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

Pierrette · May 15, 2009

Not one of us knows until we face the situation.

HelenofOz · May 15, 2009

I know that I could not live as a quad under any circumstances. I also cannot live with dementia. I do not ever want a feeding tube or dialysis. But perhaps I would be wrong, depending on the circumstances. What would you do? How far would you be willing to go to save your life?

Never say never. My father was not going to undergo dialysis if and when the time came til my younger sister announced her first pregnancy at 39. He changed his mind, and has since seen the arrival of my brother's grandchildren as well (not literally I might add), and had great joy with and from these children.

Saying that when my MIL was dying I remember visiting her & thinking somebody stop this now, it's gone on too long. Luckily she passed away 3 nights later, so someone else had thought the same thing.

But right enough, dementia holds no attractions for me, nor being in a position to require a feeding tube.

allnurses Guide · May 15, 2009

You can't know until you're there. I work in a hi-tech, hi-intervention field, and often wonder why people go so far - but everyone of them that I asked afterwards said that they would do it again.

My own mum always said she wouldn't do treatment if she had a terminal illness. Now she has cancer, and although she doesn't look forward to chemo, she is not ready to leave us.

I do think that the medical staff should weigh treatment decisions on risk-benefit with the understanding that "alive" is not always a benefit. Once the patient's decision making ability is gone, and we are just thrashing a body in a bed, I think the time is over for heroic measures.

HonestRN · May 15, 2009

Quality of life is very important to me. I tend to be very active in my life. If I can't do anything other than subsist on machines I don't want that. I don't want to be fed by anybody else beside myself, I don't want to lie in incontinence, I don't want dementia. I don't want to gasp for every breath. I don't want to fear death and fight it to the ugly end. I want to face the end with peace and dignity.

Trauma Columnist · May 15, 2009

Every situation is different. I only hope that I have a knowledgeable and compassionate provider who won't recommend hopeless and invasive procedures.

tencat · May 15, 2009

In my experience in theory people say they don't want to live a certain way, but then when the moment of truth arrives (ie: being put on a ventilator, chemo for stage IV cancer) a vast majority of people go for the intervention offerred. The will to live is very powerful, and it is the rare person who can ignore it and prepare to die.

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. Would I actually kill myself? I don't know. My hospice patients have the means to kill themselves (lots of narcotics in the home) but I think I've only had a couple that might have done it, but I don't know for sure. The vast majority finish the journey when it's time.

Aneroo, LPN · May 15, 2009

Every situation is different. I only hope that I have a knowledgeable and compassionate provider who won't recommend hopeless and invasive procedures.

I agree.

My husband and I have spoken at length about our wishes. We're both nurses, so we've seen family that has held on too long to the person who should have been let two shifts ago. If we've been on life support without improvement for a few days, donate our organs then pull the plug. We have not discussed care for our daughter- it's heartbreaking to think about that, and I'm sure I'd be totally irrational is something did happen to her.

My parents used to be against my wishes, and am glad I'm married now so someone will respect them. 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.

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

I have always sworn that I am going to get DNR tattoed across my chest, No feeding tubes tattoed across my stomach and No Enemas across my butt! :)

Seriously - if I can take food orally and enjoy it, then let me go. I think Feeding Tubes are terrible if there is no hope of regaining the ability to eat.

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.

This? Makes me very sad. This poor girl can live a very long time like this. It must be hell. I hope God is keeping a really nice place in Heaven for her.

April, RN, BSN, RN · May 15, 2009

I think sometimes it's hope that leads people to choose life sustaining interventions. Patients and more so families think the ventilator, tube feed, VAD, dialysis, will just be temporary and their loved one will get better. What kills me is when they are given false hope by their providers.

I don't want to live as a quad or with dementia or other severe cognitive impairment. I don't want to be put through a battery of tests, procedures, or surgeries if I have end stage cancer. Basically, if I have no chance at ever being able to live a relatively normal life, then I don't want to be kept alive. As nurses, we see patients being "tortured" by being kept alive artificially and swear we would never do that to our loved ones. I know I've said that before, but if it were my family member as the patient, making that decision probably wouldn't be so cut and dry and easy to make.

Jules A, MSN · May 15, 2009

I've had an advanced directive for DNR, DNI, no food or hydration since I was in my early 20s. As others have said we are only refereeing from the cheap seats until the time actually comes. The good news is that since I have those directives in place I figure I won't be making the actual decision at the time so I can't second guess it and my family knows I'd come back from the grave and snatch them bald if they don't let me go when its time. As for advanced cancer treatment I don't know but unless its a cut it out/zap it off type thing I can't say I'm in favor of fighting when its futile like I have seen some do. :sniff:

Aneroo, LPN · May 15, 2009

I have always sworn that I am going to get DNR tattoed across my chest, No feeding tubes tattoed across my stomach and No Enemas across my butt! :)
Seriously - if I can take food orally and enjoy it, then let me go. I think Feeding Tubes are terrible if there is no hope of regaining the ability to eat.
This? Makes me very sad. This poor girl can live a very long time like this. It must be hell. I hope God is keeping a really nice place in Heaven for her.

I've joked about getting the tattoo also- if only it were a legal document! :lol2:

It seems awful to say, but I do wish she would have went ahead and passed when it happened. She has no quality of life now. My grandmother goes and sits with her for hours a day (my cousin hates this and usually acts up during that time and needs to be medicated). Had her ICP gone up just a little more, she would have been an organ donor instead. I've explained to my mom that I doubt my cousin will live another ten years- I think pneumonia will get her. She was a smoker, think she had a hx of asthma, and is high aspiration risk.