Thursday, March 24, 2005

Welcome to our discussion

The Terri Schiavo case has stirred some strong emotions in all of us. We've set up this forum to give you the opportunity to discuss the issue. Which is more important _ the sanctity of life or quality of life? Are they in conflict with one another? Even though the law is clear that artificial nutrition and hydration is a medical treatment, just like blood transfusions or kidney dialysis, why is this so hard for people to accept? I have been writing about this issue for a long time. I'm happy to answer questions if I can, or share my thoughts. I'm also interested in hearing from people who are facing these difficult decisions. I learned long ago that the best way to reach readers, to help them understand, is by telling them stories of real people. -- michael vitez

14 Comments:

Blogger archman said...

Unfortunately I am very familiar with the kind of situation that Terri Schiavo's husband is in. Almost 4 years ago to the date I was faced with a similar situation. My wife had a heart attack that deprived her from oxygen to her brain for too long and was in a persistent vegetative state for almost 3 months. My wife didn’t have a living will either. From what I do know (many long conversations with doctors and much reading) very few if any people have “recovered” from this condition. It is a horrible state for a person to be in. Also sometimes the person actions can very easily be interpreted as signs of recovery. The person may “recognize” your voice or their eyes “follow” you. Unfortunately, again from what I know, this is merely a reflex reaction. I too held false hope that my wife might be awakening from this condition but was told otherwise from many doctors. A person in this condition has been reduced to only reflex actions and nothing else. It is a horrible condition only made more complicated by not having a living will (a lesson everyone should have learned from this public case). Thankfully both my family and my wife’s family were supportive of many very difficult decisions I had to make. I can not imagine the additional pain that Terri’s husband must be going through due to the differences between his and her family over Terri’s care. Both Michael Schiavo and Terri Schiavo are in a no win situation only made worse by the legal fighting being played out for all the public to consume. This should be a personal matter with decisions made by the family hopefully in total agreement and if not, then by her husband, not the government. As I said above, nobody will be the winner in this case.

4:03 PM  
Blogger JHS said...

How can withholding food and water not cause pain to the patient? Is there scientific evidence for this? Mike S. has said to the media that Terri would not experience any pain that way--but how can he be sure?

4:19 PM  
Blogger Joe Joe said...

This story has become a tragedy with no winners; only bitter memories that will last long after Terri Schiavo's death. My mother was in Our Lady of Lourde's Hospital - the Doctor's told me the options available to her due to old age and a failing heart. She was brain dead. The decision to let her die peacefully was made privately. It was still a difficult one to make, but if there is a heaven, she surely was already there, just her earthly shell remained.

If the right to life forces want to intervine in these kinds of decisions then I suggest they do the following:
1) offer to pay without Government assistance for care to anyone in a vegetative state
2) Offer to pay without Government assistance to raise any fetus they want to save from abortion.
3) Offer to pay without Government assistance to take care of all american children waiting for adoption. Then the rest of us can get on with our lives and Congress need only meet in the middle of the night in emergency session to BALANCE THE BUDGET!

5:01 PM  
Blogger Gina said...

What bothers me about this case are the alegations I have read in various places about possible maltreatment of Terri by the husband, and his not allowing her to have recommended rehabilitation in the early 90's. The fact that he had her medical records sealed. I just am not sure that he should be the one to make the decisions. Maybe if he had not kept her parents out of it back in the early 90's they would have come to the conclusion that there was nothing that could be done and would agree to allowing her to slip away. I honestly don't blame them for fighting it. They think her husband is hiding something from them and that bothers them. Is there any merit to the allegations against the husband? I don't know for sure--but something tells me there is something wrong there. I think a nuetral party should take over her care, do an evaluation, and then make a decision and follow through on it with no interference from either side.

What if she can swallow? What if she can survive without the feeding tube. From things I have read--some of her caregivers said she could swallow, but her husband forbid her to have food or water by mouth.

There was a mistake (or many) made a long time ago. But I think it is to late to do anything about it.

5:19 PM  
Blogger Carol said...

http://www.dailykos.com/story/2005/3/22/194615/400

1:00 AM  
Blogger Carol said...

the above link points to a history of Michael...

I think he has been a loving husband who was very active in the care of his wife. She hasnt had a bedsore in all these years and that says something.

The family gave him permission to date and introduced him to his fiance.

1:02 AM  
Blogger momof22 said...

Schiavo case and beyond
Here are some of my musings and ruminations regarding the questions and issues that the Schiavo case brings up for me:

I have two children who are severely disabled, terminally ill and fed by feeding tubes. And they are wonderful and precious to me and to our family.

However, I am also a big believer in not prolonging life just for the sake of prolonging it and I do believe in DNR orders and I believe this is a decision that needs to be made BEFORE starting on life support. Having said that, I need to add here that I do not necessarily consider receiving nutrition through a feeding tube to be in the same "life support" category as other interventions. As for our children - we are not going to allow so-called "heroic measures" just to prolong their lives if and when it comes to that time. On the other hand, - and this is critical - we do not view feeding them and providing them hydration (water, etc) to be in that category and I can never anticipate a time or reasons when we would stop providing those basic necessities to them.

However, often there is much more to the story than a simple matter of "leaving on" or "turning off" a switch.

In regard to feeding tubes, unless you have actually lived with people who rely on feeding tubes for 100% of their nutrition and hydration, you do not understand the complexity and gray areas involved in this type of discussion. It is not a simple matter of deciding to "leave it on" or "turn it off".

Some people, like a close friend of mine, who are on feeding tubes for a specific reason but have no other infirmities or disabilities can have a very normal life with very few complications from the feeding tube and food intake.

However, for many others, including my two children, in addition to needing to be fed via a feeding tube, they have many other medical complications and other systems that are breaking down or not functioning at optimal levels and one thing impacts another each time a change occurs or a decision needs to be made.

Let me give my example.

We have a son who was a "shaken baby" when we adopted him and he has multiple and severe disabilities and brain damage. He lives at home with the family, he is a highly valued and deeply loved member of the family. He attends school and he gets his medical care through one of the children's hospitals consistently ranked best in the world.

He receives all of his nutrition and hydration through a feeding tube, a special kind called a "G-J" tube. The tube needs to be changed (a medical procedure done in the hospital) every few months. Every time it is changed he suffers at least a week to two weeks of "adjustment period" during which he is very sick, vomiting, pain, distress, discomfort, etc.

Doctors/scientists have come up with a "formula" for the amount of food (quantity) and fluids he should take in over a 24 hour period for optimum nutrition and hydration. If he takes in this amount, he is well-nourished and well hydrated and all his electrolytes are at proper levels.

However, if he takes in this amount of food, his other systems cannot process it well. He becomes severely constipated. He has extreme pain and discomfort. He vomits. Then, he gets rashes and skin break down from the vomit, he risks aspirating and getting pneumonia (which has happened to him more than once) and other complications. THis is true no matter what we have tried, in consultation and under the supervision of the best hospital and some of the best doctors in the world. It doesn't matter if we change the type of food, the rate at which he takes it in, or any other potential variables etc. His system just cannot handle it and he is in pain and miserable.

However, if we give him less than this amount, he is peaceful, relaxed, interactive and happy. He is comfortable. He has some joy and pleasure in his life. But at the same time, if he is not getting this full amount of feeding and water, he is very slowly getting malnourished and dehydrated. His electrolytes get out of whack.

While we are confident that we will NEVER "turn him off" his feeding tube - That is not a consideration or option - every single day we are faced with decisions about whether or not to give him the full recommended amount of food and water and watch him suffer in pain and discomfort, or give him less and allow him a day of pleasure, joy and comfort. EVERY SINGLE DAY we have to make these decisions.

THese are the types of decisions that face people caring for a child or a sibling or a parent or a spouse with multiple, complex, multi-system disabilties. THey are rarely simple or straightforward or one-size fits all, or make-it-(the decision)-once-and-be-done-with-it.

My point is that sometimes you can have complexities in life where two standards that you hold equally dear are in conflict with each other and then what do you do?

For example, in the scenario above - one I live with every single day - we have a standard of valuing life above all else and providing the absolute best in terms of care, nourishment, etc to each of our children including the one I was speaking of. We also have a standard of doing everything possible so that our children can be free of pain, comfortable, have joy in their lives and the ability to interact at their fullest potential with the people and world around them. And yet the feeding tube and related issues for this child put those two sets of standards or values into conflict on a daily basis. If we "live by" one set of standards every moment, every day in his care, we are neglecting or denying the other set of standards and if we "live by" the second standard, we are compromsing the first.

So how do you respond to situations that are not so clear cut, not so black and white, situations where two closely held values are in conflict and you cannot possibly do both? People do face Sophie's Choice situations in the real world every day.

These are complex and excruciatingly difficult situations and each person and family needs to search their own heart and soul and support system (extended family, church, medical professionals, etc) to assist them in making the decision that is right and best for them for that day - when you are dealing with these life and death situations, you revisit these decisions EVERY DAY. You don't just make it once and it is done with.

These are not decisions to be made by Congress, politicians or the courts.

The thing that I find so disturbing in the last week is the political grandstanding and posturing of the politicians from Governor, the President, and members of Congress for this one case while AT THE VERY SAME TIME they ALL are making decisions that will ADVERSELY impact hundreds or thousands of other people who need the kind of care, feeding tubes, etc that they claim they want to preserve for Terri, yet they are cutting it off for other people. Why is that? For example, the case of Sun Hudson in Houston is so disturbing to me and yet no one is talking about it. Perhaps if I were his parent, I would want the life support discontinued, but the point is -it should be the parent's decision, not a law called "Futility of Care" . . . . . . unless we are going to agree as a society to impose that standard on ALL citizens not just the poorest.

Right to Life, Unless You're Poor and Black Compiled by the DiversityInc staff

This week, as Americans followed the legal battle over Terri Schiavo's feeding tube, a 6-month-old baby was "murdered" by Texas Children's Hospital officials, according to Arizona Republic columnist Mike Newcomb.

Against the wishes of Wanda Hudson, the boy's mother, hospital officials took Sun Hudson off a ventilator that was helping him breathe. The mother,a 33-year-old poor black woman with no prenatal care, begged the hospital to keep her child alive. "This hospital was considered a miracle hospital,"

Wanda Hudson said. "When it came to my son, they gave up in six months."

Ironically, the fate of Sun Hudson, who was born on Sept. 25 with a genetic disorder, was determined by the "Texas Futile Care Law," which was signed by then Gov. George W. Bush. The law stipulates that a Texas hospital, with the consent of a doctor and an ethics committee, can stop care deemed futile and too costly even if the patient's parents or legal guardian is against the action.

"Where were all the right-to-lifers when it came to baby Sun Hudson? Wherewere the special midnight sessions? Where was the due process for baby Sun?

Where were Tom Delay and Bill Frist?" Newcomb asks. "If you're poor, a minority and costing a hospital corporation too much money your life is meaningless."


OK, have you seen the position of the President and many in Congress on Medicaid funding -???? Terri Schiavo is on Medicaid. A significant portion of Terri's hospice costs are paid by Medicaid, a program that the both the current administration and many in Congress are currently in the process of sharply reducing. For 6 years I have been involved with an effort to get a bill passed called the Family Opportunity Act that would allow working families with children with disabilities to have access to Medicaid (paying into it on a sliding scale)to help them provide for their children's care without having to give up custody of their children to the state (as is currently the case in many instances) and yet we cannot even get Congress to take it to the floor for a vote - in SIX YEARS. And this would impact THOUSANDS of children - some like my son, or like Terri, who are on feeding tubes and severely brain damaged, and others with much less severe disabilities.

In addition, some of Terri's other expenses have been covered by the million-dollar proceeds of a malpractice suit - the kind of suit that many politicians including the President want to eliminate or significantly reduce - and vilified John Edwards for having been an attorney who handled these kinds of lawsuits.

It is inhumane and hypocritical to say we - as a society - value THIS ONE LIFE - this one woman - enough for Congress and the President to fly in from all over the country for midnight Sunday sessions, and dozens of court hearings - ALL at taxpayer expense, while at the same time make decisions supposedly based on fiscal responsibility that have the impact of dismissing the value of thousands of others lives all around the country. IT IS WRONG And I just envision God weeping over all of it - Terri Schiavo, Baby Sun in Houston and all the others around our country whose lives are being cast aside in the name of politics or - WORSE - in the name of indifference.

We need an honest, sincere, real genuine, humane, public policy that values ALL LIFE, for ALL PEOPLE, not just for the sensational cases that are politically expedient.

We are no where close to it yet.

5:42 AM  
Blogger deselby said...

I just want to thank archman and momof22 for sharing their experiences and their thoughts.

2:03 PM  
Blogger hilzoy said...

Hi -- obviously, you can write whatever you want ;), but I'd urge you not to cast the question as 'quality of life' vs. 'sanctity of life'. The crucial issue, both legally and morally, is autonomy: whether a person can be forced to undergo medical treatment against his or her will. In the Schiavo case, the court found that there was clear and convincing evidence that she would not have wanted to be kept alive with a feeding tube. Those of us who think that in such a case a feeding tube should not be forced on her are not making a judgment about how worthwhile her life is, or whether its quality outweighs something else; we are saying that her wishes should determine what should be done, whatever any of us might happen to think.

I have written about this here:
http://obsidianwings.blogs.com/obsidian_wings/2005/03/terri_schiavo.html
And in several other posts on the same site, if you're interested.

8:26 AM  
Blogger The Heretik said...

Michael Vitez? UVa '79? Stop by for a quick pop here

10:15 AM  
Blogger Indie said...

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4:22 PM  
Blogger Kahlie said...

Great info Michael Vitez. I'm glad I stopped by for a while. I am searching for related information for and found your blog. Welcome to our discussion makes a good read and I'll look forward to seeing more posts.

5:30 PM  
Blogger Indie said...

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12:55 AM  
Blogger Indie said...

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12:36 AM  

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