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SRMcMahon

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What is the name of your state? ND

My husband died a couple of months ago from liver and kidney failure. He had complained of illness for several years. His doctor visits were sporadic, but he did see doctors. At one time he had a pattern of binge drinking, which faded over the years.

In the early 90's he was told his liver enzymes were elevated and that it was a sign of alcohol-induced liver damage. He did continue with his pattern (slowly changing) of alcohol use. In the mid to late 90's he was told his liver was enlarged. He frequently complained of GI symptoms. He also said he felt like his mind "was going". He was very fatigued and his muscles were atrophying. He had diarrhea and what appeared to be abdominal bloating. The doctor visits became increasingly frequent. He had been seeing a GI who eventually turned out to have licensing problems (still licensed in the adjoining state and the the problems were related to issues pertaining to "psychiatric care", no real details in the papers). The GI seemed to provide much more personal care than many doctors, but my husband started going to our family practice clinic when the GI lost his license. This clinic provides sliding-scale and fairly low-cost, very basic care, with a few physicians, a small pharmacy, and a lot of med students, PA's, NPs, and so forth. My husband saw a physician at the clinic. Eventually the dr. referred him to another GI. This GI (with whom we were always very impressed) wondered why my husband had not been tested for hep C and identified liver disease. The family dr. didn't do the hep C tests for another 4 months, during which time he consistently referred to my husband as having "alcoholic liver disease". My husband had been sober for some time by then but was getting sicker all the time. Eventually the hep C was confirmed. The next 18 months were spent with his care, finding a way to cover his medical expenses (successfully, although we went through most of our savings before that--we learned about insurance for the uninsurable and were luckily able to pay for it). He died before a liver transplant could be done. There were a lot of complications in that time period--his primary doctor left for a different job, the clinic lost another doctor, we were trying to get another primary set up, he kept landing in the hospital. He did NOT have a regular doctor the last three months of his life. I know this did not help, although I also know he was very, very sick.

Here are the three things that bother me most:

1. In the last few months of his life, he spent some time in a "transitional care unit". An appointment had been arranged for him to get a new primary doctor, an internal medicine specialist. The doctor (I don't know what specialty) who ran the TCU cancelled the appointment without discussing with me (my husband by then had frequent episode of confusion). I had previously emphasized to the nurses how important this appt was because of my husband's increasingly unstable condition. I never did meet the TCU doctor. The nurses said he cancelled the appt "because it's just for a physical and he doesn't need that". By then my husband had been relying on ER and hospital doctors for well over a month. My husband was discharged late Friday afternoon. The med orders were a big change from before. I wondered, but it was too late to find out why they had been changed. Later it turned out that a nurse had incorrectly transcribed instructions but also a med that should have been prescribed had not been. (The meds were diuretics. One diuretic was missing from the orders and the dosage of the other changed. The two diuretics are typically given together since one can raise potassium levels, a problem my husband often had).
By Monday morning he was unresponsive and went to hospital by ambulance, was in ICU then regular room, total of more than a week. He was discharged for a few days, then back in for 9, then out, then in for what turned out to be the last time. He died 7 weeks after the cancelled appointment, which was never able to be rescheduled, never out for long enough. During the time frame he was in the hosp then TCU, he developed infection (first time!) and went on antibiotics, so something new was happening.

2) late August, he was released from the hospital so we could drive 240 miles to transplant center (we were told since that was just for evaluation there was no coverage for ambulance transport. They kept him in long as possible so he could be as stable as possible). Our understanding was he would be immediately hospitalized at the center. This did not happen, and this was a new center for him. First outpatient appointment they did paracentesis. In the past this was done in hospital bed and tap on his left side, using ultrasound imagery. At the center, he was placed in straight-backed chair. I later realized there was no ultrasound. He was tapped in the right side. He began to bleed, then the flow stopped and they started over. I remember feeling horribly uneasy about the whole thing. Less than 48 hours he was admitted thru ER with abdominal pain, weakness, vomiting. They found a hernia, which they popped back in and he felt better. Two days later he developed septicemia, and the rest was cascading infections and kidney failure. Also, I remember someone asking us how long he had had kidney problems, and how I panicked, because the last primary doctor we had had indicated his kidneys were doing fine--one of the hopeful facts we clung to (along with no infection!).

3) but before all that, he was seen by doctors for years, and doctors did note hepatitis. As the one GI said, "I wonder why nobody has never tested you for hepatitis C". Later, that GI said yes when I asked him if by 1995, say, the medical world knew enough about hep C to recognize indications for testing.

But suing? I keep thinking of how much my husband appreciated the care he got, and I know doctors are not gods. The family doctor who referred us to the GI is known for his dedication--he's not making bundles of money, he works mostly in public-health areas, doctors without borders, helped set up this clinic to provide access to a lot of people who would have trouble getting medical care otherwise. The earlier GI who had licensing problems--but seemed to be very thorough, very kind, very caring. And I can't get the one thing I want, my husband back. I do believe there were many factors in his death, many mistakes--but I don't believe it is reasonable to expect perfection. But a HCV test earlier could have meant antiviral treatment and a life. And I know other people with HCV who go undiagnosed BECAUSE they are simply assumed to be alcoholics.

So, any thoughts on how a person makes a decision about something like this? Also, do people who win malpractice decisions find they get peace or closure from that, or do they get their peace some other way?
 


J

JackSchroder

Guest
SRMcMahon said:
What is the name of your state? ND

My husband died a couple of months ago from liver and kidney failure. He had complained of illness for several years. His doctor visits were sporadic, but he did see doctors. At one time he had a pattern of binge drinking, which faded over the years.

In the early 90's he was told his liver enzymes were elevated and that it was a sign of alcohol-induced liver damage. He did continue with his pattern (slowly changing) of alcohol use. In the mid to late 90's he was told his liver was enlarged. He frequently complained of GI symptoms. He also said he felt like his mind "was going". He was very fatigued and his muscles were atrophying. He had diarrhea and what appeared to be abdominal bloating. The doctor visits became increasingly frequent. He had been seeing a GI who eventually turned out to have licensing problems (still licensed in the adjoining state and the the problems were related to issues pertaining to "psychiatric care", no real details in the papers). The GI seemed to provide much more personal care than many doctors, but my husband started going to our family practice clinic when the GI lost his license. This clinic provides sliding-scale and fairly low-cost, very basic care, with a few physicians, a small pharmacy, and a lot of med students, PA's, NPs, and so forth. My husband saw a physician at the clinic. Eventually the dr. referred him to another GI. This GI (with whom we were always very impressed) wondered why my husband had not been tested for hep C and identified liver disease. The family dr. didn't do the hep C tests for another 4 months, during which time he consistently referred to my husband as having "alcoholic liver disease". My husband had been sober for some time by then but was getting sicker all the time. Eventually the hep C was confirmed. The next 18 months were spent with his care, finding a way to cover his medical expenses (successfully, although we went through most of our savings before that--we learned about insurance for the uninsurable and were luckily able to pay for it). He died before a liver transplant could be done. There were a lot of complications in that time period--his primary doctor left for a different job, the clinic lost another doctor, we were trying to get another primary set up, he kept landing in the hospital. He did NOT have a regular doctor the last three months of his life. I know this did not help, although I also know he was very, very sick.

Here are the three things that bother me most:

1. In the last few months of his life, he spent some time in a "transitional care unit". An appointment had been arranged for him to get a new primary doctor, an internal medicine specialist. The doctor (I don't know what specialty) who ran the TCU cancelled the appointment without discussing with me (my husband by then had frequent episode of confusion). I had previously emphasized to the nurses how important this appt was because of my husband's increasingly unstable condition. I never did meet the TCU doctor. The nurses said he cancelled the appt "because it's just for a physical and he doesn't need that". By then my husband had been relying on ER and hospital doctors for well over a month. My husband was discharged late Friday afternoon. The med orders were a big change from before. I wondered, but it was too late to find out why they had been changed. Later it turned out that a nurse had incorrectly transcribed instructions but also a med that should have been prescribed had not been. (The meds were diuretics. One diuretic was missing from the orders and the dosage of the other changed. The two diuretics are typically given together since one can raise potassium levels, a problem my husband often had).
By Monday morning he was unresponsive and went to hospital by ambulance, was in ICU then regular room, total of more than a week. He was discharged for a few days, then back in for 9, then out, then in for what turned out to be the last time. He died 7 weeks after the cancelled appointment, which was never able to be rescheduled, never out for long enough. During the time frame he was in the hosp then TCU, he developed infection (first time!) and went on antibiotics, so something new was happening.

2) late August, he was released from the hospital so we could drive 240 miles to transplant center (we were told since that was just for evaluation there was no coverage for ambulance transport. They kept him in long as possible so he could be as stable as possible). Our understanding was he would be immediately hospitalized at the center. This did not happen, and this was a new center for him. First outpatient appointment they did paracentesis. In the past this was done in hospital bed and tap on his left side, using ultrasound imagery. At the center, he was placed in straight-backed chair. I later realized there was no ultrasound. He was tapped in the right side. He began to bleed, then the flow stopped and they started over. I remember feeling horribly uneasy about the whole thing. Less than 48 hours he was admitted thru ER with abdominal pain, weakness, vomiting. They found a hernia, which they popped back in and he felt better. Two days later he developed septicemia, and the rest was cascading infections and kidney failure. Also, I remember someone asking us how long he had had kidney problems, and how I panicked, because the last primary doctor we had had indicated his kidneys were doing fine--one of the hopeful facts we clung to (along with no infection!).

3) but before all that, he was seen by doctors for years, and doctors did note hepatitis. As the one GI said, "I wonder why nobody has never tested you for hepatitis C". Later, that GI said yes when I asked him if by 1995, say, the medical world knew enough about hep C to recognize indications for testing.

But suing? I keep thinking of how much my husband appreciated the care he got, and I know doctors are not gods. The family doctor who referred us to the GI is known for his dedication--he's not making bundles of money, he works mostly in public-health areas, doctors without borders, helped set up this clinic to provide access to a lot of people who would have trouble getting medical care otherwise. The earlier GI who had licensing problems--but seemed to be very thorough, very kind, very caring. And I can't get the one thing I want, my husband back. I do believe there were many factors in his death, many mistakes--but I don't believe it is reasonable to expect perfection. But a HCV test earlier could have meant antiviral treatment and a life. And I know other people with HCV who go undiagnosed BECAUSE they are simply assumed to be alcoholics.

So, any thoughts on how a person makes a decision about something like this? Also, do people who win malpractice decisions find they get peace or closure from that, or do they get their peace some other way?
You recital has a strong and good attitude about your husband's care. You probably write what you did write for help, but not for advice leading toward a medical malpractice lawsuit.
I would advise against a lawsuit for several reasons. But before I go through them let me advise you, if you are still unsure, that you see a malpractice lawyer and talk to him.
Now, first, your husband was seriously ill for a number of years. His liver problems may have started with his drinking. Then later he developed Hepatitis C, a disease that is acquired in many different ways, and most likely in his case, during a hospitalization. Patients, like your husband, who have multiple medical problems do not make good subjects for a lawsuit.
Second, your own attitude tells me that you do not wish to sue. You may be right about that. You ask does sueing a doctor(s) help in establishing "closure". No. A lawsuit, especially one with the emotional charge that a malpractiuce case carries, does not provide closure. It can and often does add to the anguish you may be feeling. Lawyers are difficult people for most people to deal with, maybe even more than doctors. Lawyers who are good are hostile, impatient, and given to chastising their clients. Doctors may be aloof and arrogant, but do not often attack their patients.
You express some fondness for one or two of your husband's doctors, and you seem to appreciate what some of the doctors did for your husband. If you file a lawsuit ALL the doctors will be dragged into it, even those you ask your lawyer to protect. You will cause resentment among all those doctors, not just the ones you are sueing. You don't sound as if that is your goal.
So. think about your feelings a lot, and think about your role during a lawsuit. You will be attacked by the defense (insurance company) lawyers several times, because every defendant has a lawyer and each of them is entitled to depose you, or take your answers under oath.
This is a fairly long answer for me. I am usually in favor of sueing doctors if there is any promise the doctor will learn, and maybe his peers will learn something from the lawsuit. Yours is a case I'd say will not accomplish that goal.
But I am not a lawyer and I am not a doctor. So, if you wish to get another approach, by all means see a lawyer.
 
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S

SRMcMahon

Guest
Thanks, Jack, and I agree with your take. I will check with the patient rep in the hospital about the doctor cancelling the PCP appointment, because that was a stupid, crummy thing to do no matter what the result. (I did throw a fit about the PCP problem at one point, refused to take hubby home until I knew who could follow him once he got there. Bam, they arranged for a home nurse. I waited too long to throw fits, though)

Public service message: About the hep C: my husband had only been hospitalized twice in his life prior to positive ID: once in the mid-70s for what was then dxed as Crohn's Disease and as a child for tonsillectomy. A barium enema, an upper GI, and the tonsils was as invasive as medicine had got.

The doctor who diagnosed him said he probably had the virus for 20 to 30 years. At one time he owned a bar and had blood contact due to fights in the bar a few times. He also used cocaine nasally in the late 70's/early 80's, which is a source of infection. The list of risk factors grows all the time.

Re: drinking, alcohol acts as an accelerant for HCV damage (alcohol raises iron levels, which encourages the virus), and tests indicated he may also have had genetic hemachromatosis, a common and often unidentified disorder that leads to high iron levels and liver damage. Recent research suggests that in the absence of HCV or other disease factors, drinking itself does NOT lead to severe liver disease.

My sister is in remission from HCV she contracted in the mid 80's from 2 units of blood after a miscarriage. She got sick before they identified the virus. During the 5 years between symptoms and HCV antibody test she was consistently accused of being an alcoholic in denial, yet she did not drink. The hep-C support group we attend at times (I am negative, BTW) indicates it is common for people to be assumed alcoholic, although increasingly they are getting tested.

I have no doubt that alcohol contributed to severity of disease and his death, but the label of alcoholism did as well. It delayed steps in the transplant evaluation process--but a few years ago would have prevented consideration altogether.
 

ellencee

Senior Member
SRMcMahon
The only part of your posts on which I wish to comment is in your last post when you stated, "the label of alcoholism". I take slight offense to that. Physicians and nurses and other medical/healthcare providers do not label a chronically, heavy alcohol abuser as an alcoholic; the person is diagnosed as an alcoholic and there is a HUGE difference in a label and a diagnosis.

Any alcoholic is at risk for liver failure, cirrhosis, Hep C, and a host of other related diseases. Once a person is diagnosed as an alcoholic or chronic abuser of alcohol, medical decisions and treatment have to take that into primary or secondary causation factors for whatever current health condition exists.

You asked about closure. The only way you are going to achieve closure is to accept that your husband was an alcoholic, a drug abuser, and lived a rough lifestyle that exposed him to Hep C and other chronic, debilitating, or morbid diseases. I believe that you loved him and still do. In order for you to honor his life and your love for each other, you have to honor him for who he was and for what he did to himself and to you and your children, if you have any.

In order for you to have closure, you have to forgive him for being so hard on his body that he died early and forgive him for bringing upon himself and you and your children, a most painful and horrific end to his life.

Once you can face your anger or disappointment in his bringing this onto himself and onto you, you can begin to find true closure.

I can tell by the way you lightly mention his drug usage, his fighting, and his alcohol abuse, that you are still in the role of enabler and co-dependent. He brought this upon himself; whether or not he knew what he was doing would end his life this way, he and only he is responsible for his actions and ultimately the method of his death.

Until you can say it and mean it and love him anyway, you will not find closure. Until you can say it and mean it and love him anyway, you will keep searching for the man you wanted him to be and not the man he was. Until you can love him and grieve for him as the man he was, you will not find closure.

I believe you are closer than you think you are to being able to reach these conclusions on your own and you are searching for someone to carry this responsibility for you and tell you in undeniable terms that your husband is responsible. Consider it done, or at least started.

You have my deepest sympathy for all that you have endured and so does your husband. I wish you the best in your efforts to find the truth in your emotions towards him and in your love for him and in accepting the closure that is nearly achieved.

EC
 
S

SRMcMahon

Guest
Quote The only part of your posts on which I wish to comment is in your last post when you stated, "the label of alcoholism". I take slight offense to that. Physicians and nurses and other medical/healthcare providers do not label a chronically, heavy alcohol abuser as an alcoholic; the person is diagnosed as an alcoholic and there is a HUGE difference in a label and a diagnosis.
endquote

"alcoholism" is not a diagnostic term (check any psychiatry textbook). it is, however, a label, and is often used in a very dehumanizing way. (for more info, look at website for SMART Recovery). Also, I've never accepted the concept of "enabler" or "codependent", because that is in conflict with the idea that the person is responsible for his own actions. I did take care of myself, and for most of the years we were together we had different households. That does not eliminate the chaos of alcohol abuse, but it made my life far better. The deal was he had to be sober for a year before I would marry him. A couple of years ago, he had reached that point. We really did have a couple of very, very special years, so I'm not as conflicted as I might have been otherwise. More such years would have been nice, though.
 

ellencee

Senior Member
Alcoholism: A chronic progressive, sometimes fatal disease marked by chronic excessive intake of and dependence on alcoholic drinks.
Alcoholism has been defined as having the following characteristics:
1. Chronic and progressive-- physical, emotional, and social changes that develop are cumulative and progress as drinking continues.
2. Tolerance--brain adaptation to the presence of high concentrations of alcohol.
3. Physical dependency--withdrawal symptoms occur from decreasing or ceasing consumption of alchohol.
4. The person with alcoholism can not consistently predict on any drinking occasion the duration of the episode or the quanitity that will be consumed.
5. Pathologic organ changes can be found in almost any organ, but most often involve the liver, brain, peripheral nervous system, and the gastrointestinal tract.
6. The drinking pattern is generally continuous but may be intermittent, with periods of abstinence between drinking episodes.
7. Social, emotional, and behavioral symptoms and consequences of alcoholism result from the effect of alcohol on the function of the brain. The degree to which these symptoms are considered deviant will depend on the cultural norms of the society or group in which the person lives.
(Definition prepared by the National Council on Alcoholism/ American Medical Society on Alcoholism, Committee on Definitions.)
 
S

SRMcMahon

Guest
definition is not diagnosis. the question is, what code is used on the claims form? there's a lot of misinformation about substance use and abuse out there, a lot of pop "knowledge". you might take a look at some of the current guidelines for diagnosis and treatment of chemical dependency disorders. you also might take a look at a book entitled "addiction, choice, and change".
 
J

JackSchroder

Guest
MaMahon: You are right. Alcoholism is not a diagnosis. It is not a disease, but is a condition. Doctors and their allies love to "diagnose" conditions about which they know little. But then, the medical mode is diagnosis and treatment. How many alcoholics can be treated with pills or surgery?
Anyway, hang in there. Closure (not a diagnosis) will come with time, and you seem to be on that road.
 

ellencee

Senior Member
SRMcMahon
You are only fooling yourself if you believe that alcoholism does not present a set of conditions, classified as a diagnosis, and severely affects multiple body systems.

It would be negligent for any physician or healthcare provider to overlook the effects of alcohol abuse on the systems of the body. It would be negligent for any physician or healthcare provider to fail to include liver destruction, weakened immune system, brain deterioration, circulatory impairment, etc. when assessing, diagnosing, and treating a person with longterm alcohol consumption or alcoholism.

Jack--You do not know what you are talking about in this matter. Please refrain from giving this poster totally inaccurate medical and, or healthcare information. You are hurting the poster when you do so.

EC
 
S

SRMcMahon

Guest
ellencee--I see you are a certified nurse consultant, so you ought to know that when med treatment is concerned we are talking about diagnosis and treatment, not philosophies of addiction, regarding which there is professional debate. We are also talking about standards of care. Given the existence of debate, one might look in various places to determine standards of care. Nobody has said "12 steps" here but I think some of the 12 step philosophy is lurking in the responses I see here. Now, JCAHO is one of the recognized agencies for health care accreditation in the US, and JCAHO has specific policies requiring health care providers to acknowledge and discuss the range of treatment options for alcohol dependency. Federal agencies (I can't remember which agency has published the guidelines I am thinking of, but if anyone is interested I have it filed away somewhere) call for such a range to be available. Many VA hospitals now offer specific alternatives to traditional 12-step based treatment. A few federal appeals courts have issued rulings prohibiting government agencies from linking services or criminal sentencing to 12-step programs, since the 12 steps represent a religious belief. Alternative treatment is for that reason growingin penal systems.

I notice a tendency in these pages for people to proclaim this, that, or the other without giving their argument. What is saddening to me is this: Ellencee, you may be working under some widespread but (based on sources above) erroneous assumptions about the nature of chemical dependency and appropriate treatment, and using that knowledge in your professional capacities with regard to medicine and the law. Can't remember if you're in California, but if so you're in one of the federal circuits under rulings mentioned above. As a professional, you might want to expand your knowledge base.

what is saddening is that such assumptions do at times impede the effective delivery of medical care to sick people.
 

pele

Member
Just my two cents, for whatever they are worth, but you seem to have strayed away from the heart of the problem, and that is, your husband put in a lot of years abusing his body with alcohol and drugs. Later on in life he got smart, but it was too late. I think that is the bottom line. I think you are grasping at straws, like most of us do when someone we love dies, we can torture ourselves with the "what ifs". I think you should sit back and think about the time you did have with your husband, that he did have a couple of good years with you, without you and your demand that he get sober, he may not have had those years. I am saddened at your loss, you are early in the grief process and you have to know that it takes time to work your way through your grief. You never really get over it, but it does get easier to deal with. Pele
 
S

SRMcMahon

Guest
no, not the heart of the problem for the original post. the problem was this: he had a serious illness with high mortality rate. he was not correctly diagnosed by several doctors who according to known standards of practice should have at several points conducted certain blood tests but did not because they had already assumed his symptoms were only alcohol-related. these tests were readily available and not expensive. once he was correctly diagnosed he had approximately 70% 3-year survival rate. Nothing he had done or not done during the previous 5 years (outside of being correctly diagnosed and treated with antivirals) had any significant impact on how sick he was at the time he was diagnosed. once diagnosed, he was not immediately a candidate for several reasons, one being financial: transplants are simply not provided to people without financial qualifications. due to the tremendous shortage of organs competition for those available is intense. we solved the financial problem while he continued to get evaluation and maintenance treatment. because of medical provider changes over which we had no control, he went for some months without access to medical case management. Within that situation, there were definitely instances of poor medical decision making and known medical errors. the original question was about malpractice, and would have been the same question regardless of whether he was "responsible" for being ill. As far as I know, malpractice suits do not look at whether a person deserved to be sick (cross examination probably does). the questions related to malpractice (an infectious disease specialist HAS bluntly told me I should sue doctors who did not do blood tests for years, and said they would simply settle, but I also had to decide if that is what my husband would have wanted. I asked him from time to time, but he really had no answer)

1)separating specific acts of poor medical care from an illness that ultimately entailed involvement with multiple independent healthcare systems with no individual doctor or system actually responsible for overall treatment and that had a high mortality rate--it would be the same question no matter what the disease happened to be--would there be clear liability?

2)since I don't know anybody who has ever sued a doctor for malpractice, I didn't know what the experience is like for people who do. legal proceedings consume emotional, physical, and financial resources (that's why "legal issues" is an item on life-stress index assessments!) and address only certain issues, not "human condition" issues.

(I have my own faith organization, my own brain, my own friends and family, and my own therapist to help me with the non-legal questions, but the decision of whether to sue is part of the legal question).
 

ellencee

Senior Member
SRMcMahon
Let me put it to you this way: Your husband committed suicide and chose a very slow method.

No medical professional breached duty or committed any act of negligence that would have made any impact on the outcome or the duration.

There is no viable claim of malpractice or negligence.

Your husband is the only one who caused this mess and by doing so, he cost the taxpayers hundreds of thousands of dollars in futile attempts to provide him some kind of relief and longevity.

I am not responding further to your insane accusations and totally out of touch with reality responses.

Your husband did this to himself, all by himself. Live with it.

EC
 
S

SRMcMahon

Guest
I'm guessing your legal consultation is for the defendants in malpractice?
 
J

JackSchroder

Guest
Ellencee:
If you can show me one alcoholic cured by a medical doctor using the medical mode, please do so.
Ortherwise shut up about your vast store of research and knowledge. I have far more experience and a much larger information base than you. I do not appreciate your insulting remarks.
Now bug off.
 
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