HealthcareWhisperer
HealthCare Whisperer

Health Navigation Tip#4: The Hospital

A hospital admission whether an emergency or planned is stressful.  It is easy to feel overwhelmed by the institution's rules and regulations.  A consumer does not loose their rights upon entering a hospital.  It is just a more daunting task to get what you need.  Remember, hospitals work like a clock, regulated and timed.   Here are some tips to help you.

                             You or a family member should:
  Know what surgery, procedure or test you are having and why.
  What are the potential outcomes, side effects and adverse reactions.
  How long will the stay be?
  Bring a list of medications (It is always good to keep a list in a wallet in case of emergency)
  Bring a list of your medical history.
   If  having a surgery,  mark the area in big letters, for instance "Right toe"
  Have a signed HIPPA form with a list of authorized people who can speak with staff in your chart. 
  If there is an unexpected decline or infection, ask for a rapid response team to make an assessment,
     or contact the doctor in charge of the floor, and if needed the medical director.
  If You feel you are not being listened to, contact the Patient Relations department immediately. 
  You can get a copy of your records before leaving.
  Many hospitals allow a family member or friend to stay overnight in the room.  
  Ask for an explanation of any new medications being given.  
  If possible have a signed Living Will and medical power of attorney in your chart.
  You can ask for an itemized bill.  Even with insurance, there may be coinsurance payment.  Hospitals do make mistakes
    with bills.
  If Discharge planing is needed, start the process as early as possible.  Make sure you are involved with the discharge           planner or care manager.  The plan should not be a surprise to you or your family.
  Make sure you have  prescriptions to take home and get filled.
  ASK ALL THE QUESTIONS YOU WANT UNTIL YOU HAVE CLARITY!

The best way to accomplish your goals is to communicate with the staff from the first day.  Make sure the staff knows who the point person is and the information you will be wanting on a regular basis.  I always advise use the chain of command to get desired results.  If you or your family feel stuck or feel unheard, get an advocate.   
  
  
    

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My Constitutional Amendment: NO PRE EXISTING CONDITIONS

 I read an article in the Boston Globe by David A. Lieb, reporting that in several states there is a movement to place on the November ballot, a constitutional amendment  to create a "state based right for people to pay medical bills from their own pocketbooks and would prohibit penalties against those who refuse to carry health insurance."  I asked myself, " Do I live in a parallel universe or on a different planet?" Would this amendment mean my clients who are left with thousands of dollars of medical bills have the right to pay them and perhaps file for bankruptcy?   Does this also mean the person who is denied insurance because of pre existing conditions and has a recurrence of a cancer now has the constitutional right to pay their bills?  Is this bill being supported by the insurance lobby?

The article stated the  American Legislative Exchange Council (ALEC) was driving this movement.  I read the information on their website and found it well presented yet inaccurate in places.  One of the premises for an amendment is to stop any single payer system.  Their premise reads:

                                            Protecting the Doctor-Patient Relationship
"ALEC's Freedom of Choice in Health Care Act ensures a person's right to pay directly for medical care.  Single-payer systems, like in Canada, make it illegal for citizens to go outside the government's health care plan and contract for their own medical services.  Cost overruns require most single-payer plans to restrict patient choices, and instead mandate an "evidence-based" treatment schedule that standardizes care."  (taken from ALEC website)

I am not going to discuss the single payer system but the premise that evidence based medicine already controls our health care.
This process already exists and it is called the insurance companies. One of the reasons I left private practice was because it was being controlled by the myth of evidence based medicine.  Our care already is dictated by what the insurance companies deem medically necessary based on cost and evidence based medicine.  It is an illusion to think that most doctors haven't bought into this.  It is the standard in medical care now.  Evidence based medicine translates into : thinking outside the box means no reimbursement and patient pays.  There is always a third person in the room with the doctor and patient , the insurance company.  How many people can afford a treatment not covered by health insurance?  Very few and many die because the treatment is unreachable financially.

ALEC also wants states to allow citizens to buy healthcare across state lines.  Great idea and  would agree if ALEC could guarantee it was not considered out of network.  Yes let's have more  insurance options with lower premiums.  The problem is all the options allow insurance companies to exclude for pre existing conditions and drop people if costs are too high.  Why can't ALEC get on board with no pre existing conditions?  Perhaps there would be less uninsured if insurance companies couldn't deny people coverage because they had been sick.

I would like ALEC to do the research or talk to  people like myself who daily are trying to secure health insurance or negotiate medical bills or get an insurance company to pay for a much needed procedure that every doctor agrees is necessary.    What relief will an  amendment give to any American to relieve increasing premiums or being denied for pre existing conditions or have thousands of dollars of medical bills?  I want an amendment that reads NO PRE EXISTING CONDITIONS and NO DROPPING PEOPLE FOR BEING SICK!

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Healthcare Navigation Tip#3: The Doctor's Visit

                                                            The Doctor Visit
Have a list of prioritized questions.  Many doctor’s visits are time limited and rushed, so it is important to know what are the most important questions to get answered.  If you have researched a topic, bring the information with you.  Some doctor’s like informed patients and appreciate the information but not all.  If your visit is about a new diagnosis, medication, new symptoms or concerns, bring someone with you.  This person can take notes, read your question list and be a general support.  Many people forget what was told to them during the visit.  Do not hesitate to call the doctor’s office after the visit, if you have further questions or are not clear on what was discussed.  Ask to speak with the doctor’s nurse or medical assistant.  If your doctor is set up with email, send one asking for clarification.

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Healthcare Navigation Tip#2: Insurance

                                               Tip #2   Talking to an Insurance Company

First take a deep breath and exhale!  Have all your information in front of you including your policy number and if applicable the insurance explanation of benefits. If you are investigating a claim, it helps to know what your policy covers.  Insurance companies do make mistakes will make adjustments.  If you have been denied coverage, ask exactly why it has been denied.  Sometimes, it needs to go back to the doctor to recode or other times the insurance company will resubmit it.   Be prepared to be on hold.  Wait times can be as long as thirty minutes especially on Mondays.  Take the name of the person you are speaking with and write down the conversation.  If you feel you are not getting anywhere with the customer representative, ask to speak with a supervisor.  If you are not satisfied with the information, call back.  You may get new and helpful information. 

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Tips to Navigating the Healthcare System

The healthcare system can be web of confusion.  It is easy to feel overwhelmed by the prospect of making a call to your insurance company, or to find a doctor, or understanding a new diagnosis. Accessing the information you need from the healthcare system can be a daunting, stressful and exhausting task.  As a healthcare advocate, I navigate the system everyday for my clients and know the barriers and frustrations involved.  Over the years, I have developed techniques to get successful results.  I would like to share a tip each day to assist you with better results while dealing with the healthcare system.
 
                           
                                                      Tip #1 The Insurance Policy
Know what your insurance policy covers.  If you have a hard copy, take the time to read the details. If there is no hard copy, most insurance companies have all details of plans available on their website.  By reading the plan, you will know co- pay amounts, what needs prior approval, how much is the deductible and what is considered out of network.  This information can make a difference in knowing your cost for different procedures, hospitalizations and doctor’s visits.  It will also give details as to the appeals process.

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Don't let the "HIPPA"potamus crush you

I have to remind myself that the Health Information Protection and Privacy Act or HIPPA was enacted to protect the consumer.  It was designed to protect the consumers medical records and allow accessibility to the records.  In other words, the medical records freedom of information act for consumers.  What it has become is a tool to hamper getting your records in a timely fashion in the guise of protecting your rights (law states it should take no longer than 30 days).  Institutions have succeeded in making it cumbersome, unfriendly and slow to receive the requested records.   The law states you need to fill out a form and that should be the end of it.  But it never ends there.  Some forms need notarizing while others can only be the institutions form.  The bottom line is that HIPPA has now become a barrier to getting medical records.   One of the problems is the law allows states to add onto the law in terms when the records have to be released and punishment for breaking HIPPA guidelines.   Some states also have bent to strict guidelines on what can be withheld from consumers.  For instance, in New York doctors comments can be held back.  

It seems every day I get a call that involves obtaining medical records.  I had a family who needed to transfer  the father to another hospital for life saving treatment.  The medical records were vital to coordinated care.  The hospital in question was resisting constantly citing HIPPA as a reason for refusing.   It was certainly beyond understanding why the records couldn't be obtained.  A little known secret is all medical doctors, centers, hospitals,  and business need to have a compliance office and point person. There also needs to be a state HIPPA office to deal with complaints.   Always give the medical compliance office  a call the minute records are refused or taking too long and insist on getting the records immediately.   If that doesn't work, call the state offices.  Nobody likes a call from the state especially about HIPPA.   The message here is DON'T GIVE UP!  Remember the records are rightfully yours to have within a timely fashion.  



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What happened to Lillian Wald's dream for the VNS?

Lillian Wald was the founder of the Visiting Nurse Service of New York.  She started the service to provide care no matter what the circumstances to the poor, destitute and needy in the lower East Side of New York City.  There are pictures of her walking or jumping across tenement roof tops to get to those in need.  She created this service because no one else would do it and people were suffering.  I started my nursing career as a visiting nurse.  It began because I had a clinical rotation in nursing school with the Visiting Nurse Service.  I was so inspired by this experience, I knew I had to work in this field of public health, helping those who needed it the most.  There were visits assigned to me where  I had to walk up several flights of old rotting stairs, watch for rats and take an escort to protect me from drug activity and mugging.  One time, I was making a visit to a Manhattan project building and ran into several local policeman in the hall.  They asked me why I was there because there was police activity in the building.  I explained and from that day  they always looked out for me.  It made me feel safe.

                                                   Fast forward to 2010.

My mother-in-law fell at my sister-in-law's house on Christmas Eve day.  After the second fall in 12 hours,some disorientation,  my sister-in-law took her to the ER.  The doctors wanted to admit her over night because her heart rate was abnormal.  Being of strong Russian stock and believing people only went to hospitals to die, she refused repeatedly over five hours.  Her PCP(gerontologist) talked to her for  30 minutes on the phone but she was firm, NO HOSPITAL.  She did agree to follow up with her PCP at the request of her children.  Her PCP ordered the VNS to visit her at her home in Brooklyn, NY to make sure she was stable and safe until she could get an appointment.  

The VNS refused to visit her because they deemed her unsafe.  They made that assessment not in person but over the phone.  They informed my sister-in-law because she lived alone and had fallen they weren't going to visit.  Let me get this straight:  the purpose of VNS now is to take care of people who live with other people, have no real medical issues and make assessments from the office?  Is this the dream of Lillian Wald?  I called VNS and asked them why my mother-in-law had been refused a visit.  I was given the same information with the addition of the doctor hadn't cleared her, and there was a policy stating for liability issues a nurse couldn't visit.  I said but the doctor ordered it.  Well, the nurse determined the doctor thought it was unsafe.  I asked Did the nurse speak with the doctor?  No answer.  I knew the doctor had not been contacted.  The conversation was ended with VNS agreeing to visit after she saw the doctor in two days.

What a sad commentary on our healthcare system.  Of all the organizations, I never thought VNS would close its doors to the most needy, sick and neglected for liability issues?  An even greater questions is, How can a medical professional make an assessment of safety without actually seeing the situation? Poor Lillian Wald.  Her dream is now watered down to help only those who may not be too much trouble or inconvenience.

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Chronic Pain Client Part TWO

I recently wrote a blog about a chronic pain client of mine who couldn't get the treatment needed.  Last I wrote, an appointment at Stanford Pain Center was scheduled, five days before running out of medication.  As I wrote, I was hopeful, this would be the end of the saga.  I didn't hear from my client after the appointment, so I thought all was well.  I called the next day, just to follow up.  What I surprise I got when my client started talking.

Stanford has a policy that no medications are prescribed on the first visit.  It is written on the new patient pages.  I was not told that by intake coordinator.  My client said the doctor was very nice and agreed he needed the medication at the prescribed dose.  He verified the letter that Beth Israel Hospital in NY was well known as a reputable pain center.  He explained to my client in cases like his, where medication is stable and necessary, Stanford likes  to support the PCP in writing the prescription.  He stated the research validates it is better for the client.  He gave my client a form to give to the PCP and said he would fax a letter  explaining the validity of the dose.  It all sounds logical and medical but my client was still left without a prescription.

My client went to the PCP's office, a community health center.  The nurse  informed my client the PCP had written a prescription for two days only (this was before any information from Stanford) and he was gone for the holiday long weekend.  My client spoke to a supervisor who said there was nothing to be done.  AND BYE BYE.  As you can imagine, my client called me in a panic.  What was to happen?  Would withdrawal occur?  Would increased pain and suffering occur after more than five years on pain medication?  By the time I received the call it was late in the day.  I made some calls and only got voice mails or  asked to leave a message.  

The next morning, I knew  something had to happen.  It was the Wednesday before New Years Eve and medical facilities close down.  I decide it was time to climb up the administrative ladder.  I was able to find the medical director's email, phone and fax numbers.  I proceeded to write the story, asked him to intercede and emailed it.  To my delighted surprise within twenty minutes, I had a response.  He was going to look in to it.  I faxed him a release to speak with me and waited.  Three hours and I decided to try and reach the  pain doctor as a back up.  I spoke with the Stanford front desk and left a message even though I was told most everyone was gone.  Again, to my surprise and delight, the doctor called me.  I thought, Happy New Year, 2010 is going to be amazing.  I had a great conversation and asked him to call the medical director.  He said he would.  He called me back in about fifteen minutes to say the medical director had already decided to write the prescription.  I was elated and very thankful and so told the doctor.   We even spent a few minutes talking about the role of an advocate.  I called my client and was told the medical director had just called to come pick up the prescription.

And so I wish, this was the end of the story.  Today, I received an email from my client stating the insurance was not paying for the medication until a new medical necessity form was received and reviewed.  This could take up to seven days.  My client will have to pay for a few days.  Luckily, California has a rush review that has to occur within three days.  But still the earliest, the medicine will be available is three days past the original end date.  My client, having a terminal illness and chronic pain is loosing hope.  It was a very depressed email I received and have been doing my best to uplift the spirit.

What can I say about a system that reminds me of a Kafka novel or the life of Job?  Is this story an extreme example of our current system?  Unfortunately, it highlights, the absurdity of many policies and prejudices of our system and the harm done to many who in good faith follow what is asked of them, only to end up in the same place, bankrupt and still suffering.






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A Time for Compassion and Joy

Today I am reminded of how much I am grateful for.  As an advocate, I am grateful to all my clients who inspire me with their determination, courage and hope.  I am grateful for being able to assist clients in overcoming barriers to healthcare.  I am energized each day I am able to provide guidance.  I love finding solutions when none seem possible.  I am humbled by the sacrifice of the caregivers of many of my clients.  I don't know if I could pass the test.   Thank you for another year of allowing me to providing advocacy services.  I wish everyone hope and peace in this coming year.  

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My Client Needed Chronic Pain Medication and No One Would Help.

I find doctors have a fear of prescribing pain medications.  A client of mine, who is HIV positive, moved to California near San Francisco from New york City, three months ago.  There is also a diagnosis of CMS myelopathy causing chronic pain.  Pain medications were prescribed by the HIV doctor and / or specialist  for several years.  My client came prepared to California with adequate documentation from the doctors about the diagnosis and medication dosage.  The client contacted me after two months of being told neither the primary care nor HIV doctor would provide prescriptions.  The doctors mantras were  1. you need to see a pain specialist  2. I am not trained to write for pain medication or 3. I only treat  within my specialty. 

 It would be a simple task if there was a pain specialist who would take the insurance which is MEDI-CAL.  The PCP office referral person told me sometimes no specialists can be found.  As my client said, should I just give up and die?  I personally called 35 pain specialists in a 50 mile radius of my client and 32 did not take the insurance.  The other three only did injections and no pain medication management.  I spoke with pain centers at two major universities, three public hospitals(no new clients or no more MEDI-CAL) and the story was the same. The office of MEDI-CAL was unable to help locate a specialists either.  Four weeks later after writing letters, faxing medical notes, calling every day and getting my client to switch to a different part of MEDI-CAL  was my client accepted by a university center.  However, the appointment has not yet occurred so there is no guarantee of a prescription.  There is reserved hope.

I  do not accept that doctors can not write for pain medication especially while a client is looking for a specialist and there is proper documentation.  Doctors can even call other doctors and speak directly for verification.  My client came from a reputable pain center in NYC.  Doctors can consult directly with a local pain specialist for guidance.  Not one of the doctors would write the prescription at the dose required and two would not write at all.  My client is taking one third the original dose. The emergency rooms also refused and referred the client back to the PCP.  Why is it that doctors think people on chronic pain medication are drug seekers and need to go into rehab?  The literature speaks to the validity of the use of pain medication.  Let's not forget, my client is HIV positive, has AIDS, chronic pain and has been on pain medication for over five years.

I was appalled when  an HIV doctor told my client, I only treat HIV.  My client's pain is HIV related and there is no difference.  I know because I worked in HIV care as a nurse and nurse practitioner from 1983-86, 1991- 2002.  I started an HIV/AIDS center in Santa Fe, New Mexico.  I learned to work with pain medication because it was part of the job.  I knew the pain of many of the HIV related disease/ opportunistic infections and I would not let anyone suffer.  I also made sure I had all the information and called whoever I needed to for verification of dosage.

So many doctors are fearful of drug seekers and being lied to.  Yes, it happens to us all in practice but the drug seekers don't come in with the kind of documentation my client has.  Nor do they request you call their recent pain specialist/HIV doctor or PCP.  I do not understand how a doctor can allow a client to suffer when there is a chronic disease involved.   I do realize the DEA is suspicious of and monitor narcotic prescriptions.  The doctors who are prosecuted are the ones  causing harm, writing too many prescriptions and don't have valid documentation.  I don't think the DEA would prosecute a doctor who wrote a prescription for an AIDS patient who had a documented history of pain management of the specific drug dosage, and was waiting for a pain specialist to accept the referral.  Is this the Michael Jackson syndrome, a fear of writing pain medication?

It certainly is a sad commentary on the state of medicine in this country.  It seems fear is the driving force not sound medical care. Fear of being sued, fear of being accused of writing for too many pain medications, fear of being labeled as an easy doctor to get pain medications from are  some of the underlying themes.   What will happen if my client can not get the pain medication?  Let's hope in this spirit of joy and celebration, that won't happen.

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