Living Wills--I need help understanding the nitty gritties...

[PeterPan]

In our state you have a document you sign, and it has scenarios and terms I'm trying to understand or understand the implications of.

 

1) remove or withhold life-sustaining treatment, including nutrition and hydration, if terminal.

 

2) remove or withhold life-sustaining treatment, if in a permanently unconscious state.

 

3) sign an extra spot to withhold nutrition and hydration if in a permanently unconscious state. 

 

For one thing, what defines a permanently unconscious state and how likely is this to happen?  Under what circumstances does this happen?  Don't freak me out, just a really brief explanation.  I found their legalese definition, but what does it really mean?  What kind of scenario is that?

 

2nd, I've always thought of a living will as being useful for removing life support.  I was all good with that, but I'm really confused by the nutrition and hydration thing.  To me it seems odd to withhold food, but I know NOTHING on the issue.  I vaguely remember reading that maybe continuing with nutrition or hydration was at some points worse, but then I read something saying dying of dehydration (what the person in effect dies of?) was horrible, horrible, horrible.  Does anybody know enough about this to explain that clearly?

 

Then there's that section you can sign permitting withholding of nutrition and hydration if in a permanently unconscious state.  It specifies they would only do this if the nutrition and hydration would not provide comfort or relieve pain.  Are there scenarios under which this is reality, or is it smoke and mirrors?  I mean, aren't you in essence saying I'd live if you fed me, but I don't want to live like that so pull the plug? Are they saying the person is at that point, unfortunately, brain dead, not feeling anything, so it doesn't matter?  

 

Is permanently unconscious state legalese for brain dead?  

 

Fourth (or is this 5th?), do I want nutrition and hydration withheld if I'm terminal???  Again, isn't that painful?  Then it says they'll help your pain, but isn't that sort of like taking morphine because I'm dying of dehydration?  Or maybe in some cases it's more compassionate?  Maybe in some but not others???

 

Ok, final thing I'm confused about.  You have this document, all pat and tight, and there's no discussion of things like give it 6 weeks, see if I croak or bounce back, the way someone had discussed in another thread.  Is that not the norm?  Is the issue that they have the form but then have to figure out when/whether to implement it and that is all done on the fly?  If you want the 6 weeks, you need to note that somewhere?  You just tell whoever has your health power of attorney?

 

Sorry to be so morbid, but I was hoping maybe we'd have a couple nurses or docs or informed individuals who would know about these things.  TIA.

[TrulySusan]

I don't know the answers to all your questions but permanently unconscious is NOT brain dead.  Brain dead means you have absolutely no brain function, even at the most basic levels.  Permanently unconscious is like permanent coma.  Does that make more sense?  Some brain injuries are so severe they kill off a lot of cells and even though the person can breathe off the ventilator, they are not awake and don't respond to much besides pain.  Since they cannot chew or swallow, they would need to have a feeding tube placed to deliver nutrition directly to their gut.  Fluids are delivered via IV.  Hope that helps-your posts have helped me so much since I found this site.

[PeterPan]

I don't know the answers to all your questions but permanently unconscious is NOT brain dead.  Brain dead means you have absolutely no brain function, even at the most basic levels.  Permanently unconscious is like permanent coma.  Does that make more sense?  Some brain injuries are so severe they kill off a lot of cells and even though the person can breathe off the ventilator, they are not awake and don't respond to much besides pain.  Since they cannot chew or swallow, they would need to have a feeding tube placed to deliver nutrition directly to their gut.  Fluids are delivered via IV.  Hope that helps-your posts have helped me so much since I found this site.

Wow, that's rough to think about.  Thanks for explaining that.  The two cases in the news were involving brain death, and that seems so much more obvious.  So is it ethical then not to give nutrition and hydration to a person in that position?  They wouldn't have had that for thousands of years, clearly that's the case.  The norm would have been for the person to die.  Now we have all these amazing technologies, so we have to make the choice.

[Pawz4me]

This is the explanation I heard about the difference between coma, persistent vegetative state and brain death.  It was given by a neurologist being interviewed on CNN in response to the couple of cases that have been in the news recently --

 

Think of it in terms of a television.

Coma = Some interference on the screen, but the picture is still very much there.

Persistent vegetative state = A television screen full of "snow."  (I don't know whether or not this is the same thing you're referring to as a permanently unconscious state.)

Brain death = Totally blank screen.

 

I don't know the ins and outs of providing nutrition and/or hydration in any of those scenarios.

 

I think most frequently brain issues occur following things like a very hard blow or other injury to the head, an aneurysm that bursts, etc.  And maybe strokes or blood clots?

 

As far as withholding hydration -- This is very limited experience, and no doubt someone else will know better.  But I'm thinking of terminally ill patients in Hospice care.  I *believe* in those situations, near the end they withhold hydration except for wetting the lips and, if the patient is capable, ice chips.  That's been my experience with the couple of people I know who've gone through that, but I don't know if it was due to their individual circumstances or if it's standard procedure.  If it's standard procedure, then I assume it's because providing hydration causes more issues than it helps.

 

Regarding artificial nutrition -- My experience with my mom was that one of the side effects is often uncontrollable diarrhea.  Sometimes in copious amounts.  There are different "foods" that can be tried to help minimize it, but from what I understand it is a problem even on the "food" that agrees best with an individual.  And of course a lot of diarrhea in a bedridden patient can lead to all sorts of skin problems.  A catheter (or a tube similar to a catheter) can be used if necessary.  But it's yet another thing the patient is hooked to.

 

As far as "giving it six weeks" -- Obviously you'd want to share that with your health care power of attorney.  To make sure all bases are covered I would definitely want it included in the living will.  Because I *believe* in most cases a living will takes precedence over anything a HCPOA says.  I'd need to do some research to absolutely verify that, but I do believe it is correct.  There should be some provision for attaching an addendum/codicil to a living will, even one done in a form (I'm guessing this is an online form and you check off boxes?).  The trick is that you need to find out what is required for it to be considered valid in your state.  Sometimes it's just your signature and the date signed, sometimes witnesses are required, and in some states notarization or other steps may be required.

[ThatHomeschoolDad]

I have one, and carry it with me to appointments for the office staff to photocopy -- they're usually amazed and very grateful, as most patients don't do this.

 

My only advice to add to the above is get an attorney to draw it all up, maybe wrapped in with a session to make a regular will.  Online and freebie forms abound, but only a local attorney will know the ins and outs for your state, especially in light of recent HIPAA changes.  Yes, it may cost you a couple hundred bucks, but compared to what it's in preparation for -- potentially 6-7-figure medical care-- it's a teeny sum.

[G5052]

These issues are indeed extremely complex.  One if the key issues is picking someone to make the decisions who is going to follow your wishes and be reasonable about it.  

 

I've shared here before that my mother put someone in charge who refused to make the hard decisions.  The living will basically just put someone in charge and wasn't terribly specific other than "not expected to recover" language that allowed the POA to make the call.  There was nothing about situations where the living will would override the POA.  She was in the advanced stages of dementia (i.e. no response, no interaction, couldn't move), and they tube fed her for several months.  This involved strapping her down with three staff members involved, three times a day in order to get water and nutrition in.  When they did this, she would "wake up" and scream and cry.  Sometimes she would be so agitated afterwards that they had to keep her strapped in the bed for several hours until she quieted down.  Other relatives didn't know about this until her sister visited one day and witnessed this.  Thankfully she put pressure on the facility director to find out what the story was (technically they weren't supposed to share anything medical with us), and we put pressure on the relative in charge to make a decision.  She was put into hospice with no food and no water, and she faded away peacefully several days later.

 

Some years earlier, when my dad hit that point, my mother claimed there was no living will and that she would never authorize hospice.  He was in-and-out of consciousness, and pretty good at times but rapidly declining and on tube feeding and daily transfusions of blood.  Thankfully the same relative that caught the issue with my mother found out what was going on, and called me.  I had a copy of the living will that I was able to get to the doctor.  She called the facility and had them call her when he was clear, and then she zipped over there with the living will and had him sign himself into hospice.  I'm not sure if the living will was really necessary or if it just called the doctor into action, but he signed to stop tube feeding and blood transfusion, and to keep up with liquids.  He had a stroke a few days later, and died within hours.  

[magnificent_baby]

I don't know all of your answers but I will give you a few pieces of insight. I was an ICU nurse, but it's been several years so keep that in mind. I think the NUMBER 1 thing is to make sure your family is very much aware of your wishes. In my experience, we went with the decision of the family when it came to those issues. Of course if family members were not in agreement, I am sure the living will would be used. What I recall is families coming together to make the decision (and not so much pulling out the living will right there), so that is why I stress to make sure your family knows your wishes.

 

Regarding brain death (again this was many years ago, but I think it is still true). Each hospital has it's own definition of brain death. It could be very, very detailed. It could be very vague. When and where I worked, it was vague. So much so, that I had a young patient who was within hours of having their organs harvested, began to wake up. The patient had been declared brain dead, yet walked out of our ICU 2 weeks later. Sorry if that scares you, but I will never forget that, and it has changed my whole outlook of the issue. I am a very firm believer in giving the brain time to heal. 

 

As far as no nutrition, personally, I wouldn't ever do that but that's up to you (ETA: unless I was on hospice, which would make my entire response to your questions completely different). It helps that nearly my entire family is in the medical field and we have very similar views so hopefully won't be any conflict should that happen. I have had numerous patients that were ventilator dependent for months and months, and were able to heal. Of course that's not always the case. We were not a trauma center though, and had the room and staff to care for longer term critically ill patients. I'm sure it's a different case for other hospitals. 

 

I know people do not want to be a burden upon others, but I view it as a blessing and honor to be able to care for another human being that cannot care for themselves, whether it be need help with simple daily activities or the inability of breathing on their own.

 

It's a very difficult issue, and not everyone will agree with me but I just wanted to add my perspective. 

[ThatHomeschoolDad]

I don't know all of your answers but I will give you a few pieces of insight. I was an ICU nurse, but it's been several years so keep that in mind. I think the NUMBER 1 thing is to make sure your family is very much aware of your wishes. In my experience, we went with the decision of the family when it came to those issues. Of course if family members were not in agreement, I am sure the living will would be used. What I recall is families coming together to make the decision (and not so much pulling out the living will right there), so that is why I stress to make sure your family knows your wishes.

 

:iagree:

 

A great line I got from DD's child life specialist applies here:

 

If it's mentionable, it's manageable.

 

Talk now, talk often, and it won't be taboo, and won't be as difficult when the time comes to make real decisions.

[PeterPan]

 

My only advice to add to the above is get an attorney to draw it all up...

Of course we have one.  ;)  

 

These issues are indeed extremely complex.  One if the key issues is picking someone to make the decisions who is going to follow your wishes and be reasonable about it.  

 

I've shared here before that my mother put someone in charge who refused to make the hard decisions.  The living will basically just put someone in charge and wasn't terribly specific other than "not expected to recover" language that allowed the POA to make the call.  There was nothing about situations where the living will would override the POA.  She was in the advanced stages of dementia (i.e. no response, no interaction, couldn't move), and they tube fed her for several months.  This involved strapping her down with three staff members involved, three times a day in order to get water and nutrition in.  When they did this, she would "wake up" and scream and cry.  Sometimes she would be so agitated afterwards that they had to keep her strapped in the bed for several hours until she quieted down.  Other relatives didn't know about this until her sister visited one day and witnessed this.  Thankfully she put pressure on the facility director to find out what the story was (technically they weren't supposed to share anything medical with us), and we put pressure on the relative in charge to make a decision.  She was put into hospice with no food and no water, and she faded away peacefully several days later.

 

Some years earlier, when my dad hit that point, my mother claimed there was no living will and that she would never authorize hospice.  He was in-and-out of consciousness, and pretty good at times but rapidly declining and on tube feeding and daily transfusions of blood.  Thankfully the same relative that caught the issue with my mother found out what was going on, and called me.  I had a copy of the living will that I was able to get to the doctor.  She called the facility and had them call her when he was clear, and then she zipped over there with the living will and had him sign himself into hospice.  I'm not sure if the living will was really necessary or if it just called the doctor into action, but he signed to stop tube feeding and blood transfusion, and to keep up with liquids.  He had a stroke a few days later, and died within hours.  

Ok, so the living will document in our state (pat form that you can make comments on) covers terminal situations and permanent unconscious state.  Is the situation you had with your mother and the dementia either of those?  Or at that point was it the HCPOA person, no living will guidance, and then whatever conversations they had had?  I appreciate your sharing about how the food and hydration affected her.  That's stunning.  So essentially she was dying (terminal) and needed to be allowed to die...

 

I don't know all of your answers but I will give you a few pieces of insight. I was an ICU nurse, but it's been several years so keep that in mind. I think the NUMBER 1 thing is to make sure your family is very much aware of your wishes. In my experience, we went with the decision of the family when it came to those issues. Of course if family members were not in agreement, I am sure the living will would be used. What I recall is families coming together to make the decision (and not so much pulling out the living will right there), so that is why I stress to make sure your family knows your wishes.

 

Regarding brain death (again this was many years ago, but I think it is still true). Each hospital has it's own definition of brain death. It could be very, very detailed. It could be very vague. When and where I worked, it was vague. So much so, that I had a young patient who was within hours of having their organs harvested, began to wake up. The patient had been declared brain dead, yet walked out of our ICU 2 weeks later. Sorry if that scares you, but I will never forget that, and it has changed my whole outlook of the issue. I am a very firm believer in giving the brain time to heal. 

 

As far as no nutrition, personally, I wouldn't ever do that but that's up to you (ETA: unless I was on hospice, which would make my entire response to your questions completely different). It helps that nearly my entire family is in the medical field and we have very similar views so hopefully won't be any conflict should that happen. I have had numerous patients that were ventilator dependent for months and months, and were able to heal. Of course that's not always the case. We were not a trauma center though, and had the room and staff to care for longer term critically ill patients. I'm sure it's a different case for other hospitals. 

 

I know people do not want to be a burden upon others, but I view it as a blessing and honor to be able to care for another human being that cannot care for themselves, whether it be need help with simple daily activities or the inability of breathing on their own.

 

It's a very difficult issue, and not everyone will agree with me but I just wanted to add my perspective. 

Yeah, you're kind of freaking me out on the harvesting from people declared brain dead who weren't ultimately dead...  That's where the patness of the form and vagueness is sort of odd.  The living will forms in our state cover terminal and permanent state of unconsciousness.  Were the persons on the ventilators in either of those situations/categories?  Was that another category?  So they take a critically ill person and have to make a judgment call on whether they're terminal or not?  And that moves the legal category to terminal to allow the living will to kick in?  So as long as you're defined as critically ill, they don't yank?  They only pull the plug when they switch you to terminal?  But there's nothing in the living will to guide how conservatively you want that to be handled, mercy.  

 

So you're saying you would not do the no food, no hydration for permanent state of unconsciousness?  I mean this is how brutal and b&w it is.  They want you to sign yes/no to no food/hydration for permanent state of unconsciousness.  Under terminal, they don't even give you that choice.  As you say though, that's so stinking sticky, because it sounds like there's the question of how they even move you over to the terminal category...

 

Did that make any sense?  I think I need a flowchart.  :D

 

And I'm with you that I don't think intentionally ended the life of someone is appropriate if they are alive.  I think allowing someone to die in peace is right.  There's a difference, and honestly I can't tell from the paperwork if they're sorting those out or lumping those together.  Too many implications and things not said, in spite of all the words.

[PeterPan]

Ok, I found something that is helping me.  The Cancer Society has very clear info.

http://www.cancer.org/treatment/findingandpayingfortreatment/understandingfinancialandlegalmatters/advancedirectives/advance-directives-types-of-advance-health-care-directives

 

Apparently brain death is sort of the ultimate version of the permanent state of unconsciousness, and and the PSOU includes what is commonly called persistent vegetative state.  Ugh.  So at least now I know what in the world they're talking about.  Couldn't just say what they meant, lol.  

 

So Magnificent, are you saying you're in favor of continuing nutrition, hydration, AND other forms of life support during a persistent vegetative state?  Were these people in critical care on ventilators who recovered in that category?  With the forms for our state, you either decide for the PSOU whether you want to pull all the plugs or to pull all except food/hydration.  There's no spot there to distinguish maybe like a trial on the ventilator before being called persistent vegetative state, etc.  That's in the weeds though and shows that I don't know how you get those labels and how much care is exercised before assigning them.  You see enough stories on the news about it that I'm not terribly confident about the process.  Maybe you can explain it or have perspective?

[PeterPan]

The Cancer Society links to this 5 Wishes document that is in plain english and valid in many states.  I'm reading through it now, even though it's not valid for ours, to see what I can learn, since it's written very plainly...

 

http://www.agingwithdignity.org/forms/5wishes.pdf

[G5052]

Arg.  The quote tool isn't working correctly for me.  

 

To answer your question OhElizabeth, my mother had been declared incompetent with someone in charge of both her financial and medical issues.  That part I know.  And that person chose not involve anyone else.  I don't know if the facility had a copy of the living will and/or if the document would have made the decision apart from that person. When I read the document, I find it quite vague though IMHO, and perhaps they didn't feel like it was clear.  I do know that the person refused hospice, and tube feeding went on.  The facility and the doctor repeatedly contacted this person to question that decision.  When we finally found out about it, we were able to get the person to agree to hospice.  If we hadn't, the tube feeding would have gone on indefinitely.  

[Tammyla]

Our experience with a loved one and his living-will was that it was disregarded; they gave weight to what his listed spouse / designated (legal definition) wanted and never referred to the actual document. 

 

I would advise plenty of prayer and a good attorney to assist you with the ins and outs of your particular state.

[magnificent_baby]

Ok, I found something that is helping me.  The Cancer Society has very clear info.

http://www.cancer.org/treatment/findingandpayingfortreatment/understandingfinancialandlegalmatters/advancedirectives/advance-directives-types-of-advance-health-care-directives

 

Apparently brain death is sort of the ultimate version of the permanent state of unconsciousness, and and the PSOU includes what is commonly called persistent vegetative state.  Ugh.  So at least now I know what in the world they're talking about.  Couldn't just say what they meant, lol.  

 

So Magnificent, are you saying you're in favor of continuing nutrition, hydration, AND other forms of life support during a persistent vegetative state?  Were these people in critical care on ventilators who recovered in that category?  With the forms for our state, you either decide for the PSOU whether you want to pull all the plugs or to pull all except food/hydration.  There's no spot there to distinguish maybe like a trial on the ventilator before being called persistent vegetative state, etc.  That's in the weeds though and shows that I don't know how you get those labels and how much care is exercised before assigning them.  You see enough stories on the news about it that I'm not terribly confident about the process.  Maybe you can explain it or have perspective?

 

I'm sorry, I'm not familiar with those specific terms. I've not worked in ICU in about 8 years or so, and it could be different now. When I did work, it was more of a decision made based on the physician's advice, a few tests performed (EEG, CT, etc) and the family's wishes. Our patient's were mostly middle age and older, as most traumas were transferred to trauma centers. The one patient though that ended up walking out, was a very, very young adult (an intentional overdose) but it was rare to have patients that young. Personally, I would choose long term ventilation and hydration/nutrition for a least several months, if there was any chance at recovering. A tracheotomy would be performed if long term ventilator support was needed. I am fortunate though, that I have several family members in the medical field (including my husband and sister as mid level providers), so their professional experience would help in those decisions.

 

I am sorry your forms are so difficult in helping you decide. There are so many variables when one is critically ill, it is a shame you have to choose between those options. That would be so hard.

 

I will leave you with a link to look at if you wish. I did some research on brain death over the years, because as I said, that one case has stuck with me forever. I found this doctor online many years ago, and have conversed via email a few times. It is a physician on a mission to educate people about the term "brain death". I just noticed he has a lot of new information and it may really help you sort this out. WARNING: He is very pro-life and very much a Christian. I completely agree with his perspective (though I'm sure not all will), and I'm really grateful for this thread because I need to look at his site again, it's been awhile and I'm sure there are many updates. 

 

http://www.lifeguardianfoundation.org/

 

ETA: Just saw on his website, there are many different forms you can fill out and use. Didn't look them over, but if you share his prospective, they may be helpful to you. 

[Twigs]

The Cancer Society links to this 5 Wishes document that is in plain english and valid in many states.  I'm reading through it now, even though it's not valid for ours, to see what I can learn, since it's written very plainly...

 

http://www.agingwithdignity.org/forms/5wishes.pdf

5 Wishes is not valid in my state either, but I did learn a lot at that site.

 

For myself, (not that anyone else should make the same decisions I made, but just to share) if I am unable to make the decisions, unable to breath or eat on my own, I wish that no artificial measures be used. In other words, it is ok for me to die. A body can live longer when hydrated, so I want no hydration, either, and no antibiotics, no dialysis.

 

Hope  you find all the information you need.

[goldberry]

We considered a living will, but both DH and I have the same view on things, and don't have any family who would cause any issues.

 

DH knows how I feel.  When it came time to fill out the living will, I also was disturbed by the black and whiteness of it.  I trust DH.  I also felt that if he needs extra time in order to feel ok about taking me off the machines, then he should have that time and I didn't want it dictated by a document (as in a hospital or doctor trying to "rush" him because of a living will).  I trust that he would never keep me alive indefinitely or against what he knows are my feelings.

 

I would be more concerned about having a living will if I thought there might be family who would fight to keep me on machines.  That's not the case in my family.  We all feel pretty much the same about it.

[magnificent_baby]

We considered a living will, but both DH and I have the same view on things, and don't have any family who would cause any issues.

 

DH knows how I feel.  When it came time to fill out the living will, I also was disturbed by the black and whiteness of it.  I trust DH.  I also felt that if he needs extra time in order to feel ok about taking me off the machines, then he should have that time and I didn't want it dictated by a document (as in a hospital or doctor trying to "rush" him because of a living will).  I trust that he would never keep me alive indefinitely or against what he knows are my feelings.

 

I would be more concerned about having a living will if I thought there might be family who would fight to keep me on machines.  That's not the case in my family.  We all feel pretty much the same about it.

 

You stated this so well, and this is how I feel too. 

 

OP, I would hold off on signing anything until you are really comfortable with the document. Think it over, pray about it, and discuss with family.  :grouphug:

[StephanieZ]

FWIW, my understanding is that nutrition and hydration being withheld is not painful. They are never going to withhold these things if the patient can express or act on drinking or food. They are talking about not using a feeding tube. A feeding tube can only be used naso-gastrically for a limited period of time (weeks), so if you can't eat long-term, it means you have to have a feeding tube surgically installed. If you have every had a NG tube, you'll know they are NOT comfortable either. Noone wants an NG tube forever. IV hydration obviously isn't painful, other than having an IV, which is actually rather uncomfortable IMHO.

 

People can sometimes live for YEARS unconscious, in a coma, brain dead, etc, if you continue feeding and hydration.

 

I know that if I had a disease that made me unconscious or simply miserable (say, late stage dementia), and I could no longer eat or drink, I would hope my loved ones would look for any means possible to legally and ethically end my life. I, personally, would not want to live for years that way. My living will allows removal of medical procedures as well as food and hydration. If I lived somewhere it was legal, I'd also allow physician assisted suicide, personally. 

 

FWIW, IME, family members can have great influence over whether and how your living will and advanced directives are followed. So, be sure to nominate a Health Care Proxy whom you trust and be sure to clearly communicate your wishes, in as much detail as possible.

 

I also suggest people specify desires for life-extending care in the case of dementia. At what point would you actually prefer to be allowed to die? 

[mamaraby]

In Wisconsin there are standard forms you can print off the state's website (link here in case it helps others) that do not require an attorney or a notary, but do need to be witnessed by two non-related people who do not have a financial stake and would not benefit from your estate.  In Wisconsin there are two forms - a Living Will and Power of Attorney for Health Care - that you would potentially fill out.  Hospice has a good page on coma and persistent vegetative state.

 

I love and trust my husband and while we share similar views in end of life decisions, I still think it's important to complete both the Living Will and the Power of Attorney for Health Care.  I think as a society we tend to extend life beyond when it's reasonable or wise.  There is a point at which a person is gone, but our heroic, life loving selves are unable to accept that it's time to move on.  As much as I love my husband and all of my family members, I would not want to be kept alive on machines for them or because they're not ready to let me go.  We're never going to be ready to let each other go even when we're in our 90s and have lived a good long life.  Rather than place my loved ones in a position to make this decision when they're under a great deal of stress and emotional duress, I think it's important to make these decisions now when we have the luxury of time and health (well, to the best of my current knowledge anyway).  

 

I take the same view as Twigs and indicated accordingly on my form.  I also used the last page of the Health Care POA to indicate that I'd donate any needed organ or part.

[PeterPan]

In Wisconsin there are standard forms you can print off the state's website (link here in case it helps others) that do not require an attorney or a notary, but do need to be witnessed by two non-related people who do not have a financial stake and would not benefit from your estate.  In Wisconsin there are two forms - a Living Will and Power of Attorney for Health Care - that you would potentially fill out.  Hospice has a good page on coma and persistent vegetative state.

 

I love and trust my husband and while we share similar views in end of life decisions, I still think it's important to complete both the Living Will and the Power of Attorney for Health Care.  I think as a society we tend to extend life beyond when it's reasonable or wise.  There is a point at which a person is gone, but our heroic, life loving selves are unable to accept that it's time to move on.  As much as I love my husband and all of my family members, I would not want to be kept alive on machines for them or because they're not ready to let me go.  We're never going to be ready to let each other go even when we're in our 90s and have lived a good long life.  Rather than place my loved ones in a position to make this decision when they're under a great deal of stress and emotional duress, I think it's important to make these decisions now when we have the luxury of time and health (well, to the best of my current knowledge anyway).  

 

I take the same view as Twigs and indicated accordingly on my form.  I also used the last page of the Health Care POA to indicate that I'd donate any needed organ or part.

That article was incredibly helpful, thank you.

 

We considered a living will, but both DH and I have the same view on things, and don't have any family who would cause any issues.

 

DH knows how I feel.  When it came time to fill out the living will, I also was disturbed by the black and whiteness of it.  I trust DH.  I also felt that if he needs extra time in order to feel ok about taking me off the machines, then he should have that time and I didn't want it dictated by a document (as in a hospital or doctor trying to "rush" him because of a living will).  I trust that he would never keep me alive indefinitely or against what he knows are my feelings.

 

I would be more concerned about having a living will if I thought there might be family who would fight to keep me on machines.  That's not the case in my family.  We all feel pretty much the same about it.

Yes, that's what I'm realizing, based on the posts here, that a lot of it boils down to what your family says in the moment.  And it's not just the b&wness of the forms but that they seem to have implications or things going on behind the scenes you don't realize.  They frame it one way and it means something else.  So many of the things I thought I understood about this were incorrect.  Persistent vegetative state is actually a step beyond a coma, which I didn't realize.  People have organs removed when they're still on ventilators and not dead.  I mean this just get hair-raising.  And I didn't realize how much FARTHER the living will forms could be taken.  I just figured it meant exactly what it said, but then they can take that and say you didn't mean for any care in a lot of circumstances where you might have wanted it!  Just way too b&w, let 'em die, absolute for my taste.

 

Sigh.  Ugly topic, sorry.

[PeterPan]

I'm sorry, I'm not familiar with those specific terms. I've not worked in ICU in about 8 years or so, and it could be different now. When I did work, it was more of a decision made based on the physician's advice, a few tests performed (EEG, CT, etc) and the family's wishes. Our patient's were mostly middle age and older, as most traumas were transferred to trauma centers. The one patient though that ended up walking out, was a very, very young adult (an intentional overdose) but it was rare to have patients that young. Personally, I would choose long term ventilation and hydration/nutrition for a least several months, if there was any chance at recovering. A tracheotomy would be performed if long term ventilator support was needed. I am fortunate though, that I have several family members in the medical field (including my husband and sister as mid level providers), so their professional experience would help in those decisions.

 

I am sorry your forms are so difficult in helping you decide. There are so many variables when one is critically ill, it is a shame you have to choose between those options. That would be so hard.

 

I will leave you with a link to look at if you wish. I did some research on brain death over the years, because as I said, that one case has stuck with me forever. I found this doctor online many years ago, and have conversed via email a few times. It is a physician on a mission to educate people about the term "brain death". I just noticed he has a lot of new information and it may really help you sort this out. WARNING: He is very pro-life and very much a Christian. I completely agree with his perspective (though I'm sure not all will), and I'm really grateful for this thread because I need to look at his site again, it's been awhile and I'm sure there are many updates. 

 

http://www.lifeguardianfoundation.org/

 

ETA: Just saw on his website, there are many different forms you can fill out and use. Didn't look them over, but if you share his prospective, they may be helpful to you. 

Honestly, this stuff has been so disturbing to try to sort through.  I think we *thought* we understood the issues, but we understood them only as we meant them and interpreted the words on the paper to mean.  I don't think anybody looks at the living will terminology and goes yes, chop my heart out before my ventilator even stops. That's just not at at what we envision.  We assume it's this sort of altruistic thing.

 

Well I appreciate the links and the clarity and perspectives.  They're actually really hard issues to ponder, because you have to hit head-on these issues.  As christians we value life and the defenseless, compassion and care, the value of someone in all states.  That's our stated value.  But we also have these competing values of one, not being afraid to die, and knowing that some of these measures weren't available for thousands of years of humanity.  So in our house as a couple we look at it and wonder how much is sort of a fighting of death, if that makes sense, sort of a spiritual fear.  I think we saw the living will paperwork in that light without realizing the other way of interpreting it sort of as euthanasia, frankly.  And yet, can I call it euthanasia and fault someone if they let their loved one die peacefully in the way in which people have died for thousands of years in those circumstances?  No, obviously not.  But can it also be a form of euthanasia or condoned suicide using the living will forms, yes, we're now realizing it can be.  

 

So that's tough stuff to sort out!  Thanks for sharing all these links, ladies.  They've honestly kind of blown my mind.  It's rough stuff to read too much of.  You sort of go in circles a while, try to grapple with it, and realize you might not have a pat answer in that situation either, frankly, and that you'd have to pray and roll with it and take good counsel.