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Medical Establishment Mentality RE: The Terminally Ill


Bill

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IMO, and I'm only speaking from my personal experience, the medical establishment mentality towards the terminally ill ( in my wife's case Stage 4 NSCLC with brain, bone and some soft tissue mets ) absolutely STINKS. IMO it's largely a statistical mentality and any attempt to derail this expected grim statistical outcome is met with resistance. It runs the gamut from cold hearted clinicians that openly write off the patient to compassionate clinicians that don't see much hope but at least are willing to cooperate with continued tx efforts. We are fortunate that my wife has a new PCP and another specialist or two that fit the latter category. Unfortunately, the majority fit the former category. I have run into very formidable resistance in getting some of these clinicians to cooperate with any further tx efforts. For instance, even my wife's med onc had to be pressured by several colleagues into prescribing Tarceva. I mean he was hammered by at least 10 physicians, nurses and social workers over the course of a single day leading up to him RXing Tarceva that same evening. My wife's previous PCP stoned walled tx efforts and painted such a horrible picture to my wife and the family that he was fired right in ICU and replaced by a compassionate PCP that was willing to let my wife live to fight another day. Also, a hospital case manager that overheard this PCP's very harsh and cruel comments reported him to his supervisor. I intend on reporting him to the CMA. Even the radiology reports from chest x-rays and scans related to my wife's latest crisis and hospitalization contain unnecessary verbage inserted as if to rule out any improvement noted as indicative that her metastatic disease may be improving. I even had one physician question my wife's resuscitation orders ! Also, FYI, I am surprised at how few clinicians are familiar with Tarceva and Iressa beyond the names. Most have no idea at all about how these drugs work when they WORK and the role that they might play in a case such as my wife's if they work. Yet, these same people are the ones making judgment calls about her condition and destiny. The battle to keep this resistance in check has become bigger than the cancer battle itself. It is extremely draining and definitely unappreciated. At this writing I honestly don't know how much Tarceva has contributed to my wife's marked improvement. Still too soon I guess and time will tell. But, this I do know. Had it not been for a couple of compassionate clinicians, she wouldn't have even been given the opportunity to find out.

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Bill,

From someone walking the other side of the road you're on .... keep up the fight! It's tireing, frustratiing and often confusing as to why there should have to be a battle at all.

In a perfect world a person would make the choice of treatment or not and the medical proffession would swing into gear to make that persons wishes a reality. This, as we both know, is not the case.

In my case it was my scooter that started the battle. Since I chose not to recieve agressive tx for my cancer they (the VA) didn't want to give me a mobility device. Luckily I have a doctor who doesn't take no for an answer and knew where a few skeletons were buried.

Each person should have the ability to make his/her own choice and have the care appropriate to that choice. If we keep fighting for that maybe the next person comming down the pike won't have quite so rough a time of it.

Dean

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Bill,

I have not experienced what you and your dear wife have endured

by these uncaring and cold hearted physicians. It is oh so true what

you are saying. That is why I asked the question of the experts here on

this website. Once you are staged a IV, does that mean no more tx be-

cause you are that stage. As I read some of the posts from several

people here on this site, especially from the newcomers this is what

they are being told. It's all over for your loved one, go home and get

things in order. That is BS, a lady in my support group who

was a stage IV back in 1980, she had surgery and is still here. I truly

believe the only person who can tell me I'm terminal is my Lord, Jesus.

I have told my doctors this too. As long as I have and pay for my

insurance, the doctor's better da** well treat me or they are so FIRED...

God Bless, Prayers and what an advocate,

Karen - So California

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Bill,

It seems that the ER is a great place to meet someone in the medical establishment who is lacking in sense and empathy - something drastically needed for good bedside manner.

My PCP was the one who was given results showing a "mass" and she sent me to someone who is the best in the area (and then some) for follow-up. I guess that him being so well revered helped in my consequential treatment surgery through follow-ups with a really great oncologist. Really great? Yeah, he told me to go for a second opinion and lined me all up with tests, etc., to go down to Houston's M.D. Anderson...

Now, after all that, I went back to work. While at work, we had a small electrical fire and I was the canary that smelled the smoke...and started coughing/hacking...and couldn't quit...so I was sent to the ER via company ambulance. The ER doctor was very cold after hearing history - the PA was great. The doctor's mother had died of LC and he still couldn't scrape up human decency...go figure!

On the flip side, my grandfather had prostate cancer that was very huge a couple of decades ago. His doctor and the "Big Cancer Center" doctors wrote him off. While on his farewell tour and visiting my uncle in Florida, he ended up in ER and met a doctor who told him he could remove his cancer - and my "terminally ill" grandfather went from 3-6 months to being considered cured! (Unfortunately, it DID come back and he died of brain/bone mets - ten years later.)

I guess it's all just a crap shoot. I was lucky at the beginning and my "team" is really good - it's when I have to go outside of that comfort zone that I have the possibility of problems. I am sorry that you two have had such an uneven playing field while battling a monster. I sure hope that the new stuff continues and the quality of life increases and stress decreases.

As for an ER doctor not knowing about what drugs do what, especially in cancer research...well, aren't they basically for triage anyway? They can do stitches and refer you to an on-call surgeon for bullet wounds, etc., but they are not surgeons nor oncologists nor endocrinologists, etc., themselves....

My hope for you in a long ride on a smoother trail.

xxoo,

Becky

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Bill - this is something I totally agree with you on. It's absolutely insane that some clinicians write folks off. I experienced this in a very small way this weekend when I took Dave to the ER for excruiating pain and got the most cold hearted blunt physician's assistant that ever walked the earth (more explanation in our post). That is very small next to what you've experienced with your wife's medical care. but I got a taste of it. Fortunately we don't get that with Dave's oncologist. Dave is on his THIRD bout of EXTENSIVE SCLC which is REALLY deadly stuff - agressive, mean, fast growing cancer - and his oncologist promised him he would never give up on him and would keep trying everything. The same oncologist is treating my mother for her Stage IV colon cancer and he's put out with her because she's not fighting hard enough - and he's far from given up on her!

Just keep fighting, making your case, and firing those who don't agree with you. Karen is right. Our Lord Jesus and our Father God in Heaven are the only ones who have the final say over our destiny. Not the docs.

Hang in there. vent here as you need it. as you have seen, many of us have needed venting in the past, for smaller things, but obstacles are obstacles when you're beating back this awful beast.

God Bless,

Karen

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Bill,

I'm so sorry you and your wife have had such a difficult time with the doctors. Your experience makes me so thankful for the caring doctors that we have dealt with. I believe in miracles and believe that your wife and my husband are both Tarceva miracles in progress. Your wife is lucky to have you in her corner! Praying for you both. Take care.

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You are being a great advocate for your wife...keep up the good fight. We left our first oncologist over his attitude and we have one now that is wonderful. Hang in there Bill and all our best wishes to your wife.

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Bill,

First -- I applaud your strength and courage in being your wife's advocate. I wish everyone had someone like you in their corner!

We went through something very similar with my father. On 3 separate occasions we were told by 3 different oncologists to "take him home and let him die." One doctor actively recommended that we remove Dad from the ventilator to let him die, even though there was every indication that the cancer had NOT progressed and was, in fact, shrinking. The reason he was on the ventilator is a whole different story and was related to unnecessary medication and not the cancer.

I am going to use the word: euthanasia. I have come to the conclusion that there are those within the medical community who actively euthanize terminally ill patients, quietly and without informing the patient or the family, by giving recommendations that they know will likely shorten life. That appears to be particularly true with elderly patients.

My brother had a friend die recently, and I'm going to quote from an e-mail I received from him:

"I fear doctors basically euthanized my friend Jerry ten days ago. He was Dad's age (78) and a lifelong smoker, but had no cancer, no heart problems, and no known disease. He was overweight and had reduced lung capacity because of the smoking. Two weeks ago he suffered a recurrence of a lung infection, for which he previously had been successfully treated with IV antibiotics. (I saw him in the hospital; he made a full recovery and was alert and comfortable.) This time, however, at a new hospital with different doctors, he was given morphine, ostensibly to relieve his 'distress.' Within a few hours thereafter he died from respiratory failure -- big surprise.

If you or I had a lung infection, I'm sure we would have some distress, but somehow I doubt we would be given morphine for it. But then, unlike Jerry, we aren't elderly people who have multiple health problems that cannot be reversed and who have no caregivers at home and no one who will challenge doctors for them.

I think perhaps some doctors are so technically-focused that they see people as machinery, and so even people like Jerry are just worn out machinery, ready for the scrap heap -- let's free up that hospital bed for someone with better working parts that we can 'fix.' They don't even ask whether some of those people, like Jerry, had been mentally alert, without chronic pain, and capable of enjoying some things, including conversations with friends, before the event that brought them to the hospital."

That is harsh, and I expect I will make some people angry by posting this, but I want to at least wave a red flag. I do NOT believe that doctors are evil or mean-spirited. I believe they deal with death and dying so often that they truly believe what they are doing is in the best interests of the terminally ill patient. I also believe there are doctors who believe that medical resources should not be "wasted" on patients who cannot be cured.

This is an issue that needs to be discussed openly and constructively. We need to know what is happening so that we can deal with it as we choose, and not have someone else choose for us against our wishes. If the patient (or the family in many cases) believes it is time to stop the fight or stop the suffering, fine. But that should NOT be the decision of any medical professional.

Pam

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Bill,

I sympathize with your issues on health care and thank my lucky stars that I've got some good doctors. Your wife is very lucky to have you to speak up for her. It's too bad that this has to be a struggle when she's facing struggle enough.

Cindy

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Bill, I am sorry you and your wife have been subjected to this type of medical idiot/idiots.

This happens all too often to too many people.I am not a vindictive person by nature but I do believe that what goes around comes around.In the end those undesirables will get theirs.Unfortunately that doesn't help us that need professional services and compassion now.

I truly hope the tarceva continues to help your wife.I also hope you manage to find and retain true good compassionate medical professionals.

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Bill,

What a rotten thing to have happen. I know there are people out there that definitely do have the attitude that "they are going to die anyway, so why bother." That's sad, but it is a reality that we need to deal with.

Our son got some extremely crappy treatment, too, in ER about 6 weeks ago, so I know it happens.

I'd like to speak to Pamela's post. I think I saw another post similar to this today that she put on another thread.

I'm personally not offended by what Pam stated about these issues. I do think, however, that the cases of this happening are very, very rare. I would like to try to comfort any fears anyone on this board might have after reading about such things happening.

Pamela is, of course, probably right that these things sometimes do happen, the same as things that have happened to Bill and his wife have happened. Sometimes people have incredible horror tales of doctors (i.e., Elaine, SDianneB, etc.)

I would just like to encourage everyone to be alert and if you can't be alert for physical reasons, be sure you have an advocate to monitor your care. But all in all, I think most of you are pretty safe and don't need to worry about you or your loved one being euthanized against your/their will.

Bill, thank you for keeping us updated on your wife. I pray for her and you daily.

Love,

Peggy

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Bill,

My guess is your wife is doing better because of you and the intense dedication she sees on a daily basis. You advocating for her and appropriate care is a gift.

You are correct in every statement you make.

My husband was in the Er a few years back and was quite ill. The Doc came in and gave us both a bunch of crap because Mike admitted to smoking some pot a week before at a dinner party. We thought it was smart to tell the truth because something serious was going on. This Doc was so out of control. He yelled at us, said Mike had a drug problem w/ he doesn't (he hadnt smoked in years) and was just an *ss. I scooped up my husband and drove him to another Er where we again, told the truth. He had menenngitis (sp) and was very sick. The ER Doc there appreciated the honesty and got a plan together w/o being judgemental.

2 years later that shi_ of an ER Doc was in our local paper. he was busted for Oxycotin. He was writing himself and wife endless scripts. He is actually in jail.

The moral of the story is we are dealing w/ humans that have many faults, as we do. Go w/ your gut, push the envelope for what you believe. You only live once and I am not trusting it to strangers that suffer from the same things we all do. They are not Saints, they are people.

Jen

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Bill, I am so sorry you have to fight the system as well as the disease. We have been fortunate in not having the same experience as you. Yes, we have to prod at times, but things get done in a timely manner for Lucie. It is hard enough to fight the disease itself, but adding on the uncaring system is too much. I pray you the strength to persevere. Don

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I can't let this subject pass without putting my two cents worth in. First of all I want to thank you Bill for starting this conversation. I know only too well what you mean about that attitude, it took my Johnny's life. He was verbally abused and harrased not once but 4 times because he refused to sign a DNR. That is just the tip of the iceberg.

Thank you Pamela for having the courage to address Euthanasia. I just want to add one word to that the real name is Involuntary Euthansia! I know this is a subject that no one really wants to discuss. No one wants to believe that doctors would do those things. Johnny died because I was so nieve that I didn't believe it either. I let things get past me that I should never have. All because I was too trusting.

I didn't believe it until I stood with him holding his hand while he died. I sat with him for three hours after his death and that is when the questions started. I started remembering the lies we had been told and the things done to him that made no sense, things I should have questioned but I didn't because I just couldn't believe that doctors would deliberately take someones life, someone who was willing to face whatever came along to have the chance to fight for his life.

When I started researching the medications he was given and learned that all of his symptoms that last day were signs of a drug overdose I had my eyes opened. There was even a discription of the Myoclonus (violet jerks of his arms) and it told that it was an adverse reaction to Morphine and Vicodin. I wasn't satisfied with what I found on the web so I went to the library and read from the Physician's desk reference. It clearly states that when those symptoms are present a drug overdose should be the first thing suspected and treated for. They didn't make a mistake. They knew exactly what they were doing. A ten year old child could have found that out.

Two things really brought it home to me. That attitude and what doctors are really capable of. One was when I questioned the pharmacist on the Washington State medical board about them giving him medications that are warned against for someone in his condition and about them mixing medications that warn they can be deadly when mixed. His response to me was "when a person is diagnosed with Lung Cancer they are considered terminal and all precautions no longer apply". Just how many deaths would be avoided if those precations did still apply? Deaths that are blamed on Lung Cancer and feed the statistics that feed that same deadly attitude?

But the real eye opener for me was when my complaints against the hospitals that killed him were denied. They didn't deny one damn thing that was done to Johnny. They just excused it because he had been diagnosed with Lung Cancer!

I only wish that someone would have warned me. I only wish that I would have had someone tell me that those things do happen and more often than anyone thinks. Maybe I would have taken my head out of the sand and Johnny would not have died and neither of us would have had to go through the living hell they made of his last day.

I have come a long way but I still live with those images and those regrets every day of my life!

If you want to learn more about this look up Bioethicists and Futile Care Policy. You may get an education that you don't expect.

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Oh Bill,

I just can't imagine what you've been going through. While I was dx at stage IV & given the "not a cure" speech, I was still given the option to fight to see another day. Frankly, my life is so beautiful today because of some very caring people & a radical attitude adjustment on my part, I just couldn't imagine not having been the choice to persue treatment or not.

Honestly, these "professionals" whom you & your wife have had the unfortunate experience of encountering during this journey should lose their licenses.

Please know that you are both on my "A List" for prayers.

May God bless both of you & put only people in your path that are willing to assist rather than hinder your progress.

Hugs & prayers to both of you,

Melanie

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Peggy, I know from your posts that you are a kind, loving person, and I know my post must seem terribly cynical and exaggerated. For someone with your heart, it must seem impossible that caring doctors and nurses could participate in ending a life early. I wonder, though, if your perspective is based only on your faith in people.

Before my Dad was diagnosed with lung cancer, I would have agreed with you. I can only speak from my experience and my research, but even Sharon's Dad's oncologist did not deny that the morphine may have speeded up her Dad's death. He just said it was the right thing to do.

The attitude I've experienced and read about doesn't appear to be, "Hey, let's kill this guy." It's closer to, "Let's medicate this terminal patient so that he doesn't know what's happening to him, and, yes, the medication will likely make him die sooner, but that's a blessing."

I want to repeat here: This discussion is NOT about pain management. If a dying person is in pain, it really doesn't matter if the pain medication ends it sooner. Stopping the pain is the most important thing.

However, I was told directly by two different doctors on two different occasions at M. D. Anderson that morphine is prescribed for lung cancer patients when the cancer has progressed to the point that treatment is stopped -- WHETHER OR NOT PAIN IS PRESENT. The recommendation for my Dad -- and I was told by the Pharm.D that it was standard procedure -- was to take morphine every 8 hours around the clock -- even though Dad insisted that he was not in pain and was not having any breathing discomfort.

Of course, I asked why, and I was told that it was important to have the medication in place BEFORE pain started. The oncologist from M. D. Anderson (the top cancer hospital in the U.S.) also prescribed 11 other medications for Dad -- on top of Decadron. And we trusted the doctors who told us to give him those medications. We had faith that they knew more than we did. We didn't check for possible drug interactions -- these were professionals; surely they knew more about it than we did.

The result was pure horror -- the myoclonus Lillian described, as well as a list of other indescribable symptoms. The hospice nurse told us that it was "terminal agitation," and that we should give Dad more morphine so that he could "die easier."

But we knew that the cancer wasn't causing this because we had just reviewed MRIs that confirmed that the cancer was stable. So we started a desperate research to figure out what was happening. When we began reading about "delirium" and the causes, it became very clear that this was caused by medications, not cancer. Unfortunately, by that time, Dad was dehydrated (because, after all, you don't give liquids to a dying man and he was jerking around so much that it was difficult to get liquids in him).

My brothers rushed him to the hospital -- against the advice of hospice -- and insisted that he be given IV fluids and treatment for delirium. The staff agreed, and the "terminal agitation" stopped. Unfortunately, Dad had a lung infection that had been left untreated and undiagnosed because he was "dying", and he went into respiratory failure. That's when we agreed to put him on a ventilator.

After a week on the ventilator and with IV antibiotics, we were given "the talk." We were told that it might be in Dad's best interests to shut off the repirator and "let him go" rather than going through the weaning process. You can bet we asked a whole lot of questions then. We asked how that would work, and we were told that he would be given MORPHINE so that he wouldn't feel a thing. Then we asked, "But wouldn't the morphine repress his respiratory system and make it harder for him to breathe without the ventilator?" And we were told that, yes, it certainly would, and that was why it was being given. We sat for almost an hour with this doctor asking very direct questions to make sure we were hearing what we thought we were hearing, and we were given very direct answers. He didn't use the word euthanasia, but it was clear that he was knowingly recommending just that. Unequivocal. Because we asked direct questions, he gave direct answers. If we hadn't asked, he wouldn't have told us.

I was so shocked that I literally ran from the hospital, jumped in my car, and drove 679 miles nonstop back to my house. I made it in less than 10 hours. I then spent the next three days reading everything I could on ventilator weaning, morphine, fentanyl, rehab, and euthanasia. My brothers and I then decided to give Dad a chance to live, and we instructed the doctor to go through the ventilator weaning process. Dad came off the ventilator quickly and easily. Two days later -- when all the fentanyl was out of his system -- he was completely alert and aware.

THEN there was difficulty weaning him to solid food because of his time on the ventilator. He worked so hard just to swallow thickened nectars and Ensure, but he wasn't getting enough fluids and we watched while his urine became darker and darker. Finally, I asked the oncologists if we could put Dad on IV fluids while we weaned him to solids. The oncologist looked me in the eye and told me -- and this is a quote, "No, I don't think we should do that. He is terminal, and keeping him hydrated won't change the outcome." In other words, why bother? He's going to die anyway. The other oncologist who was with him saw the shock on my face, and after the first oncologist left the floor, she ordered IV fluids.

Dad lived almost 5 months after that -- 5 months! If he hadn't had the horrors of the medications, I believe he could have lived longer.

At one point, I had heard so many different oncologists and hospice workers urge us to give Dad morphine that I quipped to my brothers, "I wonder if these guys get a kickback on morphine sales."

As an aside, throughout the process with Dad, we had multiple discussions with multiple doctors and nurses because Dad refused to sign a DNR. This was at two different cancer hospitals, and they would not take "no" for an answer, but just kept bringing it up over and over. My younger brother is an attorney, and he had in-depth discussions with Dad about end-of-life care. Dad was very clear with all of us that he wanted us to make those decisions for him, not the doctors.

My Dad did not suffer at the end, but I can't tell you how many guilt trips we were given because we did not give him morphine every 4 hours. I still don't understand that because there was only about 2-3 days when Dad experienced any pain at all, and we brought that under control very quickly. He wasn't on oxygen until the last few days, and that was after he'd slipped into an unconscious state.

Will this scare someone? I certainly hope so. In the same way that having unprotected casual sex should scare someone. In the same way that smoking should scare someone. In the same way that drinking and driving should scare someone. Not everyone who has unprotected casual sex gets AIDS. Not everyone who smokes gets cancer. Not everyone who drinks and drives has an accident. But we get the message out so that people can make INFORMED decisions about possible consequences.

Read prescribing information on medications. Ask every question that enters your head about the care being given to your loved one. Read everything you can read on everything impacting your loved one.

This isn't paranoia. The doctors aren't "out to get you." They are doing what THEY think is best. Unless you tell them otherwise, they will assume that you are giving them full authority to do what THEY think is best for your loved one. They may be good people with good intentions, but those doctors don't know and love your husband or father or mother or wife the way you do.

I won't post again. It took me a long time to finally work up the courage to do this, and I'll leave it here. I just wanted to give everyone something to think about.

My best wishes and kind thoughts to all of you.

Pam

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Pam,

I'm sorry you had such a horrible experience. I agree that this happens to some people and I've read some stories right here.

In our case, my dad entered the hospital and died 11 days later. There was no hospice or "in between" time.

The medical staff did say that the doctor ordered morphine/ oxycontin as needed for pain and it was our job to let them know when we thought dad needed it.

When I told the nurses that he did not have alot of pain normally- they did not push it at all.

I also told the head nurse that I had read somewhere that morphine causes respiratory failure- and she acknowledged that in large or frequent doses- it can.

But morphine, taken for pain in patients who have had surgery or have bone mets, do not.

I told the nurse that dad took 2 hydrocodone every four hours at home because of the mets to his spine and shoulder and that was all----and we would keep the dosage at that. And they complied.

The last two days, my dad became very agitated and moaning- it was clear to me, the person there who knew him best, that he was in intense pain, and it was then that the pain dosage was increased.

When he entered the hospital the last time and we learned he had mets throughout his skeletal system, brain, shoulder, liver and his body was beginning to shut down- we were told he had less than 24 hours to live.

He lived 11 days- long enough for all our family to visit him that lived out of state. He was not conscious after day 3- but I know he heard us. He did not die in 24 hours like predicted- or because of the pain medication that was given- but in 11 days when he was ready, and God was ready for him.

They continued giving him antibiotics and fluids and everything else he needed to keep him alive and treat symptoms that could arise. Becuase they kept treating him, I always had this naive hope that he would just wake up and everything was going to be ok! Miracles happen, even medical professionals have seen it and stranger things have happened.

I know that there are medical professionals like you describe, and our best chance in this world, in anything we do- not only our healthcare, is to be our own best advocates. But I also know of and have experienced educated, kind and compassionate medical professionals out there who really care about their patients.

Sometimes, depending on where you are, you have to keep looking to find the right ones- sometimes it is a matter of educating yourself and sometimes it's just about accepting reality.

When my dad didn't get better- with everything that was being done- I accepted the reality that this was definitely the end- and spoke to him alot and held him and told him how much we loved him.

If he had died in 24 hours like predicted- I wouldn't have had that time. I believe the hospital, and their efforts to fend off infection, keep him hydrated and alive- like any other patient who didn't have cancer--allowed him to survive longer than if we had brought him home.

I thank God for his medical staff, doctors and hospital and I am greatful for the compassionate volunteer doctors we have here.

I'm sorry you and your family went thru what you all did.

I pray that no one else experiences anything like that again.

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Brovo Pamela. You just stated what I have been trying to get across for over two years. Just imagine what a difference it could have made if we would have had someone as insistant as we are? About not posting again I can certainly understand your frustration. Been there done that but maybe in time people will begin to appreciate what we are trying to do :!:

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Pam/ Lily

All of us appreciate what you are trying to do- Educated and make patients aware that this can happen.

Thank you both for that.

I really don't have alot of faith in people I don't trust- and I didn't trust these medical professionals before I got to know them and before they proved themselves to me.

We were lucky.

You must always advocate for the care you deserve.

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I also dislike the doctors that you see in the ER and start to tell them that your there for severe pain (or whatever) and start your story "I have Stage ....... LC" and I feel like they look at you like "oh your going to die anyway or it's all your fault". I've had two of them, you could see it in their faces and for just a moment the pain stopped (the reason I was there) and I was ready to kick their butts.

They treated me fairly and did all the tests and fixed me up and sent me home but the look/aatitude was totally uncalled for.

And ehy can't when you are not allowed out of bed due to pain meds or heart monitors (whatever) that you can't get a Nurse to get you a bed pan?! I think my Mom/Husband have changed more bed pans then the nurses!

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All who have posted have been "right" to do so. It's important to know what CAN happen. And it's important to know that it doesn't always happen....

But knowing that the potential exists for it to happen means we can be on our guard. Knowing all of this is a big part of the reason why I am so reluctant to take the pain meds and why I allow myself to take them only for short period of time and a very lose dosage.

I am speaking for myself, and to those who will be with me at the end of my life, and no one else. I am not making judgements about anyone else who has been in a like situation. I wasn't there when others faced their situation. So please don't project my case into your own. I am not projecting mine onto you. But I make it clear to absolutely everyone that I will not be "helped" with a drug overdose. When I reach the end phase if anyone gives me enough meds to knock me out then everyone needs to know that they are doing so for their peace of mind and benefit...not mine. And if they do so it will be against my express wishes. Unless I slip into a NATURAL coma I will be lucid when I say goodbye to my loved ones and hello to God.

This is such a tough situation. A living will/advance directive is a document that is supposed to detail what I want to happen if I reach the point where I cannot speak for myself. It should not be a free license for someone else to pull the plug...but that is fast what it is becoming. And if it happens to me I hope with all my heart that there will be someone out there who cares enough about ME to make a very big and public uproar.

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I have never really given much thought to this issue or at least to this extent. But now having read these posts I realize why myself,mom,grandmother and every other person in my family has always said my grandfather did not die of cancer but from Morphine. I can understand why now when moms dr tried to give her morphine when she was having pretty bad pain a few months bad that Mom freaked out and went crazy. She wasnt ready to die and felt that being given morphine the dr was doing just that. I tried then to explain to mom that its different when taken for pain when you are alert,aware and know what pain you have.

She never did take the pills, I have to agree that drs write people off when there is nothing else that they THINK can be done and just dope them up so they dont have "pain" and know whats going on. How many people know that morphine represses the respitory system? Im sure most everyone thinks of it as a strong pain med. The average Joe would have no idea of its other use.

I better stop now, this is just to much......

Kim

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What about for those of us who do not respond to morphine? Morphine does nothing for my pain, during all the surgeries I have had it had been tried and other meds where used because morphine just didn;t help.

At that high a dose will it work or what other meds are used at the end? Anyone know?

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BethWhen Brian lost his right hand in an industrial accident the only thing that touched his pain was dilaudid. It is an old time med that literally saved his sanity. Morphine did not work for him, either.

.................................You are not to worry about that, now...........you are fighting a really good fight........................Just put info in your hip pocket and assume you will not need it for a very very long time.

Much luv and hugs, Beth

Pat and Brian

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I'm only 57 and last year (May) when I was in the hospital being

treated for pneumonia/oxygen deprivation. I had them put the IV in on the top of my right hand (I'm right handed) and I could put my hand

under the covers and I would awaken if anyone toched me or came near

me at night. Low and behold at 3:00 in the morning I woke up when the nurse came in to give me a shot in the IV. She was sitting in the chair

very comfortable starting to inject something into the IV. I jerked and said, waht are you doing. Now I had had a rapid pulse rate for two days.

She said the doctor ordered (blahblahblah,name of med) to slow your

pulse down. I started thinking, why at this time of night. I made her get

out of my room and ordered her NOT to EVER come back into the room while I was in there. It is when a patient is vulnerable and can't or they

think can't fight back that this happens. My father was OD in 98 with meds

and I called the doctor on it and also the Attornry General in Phoenix,AZ.

They came out to investigate. This is also another story. He died. I could

have died from whatever it was, they were going to give me. It was to

SLOW down my heart rate. Why at night and not while I am awake and alert. Why didn't the attending hospital doctor come in and talk to me 1st.

This was NOT my regular doctor. It was a general physician who worked for the hospital. I don't trust a doctor's knowledge or ethics any more. They are so cold and uncaring. They also wanted to give me blood thinners and I have no clots. What's up with that. It's bad enough we have to deal with a disease, let alone the disease in some of the doctor's and nurse's minds.

Stay on your toes and try to be alert, try and be your own or have a

close family member there with you who questions EVERYTHING

.....

God Bless us all and prayers,

Karen

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