Is There a Healthcare "High Road" When You Are Chronically Ill? #NHBPM

Lately I've been wondering if there really is a "high road" when it comes to dealing with the health care system when you live with chronic illness, especially in light of all the problems that emerged during my recent Hepatitis C treatment at the UCLA Health System.

What is the "high road?"

high road

n. 

1.	a.	The easiest or surest path or course: the high road to happiness.
	b.	The most positive, diplomatic, or ethical course.
2.		Chiefly British A main road; a highway.

The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2009. Published by Houghton Mifflin Company. All rights reserved.


In light of what the words "high road" mean, I can say with certainty that my Hep C treatment didn't follow this path!  So naturally, my next question was "Well, why didn't it?"  After much contemplation, I now think I understand "why not."  Ironically, the answer is in the name of my medical care provider network of choice: system.

What Is a System?

At its core, a system is an organized, purposeful entity that is made up of many interconnected and interrelated pieces.  In health care, some of these pieces include: doctors, nurses, allied health professionals, administrators, insurance companies, health care professional licensing boards, pharmaceutical companies, medical technologies, office space, information technologies, politicians and the government.

The people who are part of the health care system are bound by a mission and specific set of beliefs, principles, goals and objectives, procedures, methods and routines.  Within the system there is a unique culture with norms for social conduct, tiers of hierarchy and privilege, boundaries determining who is in and who is out of the system, standards for conflict resolution and mechanisms for how feedback is solicited, received and processed.  People carry out specific activities, perform certain duties and solve particular problems that fit with the mission and goals of the health care system.

So Where Do We Fit in the System?

In the simplest of terms, we are community members who are sick or injured and enter the system as "patients" to receive medical care so we can be restored to health and return back to the community.  To us, health care is a collection of services given to us in an effort to change our state of health.

Another way to look at this is that patients are inputs into, and healthy people outputs from, the health care system.

Which is where I think the problem arises for those of us with chronic illness.  We are not simple inputs.  We present with a persistent state of illness, with health problems the system can't cure and often has trouble diagnosing.  At best, it can only manage our health; at worst, it throws its hands up in frustration and resignation because we just don't leave the health care system as a successful output. That's because the health care system:

• hasn't figure out an appropriate model of care for us that meets our unique needs
• hasn't expanded its definition of  health to include concepts like quality of life and palliative care which is what we are seeking

So if health care is a system, and we patients are the inputs and outputs of that system, what might the high road in health care look like?  Let's go back to the definition to try and answer this question.

The Easiest or Surest Course

Based on my experiences in the health care system, here is what I think the "easy and sure" health care high road looks like:

• patients accept that doctors and other health professionals in the system are the experts
• patients present with medical conditions the doctor can easily identify with diagnostic tests
• those medical problems can be treated and cured with existing medications or procedures
• patients are compliant with medical treatments and instructions
• patients have medical insurance and/or cash on hand to pay medical bills
• patients leave the health care system healthier than they entered it 

I think we can all agree that we have, at some point, tried to follow this path.  In fact, when I first became chronically ill, I really, really wanted my doctor to find something wrong with me that could be diagnosed AND treated successfully.  But alas, I don't have conditions that can treated and cured, only ones than can somewhat managed, an outcome me and many of my doctors aren't entirely happy with.

So no, I don't think an "easy and sure" path through health care exists for persons living with chronic illness.

The Most Positive, Diplomatic, or Ethical Course  

O.K., let try again using the alternate definition.  Despite my long 24 year history with the system, I'm not quite sure what health care thinks is "most positive, diplomatic, or ethical," so I am going to take the liberty of defining these variables myself:

Positive

• educating myself about my chronic health problems so I participate in my health care as an empowered, engaged, equipped and enabled patient
• accepting that my doctors may be limited in terms of what they can do for me
• giving balanced feedback about what is and isn't working for me in regards to the care I receive

Diplomatic

• using active listening skills and working to build a successful patient-provider relationship
• reminding my health care providers about all my chronic conditions
• letting my doctors know about my other health providers, what I see them for and what treatments they provide me
• asking for a second opinion or referrals when a doctor doesn't seem to be able to help me

Ethical

• rejecting substandard medical care and watching out for medical errors
• reporting problems and giving feedback to the health care system
• being a participant in my medical care and exercising my right to have the final say on all medical decisions
• asking for reasonable accommodations as afforded to me by the Americans with Disabilities Act 
• affirming my right to appropriate medical care so I do not suffer needlessly

Wow, that feels much better!  And I am happy to say I have definitely taken this high road and this is definitely the way I want to continue to approach my ongoing healthcare.

I also learned that someone who embraces this viewpoint actually has a name: they're called an e-patients.  I found this article over at ClinicalPosters.com--How Empowered Physicians Can Embrace e-Patients--which discusses in-depth this new category of modern patient.  You'll also be encouraged to know that the Society for Participatory Medicine thinks we e-patients can help heal the healthcare system.

That said, my personal experiences suggest that that the health care system as a whole isn't ready for communicating with e-patients just yet.  Neither does respected physician blogger Kevin M.D. 

But that isn't going to stop me from continuing to travel down this high road.  Maintaining what remains of my precious health is so much more important to me than conforming and letting the health care system squish me like a square peg into a round hole.

That's because I am an optimist...and a fighter, despite the myriad challenges. I believe what Dr. Howard Richards says:

The phrase "fighting the system" alludes to the old folk saying "You can't fight the system." This saying expresses an intuitive sense that whoever wins, whoever loses, whatever group or class wins, whatever group or class loses, the system always wins. The system has remarkable endurance; it successfully defies attempts to change it, and it punishes those who try. Nevertheless, I am saying, you can fight the system if you know enough about (it).

Now that we all know a little more about the nature of the health care system, we can all be encouraged to fight on, not just for healthcare transformation, but for a healthcare revolution that embraces new ways of thinking about health and medical care and replaces the existing norms with more principled and progressive thoughts, ideas and actions.

That's my opinion.  What do you think?

PFAM - The Fright Files: Stories of Medical Mistakes

Look, I know the supernatural is something that isn't supposed to happen, but it does happen.

~Dr. John Markway, The Haunting, 1963  

Halloween is here once again, the time of year we dress up like ghouls and goblins, head out and ask total strangers for a "Trick or treat!" Having grown up in the era of razor blades in apples, when hospital radiology departments offered free x-rays to ensure your haul was safe to eat, this annual tradition still seems risky to me.  But it doesn't stop the trick-o-treaters from coming to my door every year...

While Halloween is just one day out of the year, the real truth is that tricks and treats happen to us all year long.  Take health care for example.  We keep consuming health care even though, every 7 days, the number of hospitalized patients killed by medical mistakes would fill 4 jumbo jets.  Dr. Marty Makary says that if medical mistakes where a recognized cause of death, they would be ranked number 6, right after accidents and before Alzheimer's disease.

Now that is some really scary stuff.

While it is true that dead men, and dead patients, tell no tales, their families do, and rightfully so, through the media, lawsuits and formal grievance procedures.  But what about the rest of us, fortunately spared an untimely death, but still receiving care that is erroneous, sub-standard or unneeded?

According to ProPublica, an independent, non-profit investigative journalism newsroom, most of the patients affected by medical mistakes do not file formal reports about them and they think this is a problem for all of us.  I found their article Why Patients Don’t Report Medical Errors to be an informative primer on this subject.

Since one of the barriers to reporting errors is knowing who to contact to file a formal grievance, I recently put together a resources list for those living in the United States here.

So I asked participants in this month's Patients for a Moment (PFAM) blog carnival to be brave and courageous. I wanted them to write about the ways that health care has scared them, injured them or let them down.  I hope they inspire you to do the same, because I think to get better health care we all need to be empowered to discuss every aspect of it: the good, the bad and the ugly.

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Poor Iris!  Some pretty scary things happen with her medical care when she was in her 20's, long before she was diagnosed with lupus.  Seems her doctors and other health professionals should have given her more information when they obtained her consent to carve her up and stick a tube down her throat.  Read Medical Horror Stories over at Sometimes, It is Lupus.
         
For some of us, nothing causes as much dread and foreboding as anticipating "the talk" from our doctor about how we need to lose weight.  Kathy from FibroDAZE advises caution though if you doctor suggests taking newly-approved Qsymia and Belviq to help you shed the pounds.  These drugs have the potential to cause some pretty horrific side-effects, which has got Kathy thinking Obesity Has Gotta Be Healthier Than This.

Witches are scary, with their evil spells and potions, like the one from the fairytale Snow White who said, "Take this apple, dearie. Go on. Have a bite."  Duncan Cross knows what is even scarier.  It's when a witch is disguised as a doctor and encourages you to take a drug that turns you into a...well, you'll have to go find out:  Things I Blame on Prednisone. 

Maniacal doctors experimenting on patients, medical procedures conducted without anesthetic and bone-chilling screams; these things don't just happen in the movies, they can happen to you at your next doctor's visit.  Shruti of Lifestyles of the Ill and (mostly) Blameless shares her true story about her encounter with "Dr. Frankenstein" in Tales from the Emergency Room Crypt: Spinal Tap.  It sure sent shivers down my spine!

Oh the creatures of Halloween--zombies, vampires, werewolves and witches--each doing something different yet equally frightening, like eating brains or drinking blood. Did you know there are over 60 different kinds of doctors practicing in our medical system?  They all do something different too and sometimes you have very good reasons for needing more than one of them as Rachel points out in her post #NHBPM - How ridiculous! at Tales of Rachel.

Let me be clear here: it's not just doctors making mistakes or ignoring patient feedback.  In Sometimes The Truth Is Scarier Than Fiction: A First-Hand Account Of A Medical Mistake, Leslie tells the tale of a nursing error that landed her in the hospital for 3 days.  Yikes!  But she says that's not even the most troubling part of her story.  Eek!  See for yourself at Getting Closer to Myself.

Restricting your T.V. time has to be one of every kids' nightmares, especially when that Halloween marathon of Twilight Zone episodes is about to begin.  But can you believe this punishment got imposed on Rachael all because of a drug side-effect?  Read this truth-is-stranger-than-fiction story and its sequel at Offbeat Follies: Mistakes of the Medicinal Kind and The Ghost of Douchebags Past.

Halloween tricks--we all hate them. We hate health care trick too.  Raise your hand if you, like Sharon of After Gadget, have even gone to a doctor's office that wasn't ADA compliant.  What about a doctor who refused to treat you?  You can all put your hands down now and proceed to Waspish Wednesday: Yes, Lyme DID Cause This.

Who doesn't fear that Halloween staple, the haunted house?  Unfortunately haunted houses aren't the only places where weird, shocking, annoying and unexplained things happen.  See Selena's reflections on health care disappointments in Lessons I Learned as a Patient in the UCLA Health System here at Oh My Aches and Pains!

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That's all for this edition.  I hope you have as much fun reading this as I did putting it together.

Please join us again next time!  Amanda at Crazy Miracle is hosting the next edition, so please visit her blog and look for her call for submissions at the beginning of November.

We will also be looking for hosts for the carnival for next year, 2013, so please consider volunteering.  Contact Leslie if you are interested.

Want to learn more about PFAM?  Check out the website and Facebook pages.

My Hep C Treatment: A Mad Dash for 2nd Opinions

I promise this image will make sense
when you get to "the kicker" below.

The story of my Hepatitis C treatment continues...

A Mad Dash for a Second Opinions

So here I was in week 20 of my treatment, discovering my hepatology team made a medical mistake and realizing that I needed a second opinion...or two!

My first thought was How crazy is this?

So let's start with a re-cap. I told you last time that Hepatitis C treatment is an all or nothing proposition. Once you start you have to keep going until you are done.

 Along the way, you get side-effects, lots of side-effects, many similar to the side-effects people get while undergoing cancer treatment. You can read about my side-effects here and here.

But unlike cancer treatments, where you get a little time to recover between chemotherapy sessions, Hepatitis C treatment is relentless. You take your medications every day, every week, every month for up to 48 weeks with no break, no respite and absolutely no stopping.

This treatment has real potential to wear you down and grind you into the pavement.

So was I in any shape to start looking for a new doctor at week 20? Absolutely not!  But I dug deep and did it anyway because my gut said I needed to...

Santa Monica-UCLA Medical Center: Part One

So it's week 20 and I thought myself a bit lucky when I found another hepatology in UCLA Health System at the Santa Monica-UCLA Medical Center who had almost immediately availability. And I went to the appointment with fingers-crossed that his separation from the UCLA Westwood Medical Center meant I might be able to get a true, independent second opinion.

Turns out, I was seeing the new Chief of Hepatology who had only been hired a few months prior. It seems that no one knew he was there yet.

 We talked and identified two issues: 1) my lack of a week 4 viral load and that fact that my week 3 viral load was detectable at less then 43 IU/ml and 2) whether my three weeks of prior treatment in 2007 meant I should have automatically received 48 weeks of treatment from the start.

By the end of the appointment, I did not have any answers to my questions.  Instead he admitted that he was not an expert in Hepatitis C treatment. He did, however, have several colleagues involved in Hepatitis C research that he could consult on my behalf. He also told me that he had trained my current hepatologist and would call and speak to my doctor.

To get all this done, he requested that I come back in a week for his answers.

I left with an uneasy feeling about this doctor. A little voice told me that his past connection to my current doctor meant things could definitely go either way: surprisingly well or horribly wrong.

Part Two

A week later, week 21, and I am back again seeing the Chief of Hepatology. I've already been to see my current hepatologist on Tuesday and he absolutely refused to extend my treatment past 24 weeks.

So on this Thursday the Chief tells me he has spoken with two experts who both agreed that 24 weeks of treatment is enough.  Only he doesn't tell me who these experts are and I wonder if he conveyed my medical information to them accurately.

Next he tells me that Vertex, the maker of Incivek, is currently conducting clinical trials to prove that just 12 weeks of triple treatment is enough for someone like me.  That's all well and good, but I am not part of that clinical trial, am I?

Then he talks about Gilead, another Hepatitis C drug maker, and their wonder drug that will be approved in 2 years. He gushes that this latest generation of antiviral drug will make Hepatitis C treatment more successful and easier: so easy that primary care doctors, not hepatologists, will be the ones to prescribe and manage it.  I guess this is supposed to be my back-up plan...and I wonder if he owns stock in the Gilead.

I don't really want to hear about clinical trials and better drugs. I want my current treatment to be the very best it can be and get rid of my Hep C NOW. Even so, I do try to put my skepticism aside and believe him.

But Then Comes the Kicker...

After the discussion, he asks to do a physical exam. I am laying on my back on the examination table waiting for an abdominal exam. My husband and another doctor are in the room with me too.

As he is standing right over me, looking down on me, he says, "It seems you are a patient that wants to direct her medical care and tell her doctors what to do. This is why medical doctors often don't get very good treatment because they are trying to micro-manage their own medical care."

He meant it as an insult, my friends, and I got a glimpse of how he really felt about me being my own best patient advocate.

I walk out discounting this doctor's advice and appalled at his lack of professionalism. I was so furious I tweeted his words out to my followers on Twitter while on the drive home.  My tweets inspired this blog post by a fellow blogger at Fightin' the Fibro.

Another Week, Another Second Opinion

It's now week 22 and I go to get a second second opinion with a hepatologist at Cedars-Sinai.

Right off the bat I am impressed when this doctor takes his time with me. He even compliments me on having all my records together and being knowledgable and informed about my treatment and Hepatitis C. He even takes the time to explain aspects of my treatment to me that the UCLA hepatology team never did.

That said, he did ultimately come to the same conclusion: that my treatment length should be 24 weeks. However he explained to me in detail how he arrived at his decision which really helped me to accept it. Let me share some of those details with you:

Yes, he did think the timing of the viral loads was important in determining treatment length. But of course I don't have a week 4 viral load and there is nothing to be done about that now. He is assuming I would have been undetectable somewhere between week 4 and week 7.

He went on to say that the anemia I've had since week 2 does predicts a better treatment response. Plus the way he talked about how he would have managed my treatment-related anemia differently actually made me wish he had been the doctor treating me this time!

Overall, he does think I have responded really well to treatment and he is very confident that the treatment I did receive has a very good chance of working.

Most importantly, he told me that my interferon-related mild retinopathy is a non-issue, especially since it had almost completely resolved at my last eye exam. That news alone was worth going to this consultation. What a relief to know he does not think that, during the remainder of my treatment, I am going to wake up blind one day.

His main reason for wanting me to take the risk of stopping at 24 weeks is the promise of newer antivirals that will have significantly fewer side-effects. In his mind, if my Hep C does come back, retreating in 5 years when these drugs are approved by the FDA would be so much easier on me than extending my current treatment to 48 weeks now.

He did make it clear he won't take over my care now, but is willing to have me as his patient if I don't clear the virus in 6 months.

This hepatologist is a risk-taker. And I get it; my missing week 4 viral load does now add an extra element of uncertainty to my current Hep C treatment. I admit I didn't leave this appointment 100% happy about his advice. But ultimately I came see that I need to accept the things I can not change, make the best of a bad situation and just move on...

So after discussing his advice at length with Robert (who has been with me at all my Hep C treatment appointments) and sleeping on his advice, I ultimately decided to follow it.

P.S. If you are so inclined, you can listen to my thoughts on my second opinion over at Cedars-Sinai by clicking here: Selena's Update on Her Hep C Treatment by SelenaMKI

That Brings Me to Today...

It is now week 24 and I am scheduled to end my Hepatitis C treatment tomorrow, Thursday, August 9th. I take my last two hot pink "girl power" ribavirin pills at 5 PM.

Unfortunately I won't know for sure if this treatment has been succesful until 6 months after I complete it, which will be in February 2013. The doctor at Cedars said a good predictor of success will be the viral load I will have drawn 3 months post treatment, which will be in November.

I also filed a formal grievance against my UCLA hepatologist two weeks ago with the UCLA Patient Affairs Department.

So where does that leave my post-treatment follow-up?  I don't have a new hepatologist and I certainly don't want the stress of going back to see the old one.  So I am headed back to my primary care doctor at UCLA on August 20th to discuss this further with her.

I've kept my primary care doctor in the loop with email updates on my treatment over the past six months.  I have a very good rapport with her and I know she can order my labs, examine my belly and manage my remaining side-effects easily and more effectively than the UCLA hepatology team did. Yes, it might mean extra work for her, but she has already been much more involved in my Hep C treatment than I ever imagined she would have been.

Hopefully my primary care doctor can save the day and successfully guide me through my post-treatment recovery time.  If not, never fear, I do have a Plan B. After all, us sick chicks need to be prepared for all possibilities, right?

How My Hepatitis C Treatment at UCLA Went the Wrong Way

I should start this post by explaining that Hepatitis C treatment isn't something you can stop and restart.

Because you are attacking a virus, once you start you can't stop until 1) you have complications that end your treatment or 2) you complete your course of treatment. Because you are attacking a virus, you have to be as close to 100% perfect as possible when taking your medications. Every little misstep in your treatment, skipping a dose or taking it late, allows the virus to build resistance to the medications you are taking, which might mean the drugs stop working.

Talk about pressure!

So worst case scenario, if I don't remain undetectable 6 months post treatment, I can never take Incivek again or its cousin Victrellis because my virus will be immune to both of them.

Now that you know a little more about the nature of Hepatitis C treatment, you'll understand why I was so concerned three weeks ago when I realized my hepatologist at UCLA didn't follow the Incivek treatment protocol.

Yes, my doctor made a big mistake and it was me, the patient, that discovered it.

Discovering a Big Mistake at Week 20

I was talking to a friend back on July 10th.  She shared how she went for a follow-up appointment and her doctor asked her if she wanted to end her Hepatitis C treatment at 24 weeks.  My friend had learned from Vertex, the manufacturer of the drug Incivek, that if your viral load is detectable below 1,000 IU/ml at week 4 and/or week 12, your total treatment time should be 48 weeks (see Table 1 below.) 

Table 1
Click on the image above to see it full size.

Having done her homework, she informed her doctor that she couldn't stop at 24 weeks because her week 4 viral load was still detectable.

Like my friend, I have been treated with the triple cocktail of Incivek, Pegasys and ribavirin. If you recall back on March 28th, I shared with you my week 3 viral load, which was less then 43, meaning it was still detectable. As I compared my situation to hers, I realize that my doctor had made a huge mistake: he neglected to draw a week 4 viral load on me!

I panicked and wondered, "How could my doctor decide my treatment length should be 24 weeks without my week 4 viral load?"

A Bad Doctor-Nurse-Patient Relationship

Not my actual doctor and nurse,
but they could definitely be stand-ins.

Now before I started treatment, I thought I had a good relationship with my doctor. But then the hepatology nurse came into the picture...

At my education session on February 23rd, she presented herself to me and my husband as an "expert." She told us about the numerous clinical trials she had been involved in with Hepatitis C medications and remarked how she told the drug companies how their medications should be used. She talked about treating Hollywood celebrities who had Hepatitis C (no, she didn't drop any names) and knowing everyone at UCLA from "the chancellor to the janitor."

When I asked her questions about the treatment I was about to begin, she seemed annoyed with me. I got the sense that she wanted me to listen and she would do all the talking.  Then, when she was done, I started my treatment with my first shot of interferon.

I made it through the education session, but left feeling like this wasn't a good interaction. I know that if I had met her a few weeks prior to the start of my treatment I would have said "Thanks, but I've changed my mind." and walked out the door. But I met her on the day I was starting my treatment and, with the expensive drugs approved and in my hand, I felt like there was no turning back.

The Story of My Missing Week 4 Viral Load

Here is the perfect illustration of the communication problems I've had with the UCLA hepatology team--the story of how my week 4 viral load never got drawn:

I went to have my first viral load since starting Hepatitis C treatment drawn on Thursday, March 15th.  I went that day because the hepatology nurse instructed me to get it drawn at that time. She even wrote at the top of the lab slip she gave me "week of March 12." A few days later I was in the clinic seeing my doctor on Monday, March 19th.

The doctor and the clinic nurse practitioner saw my lab results in my chart. Yet no one said anything to me!

If someone had been paying attention, someone would have said, "Hey Selena, I see you had your viral load drawn at week 3. We really need to get one at week 4, so let me give you a lab slip and have you go back to the lab at the end of this week and have that test drawn again."

But no, that conversation never happened.

Another time to discuss this issue would have been at my appointment on May 29th. I had my week 12 viral load drawn earlier in the month on May 19th. This would have been the time my hepatology team would have reviewed my week 4 and 12 viral load results and used the treatment protocol (Table 1 above) to decide my treatment length.

Was there a discussion at my appointment with me about how they made their treatment decision? No. Instead I was simply told my treatment length would be 24 weeks.

It's the Patient Responsibility to Inform Doctors of Their Errors?

Here I was, the patient, discovering the my doctor had made a mistake at week 4.  And here it was, 20 weeks into my treatment. Given the past communication problems, I dreaded having to bring this mistake to my UCLA hepatologist's attention.

To prepare for my appointment, I pulled out the notes Robert took at my treatment education session on February 23rd with the hepatology nurse. Robert wrote, "a detectable viral load at week 4 or 12 might extend the length of my treatment." So clearly instructing me to get a viral load at week 3 contradicts what she told Robert and me in her education session. I was so upset that I hadn't caught her mistake!

Next I reviewed the prescribing information that came with Incivek (see table 1 above.) That was followed by a call to a nurse at the Vertex GPS Patient Guidance and Support program, who confirmed with me that, based on my lab results, my treatment length should be 48 weeks per their guidelines.

Finally, I called the UCLA Patient Affairs office. I request that they act as my advocate when I talked to my doctor. The representative I spoke with said it was my responsibility to bring this to my doctor's attention and declined my request. What I didn't know until after my appointment with my doctor is that  he called the hepatology nurse after talking to me and told her everything I said.

My Doctor's Decision

When Robert and I saw my hepatologist and the hepatology nurse on July 17th, my doctor got straight to his point and told me he would not extend my treatment beyond 24 weeks. So what about the missing week 4 viral load?  He told me that he assumed my viral load would have been undetectable at week 4. I told him I didn't feel comfortable basing my treatment decisions on assumptions. He just reiterated his decision; it clearly didn't matter what I thought.

I pushed back. I told him that in the absence of a week 4 viral load, I wanted the most conservative course of treatment, which I thought was my best chance at beating Hepatitis C--48 weeks of treatment. He came back with what he considered to be a very serious concern about extending my treatment: that the interferon-related retinopathy I experienced could come back and make me blind.

First let me say that when my retinopathy was first discovered at week 8, I told the hepatology nurse that permanent eye damage was not an acceptable outcome for me. But she assured me that there were things we could do to address and manage this side effect before ending treatment was considered. So I went for regular monthly eye exams to monitor the retinopathy and the team reduced my dose of interferon at week 13.

I actually though this problem was resolved since the retinopathy had almost completely disappeared at my last eye appointment on July 9th.

When the doctor left the room, the hepatology nurse stayed behind and explained to my husband that the monthly follow-up eye exams and the dose reduction were no longer acceptable ways to address the retinopathy. She was also concerned that my prescription insurance wouldn't cover my treatment after 24 weeks. So I asked her to give me the contact information for the pre-authorization department at my prescription insurance where she said she had been FAXing my viral load counts during my treatment.

She left the room for a few minutes, returning with a piece of paper in her hand with the information which she gave to me.

Needless to say, I left not believing a word my doctor told me. For starter, he didn't take any responsibility for my missing week 4 viral load.  He also didn't mention consulting my eye doctor when referring to his concerns about my retinopathy.  What he said and how he dealt with me greatly reduced his credibility in my eyes.

Lies, Lies, Lies

So I called the pre-authorization department at my prescription insurance when I got home from my doctor's appointment.  I learned from a representative there that the UCLA hepatology team had not been FAXing copies of my HCV viral load counts to them as they had requested. So I FAXed those results to him.

The next day, he presented my case to their clinical team, who immediately approved me for 48 weeks of treatment.

When I spoke to him again, the representative told me if they had been given accurate information throughout the pre-approval process, my insurance would have authorized 48 weeks of treatment at week 12.  He also told me that I was the very first patient to ever call and tell them that their doctor wasn't following the treatment protocol. But then he informed me that the prescription insurance company cannot make my doctor extend my treatment and he could only encourage me to get a second opinion.

When I informed the hepatology team the following day of my prescription insurance's decision, the hepatology nurse prompted called them and canceled my pre-authorization. She also informed the same representative I had spoken to that it was my fault that the week 4 viral load was not drawn.

Where That Left Me

As a wise person said to me during this horrible week, "It is worry that makes us sick." I didn't want to worry, I just wanted to slay the dragon Hepatitis C and do the very best I could at it.  It was then that I realized that the only way to get my treatment back on track was to get a second opinion from a hepatologist not associated with UCLA.

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That's all I have in me for today. I hate to leave you on a cliff-hanger, but I promise I'll be back again soon to tell you about the second opinion I got and how it helped get my Hepatitis C treatment back on track.

Related articles

• Update: Where I Am at in My Hepatitis C Treatment (ohmyachesandpains.info)

Does Your Doctor Owe You a Good Break-up?

On Valentine's Day, this sick chick I can't help but reflect on the number of doctor-patient relationships that I am currently managing.  In fact, I took a moment to jot them all down and I discovered that I am currently seeing 10 doctors.  Wow, that sure seems like a lot of doctors!

My Doctor-Patient Relationships

Now don't get me wrong.  Some of my doctors are great and I truly enjoy working with them to tackle my chronic health problems.  Others are so-so, and at the moment, I am settling for their care until I have the time, energy and ability to search for another doctor that is a better fit for me.

Then there are two doctors that are causing me some real problems right now.  Over the past 12 months, two key doctors in my medical team have suddenly and abruptly "broken up" with me.

My Recent Bad Break Ups

At the beginning of 2011, my cardiologist literally vanished.  I found out she was gone when I called to make a follow-up appointment.  The first support staff member I spoke with simply had no idea what happened to her.  When I was transferred to someone who did know, I was told she was on a sabbatical to finish writing a book.  When I called back several months later, I was told she switched to seeing hospitalized patients only.

Whatever the reason for her absence, she neglected to make arrangements with another physician to take over her patient load and to send out a letter explaining she would no longer be seeing her patients.

My pain management doctor is my most recent bad break up.  I started calling at the end of December to schedule a follow-up appointment and finally got a call back January 10th.  Her staff left a message saying she moved to Fresno and gave me the number to call for an appointment.

Needless to say, a four hour drive so I can continue to see her in-person is so not doable. And finding someone to replace her is turning into a real nightmare.

I have called her office back several times trying to get some referrals from her.  On February 10th I finally got faxed to me the letter she allegedly sent out to all her patients--except me of course--which is dated November 14, 2011.  In it she explained her move, provided a referral list to other doctors and gave a consent form to use to obtain her medical records.  Only the fax I got didn't include those two attachments. When I called back asking for these items, I was told by the staff that they were waiting for the doctor to give these things to them.

She also stated in her letter that she could continue following established patients via telephone and email from her new location.  Wanting to explore this option further, I called both this past Friday and Monday requesting a registration packet and a telephone appointment.  I've been put into voicemail both times that I have called and I am still waiting for a call back.

I also sent the doctor an email, but so far I have received no response.

Not What the Doctor Ordered

While I guess I could dismiss these incidents as just two more examples of how the medical system is broken, the reality is that these actions are both unethical and illegal according to the American Medical Association website.  Unbeknownst to me, they are examples of "patient abandonment."  And according to the Medical Board of California, patient abandonment is a good reason to file a complaint against a medical provider.

I've gone on to learn that, due to their unique and powerful role on our society, doctors are tasked with a special duty of beneficence.  That is a fancy way of saying that they must take actions that are in the best interests of their patients.  What this means in my situation is that my doctors were obligated to give me adequate time to transition to another health care provider and facilitate this transition by providing me with referrals and access to my medical records.

Clearly this is not what has happened.

Now that I know this medical-legal lingo and what it means, I am going to use it in my correspondence with my pain management doctor in an attempt to get her to respond to me in an appropriate fashion.  If that doesn't work, then I will seriously consider filing a complaint with the medical board.  Why?  Because her actions have truly caused a delay in my medical treatment and, at this point, she and her staff are creating unnecessary roadblocks to my ongoing medical care.

Why You Need to Act on This Too

I share this information with you, my readers, because I want you to be informed and consider doing things differently should your doctor ever dump you.  I want to be clear that this isn't about doctors being inconsiderate; it's about doctors breaking the covenant they have with their patients.

Obviously trying to work things out through good communication with your doctor and their staff is your first line of action.  But if that doesn't yield results that are in your best interest, it is time to consider other measures.  

A complaint to a medical licensing board is one of the few tools we patients have to keep our medical providers accountable.  It ensures doctors are fulfilling their ethical and legal obligations as physicians, a career they choose to practice.  It also provides important feedback to medical boards about the conduct of their licensees and identifies areas where continuing medical education is vitally needed.

Most of all, making a complaint empowers you as a patient.  It sends a message that you are not going to put up with bad behavior from your doctor.

So now that you know your doctor's obligations to you, what are your thoughts?  Have you gone through a bad break up with a doctor?  Armed with the information above, how would you handle this situation should it ever happen to you?  How do you feel about holding your doctor accountable?