Peg Kerr&#39;s Journal

It is a good idea for all of us to leave written instructions for just such an emergency, I guess

I agree with you. Very much. I was sure to even have one before giving birth to my daughter. You just never know...

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kerri

*agrees*

And yet in a way, I can't blame her parents, because lord knows this must hurt them. I do think she's being held up as a symbol for other people's causes, though, and I think I'd hate to have my life used like that.

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jonquil.livejournal.com

The thing that is never mentioned in the stories is that the matters of fact have been decided.

Multiple judges have determined that the husband is the custodian of the wife, and that the wife did indeed tell him that she didn't want to survive in this state, and that she is brain-dead.

None of those facts ought to be in dispute.

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lsanderson.livejournal.com

If they'd televise Mr. Frist's interview with her on the national news. It would probably take care of what remains of his presidential ambitions.

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aome.livejournal.com

When I worked in a nursing home, we had two young-adult boys/men who had both (separately) been in car accidents with severe head injuries many years before. They both were receiving therapy because their families insisted, but in almost every case, by the time that much time has passed, there isn't going to be any further improvement. Every time I think about how long it's been for Terri, and how her parents insist she'll get better, I think about how she is long past the normal window for seeing the kind of improvement her parents are talking about. People talk about respect for life, and I understand that, but they're not respecting the life of the person who is no longer there. They are choosing the life of the people who are still living, which I consider selfish. It's hard to let go. It is. But I wish they would let Terri find her rest. My mother fought that battle a long, long time for my brother to find his rest.

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bethynyc.livejournal.com

Agree about the grandstanding and contemptible. And no one is saying who is paying the medical bills...at least not that I've read.

I'm planning to do a living will next weekend, leaving a copy with my parents and a copy at home, so there is NO DOUBT that if I'm flatlined with no chance of recovery, let me go so I can reincarnate or haunt them properly.

Actually, I'm rather looking forward to being a ghost someday. A long long way away.

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mereilin.livejournal.com

As an alternative point of view, I submit the following link:

http://www.terrisfight.org/myths.html

From:

whumpdotcom.livejournal.com

http://www.amptoons.com/blog/archives/2005/03/09/17-medical-affidavits-about-terri-schiavo/

Sorry, but thanks for playing anyway.

From:

morganmalfoy.livejournal.com

If you're going to disagree, at least be respectful. Someone disagreeing with you doesn't give you the right to be pendantic and condescending. Think whatever you want about Terri Schiavo, but it's no reason to be rude.

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mereilin.livejournal.com

Thank you. I'd just begun to regret having the audacity to voice any opinion at all. :/

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Why do Terri's family fight to keep her alive? Shouldn't they let her husband decide?

Terri's husband has started another family and probably has gone on with his life. Terri's family want to provide her therapy and a safe home.

That answer is very disengenuous. Whether her parents like it or not (and I'm sure they don't), Terri's husband IS her family. Courts are very clear: when a parent marries, the person who makes medical decisions in cases like these is the spouse. Not the parents. The parents are trying to do everything around it, but they can't without bending the law. Which is why they are trying to get special laws passed to make her case an exception. And that, I repeat, does not seem to me to be either humane, sensible, or good public policy.

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Evan agrees with you. I'm just reading up on the case, so haven't formed an opinion yet.

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Okay, have spent last hour or so looking at sites and becoming informed. It's really sad, but I have to go along with Evan (and you) on this one. I think they are being slightly deceptive regarding her condition. (I was almost convinced by the video) I also think that they have villified her husband, but you know, seven years is a long time to grieve. It isn't like he moved in with another woman the next day. I don't think his intentions are necessarily dishonorable.

My heart does go out to her family, though. It must be terrifying to let someone go.

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morganmalfoy.livejournal.com

While I personally disagree that Ms. Schiavo should simply die of thirst, I do agree that you should leave a living will. However, as you have no way of knowing the exact medical conditions that might occur to you, the best thing to do (as I'm sure you know, but you may want to share with your readers) is to legally declare someone your healthcare surrogate, thus clearly delineating who has the decision making power. If you only leave a living will and it says something like "I do not want to be on life support" then it opens questions like if being on life support for a few hours will prolong life just enough to allow surgery and recovery would be acceptable versus being on life support with no chance of life saving treatment. There is obviously a difference between treatment that is life saving and that which simply is delaying death.

Everyone should look up what their own state's law is concerning advance directives and healthcare surrogacy so that they can make informed decisions about their end of life or emergency care.

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Oh, yeah. Rob and I have talked about this. I've pulled up the paperwork for the living will and intend to fill it out and distribute it accordingly.

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jhetley.livejournal.com

So you stand in contempt of Congress? Probably have a lot of company....

("Senator, I have _nothing_ but contempt for this Congress....")

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cakmpls.livejournal.com

If only there were a more humane way than withdrawing hydration . . .

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If I were her doctor, I'd be tempted to help her along rather than let her die of thirst. But, there is that pesky euthanasia argument again...

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porphyrin.livejournal.com

Believe it or not, withdrawing hydration with adequate doses of medicine to keep her comfortable is very humane.

I've seen it done for babies that otherwise wouldn't survive.

There are a lot of deep-rooted emotional issues around food/water, nutrition/hydration and the end of life thereof. I'd *like* to be able to say that it ties in somehow to obesity, America, and our preoccupation with supersizing, but I can't.

I suspect it's something hardwired into the human psyche.

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porphyrin.livejournal.com

Er, that have no chance of survival. :P

Like a kid with a lethal chromosomal disorder.

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cakmpls.livejournal.com

Thank you for the information. My only experience with severe dehydration was when it happened to my mother when she was in a nursing home. That was an entirely different situation, and once everyone realized what was happening, she recovered from the effects (though not from the underlying condition, of course).

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Peg, my husband is on a feeding tube. He LEARNED something new last week, something that was totally left brain when he is, supposedly, totally right brain in his thinking. He CAN think.

One thing that no one seems to talk about is how that feeding tube got in there in the first place. If Mr. Schaivo is the legal guardian of his wife, he had to GIVE PERMISSION FOR THE FEEDING TUBE TO BE SURGICALLY INSERTED. It is S.O.P. for such patients. So, my question is, why did he let them put it in in the first place if he REALLY believes she doesn't want to be allowed to continue to experience life? If she believed so strongly, why didn't she have a living will, which would put her wishes in writing?

I personally believe that Mr. Schaivo gave that permission to insert the tube so that his wife would be kept alive for the lawsuit that they won. Now he wants to take the money which is supposed to be for her care and use it to make his new life with his new love. Therefore I truly believe that this man is no longer qualified to be his wife's guardian.

Starving to death over two weeks is a horrible way to die. There is also much we DON'T know about brain function. Terry's "vegatative state" is just an educated guess. Would you also kill all Down's Syndrome babies, autistic children and victims of traumatic brain injuey? Would you kill my husband? The docs though he would be in the same state as Mrs. Schaivo. Yet, with lots of work on both of our parts he can communicate and obviously has a quality of life and the ability to show love to me in many ways. His kids said it was up to me. They have sort of written him off as not able to understand. They are wrong, but one has to be with such a brain damaged person almost daily to see how they love life and interact with it all the time.

We disagree on this one, Peg. I understand your feelings and agree that it should be up to the person to decide. If they have a living will, then the decision is made. Once that tube has been inserted, however, nature has to take some other course to kill the patient. Otherwise we are playing God and I, for one, am not ready to do that.

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Look, I'm not advocating killing anybody. I don't know the medical facts in Terri Schiavo's case, and to be blunt, neither do you. And that's my point, and I should have been more clear in my original message: What I am finding contemptible is Congress's attempt to usurp the role of the decision maker. Under custom and under the law, the guideline is clear: the decision maker should be, must be, her husband. Whether people agree with him or not, and frankly, whether his motives are pure enough to suit others or not, the decision maker is her husband.

Yes, it would have been better if she had made a living will. Yes, it would be better if her parents agreed with Mr. Schaivo's decision. However, she didn't and they don't. And yes, for all I know, it may even be the wrong decision. But it doesn't matter. My opinion doesn't matter. Your opinion doesn't matter. Someone has to make this decision. And the courts have rightfully, following careful due process, determined that Mr. Schiavo is the one with the right and responsibility to do that, and they are following centuries of precedent to do so. No matter how you dislike Mr. Schiavo's decision, I think it is a big (and unethical) mistake to try to make an end run around that.

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My point is that he obviously made the decision to allow the tube in the first place. Therefore, just like me, he made the decision regarding her feeding tube. He now can make decisions regarding other parts of her treatment and can make decisions regarding a DNR order and such, but I think it is wrong to allow him to now change his mind about the feeding tube. She is in Florida. I am in Florida. The laws of Florida regarding the necessity of the guardian to sign before any surgery is performed are the same for both of us. That tube is only put in with a surgical procedure the first time. (It is changed every two to three months and that is not a surgical procedure. I do my husband's myself.) I also believe that he no longer has the best interests of his wife at heart and could and should be replaced as her guardian. I also know a whole lot about both brain damage and feeding tubes. I live with that every day and have for four years and three weeks. I have also followed her case in our papers long before it became a national thing. Therefore I know a lot more about her medical condition than you give me credit for knowing.

A lawsuit was won which gave millions of dollars for her care for the rest of her life. As her guardian, all he had to do, if he REALLY believed it was her wish not to prolong her life, was to refuse permission for them to do the surgery to put in the peg g tube. I would bet my life that it was not put in until at least two weeks after her accident. I know the procedures. We have a nurse in our family and I was up close and personal with brain injury twice with my husband so got to see the procedure in Florida. A N-G or nose feeding tube is used for the first couple of weeks or so as the patient must be pretty stable to properly do the peg g tube which goes directly into the stomach through the abdominal wall.

FWIW, if I didn't know the rules and procedures in this state, I would agree with you completely. Don't forget, I am guardian and health care surrogate for both my husband and my mother. A vascillating guardian is worse than no guardian at all. The man is, IMO, scum, not because of his other family and not because he believes prolonging life is wrong, but because his belief is only put into action when it won't adversely affect his finances.

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I can appreciate that this is a deeply personal topic for you in a way that it isn't for me.

There is one other consideration that hasn't been mentioned: Mr. Schiavo's report that this is what his wife wanted. I think that has to weigh here, too.

And as for him wanting the tube in and then, as the extent of her brain injury became fully known, wanting it out: I don't see in the least how that makes him "scum." When someone you care about has been badly injured, of course you want to do everything possible; you want to hope. But as he learned more, he had to come to understand that this hope wasn't going to be fulfilled. And that, of course, made that decision look different.

Look, I say this, of course, knowing that this is entirely speculation on my part. I speculate about his state of mind, thinking the best of him, I'll admit: imagining that he is a man put into an impossible situation, whose wife told him something that out of love for the memory of the woman he once loved, he is trying to carry out, against all possible opposition. You must admit that the conclusions you have reached about his state of mind, that he is an opportunistic and greedy man trying to steal money meant to keep her alive; that he wants her dead so he can be rid of her, is equally speculative. Fine. Fortunately, it's not the responsibility of either one of us to decide which is the true situation, which is the true state of mind of Michael Schiavo, and what was the true wish of Terri Schiavo. And I truly think that is the way it should be. The courts have a procedure to follow to decide who the decision maker should be. They have ruled that he is the decision maker. They have ruled that the decision has been made properly.

Yes, it is a tragedy. That is why we need laws, to cut the Gorgan's knot, to navigate our way through delimmas that are too difficult for the human heart to have to bear choosing. Anything done to interfere with that at this point, in my opinion, undoes the only guidance we have.

From:

papersky.livejournal.com

The medical facts are on Respectful of Otters, and it appears that she has no cerebral cortex left.

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Wow. What an interesting blog. I've added the RSS feed. Thanks!

From:

papersky.livejournal.com

That's my friend

rivka, who is always interesting and often brilliant, and if I'd realized you weren't aware of her blog I'd have put a link.

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Ah, I know

rivka, although I haven't read her journal lately. I've just added her back to my read every day filter. I hadn't been aware of Respectful of Otters, though, and hadn't made the connection.

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What's your husband's condition, and what did he learn?

Thanks. Sounds like a rough road you're going down.

Take care.

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My husband is a four year stroke survivor. He is paralyzed on one side, has no speech except a few grunts and the word "NO", is totally incontinent, has a feeding tube, will "pocket" even pureed food, tends to get pneumonia and/or bronchitis and urinary tract infections, alternates between diarrhea and constipation. I was told he will never learn anything and never get better, that I should just take him home and love him. He communicates yes and no with his good hand. I was told that he didn't know what he was saying because his mouth said no when his hand said yes. I found out that HE thought his mouth was saying yes and no and not just no. About two weeks ago I was about to pour his tube food into the hanging bag when he gave a distressed "mmmmmmmmm" and hit my arm with his good hand. I stopped and asked him "What?" and he hit the tubing with his hand and frowned at it. I looked and saw that I had forgotten to close the slide. Had I put the food into the bag it would have run right through the tube and all over the bed. That had only happened once before, the first time I set up the pump, about 18 months ago. Bill had, obviously, watched me set it up all those months and learned the sequence and saw that I had missed the slide. This would not be so profound except that he had never seen a pump set up before his stroke. He has only, supposedly, his right brain. Missing one very small part of a sequence like that is a left brain thing. Therefore I was doubly amazed.

Perhaps I should qualify my observations with a couple of facts. I have a masters degree in counseling. As part of my studies in California, I observed some of the mentally handicapped people who were just coming out of institutions after many years of custodial care. I also observed the children and adults at "Project Hope" which was a learning center for Downs Syndrome persons. I have also continued to treat my husband as if he could understand everything I said to him and have been pleasantly surprised at his ability to respond with facial expressions and even head nods and some head shakes now. People who don't know him and see him out with me at the V.A. tend to discount him. If he is feeling good and feisty, they only do it once. He has a way of letting them know he hears and understands and is not pleased with their condescending attitudes. I've seen a lot of open mouths and changes from pity to respect.

My biggest frustration is that many docs and therapists have the vegetative mindset and will not work with him in good faith. They want him to use story boards or word boards. They don't get that he was dislexic before his stroke and now having to use his least preferred hand to do anything makes it even worse. I understand why he confused bed and dog, but they said it was because he was a veg. and could no longer learn anything.

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I understand your perspective more fully; thanks very much for writing about it. David is right, it sounds extremely hard for both your husband and you.

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Right now he is getting a bath from his elder care CNA who comes three times a week. She brought him a bunny that plays music. He loves things like that. He then uses them to call me to change his pants. His smile is angelic and he even can tease us and does. He gives back to me too. When he knows I am tired I have caught him feining sleep so that I will leave him alone and take a nap. One of my best birthday gifts last year was his working hard while taking my hand and not letting go until he said, clearly, "I love you." He is sweet and not often stubborn. When he thinks I am asleep he scoots all over his bed and rearranges his stuffed animals. He enjoys feeding the dog her cookies, is quite particular about which TV shows he wants to watch and, in general, participates fully in our life together.

At the moment I am trying to get a wheelchair van so that we can go out again. My one arm and hand got FUBAR somehow last November so that it is weak. I may be able to fix it with surgery, but who knows? With that arm weak I can transfer my man into his chair and into the car but not out of the car. This means I have to pay someone to take him anywhere and the county doesn't have transpo unless he is medicare which he isn't. I have bid on three on eBay and been outbid in the last six minutes on two and been below the reserve on the other. When it is right, the right vehicle, I will get it. It is my faith and my husband's faith which sustains us both.

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...how different this case is from my brother, sister & I having to decide what to do after my mother's last stroke. She wasn't able to swallow, (but never had a feeding tube in, as far as I can remember) and she was pretty unresponsive. We tried various ways to ask her what she wanted, but never got a clear answer. (She did have a DNR order prior to the strokes.)

It was one of the hardest fucking decisions we ever made.

From:

morganmalfoy.livejournal.com

My heart really goes out to you on this one. I read a case the other day where two siblings were at complete odds, with the primary care-taker (a daughter) arguing that the mother wouldn't want really invasive procedures with a small chance of success, while the son, who had not been as close to his mother, wanted to try absolutely everything. It's a really hard decision to decide whether you shoudl allow someone to die a natural comfortable death, or put them through traumatic surgery or therapy that could only be slightly life prolonging.

I work at the Florida Catholic Conference and we just issued a revised advance directive, and if nothing else, the Terri Schiavo case has had tons of people calling us to be sent one or who have been printing them off our webiste.

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Thanks.

The three of us (my older sister in Winnipeg, me from Minneapolis, my younger brother from Fargo - who'd been the most "hands on" of the three of us) got together in Fargo, shuttled from the nursing home, to a coffee shop where we hashed everything out, then to the doctor's office, back to the coffee shop for more hashing, off somewhere else, then back again to the coffee shop, and so on for a couple of days. I wasn't surprised that the coffee shop later went out of business...

We were lucky in that we had some feelings about what Mom might want, but still... And we never got into any heavy "let nature take it's course" vs "you wanna kill Mom" arguments (my feelings were that we shouldn't feel under any obligation to make a decision RIGHT THEN).

One thing I gotta point out is that we had a great deal of help from the hospice nurse. Our final decision was against anything heroic, and arranged for hospice care at the nursing home. We got the word about a month afterward that Mom was slipping fast, so we all headed back to Fargo & had a last chance to say goodbye. I thanked her for all the book reading she'd done when we were kids (even though Dr. Seuss -my favorite- made her eyes cross), and then read On Beyond Zebra to her.

She died about a week later. (At the time I was working Customer Service for Wells Fargo Home Mortgage, and the call that Mom had died actually came in on the CSR line - to another rep, who I really felt so sorry for...)

Since the three of us were pretty short on cash we decided to wait until the first anniversary of her death before putting a headstone up (and we all brought stones to leave on it - we may have all been raised Baptist, but I think there was a rabbi or two somewhere in the family tree).

Two things I remember from that time was my youngest nephew Cole, sorta slumping against me & saying, "I miss Gramma Bus." (their nickname for her), and my brother tucking a wee bottle of whiskey under the headstone.

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My heart goes out to you on this one. I was lucky in that all six of our blended family children left the decision up to me. They all said goodbye to their Dad in case he didn't make it. I talked with the doc and knew exsctly what I was getting into by having the tube placed. I was there through two bouts with pneumonia and the ventilator et al. Actually, once the g tube was in and the NG tube removed, my sweetie began to rally. I went by his eyes and he was clearly, to me, aware of everything.

I had a similar decision to make with my mother. She left it entirely up to me. I am an only child. She was hospitalized with a bad kidney infection and C.I.D. and the docs said shke might not pull through the C.I.D. and if so would have a catheter for the rest of her life. That was two years ago. She is home now, and we got rid of the catheter when it fell out twice in the second week she was home. She is urinary and bowel continent most of the time. She wears Depends underwear, lives by herself a block away and is looking forward to her 90th birthday this July. Had I signed a DNR (I have durable medical and financial power of attorney) like on doc wanted, she would not be here as she choked on one of the blood clots as she was recovering from the C.I.D. and had to be coded. She is legally blind from diabetes and macular degeneration and has some dementia, but it doesn't seem to be the Alzheimers type as she doesn't have the physical symptoms. I go up and feed her kitties and set out her meds and give her any shots she needs. I also take her to get her hair done, have arranged for meals on wheels and housekeeping for her, and do all of her shopping. She takes her own blood pressure and does her own finger sticks at least three times a day. She is a delight and all who see her don't usually realize she has any dementia. It seems to only affect her sense of time and remembering numbers.

Each person and each family situation is different. Mama wants to live to be 100. We have, however, discussed her condition and agreed that should she have another kidney infection or a heart attack or stroke, SHE doesn't want any heroics and has said I can sign the DNR with a clear conscience that I will be doing what she would now want.

There are few people who could and would bounce back as Mother has. It was only because she had been so robustly healthy before her kidney infection that I was willing to let her fight to stay with us. Had I seen even the slightest sense of her giving up or being ready to quit, the DNR would have been signed immediately.

I think we, as children and caregivers, are given the knowledge of when it is time to pack it in for our charges. I say God is merciful to all in that. Rest easy. I believe you made the right decision for your family. I have also seen that nomatter what we as humans try to do, in the end it is really God who decides = or nature if you are not a theist - when a person will die.

From:

porphyrin.livejournal.com

I find it interesting, in an appalling sort of way, that the Senate majority leader is an MD.

Peg, where did you find the living will paperwork? Is this a perk of working for attorneys? Or is there boilerplate on the internet somewhere?

My husband and I need to get that, as well as our *regular* will, taken care of.

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It's on the Internet: http://www.finance.cch.com/tools/downloads/minnlivingwill.rtf

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...I'm under the impression that assigning someone medical power of attorney is more effective than setting up a living will (this is the feeling I've gotten from reading about cases where two people are in a gay relationship, one gets into a medical situation where s/he can't make her or his own decisions & the parents were able to over turn the living will.). Does Rob have any comments regarding this?

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Rob says: You can do both. The living will is a guide to the person who has to make the ultimate decision. The power of attorney gives him/her the power to do so. Rob is curious as to what grounds they have for overturning a living will.

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...but according to something I've heard, Terri & her husband's marriage was annulled. Anyone know if this is true?

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Not according to anything I've read. I have an impression that the parents have been begging him to divorce her so that they can care for her--ironic, since they're Roman Catholic.

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