March 16, 2005

Living Will, Will to Live, Take Your Pick

If I'm breathing on my own, don't kill me. Seriously. Don't take away my food and water, even if I'm kinda drooly and can't talk. DO NOT KILL ME. And also? CAT scans would be nice. MRIs would be nice. Use me to test theories about how the brain damaged communicate. You never know.

The older I get, the less inclined I am to be all, "If my life isn't exactly perfect in every respect the way it is now, unplug me," and the more likely I am to say, "Plug me in! Hook me up! Pray for a miracle! I've got a kid I'd like to see again sometime!" After all, I have eternity to be dead in. My time here is much more finite.

And as a side note to Hublet--it's called DIVORCE. If dealing with the (presumably) veg-tastic wife gets to be too much for you, then see a lawyer and divorce my drooly self, preferably before you shack up with someone else and start popping out the kids. Don't get a court order to starve me to death and try to say it's "what I would have wanted" because I told you so in some conveniently unverifiable conversation we allegedly had 15 years ago. Umm, no. If I'm totally brain dead and on a respirator, that's one thing. If I'm awake and breathing and looking around, it's not like I'm going to go gently into that good night with the flick of a switch. I'm going to SLOWLY FREAKING DEHYDRATE AND STARVE TO DEATH. And I'm here to tell you right now that starving to death is most definitely NOT what I would have wanted. Ever. Period. Have a nice day.

And if some boneheaded judge tries to rule to the contrary? Wheel me into his courtroom and let me drool on his gavel. Then knock some sense into him with it.

Update: I'm enjoying the Million Dollar Baby debate, so to those of you who fear you're hijacking the comments--don't. Fear, that is. Not don't hijack the...oh, you know what I mean.

Posted by Big Arm Woman at March 16, 2005 10:16 AM
Comments

A living will is not the same thing as "[i]f my life isn't exactly perfect in every respect the way it is now, unplug me." It's good that you've recorded your wishes here so that if, god forbid, you end up in a long-term coma, Hublet knows what to do.

But people ought to have a choice. In January I watched my father in law die without a respirator as his lungs finally gave out. He was 56, and at the end of a long battle with a degenerative lung disease. I don't think anyone questioned his unwillingness to live via artificial respiration -- he had a living will that met North Carolina's standards.

If you're not arguing that people shouldn't have a choice, what should your readers make of your disregard for a spouse's testimony? Aren't most of your conversations with your husband unverifiable? To rephrase the question, when you've reached the point where the only way forward is an unconscious life supported by machines, shouldn't the evidence that matters be a written statement of intent, a spouse's evidence, and then your family's will in that order?

I'm almost certainly taking this entry too seriously, but if you're speaking for anyone other than yourself, you're taking a position that seems to me to have problems.

On a lighter note, I can't wait for the first case where a family seeks to introduce a blog post as evidence of a person's plans in case of permanent and total disability.

Posted by: Lance McCord at March 16, 2005 11:35 AM

Lance -

I attended living will training as part of Stephen Ministry training. If you ever want to have the shit scared out of you concerning what "loving family members" might say or do about your "last wishes," even when no money is involved--go to a living will info. session.

If you have last wishes--write them down. If it's that important to you, and it should be--WRITE IT DOWN. Because my suspicion of my fellow man is such that I will remain totally sceptical about ANY family member's motives when the loved one cannot speak for him or herself.

My argument--and I think it's fairly clear--is that if I haven't written it down, myself, no one else, and that includes my husband, the medical community, and the courts, gets to decide for me that I'd rather be dead. If that's not what I would have wanted, then I'll just have to deal with the consequences of my own stupidity in not writing it down.

Anything else goes into very dangerous territory, because it's amazing how your "best interests" can be interpreted by people who Are Not You.

Posted by: BAW at March 16, 2005 11:58 AM

An additional (and obvious) problem involving what others say you would have wanted is that, human nature being what it is, we all tend to change our minds about things, especially when circumstances are altered. Is something I said fifteen years, or one day, ago absolutely binding if I can't verify it for you? What if I've reconsidered, but can't tell you?

Of course this is a tough, tough issue - perhaps an incomprehensible quandary. But it tells us so much about ourselves when we consider the default position that a large chunk of society (including mass media and many judges) takes, subtly or not. "If we must err, err on the side of death," they say, if not in so many words. Shouldn't the default be to err on the side of life?

I thought the final twenty minutes of "Million Dollar Baby" marred a beautiful film, by the fact that, other than a pitiful attempt by a feckless priest, no one even attempted to make a real argument for life. Even if it would have changed none of the characters' minds, shouldn't we at least have heard the argument (not to mention arguments about criminality, etc.)? Instead, we are treated to a polemic in nihilism. Thanks again, Hollywood.

Posted by: Husband of BAW at March 16, 2005 12:26 PM

BAW I agree with you totally. And I have expressed this to my family repeatedly, but I guess I need to write it down.

Don't starve me. Don't deprive me of water. If you decide my life has to end, hell, put a pillow over my face. Like you, I don't get the urgency. Terri will die soon enough, as will we all.

Posted by: Laura at March 16, 2005 02:04 PM

Also:

"To rephrase the question, when you've reached the point where the only way forward is an unconscious life supported by machines, shouldn't the evidence that matters be a written statement of intent, a spouse's evidence, and then your family's will in that order?"

I think that if concensus can't be reached by the spouse and the immediate family, i.e. parents and sibs, then we should err on the side of life. Most of the time everyone agrees.

Posted by: Laura at March 16, 2005 02:06 PM

I remember the time Tinkerbell was feeling low and the audience brought her back to health. That wouldn't happen today.

Posted by: Ron Hardin at March 16, 2005 02:17 PM

Fair enough. I don't think we disagree on much besides whether our spouses should be able to pull the plug. I do wonder whether a person can be so far gone (but still on life support) that her family's wishes are more important than her own. Not trying to be argumentative -- I'm really curious about that.

I just re-read that paragraph and want to clarify. The question "when should we be able to kill our family members for our own convenience" isn't very interesting. My question is "under what conditions should a patient's family be free to select among possible life-support arrangements (assuming the patient hasn't already made the choice)?"

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Posted by: Adam at March 16, 2005 03:52 PM

My grandmother was removed from life support based on statements she'd made to my aunt and to her doctor. A majority of the children were present, and they decided to unplug the machines. The ones that weren't there would have wanted her to be on life support. Yeah, they were robbed of their vote, but the majority of the kids said to let her go. I don't know. I think having her on life support would have killed my dad.

Re: MDB - I don't think Eastwood had an obligation to show both sides of the argument. Movies and plays are about watching characters make choices, and hopefully thinking about those choices, and then doing whatever you have to do to make your own decision. "Equal time" is not guaranteed or needed in every story.

Posted by: Nikki at March 16, 2005 04:12 PM

Lance -

I don't know--I know that treatment decisions are made by family members when patients can't give informed consent, and I know my mom and her siblings signed a DNR on my 86 year old grandmother after a series of strokes put her in the hospital for what we knew would be the last time, but I don't know what the guidelines are.

I'm sure they vary from state to state, too.

Posted by: BAW at March 16, 2005 04:13 PM

Nikki -

True, neither the script writer nor Eastwood had an obligation to give equal time on an issue. But even from an artistic standpoint, it cheapened the relationship that was so carefully built up throughout the movie. We spend the entire movie watching this priceless relationship carefully being constructed, and then: "Oh, you don't feel that you are a worthwhile person anymore, so rather than try to convince you otherwise, or wait for you to get a little more perspective, I'll surrender to your argument (with some slight reservations) and do away with you."

Posted by: Husband of BAW at March 16, 2005 04:24 PM

This is a tough issue.

Have had long conversations with the hubbie about "what to do if" since we've both been the one who sat next to the hospital bed.

Our answers have changed since we had kids. I am sure our answers will change once our boys are out in the world fending for themselves.

What is the right decision for us may not be for others.

Which is why they created lawyers. For a few bucks, you can change your wishes as often as you want - an especially useful idea if you don't fully trust your partner to do right by you.

But with the Terri/Mike case in FL, something about the whole situation seems fishy. At first she's receiving PT and all sorts of other therapies, and now it's at a "starvation is the answer" point.

I can understand the husband wanting to move on, but unless she is an heiress to untold fortunes who left it all to him in a will, where the heck is the advantage to getting rid of her through death instead of divorce?

Posted by: di at March 16, 2005 06:13 PM

THat's fine that you feel that way. What if Terry Schiavo really did have that conversation with her husband, just like he said. What if this really is about "her wishes" not your wishes.

You weren't there. I wasn't there.

Do you want your parents making decisions for you ahead of the the hublet? That is YOUR choice.

It may not be everyone's choice.

Posted by: Zendo Deb at March 16, 2005 09:43 PM

Nikki,

Movies and plays can simply be about watching characters make choices, but good art is something more, and MDB was bad art because it took sides, and did so in a way that did not represent reality faithfully or honestly. In other words, good art doesn't stack the deck so that you only see the aces those on one side of the table hold. Ask quadraplegics who worked through their (predictable) suicidal thoughts if the film fairly represents the complexity of the issue. Another function of good art is that it enlivens us by helping us to see and understand such complexities in ways we haven't before. The message of MDB diminishes us by limiting our view of what gives our lives value.

But let's look at this another way. Let's say the character discovered that, instead of being paralyzed, she was black or a lesbian and because she didn't have the imagination to value her life under those conditions, made what was portrayed in the film as simply "her choice" to end her life, which was supposed to be respected of course, and anyone who facilitated that choice was, as the wise voice-over instructs us, a hero. Can you imagine the picketing outside the theaters?

Whoops, sorry about hijacking your comments, BAW.

Posted by: Brad K. at March 16, 2005 10:56 PM

Interesting, because I didn't feel the film took sides. Of course, I generally don't feel that way about film, but that's me. If someone chooses to take his or her own life, that is ultimately that person's choice. This is always a tough, tough subject. As a society we don't like suicide but it is ultimately one of our most personal choices. I didn't think that Frankie was portrayed as a hero. I thought he was rather tragic. I thought it was a good film. It made me think a lot about this issue. The film wasn't about all quadrapalegics; it was about one person's choices. Documentaries are supposed to be totally impartial and show all sides. Movies aren't. I doubt that a Christopher Reeve film would give euthanasia equal time. And, ultimately, for me anyway, the film wasn't about her death but about her life and her struggle.

And I would also apologize for the hijack, but we're at least having a civil discussion on a related tangent, so that's better than a flame war. (And, this is a choppy comment, but I have a horrific case of sinusitus, so I forgive myself.)

Posted by: Nikki at March 17, 2005 09:47 AM

Gee Zendo,

And here I thought I was talking about what I would want. The Schiavo case is just another in a string of examples of why, if you have particular desires about the way you want to be treated, you should write it down. Me? With a 3-year old, I'm firmly in the PLUG ME IN camp right now. When that changes, I'll change the living will, primarily to spare hublet and my parents from having to make those decisions.

The secondary reason for writing it down is because people suck, motives are always questionable, and the only person who will ever be able to accurately decide "what you would have wanted" is you.

As for the Schiavo case in particular, there's enough info out there to make me think that the husband's motives aren't entirely altruistic--the presence of a possible cash windfall being among them. And I don't think it sets a good precedent legally or medically to be able to kill a brain damaged person simply on the word of one other person. You said it yourself--no one else was there, so we can't know. I'd prefer to err on the side of life.

Posted by: BAW at March 17, 2005 10:01 AM

Wow, great posts. It is nice to read opposing viewpoints phrased well enough to make me think rather than roll my eyes.

My own personal viewpoint is that I'd rather not be a burden. I've told my wife, "please, if I'm brain-dead, put me out of your misery." I don't want my son to remember me as "that lump in a bed." I want my family to get on with their lives.

This seems to me an issue of when the survivors get to move on with their lives. When someone dies, there is closure. You grieve and hopefully let go. When the body is on a respirator and brain-dead, moving on is much harder.

Thank you, to those who suggested divorce. If one really believes the person is irretrievable enough to kill, and legal concensus cannot be achieved, then divorce should be a viable option. I'd never fully considered that before. Please realize, though, that this is easier said than done. Walking away from a breathing corpse can feel like abandoning a suffering loved one, even though reason says the person feels nothing. In the Florida case, the husband may full well believe that he is failing a moral obligation to the person he has loved more than anyone and that anything else will be wanton abandonment.


Hopping over to the MDB thread...
I adamantly oppose the idea that artistic value is linked to its balance of viewpoints. The beauty of art is that it gets provokes response. It gets discussed. In that respect, this thread itself makes a case for the movie having merit.

Posted by: JJ at March 17, 2005 12:09 PM

Oh, one more thing...

When I was in my early twenties, my great-grandfather kept bouncing back into the hospital. Somehow he'd avoided hospitals for 90 years. I hope I'm that lucky.

One time, his sister decided that he wasn't going to make it. Boy was there egg on her face when she had to scramble to buy back furniture and move it back into his apartment when he came home. This is the "funniest" thing she did. Most everything else defies even the craftiest of humors.

Nearly a year later, on the last trip, he remained conscious, aware, and in perfect communication during all but the last hour of life. This didn't stop his sister from loudly telling the docter "don't you mind what he says, you don't keep him hooked up to no machines, now y'hear me." Then she proceeded to prod the doctor for free medical advice for herself.

So yes, I can vouch for family members being dispicable and untrustworthy.

Posted by: JJ at March 17, 2005 12:22 PM

J.J.,

You're right, this has been a great, thought-provoking thread.

To your first point, I would ask this: if one of our loved ones, to whom we are responsible, reaches a state like Mrs. Schiavo, are they not still part of our lives? Yes, this state alters things irretrievably, and our relationships with such loved ones are suddenly quite different, but I don't think I would be true to my wife, or child, or anyone I love if I saw them as something to "move on" from, as long as they were still physically part of my life. My part, I think, would be to still care for them in whatever way that I could, even if they weren't able respond to me. And I'm not saying any of that would be easy, not even in the least.

As for your MDB point - look, I thought the movie was great art until it took that turn, and suddenly became something else - in my opinion, it forced us to think about the euthanasia issue, instead of the film (it was a disruption of the art, in other words). I think the only way it could have worked, artistically, was to show us all the conflicts Frankie was having. Up to this point we were shown how much he had grown, how much he loved Maggie, how much he wanted to care for her. But he never tells her this at the end, and I think he HAD to if we are to take the last part of the film seriously, no matter what he eventually decided to do. "Maggie, I love you. I need you in my life - please let me take care of you. You mean too much to me, and you are not worthless because you can no longer care for yourself" (o.k., I'm not a script writer). This doesn't happen, and it actually angered me, because it negated all I had invested emotionally in the film, and forced an issue on me.

I also don't think the threshold for great art should only be that it prompts conversation - there was plenty of hype for the film, pre and post Oscar, and so it is bound to be talked about.

Posted by: Husband of BAW at March 17, 2005 01:08 PM

I need to clarify at least one point. I don't believe that art should take no sides at all (though I do think great art is apolitical), or that art is some sort of scale that must be perfectly balanced. It must, however, do whatever it does honestly. And the less honest it is, the more it veers toward propaganda.

At a certain point in MDB, the film stops serving the characters in the story and starts justifying the ending such that it becomes a kind of cinematic geometric proof. The characters say and do what they have to say and do to get to QED as quickly as possible. The situation itself is a contrivance since any cogent person can refuse medical care. The bedsore/leg amputation stuff is simply dramatic spice--not what would ordinarily happen with adequate medical care. The redneck family are caricatures, not characters, there merely to answer those who might ask: what about her family? As has been said, the priest is feckless--a straw man to be knocked over. You end up with a good boxing movie in over it's head, flirting with the very important question of what makes a life worth living, and allowing a depressed young boxer's vacuous post-game locker room answer to stand as somehow valiant.

Now suicide is a tough issue, but we normally treat suicidal ideations as a symptom of depression, and that's what it usually is, especially for newly paralyzed patients. The other obvious thing about suicide is that the outcome is permanent. It's a decision commonly made in ignorance of what the future could hold. I'm offended, rationally and spiritually, by an half-assed defense of the decision.

As for Clint and his defenders who say it's just the story of these particular people, I find it interesting how creative people gracefully accept praise that describes their work in terms of how it reflects or comments on large, important issues in society, yet when it's criticism in the same vein, they play the modesty card--it's just a yarn, dude. Chill out.

Okay, hijacking complete.

Posted by: Brad K. at March 17, 2005 03:49 PM

I'd like to point out - Terri isn't on a respirator. She has, or had, a feeding tube, that's all. My MIL, who is in her 80's, had to have a feeding tube for just a couple of weeks when she unexpectedly became very ill. She'll have to have therapy to learn to swallow again because at that age muscles atrophy really fast. Terri's been on a tube with no therapy for many years because her husband blocked it. It's possible she could learn to swallow food, especially since she apparently swallows her saliva.

As long as we're talking about what-ifs - what if your daughter were in Terri's condition, you were convinced that her quality of life could be vastly improved if you could care for her and see that she got the therapy she's not now getting, and her husband was not only blocking everything, and not letting your see her, but also trying as hard as he could to end her life - with the court's help. So he could take her money for his second family. It's hard to imagine a worse nightmare.

Posted by: Laura at March 19, 2005 05:02 PM

To be fair, Michael Schaivo lived w/ his inlaws for some time, and when it became apparent that he and they were not going to agree on Terri's continued treatment, he took it to court so that a judge would basically act as Guardian Ad Litem for Terri and decide based on the evidence what should happen. The evidentiary standard in this case was "Clear and Convincing" -- which is I think the highest that can be required -- and the judge found this multiple times, based on more than just Michael Schaivo's testimony, that Terri would have chosen to have the feeding tube removed. He couldn't undo this if he wanted to, essentially - he didn't make the decision, the courts did. Furthermore, he cerebral cortex is filled with spinal fluid, and will not ever regenerate. I feel badly for Mrs. Schindler, but her daughter is not in there. The reactions they're showing are all brainstem activity, not signs of cognition. The lawsuit he won was for about a million dollars, and was against Terri's former doctors who did not properly treat her bulimia, which is what caused her heart attack (Severe electrolyte imbalance). $750K went to Terri. I imagine most of this has been spent on medical needs, but obviously I wouldn't have access to the actual financial records. Money goes fast with this type of care, though.

Posted by: Nikki at March 21, 2005 02:03 PM

I watched my father-in-law die this past summer over a week, and it wasn't a pleasant thing. But it was his choice, at 86, to refuse all care past a certain point. He had a living will, but here in Texas it doesn't matter; the spouse or next-of-kin is given priority over a living will because of a law signed by then-Governor George Bush.

It was unpleasant to watch him slowly die from lack of food and water, but it was his choice, and had been expressed freely to his wife, to the rest of the family, and to his doctors. So we honored his wishes.

On the other hand, my grandmother spent 29 years in a nursing home, and the last 15 or so in what would now be called PVS because of an inoperable but slow-growing tumor. She also ended up on a feeding tube in those last few years, and I have to say that I find that extended period to be far more horrifying than the last week of my father-in-law's life.

But I think you've got the right of it: it's a personal choice. For example, my husband and I both have agreed to be organ donors if the occasion presents itself. My mom, however, is totally horrified by the thought, so I will honor her wishes even though I don't agree with them.

If you really want to make sure your living will is followed, you could consider writing the conditions into your actual will, where you leave all your money to your spouse, but only if he/she honors the conditions of your living will, and to someone or something else (like maybe a charity) if your living will is ignored. And then give the person copies of the will.

Posted by: Claire at March 22, 2005 02:12 PM

I think its very sad that we have come to a point where if I don't write down that I don't think food and water are extraordinary medical treatments, someone else can decide that they are exactly this. Why do we not presume a person would want to live unless they specifically state it in writing? Why is anyone elses opinion or recollection of a bygone conversation even relevant? There used to be a self-evident presumption that everyone should be allowed to live.

I have an aunt who my mother and her brother take care of that has had multiple strokes etc. A few months ago she was not expected to make it. However, she was not on a respirator but was receiving food and water through a tube. It was suggested that the tube be removed. My mother was so upset with the whole thing that she simply agreed. Long story short, my aunt decided it was not her time and came back to us. She is still frail, but talks and laughs and is very much alive. My mother is horrified that under the pressure of the situation, she had consented to the "starving of her sister"(her words).

So, I now tell everyone its not the "quality of life" but the "equality of life". My life is of equal value when I'm healthy or terribly disabled. Any other discussion is probably more for the benefit someone other than me.

rb

Posted by: Randall at March 23, 2005 09:58 PM

I think it's possible to put a lot of weight on the "food and water" aspect of the Schiavo situation and miss the central issue of the ongoing battle. The Florida courts applying Florida law have said that the decision is Michael's. Now a group of federal judges from across the political spectrum have said that Terri's parents have little to no chance of showing that the Florida courts were wrong.

There are things I'd like to change about North Carolina state law, things that I believe to be morally reprehensible. I hope, though, that if I were given a magic wand I could wave and have the US Congress swoop in and impose my desires, I wouldn't use it. The principle that some things should be left to the political process in the States is a central part of our government. The federal politicians who are begging the courts to subvert that principle may be lighting fires they can't put out.

Roe v. Wade is an example of federal power swooping and enforcing a legal rule that I consider an improvement. I suspect, though, that what the S.Court really accomplished was to take a difficult issue and fan it into a culture war. When I see images of the protesters shouting at each other or hear about clinic bombings, I don't feel so good about federal muscle-flexing. See also Dred Scott.

Posted by: Lance McCord at March 23, 2005 11:10 PM