Do you have a living will?

RN4ustat, BSN, RN · Mar 21, 2005

I was discussing this with my son today. He is only 16 but is very intelligent and reasonable. I was expressing that I would never want to live in a chronic vegetative state and was rather surprised by his reply. He said "I know it sounds kinda morbid but I'd rather have a dead mother than a vegetable mother. I know you wouldn't want to live like that and I wouldn't want to see you like that. I'd rather know you were resting in peace than drooling and having to have your diaper changed". Although it does sound a little sick, I was impressed that he understands dignity and quality of life at his age. Pretty impressive for a teenager.

allnurses Guide · Mar 21, 2005

To be honest, I've had to wince a couple of times reading this thread. I fully understand that ending your life in a way where you cannot take care of your personal needs is distressing but characterzing a person as a vegetable or remarking about drooling and pooping on yourself is disrespectful to those dear folks who are in that state.

I've had great teachers throughout my life who have taught me to respect others. One example was my anatomy teacher who talked to us at length prior to dissection theatre about the great gift a man and woman decided to bestow upon us by leaving their bodies to science. He warned that he would not tolerate any jokes or disrespectful handling of the bodies. I actually felt a sense of awe as I worked and learned with these folks. We kept body parts separate in containers so that at the end of class, the whole body could be sent to the mortuary for cremation. I was one of the students who asked to be part of the boxing up and transferring of the bodies to the mortuary. It was quite emotional for me and the others.

My grandmother is in a nursing home with dementia and has to have help with toileting and bathing. It doesn't make her any less valuable as a human being.

Some friends from my church right now are agonizing over the fate of their 19 year old grandson, who may be brain dead after a snowboarding accident. All his physical needs are being taken care of by a foley catheter and cleaning up his "poop". He is still a valued member of his family and they don't look at him as a "vegetable", drooling and pooping all over himself.

I think this is what bothers me about this whole subject is that people who are in PVS or have had strokes that incapcitate them are talked about as if they are not worthy of our compassion.

I wonder how it would make a family with a brain damaged child who cannot wipe himself feel to hear their child characterized as a vegetable or hear someone say "please put a pillow over my face or a bullet in my brain"?

Understand I realize the fear - I just wish we would not be so disrespectful.

To the OP - I feel chagrined to admit that my husband and I have not done anything legally in this area. We have talked, at length, especially since Terri Schiavo's heartbreaking situation. Both of us have nothing but disdain for Michael Schiavo - not because he is part of the right-to-die movement but because he has broken his marriage vows and still thinks he has the right to determine Terri's fate.

Karen - thanks for all that info. Definitely will be checking it out.

steph

Dixielee, BSN, RN · Mar 21, 2005

Certainly no disrespect was ever intended toward those living in less than "perfect" bodies. The comment about the pillow or bullet was used to emphasize my feelings on how I would want to live and not live. I would certainly NOT impose that on someone else. I am very much pro life. I would never take part in an abortion and would have to be fired because I would not or could not pull the plug on someone who had not made their wishes clear. I am speaking about those who have made their wishes clear.

I know that there are those who are severely handicapped and require total care. I do not disrespect them or their families. But, I do have a right to an opinion and say so on how I want to live. Personally, I do not want to live like that. There are many conditions I would not want to live in....some I have control over, some I do not. I do not want to live in poverty in a third world country, that is why I live and work in the US. I don't want to be exposed to drunks and abusive people either. BUT, I have made a decision that I will work in the ER. It is a trade off because I am doing what I want most of the time. I don't want to live in a body I cannot control. These are things I can do something about and am making decisions based on what I can change and what I cannot.

I am sorry if you see my comments as disrespectful to those who are handicapped or infirm, it was certainly never my intent, and I doubt anyone here is trying to be disrespectful to others. But we are voicing an opinion in a personal matter.

allnurses Guide · Mar 21, 2005

Dixie - As you have a right to voice your personal opinion, I do also. And I am being honest when I said it made me wince to read comments in this thread.

I do wonder how we as a society have devolved . . . . we have de-legitimized life and that has been happening for decades. The baby in the womb isn't going to have a good life so it is ok to abort it. So based on our own convenience we have abortion and now we have issues at the end of life, based on our own convenience, where we devalue life. "Ah, nobody would want to live this way, we don't want to take care of people this way," so we decide who lives and dies based on our own convenience now. That is why saying you don't want to drool and poop and be a vegetable makes it sound like it is a matter of convenience - rather than realizing we are talking about a human being with value.

I realize that people are thinking it is the compassionate thing to do to pull Terri's feeding tube. Really, as a nurse I completely understand. I worry though about the long term ramifications. The desensitization of the sanctity of life. We use the death penalty on "retarded" people. We abort because we are carrying a girl instead of a boy or a child has a cleft palate and we can't have that, can we? The child would not be perfect? He would get teased - and that is so terrible so lets abort and try again.

There just seems to me to be a downhill turn . .. our society doesn't value life.

Words have meanings and ramifications. Letting our kids talk about elderly folks in nursing homes as vegetables who poop and drool on themselves is wrong. There is little lady at my LTC - she had a stroke years ago and cannot sit up straight in her chair, her right hand is useless, she can barely talk. But every morning she is dressed and at the nurse's station, coffee in hand. It invariable spills down her clothes (she has a large terri cloth bib on). She insists on her morning coffee. Midmorning she always has a chocolate ice cream bar. Most of it drips onto her bib. But she loves it. My kids were shocked at her at first but I take them regularly into the hospital and introduce them to our folks so they have a healthy respect for them. Locally, there is a ranch called "Mountain Jewels Ranch" that is for developmentally disabled adults. They all attend our church. Our kids have grown up with these great people, mostly Down's Syndrome. Both my sons have helped coach their basketball team. All my kids have gone skiing with them. We have our annual picnic at the ranch and they proudly show us the animals they are raising or the horses they ride or the meals they've helped prepare.

Maybe I'm in a special place - I seem to be surrounded by folks who are not perfect. And I'm so grateful for it. And for the education it has given my kids not to pick on those less fortunate than you. So maybe I'm extra-sensitive to hearing people labeled as vegetables.

If so, then I guess there are worse things I could be accused of.

steph

DecafMom · Mar 21, 2005

I was discussing this with my son today. He is only 16 but is very intelligent and reasonable. I was expressing that I would never want to live in a chronic vegetative state and was rather surprised by his reply. He said "I know it sounds kinda morbid but I'd rather have a dead mother than a vegetable mother. I know you wouldn't want to live like that and I wouldn't want to see you like that. I'd rather know you were resting in peace than drooling and having to have your diaper changed". Although it does sound a little sick, I was impressed that he understands dignity and quality of life at his age. Pretty impressive for a teenager.

I, too, have had this same conversation with my 16 year old son, with very similar remarks from him. I would never want to be a burden on any family members, but most definitely not to children. I wouldn't want to think that my children couldn't go to the high school basketball game or the movies or bowling or whatever because they have to stay home and "take care of mom" while dad works. That would be so unfair to them.

Thankfully, my husband and I went through an attorney three years ago and had living wills, wills, and estate planning done. There is no question to our wishes, and we have also verbalized our wishes to family members. My husband is my closest family member and if there is anything that has inadvertently been left out of our directives, he should be the one to make those decisions on my behalf.

That all said, I hope the day never comes that such decisions need to be made in my family. We are protected should they need to be made though.

My heart goes out to all the people who know and love Terri Schiavo. It really is a tragic situation.

UM Review RN, ASN, RN · Mar 21, 2005

I don't have a living will yet because no one in my immediate family is knowledgeable enough about medical issues to make that decision for me.

There are certain circumstances where I wouldn't mind being fed via a feeding tube or being intubated, because I'd have a decent chance at survival. But I wouldn't trust most docs to be honest with my family--they're bent on survival at all costs. My family would be too. Faced with the decision to pull the plug, I don't think they could do it.

I'm not saying that I wouldn't get great care, but I know that it'd never be according to my wishes. It's all well and good to have a Living Will or express your wishes, but in my experience, once you can't talk for yourself, you then have to hope that your family will carry your wishes out. The hospitals and docs are more concerned with being sued later than following someone's wishes who cannot express them.

So that's my opinion--realistically speaking.

allnurses Guide · Mar 21, 2005

I don't have a living will yet because no one in my immediate family is knowledgeable enough about medical issues to make that decision for me.
There are certain circumstances where I wouldn't mind being fed via a feeding tube or being intubated, because I'd have a decent chance at survival. But I wouldn't trust most docs to be honest with my family--they're bent on survival at all costs. My family would be too. Faced with the decision to pull the plug, I don't think they could do it.
I'm not saying that I wouldn't get great care, but I know that it'd never be according to my wishes. It's all well and good to have a Living Will or express your wishes, but in my experience, once you can't talk for yourself, you then have to hope that your family will carry your wishes out. The hospitals and docs are more concerned with being sued later than following someone's wishes who cannot express them.
So that's my opinion--realistically speaking.

Your comment about not being able to trust docs to be honest . . . really struck me. The 19 year old I've spoken of who had a snowboarding accident last Friday and is on a vent and in a coma . . . .his family has gotten conflicting messages from three different docs. It ranges from brain dead, maybe some brain waves, and there is hope for recovery with time.

I realize it is early - brain swelling and all. But families are in agony during this time and it is hard to make decisions.

I'm just praying for clear-cut choices for the family - and for recovery.

Hope is not a bad thing.

Sorry if I've been forceful on this issue - seems like lots of stuff is coinciding with this subject.

I appreciate everyone's comments though - having this dialogue is a good thing.

steph

UM Review RN, ASN, RN · Mar 21, 2005

It's just been my experience that families seem to take over after the patient cannot speak. I can think of many--not one, not a couple, not several--many examples of patients' wishes not being carried out or being completely overridden by family members or overzealous docs.

Most recently, we had a patient who was >95 years old and in renal failure. K = >6.0. BP in the dumper.

What did the doc do?

Oh, he ordered kayexalate enemas and a dopamine drip. Of course. :stone

(Before you ask, yes, we took that one promptly to the Ethics Committee and the patient was taken off all that junk, per his wishes.)

allnurses Guide · Mar 21, 2005

It's just been my experience that families seem to take over after the patient cannot speak. I can think of many--not one, not a couple, not several--many examples of patients' wishes not being carried out or being completely overridden by family members or overzealous docs.
Most recently, we had a patient who was >95 years old and in renal failure. K = >6.0. BP in the dumper.
What did the doc do?
Oh, he ordered kayexalate enemas and a dopamine drip. Of course. :stone
(Before you ask, yes, we took that one promptly to the Ethics Committee and the patient was taken off all that junk, per his wishes.)

You know, just thank you God for ethics committees.

steph

jnette, ASN, EMT-I · Mar 21, 2005

Thought provoking thread.. thank you.

I, too, have procrastinated, and every year as I age one more year, I keep telling myself "I really need to take care of this". For MY sake, and for my family's sake.

I have a relatively benign cardiac procedure coming up in two weeks.. cardiac ablation. And while there seems to be little risk, there is never a guarantee that there might not be SOME little "glitch".. an unintended puncture here, a fatal rythm triggered there... one just never knows.

With this in mind, I have promised myself to speak with my son and daughter.. my dh already knows my wishes. But as stated here, I really need to put it in writing. I like this idea of formulating my wishes in writing and emailing them to my children, and sis. At least that way they would ALL have the same identical copy which they can print out.. no, I'm sure it's not "legal".. but it's a start.

Karen, thank you for the links ! Now I have a place to start, and can get down to the nitty gritty.

Steph, I appreciate your input, and respect your courage and your steadfastness. I happen to agree with most of what you say and feel above.

I, too, believe there is intrinsic value in life, and that value is not derived from ourselves or our fellow humans.. rather that our worth is derived from our Creator.

As far as going "over and beyond" when attempting to keep a person alive, I also feel that we were not MEANT to live forever. I don't necessarily agree with all the EXTREME measures now at our disposal to prolong a life. I see this at our facility and have to wonder if this is really "ethical"... some very aged folks with numerous, numerous comorbidities being started on dialysis.

In the days before dialysis, these souls would have been allowed to die in peace.

It does get very confusing.

For myself, I choose not to be kept alive by EXTREME measures for an unreasonalble amount of time. Yes,.. do try, put me on a vent, if neccessary if there is HOPE for survival.. do what can be done.. but when it is clear that I am braindead, or my survival is no more than a vegatative state..do not keep me "alive" on some machine. Allow nature to take its course. If God intends for me to live, I will.. even if not hooked up to these contraptions.

I understand there must be a period of "TIME".. such as in your friends' case with their son. If this were my child, I would beg for that "time" as well.

So... now I'm going to sit down and formulate my letter.. thanx for the motivating dialogue and kick in the pants ! :)

Home Health Columnist / Guide · Mar 21, 2005

creating an advanced directive is very simple.

a. choose one form rabout living wills from the links provided above or handwrite/type up one yourself.

b. have two persons be witness to your signature; best if they are not relatives. neighbor or nursing colleagues would be good. remember they are only witnessing your signature as the person who wrote the document about your personal wishes so you want witness to be "without influence" in your decision making (in case of famly squabbles).

c. choose someone to be your "power of attorney for healthcare": someone who will follow your wishes when you are unable to speak for yourself and write up a statement to that effecr, also two witnesess to your signing document.

d. review or update document ~ every 10 years so persons know your wishes are unchanged.

that's legal in most states in us.

see:

settling up, state by state

guidelines dictate structure of living wills

http://www.buffzone.com/extra/last-rights/day1p5.html

info listed in state map format:

http://www.last-rights.com/statewills/mapframe.html

allnurses Guide · Mar 21, 2005

Jnette - beautiful post. Thanks.

steph