Why some people shouldn't be allowed to make "End of Life" Decisions

[Ice Queen (1)]

I don't think it's a secret I work in the medical field. More specifically, I am a nurse in CCU (ICU with cardiac emphasis). All the patients I take care of are critically ill. Many have no real hope of recovery. An issue that comes up all too often is end of life decisions families aren't prepared to make. What ends up happening is we prolong the dying process, or stabilize them to "live" in a pretty much vegetative state while still very sick, because families can't let go, and the technology exists to keep them alive.

Here are some recent scenarios that just left me angry and frustrated:

An man near 90 years old, previous medical history includes severe dementia and a stroke that left him unresponsive. Before his latest bout of significant illness, his only abilities consisted of opening his eyes and clenching his mouth. He has a trach and a feeding tube, and was in a nursing home. Due to immobility, his joints are severely contracted to a point you cannot force his limbs to straighten. The man has bedsores to the bone on his elbow and both feet. There is no heels left on this man. His tissue is dying sloughing off, toes look ready to snap off. He came to us because he has a bad pneumonia and overwhelming infection. This man will never get off the ventilator, his wounds will never heal, he can not even be tube fed a this point because his body just is not functioning. he relies on IV nutrition. The family wants everything done possible to keep him alive. This man cardiac arrested, and we had to bring him back, legally, and unfortunately, are good at our jobs.

A woman, over 90 years old, severe Alzheimer's, did not know who she was or what anything was, for that matter. She had been mobile, broke her hip, had surgery for it, then ended up having a heart attack. This woman only spoke gibberish and screamed. There was nothing you could do to soothe her. We had to keep her restrained to keep her from pulling things out and trying to get out of bed. Her blood pressure was unstable, her kidneys stopped working, she would never walk again, even if we fixed the other stuff. Again, family wanted everything done to keep her alive. So, we had to put her on IV drips to maintain a blood pressure, and one to help her heart contract better, and they were considering dialysis and a heart cath, but I am not sure what happened with that.

A man around 80, had no family to contact, had been living on the streets and motels. He came to us with a heart attack, severe infections including in the lungs, unable to maintain an adequate blood pressure, and a very weak heart. This was a little different. There was no family to tell us we could stop, so we just kept going and keeping this man alive. Every time he would try to die, we would do something to , at least temporarily, keep him from doing so. Finally the ethics committee and Dr's and lawyers got together and we were able to stop and let him go peacefully. His condition was terminal, we had been only prolonging the inevitable.

To me, this seems like cruel and unusual punishment. We treat our animals with more dignity. But then, there are differing points of view. What's yours?

The moral of my stories; Put your end of life wishes in writing! You never know what could happen. If your loved one is diagnosed with a serious ailment, even though you don't want to think about them dying or depress them, ask them, while they are still able to make rational decisions what their desires are. It will make it easier on you and them if the time ever comes those decisions need to be made.

[Guest Megalicious]

That pretty much sums up how I feel as well. I'm so sorry you have to sit there and watch it....

[Ice Queen (1)]

That pretty much sums up how I feel as well. I'm so sorry you have to sit there and watch it....

Worse, I have to participate. If I notice my patient is crashing, it is my job to take every measure to keep them alive. And I have. Some days I almost wish I wasn't so good at my job. I have also been a strong advocate with social work, Dr's, ethic committee members, and families, to try and help the situation.

Thanks, hun

[Oh_My_Goth]

People are sick.....

[Msterbeau]

I agree very much. Just because we CAN prolong life, doesn't mean we should.

[TygerLili]

I don't get it. It seems like it would be infinitely more difficult and painful to watch someone you care about in such a state day after day than to just let go of them. I guess a lot of people just can't look at it rationally when they're that close to the situation, though.

[Guest Megalicious]

I don't get it. It seems like it would be infinitely more difficult and painful to watch someone you care about in such a state day after day than to just let go of them. I guess a lot of people just can't look at it rationally when they're that close to the situation, though.

I think to many people are worried about the guilt they MAY feel, as a pose to the guilt they feeling siting and watching this person they love die.

I just don't understand, people have fucked up ways of justifying their feelings.

But you have a good point TL, most people are so emotional invested, they can't look at the situation objectively and leads them make choices in an emotional mind set, which in my case ( I can not speak for anyone else) is ALWAYS a bad thing.

[Ice Queen (1)]

I don't get it. It seems like it would be infinitely more difficult and painful to watch someone you care about in such a state day after day than to just let go of them. I guess a lot of people just can't look at it rationally when they're that close to the situation, though.

It is much easier when it is not someone you love. I said out loud to a colleague, " I wonder if I would be able to say enough, if it was my loved one?" They assured me I would be able to. They were faced with a similar experience after having worked CCU many years. They let their loved one go and have had no bad feelings about the decision they made. I think it gave them some peace knowing what they were sparing them. But, yes, it would be hard to be rationale when it is your loved one. I try to be sympathetic to them having the burden of having to make such decisions. I don't want to feel like I have forced them into a decision they are not ready to make and will feel guilty about. I try to educate them, so they will not feel guilty.

[StormKnight (1)]

I have seen this as well, it is very little secret that I am in the medical field as well. I have personally ordered terminal extubations, had the family talks about withdrawal of care, ordered the morphine drips with the order "titrate to comfort." I have admitted traumas that were organ donors by week's end, doing both the admission and the procurment. I have even delcared these people as deceased legally (last count was 7 certificates I had to fill out.) When I do discuss these matters, I try to lay as many as the cards on the table as I can, tell the family what can be tried, what has been tried, and the level of suffering the patient has, hopefully in a language that is simple but not condencending. It is not easy, and it *never* gets easier, and it does wear on you after a while. Most of the times, (fortunately,) the family was receptive, and working in a small program, I was able to give them more support than the average city hospital.

Despite telling the family that it is hopeless, they still want a full code for their family member. For some, it is the need to hold on to that family member, that the fear of losing what they think is the pillar of their family. There has been family infighting as well over the matter. In the feud, we have to go with the full code until a consensus is reached. All I can do legally is document that I have discussed comfort care issues, explained all the good, bad, and ugly of the situation, my reccomendations, and the family decisions. Then we do what is in our ability to do.

For me, if I am as disabled as some of these examples, give me some Versed and a Dilaudid PCA without a lockout on it. Let me die with some dignity.

One that gets me are the wards of the state. There are some of these people in state institutions that are by default full code. I can understand their point of view, as they could be seen as state-sponsored murders, but some we look at and shrug our shoulders that we can do nothing for them. I don't even want to think of the legalese.

A lot of people don't understand that there are limits to the body and to medical ability. Most people, let's face it, get their medical information from TV, popular media, sensationalistic stories, that that one in 100,000 chance that recovery will happen to their family member (disgusts me to the point I can not even watch medical comedies anymore.) Not every medical story has a happy ending.

[Rev.Reverence]

Death is not the end... it is but one step in the continued journey of the Soul... it is necessary, & inevitable...

To prolong it in such a manner does seem to me to be; a "fucked up" way to "thank ones Elders"; but most people are not hip to the Reason behind the 'Tibetan Book of the Dead'...

The people who give these orders; are selfish.They do not want to let their Loved ones go; so much that they are willing to cause undue amounts of pain. They need to grow from the Sorrow; not bow under it's weight.

I am sure that there is little harm in resuscitation from the standpoint of a 'younger person', or ONCE in the case of the 'Elderly'; but at a certain point, when a person gets very close to the end of this life; they 'SEE' the Point; they know the way. One must think; how would it FEEL to be in pain; to think "THIS IS IT... I'M NOT GONNA' WAKE UP AGAIN", and then wake up on a gurney bed in PAIN...AGAIN!

While I have NO proof; I do really think that this practice is damaging in some ways to the Soul.

[Rayne]

((((((((hugs))))))))

My mother had her first heart attack and double bypass at 40. She had an aortic valve replacement in 2006, She was 52. She's 54 and has had her chest cracked open twice. The last surgery was hell for her. She has made her wishes very clear to me and we just got everything in writing and filed with her doctors. She doesn't want to suffer and I don't think she should have to if she doesn't wish to.

[pomba gira]

I don't get it. It seems like it would be infinitely more difficult and painful to watch someone you care about in such a state day after day than to just let go of them. I guess a lot of people just can't look at it rationally when they're that close to the situation, though.

That's why it's so important to have the legalities taken care of... make sure you have the advance directive thing in place. You can't know with certainty what your family will do, even if you've made your wishes clear to them. Because even sensible people can lose all rationality in this situation.

It especially bothers me when people who supposedly follow religions that believe in an afterlife won't let loved ones die peacefully. Come on, you either believe what you claim to... or you don't. But our society has a deeply unhealthy attitude toward death... where it's seen as almost unnatural.

Personally I can think of quite a few "fates worse than death"... and lingering for weeks or months as a mindless, pain-wracked husk and a burden to my loved ones is up near the top of the list.

[Enishi]

I think there comes a time when one needs to let go and move onto the next existence. I see this as well since I also work at a hospital, and it disgusts me.

[Rev.Reverence]

That's why it's so important to have the legalities taken care of... make sure you have the advance directive thing in place. You can't know with certainty what your family will do, even if you've made your wishes clear to them. Because even sensible people can lose all rationality in this situation.

It especially bothers me when people who supposedly follow religions that believe in an afterlife won't let loved ones die peacefully. Come on, you either believe what you claim to... or you don't. But our society has a deeply unhealthy attitude toward death... where it's seen as almost unnatural.

Personally I can think of quite a few "fates worse than death"... and lingering for weeks or months as a mindless, pain-wracked husk and a burden to my loved ones is up near the top of the list.

I even forgot to say "hypocrites" in addition to "selfish"... thanx for reminding me pomba gira...

I wonder if anybody knows any info on how to make ones wishes perfectly clear...

[pomba gira]

I even forgot to say "hypocrites" in addition to "selfish"... thanx for reminding me pomba gira...

I wonder if anybody knows any info on how to make ones wishes perfectly clear...

Information on advance directives from the American Academy of Family Doctors. Assigning durable power of attorney is not a bad idea either... especially if you aren't married to your significant other and think they are more likely to follow your wishes than your family.

[Hellion]

We had a a very well respected relative go through this,its really beyond stressful,and disrespectful to the person themselves

and IMO suffering is worse than dying.

Government also needs to stay out of these issues too

This is a footnote from a song from one of my CDs

We all have sympathy for those left to care and despair for victims of tragedy but what of the victim himself - trapped inside his body a coffin - unable to move a muscle or blink an eye but aware of the living hell he's enduring and unable to bring it to an end - a man not even a former shadow of his former self - a man who wants to be remembered for what he was - not forgotten for what he has become'.

[TitsMcGee]

After the Terry Shivro fiasco in FL I made a living will. I trust my family wouldn't let it go on that long, but I wanted to make it legal saying I don't want it to go on that long if something happend.

My grandfather lived with us the last 10 years of his life or so, and I think the last 3 he was under hospice care. He didn't want to die in a hospital, he wanted to do it at home. It was hard to watch him go down hill, but we knew well enough that he was ready to go.

[Nienna]

When I started having my health problems in my early 20s I filed a living will... with a DNR order. If I die, I'm dead. I really don't want to suffer if there's no point. I sincerely hope thta when my parents go, my brothers will listen to me for their sakes too.

[Draco1958]

I went through this a couple years ago with my mom. She was in a nursing home and had a bunch of problems happen close together near the end. I signed a NRO with the nursing home and each time she went into the hospital, I had to sign another one. I knew she didn't want to suffer and as much as I wanted her around, I knew it was what would be best for her. Do I regret it? Sometimes yes only because I miss her but I know in my heart it was what was best for her overall. She's at peace and watching over me.

[Ice Queen (1)]

I have seen this as well, it is very little secret that I am in the medical field as well. I have personally ordered terminal extubations, had the family talks about withdrawal of care, ordered the morphine drips with the order "titrate to comfort." I have admitted traumas that were organ donors by week's end, doing both the admission and the procurment. I have even delcared these people as deceased legally (last count was 7 certificates I had to fill out.) When I do discuss these matters, I try to lay as many as the cards on the table as I can, tell the family what can be tried, what has been tried, and the level of suffering the patient has, hopefully in a language that is simple but not condencending. It is not easy, and it *never* gets easier, and it does wear on you after a while. Most of the times, (fortunately,) the family was receptive, and working in a small program, I was able to give them more support than the average city hospital.

Despite telling the family that it is hopeless, they still want a full code for their family member. For some, it is the need to hold on to that family member, that the fear of losing what they think is the pillar of their family. There has been family infighting as well over the matter. In the feud, we have to go with the full code until a consensus is reached. All I can do legally is document that I have discussed comfort care issues, explained all the good, bad, and ugly of the situation, my reccomendations, and the family decisions. Then we do what is in our ability to do.

For me, if I am as disabled as some of these examples, give me some Versed and a Dilaudid PCA without a lockout on it. Let me die with some dignity.

One that gets me are the wards of the state. There are some of these people in state institutions that are by default full code. I can understand their point of view, as they could be seen as state-sponsored murders, but some we look at and shrug our shoulders that we can do nothing for them. I don't even want to think of the legalese.

A lot of people don't understand that there are limits to the body and to medical ability. Most people, let's face it, get their medical information from TV, popular media, sensationalistic stories, that that one in 100,000 chance that recovery will happen to their family member (disgusts me to the point I can not even watch medical comedies anymore.) Not every medical story has a happy ending.

It's nice to hear when Doctors take the time to explain things to family. It really helps hearing it from the doctors what nursing, social work, and case management have been saying. It seems to validate the information for the family. From what I have seen, they have a need to hear it from the doctors as well. This is often a sticking point for us, unfortunately. The docs are so busy and never come through the unit at the same time, family may not be there when they come through. We try to set up family meetings with the docs, social work, and case management if timing is an issue. But even then, some take more time, some do a better job at explaining. Sometimes it is in the phrasing. No one wants to be the one to tell family that kind of news. I know I don't. I am learning to phrase things differently and trying to be more blunt, but without coming off as uncaring.

Thanks for the support and willingness to admit the extremely poor prognosis. There are some Docs that are a little unreasonable when it comes to this.

Information on advance directives from the American Academy of Family Doctors. Assigning durable power of attorney is not a bad idea either... especially if you aren't married to your significant other and think they are more likely to follow your wishes than your family.

Thanks for putting that up, Pomba Gira! I actually got one to fill out from the local library, but am not sure how many libraries carry that kind of stuff.

Thanks to everyone who has shared a personal story so far. It is not easy, in any situation and take quite a bit of strength. Hearing from others that have gone through it, may help another find the strength someday.

(wow, I am actually posting about something other then sex. Shhh! Don't tell anyone. I don't want to ruin my reputation )

[Troy Spiral (13)]

I have fairly unpopular opinions about what most would consider (at best) "aggressive" use of things like DNR that i tend to keep to myself. Examples like above situations are particularly close to home. Our near-psychotic fear of the final act, and selfishness about our own loss, regardless of the horrible quality of life is extremely frustrating.

[Ice Queen (1)]

For people that do not know, there are different levels of care. It is not "do everything" or "pull the plug"

The particular cases I mentioned were "do everything". That means, when the heart tries to stop working, we give meds, do CPR (proper chest compressions are very traumatic to the body), shock them over and over, intubate (putting a breathing tube down someones throat and putting on a ventilator) if not already on a ventilator, etc., give them fluids and/or meds to keep their blood pressure from dropping too low

The next step down form that is to do everything but chest compressions with or without ventilator support. (Saving them the trauma in the last moments of their life)

Another step down is very individualized. It means we will treat them medically and keep them comfortable, but since their condition is terminal, we will not use aggressive measures such as CPR or putting on a ventilator if not on one already. Then the patient and family chooses if they would want things like dialysis, a pacemaker, surgery, cardioversion, antibiotics, blood pressure support, there's more, but without seeing a list....

The next step is comfort measures only

the final step is terminal wean. This is when life supporting medications and mechanical ventilation are stopped, while the patient is medicated for comfort.

To clarify (just in case): I am by no means implying that people should decide to terminal wean their loved ones. The first patient I described cardiac arrested. CPR was done, pt was shocked, meds given, he came back. It just begs the question, why? For me at least. I understand not doing a terminal wean, but I do not understand wanting to bring him back in that manner when he is trying to die and he will never get better. He will only continue to worsen until he codes again, and we will do CPR and all that again, over and over and over, until we can't get him back anymore.

[Troy Spiral (13)]

For people that do not know, there are different levels of care. It is not "do everything" or "pull the plug"

The particular cases I mentioned were "do everything". That means, when the heart tries to stop working, we give meds, do CPR (proper chest compressions are very traumatic to the body), shock them over and over, intubate (putting a breathing tube down someones throat and putting on a ventilator) if not already on a ventilator, etc., give them fluids and/or meds to keep their blood pressure from dropping too low

The next step down form that is to do everything but chest compressions with or without ventilator support. (Saving them the trauma in the last moments of their life)

Another step down is very individualized. It means we will treat them medically and keep them comfortable, but since their condition is terminal, we will not use aggressive measures such as CPR or putting on a ventilator if not on one already. Then the patient and family chooses if they would want things like dialysis, a pacemaker, surgery, cardioversion, antibiotics, blood pressure support, there's more, but without seeing a list....

The next step is comfort measures only

the final step is terminal wean. This is when life supporting medications and mechanical ventilation are stopped, while the patient is medicated for comfort.

To clarify (just in case): I am by no means implying that people should decide to terminal wean their loved ones. The first patient I described cardiac arrested. CPR was done, pt was shocked, meds given, he came back. It just begs the question, why? For me at least. I understand not doing a terminal wean, but I do not understand wanting to bring him back in that manner when he is trying to die and he will never get better. He will only continue to worsen until he codes again, and we will do CPR and all that again, over and over and over, until we can't get him back anymore.

Interesting information. Had to look up what "Chest Compression" meant, its obvious to me now. Pretty sad since I've had first-aid and various medical courses. Not sure how I don't ever remember hearing that specific term in class. Brain damage probably.