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  • Why do they do it?

    Why do Doctors give the most pessimistic predictions to the family members of a patient with a SCI? I understand in some cases the prognosis is grim with very little chance of improvement. But in the majority of cases, they just don't know what the long term outcome will be. In the first few days after a loved one has such a devastating injury, it is cruel to be informed that they will never ___(fill in the blank___) again. I can understand not wanting to give false hope but don't give out false despair either.
    My husband had a mountain biking accident last Sept and I was told he was a complete C3-4 ASIA A Quad who would never walk and may not even breathe on his own. The first few weeks are hard enough with out the added burden of such a doom and gloom prediction. I wish I had been told the truth, which is "we don't know what function will return this early in the injury".
    Today he is a long way from being independent but is walking with a walker.
    So there!!! You Negative Nancy Doctors

  • #2
    Honestly?

    Ignorance. Nothing more, nothing less.

    You have to wonder.... what other things did they say to you, confidently, that were also not true.

    I find that most doctors who take care of you in the hospital after a traumatic accident/spinal cord injury do not follow patients long term after these accidents. They don't see you 6 months.... or 6 years later. So they honestly have no idea how well people do. All they know is that the vast majority are not walking by the time they leave the hospital and are transferred to rehab.

    They don't know how to examine a patient properly who has a spinal cord injury. They don't know what ASIA means, or even the true definitions of incomplete/complete and that the vast majority of people with incomplete injuries will walk again. They don't know that spinal shock even confounds this initial diagnosis of incomplete/complete injury and in my mind makes the initial categorization irrelevant. They don't know what neurogenic bladder or bowel is, or what should be done for it.

    In our case, while in the hospital a neurologist told my father he would never walk again..... a surgeon told him he would need a colostomy if he continued to be constipated.... a plastic surgeon told us he would get to rehab faster and improve more quickly by letting them amputate his legs. When finally a physiatrist came to see him, she didn't examine him, and left no recommendations for the team. Not even that his legs were worth saving.

    Fortunately, I knew all of these answers were wrong. This made hearing these statements even more disturbing. And of course for my father.... devastating.

    What I strongly recommend to any of you that had similar experiences.... is at some point, write/call/visit those doctors again. Let them know how wrong they were, and the negative impact of their statements. I am certain that discouraging statements from doctors lead patients to give up, stop rehab, fall deep into depression, as well as cause insurance companies to stop paying, and other doctors to stop treating. If you tell these doctors what they did..... and let them see you now..... I suspect they will never forget you, and will be less likely to repeat these mistakes with future patients.

    And regardless of what our outcomes may be..... there is always hope. It is never worth crushing all hope.

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    • #3
      Yeah, well because a lot of times they are correct. My surgeon told me I would never regain any function or feeling again.. and he was right.

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      • #4
        i am sure for every patient that does walk out under their own power, there are dozens that do not.

        when i was injured in 1985, they told my mom i'd be brain dead. clearly not true. when i did wake up and was speaking they said i wouldnt walk again. that was true. but back then, kids did not survive the kind of injuries i sustained. so i really can't blame them for being negative.

        i'm an incomplete but i haven't walked in nearly 27yrs but for not walking i am doing pretty darn well if i do say so myself lol

        i find that drs are often a pessimistic lot(especially those dealing with traumas like in the er. they also have twisted senses of humor) yet they come back to their jobs and take care of their patients as best they can(and as stated above, often without really having good knowledge of what the heck goes on long term with SCI but i have no idea if they care about anything other than keeping their patients alive so that they can get to that long term phase)

        tho i agree, they really should just say something like "lets hope for the best and prepare for the worst" or something to that effect.

        i am very glad that your husband is one of those lucky few with that injury level to get such an amazing amount of return. i wish you all the best!!!
        "Smells like death in a bucket of chicken!"
        http://www.elportavoz.com/

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        • #5
          I always wondered the same thing. Why is it so damn hard to simply say "we don't know"!! A-holes!!

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          • #6
            Bedside manner is not a "class" in Med school.

            They honestly don't know how to interact with patients.

            When I had my accident, my surgeon was on his last leg and had been up for many hours. They had trauma after trauma come in. A plant explosion in a city nearby....and I came in from an hour and half west on a stormy morning. He was an ass to me and my family. I guess they get tired of seeing what they see.

            On the other hand, at another time, in another hospital, the doctor wanted to amputate my leg and told me there was no other choice. I signed out against medical advice. I still have my leg 20 years later. I just wrote the surgeon who saved it.

            I don't understand why they just don't say "I don't know" and give a worst and a best. My surgeon told my family the same that I would never walk again but he went one step further. He told my mother that I would never be able to care for myself or my infant daughter by myself. I am a lower injury (T12-L3) so that was a bit of a stretch. Walking was one thing but lots of people in wheelchairs take care of themselves daily at that level. He was just being an ass and scaring my mother to death. He was in a really horrible mood that weekend.
            T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

            My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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            • #7
              My Doctor came into the room after surgery, asked me to move my toes. His face said everything. I'll never forget that moment. I never asked him another question.
              Worst day of my life.
              That chapter is over.
              Next!

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              • #8
                Originally posted by hlh View Post
                What I strongly recommend to any of you that had similar experiences.... is at some point, write/call/VISIT those doctors again. Let them know how wrong they were, and the negative impact of their statements. I am certain that discouraging statements from doctors lead patients to give up, stop rehab, fall deep into depression, as well as cause insurance companies to stop paying, and other doctors to stop treating. If you tell these doctors what they did..... and let them see you now..... I suspect they will never forget you, and will be less likely to repeat these mistakes with future patients.
                I particularly like hlh's above quoted advice as a way to effect change.

                I'm guessing that doctors feel like they should know because they are doctors. When, in fact, it's impossible for them to know the longterm outcome for a particular person.

                From a patient's perspective, I'd much rather they choose the humility of "I don't know" verses the arrogance of pretending to know. That said, I'm fine with them saying "statistically speaking, most people with your level injury never (_____) again" but they shouldn't rule out the possibility of beating the odds.

                Just my opinion.
                Wheelchair users -- even high-level quads... WANNA BOWL?

                I'm a C1-2 with a legit 255 high bowling game.

                Comment


                • #9
                  My experience is opposite. The surgeon came in after surgery and told my sister, my daughter and I that my husband's surgery went well, and part of the words we all recall were that in about 18 mo he would be able to stand with a walker.
                  At the time it sounded devastating, we never imagined he would not move anything below his shoulders.
                  The next day when friends, family and some co-workers were there he told us the same thing.
                  I later asked the social worker if somehow I misheard or had tricked my mind into not hearing something and she said she was there too, and did not understand how or why he could predict such a positive outcome.
                  At Craig several weeks later the doctors praised the surgery and care-but I still wonder why the surgeon told us that.

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                  • #10
                    I would like to go back to the Hospital and let them see how well he is doing. One of the nurses there was telling me that they never get to see patients once they leave the ICU. They should make a point to investigate the outcome statistics of the people they treat....nice thought but not likely to happen.

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                    • #11
                      We did go back to ICU and they were so sincerely happy to see us.
                      Dave was driving his chair with sip n puff and showing off his tilt etc.
                      The nurses and RTs were happy to hear his voice and the fact he had clothes on and we were living in our community.
                      They were all rooting for him to get accepted at Craig and I had sent them a postcard from there.
                      We never did see the surgeon again, but know he was involved with a high profile law enforcement officer in our area who was shot and had SCI and TBI.
                      Maybe he did not understand complete and incomplete.
                      But hey-if you can show them wrong go visit!
                      I promise they will be happy to see you.

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                      • #12
                        I did not want to touch this post, but I could not resist for these reasons as a physician:

                        1. Valid points are made; giving hope to a patient can sometimes give that extra motivation to work harder in rehab (I do believe as physicians we have an ethical obligation to tell you the facts--good, bad, and ugly) But, we can do it with better bedside manner.
                        2. Depending where you are injured and what trauma center you are taken to; your doctors may have the necessary knowledge to accurately access your injuries-- so I do not agree that all doctors have no idea what they are taking about long term.
                        3. The idea of writing the physicians and surgeons that treated you is excellent. Just like a kind word (hopefully you would send kind and encouraging) goes a long way for you-- it does for physicians as well.
                        4. Anger perhaps should not be directed at your doctors, remember the body is very complex and we do just "practice" medicine with informed decisions, case history, and tons of education.
                        5. Never be afraid to question your doctor, or make them take time to answer questions. If you don't understand or simply want more information ask and make them answer to the best of their knowledge. Keep in mind you may not like what they say, but there is an ethic obligation to take time with you so you make informed and reasonable decisions.

                        Lastly, physicians are not always correct. They are only human and the body can throw curve balls to you and them alike.

                        But, do keep in mind and show your kindness to the nursing staff, because behind every doctor--typically there is a good nurse and those nurses can prove a valuable resource and advocate in your care.
                        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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                        • #13
                          They told my parents I would never walk again, but I walked out of rehab. I thought the doctors had been better to say they didn't know, but a friend of mine broke his back and they said he was so lucky because the break was so nice and he would walk again and after 6 years he is still in a chair.

                          Happily they did not tell me anything and in my case it was so stupid to say I would never walk since they never found out the diagnosis and still haven't.
                          TH 12, 43 years post

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                          • #14
                            Because I could move my toes after surgery I was given false hope. I would much rather had been told an honest, "We do not know. Every injury is different."

                            My cervical laminectomy was sheer hell. Do they give more than a local now? The neurosurgeon rode up in the elevator with me and expressed his sorrow for what I had gone through and how he hated having to perform that surgery. I was touched and have never forgotten his compassion.

                            I was injured in 1964. One of the ICU nurses gave my 19 yr old husband the key to her house so he could sleep in her guest bed when he drove the many miles over from the university to see me. Thirty years later we found her in a rest home in the state we had moved to and were able to visit her. She kept repeating in amazement, "You're still alive!!"

                            1964 C5/C6
                            C5/C6

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                            • #15
                              This is a tough question. In the early days of my nursing career, I worked an acute neuro rehab unit. Patients and particularly families, at the early stages, are not satisfied with an "I don't know" response regarding prognosis. It seems the limbo of an open ended prognosis is, for many, very difficult. Now, of course, we have the Internet. With just a few "key words" gleaned from a conversation with a doctor, families fly to the Web to fill in the blanks.

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