Medical Errors: Acts and Omissions...

[Fay A.]

Okay...here goes:

I've told you folks a little bit about some of the things I've gone through both before and since my diagnosis. I've dealt with most of this on my own, and it's been hard, because I was ill, but also because I always thought of myself as a "nice" person, and nice people didn't argue, or disagree, or insist on getting what they wanted. And they NEVER questioned someone like a Doctor, or a Teacher, etc.

At some point I hope that we have a forum for dealing with problems associated with suspected medical errors and inappropriate delays in ordering and authorizing appropriate diagnostics and medical treatments. I'm not an attorney, nor am I a medical professional. This is a very GRAY area.... but the thing that stands out in my mind is that had I not thought ahead and both contacted my congressional rep and given her permission to act on my behalf BEFORE the appeal to my insurance company was denied (and done so in a way that I would not have been able to appeal that particular denial) I doubt I would be alive today.

I had the good fortune of speaking with a few people who warned me in advance that my insurance company was notorious for denying care under my circumstances...and that the physicians involved in the process for referring me out for care were notorious for delaying tactics...and it was explained to me the kinds of things they would do to delay (ordering tests that were not really diagnostic for lung cancer until the cancer was at END STAGE, making notes in the chart stating that patient should follow up for referrals for specialty care, but telling the patient that nothing was wrong and no referrals were actually made or authorization actually requested, so no tests would actually be ordered, etc.)

If we are going to be true advocates for one another then I hope that we will address these kinds of problems as well. Many times I've read things posted to this site about the problems people are experiencing, as inpatients and outpatients. It breaks my heart...and it angers me to see the same types of things being perpetrated over and over again.

So if I come across as a tough, old witch, please believe me when I tell you that I didn't start out this way. I started out asking nicely....and becoming increasingly more ill.

I think that those of us who have survived this have a responsibility to help those newly diagnosed-or waiting to learn if they have lung cancer-to survive. The kinds of problems detailed by Mark on the General thread are not uncommon. He needs advice on how to make his medical provider accountable for his or her actions, and how to make his PPO or HMO or PCM (or whatever) do what they are supposed to do-which is to DIAGNOSE and TREAT him on a timely basis.

What do you folks think?

Fay A.

[Guest CindiB]

After what my mother has been through thanks to her original primary care physician, I couldn't agree with you more. Anything at all that I can do to help, I will certainly do. People trust their physicians. And so many times whether it is through arrogance, or an insurance companies' particular protocol regarding diagnosis, these physicians in whose hands we place our lives , fail us miserably. Most people don't know the correct questions to ask, or how to ask them. They don't know how to push for diagnostic tests, or even what tests they should be asking for. They simply put themselves in the hands of those who are supposed to heal and protect them. What can we do? Because I am right there waiting to do it.

Cindi

[bart ziggie ( Greg )]

Fay, i think your post is right on the money. I fired my oncologist in sept. it was the best move i ever made. It infuriates me to think any one of us be treated as a number or just another face. You are exactly right we see so many people here come to this board and have been totally snowblinded by their Drs. It is really a tough situation in a way because i realize some folks just dont want to know any more than they have to about their illness. I dont understand this thinking but i will respect it. I dont know if you read my recent post regarding PET scans for sclc patients but ill tell you what i am still sticking to my guns and i am very adimant about it. Before i was declared NED i should have had more than a stupid CT of my chest. I argued this with my Dr. Thats why he is fired and i now have a full blown recurrance. I truly belive that back in Aug. i still had cancer.I should have had a PET scan. Had i been given a PET scan and it would have showe anything i could have tolerated 2 more rounds of treatment and i certainly wouldnt have proceeded with the PCI treatments had we knew. I related many symptoms to my Dr. thru the months and they fell on deaf ears. I think we need to really let newly diagnosed folks know that they should not put up with any crap at all and always seek a second opinion no matter how short time seems before they have to make descicions. This really gets my blood boiling. I have got awesome Drs. now. I am at a major university here in St. Louis and it is top of the line in my opinion. My dr. also specializes in lung cancer only. Well at any rate thanks for the post and giving me the chance to blow off some steam. Maybe we can together make a concerted effort to emphasize and re- emphasize the need to seek second opinions. Fortunately everyone doesnt have bad Drs. or bad experiences but those of us that do really pay the price. Sometimes with our lives.

Regards

Greg

[cathy]

Well, you struck a nerve with me. I would love for it to be mandatory to have cameras put in operating rooms or any room where a medical procedure is being done. I have many doubts about my dad's surgery and radiation procedures. I just dont have the emotional strength to fight alone. I can tell people all day long to be proactive in their health care and that doctors really dont know everything and this that and the other but for me to actually get out and do something about it I dont think I am that assertive, sure wish I was though. Good for you Fay! Go get em

[Ry]

Well Fay, I went back and found the post from "very distressed" you referred to. After reading your post here and then going back to his, I am just chilled. This man is sick, he needs care (he needs a Norme or a Fay as his advocate).

I think you're right, there are some very scary things going on with insurance companies and in the health care field. Managed care is unfortunately going to mean people that don't stand up for themselves will die.

[norme]

Dear Fay,

YOu are one of the reasons I came out of my pity party today. I read what you have posted and saw your strength and felt your anger for Buddy's medical records are what you are talking about.

They must be a pattern that we can say to all the new people that come on board to do the following when either they or their loved one finds out they have lc.

From what everyone has been through on this board, I think we should be able to have certain steps to go though should this or that happen. For instants, if one's lung cancer was found out by an x-ray or a ct scan and the dr wants to operate one should first have the dr do scans of 1. brain and 2. PET. 3. Ct or MRI of chest and etc. Do not go for the operation until these are done. After the operation, go for chemo and radiation, and if possible have them at the same time. List the chemo's that are available . Then after so many months make sure Ct's are done along with another PET. Somehow we should be able to have a list that would accomplish this. It is not a medical list for we are not medical people but I sure wish I would have known when Buddy's lc was found to have had a pet and brain done before they took out his lung. Would have liked to have known if it was in the brain before the lung was taken out instead of having to have found it in the brain some months later. Of course it might not have been in the brain until some months later but this we don't know because the scans were not done at the beginning. No dr finds the cancer today and operates tomorrow so it is possible to have the necessary scans before surgery. I remember this new onc for chemo was shocked that Buddy had not had a pet test in over a yr. I sure didn't know to ask for one before now.

I feel like if I had lc I would want to have scans done (brain, abd/pelvis, chest, and bone) every three months whether I had any prob or not. The earlier new areas are found the better off the patient.

So now that I have left the pity party, where do we go from here.

[bobmc]

YES, Fay you are absolutely right !!!!;

It is our responsibility to help others and always to be an advocate for each others health care.

I remember calling my my insurance co. about second opinions and out of network costs. I was in no mood, I let them know I was diagnosed with cancer and wanted answers, I told them that if they were going to say no then I wanted it in writing and please copy my lawyer. I had no problems!!

Fay, it's easy to forget these things sometimes because that's not my normal disposition, PLEASE, feel free to shake us when we need shaken; like I said, love your style and want to put a smily face on yer head!

God bless ya girl,

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

[cathyr]

Gosh Faye,

I couldn't agree with you more! As a matter of fact, I am sitting here waiting for a call from either my surgeon or my oncologist to give me the results of a PET scan done a couple days ago. A different surgeon has been "watching" a spot for almost a year now. A few weeks ago after my newest CT scan shows it growing and a new spot on my other lung now, I went to see him. He was too busy and I was given to a "new" surgeon in the office. He shrugged it off as probably benign, but said we'll keep a closer watch on you and then scheduled to see me again in 2 months. I did not feel comfortable with this and made an appt. to see my original surgeon (200 miles away) for a second opinion. He did not like the way the CT scans looked at all and immediately ordered a PET scan for me. (I suggeted one to the other surgeon myself and he didn't think it was necessary). He said it didn't think the other surgeon actually looked at my scan because he wouldn't be so nonchallant about it. Anyway, as I sit here watching the clock ticking away, I am filled with fear and anxiety as I have had 2 years of no cancer and now it appears as though its back. If it is, I only hope I can deal with it with as much grace and dignity as so many others have on this site.

May God bless us all and may we all find the strength to face our challenges and prevail!

Thanks for listening to me.

Cathy

[BarbaraL]

You *go* guys and gals, especially Fay!

(Love your photo, by the way. Hubby came up behind me and saw it and said "that's you!" )

It's unfortunate that so many people treat authority figures, like doctors, as gods. They are human, just like the rest of us, and even the ones with the best intentions and knowledge make mistakes. And sometimes the well-intentioned people in their offices make mistakes. That's to say nothing of the humans who are also incompetent, uncaring, unorganized and ill-informed.

We need to keep emphasizing to everyone who comes here how important it is to be informed, and to take charge of their/their loved one's care.

And, echoing what Norme said, I'd love to see a standing post in the "newcomers" section regarding just this sentiment. We could certainly include a disclaimer that none of us are doctors, but as experienced patients and caregivers we advocate that people learn all they can, suggest how to work with doctors and insurance companies most effectively, and what questions to ask and tests to expect/demand as the process progresses.

I certainly did my research right from the DX, got recommendations about oncologists, and asked a lot of questions. I also had a forceful conversation about 3 weeks after my diagnosis with an insurance CSR because they sent me some BS paperwork about coverage, even though I followed my Primary Care Physician's directions to the letter. After that, I reviewed my policy carefully, and have since been covered, without question, on everything. It's mostly about pre-authorization and making sure you've got it.

We need to share our experiences and knowledge with others so they don't have to go through such crap. I wish I had found this board much earlier, but I'm so I happy I found it eventually!

Barbara

[Guest DaveG]

As many of you know, I recommend being your own advocate. As the patient we know more about what our bodies are telling us. I, to, am one of those who went out and found a new oncologist. My first oncologist specialized in breast cancer and took my case as a "favor" to another doctor. I could never get the man to smile and my wife and I now refer to him as "Dr. Doom and Gloom".

I have had my dealings with insurance companies, hospital billing, and pharmacies. I have one pharmacy, which I have grown to like, but they won't honor my insurance. I have asked them to investigate that insurance and sign on with them. They are doing as I requested. I have filed at least two appeals with my insurance and have won both. What I have found out, is that many times it is not the insurance company's fault, but is the medical provider in that they mis-code diagnosis, or under provide information. I both cases, that I appealed, I requested both the insurance carrier and the provider review the information submitted. I found that it was a break down in communication. The big lesson is, review your insurance statements and medical provider statements and insure that the proper information is being dealt with. Above all, DO NOT be embarrassed or be shy about a problem dealing with billing from the medical provider or improper insurance deciions.

Investigate your medical provider. Don't continue with a doctor just because you have had that doctor for years and you trust him or her. That doctor may not have the knowledge to care for your current situation. Find the doctor and medical center that you will be comfortable with. It is important that you be totally comfortable with your medical team. Loyalty is good, but not when that loyalty may jeopardize your own medical care. I have been with the same family doctor for close to 24 years. I have grown to trust his care and decisions. Immediately upon my initial diagnosis of lung cancer he told me to find a good oncologist and thoracic surgeon. He made recommendations as to medical centers and let me decide the best way to go. He was very quick to admit that cancer and oncology are out of his realm. When I told him that I was having problems with oncologist #1, he immediately told me to find another oncologist. I still see my family doctor for things non cancer related and he likes the fact that I have kept him in the "loop".

To sum this up, I recommend that each patient should be their own advocate. I cringe when I hear stories of families with holding information from the patient. I believe that medical decisions, when the patient is healthy and coherant, should be left up to the patient. I am also a believer in advanced medical directives.

[BarbaraL]

AMEN Dave!

[Fay A.]

Well I agree that we should all be our own best advocate, but having said that I also recognise that sometimes it helps to have back up. I'm assuming that you , Dave G., have never had anyone treat you as if you were stupid. I have an Hispanic surname, Dave, and live in California. (The fact that the only thing Spanish about this WASP from Tennesse and Alabama IS the name I married doesn't seem to be very important.) I'm also married to a retired enlisted military man. These two facts mean many people make certain assumptions about the kind of person I am. And the usual assumption is that I am too ignorant to know the difference between competent medical care and borderline quackery. I'm not. But it's been a rough battle for me. I asked for help many times, and many times I did not get what I needed until I had a family member present when I asked...My request that I be given a referral to an Oncologist after my diagnosis was one such incident. I asked (and eventually demanded), but the doc absolutely refused to do this for almost three months after my diagnosis. It wasn't until my brother came along with me for an appointment that she wrote the referral. I guess my point is that you, Dave G., appear to have had the visible support of your wife, and your daughter (who I believe is a medical professional at a hospital in your area). Those factors will color how you are treated. I'm glad you have been given such good care. We all deserve it. I was speaking to the issue of those who have not, and how best to educate folks on being their own best advocate when they are not being treated appropriately. And sometimes, Dave G., that means bringing in others. One other thing, you were diagnosed with early stage disease, yes? No symptoms at the time of diagnosis? I would like for you to imagine trying to deal with all the decisions, tests, learning the language of lung cancer, learning what questions to ask, delays in the scheduling of those tests, all of it, at a late stage...when you're actually ill from the cancer and the stress. Now imagine trying to do this alone...or with very limited outside or familial support. I'm asking you to try to put yourself in the position of others who DON'T have the support network that you have, nor do they have the type of good medical care you have received, provided by doctors and medical staff who appear to care about you. They DO have strict limitations to what insurance they do have. I was referring to those people when I posted above, people who have my kind of experience. You, obviously, don't need to learn anything. Except for maybe I think you missed my entire point.

It has taken me 4 years, 5 months, and 12 days, plus personal experience, losing my Mother, her sister, and her brothers to Lung Cancer to learn all I have learned about navigating this nightmare. All I'm trying to do is to help someone else at day 1 or 14 or 30 understand what they might need to do for themselves or their loved ones.

Fay A.

[Guest DaveG]

Well Fay, we have one more thing in common: I am an E-7, US Army (Regular) Retired (8-1-1983, 20 years, 3 months, 3 days). So we share our military ties and lung cancer. I was a medic, specifically Medical Lab and Nuclear Medicine, for 16 years of the 20. The last 4 years was as a recruiter. My family and I retired in the same community where I recruited. The family doctor I talked about, I started seeing him while I was on recruiting duty. The closest military medical facility is 180 miles away at Great Lakes Naval Station, Illinois. I am on Tricare and supplemental insurance. The University of Wisconsin Hospital and Clinics accepts Tricare. There is a VA Hospital affiliated with the University Hospital, but I was not disabled when I retired from the Army and can not qualify for care under VA, because of my income. Believe it or not, my military retirement pay puts me over the income limit for VA care. The local Veteran Service Officer tried to connect lung cancer with my service, however, after reviewing my service medical records, 2 different oncologists could not find a definite connection between my military service and lung cancer, other than the fact I smoked, and we already know where the Department of Defense stands on that issue. So I go to a research facility and opt for clinical trials under Dr. Joan Schiller.

As an advocate my experience with lung cancer has been written up in two local newspapers, one local magazine, and no less than 3 TV appearances in the last year. The most recent article can be read at http://www.madisonmagazine.com This next Tuesday and Wednesday, November 18 and 19, I, along with other lung cancer survivors, will be manning a table at the University of Wisconsin Hospital, about lung cancer awareness.

My wife goes with me to all my oncology appointments and treatment appointments. She also asks questions and between the two of us, we act according to the best information available. Dr. Schiller is well award of the fact that I spend much time on the internet about lung cancer. She is also well aware of this group and message forum. She is encouraged over the membership. Obviously, she has visited this site.

[Guest DaveG]

A PS to the above. Yes, I started as a Stage I, with an "accidental" initial diagnosis. Since then, as my signature state, I have had 2 surgeries, was restaged to Stage IV, when the cancer metastasized to my lymphatic system, went through 4 months of chemo for that, got a clean scan in September, and 6 weeks later I have mets to the liver. My sister is a 17 year survivor of Stage III Breast Cancer and our father died, in 1995, after a 6 year battle with bladder cancer.

Yes, I will admit that I may have been more fortunate than others because of my 16 year experience in the medical field. Yes, I did have previous experience, on the other side, and had knowledge as to how the system works. I had both military and civilian experience in hospitals because I did work in civilian hospitals, part time, while in the Army. I will say this much, I would rather be healthy and working on the other side of this medical picture that all of us are involved in. I now face "I don't know what", until November 25, when I go back to find out what the next step is. All of us know that liver mets is not the best mets to have with lung cancer. There is also a "suspicious" spot in the upper lobe of my right lung, they are watching. This is also new, on the scan of November 4.

My daughter, who is a Doctor of Audiology, did help with the initial appointment with the thoracic surgeon in September 2001. I am now going to a different hospital and clinic, from the one she works at. I gained my initial appointment with Dr. Schiller, through a fellow member of the Lung Cancer Support Group I belong to. Also, I have not worked in the medical field since 1979.

I have experienced many of the same experiences that others on this board have experienced. My daughter is like many of the daughters who are advocating for their parents. She has all the same worries and concerns about me, as those who are members of this group. She may be active in the medical field, but we have members, with lung cancer, who are members of the medical community as well. And don't forget Dr. Sam. If anyone helped me through the system, it was my sister, who is also a retired social worker, and, as previously stated, is a 17 year breast cancer survivor, and received her treatments at the same hospital where I am now going.

So, I don't consider myself privelged, or having an inside track on medical care. I am just fortunate to live close to a major cancer center in the United States.

[teresag]

As a health care professional, I can only say that I am moved and distressed by what I have read here. I agree wholeheartedly that anyone with a serious illness needs an advocate. I myself needed one when I was first diagnosed with severe asthma and couldn't sleep at night, much less function during the day. Thank heaven that is over - and thank heaven for my wonderful sister who cared for me in a way I was not able to do myself.

Do you think care is better at university medical centers? Or doesn't it matter? I ask because my own father was gravely undertreated at a small community hospital where the surgeon was quite happy to let him die, patronizing his family all the way, never saying that his real agenda was to let Dad die. If not for my advocacy (the staff & the surgeon had a different word for it - you can guess what it was), I believe he would have died. I still suspect they saw the lung nodules then on his chest xray and did nothing. He died of lung ca a year later. We had a similar experience with my husband's aunt at another community hospital where we used to live.

I do think paternalism in medicine is a huge problem. And perhaps women and people of certain races or ethnicities are patronized more than others. I like Fay's suggestion about a "tips for newcomers"-type thread that would be permanent.

Keep fighting for yourselves, friends. And I am sorry it is this way in our broken health care system.

[Fay A.]

Dave G, You missed my point again. The point is my post wasn't about YOU, or anyone else who has good, competent medical care and a strong support network. My point was about trying to insure that we all are given good, competent medical care and have a strong support network. I am not saying that all medical providers are bad. There are very good ones out there. I'm talking about the bad doctors, Dave. I'm not making light of your efforts in advocating for lung cancer awareness, either. But there are different forms of advocacy.

I did not know about you having worked in Nuclear Medicine for 16 years. That explains to me your apparent defensive response where no attack was intended.

Knowing you worked in Nuclear Med is interesting in light of your military service, and the VA telling you that they couldn't find any link between your military service and your development of lung cancer, aside from the smoking. There's an article in the one of the back issues of DAV magazine where they discuss a diagnosis of lung cancer in Atomic Era Vets and anyone else who worked in Nuclear fields (Submarines, Nuclear Medicine, Nuclear Weapons testing, Storage of Nuclear Weapons and waste.) I'll try to find the date and number of the issue. You may wish to persue an appeal on their denial of your lung cancer as service related.

Teresa, I think you are correct in that we should be willing to travel as far as we are able to go when necessary to obtain the best medical care possible. And I don't think that we are going to find the best care in our local communities very often. I KNOW there are exceptions to this. But if you live in a small town out in the middle of no where chances are you are not going to have the best of care. I agree that what we need is a "plan of action" for those newly diagnosed, or going through the diagnostic workup for suspected lung cancer. It would be a big help to them.

Fay A.

Fay A.

[shirleyb]

go fay

[Snowflake]

WOW, is it ever hot in here...

So, let me interject a few thoughts..

Yah! Right on, Fay! EVERYONE deserves a chance and easily accessible information. I know that some of the stories I have heard on this board are VERY depressing... I'm lucky in that a) I have good insurance; I have VERY good doctors; c) I was diagnosed early; and d) I have my family and friends supporting me.

A page with links to other sites with information specific to different types of lung cancer might be nice, too. Having to muddle through ALL the statistics to find out what my "chances" were was DEPRESSING, to say the least.

ALCASE has form letters on their site to send to media, etc. Either a link to their letters or having one of "our own" would be a good thing. A well-written letter that people could add their PERSONAL story to might go a long way...

Dave, regarding service responsibility for your cancer - how 'bout this one: Did you ever live in on-base housing? The last house that I was in (1995-1998) had warning signs ALL OVER on the pipes that the insulation contained asbestos...and the paint was lead-based (house was built in the 40's or 50's) BUT I was told it was of no concern to have a young child in said housing because the lead paint was "encapsulated" by coats of new paint (hmmm...so the paint that was chipping in my child's room down to bare wood was no hazard?? Isn't the lead on the flip side?)....lead pipes? When I was my father's dependent, we lived outside of the US for years at a time in housing that on the OPTIMISTIC side would be called sub-standard....as my ex-husband's dependent (a mere 4-10 years ago), I lived in the housing described above... May not have just been your work environment that put you where you are today, could have been where you LIVED, as well... Of course, anyone dealing with the military and their hospitals knows it's darn near impossible to sue them, in fact, I had to sign paperwork stating I wouldn't! (Anyone looking for a loophole in that? If I had died due to their malpractice, my husband at the time could not have sued - but my PARENTS could have...)

I'm posing the home environment as that is a big question in my mind - I've never smoked. I have worked in offices in industrial environments (oil refinery in Alaska, chemical plant in Michigan), BUT things are really "pretty safe" now in corporate America - I think the refinery was a cleaner environment then the housing I lived in...go figure!

My advice to ANYONE dealing with military hospitals or the VA is to get a second opinion if at all possible. This would be due to gross negligence by doctors on behalf of my child presenting with a 104 degree fever, no tears, no spit and no pee...and an ER doctor telling me that the boy was fine, I was just a "paranoid young mother" (at 28?? with a 6 y/o?? NO WAY!) ... upon pushing this moron to test the child for SOMETHING because he just "wasn't right" (a mom knows, for crying out loud, the boy and I spent LOTS of time together), he went on to tell the CHILD about the needles his mommy wanted the doctor to stick in him... I asked what he could do that was less invasive (i.e. no needles because by then my child was spastic!)...we settled on a urine dip...and as the $%^ doctor was reading off the results over TWO HOURS later (all this time that fever NEVER dropped), he was really being a jerk about how "fine" everything was, stated the boys WBC was over 30 and that THAT wasn't right... THEN he noticed the kid was drying out before his very eyes (as I said, no tears, no spit...) and started an IV line (yeah, that needle that he had just told the boy was HUGE - glad the tech was good with kids, he had it in before the boy knew what was up) and put in THREE FULL BAGS of fluid and TWO separate antibiotics and told me he wanted to keep the kid overnight! Uhhh, NO! I had decided that the child was going home with me and if he got worse, we were going off base if it bankrupted me!

A follow-up appointment the next day led to a diagnosis of septic blood - the boy had a blood infection and could have died had I let this sack of stuff bull doze me and taken him home without any medical intervention!

And MY medical care? When I got divorced and moved home, a simple test that had been performed PRIOR to being a "military wife" that had been tagged "follow up in 3 months" and according to the military was "clean" for four years came back to show pre-cancerous cells! Thank you VERY MUCH....

Nope, this girl has NO USE for military hospitals NOR the VA. I believe in the idea behind the VA, medical care for those who have defended our country, etc., just WISH the "medical care" was AT LEAST up to par with a small-town hospital, NOT a small-town butcher shop!

Fay, I hear you loud and clear! Amen, sister, you tell it!

Dave, I had no intention to dis you, hope you don't see it as that.

...and I've had my vent for the day...got rather heated and managed to NOT swear! WOW!! Maybe there IS hope for this sailor's daughter....

Becky

[lilyjohn]

I read what you are writing and I say why didn't I know these things a year ago. Yes we need to find a way to reach new comers. A while back I posted saying that I have written out the horor story of Johnny's treatment and death. He falls into so many of the caragories mentioned. The really bad news other that the worst nighmare of my life when he died is that no one will do anything about it. I have letters admitting what they did to Johnny from the medical board and they excuse it all. It seems it is important that each patient be given a booklet in Washington explaining their rights. It is not important that those rights be adhered to. In short a doctor can give a patient any drug he wants even if it kills him and even if the patient refused it. They decide the treatments and get away with anything they want and no one is willing to do any thing about it. It is a disgrace! I get so angry I want to see them at least exposed but the way things are that will never happen. My only option is to tell his story to as many people as I can. Word of mouth is sometimes better than all of the legal chanels that seem there to protect the medical field and pardon my language but the hell with the patient.

During my research I also found out that it is legal for doctors to get bonuses from insurance companies if they save money by ordering less tests. If that is not bad enough consider it is a practice that not only private insurance companies use but medicare as well. Now I will tell you that if you did not read Johnny's story he had the run around for months, never had proper testing and was refused anxiety medicatio but given Vicodin knowing he was using it to try to help his anxiety. The hospital gave him a drug that he refused saying he had had a bad reaction to it and it was listed as one of his alergies. When he would not sign a DNR he was harrased and shipped to another hospital in Olympia where they decided that he needed morphine in addition to Vicodin even tho he had no pain. They never asked him if he wanted it and they never monitored him. They drugged him into a coma and refused to take his vital signs saying that he was in a natural sleep. After over 4 hours of me questioning they finally took them AFTER they bathed him and changed his bed. When they took him to ICU they did not one damn thing for him but bag him. The ventilator that we both expected was never used. They stood by and let him die. The best or I should say the worse part was that he had been exposed to mold for years and his first CAT scan said that he had nodules that were consistant to lung cancer that had matastised from somewhere else or fungus or several other things. He NEVER had a biopsy and the nurse and doctors told him he would never get better even tho he gained 30 pounds while on chemo. So you see I have no faith in any doctors. One will have to do a lot to prove himself to me. I think anyone who trust one completely is asking to die. Let's get the word out and when you see something wrong make noise in the papers or the other media and to congress. Sooner or later someone will listen. I refuse to give up.Lillian

[teresag]

Lillian, Your story is tragic. I'm sorry this happened to you, and I admire your commitment to telling others and possibly preventing it from happening to them.

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Re: doctors getting rewarded for not providing care, you are absolutely right. This is one of the basic premises of managed care. It was designed as a way to reduce unnecessary proedures, tests, and specialist referrals. Doctors make more money if they reduce the cost of these "extras." Sadly, some drs. let it influence their medical judgment. And the egregious flaw is that the system contains no checks and balances to see that doctors don't under-treat patients just to benefit their own checkbooks.

In the 80s, all the talk in health care was about "running health care more like a business," but unfortunately the laws of the free market do not apply in health care, because it is a basic right & need, not a consumer good. Buying chemotherapy is not like buying a Toyota!! Worse yet, physicians control both supply and demand, so health care acts more like a monopoly. Still, I sometimes hear physicians claim that they should make as much money as they possibly can, regardless of how if affects access to care.

Our "system" (which is not a system at all, really) is so broken, I'm not sure it can be fixed. <<>

[lilyjohn]

Thank you for your reply Teresag

What really gets to me is that the medical board does not even investigate what happened to Johnny. There investigations are just into procedures that are listed with each facility. They excuse mistakes, deliberate actions that take lives and lies as if they are the normal thing to do and questioning them is wrong. From most of the information I got just from their rejections of my claims it shows that they did not even look at Johnny's records or test results. Many of the letters did not even mention his name!

You live in Portland so you are very close to where we lived at the time. We were in Centralia WA. The hospital there started the process that took his life then when Leyton Jump tormented him about the DNR and refused to treat him because he would not sign one he had him shipped off to Capital Medical Center in Olympia. I was there I watched but was so green and stressed out that I did not realize what they were doing until it was too late. I filed claims against Jump and both hospitals as well as the nursing home that gave him the Morphine in a nebulizer that started his problem. All claims were rejected.

I got in touch with the office of public disclosure and found out that Jump had had 6 previous claims filed against him. One was for verbal abuse and another was for reckless endangerment. All cases had been dismissed most without even and investigation. Some were over 7 years old so I could not get a file on them but two of them I sent for and recieved. In one case he was charged with sexual abuse against a man. In another he was charged with refusing medication to a patient and verbally abusing her for asking. I know the emotional stress it caused me to file those claims. It is a process that requires a lot of red tape and reliving the horor of the events. No one will put themselves through that without good cause. Yet the medical board dismisses it with no investigation or if they do one that is just for show.

I tried to get reports on both hospitals about claims filed against them. I wanted to see if anyone had made the same complaints as I had. I thought maybe I could see a pattern and use that to get something done. I was told all of those records are public and I could get them. I made the request then later recieved a letter saying that the first 50 pages are free then after that you have to pay $15 a page. Still I told them to send them to me. That was last February. I have yet to recieve one page. About 3 months ago I recieved an email from them asking if I would take a condensed version saying it would be much quicker. I replied saying that I would. I have yet to hear from them again. Now I wonder is the reason because they have had so many claims filed against them or is it that I am just being stalled? They say you have the legal right to know but getting the information is next to impossible regardless of that. If a person wanted information about those hospitals while trying to decide if they would put their life into their hands they would have time to die many times before they got it. To me that is outrageous.

I have sent letter after letter to the medical board with additonal information. I quoted to them the patients bill of rights that they give out and showed them exactly how Johnny's rights were denied. They paid no attention. All they want to know is that the booklet is handed out. I want to see a law passed that gives us a way to get information quickly about both docters and hospitals. I want to have papers put in each docters office and in each hospital with questions about how the patient's rights are treated. The patient of caregiver should get the papers fill them out and send them to a board that would review each response and file it. All answers should be periodicaly checked against one another so if a pattern developes it will be caught and acted upon. I would also like to see them made available on the internet along with any and all claims filed against anyone in the medical profession weather they were acted on or not. Then and only then would the public have the information to make a decison about who they can trust with their lives.

I believe too that every three months all information about mal practice suits and claims filed should be published in the local newspaper. Everyone should have this information readily available to them. It is time that the people start mattering again. Not money and docters egos!!! If they know that they are being watched and what they do will be known they will be far less likely to do to anyone else what they did to Johnny.

I beg anyone who has cancer or suspects that they might to get all of the information that you can. Never trust one docter or clinic. Above all keep records. I kept records but did not go nearly far enough. I say keep a small recorder and record every word spoken and the time and date. Ask questions about every medication and the reason for giving it. Make sure you have the date time and the name of the person talking. Taking notes is not like having it recorded in their own voice!! They will be far less likely to do something not to your advantage if they know you are keeping watch and will have proof to back you up. Make certain to get copies of all test results and demand to see exrays. Don't just take their word for what it shows. You may not know what you are looking at but you will remember what you see. Later down the road that could be very important.

I'm sorry if I go on too much but I have been through a living hell this past year and I want to make sure that if their is any way possible I can save others from the same pain. It is hard enough to lose someone you love to any disease and cancer is just about the worst. It is much worse to know that it did not have to happen when and how it did and too to have been used to make it happen. My love for Johnny and minimal knowledge let them use me to help kill him. I have to live with that. I ask myself everyday why didn't I see. Why didn't I make demands. Why did I trust. Life is just too precious. Keep informed and armed with information and never give up and most of all don't let the docter force you to give up. Fight them as if it means your life because it does. Lillian

[teresag]

Lillian, You've done so much to try and fix what went wrong for your loved one. Your anger is justified, and you are so right to use that energy to urge others to self-advocate, educate yourself, and remain vigilant. I hope your pain eases with time; know at least that you did all you possibly could. Blessings on you, Teresa

[Fay A.]

Lillian,

Time to go to the press with the facts. I am so very sorry for all you have been through.

Go to the press with this.

Wishing you well,