Thursday, April 28, 2011

Long-term Consequence of a Wrong Decision

I walked into my hepatitis clinic at the public hospital I was working at, to see the first patient on my clinic schedule was Marta.  She had cirrhosis of her liver due to her long standing chronic hepatitis C disease which she had acquired over 20 years ago as a teen-ager when she had shared a needle with her future husband so to experience LSD (a well-known illegal street drug).   She also had been a moderate drinker of alcohol.

Chronic hepatitis C is a viral disease of the liver which slowly attacks the liver and destroys it over time.  Patients who are untreated for it generally will progress from no liver damage (initial infection) to 80% of their liver damaged (definition of cirrhosis) after about 20 years.  It’s at this stage that patients have to be on diurectics to control their fluid balance and are at risk of dying from liver cancer, due to the hepatitis C causing cellular changes. 
There are many risk factors for this viral infection.  They include: intravenous drug use (illicit street drugs), having received a blood transfusion prior to 1991, being born of a mother with hepatitis C,  health care providers receiving needlestick injuries from know hepatitis C carriers, and tatoos.  If a patient drinks alcohol, this just exacerbates the liver damage. 

I knocked on the exam door and then went in. 
“Morning, Marta.  How are you doing this morning?”
“I’m okay, basically the same, I’m a little tired, and my abdomen is beginning to swell up again.  But I still have my appetite and I’m eating okay.  Oh, this is my 9 year old daughter, Anna.”
“Hi, Anna, I’m Sharon and I help take care of your mom.  I’m glad to meet you.”
“Hi.”
“Okay, Marta, let me listen to you, and check your abdomen, then we’ll go ahead and get your blood work drawn.”
“Okay.”
After doing my physical exam and finding that Marta had a small fluid wave (which meant that she had free floating fluid in her peritoneal cavity) and some return of pedal edema (swelling around her ankles), I went ahead and wrote out Marta’s lab request form.  I handed it to Marta and told her I would call her that afternoon with the results, for she knew the routine.  She would get her labs done, wait for my call at home, I would tell her the lab results and then based on her lab work, I would advise her on how to change her diurectic medications.

Marta was in the final stage of her disease, her liver was cirrhotic, scared down and barely functioning.  She had tried the currently accepted treatment for her chronic hepatitis C which involved a weekly injection of pegylated interferon and taking ribavirin twice a day.  Unfortunately she wasn’t able to handle the side effects and quit after six weeks.  This was partially due to her not having any family support to help her take care of Anna. 

Marta also had the viral genotype which was the hardest one to clear, for she was a genotype 1.  There are 11 viral genotypes known throughout the world, within the U.S,. providers typically come across either genotype 1 (very resistent to therapy), or genotype 2 or 3 (easier to treat and clear from the patient’s system). 

Four weeks later, she was back in clinic for her usual follow-up.  Anna was with her again.
“Hi, Marta, how’s it going? 
“Not so good.  I’m beginning to swell up a little bit and my ankles are also beginning to.”  As Marta looked towards Anna, she said, “Sharon I know I don’t have much time left, but I don’t want to leave Anna behind until I absolutely have to.  She’s only nine and she lost her father 3 years ago and now she’s going to lose me.  I still haven’t found anyone to raise her after I’m gone.  My parents have died and there’s really no relative that I would feel comfortable raising her.  I just don’t know what to do.”
“Hmm, well, Marta have you talked with Pam, the clinic social worker, maybe she can help you come up with some ideas?”
“No, I was trying to do it by myself.  So, I guess I should go talk with Pam.”
“That would probably be a good idea.   But what does Anna want?”  As I asked this question I looked Anna’s way and she was just sitting there quietly, with her head down.  I knew her mom didn’t have much time left before Anna would be left all alone in this world.
“We’ve talked about it.  She understands that I’m dying.  I just want to make sure she is taken care of after I’m gone.  Besides it’s too big of a decision for a little girl to make by herself."
“Well I’d agree with you there.  After you get your labs drawn, I think I saw Pam in her office, why don’t you go see whether she can help you out?”
 “Thanks.”
I watched as Marta and Anna left with her lab slip.  Marta’s terminal condition definitely weighed heavy on her mind.  I could only hope that Pam would be able to help her out.
I called Marta that afternoon and told her the results of her blood work.  I changed her diurectic medication dosing again.  Probably by next month’s visit I would have to start scheduling her for a paracentesis procedure in our gastroenterology lab.  Once she crossed that bridge into palliative care,   it wouldn’t be too long before Marta would end up in hospice care. 

Patients with cirrhosis can either stabilize out or continue to get worse.  Medicine doesn’t know which patients will continue to progress with their disease and which ones won’t.  Most patients will continue on down the slippery slope into liver failure, or liver cancer, both of which are terminal.  Patients in liver failure, end up with their skin/eyes turning yellow (from all of the bile build-up in their system), and ammonia building up in their bloodstream (which gives them confusion, unconsciousness, nausea, vomiting).  Ammonia build-up is addressed by having the patients take lactulose which binds to the gut ammonia.  It’s at this stage that patients are given the option of having paracentesis procedures done (draining off abdominal fluid by inserting a large bore needle into their abdominal wall).  But these procedures are only palliative, they can only be done a few times before the patient will either die of infection, liver failure or both.    

The next day as I was seeing patients in the clinic, Pam came looking for me. 
“Sharon, I need to talk to you about Marta.”
“I assumed that’s why you were here.  What do you need to know?”
“How much time does she have?”
"Probably a few months at best.”
“Well, Marta and I talked at length yesterday.  She really doesn’t have any relatives that she wants to leave Anna with.  So I asked her whether she had any close friends that would be willing to raise Anna, and after thinking for quite some time, Marta came up with a friend’s name.  She told me that they had grown up together and then after her husband died she lost contact with her.  Her friend though had finally made good, and moved out of the old neighborhood.  So I called this woman and she called me back this morning.  In fact I just got off the phone with her.”
“And?”
“Well, she and Marta were good friends.  In fact she was Marta’s bride’s maid at her wedding when she was 20 years old.  She told me that she and Marta had gone their separate ways after Marta’s husband died because she saw the choice that Marta had made and she knew it wasn’t good.  She’s worked very hard to get a good job that pays well, that she enjoys.  She lives out in the suburbs and teaches social studies at a junior high.  She’s never married and remembers Anna quite well.  She’s going to call Marta and set up a time to go see her.  And she was willing to at least think about adopting Anna.  So, at least
 it’s a start.”
“Well, it sounds promising, I hope something works out for Marta.”
“I’ll let you know something when I find out anything.”
“Thanks, Pam.”

Clinical social workers are very important to medical care of patients.  Many times there are social issues, financial issues, family issues, work issues that affect the patient’s well being.  We as medical providers can not address these issues with our patients in the clinic, due to time constraints.  That’s where social workers come into play and work with the patients to acquire resolution of the issues affecting their patient care.

Marta returned to the clinic in a month and I could tell things were not well with her.  Her face was looking ashen and her breathing was uneasy.  Anna was not with her.
“What’s going on, Marta?”
“My abdomen is swelling more, I’m having a hard time breathing, my feet are swollen up and I’m nauseated.”
“Okay, did anything set this off?”
Marta started tearing up and through her tears she said, “I’ve just been so concerned about who is going to take care of Anna when I’m gone, I broke down and had some alcohol this weekend. “
“Uh-oh, that’s not good.”
“I know, I’m sorry.”
“Well, I think you’re going to have to be admitted for a paracentesis, so to drain the fluid off of your abdomen and then you’ll probably be started on lactulose.   Who’s taking care of Anna, right now?”
“She’s at school.”
“Okay, well then let me call the in-patient attending, tell him what’s going on, then I’ll have to send you down to the urgent care clinic to await your bed assignment.  Can anyone pick Anna up after school, because you’ll probably be in-house for a few days?”
“I can call my neighbor, she can do it for me.”
“Okay, well you can use this clinic phone to contact her, while I go call the in-patient attending.”
Thankfully the neighbor was able to take care of Anna while Marta was an in-patient for 3 days.  Three days later, Pam came and found me working in the clinic.
“Sharon, I’ve talked with Marta again and her childhood friend.  They re-connected about two weeks ago and her childhood friend is willing to adopt Anna.  Anna has spent the past two days with Marta’s friend and they get along really well.   So Marta is going to sign the legal papers for her friend to legally adopt Anna once she’s gone. “
“Oh, now that is good news, thanks, Pam.”
I saw Marta back in clinic the following week.  She was doing okay, taking her lactulose three times a day, and both of her diurectics.
“Hi, Marta, how’s Anna doing?”
“She’s fine, she really likes my friend, they seem to be getting along really well.  Pam is getting all of the legal paperwork in order, so I should be able to sign everything within about two weeks.  Oh, and Sharon, after I sign all of the necessary paperwork next week, I don’t want any more of all of this, medicines, having my abdomen stuck with a big needle to drain off the fluid, none of this.  Pam talked to me about hospice, and that’s what I want.  I want to be able to die at home with Anna at my side.  Okay?”
“As long as that is what you want, Marta, I’m all for it.  Do you know whether Pam has actually contacted the local hospice or not?”
“I don’t know.  I have to meet with her after I see you.”
“Okay, well I’ll let Pam get the paperwork moving forward for your hospice care, if she needs anything she’ll come and find me.  Okay, now according to your in-patient discharge paperwork it says that you are scheduled for a repeat paracentesis next week in the gastroenterology lab.  Am I to assume you want to keep that appointment?”
“Yes, after that the paperwork should be ready to be signed and I’ll go into hospice care.”
“Okay, well then, let’s get your labs drawn and let you go see Pam.”
“Thanks, Sharon.”
Marta came in for her paracentesis the following week, two days later I heard from Pam that she had signed all of the legal paperwork for her childhood friend to adopt Anna.  Pam informed me that Metro Hospice was involved and Marta was at home where she wanted to be.   Marta stopped her medicines and four days later she quietly died, having spent most of this time unconscious of her surroundings. 

Thankfully there is now a new treatment for chronic hepatitis C which involves a viral inhibitor medication which is taken along with the pegylated interferon/ribavirin medications.  It has a higher sustained remission rate over the older treatment program of pegylated interferon/ribavirin.  Also patients who are now showing up in clinic to be taken care of for their hepatitis C no longer have the risk factor of blood transfusions, seeing that they would have to have been exposed 20 years ago or longer.  The risk factor for tattoos have also been addressed by the State Public Health Departments.  All tattoo artists now have to use sterile needles on each and every customer.