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Mama Deb
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December 2010
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Mama Deb [userpic]
Thoughts shallow and deep

There is a young Marine lieutenant in the office. He is tall and redheaded and in a dark blue uniform, and I keep sneaking looks at him. Especially when he left to make a cellphone call...

1. The Federal government has absolutely no place in this, and no one should make political hay out of a family's tragedy.

2. To my husband and others: If I am *ever* (God forbid!) in such a position, do not do anything to hasten my death. Do not starve me to death or deny me essential care. Maybe do not do anything prolong life other than essential care and whatever is needed for comfort, and please consult our rabbi at every turn, but do not hasten it.


Talk to your doctor and get a legal 'advance directive' made up specifying exactly what kinds of interventions you would prefer to have, or not, and under what sorts of situations. It's really difficult for a lay person to make these kinds of decisions at the time, especially if they feel pressured on all sides (one relative saying, "don't prolong it", another relative saying, "if there's a 0.0000001 chance, I don't care, radiation, no matter what, do whatever it takes" and on top of that perceived pressure to consider organ donation before the patient's condition deteriorates--though they will not, ever, do anything to hasten your death to get the organs, which many people misunderstand--actually, the reason they want to know early is that they will treat causes of potential organ failure more aggressively, which is better care, not worse).

This is why I specified a rabbi. Because this whole thing is fraught with halachic ramifications (and organ donation is even more fraught) and those are the most important considerations so far as I'm concerned.

This is a total side note, but I'd been told at some point that organ donation was forbidden for observant Jews. Is that correct, or was it another case of close-but-no-cigar misinformation?

Or, perhaps, one of those things where the answer varies depending on whether one is Reform, Conservative or Orthodox?

It's amazingly complicated, is what it is, because bodies are supposed to be intact when you bury them (which means that if someone dies by violence, they are buried in the clothes in which they were killed instead of being washed and dressed in burial clothes so as to get all the blood). On the other hand, an organ transplant will save or prolong a life and that's a good thing, and may well outweigh other considerations.

It's already a battle to not allow autopsies.

Fascinating. I did not know that. I knew the Orthodox did not allow embalming.

I'm Methodist, and there was never a question. As soon as I got a driver's license, I signed the organ donation form, and my folks witnessed it. I've always believed "Take whatever you want, I'm not in it anymore."

If I'm persistantly vegitative, I don't want to be fed through a tube until my family has used all the insurance, all the savings, lost the house and is utterly bankrupt from the cost of it. (Mom was a nursing home nurse and saw such cases frequently)

If, otoh, I have a real chance of a fully functional recovery, please, take whatever measures you can. We'll work out the payments when I'm back at work.

To the best of my limited knowledge it's a controversy :)

You're absolutely right, a rabbi *should* be involved. I hadn't been thinking first and foremost of halachic considerations (though I should have been) because I'm at work, heh--but you're quite right, there are rather a lot of them. Somewhere I have a paper someone sent me on that topic.

I was thinking more along the lines of the doctor in terms of explaining to you what some of the interventions are and how they are used.

I am always hearing people say, oh, they never want to be on X machine, but X machine is a perfectly acceptable treatment for a number of conditions that are *not* permanent, and they don't know that. Or that there are lots of people who are living pretty good lives with the use of X machine. People have visceral reactions to this stuff, which is why I don't think it's appropriate to take a remark someone makes in response to seeing something on TV or in the papers as an indication of what an unconscious patient 'really wants' (and that is what Schiavo's husband is saying).

A lot of people think that Schiavo is on 'heroic measures' but a feeding tube is not a heroic measure. I had a feeding tube once for all of two days.

I wonder if your rabbi could serve as one of the people to help you draw up the documents and to witness them. In California we don't let the patient's physician do this, because of potential conflicts of interest, nor anyone who is a potential inheritor of the patient's estate. Your rabbi is neither.

It's the feeding tube thing that's bothering me right now. Because starving someone to death doesn't strike me as a good thing. Ever.

And I really hate that death seems to be default for so many people.

But many, many people have spent a few days on a ventilator and then been weaned off - or not, but still managed decent lives.

Christopher Reeve, for example.

I can't imagine that G-d would ever want us to let someone starve to death, and I am totally frustrated that people I normally consider reasonable don't understand where I come from on that. Why death is the default for so many people I'll never get, and the other thing I don't get is why it seems to be the universal default among atheists! (If I didn't believe I would have a life after death I would want to hold on to life even harder.)

And the thing a lot of people are unwilling to acknowledge is we don't really understand 'persistive vegetative states'. Sometimes people get better after everyone's given up on them. And only G-d knows who will be a Christopher Reeve or a Stephen Hawking--imagine if Stephen Hawking had decided he'd be better off dead!

an only vaguely related tangent.

Not that I'm disagreeing with you in principle, but neither Christopher Reever nor Stephen Hawking are/were in persistive vegetative states.

They are, however, both miracles.

I used to work for a pharmaceutical company that was trying to get a drug for ALS (what Stephen Hawking has) through the FDA. The FDA didn't let it go through on the basis that there wasn't a signfificant enough improvement in lifespan or quality of life from the medication. If I were diagnosed with ALS tomorrow (chas v'shalom), I'd pray to be hit by a truck. Stephen Hawking, admittedly, is a miracle. But he is an exception to the rule that generally means that you've got about 2 years from the date of diagnosis left. And that's not two years of getting your affairs in order... much of that two years is spent unable to move, unable to brush your teeth, unable to communicate. But your mind stays sharp and watches as the rest of you deteriorates.

Like I said, I'm not disagreeing with you in principle. But really, a diagnosis of ALS would be worse than death to me.

If I didn't believe I would have a life after death I would want to hold on to life even harder

Curiously, and speaking from an atheist point of view, I've always found comfort in the thought that life is not eternal. Because though I'm a pretty happy person overall (I've had periods of depression, but never for long) the idea eternal life is something absolutely terrifies me. I really, absolutely, don't want it.

Worse still, perhaps, would be a life where I was still mentally alert but stuck in a body which needed constant care, either from family or strangers. I'd rather be unknowing, or dead, than that. So, from that point of view, I hope Terri Schiavo isn't 'in there' in any sense that we would understand it.

I can see what you mean about starving someone to death, but, well, as someone down the thread says, it's a short time of discomfort rather than years of misery.

I agree with you. I don't think that removing a feeding tube is the equivalent to turning off a machine. (Though your point about machines is also well-taken).

I'm a little disturbed that issue doesn't seem to be coming up in this debate.

I also wouldn't want a feeding tube removed, and would only want a machine turned off in certain extreme circumstances.

I'm an atheist, and it's not the default for me.

Actually starvation and dehydration produce euphoria which is quickly followed by coma. I've seen it. It's far more merciful than what she has coming even with the best of care. Over the course of my career I've taken care of a lot people in Terry Schiavo's condition. I've come to the conclusion that if I ever end up in that position, not only do I NOT want a feeding tube, I want someone to put a bullet in my head.

starving someone to death doesn't strike me as a good thing. Ever.

It seems to me that it's the best of several awful choices.

Shall we stipulate that, based on the evidence, there's no there there, as far as Terry Schiavo is concerned? (Here I refer to the CAT scans indicating that her cerebral cortex has degenerated and been replaced by spinal fluid. If there's no cortex, there's no thought, no person.)

Assuming so, then the choices boil down to maintaining an insensate, unaware hulk; permitting that body to expire; or assisting its expiration.

I know what I'd do, but apparently society won't let Old Yeller be human. Even when she no longer is.