by explaining why it is the judicial branch didn't want to interfere in anything outside of deciding who was her legal guardian, but, as usual, makes a little blunder, too:
The unfortunate fact is the Schiavo case has become the centerpiece in a raging debate between right-to-die and right-to-life combatants who have taken the last shred of dignity from a wife and daughter reduced to dying by degree.
Now, isn't that funny? I mean "dying by degree". As we noted, Terri does not have a terminal illness. She is brain damaged, but it is not killing her any faster than you and I are dying. As a matter of fact, we are all "dying by degree" every day because we are all dying the minute we are born. Maybe we should all just throw in the towel and drink the kool-aid since we're "dying by degree"?
On the last note, try reading this piece:
But the tragedy has been blown into an international cause celebre with legal impediments that prevent the poor woman from resting in peace.
How about people like Michael Schiavo and this dunder headed op-ed writer are impending this poor woman from
living in peace?
Update 11:40 AM CSTOr, how about this little gem from
St Petersburg Times an anonymous "staff writer" having done a decent job of describing the legal process and issues of state and federal law, why they can't interfere, lapses at the end with their own little plug about "painless" death:
People can live two to three weeks without food or water, said Ronald Schonwetter, director of geriatric medicine at the University of South Florida. Last year, Schiavo's tube was removed for six days until Terri's Law was passed. Most experts believe that lack of food and water results in a relatively painless death, Schonwetter said. People sleep more and more as their organs shut down. Then they lapse into a coma and die.
Yet, here on
this medical website about the importance of hydration, they seem to be saying something other than what Mr. Schonwetter and the writer said when they talk about joint pain because your cartiledge is made up of part water and lack of water causes it to shrink; lower back pain from the same; migraines, etc. Severe dehydration causes your body functions, like kidneys to shut down. Have you ever had a kidney or bladder infection? Painful, isn't it. How painful do you think your kidneys shutting down would be? We're only talking dehydration here and the site doesn't talk about you going into a coma or "sleep" before it starts happening. It talks about you going into shock. In which case, it means you are aware that it's happening and the only way you would not be able to communicate the pain is if you were in a coma already.
Or
this article:
Blood pressure sometimes drops so low it can not be measured, and skin at the knees and elbows may become blotchy. Anxiety, restlessness, and thirst increase. After the patient's temperature reaches 107°F (41.7°C) damage to the brain and other vital organs occurs quickly.
Well, how painless is that? Maybe somebody should check out what Mr. Schonwetter has been doing to free up beds in his geriatric center?
What about starvation? According to
this site, it doesn't sound very painless. Liver failure painless? Heart failure painless? Kidney failure painless? Rectal bleeding? Regression of organs? Or
this site:Hair is thin, tightly curled, and pulls out easily. Joints ache and bones are soft and tender. The gums bleed. The tongue may be swollen or shriveled and cracked
.
One wonders if either the writer of the "painful" piece or Mr. Schonwetter has ever tried starving for a bit?
Update 12:59 PM CSTAccording to
Blogs for Terri, Judge Greer, who is over seeing the case, has issued a stay (of execution) until tomorrow, Wednesday February 23, at 5pm. No info on what changed his mind, but stay tuned to this blog or
Blogs for Terri for updates.
Friendly AdviceYou are already protected under the law. You can decide how you will live and how you will die. However old or young, whatever your medical condition, you can decide how you want to be treated as long as you are the legal age of consent and are not deemed mentally incompetent. If you have not done so today, you should immediately write a will. You can find out about how wills, property and probate work by going to
Free Legal Advice. You should also look up your
state's laws on what is an acceptable will or other legal language required. As there is no federal law on either advanced directives/living wills, trusts or legal wills regarding property, each state has their own laws and language. Most states do not accept hand written wills, even in your own hand writing, unless they follow certain guidelines. This includes whether or not these documents have to be notarized, how many witnesses, if any, etc.
If you have any property, valuable assetts or significant funds that are not already assigned directly to a beneficiary, you should consult an attorney. If you have sole custody of children from a previous marriage, you should know that, upon your death, your ex-spouse can sue for custody and can become the legal guardian. The legal guardian of your children can access any trust funds or manage any property in their names as long as the child is under the legal age of adulthood in their state if that property, beneficiary monies or trust funds are not protected.
Even if you believe that your loved ones know what you would want done in a situation where you are incapacitated, you should insure that your right to deny or demand treatment is protected by writing an advanced directive/living will. You can find the correct form for your state
here or
here or simply look up "advance directives" followed by the name of your state to find your appropriate form.
You should also be aware that there are two types of power's of attorney: Financial Power of Attorney or just plain "Power of Attorney" and "Durable Medical Power of Attorney". As they indicate, the Financial Power of Attorney only gives your designated representative the power to take care of your finances. They are not deemed the legal representative for your medical care. "Durable Medical Power of Attorney" only designates a legal representative to make decisions on your medical care. Even if you have a "Durable Medical Power of Attorney", you should still have "advanced directives" on your desired care.
Again, it doesn't really pay to be cheap when you have money, property or children to be concerned about. Go find an attorney and get your will done. Powers of attorney and advanced directives do not require an attorney but you may wish to keep copies of all of your legal documents with this person.
As you can see by the two situations we have talked about, leaving these decisions unwritten can leave your family unprepared.
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