Quality of life: How far would you go to save your life.

Long Term Care Columnist / Guide · May 15, 2009

I agree that no one can really know what he or she would do in a life-threatening situation until it happens..........however, I've prepared for it as much as possible by having a copy of my signed DNR order on my refrigerator, with more copies on file at the hospital and my doctor's office. (I learned that trick when I was working in assisted living.....residents had POLST forms on their fridges so that staff and/or EMS would know what to do if they found somebody down.) I'm all for full treatment if there's a possibility of recovery; but if I'm down and have no vital signs, I will have gone HOME....... and I'd be madder than a wet cat if I were to be forcibly brought back here!!

That said, I believe I would refuse chemotherapy in the event of cancer. I've seen too much of the havoc it's wrought on patients as well as several of my family members, and I wouldn't want to buy an extra six months or a year of life if it meant throwing up and feeling like crap all of the time. Life is very precious and I want to enjoy it as long as I possibly can, but I also want to go out with dignity---I don't want to be a burden on my family or on society, and I don't want to sacrifice quality for quantity.

Of course, that could all go right down the tubes if I were to receive such a diagnosis---who knows, I might turn completely around and start clawing and scratching for every bit of time I could possibly get. We never know for sure, do we?

ShayRN · May 15, 2009

I agree.
But my cousin was nearly killed just over a year ago with a CHI/TBI. She is in a nursing home now, feeding tube, incontinent, and can groan and yell. Her means of communication is yelling or pulling out her peg tube (which I suspect is her way of telling people to let her go). She's 26. I think my parents have changed their views after seeing that, and they understand my reasoning a little more. I don't want to be stuck in my own body, possibly with totally normal thoughts that I am unable to communicate to the outside world.

The same thing happened to my cousin. She was 19 and had TBI. She has come back enough to live a fairly normal life, although her short-term memory is nonexistant. Every doctor but one wanted to "give up" on her. My mom uses this as ammo everytime I bring up not being kept alive in case of a TBI. Therefore I have a living will with my husband and best friend as the decision makers. They both know I feel very, very strongly that I am to be let die. I am NOT afraid to die, I am afraid of living incontinent with a peg and multiple bed sores. As far as cancer, it would depend. If it was a treatable cancer that would allow me to live another 5-10 years, yes I would do it. If it was something like pancreatic or liver, nope. Give me pain control and let me die with dignity.

nerdtonurse?, BSN, RN · May 15, 2009

I had an anaphylactic reaction to codeine after what was supposed to be a routine dental surgery, and ended up intubated in the ICU. I will PROMISE you, I have threatened to come back and haunt any family member who ever makes me go thru that again. I remember using my diaphram, trying to pull air into my lungs, and no air coming in at all. Apparently, if they gave me Diprovan, they didn't give me enough, because I remember everything.

I've also had the horror of looking after patients who were "locked in" -- they were there, mentally, they just had no way of interacting with their environment, even with the yes/no hand squeezes. You could see the intelligence, the panic, and the horror in their eyes.

No vent. No peg. And in the event of brain damage/lock in, no IV anything except Adivan. Just let me go.

Pepper The Cat, BSN, RN · May 15, 2009

I've also had the horror of looking after patients who were "locked in" -- they were there, mentally, they just had no way of interacting with their environment, even with the yes/no hand squeezes. You could see the intelligence, the panic, and the horror in their eyes.

This is my worst nightmare, Being aware of everything, yet unable to control your environment or communicate.

Slight highjack here - I remember working one day in LTC. We were doing out work, getting pts washed, up etc. Another nurse and I were "buddying" to get our work done easier. She finished one pt, while I moved on to the next where she joined me. She said "I put D in the day room and put Regis and Kathy on, so she should be happy. That's a great show". I replied that if anyone did that to me, they'd find me somehow throwing myself out of the broda and dragging myself out of the lounge to get away from that show! Thats when we really reallized how much control we nurses have over our pts who cannot communicate. WE decide the radio station , WE decide the TV channel. WE decide when to turn, reposition, etc. WE decided what they will wear.

That's when I decided that having no control over your environmnet must be Hell on Earth and I pray to God that it never happens to me.

diane227, LPN, RN · May 16, 2009

You know, when my mother had lung cancer I expected that she would not want anything done and would just come home to die. But she did not. She went through chemo and radiation. She did however make her funeral arrangements. It was so strange. We were driving home from one of her radiation sessions and went by the cemetary where my father was burried. She wanted to stop that day and make her arrangements. It was so strange going into the room to choose a coffin. It just seemed strange to be making these decisions while she was alive. We found ourselves laughing and joking about some of the coffins. She developed brain mets and I took her home to die. She just went to sleep. The will to live is like someone else said, a very strong drive. I guess that some of us don't know what we would do until the time came. If I can't make decisions for myself I want to go.

leslie :-D · May 16, 2009

i think it's important to keep in mind, that the will to live is a visceral response.

'survival' is instinctive.

regardless of what our intellectual thoughts may be, when our time comes, it's completely natural to fight for our lives.

it is only when our minds become exhausted or submissive, that we can start to accept our mortality.

i used to insist that i would refuse x, y and z, even at the cost of life.

not anymore, because i see on a daily basis, how the mind works when facing death.

even in hospice.

most folks don't even consider hospice services until every conceivable avenue has been totally exhausted.

interesting question though, di...

as are the responses.

leslie

mama_d, BSN, RN · May 16, 2009

My hubby and closest sister (along with friends at work that I've had this discussion with) know that if it comes to the point where no realistic expectation of improvement is expected, if I can no longer recognize my children/husband or have the mental capacity to have a spirited debate with my husband about a work of literature, it's time to let me go.

Unfortunately, my hubby is a "damn the torpedoes and full speed ahead" kind of person when it comes to code status, so I know he'll keep me around for longer than I'd like. But that's okay, b/c he knows that, as he puts it, I'll "kill him before he's ready". It's a macabre kind of compromise, but that's what spouses are for

blue note · May 18, 2009

That said, in theory I would consider ending my own life if faced with alzheimers or stage III/IV cancer, or certain types of cancer such as pancreatic or liver cancer, since there is such a low rate of survival.

Also, as this article relates, pancreatic cancer is agonizingly painful towards the end. No way would I want to suffer like that.

Near the end, Steve and Ginny could hardly stand to be in the house because his father was in so much pain. By the time the doctor said his medication should be increased despite the nurses' concerns, it was too late.
"He was just moaning and screaming, and it got really bad on Friday," Ginny said. "By Monday when we left, he was just screaming at the top of his lungs."
Wallace was dead two days later. An autopsy revealed that the cancer had consumed his pancreas, liver and parts of both kidneys and lungs.

Mommy_of_3_in_AL..RN · May 18, 2009

I think this is one of my favorite topics of discussion..but i will agree that there are no clear cut answers. Technically, the way i have things set, it all depends on the physician. Basically, in case of an accident or sudden illness, and i am not able to make my own choice at that time, and if there is no hope for recovery (meaningful recoery at that)..let me go. I dont want to lie in my own waste, rotting away and have my children remember me in that way (regardless of my age..whether sooner or later in life). If i receive a diagnosis that is bad news, i will weigh my options myself and make a choice at that time. I will agree to being vented, tubed or whatever for a short time, to give my body a chance to recover, only if there is a distinct probability of full recovery. Dont stick a tube in me if there is a 5% chance i will be ok...let me go. i KNOW miracles happen, and people that are expected to die live, but i dontwant to be the experiment. I dont want to lie there and be able to see and hear, without the ability to communicate.It tears my soul up when i have a patient, young or old, that has a very poor prognosis, that is vented but awake and fully in their right ming, yet hears and understands what is being said at the bedside, and they call me in there and try to tell me something...i give them paper to try to express their thoughts, and 99% of the time, they write plainly to let them die, but noone will pay attention. I have only been on the unit for 8 weeks, yet this has happened on three occasions with my patients, and at least twice with other patients. Of the three i had, one was finally terminally weaned, and the other two passed away in a very ugly manner because they were full codes. That is three in 8 weeks that expressed their wishes to die, but noone listened and they were coded with less than desireable outcomes. maybe i am just on a bad streak...

so that was a ramble...sorry...anyway my issue now is that, although my husband is aware of my wishes, he isnt that knowledgeble with medical stuff, and i dont know that he can or will follow my wishes the way i would want. Would it be wrong to have my decision maker legally changed to my mom (who is a nurse) or my brother (a paramedic)?? Can you even do that, and how would you suggest approaching that with my family??

Roy Fokker, BSN, RN · May 18, 2009

For all I know, I could be hit by a bus on the way to work tomorrow, so what's the point in making plans? (and speaking as someone who has been T-boned by a bus while riding a motorcycle, it is not a pleasant experience I tell you!)

When I was a cadet, a sergeant once told me "There ain't such a thing as a 'good death'. There ain't an easy way or a smart way. It's never the right time, it never gets any easier and it never makes any sense".

I've been trying to get my parents to put their thoughts in writing but they keep putting it off. I love my parents and don't relish the thought of them passing on... but I keep telling them that I've seen it happen way too often at work. When the "moment" happens, few are in the right state of mind to make such monumental decisions. That's why it is SO important to have living wills - that way there is no doubt about intent and desire.

As for me?

There is a difference between "life" and "living". I'm more "pro-living" than "pro-life".

cheers,

azhiker96, BSN, RN · May 18, 2009

I have an advanced directive and my MPOA both knows and agrees with my wishes. She's a hospice nurse too so she believes in quality over quantity. Also, she knows I'll come back to haunt her if I end up with a PEG on a vent.

I am here to participate in life, not just process food and fluids.

newohiorn, BSN, RN, EMT-P · May 18, 2009

As others have said I would not want to survive a bad TBI where I would end up locked in (as someone else said--sounds like hell on earth) or where I end up like the other poster's family member and can only moan and yell, etc. If I can't move on my own and at least mostly take care of myself, do some things I enjoy--please, please, please let me die--and please take any and all organs. I have made my wishes very clear to all of my family members and anyone else who will listen. I would be okay with vent and tube feeds if it helped me recover from something but I do not want to end up in a nursing home vented and on tube feeds until I manage to die.

I have also recently become more and more concerned about dementia as I have watched my grandmother and aunts suffer dementia so I presume it is coming for me too. You know how some confused people are still sweet as can be and others are mean as snakes? I am so afraid I'm going to be confused and mean as a snake and I don't want to treat anyone the way I have been treated by these folks. I told my husband to smother me if I become mean...of course I might find myself being smothered sooner than I think.