Life Support or Treatment - What do you call it?

[dwcrawford]

A close up of a donkey.  thus the caption "I'm ready for my closeup Mr. Demille." Gloria Swanson in Sunset Blvd.

[Malibu]

OH!  Hahaha!  It sort of looks like a doggies muzzle but then the eyes are missing... So then it looked like a butt!   

Well it is cute!

[petey]

OH!  Hahaha!  It sort of looks like a doggies muzzle but then the eyes are missing... So then it looked like a butt!   

muuuuuhaaaaaahaaaaaa!!!  Dan's now showing us his "butt" .....  muuuuuhaaaahaaaa!         

[aharris2]

dialysis, lantus, and spam sandwiches... all life support in their own ways. I'm not sure why this is an important question either.

Dialysis - not particularly pleasant, necessary to live if your kidneys fail.
Eating - very pleasant, necessary to live.
Ventilator - horrible, necessary to live if you cannot breathe on your own.

The question is how intrusive is the form of life support and what kind of life is supporting? Is the "cost" worth the benefit?

Eating...OMG!!! I have to do it 3 times a day, so it is quite intrusive but kinda nice. So the cost is low. If this is my only necessary form of life support then it is supporting a relatively good life (maybe not, but probably). No reason to discontinue this life support (pass me a spam sandwich, please).

Dialysis... Intrusive, 3 times a week, 6 to 8 hrs shot then naptime... This is a high cost. Benefit... this is totally judged by the individual. Some feel good post dialysis and in their off days. Some can continue to work. Some still enjoy the little things - time with their spouse, their children, their friends, pursuing their hobbies. Some simply consider life worth living. How many have stayed around to see their children into adulthood. These individuals consider the benefit worth the cost and do not discontinue this life support.

The Ventilator... Intrusive 24/7, bulky? you remain tied to a bed, a hospital room? The cost is quite high. The benefit? Is there hope for a better future? Then maybe there's a benefit worth the cost.

There is a wide spectrum of things that might be identified as life support. Identifying dialysis as life support allows for the next step - the question of is it okay to discontinue dialysis or is it suicide. That seems to be why it is considered an important question (we have a fairly hot thread devoted to that).

I consider quality of life (as viewed by the individual) to be important, not how the inevitable is being delayed, no matter what you call the method.

[girliekick]

cdw - i assume this thread was posted bc of something i said in a different post. If so I hoped i better explained myself. Either way if u want to talk about the subject more you can always pm me.

Monrien- I wasnt trying to offend you, but the way i see it is treatment vs cure, not life support vs treatment.  so i really didn't think it controversial to say 'life sustaining treatment'.

I truely do not think there is a wrong side to this coin.
Much love
girl

[monrein]

Heavens above girliekick, I'm not remotely offended.  I have zero idea why you think you might have offended me.  I like words and languages and the meanings of words.   I posted a link which discusses various forms of life support and there are always a variety of shades of meaning when we attempt to define or describe something.  There are personal definitions, medical definitions and legal definitions.  I much prefer discussing stuff like this face to face with people because there is less chance for people's assumptions about what is being actually said, to kick in. 

No offense taken and hopefully none given...I come to this board to share ideas, certainly not to alienate.

[dwcrawford]

I don't see anything to be offended or to offend about on this thread.  It is semantics.  The comment below (or above) by aharris pretty well sums it  up i'd say.  The real question is and discussion should be about "What the heck is in Spam  anyway?" and would eating it on a daily basis actually shorten your life span?  And is it ok just on holidays (you know everything in moderation)?

[Rerun]

Just like any situation in life, it is a matter of perspective.  If you are 3 years old and fall off your bike and rip your knee open it may be the worst thing that has ever happened to you.  Compare this to a 3 year old who has struggled to breath or been diabetic or been on dialysis his/her whole life.  Their perspectie on pain and suffering is much different.

For those of you new to dialysis you have a different view of dialysis.  I remember being thankful that I didn't throw up every day anymore and had enough energy to get out of bed.  Yes, dialysis was new and I felt (at that time 22 years ago) that it was a treatment and I'd probably get better and a transplant would return me to my normal life of a 24 year old.  WRONG-OOO

I think.... I know, the longer you are on dialysis and the more fistulagrams and the more Explanations of Benefits and the more screw-ups you live through on dialysis the more cynical you get.  You get to the day where you start wondering if it is all worth it.  The cost the greed the suffering. 

I can't type anymore because once I fill up the white space it starts jumping all over.  Also my puppy insists on being in my arms when I'm on the computer.

Yes, dialysis is life support and a very expensive one.  My sister would say coffee is life support as there is nothing else wrong with her.

                                 

[dwcrawford]

Omg, Rerun, I trully understand what you just wrote.  I get frustrated now with only a few months behind me (albeit,  quite an advanced age to have to start).  The "5 year life expectancy" doesn't really phase me.  At 69, I'm already older than anyone  ever in my family so the genes aren't on my side.  Heath care is and was. however. 

I do  care about your situation and others.  What a rough road it has been for you!  Please understand that when I do "tongue in  cheek"  comments or sillly comebacks it is just my belief that even a small  amount of  levity (possible anyway) will make a slight difference  in the lives of people who are suffering from this  horrible situation.  Hey..  including myself.

I'll say it once and for all right now but never again:  I hate dialysis, but I fear a transplant more.

[Rerun]

Omg, Rerun, I trully understand what you just wrote. 

No way!  I want this gold plated!   

[dwcrawford]

Hehe... miracles do happen in the strangest places.   

[aharris2]

Rerun says cost - expensive, but there's that benefit - the puppy in the arms 
and DW!!! Rerun, you touched DW! 

Only you can say if it was worth it.
 

[girliekick]

no offence taken, and i am very pleased none was given!!!
Face to face is always better.
Girl

[RichardMEL]

A few years ago there was going to be a statewide nurses strike.

I was at dialysis and I asked one of the senior nurses how that would affect us and he said to me that there was a rule that dialysis nurses could not(or would not) strike because it is considered an essential life support service.

When you think  about it that's absolutely correct. Without dialysis service we'd all die in varying amounts of time. This is not elective. This is something we need to live.

Now I realise that "life support" to most gives you visions of a ventilator and being hooked up 24/7 to machines keeping bodily functions going. I also know that when my time comes I do not want to be kept propped up by such machines just to lie in a bed with no quality of life. I'd rather pull the plug and move on.

This is why I see Dialysis as different. At least with D it's absolutely life support, but it also allows us to HAVE a life.. and I mean a real life. Get out there and do stuff. Work, play, etc.... It's not like being chained to a bed with a ventilator for company with no quality of life.

So to me, technically it IS life support and essential to me, but it supports my life, rather than keeps me going(and that's it).

[cariad]

In all honesty, I don't understand why this is such a central issue when discussing dialysis. It seems to come up quite often. Yes, I understand these definitions matter in the legal world, but for those of us just living our day to day lives, I guess I don't get why the semantics of it are so distracting.

i see you too ignore the big blue gorilla in the corner of the room. i'll say it again, he has a right to be there as long as he cleans up his own messes.

Hmmmm, grammalady, though this image made me smile, I'm not sure how it applies to what I said. If anything, I thought I was trying to call the gorilla out into the light and ask it to explain itself.

I see that Karol referred to a transplant as 'life support'. I don't see it that way, but it doesn't bother me that she does. It doesn't mean I re-examine my whole life and think "This whole time I've been on life support! What a waste!" This seems to be a huge mental barrier that has some people rejecting dialysis out of hand. Perhaps if they weren't thinking "dialysis is more than dialysis, it's really this other incredibly spooky, taboo thing" they could save their energy for the battle with renal failure. When people make life and death decisions based primarily on the use of a term, I find that a bit baffling and I want to understand why. I think jbeany and others pinpointed the problem with the image that life support means you are totally incapacitated, vegetative, no hope, and a burden on society. Maybe dialysis is life support, but life support does not always mean what you think it means? Then we're back to wondering why label it something else at all.

I do love linguistics, but for whatever reason, this life support issue is simply not compelling to me. I am grateful that it doesn't have me wringing my hands, and that I seem to just view dialysis as dialysis.

[okarol]

At first the idea was shocking to me, that Jenna would die without dialysis or transplant. But when I finally accepted that idea the next thing to do was to get her the best care possible.
I don't see the term "life support" as being a negative term, so the time spent using some artificial means or borrowed organ to stay alive is certainly NOT wasted.
Either way, this thread is entitled "Life Support or Treatment - What do you call it?" - so it really is whatever you're comfortable calling it.

Here's one doctor's list:

The treatments of life support include:

    * oxygen
    * intravenous fluids with sugar and basic salts
    * drugs to improve circulation and other body functions
    * antibiotics
    * transfusions
    * surgery
    * nutritional supplements by vein or stomach tube
    * tubes in body cavities (chest or abdomen) to relieve fluid buildup
    * dialysis
    * pacemaker
    * electrical defibrillation
    * various machines to assist heart or lung function
    * transplantation of organs or mechanical substitutes (artificial heart)
    * sedation or even temporary paralysis to enable the patient to tolerate these procedures

— Isaac R. Berniker
http://www.healthline.com/galecontent/life-support

[peleroja]

Bottom line, without the dialysis you would die, ergo "life support."

[cdwbrooklyn]

cdw - i assume this thread was posted bc of something i said in a different post. If so I hoped i better explained myself. Either way if u want to talk about the subject more you can always pm me.

Girliekick, sorry to take long to respond, however, I've posted this topic because I've never heard the term life support for dialysis.  It kind of disturbed me.   I've been on dialysis for almost 11 years; and, I've never heard any doctor, nurse, or technician use the term life support so it took me by surprise.  Although, I don't see dialysis as life support, and never will, I can understand why some may see it as life support.  It was a question that came to mind and I wanted to see if I was the only person on IHD that saw it that way.  It has nothing to do with what you posted.  I've seen it on several difference posts and wanted to clarify the definition of life support vs. dialysis.  As time goes on, I will post things that may come to mind and see what others on IHD feel about it.  It has nothing to do with anyone. 

[girliekick]

it was a great post, i think it will be helpful to many in the future.
Girl

[jennyc]

I never thought of it as life support before. I guess it depends upon each persons own perspective. i think for me though the major difference between 'life support' and treatment is that i am able to chose to STOP treatment and end my life should i chose (not that i would). or to change treatment type. to me life support, well when i was on life support there was no choice, i wasn't conscious. Someone else had to make decisions for me. There was no quality of life just existance.

So i can understand why some see D as life support as it technically does sustain life but i chose to see it as treatment.  I can't wait for stemcell therapy to re-grow my own kidney.... cure! yay wouldn't that be awesome. It may seem like a pipe dream but i will hold onto it.