What can we do to stop hospitals and medical practices from charging the highest possible rates to the uninsured or under insured?  It is unethical to penalize those who are most vulnerable and in need of a break.  Hospitals and practices are making money by charging these high rates and then sending the bills within three months to collections.  Once at collections, the harassment begins.  Sometimes, they are  asking for a large percentage of projected cost up front or else no care.

Maybe you haven’t experienced this because you have always had insurance.  Here is how it works.  Insurance companies negotiate with hospitals, medical practices and supply companies the amount they will reimburse for services.  The negotiated rate is generally anywhere between 30%-75% less.  Medicare rates are set by the government and can be 90% less for many services.

However, if for some reason, the patient doesn’t have insurance, is underinsured,or insurance is out of network, then the highest rate is billed.  For instance, insurance may reimburse for an MRI at $400.00 while an uninsured person will be charged probably around $1200.00.  What can consumers do?  The choice is often to not get the care because of cost.

Until the system changes, I would like three things to occur.  Insurance companies post the negotiated rates with all the hospitals, medical practices and medical supply companies.  Second, consumers have the right to negotiate rates for needed services.  And finally, rational payment schedules be available.  Being asked to pay thousands of dollars in three to six months is not reasonable.  Consumers need a break!

Rose died yesterday.  She was 89 years old and lived in a nursing home.  Rose was a very proper Irish lady, who always had her make up perfect and her hair (wig) just right.  She really didn’t want any visitors until her face was on in the morning.  She loved to talk and the nursing home staff loved her dearly.  Even the maintenance people made special trips to her room and kept everything working properly.

Throughout my career, I have dealt with death and dying.  I worked HIV/AIDS in 80′s and 90′s when there wasn’t a lot of treatment options.  My clients died, sometimes two or three a week.  I learned to acknowledge death and  to process the ongoing loss with the help of my meditation and spiritual practice.

But sometimes a person’s dying effects me in ways  I least expect it.  That was the case with Rose.   She had a very difficult time accepting she was dying.  She kept asking me, when she was going to get better.  At first, I would take the time to explain to her what was happening  but then over time, I stopped.  I would let her ramble about how no one told her she was sick and what a shock it was.  There wasn’t anything I could do except let her talk and be there.  I would smile and say, I understand.  She would relax and tell me she felt better just talking.

She had decided with her daughters that she didn’t want any further treatment.  No more hospitals or surgeries.  About a month before she died, she started to decline.  A few days without her makeup and she began to sleep.  The staff at the nursing home became very concerned.  I had to remind them, Rose had a terminal illness and she didn’t want any treatment.  I had never witnessed a staff so unnerved and sad at the decline of patient.  I was very touched by the love.

Rose used to tell me she had a second family in the nursing home.  One of my favorite memories is sitting with her two daughters in her room and laughing.  Rose loved her children dearly and worried about what would happen to them after her death.  But on this day, they told me stories, joked and we laughed together.  Every time I was leaving, she would say thank you and “Love You.”  I wasn’t used to hearing that from clients.

When I got the news of her passing, I was glad I had seen her the day before.  I had been able to say goodbye.  I am grateful I knew this Irish Rose.

I say, I am a dreamer, just like the John Lennon song.

I certainly dream of health insurance that actually covers people’s health needs.  Insurance that doesn’t deny needed services especially for the mentally and chronically ill.  I wish I didn’t have to explain to  parents why their child with a life threatening illness, can not go to a specialty doctor because the insurance won’t cover it.  Or why the much needed test is being denied because the insurance company has decided it isn’t needed.

I also wish the insurance companies would be honest and straightforward as to what the criteria for denials are.  I tell my clients there is no ryhme or reason. I once had an insurance physician reviewer tell me he was going to deny the surgery because he didn’t like the type of surgery.  I explained there was research that showed benefit for situations like my clients but he just didn’t like it.  Is that a good enough reason to deny it?

I also had a physician reviewer deny payment for an inpatient drug rehab because the medical director hadn’t called him back.  He wrote in the insurance note that he hadn’t called and therefore my client didn’t need treatment.

The response in the media from insurance companies is “we are containing and controlling the cost of healthcare”.  Yes, that is happening by increasing deductibles, copays, coinsurances, premiums, limiting consumer choices and denying claims and healthcare.  Why, I ask, does the industry have such a stranglehold on my healthcare?  Because they can.

Day 7: Doctors would test for strep for all sore throats.

How can you tell a viral sore throat from a strep throat?  You can’t except with a throat culture.  So why do so many primary care providers diagnosis sore throat as viral without a culture?

My simple wish is PCPs would do a culture with every sore throat and to educate parents to come in each time for a test.  It is important because strep doesn’t always present as a raging sore throat with fever.  That is the easy diagnosis.  It can be fleeting, only hanging around for a day or so.  No fever or maybe low grade or swollen glands.

Why do I think it is important?  Strep untreated can get into the nervous system and the heart by attacking the basal ganglia of the brain.  It can cause Tourette like symptoms, hyperactivity, psychiatric symptoms like OCD and heart valve damage.  It is called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections or PANDAS.  And it is often missed as a differential diagnosis when present.  It all starts because a simple culture was not done.

Insurance and evidence based medicine thinking are also at fault in this equation.  Insurance pressures the PCP to not over test and evidence based medicine doesn’t support cultures for every presenting sore throat.   Nor does it support the diagnosis in the differential of a child presenting with sudden onset of unexplainable psychiatric symptoms.

A rapid strep test and culture sent to the lab to verify,  if positive and treated with antibiotics can avoid the potential of healthcare nightmare.

DAY 6: Wishing for a better understanding of HIPAA

All my clients sign HIPAA (Authorization for Release of Information) forms at the onset.  It is supposed to be the key that unlocks the door to their medical information.  The road to obtaining the information is often blocked by barriers that make no sense and have no basis in the law.  I fear, even God, would have as much trouble navigating the inconsistent world of HIPAA as do the rest of us mere mortals.

I wish:

• HIPAA really existed for the patient.
• There was one form, not a myriad of individual institutional forms.
• Insurance companies wouldn’t take three to five days to scan the form.
• Nursing homes would stop saying they need to run it by their lawyers.
• And finally, I wish hospitals would stop denying a patient’s family real time views of the medical record while in-patient.

The idea of HIPAA was a good one in its original conceptualization.  Its purpose was to protect patient’s health information and control which individuals view the record.  Now, it is often an impediment to communication and care.  I am always amazed that even when I have a signed HIPAA form, I have to ask to speak to a supervisor to get clearance.

My friend, who does hospital ministry, says it is very difficult now because even he needs a signed HIPAA form to speak with anyone.  No one is sacrosanct in the fearful and paranoid world of HIPAA.  I guess anyone could put on a clergy’s collar or pretend to be a minister.  Proves my point, that God would have to sign a HIPAA form.  I just hope St Peter doesn’t ask for one at Heaven’s Door before he can let me in!

Day 5: I wish medicine would accept the mind/body connection

I wish that medicine would stop separating the mind and the body as if they exist in parallel universes.  I wish that medicine would acknowledge that  emotional and psychological issues   impact physical health and the healing process.  I wish medical professionals would do a more thorough history, in order to understand what underlying issues a person may be experiencing that are impacting their health.

This wish started after a conversation with an emergency room doctor’s comment about my client who was having chest pain.  I began to explain my client was under increased stress as a caregiver for a very  ill husband.  The doctor stopped me mid sentence and replied, stress has nothing to do with cardiac events.  My thought was “Hello Earth to Doctor, are you an Alien?”

I wondered if this same doctor  looked at Post Traumatic Stress Disorder (PTSD) in the same way that the body and mind have no link.  In this syndrome, a physical traumatic event, large or small, occurs and is followed months/years later by psychological symptoms like panic attacks, acute anxiety or depression.  The diagnosis is missed so often because the right questions are not asked and only the symptoms are treated.

I wish psychiatrists, psychologists and family doctors prescribed, along with medication, physical therapy or occupational therapy and/or exercise as part of treatment.   I always hear “got to fix the psychiatric symptoms and then look at the other aspects.”  I wish they would see the mind and body as one unit working in partnership.

As I was writing this blog, I found myself humming this classic song by Frank Sinatra:

“Love and Marriage….. Go together like a Horse and Carriage…You can’t have one, without the other.” As I see it, the mind and body, go together like the Horse and Carriage!

I dream of a day when no matter where I access healthcare, my complete medical record will securely be available on line.  Any time I see a specialist or  need to go to a hospital, my chart will be readily available.  I won’t have to worry that my MRI, CT or lab work from another hospital or state will be unavailable or if I end up at the emergency room, the medical team won’t know my medical history and medications.

In my dream, I have full access to all my records.  Not just do I control who can access the notes, I have real time information and alerts on who is reading the chart.  As a patient advocate, I dream of having faster access to medical information in order to be able to better assist a client with decision making.

Is it a possibility?  I realize this is going to take massive coordination for doctors and facilities to find software systems that talk to each other.  It is a complex task but one that has to be a goal for the future.  How much money and time is lost when medical information is not available.  Tests are repeated and mistakes are made.  Patients suffer.

A girl can dream.

I would like medical practices and institutions to become accountable for long appoinment wait times.   I want real communication on any delays and don’t want to hear one more time, “The doctor is behind.”  I want to know, how long is the wait in real time not doctor time.  I am tired of scheduling two to three hours for a fifteen minute appointment.

I want a workable solution.  I would like hospital based and private practices, urgent cares, ERs and radiological departments to prioritize communication wait times.  I want administrators to utilize technology and create systems and apps, so the consumer does not have to arrive on time and wait with no communication.

I suggest taking a look at the airlines and investigate how they alert consumers to flight time changes or cancelations.   Ask patients on intake, how they want to be contacted by phone, text, voicemail or email.  How about screens in the waiting rooms listing times, like the Motor Vehicle Department?  If nothing else have an office staff be assigned daily, to let people know what is happening.

And finally, it is reasonable for consumers to start billing practices for long wait times.  I have  colleagues who have sent bills for long wait times and been compensated.  There is nothing like a financial impact to get a problem looked at.

Medical professionals as partners in my health

I would like to see a change in the relationship between patient and doctor from transactional to transformational.  What I mean by this is, currently, doctors act more like managerial bureaucrats in a vast multi layered system.  We, as patients, access medical care disease focused and seek resolution to symptoms.

The amorphous being, the healthcare system, does not honor the role between doctor and patient.  Insurance companies, JCAHO and large institutions dictate the manner in which healthcare is practiced.  There is no money in helping a patient transform their lives to healing.  Annual exams are minimal attempts to ascertain a brief glimpse into the life of a patient and bureaucratic dictate.  Where is the profit for any part of the system, if people are well?

The bureaucracy likes to speak of health teams for patients.  My thought is, don’t leave the patient out of the equation.  So many teams, meet, make decisions and then bring their solutions to the patient.  This again is based in transactional thinking.  Until the patient has an equal seat at the table, and the focus shifts, doctors and health professionals will remain bureaucratic overseers of a complex system.

No Pre Existing Conditions.

No more being penalized for being human. This is what pre existing conditions means to me.  Humans get sick even when all preventive measures are taken.  How can we control our DNA? Why has an insurance company been given the power to decide what constitutes a pre existing condition?

Each insurance company has their own list of conditions.  Try to ask them  for the list.  You will be stonewalled.  Then request an explanation of why an illness has been given the status of a pre existing condition.  There will be no explanation.  I think the only answer is “because we can.”

When people call me and say they have been denied coverage because of seasonal allergies or pregnancy, I really don’t know how to respond.  All I can say is, there is no logic and don’t try to find it.  Pray the Affordable Care Act doesn’t get overturned in the courts.  In 2014, if the law stands, pre existing conditions will be a thing of the past.