Quality of Life

[alan1]

I have met very few people who I consider have a life experience that would give them the perspective to comment on another human's quality of life/end of life decision, and all of them refuse to judge. I suspect that no one with the required life experience would feel capable of such judgment.

That said, emergency room staff and others who deal with situations considerably grimmer than the Indiana man sometimes have "last friend" understandings. If you are a party to one, you never EVER talk about it with anyone other than the other party.

There are family members and close friends of mine who have endured medical challenges more daunting than the gentleman in the news article who have chosen to endure and find their own meaning for continued life. I have been honored to know several who have looked into that dark place and found a courage to meet the despair. In my heart I know that beyond the courage there must be an end to each struggle, and that for each of us and everyone we care about, there is a point we must let go. The end of wisdom is knowing when that is.

Just commenting on the part I put in blue.
If the time comes that one needs to make the decision to end life support or not end it, that is a judgement, either way you go. I've had the unfortunate experience of having to be involved in such a decision for a sister of mine. My sister was diagnosed with leukemia at age 24, with medical treatment she was in and out of remission a few times. Nothing worked permanently and at 27, she was admitted to a hospital that focused on experimental treatment for decidedly terminal cancer cases. She was an active and vibrant young woman. Her passions were surfing, scuba-diving, boating, hiking and camping. The day came that the hospital told us they had exhausted all options to cure her. We (the family) had a decision to make. The hospital could keep her alive for months or even years by keeping her hooked up to a respirator, dialysis, feeding tubes and numerous other medical apparatus......or we could tell them to turn off the machines that were keeping her alive. They told us that if they turned off the machines she would be dead in 24 to 36 hours.

For such a physically active young woman, life supplied by machines was no kind of life. No quality.

As a family, we made the decision to "pull the plug". It was hard.

It was over 20 years ago, but I can still remember it as if it was yesterday. The doctors removed the tubes and wires and gizmos that keep a person alive. I stood at her bedside and I took her hand into mine. I leaned over and gave her a kiss on the cheek. I whispered in her ear, "I love you, but it's time we all let go". She opened her eyes for the first time in over a week and she smiled. She said the last word she would ever speak, "Goodbye".

Four hours later she was dead, not the 24 to 36 hours they told us. I believe she was ready to let go, the only thing holding her here was family. Our willingness to let her go, let her go in peace.

 

[Connery]

I have met very few people who I consider have a life experience that would give them the perspective to comment on another human's quality of life/end of life decision, and all of them refuse to judge. I suspect that no one with the required life experience would feel capable of such judgment.

That said, emergency room staff and others who deal with situations considerably grimmer than the Indiana man sometimes have "last friend" understandings. If you are a party to one, you never EVER talk about it with anyone other than the other party.

There are family members and close friends of mine who have endured medical challenges more daunting than the gentleman in the news article who have chosen to endure and find their own meaning for continued life. I have been honored to know several who have looked into that dark place and found a courage to meet the despair. In my heart I know that beyond the courage there must be an end to each struggle, and that for each of us and everyone we care about, there is a point we must let go. The end of wisdom is knowing when that is.

Just commenting on the part I put in blue.
If the time comes that one needs to make the decision to end life support or not end it, that is a judgement, either way you go. I've had the unfortunate experience of having to be involved in such a decision for a sister of mine. My sister was diagnosed with leukemia at age 24, with medical treatment she was in and out of remission a few times. Nothing worked permanently and at 27, she was admitted to a hospital that focused on experimental treatment for decidedly terminal cancer cases. She was an active and vibrant young woman. Her passions were surfing, scuba-diving, boating, hiking and camping. The day came that the hospital told us they had exhausted all options to cure her. We (the family) had a decision to make. The hospital could keep her alive for months or even years by keeping her hooked up to a respirator, dialysis, feeding tubes and numerous other medical apparatus......or we could tell them to turn off the machines that were keeping her alive. They told us that if they turned off the machines she would be dead in 24 to 36 hours.

For such a physically active young woman, life supplied by machines was no kind of life. No quality.

As a family, we made the decision to "pull the plug". It was hard.

It was over 20 years ago, but I can still remember it as if it was yesterday. The doctors removed the tubes and wires and gizmos that keep a person alive. I stood at her bedside and I took her hand into mine. I leaned over and gave her a kiss on the cheek. I whispered in her ear, "I love you, but it's time we all let go". She opened her eyes for the first time in over a week and she smiled. She said the last word she would ever speak, "Goodbye".

Four hours later she was dead, not the 24 to 36 hours they told us. I believe she was ready to let go, the only thing holding her here was family. Our willingness to let her go, let her go in peace.

I am sorry alan... Thank you very much for sharing this..

 

[AVG-JOE]

I think I wrote this in another thread but -

Craig Rehab Hosp in Colorado requires that all new employees spend 24 hours as a spinal cord injury. That means being in a wheelchair, not using lower extremities and doing all the things one does during a 24 hour period. Shopping, eating out, getting in and out of a public bathroom, elevators and a lot more.

Unless one experiences it, one cannot even begin to understand what that life is like.

Unless one experiences it, one has no right to judge the actions of others.

Nothing like the self-righteous indignation of the clueless, eh?​

 

[BDBoop]

Far as I can see, you have posited no question.

In his shoes, I would do the same: Yes, no or don't know.

how can you expect anyone to answer that question accurately when lifes circumstances can change from minute to minute?

Like - how. You think he was suddenly going to be un-paralyzed?

 

[BDBoop]

I think I wrote this in another thread but -

Craig Rehab Hosp in Colorado requires that all new employees spend 24 hours as a spinal cord injury. That means being in a wheelchair, not using lower extremities and doing all the things one does during a 24 hour period. Shopping, eating out, getting in and out of a public bathroom, elevators and a lot more.

Unless one experiences it, one cannot even begin to understand what that life is like.

Unless one experiences it, one has no right to judge the actions of others.

Nothing like the self-righteous indignation of the clueless, eh?​

He's siding with you?

 

[Katzndogz]

The essential difficulty is that people who pretend to be paralyzed are only pretending. It's like wearing a fat suit for a day ending with "If I were really that fat, I'd starve myself to death". How about sending them to the para olympics or a wheelchair basketball game instead?

This is why Angel of Death nurses get bagged for murder. THEY believe the patient is better off dead, so they kill them. In their defense, it's "If it were ME, I'd rather be dead."

Once a person substitutes their opinion as the facts for someone else's life, persuading them to do the right thing is justified. Families convinced of the righteousness of their position engage with doctors to badger someone else into killing themselves. Then smugly say "It was Grandma's decision all along."

 

[Luddly Neddite]

In his shoes, I would do the same: Yes, no or don't know.

how can you expect anyone to answer that question accurately when lifes circumstances can change from minute to minute?

Like - how. You think he was suddenly going to be un-paralyzed?

Actually, I think he has a point. Or at least it speaks my own belief that life than turn on a dime.

I would like to say I would have the courage to put the needs of my loved ones before my own desire to stay alive. OTOH, I've known people who had NO function and NO sensation below the neck.

A young man who attempted suicide, missed his heart and shattered his spine. Very high functioning.

The beautiful wife of a wealthy sob who was planning suicide and, whit her two daughters in the next room, accidentally fired a pistol and was an instant quad. The rehab facility maintained an apartment house that had very few special amenities so that families could stay there with their CNS injured family member. She came back from her first weekend with her husband with her genitals so bruised and bleeding, it was hard to understand what the bastard had done. Since she could feel no pain, he apparently saw that as permission to repeatedly rape her.

A middle aged man who fell off a foot tall stool and broke his neck.

A young guy who was playing a pillow battle with his brother. The brother threw a pillow from across the room, the kid fell over and broke his neck. He always hated the drug nurse and figured out that if he started hitting his thigh when he heard her coming, by the time she was standing in front of him, his spastic leg would kick her.

Young guys were fearless in their chairs. You would often hear, "what's the worst that can happen to me? A broken neck?" We would go out bar hopping in big w/c vans. They would leave the stop cock on their leg bags open so the urine would dribble out rather than fill their leg bag and cause their blood pressure to spike. One bar had covered their floor with sawdust because it was a favorite haunt for the w/c patients.

One thing that people seldom consider is this - if you go out and come home drunk, its no big deal. You just fall into bed and sleep it off.

For spine injuries, one night of doing that could very easily kill you. Or, you could start a bed sore because you didn't properly pad your body and then didn't move all night. Or, you didn't hook up your pee tube to the bigger bed bag and you stroked out in the night because you bladder was backed up and caused your blood pressure to go too high to survive. Or, you passed out in your w/c and you did all of the above. Doesn't matter though because you're dead.

If you live with a family member, they have to stay sober and in control so they can do all of that for you. If you're sick or your care giver is sick, you still don't get a day off.

Its bloody hard work to constantly move heavy w/c's and other equipment. And the cost is just astronomical. Like it or not, ObamaCare will make such a difference for these people.

IMO, sometimes suicide is taking responsibility for your own life as well as sparing the people you love with the incredible burdens of a catastrophic injury or illness.

Our bodies belong to us, our lives belong to us. Pardon the poor grammar but IMO, the bottom line is that we should have that choice.

 

[Luddly Neddite]

I think I wrote this in another thread but -

Craig Rehab Hosp in Colorado requires that all new employees spend 24 hours as a spinal cord injury. That means being in a wheelchair, not using lower extremities and doing all the things one does during a 24 hour period. Shopping, eating out, getting in and out of a public bathroom, elevators and a lot more.

Unless one experiences it, one cannot even begin to understand what that life is like.

Unless one experiences it, one has no right to judge the actions of others.

Nothing like the self-righteous indignation of the clueless, eh?​

He's siding with you?

Boop, not sure what you mean here. Clarify, wouldja?

 

[KokomoJojo]

how can you expect anyone to answer that question accurately when lifes circumstances can change from minute to minute?

Like - how. You think he was suddenly going to be un-paralyzed?

Actually, I think he has a point. Or at least it speaks my own belief that life than turn on a dime.

I would like to say I would have the courage to put the needs of my loved ones before my own desire to stay alive. OTOH, I've known people who had NO function and NO sensation below the neck.

A young man who attempted suicide, missed his heart and shattered his spine. Very high functioning.

The beautiful wife of a wealthy sob who was planning suicide and, whit her two daughters in the next room, accidentally fired a pistol and was an instant quad. The rehab facility maintained an apartment house that had very few special amenities so that families could stay there with their CNS injured family member. She came back from her first weekend with her husband with her genitals so bruised and bleeding, it was hard to understand what the bastard had done. Since she could feel no pain, he apparently saw that as permission to repeatedly rape her.

A middle aged man who fell off a foot tall stool and broke his neck.

A young guy who was playing a pillow battle with his brother. The brother threw a pillow from across the room, the kid fell over and broke his neck. He always hated the drug nurse and figured out that if he started hitting his thigh when he heard her coming, by the time she was standing in front of him, his spastic leg would kick her.

Young guys were fearless in their chairs. You would often hear, "what's the worst that can happen to me? A broken neck?" We would go out bar hopping in big w/c vans. They would leave the stop cock on their leg bags open so the urine would dribble out rather than fill their leg bag and cause their blood pressure to spike. One bar had covered their floor with sawdust because it was a favorite haunt for the w/c patients.

One thing that people seldom consider is this - if you go out and come home drunk, its no big deal. You just fall into bed and sleep it off.

For spine injuries, one night of doing that could very easily kill you. Or, you could start a bed sore because you didn't properly pad your body and then didn't move all night. Or, you didn't hook up your pee tube to the bigger bed bag and you stroked out in the night because you bladder was backed up and caused your blood pressure to go too high to survive. Or, you passed out in your w/c and you did all of the above. Doesn't matter though because you're dead.

If you live with a family member, they have to stay sober and in control so they can do all of that for you. If you're sick or your care giver is sick, you still don't get a day off.

Its bloody hard work to constantly move heavy w/c's and other equipment. And the cost is just astronomical. Like it or not, ObamaCare will make such a difference for these people.

IMO, sometimes suicide is taking responsibility for your own life as well as sparing the people you love with the incredible burdens of a catastrophic injury or illness.

Our bodies belong to us, our lives belong to us. Pardon the poor grammar but IMO, the bottom line is that we should have that choice.

yeh you nailed it, thanks.

 

[FA_Q2]

And you personally knew the individual?

No?

In that case how do you know whether he had ‘inner strength’ or not?

Did you consider that he indeed had ‘inner strength’ which gave him the courage to make his end of life decision?

I posted a lengthy list of people who went on to live very successful lives as quadriplegics. It takes no inner strength to die. None. The most fearful die the soonest. It takes more to face challenges. If you do a quick look at artists who became artists after accidents left them quadriplegics you will find many people who learned to paint holding the brush in their mouth.

Commending a suicide because of catastrophic paralyzation is just the solace you would want because you know that you would not possibly want to be burdened with someone like that. You certainly wouldn't want to pay for care when that money could better be spent on buying yourself a new IPad. Now you have an out, they wanted it, it was for their own best interests (not to mention yours). It's a not very clever rationalization to make you feel better.

If we had a tiny bit of honesty floating around it would look something like this: If I had a loved one that ended up needing extraordinary care, I would hope they would decide to die rather than expect me to pitch in and take care of them. Now you can go around feeling all noble and all. It was your sacrifice instead of theirs.

What claptrap.

It's sad that you can't respect the man's choice to not live that way.

I don’t really get that from katz posts on this topic. Though you might be correct in what katz actually believes, from what was actually written I didn’t see any statements that would remove the man from being able to make that decision and end his own life. For sure that is his right – the ultimate right of controlling your life and body. The problem here is that there is another quite scary sentiment here – that this is MORE than just his decision or right. That it is actually the ‘noble’ and ‘brave’ action to take. I take issue with that idea as well. As I stated earlier in this thread, there is nothing brave about such a decision.

We should never fall into that trap where we are COMMENDING such a decision. That is really asinine. I accept it because it is your right but I do not praise it. You have the right to end your life but is not something that I will ever tell you that it was brave of you to decide to do so.

 

[AVG-JOE]

I think I wrote this in another thread but -

Craig Rehab Hosp in Colorado requires that all new employees spend 24 hours as a spinal cord injury. That means being in a wheelchair, not using lower extremities and doing all the things one does during a 24 hour period. Shopping, eating out, getting in and out of a public bathroom, elevators and a lot more.

Unless one experiences it, one cannot even begin to understand what that life is like.

Unless one experiences it, one has no right to judge the actions of others.

Nothing like the self-righteous indignation of the clueless, eh?​

He's siding with you?

Dunno... Mine is the only attitude I can be sure of.

This thread is mostly personal opinions, which is cool, because personal opinions are something everyone is entitled to. There are a few judgmental posts, but for the most part it is a great collection of personal opinions starting with the premise of "What if...", and personal stories based on a similar reality.

 

[Casjah]

To answer the OP: a resounding yes. I can't imagine life in a wheelchair. But with that being said, if I believed that a chance existed for recovery, I would fight like hell to recover.

Far as I can see, you have posited no question.

In his shoes, I would do the same: Yes, no or don't know.

Thank you. Myself? No.

But a friend of mine did choose his own death under similar circumstances. He crashed his motorcycle several years ago. My brother went to visit him in THE hospital. Pete tried to rip the respirator hose from his own throat. He was restrained, and kept hooked up. He died slow. Pete was a rebel, but he was nice to me when I was a kid. He had a wife and kid and all that.

My life is the last thing I have. I wouldn't take it from myself.

Sick. No one should be restrained against their will and forced to live in agony and die a slow death.

Ultimately, it's a personal choice that each of us should make for ourselves. No one else.

 

[BDBoop]

That's my perception, [MENTION=46047]Casjah[/MENTION]. I'd like to go the dignity and respect route.

 

[Vox]

It was less than a week. He did not have surgery, he did not have any rehab and in a situation like this with a 32 y o man a lot can happen - obviously he won't be able to walk, most likely, but..

I think the decision was made and asked to be made way too soon.

 

[Luddly Neddite]

That's the whole point -

Choice.

 

[Vox]

That's the whole point -

Choice.

it was hastened. made in shock. too soon.

 

[Esmeralda]

There IS LIFE after quadriplegia...of this I am quite certain.

Working my way through Boston Univ. I headed the West Campus' Boston Center for Independent Living.

My employees ( the quads) and I had a hell of a good time.

Ya never know until you're there, folks.

I agree, no one knows how they will feel if that situation arises. There is a difference between quads who don't need breathing apparatus to breath and those that do. It may make all the difference. If they can get around in wheelchairs and not be bedridden, that is also a big difference. In the end, it should be up to the individual, with support and counseling, to determine his or her own fate.

 

[midcan5]

"[H]e would never be able to walk or even live outside of a hospital again." I doubt it was the walking so much as the fact he would remain in the hospital. For a person who I assume was an outdoor's lover this is tragic. But then dead nothing much matters as nothing is all there is. Those who believe in an afterlife may think the next world is like cable TV but personally I think the end is the end. This tiny glimpse of infinity is all we get, so I'd opt for living. I'd want to see my grandkids grow up and hopefully see them successful and happy in life. But this brings me to an off topic thought, suppose instead time brings other tragedies in this vale of tears? I say that because I see the pain some suffer as some accident or life experience goes wrong. For me I remain the optimist, but that is me and certainly not him. If freedom means anything it means you decide.

 

[Luddly Neddite]

That's the whole point -

Choice.

it was hastened. made in shock. too soon.

I don't know because I wasn't there, didn't know him.

Even if I had known him, I still would not have known enough to have an opinion.

His body and his life belonged to him and him alone. He made the decision, it was his choice and I don't have the right to judge that.

 

[editec]

There IS LIFE after quadriplegia...of this I am quite certain.

Working my way through Boston Univ. I headed the West Campus' Boston Center for Independent Living.

My employees ( the quads) and I had a hell of a good time.

Ya never know until you're there, folks.

Yeah great times.

Having someone spoon feed you, empty your urostomy bag and shove a gloved hand up your ass to dig out the shit.

What a hoot!

Few Quads are entirely dependent on others, Spider

Depends on the degree of damage to the spine. Every SPI is differnet

I saw people after they were stabilized and yes, those folks found a modus vivendi they could accept.

None of us can really know how we'll react in that situation.

And do remember that you'll need help to kill yourself when you finally recover from the original trauma well enough to understand your situation.

Very few SPI folks kill themselves, amigo.