reality of terri schiavo case

Monday, March 21, 2005

The reality of the Terri Schiavo case

I’ve said it before, so let me say one more time that I am not someone who has followed the Terri Schiavo case. I do not know every detail, have not followed every court case, and don’t really have a strong opinion on the whole case. I do know enough to say that I don’t know who’s right and who is wrong. In my only other post on this subject I talked about how this case is proof that everyone, I mean everyone, needs to have a living will. Quite obviously, telling your husband that you wouldn’t want a feeding tube while watching television one night isn’t good enough. If you say something like that, do your loved ones a favor and put it in writing. Every state in the union has a form that you can fill out to take care of this stuff, and every hospice, hospital, and health department has copies of it that they will give you for free. I’m a huge fan of five wishes (a very in-depth and useful type of living will), and think that anyone who lives in a state where it is legal should use that form. (It does cost a buck or two, but it is worth it!)

Oops, got off the subject. My family found out this weekend that you don’t want to get me started on the need for everyone to have a living will. It’s one of my more passionate opinions, because I’ve seen what happens when you don’t have one.

That brings me to the subject that I wanted to cover in this post which is congress sticking its nose in this case. No, I’m not a legal scholar, so I’m not going to touch that debate with a ten foot pole. What I’d like to say is a response to a quote from House Majority Leader, Tom Delay that was found in
this article in the Washington Times. I’m sure it was said by many members of congress over the weekend, but Mr. Delay is the one who was quoted.

. . . it’s a highly unusual case. . .

I know that out of all the words that have been spilled on this subject, these are odd ones to pick, but to me they are the essence of what is wrong about what congress did this weekend. That statement is totally false. This is a crappy case. This is a sorry situation for anyone to find themselves in. This case makes us all want to puke. Any of those statements would have been just fine, and I think they are all true. This is not a highly unusual case. Sure, I’ve never seen these exact details before, but I’ve seen a bunch like it.

I had the 40 year old police officer with End Stage ALS whose wife moved in with her boyfriend while the patient’s sister and teenage sons took care of him at the house. The wife would get mad about something every once in a while and threaten to take him off hospice . . . and we all knew she could. There was the son I spoke of in
this post, who admitted to my face that his father had told him time and again that he wanted to die at home. The son refused to allow the sister who had taken care of her father for years to grant their father’s wish, because he and his girlfriend had moved into the father’s house (rent free) while dad was in the nursing home. I could go on, but those are the best ones that have happened this year.

Yes, those two examples have happened in the past year (or so) and are from one hospice office. I would be willing to bet all the money I’ve got (it would be a small wager) that there is another situation very much like Terri Schiavo going on in the United States today. The only difference would be that either the family isn’t fighting as much or the press isn’t paying as much attention. This is not a rare case, and the government needs to get a grip on that fact before they set themselves up to have to fly back to Washington every time a family gets into a fight.

Yes, this whole case makes me sick, but it is not rare. I guess that is why I have not spent the energy to follow it like the rest of the nation has. I’ve got my own life-or-death family drama most days at work. Ask any hospice worker you know and they will probably tell you the same thing.

(Did I mention that everyone needs to have a signed living will? The means you, so get off the internet, find the form, fill it out, make copies for your doctor, hospital, and family members, explain to them all exactly what you want, and tell them that they should do the same for their family. Now, go. Seriously, is what you are doing now more important than signing your living will? GO!

15
comments:

Mostly Muppet
said…

Thanks for the great post. I apologize if I offended you earlier by insinuating on my own blog that you were unwilling to commit to an opinion on the subject. As with everything hospice-related, things are always more complex than they first appear. My mother-in-law has shared many stories like the one you wrote here where the complications of different family dynamics intersect when some family member is nearing the end of their life.

Thanks for your honesty and the very interesting post. Your story is important for people to hear. Death is not a unique thing for any of us, it’s an eventuality, a guarantee. The work you do in seeing folks through those last stages of their lives is every bit as important as the delivery nurses and OB/GYNs who help see us into the world. I only wish more people could see that fact or respect it.

And I’ll be taking your advice and getting a living will ASAP.

RisibleGirl
said…

Hey, thanks for the info on the five wishes program. I’ve taken the “five wishes at work” info and emailed it to my employer (we have hundereds of thousands at my place of employment) and asked them to please implement and offered my services to lead the brown bag meetings.

Great info!

PS- I do have a living will, but I’ve made my brother the person in charge, rather than my hubby because my hubby said he could never follow through with what I wanted. He’s too much of a softie. My bro would pull the plug in two seconds! ha ha


Anonymous
said…

Here’s a link of advanced directives by state that’s worth checking out.
http://www.uslivingwillregistry.com/forms.shtm

Galen

poopie
said…

Very well said….the only thing unusual about this case is that it was used as a whipping post for the politicians.

DrTony
said…

Obviously I don’t know the details of the cases you described, but I think you may have missed an aspect of this case that makes it unusual, IMHO.

Like you, I have seen multiple cases where family members disagree regarding the care provided. Unfortunately, in many cases there is no Living Will, and, even worse (at least from my standpoint as an ER doc), no durable power of attorney for health care to name the one person to whom I can turn for decisions.

Sometimes, when there is a DPOAHC, the situation has changed since it was completed and the primary caretaker is overuled by a sibling who hasn’t seen the patient in 5 years.

In this situation, the parents are arguing that the judge who ruled that TS was in persistent vegetative state was biased and had an opinion prior to presentation of the evidence. They are arguing that the judge deliberately limited the witness list to support his preconceived opinion. They are asking for a new hearing where they can present evidence.

You didn’t mention whether the cases you described had been to court. If they are anything like the ones I have to deal with every week, they haven’t. This makes the TS case relatively unusual.


MyssiAnn
said…

Hospice Guy, I am not a fan of the federal government or any government sticking its collective nose into a private family decision about life or death. I am a bit concerned, however, that when a family member petitioned the courts in Florida to change Terri Schiavo’s guardianship because of neglect by her husband, the case appears not to have been fairly heard, but rather taken as a chance to expand the “right to die”. (Here I thought it was an inevitabiltiy, not a right.) I wouldn’t be allowed to treat my cat the way Terri Schiavo is being treated and if she were a child were denying her medical treatment for religious reasons, social services of some sort would have stepped in long ago.
I really pray that she is in PVS because if she’s not, she’s on her fourth day without food or water and feeling terrible pain. I don’t care who tells you otherwise, starvation hurts. (I recall waking after 3 days of unconsciousness following an accident and begging for water that I couldn’t have until the medicos finished their required exams and then wishing I could have more than ice chips to eat.)


MyssiAnn
said…

I forgot to say, you are SOOOOOO right about living wills. Get one, EVERYBODY!!!

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