Living wills

[mum2sarah]

Ok, I really don't want to go into the whole debate about the Terri Schiavo case, because although I am usually an extremely liberal person, my personal opinion on this issue is probably not a popular one on MDC. However, reading all about it in the paper has got me thinking that it would be best for everyone to make their wishes known on a legal document about what should be done if they should end up in a vegetative state or a coma or whatnot. That way courts would not have to guess what a person would have wanted or who should make decisions for the person. Instead it would all be in writing, and hopefully the person's wishes would be granted. I have thought about doing this myself; however, I know nothing about legal documents. The only documents I've found that address this issue are living wills, which seem to only be for people who would wish for life support to be taken away and be let to die. What about people who want to make it known that that is *not* their wish? What kind of document would you use?

I mean, hear me out. I am not pretending to know the details of Terri's case, but let's just suppose her husband did try to strangle and kill her as her parents have alleged. Let's pretend that her husband already had a girlfriend, and did not have Terri's best interests at heart. So without a legal document, he can walk into a courtroom after having unsuccesfully tried to kill his wife and then argue to terminate her life by simply saying that his wife once told him verbally that she would not want to be kept alive on life support. Again, I'm not saying that's the case and I certainly hope it is nothing but fiction from my twisted mind, but it's a scary thought that it *could* happen, and you'd have no legal safeguard if you would not have wanted your life terminated.

If you feel personally convicted that no one knows all there is to know about the quality of life for vegetative patients or their prognosis for the future and feel that you would not want your life terminated, isn't there some kind of will you can draw up to state those wishes? Again, I'm not trying to go into the right to live vs. right to die issue. I think that it's a personal decision that everyone should think about and make based on their convictions. If you would want no life support in Terri's situation that should be your decision, and I think a living will would be an important means of making that decision preemptively. But why is it that I cannot seem to find any sort of legal document for those who feel the opposite way? I mean really, no one *truly* knows what Terri would have wanted without a document of her wishes, whether they would have been to live or to die... Shouldn't there then be a document a person can file for both sides of the issue?

[Marlena]

You can do this with a living will. It's most frequently cited as a means to ensure that life-prolonging measures that result in an affront to human existence are not used (my opinion in there, of course). But if you want all possible measures taken to prolong your life, no matter what the circumstances, then by all means you can use a living will to do so. Well, or I assume so - you're in PA, right? You'd need to check the laws of your state. There's almost certainly a website (or two, or three, or four...) that would have the information for which you're looking - just do a Google search.

I'm in Texas. I certainly had the option of checking on my living will that I want all possible measures taken to prolong my life should I go into a PVS for whatever reason.

[Potty Diva]

We have a living will. We found a site that you can download forms for free. We then filled it out, kind of created our own and signed them in front of a notoray. We have a copy signed in our paperwork and my sister has one(Kailey will go with her if something happens to us).

[mamaroni]

Dh and I just did the following documents:

Patient Designation of Advocate and Durable Power of Attorney for Medical Treatment With Statement of Patient Desires

Acceptance by (spouse) to act as (spouse's) Patient Advocate

(Spouse's) Durable Power of Attorney for Medical Treatment

I know this sounds complicated, but really it's another name for Living Will. (I was an attorney in my former life, and have attorney friends still, so this didn't cost us much). We both named our mothers as back-up in the event we are both gravely injured in the same accident. We also designated who would take care of our kids in the event we are both killed in the same accident. being an attorney, I do NOT want the courts to have to decide these matters. I know lots of people are really turned off by the idea of even thinking about these things, but I really think it's important.

With just a little on-line research, I'm sure you can draft documents on your own. Just make sure they are witnessed/notarized properly.

[Marlena]

Just as a slight clarification, there is a definite distinction between having a living will and giving someone medical power of attorney. The first generally applies only to situations in which you are terminally ill (ie, death is reasonably expected within 6 months), or in a PVS (check the laws of your state). The second applies (or can apply) when you're not competent. Note, though, that not being competent can apply to a far vaster array of situations than merely being terminally ill or in a PVS. As it's far more inclusive, it's generally better (if you have someone whom you trust very well to make such decisions) to execute a medical power of attorney, rather than (or in addition to) a living will, and then DISCUSS your wishes thoroughly with your designee(s).

[mum2sarah]

Thanks for the legal advice, everyone. I had originally thought a living will could serve both purposes, but when I downloaded one for PA from an Allegheny County website, it said something like if you sign a living will you agree that no measures should be taken to prolong your life. So I thought maybe I didn't know after all what a living will was for. I went to dictionary.com and looked up "living will" and it said basically the same thing the PA form did. So maybe it's just a common misperception, and I need to find a better online living will that is more inclusive. I'll have to keep looking, but thanks... At least I know I'm on the right track.

[mamaroni]

Mum2Sarah, I just finished reading a short article in TIME magazine about Living Wills. It's short, but says each state has a different form available at partnershipforcaring.org. You can also get a durable power of attorney for health care form at the same website. You need both.

Also, check out agingwithdignity.org. They have forms available for $5 that are accepted in 35 states, according to the article.

Anyway, thought this might help you get started.

[Greaseball]

Well here's my living will. This is its only form, so MDC better not get shut down!

"If I am ever in a coma, I am to be kept alive for one year before termination. At that point, I would like the method of termination to be intravenous infusion of opiates, not starvation. You may remove my feeding tube when I am pronounced dead by a competent medical examiner."

There it is! Very simple. No loopholes.

Oh yeah, and also, "During my coma, I am to be bathed and have my teeth cleaned daily, my sheets are to be changed regularly, and my limbs are to be manually exercised."

[Marlena]

If you're going for completeness (since that appears to be what you're doing), you also want to be turned every three hours or so, or else you'll end up with bedsores the size of dishpans.

I can't imagine that you were serious that the post was your only form for your living will, but just to make the plug again:

YOUR LIVING WILL NEEDS TO BE IN PROPER LEGAL FORM IN ORDER TO HAVE ANY LEGAL EFFECT.

[mum2sarah]

mamaroni,
Thanx for the link to partnershipforcaring. On their FAQ page it said that a living will is an advance directive that states how you wish to be cared for if you are not capable of making decisions, so it sounded pretty general and inclusive. But then when I downloaded the form for Pennsylvania, it says this as the first statement:

"I, ___________, being of sound mind, willfully and voluntarily make this declaration to be followed if I become incompetent. This declaration reflects my firm and settled commitment to refuse life-sustaining treatment under the circumstances indicated below.

I direct my attending physician to withhold or withdraw life-sustaining treatment that serves only to prolong the process of my dying, if I should be in a terminal condition or state of permanent unconsciousness.

I direct that treatment be limited to measures to keep me comfortable and to relieve pain, including pain that might occur by withholding or withdrawing life-sustaining treatment."

So do you see what I mean? This allows no flexibility in the document to say you do *not* want life-sustaining treatment withheld or withdrawn. Why can't it just be general enough to include both situations? I don't know, maybe I just need to talk to a lawyer...

[Marlena]

I'd guess that one could probably just cross out "refuse" in the first paragraph and handwrite in "receive", and initial the change, and make similar (initialed) changes in the second paragraph re "withhold or withdraw." Thereafter, the document appears more flexible.

If you have any doubts, though, you should probably consult with a PA lawyer to make sure that you actually can do that, and still have the document have legal effect.

Also, if you designate anyone as a medical surrogate, then you should probably thoroughly discuss your wishes with him/her. I've seen at least one study that looked at how well the desires of individuals re medical treatment and their designated surrogate decisionmakers matched, and the results were shockingly bad for all groups except those who explicitly and thoroughly discussed their wishes with the surrogate decisionmaker.

[mamaroni]

Originally posted by Marlena
Also, if you designate anyone as a medical surrogate, then you should probably thoroughly discuss your wishes with him/her. I've seen at least one study that looked at how well the desires of individuals re medical treatment and their designated surrogate decisionmakers matched, and the results were shockingly bad for all groups except those who explicitly and thoroughly discussed their wishes with the surrogate decisionmaker.

I agree with this too. Also, my best guess is that the reason the Penn form is written that way (and probably for most other states) is that w/o a living will, you will automatically be kept on life support. The point of the living will is to give instructions if you DO NOT want to be kept on life support. You can probably get a lawyer to give you a free over-the-phone consultation. Check with Legal Services in your area first.

Greaseball, I also agree with Marlena with regard to your "living will." It may hold some validity if you write it all out in your own handwriting, and date it, have it witnessed, etc. (whatever the rules are for your state). You also should follow the instructions from Marlena's pp (quoted above) about making your wishes CLEAR to your family, and whoever will listen! (only half-kidding with that comment). Otherwise, like I said above, I think the default situation is that you'd be kept on life support indefinitely.

[mum2sarah]

Originally posted by mamaroni
I agree with this too. Also, my best guess is that the reason the Penn form is written that way (and probably for most other states) is that w/o a living will, you will automatically be kept on life support. The point of the living will is to give instructions if you DO NOT want to be kept on life support. You can probably get a lawyer to give you a free over-the-phone consultation. Check with Legal Services in your area first.

I guess laws about this could be different in every state, but the Terri Schiavo case gives me absolutely *no* confidence that the default standard procedure would be to keep a person on life support unless there was a living will stating otherwise. Let's face it, in Terri's case there is no living will stating that she would want life support taken away, and yet that is exactly what was done until Jeb Bush stepped in and had her feeding tube put back in. Perhaps Terri would have wanted her life support removed, but perhaps she wouldn't have. The courts acted only based on verbal testimony of her husband saying that she once told him she would not want to be kept alive in a vegetative state. He could be telling the honest truth, or he could be outright lying; who knows?

Not that I think my husband would ever purposefully go against my wishes, but I don't know who might end up being the one who is in charge of making decisions about my life. What if my husband has already died and so have my parents? What if my child has some sort of bone to pick with me? Or what if I never had the chance to express my wishes to my survivors? I mean if it were really the case that you are kept on life support unless you have a living will stating you would not want life support, then Terri's feeding tube would never have been removed. To me, having no documentation as to your wishes, be they to live or to die, is as good as having never made your requests known verbally. Because now it will be up to doctors and lawyers and juries to decide if the person responsible for you is telling the truth or not or has your best interests in mind or not. It's like a he-said-she-said thing. You can claim anything you want, but where's the evidence?

I guess what's so sad about these situations is that it's hard to know what to do. I feel it's important to think about, but even if you are careful and have everything in writing, it's hard to think of every possible circumstance. Maybe Terri would have thought, before her heart attack, that she would have wanted to die if she was in a persistent vegetative state, but maybe now that she's in that state, she's content and happy and would not want to die. Or maybe Terri thought she would have wanted everything possible done to sustain her life, but now that she's in this vegetative state, she is sick of living a tortured existence. So even if you think you know, do you *really* know what you'd want? How can you know what it would be like, or how long you'd want to live that way unless you experienced it? No wonder relatives and doctors and courts have such a hard time making these decisions! Anyway, I guess I'm getting a little more philosophical, but my point is that I think it's anything but a simple straightforward course of action that applies in all situations in the absence of a living will...

[mamaroni]

Originally posted by mum2sarah
Anyway, I guess I'm getting a little more philosophical, but my point is that I think it's anything but a simple straightforward course of action that applies in all situations in the absence of a living will...

I didn't mean to imply that, but I guess I did! I think living wills came into existence at all because of right to die issues. If you don't have a living will or similar type of document, you won't be taken off life support w/o the courts being involved. That is a better way to put it. Can it still happen? Yes, as you've pointed out with the Schiavo case. Just like a regular "To my daughter I give my aunt Ida's antique pearls" kind of will can be contested in court.

Anyway, I don't think this is, and didn't mean to imply that this is, a straightforward issue.

[Greaseball]

Otherwise, like I said above, I think the default situation is that you'd be kept on life support indefinitely.

Really? I thought that due to health care costs the decision would be to terminate life support after only a few days. I personally know people who have spent months in comas only to come out just fine, so I would want to have that opportunity.

[mum2sarah]

mamaroni,
oh, please don't take what I said personally. I'm just frustrated with the whole complexity of it all, and sort of venting a bit. I didn't mean to imply that you were oversimplifying things, but thank you for clarifying: I see what you mean. I just feel so badly for the poor juries who have to decide these things. I would never want to put that burden on them, kwim?

[mamaroni]

Originally posted by Greaseball
Really? I thought that due to health care costs the decision would be to terminate life support after only a few days. I personally know people who have spent months in comas only to come out just fine, so I would want to have that opportunity.

If they did that, they would be killing you, and I just don't see how they could do that. Now, maybe there are some instances or some specific state laws I'm not familiar with (well, probably there are) but I just don't think the doc or hospital staff can just say "well, this is too expensive, let's unplug her."

mum2sarah, didn't take it personally, but just wanted to clarify.

It's a really, really complicated issue, that is for sure. I'm going to try and do some more legal research on this. Now I want to know for sure!