Ovarian Cancer, Condescension and Intuition

Ovarian Cancer is one of those topics I’ve blogged about previously, because my mother-in-law was diagnosed with it six months ago.  Her diagnosis came after many months of complaints, mostly gastro-intestinal in nature.  Despite her ongoing complaints, she was never diagnosed until she was hospitalized.  At the age of 86, she underwent surgery (wrong, wrong wrong!  but tell that to my sister in law who made THAT decision) and today she is miserable, has little concept of reality, and is living in a nursing home.  It breaks our hearts when we visit.  We have no idea how long she will survive in this state of pseudo-living.

With that backdrop, you’ll understand why this morning’s news about a solid attempt at recognizing early symptoms for ovarian cancer makes me jump for joy.  I see my mother-in-law’s problems everywhere on the list of factors to watch for:  bloating, abdominal pain, difficulty eating, frequent need to urinate….  Yes, they are problems we have all had at one time or another (even boys do!) but when they continue, daily, for more than two weeks, cancer experts now tell us to get to the doctor, preferably an OB-GYN, for an examination.

The news was everywhere;  radio, TV and print. The New York Times covers this development better than most others, at least if you want more info than just the top level points. 

And here’s the quote from the NYT that makes your favorite Every Patient’s Advocate shudder, “In a survey of 1,700 women with ovarian cancer, Dr. Goff and other researchers found that 36 percent had initially been given a wrong diagnosis, with conditions like depression or irritable bowel syndrome.  Twelve percent were told there was nothing wrong with them, and it was all in their heads,” Dr. Goff said.”

I can’t begin to tell you how much that raises my ire!!  “There there, little lady.  There’s nothing really wrong with you.  It’s all in your head.”

As patients, we know when something isn’t right.  We KNOW when our bodies are signaling problems.  I believe the only reason patients are ever told something is “in their heads” is because the medical professional can’t do his job — he can’t diagnose – so he makes it the patient’s error and not his.  Condescension in the form of placing the blame on the patient is unforgivable.

We human beings are blessed with instinct and intuition.  We all have that little voice that tells us when something is right or wrong.  We know when our gut is signaling good or bad. 

Trusting that inner voice is the next step.  Those of us who know how to trust it have a distinct advantage.  It’s worth learning.  It’s worth practicing.  And when someone tells you something you KNOW can’t be true (because your inner voice has told you so) — then fight back.  If a doctor tells you something is all in your head, then see another doctor. If you aren’t satisfied with the answers, or non-answers, then continue searching.

That’s how I proved I didn’t have cancer.  That’s what kept me out of chemo. 

And that’s what will make sure women get diagnosed early and successfully treated for ovarian cancer. 

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Primary Care Physician as Care Maestro

When I blogged about your local drug store’s walk-in medical clinic, I promised some thoughts about a shift for primary care doctors and their role in healthcare.

To reiterate:  New options for patient care are evolving, and the primary care physician is being left by the wayside.  Beyond the walk-in drug store clinics mentioned above, newer “types” of healthcare titles have evolved — nurse practitioners and physician assistants, and these professions can legally and capably perform many of the functions of a PCP generalist.  In addition, some patients choose to see specialists on their own without referrals by a primary care physician. As a result of these and other reasons, PCPs are finding the sizes of their practices dwindling, or their time is spent doing more paperwork or phoning and less real patient care.   And because healthcare is about money (not health or care) — PCPs are leaving their practices, or choosing to specialize instead. 

Talk to med students and you’ll find very few who choose primary care as their field, often because they want to make more money than a generalist like a PCP makes.  With all the student loans and effort they put into their education, we certainly can’t fault them for their choices!

It seems to me, however, that PCPs have a major role to fill — and for the most part, it’s not being filled at all.  That role is of healthcare symphony leader, the maestro of our care.  In effect, the patient care coordinator.  Sort of an uber-advocate.

My own healthcare crisis is a good example of stories I hear all the time.  When I found a lump on my torso and went to my PCP (actually, his physician assistant) they immediately referred me to a surgeon.  The surgeon then referred me to the oncologist.  The second oncologist referred me to the National Institutes of Health.  When it was all over, and I had figured out I didn’t have cancer at all, my PCP called me and asked me to return to his office to tell him what had happened.

Who was my care maestro?  Me!  But I don’t know anything about medical anything!  I was just determined and angry and confused, and refused to believe that a cancer was going to kill me in six months!  There wasn’t anyone with any know-how helping me through the maze.  My care symphony was a cacophony of uncoordinated and highly dissonant notes. 

How different it might have been had I had access to someone who could have created harmony for my care.

Often, patients contact me with stories that have a similar vein.  They are frustrated because there is no one looking at the big picture.  There is no one who can help translate what a specialist has just told them.  There is no one who can take the test results they’ve gotten from a gastroenterologist to compare to the results they’ve been given by a cardiologist — or whatever other combination you want to throw in.  They are frustrated because they have no maestro — no one who is keeping their specialists playing on their same patient page.

Is this not the role of the generalist? The person who can look at the big picture, and coordinate the patient’s care?  The person who can be the gatekeeper, the liaison, the translator, the scheduler, the coordinator, the….

MAESTRO?

I realize this is the idea behind managed care.  Insurance companies will have us believe, and PCPs will buy-in, to the idea that this is what they are already doing.  And, again in my own experience, when it comes time for a check up, then yes, I think this is what happens.  As an over-50 patient, my PCP orders blood work, an EKG, a colonoscopy, a bone scan, a mammogram, and then she looks at the results and tells me to lose some weight. 

BUT — that’s not what I’m talking about.  I’m talking about what happens when a problem occurs.  When all is not well with test results.  When finding a diagnosis is a challenge.  When one doctor is telling a patient to get physical therapy and the next one is saying surgery is the only option.  When a man is told he has prostate cancer, but can’t choose between robotic or laproscopic and the only doctors providing advice are the ones who will make money from the procedures.

Who is the care maestro then?  No one — because there is no reimbursement for it.  The PCP makes no more money once the patient has been sent to the surgeon or the gastro or whoever the specialist is. 

There is a huge shortage of PCPs in this country.  We don’t have enough pediatricians or geriatricians or those doctors who generalize in order to help people.  They are like school teachers;  they realize they will be overutilized and under-rewarded, but choose their professions because that’s how they can establish relationships with their patients. 

Further, patients are getting more frustrated — and LESS healthy — because they can’t afford to establish those relationships — insurance won’t pay for it.  Is this not a detriment to patient safety?  Doesn’t this create sicker patients?

Doesn’t this all translate to MORE cost and LESS health?

It seems to me all these disparate aspects of care could come together to benefit us all?  What are your thoughts?

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Drug Store Medi-Clinics: How Convenient!

Last evening’s NBC Nightly News focused one story on the medical clinics being set up in drug stores/pharmacies, even supermarkets, across the country.  CVS, Target, Walgreens, Rite-Aid — they are all doing it.  Included, too, are medical sites being set up by Steve Case’s Revolution program (see previous blogs.)  Even AARP has written about them.

The idea is that we health care consumers want and need quick and convenient access to medical care for easier-to-diagnose and treat problems.  Instead of calling the doctor for an appointment, waiting at least hours and sometimes days, paying the high price of an office appointment (during business hours, of course!), then having to make another trip to the pharmacy for a prescription — instead we can drop in to the local drug store, sign-in, be seen and quickly tested, then pick up a prescription only feet away and be done with it. Onwards – home to rest, or back to work or school.

The professional staff is usually comprised of nurse practioners and physician assistants, sometimes MDs or ODs.  That means you (or your child) will be seen by a professional who can provide a basic level of medical service, but nothing more.  If the problem you have is anything more than basic, then you are referred back to your primary care physician (or perhaps a specialist?  I’m not clear on that.)  The nurse practioner interviewed in the NBC story also stated that all records of the visit are copied to the patient’s regular physician.  And, they accept most health insurance plans, so patients pay only their co-pay, as usual.

As your friendly patient-as-healthcare-consumer advocate — I (mostly) love it!  It’s helpful, consumer-friendly, inexpensive, convenient and effective. 

But primary care physicians aren’t happy with the concept, and yes, I can see a few pitfalls, too.

Pitfalls from my point-of-view are these:  symptoms are such squirrely things — with no patient history to review, a walk-in-quick-clinic nurse practioner might not realize that someone’s hacking cough may be something more than a bad cold.  Further, one thing I emphasize frequently is the establishment of a trusting and partnering relationship with one’s doctor.  It’s those occasional colds, flu and other visits that help us establish those relationships.  There’s less of a chance they will develop when patients go elsewhere for the easy stuff.

Doctors don’t like it because it takes money out of their pockets.  (yes — all together now!  health care is not about health or care — it’s about sickness and money — remember?) They cite the fact that they have expensive offices and staffs to maintain, and that much of the work they do gets done with no way to make money from it (paperwork, phone calls, etc.)  They say such clinics will be the downfall of what we know as the primary care model.

My response to that is two-fold.  First — patients will always seek the quick fix.  PCPs need to see the handwriting on the patient-care wall and realize that this kind of convenient service doesn’t ask them to close their doors;  instead it asks them to change their business model.  Why can’t they create quick clinics themselves?  Or work in one of the drug-stores? 

Or — even better — begin working with patients and insurance companies to shift the way they do their work.  I’ve identified what I believe to be a huge hole in patient care — and I’ll blog about that tomorrow.

But for now — my advice to patients?  Get the care you need in the way that makes most sense, short and long term.  If your sore throat or stomach upset or whatever symptoms you have could be the result of something more difficult that a basic bug or infection, then get yourself to a doctor who will be able to see it through with you.  A quick fix just won’t be the answer.

But when you or your child needs basic care for those simple-to-fix symptoms – go for it!  Much better that you get that care, and get on with life, than to forego care — or languish in a doctor’s office somewhere. 

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Moms Fight Incurable Diseases

With Mother’s Day only a few days away, it seems a good time to tell you about an organization called Fightermom.

Begun by a group of mothers fighting a disease called Spinal Muscular Atrophy, it has now expanded to include any adults who love children who were born with an incurable disease.  The website, found at:  www.fightsma.org/fightermom provides forums and blogs for moms to share information and find support.  It is intended to provide assistance to those who want to take a step beyond the caretaking of their sick children, to a place that also supports eradication of those diseases.

If you are the mom or other loved one of a child with an incurable disease, take a look at Fightermom.

Regardless of the health of your children – I hope you have a wonderful Mother’s Day.

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Got Fibroids? Avoid the Big H!

If you are a woman with fibroid tumors, pay attention!  There may be an option your GYN isn’t telling you about — and it may save you from surgery….

…. this according to Dr. Frank Vogel, the interventional radiologist I interviewed yesterday for my radio show.

Fibroids are benign tumors of the uterus and many women get them.  According to Dr. Vogel, up to 80 percent of black, Hispanic and Asian women get them.  A quick check online tells me up to 50 percent of caucasian women get them.  They can be very tiny, almost invisible, or they can grow as large as grapefruits or larger.  Their development and growth is dependent on estrogen, so once a woman is past menopause, she will no longer be affected.  They can be asymptomatic (no symptoms at all) or they can cause severe pain or heavy bleeding.  For those women most severely affected, the only way to stop the symptoms is to remove or destroy the tumors.

Until recently, the only way to make sure fibroid tumors were completely removed or destroyed was to undergo hysterectomy — the removal of some or all of a woman’s female organs:  the uterus, ovaries, tubes, etc.  There are some other treatments that involve lasers or even drugs, but most often they are only short term, or symptom fixers.

So why did I have this conversation with an interventional radiologist?  Because he performs UFEs — Uterine Fibroid Embolizations.  It’s a procedure that involves a few hours (or at most overnight) in the hospital, very minimal pain, and a return to normal activities in a week or 10 days.  All the woman’s organs stay intact, but her fibroid tumors are destroyed.  UFEs have been safely performed for 10 years.

Contrast that with a hysterectomy which requires major surgery, meaning several days in the hospital, a great deal of pain, and up to six weeks or six months before she is back on her feet and 100 percent!  I know this first hand.  I had a total hysterectomy in 1993, and believe me — it was NOT a cake walk.

So why do I blog about this at all?  What does it have to do with patient advocacy? 

If you follow this blog, you know that one of my biggest concerns, and one of the things I hear from patients all the time, is that they didn’t know about a treatment option that might have been better than the way they were treated. 

Why?  Because, too often, doctors only recommend treatments they will control or profit from.  So, if the treatment isn’t something they can make money from?  Hmmm… 

Because it will be a gynecologist who will diagnose fibroid tumors, and because a gynecologist will be the surgeon for his/her patient, and because it is NOT a gynecologist but an interventional radiologist, who performs the UFE — too many women never even hear about this alternative!  Their doctors just fail to mention it.  Hmmm…… 

Now don’t get me wrong.  I am NOT recommending women with fibroid tumors use UFE instead of a hysterectomy.  There are pros and cons for all treatments and these are no different.  This is not a one-size-fits-all answer. We are all different, and our bodies react differently, and each woman must make a decision based on her own situation. In fact, looking back on my own hysterectomy experience, I wouldn’t change it.  For almost 14 years, I haven’t had to deal with that monthly cycle and it has been heaven! 

This post is intended solely to point out that it is up to us as sharp patients to always check into ALL our options.  Second opinions are very important, too!  The more professionals we talk to, the more options we’ll know about.  Research is important, too!  The more we delve into possibilities, especially online, the more we can converse intelligently with our doctors about all the treatment options that might apply to us.

So Ladies!  A word to the wise women out there who are faced with decision-making about their fibroid tumors.  Ask your gyn if a UFE makes sense for you.  And find an interventional radiologist in your area to discuss possibilities with.  You’ve got nothing to lose — except those fibroids!

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Alzheimer’s, A Conversation

This morning on my radio show, we aired my interview with Dr. Sharon Brangman, geriatrician and expert in Alzheimer’s Disease and other dementias.  As the daughter of a mother who is in the advanced stages of this horrible disease, I was moved to tears by the conversation.  It was an opportunity to learn more about it, and even ended with a bit of hope.  Here are some points from the conversation — a few basics, and some information that was new to me, too.

• The numbers of victims are increasing exponentially, mostly because people are living longer, and because of the growing numbers of baby boomers.
• Dr. Alzheimer was the person who distinguished “his” disease from other forms of dementia — about 65 years ago.  The former term was “hardening of the arteries.”
• How do we know the difference between forgetfulness and the onset of dementia?  If the non-remembering begins to get in the way of life, then it may be dementia, including Alzheimer’s.  When we can’t remember how to do something we’ve always done, or can’t remember names of people we see frequently, or forget to take our medications consistently, or anything that becomes an interference with everyday living.
• Caretakers need almost as much care as the actual Alzheimer’s patient.  (My opinion: perhaps the patients are patients, and the caretakers and families are the real “victims.”)
• Dr. Brangman’s metaphor for the physiology of how Alzheimer’s works:  think of the brain as a highway system of thought patterns.  A protein begins to build and gunks up the highway, putting roadblocks in front of the thought patterns so they can’t be used.
• There are a handful of dementias — Alzheimers is most prominent, but not all have the same physiology and some are treated differently.  It’s important for doctors to discern which dementia is causing problems so it can be treated most effectively.
• Research shows that people who continually use and challenge their brains may keep Alzheimer’s at bay — and taking the above metaphor another step — it’s because the brain develops more highways for the transport of ideas when it is being used and challenged.  With more highways available, the protein does not so easily block the passage of thoughts.
• Studies about the effect of music on Alzheimer’s patients have shown that familiar music elevates a patient’s mood and brain function.  Dr. Brangman hypothesized that it’s because music thoughts are stored in so many areas of the brain, that there are enough of those above-mentioned highways available to translate the thoughts.
• On the horizon:  research that will help develop therapies that will regrow nerve growth cells, and/or repair or dissolve the problems caused by that gummy, gunky protein that develops in the brain.

How do we keep Alzheimer’s at bay in our younger years?  Eat right, exercise, don’t smoke…  all those good practices that seem to be the answer for keeping any health-related problem out of our lives.

End of post for today.  I’m going to go eat a salad and walk a few miles.  Then I’m going to call Mom to tell her I love her. 

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Alternative Primary Care: Retainer, Concierge, Boutique and Spa

There’s a movement underway among primary care physicians to shift their sources of income, and it could have a profound effect on how we patients view our relationships with our doctors, not to mention our outcomes when it comes to medical problems.

If you remember the Marcus Welby days, or if you’re old enough to remember when the doctor made house calls (raise your hand!  yes!  there are a few of you out there!) then you’ll appreciate this movement toward taking back their own practices.  As a business owner myself, I can’t say as I blame them. 

Who do these doctors expect is going to pay them?  Patients!  Go figure.

Wait! (you might say)  Patients pay them now!  So what’s different?

In fact, most patients don’t pay their doctors directly.  Instead, patients pay for insurance or medicare, and the doctors bill, then get paid, by the insurance companies or medicare.  We patients might pay a co-pay, or a smaller percentage of the total bill, but rarely the whole thing.

Also consider this:  When doctors send those bills to our insurance companies or medicare, they don’t get paid what they charge.  Instead, they get paid what the insurance company wants to pay them.  (Picture it this way:  when your car needs repair, and the bill comes to $500, you tell the mechanic that yes, you understand the bill is $500, but you will pay him only $350 — take it or leave it.)  Plus, doctors employ services or extra staff, just to take care of billing all those third-party payors.  Meaning, it costs them extra for the insult.

A number of terms have popped up to describe direct-from-patient-to-the-doctor pay models.  “Retainer” or “concierge” medicine, “boutique practices”, “medical spas” — the idea is that a patient pays a set amount in a year, and that gives the patient total 24/7 access to his doctor, often in ways there is limited access now.  For example, retainer doctors may provide email access, may accompany a patient to a specialist, and may even make house calls.  Everything “old” is new again!

Practices such as family medicine, internists, OB-GYNs, pediatricians and geriatricians are moving to this model.  Others may follow suit.  And my guess is, if you see a naturopath, then direct-pay-for-service is what you’re used to anyway, although the retainer idea might be new.

I have mixed feelings, but as you know, I’m always a champion of pro-patient programs, and this does seem to be one.  In fact, it’s a boon to everyone involved, including the doctors.  The only players on the short end of the retainer stick are the health insurance companies, and — well — frankly, who cares?

There are still considerations for patients that don’t get addressed in this model.  It can be expensive. I’ve heard amounts ranging from $1,500 to $10,000 annually.  And remember, that’s just for primary care.  While I’m a firm believer in the idea of primary care doctor as the maestro of the medical care symphony, there are so many problems that must be addressed by other doctors, or in alternate facilities, that will not be paid for in that retainer — so — the patient will have to pay for those services separately.  Or, the patient will pay the retainer IN ADDITION TO insurance premiums and co-pays for specialists and other services.

Further, I wonder what percentage of patients can actually afford this boutique-type primary care service?  Now, I’m not the person who will tell you that since ALL people can’t afford it, then NONE should have access to it — no way.  BUT, it’s a consideration because it does further separate the haves from have-nots.  It makes me uncomfortable, at least.

There are a number of resources for patients who want to learn more about retainer services and which doctors are now using this system.  Here’s a list of articles that may interest you:

Maryland Business Gazette:  On Call – for a Fee and No More Assembly Line Medicine

Seattle Times:  Concierge Medicine, An Affordable Option

Connecticut Post:  Put Your Doctor on Retainer

What I have not been able to find is a list of doctors who have shifted their practices to this model.  I can’t find local lists or state or national lists. If you know of any — will you let me know?

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