Over care VS undercare for Terminal Illnesses

[AmeliaG]

that IS the subtext of your statement - that a person's will is the final determining factor. It isn't. It is the determining factor in HOW one lives, not how long or WHETHER.

It doesn't even determine that. My mom was strong-willed, wanted to live to see her grandchildren, and wanted a good quality of life but she was misinformed and made bad choices based on misinformation. The doctors downplayed the seriousness of her cancer and didn't tell her how aggressive the cancer was during the Initial tests. They prescribed heavy radiation that burned her lungs and rendered her unable to breathe. Meanwhile, they knew she had been a heavy smoker with COPD and radiation carried a risk of further lung damage which she couldnt afford. Once she couldn't get enough oxygen, her quality of life deteriorated dramatically. She had no energy for eating, sitting up, even concentrating. She was miserable and scared. Her body started to deteriorate before she died. We almost couldn't have an open casket funeral.

Of course, we'll never know but I believe If she had been properly told of the risks of radiation and the aggressiveness of the cancer she would have chosen differently. All i can remember was how scared and lost she looked those past few days before she slipped into a coma. This was one of the worst times of my life and I still have an incredible anger over it.

 

[rainwood]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

Your dad sounds like a very strong person, and I am so glad to hear that you have had all these wonderful years after his illness. However, it doesn't sound to me that he was "overtreated". It sounds like he had some very harsh and aggressive treatments, but he had the determination to fight and I wouldn't say he was "overtreated". Stage IV cancer is very serious, but it's not terminal. I think that overtreatment would involve aggressive treatments that are done in an attempt to prolong the life of someone who had been diagnosed as terminal.

I also feel like your dad's resolution and determination to get better are a large part of why he got better. Someone who was emotionally weaker very well may not have survived such a diagnosis. I think a large part of the outcome of an illness lies within the patient: their attitude, desire to get better and ability to visualize themself healthy again.

At the risk of sounding as if I'm denigrating anyone's family member's determination and grit - and I'm NOT, it is that attitude that is precisely why people feel like they SHOULD be doing more, and feel massively guilty, and is very judgemental of those who DON'T get better and die in spite of an iron will and struggling and desiring and visualizing mightily, because that IS the subtext of your statement - that a person's will is the final determining factor. It isn't. It is the determining factor in HOW one lives, not how long or WHETHER one lives.

I guarantee, if you're ever diagnosed with cancer, no matter what stage or what kind, the first thing that will go through your mind (irrationally and involuntarily) is, "What did I DO wrong??" because we're subtly taught that we are in control of our health, that if only we DO the right things everything will be fine. But beyond a certain point, we are not in control.

I strongly agree with KSinger. My husband has been battling leukemia for 15 years, through lots of different treatments and most recently a stem-cell transplant so I know a lot about cancer, cancer patients, and cancer treatment. It takes a certain amount of fortitude and luck and good medical care to get through the treatments, but this notion that you have to be positive and stay positive in order to have a successful outcome is a crock. It asks the impossible of the patient and his or her loved ones. Having cancer sucks, getting treated for cancer sucks. That's the reality, and I always tell every cancer patient I talk to that it's okay to feel sad or unhappy or discouraged. That's normal, that's natural, that's healthy. And it won't endanger a successful outcome. Some of the most positive people I know have died of their disease. And some of the people who bitched and moaned through the whole thing are still alive.

Every patient should get to decide how much treatment he or she wants regardless of the likely outcome, and no choice should be considered a sign of emotional weakness. And every family member should respect the wishes of the patient regardless of whether they agree with the choice.

And while we're on the subject, here are the three things I NEVER tell someone who either is facing or has a loved one facing serious illness:

1. You need to stay positive.
2. Everything happens for a reason.
3. God never gives you more than you can handle.

You might think those are words of comfort, but the person hearing them may not. Just say "I'm so sorry. This must be so hard" then stop talking and start listening. That's all we need.

 

[Missy]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

Your dad sounds like a very strong person, and I am so glad to hear that you have had all these wonderful years after his illness. However, it doesn't sound to me that he was "overtreated". It sounds like he had some very harsh and aggressive treatments, but he had the determination to fight and I wouldn't say he was "overtreated". Stage IV cancer is very serious, but it's not terminal. I think that overtreatment would involve aggressive treatments that are done in an attempt to prolong the life of someone who had been diagnosed as terminal.

I also feel like your dad's resolution and determination to get better are a large part of why he got better. Someone who was emotionally weaker very well may not have survived such a diagnosis. I think a large part of the outcome of an illness lies within the patient: their attitude, desire to get better and ability to visualize themself healthy again.

At the risk of sounding as if I'm denigrating anyone's family member's determination and grit - and I'm NOT, it is that attitude that is precisely why people feel like they SHOULD be doing more, and feel massively guilty, and is very judgemental of those who DON'T get better and die in spite of an iron will and struggling and desiring and visualizing mightily, because that IS the subtext of your statement - that a person's will is the final determining factor. It isn't. It is the determining factor in HOW one lives, not how long or WHETHER one lives.

I guarantee, if you're ever diagnosed with cancer, no matter what stage or what kind, the first thing that will go through your mind (irrationally and involuntarily) is, "What did I DO wrong??" because we're subtly taught that we are in control of our health, that if only we DO the right things everything will be fine. But beyond a certain point, we are not in control.

I strongly agree with KSinger. My husband has been battling leukemia for 15 years, through lots of different treatments and most recently a stem-cell transplant so I know a lot about cancer, cancer patients, and cancer treatment. It takes a certain amount of fortitude and luck and good medical care to get through the treatments, but this notion that you have to be positive and stay positive in order to have a successful outcome is a crock. It asks the impossible of the patient and his or her loved ones. Having cancer sucks, getting treated for cancer sucks. That's the reality, and I always tell every cancer patient I talk to that it's okay to feel sad or unhappy or discouraged. That's normal, that's natural, that's healthy. And it won't endanger a successful outcome. Some of the most positive people I know have died of their disease. And some of the people who bitched and moaned through the whole thing are still alive.

Every patient should get to decide how much treatment he or she wants regardless of the likely outcome, and no choice should be considered a sign of emotional weakness. And every family member should respect the wishes of the patient regardless of whether they agree with the choice.

And while we're on the subject, here are the three things I NEVER tell someone who either is facing or has a loved one facing serious illness:

1. You need to stay positive.
2. Everything happens for a reason.
3. God never gives you more than you can handle.

You might think those are words of comfort, but the person hearing them may not. Just say "I'm so sorry. This must be so hard" then stop talking and start listening. That's all we need.

I could not agree more. Thank you for posting this Rainwood and Karen. Being supportive and listening are key. That's the only real action you can do. Be there and listen.
I hope your husband is doing well Rainwood.

 

[mimi72]

I believe everyone should have the option to painlessly end their own life when they are terminally ill.

+1

Amen to that ,deco.

Having been diagnosed with an aggressive form of breast cancer recently, I was informed of the regimen of treatments that might, just might, give me more time. Why put off the inevitable? If I were younger and had children to raise, it would have been a much more difficult decision. Now, however, no one depends on me. I already have pre-existing conditions which have changed my lifestyle completely.

I did have the tumour removed and that's as far as I'm willing to go. I have discussed my choice with our kids and my close friends. If anyone asks a question, I'll answer truthfully; otherwise, it will be kept quiet (not out of shame, though!).

I intend to enjoy the time I have left and have made sure that I have a DNR on file with my primary physician and the hospital. I also intend to find out more about the palliative care available in our town.

That's it, folks!

isaku - You deserve a comment on your brave post. I wish everyone were as strong and clear headed as you. All the best on your journey.

 

[isaku5]

Thanks Mimi I hope I'll be as clear-headed when the time comes.

I should have added that part of my decision making involved DH's father's horrible existence during his long fight with lung cancer. He was a very proud man who never asked for help, but when he would ask for his pain meds, he was told that it wasn't 'time' yet. He screamed in agony, but to no avail. It was never time.

 

[tuffyluvr]

I believe everyone should have the option to painlessly end their own life when they are terminally ill.

+1

Amen to that ,deco.

Having been diagnosed with an aggressive form of breast cancer recently, I was informed of the regimen of treatments that might, just might, give me more time. Why put off the inevitable? If I were younger and had children to raise, it would have been a much more difficult decision. Now, however, no one depends on me. I already have pre-existing conditions which have changed my lifestyle completely.

I did have the tumour removed and that's as far as I'm willing to go. I have discussed my choice with our kids and my close friends. If anyone asks a question, I'll answer truthfully; otherwise, it will be kept quiet (not out of shame, though!).

I intend to enjoy the time I have left and have made sure that I have a DNR on file with my primary physician and the hospital. I also intend to find out more about the palliative care available in our town.

That's it, folks!

isaku - You deserve a comment on your brave post. I wish everyone were as strong and clear headed as you. All the best on your journey.

isaku--I hadn't noticed your post. You are very brave for sharing, and for being so honest with yourself and those close to you regarding how you want to proceed with your illness.

 

[rainwood]

I believe everyone should have the option to painlessly end their own life when they are terminally ill.

+1

Amen to that ,deco.

Having been diagnosed with an aggressive form of breast cancer recently, I was informed of the regimen of treatments that might, just might, give me more time. Why put off the inevitable? If I were younger and had children to raise, it would have been a much more difficult decision. Now, however, no one depends on me. I already have pre-existing conditions which have changed my lifestyle completely.

I did have the tumour removed and that's as far as I'm willing to go. I have discussed my choice with our kids and my close friends. If anyone asks a question, I'll answer truthfully; otherwise, it will be kept quiet (not out of shame, though!).

I intend to enjoy the time I have left and have made sure that I have a DNR on file with my primary physician and the hospital. I also intend to find out more about the palliative care available in our town.

That's it, folks!

Isaku, I also wanted to say how sorry I am about your diagnosis. I totally understand and support your decision, and believe I would do the same thing in that position. My best to you and your family.

 

[diamondseeker2006]

Thanks Mimi I hope I'll be as clear-headed when the time comes.

I should have added that part of my decision making involved DH's father's horrible existence during his long fight with lung cancer. He was a very proud man who never asked for help, but when he would ask for his pain meds, he was told that it wasn't 'time' yet. He screamed in agony, but to no avail. It was never time.

Isabel, I am so sorry to hear this. They have made such strides in treating breast cancer, so I always have a lot of hope when I hear of new cases. Take care and do what is best for you!

 

[Skippy123]

Thanks Mimi I hope I'll be as clear-headed when the time comes.

I should have added that part of my decision making involved DH's father's horrible existence during his long fight with lung cancer. He was a very proud man who never asked for help, but when he would ask for his pain meds, he was told that it wasn't 'time' yet. He screamed in agony, but to no avail. It was never time.

Isabel, I am so sorry to hear this. They have made such strides in treating breast cancer, so I always have a lot of hope when I hear of new cases. Take care and do what is best for you!

Isabel, I too am sorry to hear this; you are such a graceful and amazing lady. sending some hugs your way.

 

[diamondseeker2006]

My dad died of alzheimer's, so all we could do was wait. It was horrible but I do not believe in assisted suicide. My mother is in a nursing home and we were informed about why a DNR needed to be signed and asked our mother's doctor to explain it to her. We almost had a heart attack when her young 20-something minister came to visit and talked her into revoking it???!!!! I had to do a lot of damage control on that and my mother agreed to leave it as it is. I meant to call that young woman and tell her that of all people, she should be encouraging people to look forward to a pain-free eternity rather than suffering here longer!!! Good grief!!!

One note, there is a huge difference in doing aggressive treatment in someone who is young and relatively strong as opposed to someone in their 80's. My mom keeps asking to go for a mammogram and we point out that she certainly couldn't handle surgery or treatment at this point! So hard.

 

[princesss]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

Your dad sounds like a very strong person, and I am so glad to hear that you have had all these wonderful years after his illness. However, it doesn't sound to me that he was "overtreated". It sounds like he had some very harsh and aggressive treatments, but he had the determination to fight and I wouldn't say he was "overtreated". Stage IV cancer is very serious, but it's not terminal. I think that overtreatment would involve aggressive treatments that are done in an attempt to prolong the life of someone who had been diagnosed as terminal.

I also feel like your dad's resolution and determination to get better are a large part of why he got better. Someone who was emotionally weaker very well may not have survived such a diagnosis. I think a large part of the outcome of an illness lies within the patient: their attitude, desire to get better and ability to visualize themself healthy again.

At the risk of sounding as if I'm denigrating anyone's family member's determination and grit - and I'm NOT, it is that attitude that is precisely why people feel like they SHOULD be doing more, and feel massively guilty, and is very judgemental of those who DON'T get better and die in spite of an iron will and struggling and desiring and visualizing mightily, because that IS the subtext of your statement - that a person's will is the final determining factor. It isn't. It is the determining factor in HOW one lives, not how long or WHETHER one lives.

I guarantee, if you're ever diagnosed with cancer, no matter what stage or what kind, the first thing that will go through your mind (irrationally and involuntarily) is, "What did I DO wrong??" because we're subtly taught that we are in control of our health, that if only we DO the right things everything will be fine. But beyond a certain point, we are not in control.

Thank you for posting this, KSinger. I wanted to post something similar - I think the language of it being a "fight" that we can win is really detrimental to actually coping with a diagnosis.

My ex's dad had an iron will, and when he put his mind to something, it happened. When he passed away, he hadn't seen any of his children get married, he had no grandchildren, he hadn't even really gotten to enjoy living alone with his wife again after the kids left the house. He wanted nothing more than to get better, but it didn't happen. And it's because a disease isn't something you fight. It's something you treat and, if it's part of your belief system, you pray about. But it is not a "battle," it's a shitty situation.

 

[tuffyluvr]

Um, my dad has probably been what some would consider "over-cared for." He was diagnosed with stage IV colorectal cancer 8 years ago, went through several awfully traumatic surgeries, was technically dead for half an hour at one point, lost a bunch of internal organs, and went through the harrowing experience of chemotherapy for several months. That over-care has given him 6.5 more years (after 1.5 years of treatment) with a darn good quality of life with his family (and us with him). I'm glad he chose to treat his cancer aggressively, and that he had an iron will and determination to beat its a$$. My mother always says she wouldn't have the strength to have gone through all of that and would've just wanted to die. To each their own. My dad is around to have met both of his granddaughters, he is active socially and physically, still goes to work Monday-Friday at one of his businesses, and keeps 7 acres of lawn mowed from spring through fall. He's 72 and he does more than a lot of 60 year olds.

Your dad sounds like a very strong person, and I am so glad to hear that you have had all these wonderful years after his illness. However, it doesn't sound to me that he was "overtreated". It sounds like he had some very harsh and aggressive treatments, but he had the determination to fight and I wouldn't say he was "overtreated". Stage IV cancer is very serious, but it's not terminal. I think that overtreatment would involve aggressive treatments that are done in an attempt to prolong the life of someone who had been diagnosed as terminal.

I also feel like your dad's resolution and determination to get better are a large part of why he got better. Someone who was emotionally weaker very well may not have survived such a diagnosis. I think a large part of the outcome of an illness lies within the patient: their attitude, desire to get better and ability to visualize themself healthy again.

At the risk of sounding as if I'm denigrating anyone's family member's determination and grit - and I'm NOT, it is that attitude that is precisely why people feel like they SHOULD be doing more, and feel massively guilty, and is very judgemental of those who DON'T get better and die in spite of an iron will and struggling and desiring and visualizing mightily, because that IS the subtext of your statement - that a person's will is the final determining factor. It isn't. It is the determining factor in HOW one lives, not how long or WHETHER one lives.

I guarantee, if you're ever diagnosed with cancer, no matter what stage or what kind, the first thing that will go through your mind (irrationally and involuntarily) is, "What did I DO wrong??" because we're subtly taught that we are in control of our health, that if only we DO the right things everything will be fine. But beyond a certain point, we are not in control.

Thank you for posting this, KSinger. I wanted to post something similar - I think the language of it being a "fight" that we can win is really detrimental to actually coping with a diagnosis.

My ex's dad had an iron will, and when he put his mind to something, it happened. When he passed away, he hadn't seen any of his children get married, he had no grandchildren, he hadn't even really gotten to enjoy living alone with his wife again after the kids left the house. He wanted nothing more than to get better, but it didn't happen. And it's because a disease isn't something you fight. It's something you treat and, if it's part of your belief system, you pray about. But it is not a "battle," it's a shitty situation.

Hi, I just wanted to clarify--I meant this comment in the context of having my first comment as a preface:

by tuffyluvr » 01 Oct 2012 11:32
..."I strongly feel that many cultures need to be more accepting of the process of dying, and the taboo of death and dying needs to become obsolete. Terminally ill patients deserve to enjoy their last months and weeks of life, rather than feeling like they can change the outcome if they only fight harder, try a different treatment, drug or surgery. Sometimes no matter what measures are taken and how hard the patient fights the result will be the same, but they might feel that they are giving up, or they owe it to their family to keep trying if doctors continue to present them with treatment options. I feel they should have a trained expert help patient and their family come to terms with the inevitable, help them prepare and remain comfortable."

I totally see how the idea of "fighting" illness can be harmful to one's coping. And even insulting... it makes it seem as though a patient has the power to control the outcome, and if they "submit" they're weak. What I meant was: having the will to live when there is an opportunity to get better. I think that some people who have the opportunity to get better don't because they don't want to--they just give up. A couple examples are people living with chronic pain/illness or someone who has lost someone they are very close to (like when a longtime spouse/companion dies). It's hard not to want to give up when you are hurting, and I think it takes a lot of inner strength to go on when you are feeling lousy mentally and physically.

When I post I find I often don't get across what I am trying to. I should probably post less and read more!

 

[TooPatient]

I just spoke today to a very kind man. He has been wonderful to know for the last 4 1/2 years. He's the sort to go out of his way to offer a kind word or assistance. I enjoy watching out the window as he plays with his dogs and the smile in his eyes as he is so full of life and love for them and his family.

He was recently diagnosed with prostate cancer and given 10 years to live. He'll be "lucky" to make it another 6 months. This man is in his 50's. His wife has been battling lung cancer since before we knew them. She's losing her battle as well and doesn't have much more time than he does.

This man's attitude is amazing. He said that we all have to go sometime and we don't get to pick when that will be. He plans to be active and living as long as he's able. They've got him on hospice care at home and he very nearly died last week due to medication side effects. They are not doing any treatments for him. Just comfort measures.

I will truly miss him when he is gone. He is handling this difficult situation with more grace and dignity than anyone should be expected to show.

 

[susimoo]

I will take my own life when it becomes more bad than good.

Everyone can begin the grieving and healing process sooner, and a ton of money will not go down the drain.
Yeah, life is precious, blah blah blah, but not beyond a certain point.

I am with Kenny. I and only I, will make the decision that this is the end, I will then end it in a way that I see fitting. I will be in control at the end, as much as I am in control today. Having watched those that I love hand the burden to doctors to decide, I hope I will have the strenght to take control, for myself.

Kaleigh, you are in my thoughts, always.

Man plans, and God laughs . . . It's easy to say, but usually it doesn't work out that way.

My aunt's father was a member of the hemlock society, a renowned physician, etc. He was ready to "unburden his family when the time came". Dementia hit him fast and hard, and he couldn't remember the hemlock society pills, much less find them, when the time came.

Your only hope to gain control over your own death is to relinquish control to loved ones. Sign a power of attorney, sign a do not resuscitate order, sign a donor card. Then give copies to as many family members as you can.

I am hoping to be walking across the room, then hit the floor, BAM! Something like death by tequila.

iLander, given that you have a well tested gift, I am hoping you don't know something I should!!

When I wrote that I was very emotional. Not only about the thread itself, but because two of my closest friends back home in Scotland are fighting the brave fight. I feel very guilty because I am not there with them, when I should be.

I keep thinking about what would I do if it was me with their diagnosis. That is why I said if I knew it was coming, in the way that they do, I would want to believe I would take control. I do not want it to go on and on, to the detriment of what life I had left.

Just wanted to say that. I do not think it will be as simple as the few sentences that I wrote. I just hope I have the courage to do the right thing for me as well as those I love.

 

[mimi72]

My dad died of alzheimer's, so all we could do was wait. It was horrible but I do not believe in assisted suicide. My mother is in a nursing home and we were informed about why a DNR needed to be signed and asked our mother's doctor to explain it to her. We almost had a heart attack when her young 20-something minister came to visit and talked her into revoking it???!!!! I had to do a lot of damage control on that and my mother agreed to leave it as it is. I meant to call that young woman and tell her that of all people, she should be encouraging people to look forward to a pain-free eternity rather than suffering here longer!!! Good grief!!!

DS - That is crazy. Community spiritual leaders are a great resource generally but occasionally counterproductive in end of life conversations. The clinical part of it is very complicated, and they are hearing the story second hand from the family rather than the docs.

I have observed too that sometimes patients/families who describe themselves as very religious are the ones who refuse to let go the longest. I hear over and over "you should do everything you can...God will take her when he's ready no matter what you do". Consequently people with end stage dementia, cancer, etc get tethered to ventilators, CPR/chest compressions etc. Basically flogged their last weeks and months, with zero quality of life because they are delirious /incoherent/comatose or sedated, and then die anyway. All that is ok if there is a chance of improvement back to an acceptable quality of life. But we continue too often when that kind of improvement is no longer possible. And we wonder why US healthcare costs are out of control.

At some point, the body politic is just going to have to take a stand that, for example, someone in a permanent vegetative state is not a candidate to be started on dialysis when their kidneys fail. We can be aggressive with comfort and dignity, but we do so much more that does not add any value whatsoever to humanity. Except I guess for the medical equipment suppliers and nursing home industries. Contrary to what's often stated, hospitals do not make money off these cases and docs (usually) do not push these treatments out of self interest. We hate these cases and they contribute to a lot of stress and burn out. But to play the devil's advocate - the reimbursement system is partially to blame - an oncologist makes a lot of income by administering chemotherapy in their office, and practically nothing for discussing end of life wishes.

Just recently, a patient with end stage Alzheimer's, bed sores so bad you can see her tailbone, bedbound contracted and nonverbal, fed with a tube, was admitted with an infection. Infection is how people like this usually die. She was breathing fast so was put on a ventilator. We could not get her off the vent after almost 2 weeks because she is too weak to breathe on her own. Every physician on the case (about 5) advised the patient's son to let us take her off the machine and keep her comfortable for what time she has left. After multiple meetings, he said no, you have to keep her alive, no matter what...so today she is getting a tracheostomy so she can stay on the vent, go to a higher level of nursing home, and probably die anyway in a few months. But with another unnecessary hole in her body that does nothing but prolong the dying process. And this lady is a "full code" so when her heart does eventually give out she'll be getting chest compressions and defibrillation to try to bring her back to this existance. It is absolute insanity.

More than tort reform, or any other reform, IMO a solution is education. As in, an educated population. Again my experience...more educated patients and families TEND to make measured, rational decisions about their healthcare treatments and consumption. The less educated, often rightly so, are often suspicious of treatments being withheld from them and want stuff done beyond the point where it makes sense. So the money we are pouring into healthcare right now would be much better spent in reforming our broken public education system.

Just my opinions. I know there are others who see these issues differently. To say it's complex is a dramatic understatement.

Off my soapbox now.

 

[aljdewey]

I totally see how the idea of "fighting" illness can be harmful to one's coping. And even insulting... it makes it seem as though a patient has the power to control the outcome, and if they "submit" they're weak. What I meant was: having the will to live when there is an opportunity to get better. I think that some people who have the opportunity to get better don't because they don't want to--they just give up. A couple examples are people living with chronic pain/illness or someone who has lost someone they are very close to (like when a longtime spouse/companion dies). It's hard not to want to give up when you are hurting, and I think it takes a lot of inner strength to go on when you are feeling lousy mentally and physically.

When I post I find I often don't get across what I am trying to. I should probably post less and read more!

Tuffy, I guess I see this a bit differently. I guess I don't really see those things as "giving up". To me, quality of life is not just about physical capabilities. We are more than our physical selves; there is also our emotional selves, and quality of life there is equally important, I think.

If someone has lost the love of their life, the state of continuing on in deep grief and loneliness might be considered as not having good quality of life by some. To label this as 'giving up' would seem to ignore the importance some people may place on their emotional quality of life.

Honestly, I dislike the whole "giving up" theme in general, whether related to physical or emotional. I really feel that each person should be entitled to decide how they want to live and under what conditions they want to live without judgment.

 

[princesss]

I totally see how the idea of "fighting" illness can be harmful to one's coping. And even insulting... it makes it seem as though a patient has the power to control the outcome, and if they "submit" they're weak. What I meant was: having the will to live when there is an opportunity to get better. I think that some people who have the opportunity to get better don't because they don't want to--they just give up. A couple examples are people living with chronic pain/illness or someone who has lost someone they are very close to (like when a longtime spouse/companion dies). It's hard not to want to give up when you are hurting, and I think it takes a lot of inner strength to go on when you are feeling lousy mentally and physically.

When I post I find I often don't get across what I am trying to. I should probably post less and read more!

Tuffy, I guess I see this a bit differently. I guess I don't really see those things as "giving up". To me, quality of life is not just about physical capabilities. We are more than our physical selves; there is also our emotional selves, and quality of life there is equally important, I think.

If someone has lost the love of their life, the state of continuing on in deep grief and loneliness might be considered as not having good quality of life by some. To label this as 'giving up' would seem to ignore the importance some people may place on their emotional quality of life.

Honestly, I dislike the whole "giving up" theme in general, whether related to physical or emotional. I really feel that each person should be entitled to decide how they want to live and under what conditions they want to live without judgment.

I totally agree, Alj. I think it's a really interesting exercise to think about at what it becomes acceptable for a person to live (or die) for themselves (hint: I think it's always acceptable). Personally, I hardly think "giving up" is the correct term. I believe a person's body is their own, and how they want to live is their own choice. And if that includes not choosing aggressive treatments for fatal diseases or not engaging in life when their partner passes away, well...so what? (Would I personally prefer it if people who chose that did not have children depending on them? Well, yes. Of course. But that's also not up to me.)

 

[tuffyluvr]

I totally see how the idea of "fighting" illness can be harmful to one's coping. And even insulting... it makes it seem as though a patient has the power to control the outcome, and if they "submit" they're weak. What I meant was: having the will to live when there is an opportunity to get better. I think that some people who have the opportunity to get better don't because they don't want to--they just give up. A couple examples are people living with chronic pain/illness or someone who has lost someone they are very close to (like when a longtime spouse/companion dies). It's hard not to want to give up when you are hurting, and I think it takes a lot of inner strength to go on when you are feeling lousy mentally and physically.

When I post I find I often don't get across what I am trying to. I should probably post less and read more!

Tuffy, I guess I see this a bit differently. I guess I don't really see those things as "giving up". To me, quality of life is not just about physical capabilities. We are more than our physical selves; there is also our emotional selves, and quality of life there is equally important, I think.

If someone has lost the love of their life, the state of continuing on in deep grief and loneliness might be considered as not having good quality of life by some. To label this as 'giving up' would seem to ignore the importance some people may place on their emotional quality of life.

Honestly, I dislike the whole "giving up" theme in general, whether related to physical or emotional. I really feel that each person should be entitled to decide how they want to live and under what conditions they want to live without judgment.

I agree with you--I am in no way trying to diminish a person's perspective on their quality of life. But I absolutely do think that some people are so mentally and physically drained that they make a decision (whether it be concsious or unconcsious) that they are ready to transition. I suppose "giving up" sounds insensitive and was a poor choice of words, but I was trying to make the point that human will is extremely powerful. I think everyone has heard of a peson who was in otherwise excellent health, but quickly deteriorated and "died of sadness" after losing a spouse/companion/friend. My exes grandparents are a perfect example--they were together for nearly 70 years and after he died she was never the same and despite being in excellent health (for an 80-something) passed a few months later. Of course you could say it's purely coincidental, but I honestly don't think that she wanted to go on living without him.

On the flip side, you hear of people who live for years with terrible illness, chronic pain and survive horrific accidents. I don't know if I could find the strength to live through what some have. Certainly there is an amount of coincidence/circumstances/luck/whatever involved, but I truly do feel that human will and determination are a factor. Not the only factor, for sure, but I do believe that certain people survive the *near* impossible for a reason.

 

[tuffyluvr]

I totally see how the idea of "fighting" illness can be harmful to one's coping. And even insulting... it makes it seem as though a patient has the power to control the outcome, and if they "submit" they're weak. What I meant was: having the will to live when there is an opportunity to get better. I think that some people who have the opportunity to get better don't because they don't want to--they just give up. A couple examples are people living with chronic pain/illness or someone who has lost someone they are very close to (like when a longtime spouse/companion dies). It's hard not to want to give up when you are hurting, and I think it takes a lot of inner strength to go on when you are feeling lousy mentally and physically.

When I post I find I often don't get across what I am trying to. I should probably post less and read more!

Tuffy, I guess I see this a bit differently. I guess I don't really see those things as "giving up". To me, quality of life is not just about physical capabilities. We are more than our physical selves; there is also our emotional selves, and quality of life there is equally important, I think.

If someone has lost the love of their life, the state of continuing on in deep grief and loneliness might be considered as not having good quality of life by some. To label this as 'giving up' would seem to ignore the importance some people may place on their emotional quality of life.

Honestly, I dislike the whole "giving up" theme in general, whether related to physical or emotional. I really feel that each person should be entitled to decide how they want to live and under what conditions they want to live without judgment.

I totally agree, Alj. I think it's a really interesting exercise to think about at what it becomes acceptable for a person to live (or die) for themselves (hint: I think it's always acceptable). Personally, I hardly think "giving up" is the correct term. I believe a person's body is their own, and how they want to live is their own choice. And if that includes not choosing aggressive treatments for fatal diseases or not engaging in life when their partner passes away, well...so what? (Would I personally prefer it if people who chose that did not have children depending on them? Well, yes. Of course. But that's also not up to me.)

I agree with you completely--I think that people should have the choice to die if they want to--whether they want to end their own life by assisted suicide or just by "not engaging" as you said. The phrase "giving up" seems to be offensive, but I'm not exactly sure how to word what I am trying to convey... I do think that some people come to a point in their life where they feel like they are ready to go. I suppose it's not "giving up" if you want to go--maybe the right words are "choosing not to go on'?... I don't know. I feel like it's silly for me to argue semantics, but I am finding it frustrating that I don't seem to be able to get my point across.

 

[princesss]

I totally see how the idea of "fighting" illness can be harmful to one's coping. And even insulting... it makes it seem as though a patient has the power to control the outcome, and if they "submit" they're weak. What I meant was: having the will to live when there is an opportunity to get better. I think that some people who have the opportunity to get better don't because they don't want to--they just give up. A couple examples are people living with chronic pain/illness or someone who has lost someone they are very close to (like when a longtime spouse/companion dies). It's hard not to want to give up when you are hurting, and I think it takes a lot of inner strength to go on when you are feeling lousy mentally and physically.

When I post I find I often don't get across what I am trying to. I should probably post less and read more!

Tuffy, I guess I see this a bit differently. I guess I don't really see those things as "giving up". To me, quality of life is not just about physical capabilities. We are more than our physical selves; there is also our emotional selves, and quality of life there is equally important, I think.

If someone has lost the love of their life, the state of continuing on in deep grief and loneliness might be considered as not having good quality of life by some. To label this as 'giving up' would seem to ignore the importance some people may place on their emotional quality of life.

Honestly, I dislike the whole "giving up" theme in general, whether related to physical or emotional. I really feel that each person should be entitled to decide how they want to live and under what conditions they want to live without judgment.

I totally agree, Alj. I think it's a really interesting exercise to think about at what it becomes acceptable for a person to live (or die) for themselves (hint: I think it's always acceptable). Personally, I hardly think "giving up" is the correct term. I believe a person's body is their own, and how they want to live is their own choice. And if that includes not choosing aggressive treatments for fatal diseases or not engaging in life when their partner passes away, well...so what? (Would I personally prefer it if people who chose that did not have children depending on them? Well, yes. Of course. But that's also not up to me.)

I agree with you completely--I think that people should have the choice to die if they want to--whether they want to end their own life by assisted suicide or just by "not engaging" as you said. The phrase "giving up" seems to be offensive, but I'm not exactly sure how to word what I am trying to convey... I do think that some people come to a point in their life where they feel like they are ready to go. I suppose it's not "giving up" if you want to go--maybe the right words are "choosing not to go on'?... I don't know. I feel like it's silly for me to argue semantics, but I am finding it frustrating that I don't seem to be able to get my point across.

*takes English major hat off of the shelf and dusts it off*

I think the combination of "just giving up" and saying it takes a lot of strength to continue on when you feel lousy made it sound like you think people who decide not to continue to treat are weak. I understand what you mean a lot better now - this is exactly why I think the language of illness as a battle is damaging to conversations surrounding it. We bring the language of conflict and victory to something much more complex and uncertain, and the associations we have with the words being used aren't always immediately relevant to the conversation but still inform how we react to the things being said.

I've given this all a lot of thought since losing a family friend to cancer, and to having many people around me affected by it in very deep ways, so I think I (and probably a lot of people on this thread) might have a bit of a jump start having already hammered out our terminology and beliefs surrounding terminal illness and dying.

 

[princesss]

Thanks Mimi I hope I'll be as clear-headed when the time comes.

I should have added that part of my decision making involved DH's father's horrible existence during his long fight with lung cancer. He was a very proud man who never asked for help, but when he would ask for his pain meds, he was told that it wasn't 'time' yet. He screamed in agony, but to no avail. It was never time.

I didn't comment before, but I am so sorry to hear about your diagnosis, isaku. But having seen a friend go through it...well, I think there is a lot of value in looking at your life and deciding exactly what you're comfortable with.

Big hugs.

 

[tuffyluvr]

I totally see how the idea of "fighting" illness can be harmful to one's coping. And even insulting... it makes it seem as though a patient has the power to control the outcome, and if they "submit" they're weak. What I meant was: having the will to live when there is an opportunity to get better. I think that some people who have the opportunity to get better don't because they don't want to--they just give up. A couple examples are people living with chronic pain/illness or someone who has lost someone they are very close to (like when a longtime spouse/companion dies). It's hard not to want to give up when you are hurting, and I think it takes a lot of inner strength to go on when you are feeling lousy mentally and physically.

When I post I find I often don't get across what I am trying to. I should probably post less and read more!

Tuffy, I guess I see this a bit differently. I guess I don't really see those things as "giving up". To me, quality of life is not just about physical capabilities. We are more than our physical selves; there is also our emotional selves, and quality of life there is equally important, I think.

If someone has lost the love of their life, the state of continuing on in deep grief and loneliness might be considered as not having good quality of life by some. To label this as 'giving up' would seem to ignore the importance some people may place on their emotional quality of life.

Honestly, I dislike the whole "giving up" theme in general, whether related to physical or emotional. I really feel that each person should be entitled to decide how they want to live and under what conditions they want to live without judgment.

I totally agree, Alj. I think it's a really interesting exercise to think about at what it becomes acceptable for a person to live (or die) for themselves (hint: I think it's always acceptable). Personally, I hardly think "giving up" is the correct term. I believe a person's body is their own, and how they want to live is their own choice. And if that includes not choosing aggressive treatments for fatal diseases or not engaging in life when their partner passes away, well...so what? (Would I personally prefer it if people who chose that did not have children depending on them? Well, yes. Of course. But that's also not up to me.)

I agree with you completely--I think that people should have the choice to die if they want to--whether they want to end their own life by assisted suicide or just by "not engaging" as you said. The phrase "giving up" seems to be offensive, but I'm not exactly sure how to word what I am trying to convey... I do think that some people come to a point in their life where they feel like they are ready to go. I suppose it's not "giving up" if you want to go--maybe the right words are "choosing not to go on'?... I don't know. I feel like it's silly for me to argue semantics, but I am finding it frustrating that I don't seem to be able to get my point across.

*takes English major hat off of the shelf and dusts it off*

I think the combination of "just giving up" and saying it takes a lot of strength to continue on when you feel lousy made it sound like you think people who decide not to continue to treat are weak. I understand what you mean a lot better now - this is exactly why I think the language of illness as a battle is damaging to conversations surrounding it. We bring the language of conflict and victory to something much more complex and uncertain, and the associations we have with the words being used aren't always immediately relevant to the conversation but still inform how we react to the things being said.

I've given this all a lot of thought since losing a family friend to cancer, and to having many people around me affected by it in very deep ways, so I think I (and probably a lot of people on this thread) might have a bit of a jump start having already hammered out our terminology and beliefs surrounding terminal illness and dying.

I didn't mean to offend you. I guess I should hammer out my terminology and beliefs before I comment. I just felt compelled to comment because this *is* a subject close to my heart. I lost my mom to pancreatic cancer when I was 19. My dad wasn't in the picture, so I, along with my 17 year old sister and help from in-home hospice care, cared for her. I know she wanted to live--she had surgeries, chemo pump and radiation hoping something would work. She tried everything, and I know that passing was hard for her. She didn't want to leave my sister and I, but she was so sick. I wish she would have stopped treatment and come home, but that is a very personal decision. She had several surgeries and ended up in hospital, then a nursing care facility. I felt terrible for her being in a nursing home. Its such a strange and unfamiliar place. I would have preferred having her at home. But, again, it was her choice to continue treatment even though the prognosis was poor.

 

[princesss]

Oh, shoot, I didn't mean to offend you! I'm sorry!

I'm also sorry for your loss - I haven't been in that position, but I know my ex (whose father passed away a year ago) really struggled with watching the treatment, and seeing his dad go from a heatlhy, robust guy to somebody just wrecked by cancer.

 

[wildcat03]

Hi,

There was a TV show on PBS this past week that tried to deal with some of these issues. As was stressed in the program by Drs. is that the conclusion that health care wuill be rationed would not occur if, in fact, we had the outcomes of these treatments documented.
According to this program we are indeed over treating and prolonging life unnecessarily. However, we must DOCUMENT certain treatment plans so we can assess the outcomes, thus having a more ratioanal system than "the standard of care" rational. Hospitals, even when required by law to keep certain records, still hold back information.

The examples used were from a Los Angeles facility vs one in Utah. The used prostate cancer, C-sections and terminally ill patients with markedly different outcomes from different forms of care. Quite an eye opener and excellent ideas. Utah did a great job .

Medicare recently stopped all surgeries on a condition in the brain for people over the age of 70. The surgery almost always resulted in death.(I don't recall the exact name ).

Just so you know - the stopping certain surgeries over age 70 was a complete fabrication. Doesn't exist, in any way, shape, or form. People started the same rumor about Obamacare - not true.

The show on PBS neglected to address that LA and Utah are completely different environments. Utah has a MUCH lower rate of obesity, drug abuse, and alcohol abuse. The amount of charity care available in Utah is astounding. Utah does a great job, but it's a much smaller state with a much smaller number of health centers (Intermountain is huge, state-wide, with one large flagship facility - much different from anything in California)