Do we expect too much?

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saint
saint Member Posts: 1,877
edited June 2014 in Palliative Therapy/Hospice Care

I have felt for a long time that my perspective regarding our healthcare providers may not be popular. I want to see if anyone holds my views:

Our caregivers are only human & can't help but make mistakes. If the person INTENDED to help & a mistake was made that was not DELIBERATE or NEGLECTFUL should they be sued? Does any other job hold that kind of responsibility? Must they be super-human or choose another profession?

Now add to this one more facet: They are not super-human & I believe medicine is less a science than an art! There are no guarantees! Why does a chemo works for one person & not another? I think we need to be more realistic about our expectations & stop the child-like trust that many have when it comes to medicine. It's all a crap-shoot isn't it? Do we expect too much from medicine?

OK--now you can feel free to vent your spleen on this thread. I think the real reason for many issues like this is that it is only natural that the venom of our cancer needs a target & the caregiver is standing in the cross-hairs!

Be well & stay strong 

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited August 2009

    Saint, I whole heartily agree. I really like my Doctors, but they are human, they are overloaded and they do the best they can.  It is a huge responsibility to have someones life in your hands. It is a crap shoot. What works and what doesn't. 

    I get so annoyed with the folks that think there is a CURE for cancer, but 'they' are not sharing it because of $$ to be made. That is just pure BS.

    I am amazed that some patients don't push for more information. I push my doctor. Maybe not as hard as I should. The response I received from my latest scan was very agonizing. But I understood what can happen.

    Our culture has changed. We want to find Blame for our misfortune. Sh*t happens. The energy spent on attacking the medical profession is not time well spent.

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  • idaho
    idaho Member Posts: 1,187
    edited August 2009

    I have the same unpopular opinion--  Dr's are NOT god's and we should put our whole trust in everything they say- we have to study it out and know what is best for ourselves.  There is a reason the Doc's say they are PRACTICING medicine... and for that reason if they do something wrong then we should take it in stride.   They are not perfect.   Tami 

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited August 2009

    Saint - deep down I agree with you - however, it truly depends on what KINDS of mistakes a doctor makes. Did they follow standard protocol (in my case, they did not and thus I ended up with a MRSA staph infection.......but after talking to two lawyers and two doctors, I chose not to sue - I'd rather move forward than waste any more of my time and energy in a negative place.) Were the doctors negligent because perhaps they showed up for surgery DRUNK (very unusual, but it HAS happened.) Are they practicing with the correct licenses (some doctors aren't even licensed for the procedures they advertise!)

    I agree we all need to take responsibility and advocate for our own health and well-being, which involves researching our doctors' credentials - however - there are patients who have truly been injured due to the errors of doctors - doctors who do NOT care about their patients and are really out for financial gain. So we can never let our guard down and justice must be served to help innocent people who have been harmed by medical malpractice.  Frown

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2009

    Unfortunately, until we have a serious dx such as bc, I think few of us realize the wide range of abilities and talents amongst doctors.  While success with a particular course of tx cannot always be predicted or assured, especially with cancer, which can be frustratingly individual to each patient, that isn't always the problem with bad or mediocre docs.  Other problems I've run into and wasn't knowledgeable or experienced enough at the time to pick up on have included ego issues (BS operated without a clear MRI because she knew exactly what she would find -- except she was wrong); an onc who was stuck in familiar tx recommendations when there was something newer and better available; and a PS presenting me only with the type of recon they offered, and framing that option as best for me, when, in fact, there was a far better option, which I was lucky enough to find.  None of these are close to malpractice, but individually and especially taken together, they = far inferior tx over what I (thank God) ended up having by changing medical teams.

    So, I think a doctor's responsibility goes beyond intention. To be excellent, health care should include such things as a team approach (not one doctor knows it all), keeping up on the latest research and being willing to incorporate it into your practice; and being honest enough to share information on protocols that you may not offer, even if it means losing a patient to a more skilled surgeon or facility.   

    But, all that aside, I agree that even the best doctors won't save everyone all the time, and that has nothing to do with incompetence, but just the fact that the progression of an illness couldn't be controlled with even a team of the best doctors using the newest and best therapies.   Deanna 

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited August 2009

    On a very basic level, I get frustrated at the number of posts we see, complaining about the length of time for referral appointments, or the waiting for the results. Yes, we all know it's stressful, but there are only so many hours in each day, and not everyone can be rushed through the system for one reason or another. The sheer uniqueness of our cancers makes it all so much more difficult-not only are the systems and the professional over worked, they have to deal with an illness which will not behave as expected in many cases! I was incensed once, reading on another bc forum, that someone was furious that she had heard by phone, that a lump was benign. (I should say that in the U.K, this is most unusual-all test findings are given to the patient at the follow up consultation). So.....even when imparting good news (which most of us would celebrate), the poor medics got blasted for not following protocol. At times I'm convinced the world has gone mad.

    So, yes, I do agree that we expect too much, and often right at the very beginning of the process.Or does it come down more to the type of personality? Insecurity goes hand in hand with dependance-and when something goes wrong, as often it can,for very many reasons... well let's find someone to blame. I admit that I'm a trusting person by nature, and want to believe everything my onc tells me-but it doesn't stop me questioning, checking things out for myself. With so many developments in the cancer world, we can't expect our oncs to keep abreast of them all (sorry, no pun intended!!) , and there will be times when mistakes/ommissions will happen. For example, my onc isn't particularly knowledgable about genetic cancers-and if it hadn't been for my investigations, I wouldn't be having the treatment I'm having at present. Time and again, I really feel it all comes back to an excessive workload, no 2 patients responding in the same way, and expectations from patients which can't be met on many occasions, which contribute to the overall problem.

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  • saint
    saint Member Posts: 1,877
    edited August 2009

    thanx all--y6ou pretty  much bear out what I thought!

    I have a friend who's lymphoma was NED cuz her dh spent hours everyday on the puter & took the info to her onc/team-----dh said,'He has 100's of patients but I have only one to do research for.& I can be specific........'  

    so yes, as long as WE accept OUR part in the whole team-thing we  should never end up in court----right?.......... 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Saint, thanks for this.  My sentiments totally.  People are too quick to place blame when there are so many differences; so much to learn and keep up on.  One size does not fit all and doctors are people first.  (malpractice excepted)

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  • MontanaHiline
    MontanaHiline Member Posts: 19
    edited March 2010

    I'm glad I came across these posts.  I was depending on a variety of medical personnel - all with their own skills, quirks & weaknesses to do the best they could for me.  Some things could have been done better but, overall, I'm thankful that they were there for me even if they weren't perfect.  The patient has to accept some responsibility for how the relationship works.

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  • pee
    pee Member Posts: 456
    edited March 2010

    Doctors PRACTICE medicine.  If it were a perfect science then we could hold them accountable for every mistake, every death that the 'were responsible' for.  We live in a medical world right now of amazing discoveries being made almost every day and consequently I think we begin to expect our drs. to be gods when in fact they are (most of them) everyday decent human beings who just want to do the best they can.  Our onc. have a particuliarly difficult job.  They are ministering to the needs patients of which many will not survive, or those that do must go through horrendous treatments to do so.  I do not know how many of them even begin to even be able to sleep at night.  I would never be able to get the patients out of my mind long enough to get a good nights sleep.  The internet has been a boon to people like us who can now use it to research and see options that are open to us.  We are not researching for hundreds of patients...just us, and that puts us in a position that even 10 years ago we did not have.  The ability to truly actively participate in our care.  If we chose not to exercise that right then that is our choice.  I prefer this new way.  I look back when my mom had lung cancer in the 70's and think if only I had been able to research for her and the new drugs and modalities that are available now were available then, I might still have her with me.  You can bet I would have done it.  Instead, what was done for her was accepted without question and there was not even a thought that went through my mind that maybe I should sue because she died due to malpractice.  She died because the knowledge and means were not yet available and it was her time.  Often times I think many people forget that it just might happen to be 'our time'.  She/he died before their time really is a dumb thing to say though we have all said it.  Our time to die is when it happens.  If you do not like or trust your drs. then there is a simple answer.  Leave them and find drs. you do like and trust.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

    This is the first time I have posted on this thread and i don't know if I am doing the right thing. I am really ok with dying. I just don't want to suffer. i don't know where to post this idea and i am not barnstorming on a soapbox-i have only mentioned this a few times with my pastor and such and the reaction has been that I am a lunatic to think about dying-that i must fight cancer-that is what is expected of me-HUH?! HELLO! i am learning that despite my beliefs noone in the clinical profession wants to honor them, even though my docs have failed me miserably at every turn. i chose surgery and first chemo for my Dad. Surgery left me with terrible wound infections and pneumonia that would not clear up. And one chemo damned near killed me. Iknew these things would happen but did them anyway for other people. why does everyone think that i have to bust my balls and that I MUST FIGHT CANCER. sorry-but i don't have time for cancer and am too busy doing other things-like gimping down to the surf when i can muster the strength now for saltwater fishing. I was a gonzo angler and out 12 hours a day pre-cancer. Post cancer i am so ill that i cannot do much-i even own my own art gallery and spend enormous time in my studio-not like i am bored or looking for a way off the planet. but, i am getting profoundly angry reactions from my 'gang' about my views on my cancer and my treatment or lack thereof now to Kanab. Utah. i have chosen to stop treatment. I have no doubt that i will die from either the cancer or the effects of the one chemo i had and damage done to my body and mind from that horrific event. NOONE SHOULD HAVE TO GO OR BE FORCED TO GO THRU CHEMO WITHOUT KNOWING THE RISKS. I was told i'd get it on thursday and be fishing on Monday-NOPE ALLERGIC REACTION-toenails fell out-hair-skin fell off-you name it.  i am preparing to move mind body and soul back to my old home in utah to ride out what is left of my life with old friends-far from my family home here on the outer banks. everyone keeps telling me i am depressed but i am not-as a recovering alcoholic, yeah i have depression, but it is being and has been well managed for years. i am sober 22 years, i have had the most incredible life that one person could ever have. I have done absolutely everything I have wanted to do and i would not trade a thing. My husband was killed when we were young and I long to see him again. I believe i will in another life. I knew i had cancer or something terrible a year before i was diagnosed (cancer in my body has its own energy) and i know the outcome of all of this. we all die-how do I do it with dignity and on my terms when something like cancer strikes?  i had a 'precurser heart attack' whatever the hell that is yesterday-my dad called 911- and the medics could not get a BP or a heart rate-i was awake enough to know it hurt like hell (my chest) and man, if that is the 'opening act' i do not want to have a real heart attack-like ever. I trust in God and Iknow that whatever happens, it will be OK as long as I am sober and true to myself.  i am so ready to move to the next adventure (i have worked hospice and seen amazing things) but i want to chose as much about the end of my life as i can. i had opted for no treatment at all for the cancer because i TRULY think this thing in my life is preordained (not in a judao-christian thing) and no i am not an athiest-but truly i only did one treatment because my surgeon and everyone else was so freaked out that i would opt not to treat. as a recovering alcoholic/addict woman, i am not healthy anyway. i certainly am not healthy enough to be dealing with cancer and with the SE's of crappy medicine and docs who think they are god. Now, gladly for me, the docs will not allow chemo or radiation after first chemo bec my liver functions from the old using days are so poor my body cannot process out the chemicals. Amazing i could do a ton of ACID, but my body won't do Taxotere, or anything else. So they are offering me is a double mastectomy and good luck-HUH-that was what i suggested to begin with and the same docs lost it. Does anyone one else feel like i do, that it is just ok and it is all the way it is supposed to be and cancer did not work the 'magic on me' and make me a pink ribbon poster child. i am not a 'susan coleman' rocks for cancer recovery! i do not want to suffer to the bitter end-i am single, no children, great support group, but no reason to hang on. i am not very eloquent in trying to explain this but man, i feel so very alone in my views and so rejected when i talk about them-so i just keep my mouth shut and i hate it. i hate not speaking my truth or being horribly blamed for my stand. i feel like i am being SO untrue to myself to try to do the 'rahrah' pink ribbon thing. yeah, maybe if i had a ton of money, i could run out and change the world-i am very poor and now on disability. ERRRGH, i hope i have explained this right and done justice to myself and how i feel about all of this. I am so content in my soul that i do not wear hats or anything-my bald head is fantastic (unless it is COLD) and i wear nothing to cover my head. I forget until some kid in Walmart makes a remark out loud. But that is how 'removed' i am from all of the bruhaha. I am just ready to get on getting on (not suicidal at all) just done with everything i have wanted to do. I so hope i have not offended and no critics please. Please tell me i am not alone in how i feel about this. Has anyone chosen not to treat their cancer or opted out of treatment? Actually, as i write this post, i realize that 'allies' don't matter (I mean all of you matter) But if i am the only one who feels this way, it is my truth and that is all i can hope for myself. i am hoping that if anyone out there truly feels like i do (no suicidal ideation please), they do not feel alone anymore after reading this. ((((BIG HUGS))) SV

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