HealthCare Whisperer

Nursing Home: Hospital Discharge Planning:Financial

2010-06-28T13:05:28Z

The cost of a nursing home or assisted living can be daunting. If your loved one is in subacute rehab, medicare is paying for 100 days. After that, you are responsible for payment. During the time in rehab, physical and occupational therapy will be given. It will be a window to assess what the next step will be. During this time, figuring out assets is critical.

If you have been involved with long term financial planning, you are ahead of the game. The cost of nursing homes run from $5,000-8,000 a month. Assisted living vary depending upon the services but also in the thousands monthly. Most cost comes out of pocket and assets will have to be spent down. The best advise I can give is contact an elder care attorney. Be sure the attorney is actually certified as in elder care. There are not a high per cent of attorneys who have taken and past the certification. An elder care attorney will know state and federal laws related to taxes and estates.

It is also helpful to have an accountant who can help organize accounts. This person can be a neutral eye for all matters financial.

You can also contact the Small Business Association or Better Business Bureau. There are often retired lawyers who can help if the cost of a lawyer is too much. It is important to get advise.

Check if there is long term care insurance. Depending upon the policy, much of the cost will be covered for the time listed. However, it takes time to get this activated up to three months. Once you know the possible outcome, contact the insurer.

It will be important to get a clear picture of where the assets are located. My husband used to joke that his Russian mother still hid things under the mattress as any good Russian should. When the time came, we did look under the bed and luckily nothing was there. Instead, her assets were spread out in multiple accounts and bank deposit boxes. My sister-in-law spent several long days at the bank filling out paperwork and getting access.

The spend down of assets will most likely have to happen before medicaid will kick in. This means you will be paying out of pocket all your loved ones resources before you get state assistance.

What I hear frequently from clients and friends is, "I tried to talk to my parents, loved one and couldn't get anywhere". The majority of families find themselves in this situation.

The Limits of Thinking Like a Doctor

2010-06-22T17:19:00Z

There is nothing that gets my advocacy juices flowing than hearing a doctor tell a patient, I don't know what the problem is, we've done the tests and there is nothing else I can do for you. For some people, it is a devastating moment when no answers are available and the symptoms are worsening or debilitating. I have many clients who tell me this story. Here is one example.

My client is a 44 years old male, who has an undiagnosed neurological disorder that has him in a wheelchair. It started as dizziness 2.5 years ago, a common complaint but progressed to a debilitating illness. He can't work, play with his son, walk or see well. The early neurologist did standard tests and after a time said you have a neurological disorder of unknown origin. He finally saw a neurologist in a major city who proceeded to suggestion possible diagnosis , did a work up, tried some treatments and then hit the wall. There was still no diagnosis but a fine tuning of what was known and some medication to control symptoms. He said to my client, there was nothing else to do.

What had actually happened was the doctor had reached his limit of available resources of diagnostic tests and treatments. There is a syndrome I am finding in medicine that doctors and nurse practitioners are lacking in creative "out side the box "thinking. Standard of care and evidence based politically correct thinking demand only linear thinking in order to adhere to the guidelines. Evidence, in philosophical terms, is all findings that support the way we think and behave. If the client presents any other evidence or options it is merely their opinion. Any creative thinking is therefore deemed out side the box or not valid. In other words, doctors have trouble thinking outside the box because the medical profession is the box.

Out side the box thinking does not mean trying some crazy radical alternative therapy. It can be as simple as seeking out the leading national researcher or specialist and either consulting or getting an appointment. Dare I put forth that egos come into play when this option is ignored? Is it difficult for a doctor or nurse practitioner to admit they are not going to be the problem solver? Is it easier to say to client there is nothing else for you and live with it or would it be possible to really put your clients options first? I do know sometimes there is nothing else but lets try!

My role as an advocate is to leave no stone unturned. Find solutions, if possible, when medical professionals close the door and say I will see you three to six months. I wish this client was an anomaly but it is not the case. It is the norm. Our expectations with the medical profession needs to be readjusted. We have to know to look out for our best interests and not expect a medical professional to be as participatory as in the past. It is the new medical culture and both sides must adjust. Doctors and nurse practitioners need to accept the new and changing role of the patient to the empowered patient. Patients need to be informed and willing to think outside the box when necessary. Patients should not feel guilty for not agreeing with the doctor or seeking other options. There needs to be collaboration.

My client is going to a specialty center where the leading doctor in his field nationally practices, where the state of the art diagnostic radiological and lab tests are available. As an advocate, I was able use my resources and get him an appointment. His doctors were lukewarm in helping to get the necessary information to the center. It took my client's wife sobbing in the doctors office and expressing frustration at the lack of response to get what was required pre visit. There are always lots of excuses but three weeks post request, does it have to be this way?

Patient Advocacy was started because of these situations. The medical profession still roles their eyes at the thought. There is often an icy breeze when I say I am a nurse practitioner and a patient advocate. The most common response is why does this person need an advocate? I rest my case.

Nursing Home: Hospital Discharge Planning Part 2

2010-06-21T18:32:00Z

One day a case manager comes into the room and asks to speak with you. She/he is wondering if you think your relation can go home or needs placement. You stop and think, can it work at home? You have probably already heard from your relation that they want to go home. Matter of fact, you are starting to feel like the bad person at even thinking of placement post hospitalization or rehab. Here is what you need to think about.

Is the home safe?

MOBILITY

Is the person able to ambulate without assistance. If there is a wheelchair/walker,cane involved.

Is the house design easy to navigate and could a walker get used inside? Meaning are the hallways big enough.

How many floors? Could all activities be done on first floor (if house)?

Are there rugs/ throw rugs?(all throw rugs need to be removed)

Are there grab bars in the bathroom, bathtub?

If there are stairs, are the railing secure?

Mental Status

Is the person alert and oriented? This means they are cognizant of day, time, year, and their environment.

Are they forgetful? Is there a risk of a burner being left on?

Are they able to communicate their needs by phone, email?

How is the memory?

ACTIVITIES of DAILY LIVING

Is the person OK to prepare food or is there someone who comes in and does it or meals on wheels?

Is assistance needed for bathing and dressing?

Who does shopping?

Who cleans? Removes trash?

Can medication be taken independently or needs assistance/ reminders?

How will medical appointments be gotten to.

SUPPORT

What support systems are in place, family?, friends? organizations

Is Isolation a factor? Is there socialization?

It may fall on your shoulders to make the decision. It may be made for you by the nature of the medical event. It is possible to keep someone in the home but it can take home hour care with medical assistants and nurses some for 7 days,/24 hrs. Medicare does not pay for these services. In many states there are long term and elderly services, which provide some assistance. Staying in the home can be optimal, if resources are available and safety issues are addressed. Aides cost from $15-25 an hour. A nurse will cost twice that. It is a hard decision but look at all the criteria and make the decision.

Nursing Home: Hospital Discharge Planning Part 1

2010-06-16T16:12:27Z

I realized there is something I forgot to mention in my last blogs. It is important to write down any information you receive and who gives it to you. Make sure to get doctor's, nurses, administrators, ancillary support persons and insurance representatives names. You can get a small notebook and write all the information in it. When you can refer to a specific conversation and give the person's name, it will make a difference in getting needed action. What you will discover is there can be conflicting information when the same question is asked. So always have a pen and paper.

DISCHARGE PLANNING

Discharge planning starts from the moment of admission. Hospital and insurance companies dictate that there is a specific course of treatment and discharge not be prolonged. Until a clear picture of the medical diagnosis and treatment are available, it can seem as if the world is spinning out of control. Tests are ordered, doctors are visiting, medications are being given and it is hard to keep pace.

Unfortunately what happens is as soon as some resolution of diagnosis and treatment is clarified, discharge could be any time. I have experienced people being told discharge is going to happen the next day because the insurance won't pay since the diagnosis and treatment are clear. It may mean being transfered to a subacute rehabilitation facility. As hard as it sounds, start thinking about a discharge plan, when the flurry of the initial activity and shock begins to subside. Discharge planning translates into what will happen after the hospital stay.

Here are some tips to getting what you need.

Immediately find out who does the discharge planning. Is it a nurse, social worker, discharge planner or case manager.
Make the discharge planner your best friend. Let them know you want to be involved in every discussion and would like daily updates.
A patient cannot be discharged without a credible plan in place. This means, if a subacute rehab, nursing home or assisted living placement is required, it must be done before discharge. It also means a patient cannot be sent home to an unsafe situation. A plan must be created before the discharge for a safe home environment. It all sounds logic and reasonable but I have seen people discharged with no real plan in place.
If placement in another facility is needed, and you have no idea of what is available,ask for a list of area facilities. You can go on the web and get information or call. Speak with the intake person. You can go to www.medicare.gov for nursing home and assisted living ratings. Each state has a rating also on their state website.
Before leaving the hospital, get a copy of the medical records. At the least, a copy of the medications and discharge plan.
Medicare pays for 100 days of subacute care facility.

Next blog: How to assess if a home is safe for discharge and Understanding subacute rehab from function to payment.

Becoming an Empowered Caregiver: Getting what you need from the facilty

2010-06-14T17:09:23Z

We left off with you at the hospital. You suddenly find yourself the point person of the medical staff for information and decisions. Your relative is looking to you for support and to take care of everything. If there is a situation of decreased cognition or unconsciousness, then you are the voice of the person.

You have now stepped into the official shoes of caregiver, one of the hardest jobs on the planet. It can seem as if you have entered a different dimension of time and space, the twilight zone. I say this because you will be called upon day and night, given information you have no understanding about and asked to make decisions at a moment's notice. Your emotions will feel like a roller coaster ride. This job has no daily hours or end time. You may be woken in the middle of the night to make a decision or run to the hospital or facility in an emergency.

After shaking off the shock, it is important to get control of the situation as best possible. Here are some suggestions.

MEDICAL

Immediately speak with the physician who is overseeing the care in the hospital ER or floor.
Find out exactly what the possible diagnosis is, what tests , blood work are being and ordered and WHY.
Do not hesitate to ask questions each time a new medication is going to be given, radiology test ordered or procedure done.
Make sure the hospital knows of any allergies and there is a wrist band identifying the allergies.
Don't be pushed into making a decision without the answers you need for an informed decision.
Make the request to be told before any changes are made.
If you feel things are worsening, and you are not getting a response from the current medical team, contact patient relations, medical director, nursing director or anyone in a position of power.

ADMINISTRATIVE

Find out about how the systems in the hospital/facility work. Who is in charge of what areas? For instance, does each floor have a supervisor for nursing and/or clerical staff?
Ask who to contact for information for you and family. Get all available phone numbers and extensions. Ask if they do email.
After a few days, ask for a case conference with involved parties including medical, nursing, social work, discharge planning.
Medical rounds occur daily usually in the early morning. It is a good time to speak with the medical team and get an idea of the plan. It means getting to the hospital early.
Make sure HIPAA forms are filled out and in the chart.
If you feel your relative should not be alone, many hospitals allow overnight in the room. Ask about the policy. It is often public city hospitals that don't allow it. You can have private duty aides or nurses if you feel there is a need. Ask what the hospital policy is.
Finally, follow up on everything the doctor discusses with you. It will get done faster if you follow up. Don't think it will just get done. Don't think you are bothering anyone. It is about your relative and their needs.

SUPPORT

Create a support team for yourself, friends and family.
Make sure to take time to eat and hydrate!
If you have a spiritual/religious practice, use it for support. You can ask to have the hospital chaplain visit.

Next is the discharge planning.

Nursing Home/Assisted Living: The Event

2010-06-10T12:11:00Z

Some parents or aging relatives are proactive and decide to make the move to a retirement community or assisted living early in the aging process. Or they have put systems in place in their home for safety and emergencies. For many families, this is not the case. Parents have refused to discuss any long term planning. You realize the health of your loved one is declining and you feel helpless. You have talked to you are blue in the face and know you can only wait and hope nothing serious happens like a fall.

Then one day it happens. You get a call. Your loved one is in the hospital from an acute event whether a fall, stroke or cardiac event. Whatever it is, you have to drop everything and get to the hospital. If you are lucky, you live close. You push down the panic and get to the emergency room. From the minute you arrive at the ER, you know you have entered a new dimension in your life, one with no guidebooks or maps. Here is some advise to helping you get through the ER hospital experience.

1. If you are Health Proxy or have Power of Attorney, bring the papers. Make sure a copy gets put in the chart. This will will give you immediate access to information. You may need to sign consent forms for any procedures or surgeries. This will allow you to speak with insurance companies/medicare if necessary. Hopefully, you will have insurance details beforehand.

2. If the person is unable to fill a HIPAA form, you can tell the staff who has permission to get information. Do not let them tell you only one person is allowed. HIPAA regulations do not state the number of family members allowed to receive medical information. If you have any problems, contact either hospital relations or the compliance officer. You can also add people at any time.

3. Ask to speak with the attending doctor. If the hospital is local for the person, ask to have the primary provider or gerontologist to be contacted for an accurate medical history. You can call the primary care doctor and ask for input.

4. Provide the doctor with a medication list if possible.

5. For any procedures or medications, ask for information as to why it is being done or given. ER always seems like a beehive but don't let that intimidate you. Ask questions.

6. If the person is to be admitted, ask for the case manager. This person can be your greatest ally with the details of care and insurance. If there is no case manager, then YOU are it!

7. You will feel like you are in a daze from the shock of seeing a loved one in the ER. If there are other family members, make sure they are notified. It can help to call one person and ask them to make any other calls. Use whatever support you have in place for you. Just walking into a hospital is stressful. Don't forget to eat and drink fluids!

Next Blog I will talk about Hospitalization and Discharge planning.

The Nursing Home/Assisted Living Saga: Part 1

2010-06-07T17:39:41Z

The next few blog entries are going to be about how to handle a declining family member and dealing with a nursing home or assisted living. There isn't a manual identifying potential land mines or potholes. It is generally learn as you go and playing catch up. It is stressful and emotionally draining. I want to give some tips starting with introducing the idea and having the conversation to picking the right placement to always being vigilant with the person's care.

The first step is having the conversation. It is a conversation you don't want to have with your parents. It is an essential conversation especially if you have noticed any health or memory changes. The conversation is about the plans for the future. Some parents have already decided the situation and are moving into a retirement community with multifaceted services for declining health situations. Make sure you know this is happening so you can check out the facility or community. For many, you may hit a brick wall of resistance but keep returning the conversation of time. Enlist other family members if needed. Unfortunately, sometimes nothing works until a critical event occurs.

It can be difficult for many seniors to accept the changes and the need for a different living situation. Staying in their home is a possibility if it can be modified for safety. Some of these safety modifications are grab bars in the bathrooms, no throw rugs, stairs that are not to steep or a ramp. Local senior centers may have a person who can assess the home for safety. There are services that work with families to keep seniors in the home by providing care as needed and making sure all safety features are in place. I also recommend a medical alert bottom. Some towns provide them free but for most there is a monthly cost. The greatest challenge will be getting the person to wear it! My mother-in-law liked to put it on her bedpost because it just didn't look good. It would have helped her when she fell in her house and suffered a huge head gash. You can enlist the doctor to support and insist on the medical alert and to wear it!

Another important detail before an emergency occurs, is to work on getting legal papers for a Healthcare Proxy and Power of Attorney. If a parent has a traumatic event, you want to be able to make medical decisions. If there is no legal document allowing this, the hospital will make the decisions for you. Included in this is the Living Will which designates end of life decisions as to resuscitation.

The Power of Attorney is a legal document that gives you right to manage all financial and legal matters. It is important to be able to pay bills, speak with insurers, banks and state/federal agencies. It doesn't mean that you will take over now but if an event occurs, you will be ready. There can also be more than one name on the document. Both documents are available at www.legalzoom.com or other legal websites. Each state has separate requirements for how many copies are needed to be filed so check the individual state website. All papers must be notarized.

It is not easy seeing a family member in decline but attempting to get things in place can help now. A traumatic event is like a tornado changing the all familiar landscape. A few preemptive actions can relieve a small amount of stress. Even after multiple attempts at having a conversation, you just have to wait.

Next segment: An traumatic event.

The Point of it all

2010-06-04T16:51:00Z

My niece Emma said something profound to me about the doctor - patient relationship. We were talking about the state of healthcare today on the way back from the airport. She said "The doctor sees me 2-3X a year for 15-30 minutes, I live in my body all year. I know when something is not right. Why do I have to hear, either it's nothing or let's wait and see if it changes." It is a problem for medicine these days. Patients do not feel heard. Visits are generally focused on a specific symptom and the chit chat has left the room. It is a challenge for the medical profession as well as the patient.

My niece's point was she wanted to be heard. She wanted the doctor to respect her and what her body was telling her. I have found patients often pick up the signs of trouble first and these symptoms can be vague. Unfortunately, medical professionals are often restricted by insurance guidelines for ordering tests and the politically correct thinking of evidence based medicine. Evidence medicine is a funny concept to me and like the emperor's new clothes. Since when has medicine not been evidence based. I understand it was started as a reaction to the over use of antibiotics but it has become a restrictive and conservative basis for medical decision making. It is not designed to listen to the patient. If the patient's symptoms do not fit in the box then it must be psychological. Once it is deemed not medical, then the patient is not given any more time. Sometimes, it is nothing but if a patient returns with continued symptoms, then it is time to listen.

Sometimes, thinking outside the evidence based box is essential. In the early days of HIV/AIDS medicine, if we hadn't been creative and thoughtful, our clients would have suffered even more. If there was a hint that something could work, we were willing to try it. Our patients comfort and well being was paramount in our work.

I'd like to think medical professionals do listen but as an advocate, I receive many calls, asking for help finding another practitioner because symptoms were worsening or asking me how to get someone to listen. People know it isn't in their head and the symptoms are real. Sometimes, a new doctor or one test can clarify everything. I had a client who had a shoulder problem. The orthopedic doctor refused an MRI after PT was unsuccessful. I told her to have the primary care order it. She had a rotator cuff injury. She got a new doctor.

I understand that in this litigious world, many tests are ordered that don't need to be. It is a dilemma in medicine whether to order or wait, whether the patient's concerns are genuine or is this person in need of counseling? I sympathize and remember being in that position myself. Whether the symptoms are real or not to you, they are real to the patient and they need to be heard.

A Tribute and Thank You for Those in Service

2010-05-31T16:01:00Z

Today is Memorial Day, a day to remember those who have served our country. My father taught me to love this day with the parades, family picnics and honoring those who had died in the service of this country.

My father served in the Navy in World War II in the Pacific. He was a radioman on the USS Alabama. The war was hard but he told me everyone went and he wanted to serve. Life on the ship was cramped and hot. My father was a very sensitive man and war and injustice was very painful. But it was important to him that he had been a Navy man and I still cheer Navy in the Army-Navy game. The Alabama is retired in the port of Mobile, Alabama. Several months after he passed away, I went to see the ship. It was majestic. The crew's name was listed and in the radio room, there was a picture of him with some of his mates. It was quite moving. He didn't speak of the war much but I knew the experience had changed him forever.

In 1968, my boyfriend went to Vietnam and was killed. It didn't seem real. Many years later, I went to the Vietnam Memorial in Washington,D.C. Another moving tribute to our fallen soldiers. I was able to find his name and etch it onto a piece of paper.

Thank you all who have given your lives and to your courage and dignity. I honor you.

The Penalty for not Having Insurance Exists NOW!

2010-05-27T14:54:09Z

One of the major complaints of those against the new healthcare reform is people will be penalized for not buying insurance. The penalty would occur when filing taxes. This is the case in Massachusetts. Every year the insurance company sends a form verifying coverage. Some people choose to pay the penalty because it is less than paying monthly premiums. But the penalty already exists for the uninsured when hospitalized or an emergency occurs.

I recently had a client in a rural western state with no insurance. She had an accident and was hospitalized for one night and needed surgery for a bone fracture. The bill was $17,000. Her monthly income was slightly above the federal poverty level. She had recently inherited a small sum of money which she planned to put into a retirement fund. She filled out the financial aid forms. These forms were then reviewed by a committee which included the CFO,CEO and Board Chair, hospital billing person and social worker. It was decided she would only be given the standard 20% because she had received the inheritance. I've worked with many hospitals big and small who generally reduce much more or 100% with people who have greater assets and are well above the poverty level.

The bottom line is, if my client had insurance, the reimbursement would have been around $4-5,000. This would have satisfied the hospital. People without insurance are being penalized for being uninsured by having to pay full bills. This hospital is asking my client to sell off part of her inheritance to pay them four times the amount an insurance company would pay. Next stop if she can't pay, collections. There is something wrong with this picture. As much as I don't like a penalty fee, it will always be much less than a catastrophic medical event and subsequent bill.

Tips to Understanding Medical Bill Negotiation

2010-05-10T15:45:54Z

You recently received a bill from a provider, hospital or medical supply company stating your insurance either has paid their part or is not going to pay anything. Or you may be without insurance and have received the final bill for services which is being charged at the highest rate possible. At the bottom of the bill it states that if you have questions or need financial assistance, call the listed number. In a panic, you call the business office. You wait anywhere from 10-30 minutes to get a customer service representative in a large institution or a voice mail in a smaller institution. When you finally get a live person, you are given two options, fill out the financial aid papers or set up a payment plan. Your greatest concern is your bill will go to collections and your credit will be ruined.

Here is what you can do to facilitate what you need.

1. Fill out the financial aid papers if it is appropriate. In some states, it has to go through the medicaid system especially if it is a public hospital. The business office expects you to have assets like a home, car or savings account. What they are looking for is to make sure you don't have several million stashed and could make payment. It will get rejected by medicaid and the business office will make a determination. It can often be up to 100%.

2. Without any serious negotiations, you can expect at least 20-30% reduction. This is standard. You can get more.

3. If you have a coinsurance or deductible payment, it will be difficult to get any reduction. The contract with the insurance company generally does not allow for any reduction in cost. It is rare but a compassionate business manager may give 20% discount.

4. Speak with a supervisor when possible. Business offices make it difficult to get to the supervisor but be persistent. Customer service representatives can not make final determinations. Ask for the name of their supervisor and if necessary, fax a letter. If you get no response, call the business manager or CFO office. You will get a response.

5. Business offices have their own time schedule. Two days usually is five days or more. Do not think they are ignoring you. They want their money. Call to follow up so everyone knows you want to work this out. I like to remind the office, I am waiting and can be patient. It can take months.

6. Always ask to have a note put in the computer stating you are working on a resolution. This way your bill will not be sent to collections. I verify each time I call, the bill is not going to collections. You will continue to receive bills but don't panic because it is automatically computer generated. I also recommend you pay a small amount to show good faith. it can be as low as $25.00.

Know the Insurance Lingo

2010-05-06T22:40:00Z

Knowing your insurance policy starts with understanding the terms used to describe the parameters of coverage. Having a clear definition of terms will allow you to look at any policy and understand what it means. Let's review the terms.

In Network is the term used to designate which hospitals, doctors, pharmacies, diagnostic centers and labs have a contractual agreement on reimbursement with the insurance company.

Out of Network is the term used to designate which hospitals, doctors, pharmacies, diagnostic centers and labs that do not have a contractual relationship with the insurance company.

Deductible is the amount you pay before the insurance company starts reimbursing. Deductibles can start at $0 and go as high as $10,000.

Coinsurance is the per cent you pay for any treatments. For instance, a policy may state the insurance pays 70% and you pay 30%. It will be shown as 70%/30%. There is a difference between the in network vs the out of network ratio of cost. The out of network is a higher per cent usually 50/50. Some policies have no coinsurance.

CoPay is the amount you pay for some medical visits like primary care, specialists and sometimes hospitals and radiology. These payments can range from $10 to $50. Hospitals copay can be as high as $1,000.

Out of pocket maximum is the total amount you have to pay before the insurance pays 100% of cost. The CoPay is not included as an out of pocket expense. It is generally the coinsurance amount. Some policies include the deductible as part of the out of pocket maximum but most do not. There is a separate amount for all out of network costs. It is usually higher.

Explanation of Benefits or EOB is the insurance explanation of the reimbursement break down. It will let you know which part goes to deductible or coinsurance. You receive this after the doctor or facility send the bill to the insurance company and a reimbursement determination is made.

It is easy to confuse copay and coinsurance which are not the same. Many policies have both. It means that when you go to the doctor you pay up front with a copay. If you have a coinsurance, you will find out the amount you need to pay from the insurance EOB.

I advise clients to recheck every year their policy to make sure coinsurance or copay amounts haven't changed.

How Medicare Advantage HMO's Limit Senior's Options

2010-04-29T18:13:55Z

Today a friend of mine got a rude awakening about her father's medicare HMO advantage plan. She is the healthcare proxy and oversees all things medical. She hasn't had any problems until today when she was trying to get her father in to see the leading surgeon for a very specific rare surgery in Boston. Her father was suffering from compromised breathing problem of unknown etiology. Three doctors in the HMO network said it was nothing and would resolve with inhalers. My friend's sister working at another Boston hospital took the CT Scan and showed it to colleague who showed it to the specialist. Both immediately saw the cause and recommended surgery. There should be a big sigh of relief right now but the surgeon is out of network. The policy with Medicare Advantage HMO is no out of network. However, after my friend called the insurance company, she was told that if the PCP advocated for the second opinion and/or surgery, it would be approved. Another sigh of relief except when she called the primary's referral designee, she was told it was not possible and she should stay in network. In a panic, she called me and asked what her options were. This is what I told her.

1. Medicare law allows for a second opinion.

2. The reason the PCP office was not being supportive was by sending anyone out of network, they lose money from the insurer.

3. It is not the decision of the provider but yours. You can firmly continuing to insist on a referral.

4. Call the insurance company for further clarity. Take the name of the person you speak with and write down the answers. If you do not get a good explanation ask to speak with a supervisor. Always take the name and write down the answers.

5. Get a list from the insurance of alternative surgeons. Call these offices and ask how many of these specific surgeries have they preformed. This is way to show the insurance company why a specific surgeon is needed because of experience and training.

My friend did as I suggested by first calling the PCP and the referral person who continued to feel it was not going to be approved. She called the insurance company and ended up speaking with the supervisor. She was told to speak directly to the PCP and request he/she advocate for the referral. She verified the reason PCP's don't jump at the chance to be advocates is because they lose money with any out of network visit.

She is headed in the right direction but it took several hours on the phone and much anxiety. There is hope for her father. She was most concerned that three physicians from three specialties had misdiagnosed her father and didn't want to stay in network. Are seniors at risk from the rigidity of medicare advantage plans? Was "live with it" the prescription because of possible out of network loss? I believe seniors also deserve the very best care if available. I understand cost containment is important but denying a person the proper care for financial gain is not good medicine.

The Rocky Road to Healthcare Reform

2010-04-26T15:56:44Z

It isn't going to be easy getting healthcare reform to happen. Let's start with the lawsuits by some of the states. The premise is the federal government can't tell people or states that everyone has to have insurance. Most of the constitutional scholars on both sides do give it much of a chance. What it does is stir the fires of emotion and fear while continuing the misinformation of reform being socialistic or even communistic. If having health insurance is socialistic, then why isn't mandatory car, mortgage, or home insurance also socialistic?

Then there is the battle of the insurance company vs the state of Massachusetts. The insurance companies wanted to raise rates as they do every year and they wanted the usual pass. Given the current climate, the state flexed its muscle and said no to any rate increases. The insurance companies fought back with putting a freeze on new enrollees. In Massachusetts, you are fined already if you don't have insurance. The insurance companies stated they needed time to assess the damage from no rate increases and how they could proceed. They filed suit in court and asked for an immediate review. The courts ruled at this time that the state was in its right to deny rate increases. The insurance companies said they would start taking new clients again. Last week, they sent out letters to current members that all rates would stay the same as last year through 2010. In the meantime, the insurance companies have filed with the Department of Insurance to allow the increase in rates.

Another issue with the healthcare reform is it doesn't solve as many immediate problems as hoped. For instance, I have a client who will be coming off COBRA and has a pre existing condition. COBRA is considered a creditable insurance coverage. Her state has a high risk pool but the cost is prohibitive. The new risk pools to be set up for June will be equal to the market cost of regular health insurance plans. The law states there has to be six months without any credible coverage for a pre existing condition. My client will be left without any insurance because of her pre existing condition. Maybe she will be able to get regular insurance but it is not hopeful. Will she have to wait six months to get insurance? No one seems to have an answer.

Between the insurance companies, the false rhetoric on the bill and the loopholes, health care reform has a rocky road ahead. Keeping up with the maneuverings is going to be more work than I planned for!

A HIPAA Hiccup

2010-04-23T19:39:00Z

My mother-in-law was hospitalized at Lutheran Hospital in Brooklyn, NY, a level one trauma center for a fall in her house. My sister-in-law is the healthcare proxy for making medical decisions. On the way to the hospital, I reminded her to put my name on the HIPAA release form so I could speak with all the involved parties if necessary. Later, that day she called with an update and I asked her if she had remembered to put my name on the form. She told me, the hospital personnel had refused to allow my name on the form. I asked why and she said it was because I was not there and they wouldn't speak to me on the phone. I told my sister-in-law, the hospital had picked the wrong person to refuse. I knew they couldn't refuse and I, of course, could speak on the phone with all involved parties. I also knew who to call. I told my sister-in-law not to worry, I would fix it tomorrow during hospital business hours.

The next day, I called the administrative offices and asked for the HIPAA compliance officer. I explained why I needed to speak with someone and was transfered to the correct person. I calmly explained the situation of being refused by the hospital to allow my name on the form and requested the situation be changed immediately. The officer took my information and said she would call the floor and find out what happened. Within an hour she had called me back. She had spoken with my sister-in-law who verified my name be on the form and also spoke with the doctors and nurses telling them to speak with me.

Don't let anyone in a hospital or medical office tell you "no" to the name you want on a HIPAA release. It is the right of the patient to decide not the hospital. I find hospitals have started holding HIPAA releases hostage and denying patient's their rights. It is important to have someone on the form who can be your voice when you need it. If you have a problem, contact either patient relations or the HIPAA compliance officer. Don't back down because it is YOUR right to decide not the medical facility. HIPAA was designed for the patient NOT the hospital.

The Making of an Empowered Patient

2010-04-19T13:00:00Z

I talk to people about being an empowered patient. I tell them it's about being in control of your healthcare and partnering with the medical profession to get what you need. I think the key is understanding the role of each of the players in the game of healthcare and keeping your expectations realistic of what each can provide.

I witnessed a client finally grab on to the idea of being an empowered patient after months of decline, no answers and feeling battered by the system. Here is his story. I was called by a family member when hope was beginning to fade. The situation was complications related to a surgery and repeated trips to the emergency room. This young man was declining physically and becoming depressed. His work and personal relationships were suffering. At this point, the surgeon was the only medical provider involved because of the unresolved surgical complications. When I first met my client in the hospital after another emergency room admission, I saw a young man, sad and exhausted. His life was spiraling out of control and he couldn't see any possibilities. As an advocate, I saw the possibilities immediately. It was clear a new medical perspective was needed. Luckily, that process had begun right before I had been contacted and an appointment was set. He didn't make that appointment because he had to go to the ER again but we went to the ER where the new doctor was associated. This time the reason for his complication was determined, treated and he was sent home.

All should have been good at that point, but his local support was not in place. He saw his surgeon as the main player and expected all answers and follow up to be from him. I knew this was not going to happen because specialists only relate to their area of concern. We went to a follow up appointment with the surgeon who was thorough, patient and kind but it was clear to me, he was not going to provide the continued support now that the issue was identified. My client was near tears and feeling abandoned during the appointment. I saw the moment as a critical turning point. I sat him down and said it was good what happened. Now he can be the driver of his care. Only he knew what he needed now from nutritional, primary care, counseling and local specialty services and support. I was determined to switch this situation to empower him to know he could move forward. He agreed I could begin making other appointments for him.

And then several days later, I received a long email explaining to me how he was going to change his live, stop the spiral, try to make the changes he needed and rebuild his life and relationships. I knew the empowered patient had arrived and there was no turning back. His new mantra is "Let's get the healing started". Since that time, he is feeling better, getting the appointments he needs and enjoying his life.

The Mammogram

2010-04-06T16:38:00Z

Today I went to get my annual mammogram. I wasn't really thinking about it until I checked myself in and was sitting in the waiting room. Usually, there are only about three women in the waiting room but today there were ten. All the chairs were taken. And you could hear a pin drop. The fear, apprehension and anxiety in the room was palpable. I knew some of the women were in the room receiving their first test post treatment while others were hoping this was another year clear. Then there were those of us who had never had an abnormal exam or test.

Here we were a community of women, all needing support and no one could talk. No words of encouragement or support. I am generally very chatty but I felt a profound respect for those who needed to be inside themselves to get through the moment. I couldn't even respond when my name was called. I felt mute. Isn't there something the hospitals can do to make the experience more supportive? I don't really think having someone walk me into the dressing room is enough. Music? Shoulder massage? A room for silence and a room to speak? Someone in the room to engage with? I like hearing people's stories and if a woman wanted to share it, I'd like to listen. Where is the human element?

I felt today gave me an opportunity to imagine what it might be like if I got a positive result. How would I feel? What would be my reaction? I let me mind wonder to the unimaginable diagnosis of breast cancer and what it might mean to me. I knew for sure I could never do it alone. I say a big heartfelt thank you to those who have walked the path, both survivors and those past. I can not truly imagine what it would mean. Your work, commitment to stop this epidemic has gotten me to this room today for my annual mammogram.

A Story to Make You Laugh and Cry

2010-03-26T13:27:00Z

I received a call from a young man who was asking about an insurance problem for his father. He told me last year he had gotten insurance with Blue Cross NJ. His father has high blood pressure which he put on the application. He was enrolled and covered for all illness at the onset. One month later, he was having vision problems and went to the eye doctor. The eye doctor sent him immediately to the ER where a brain tumor was diagnosed. Successful surgery was done the next day. He recovered well with no further problems. A year later, a bill was received from the hospital stating the insurance was not paying for treatment due to pre existing condition. The insurance is saying high blood pressure is a pre existing condition for a brain tumor. Needless to say, the son was in a panic.

Here is where we have crossed into the twilight zone. There is no data supporting this premise. What we know is, high blood pressure may be a result of a brain tumor but not the opposite. The father had high blood pressure for a long time. If this is the premise used by insurance , high blood pressure may be the cause of all things medical. Dare I say lucky for us, pre existing conditions may be history very soon. Here is a prime example of the insurance companies making decisions not based in science but dollar value.

Unfortunately, it will now take time and effort to get the insurance company to reverse on appeal. There is so much research refuting this decision. I do think it is a decision that will need to go to an external appeal. In the interim, I have advised the family to gather all the medical notes, letters from doctors and begin the appeal process. When in a situation like this, I advise people to speak with all involved providers, let them know you are appealing and sometimes it is necessary to make a small payment on the bill. As long as it is in the computer files of the billing office, you won't go to collections. Billing offices like to know you are trying to work it out. I also advise to get the financial aid papers filled out as a back up.

So hold on everybody. The ride to implementation of healthcare reform is going to continue to be bumpy.

How to ask for a Second Opinion

2010-03-23T14:36:00Z

Second opinions are important and I have mentioned it before. I know many people are apprehensive to ask the doctor for a request or referral. There is a feeling the provider will hold it against them or take it as a slight about their care. Sometime I hear, I trust the provider and I can't be bothered. Other times people are just too overwhelmed and scared by the diagnosis and looming treatments to seek a second opinion.

A decision to get a second opinion is not necessarily a reflection of your distrust or dissatisfaction of a medical professional. I believe it is a way to gather more information, verify the diagnosis and suggested treatment, and to be empowered to have options. It can seem like a huge step to say to the provider, I want a second opinion, especially if you have a good relationship. People ask me how do I say it? Here is what I suggest. Write down what you want to say to the provider before the visit or phone call. Let the provider know you are going to get a consult for a second opinion. You believe it is important before you move forward with treatment so you know your options. Express your appreciation for your relationship and you would like to review with him/her what new information you may discover.

I cannot say 100% the provider will be supportive. More medical professionals are understanding the value of the second opinion. We as empowered patients have been given the opportunity to help train the medical professionals to value the patient who wants a second opinion. I hope it becomes standard of care for providers to suggest a second opinion.

With any major purchase or decision in life, like buying a house or changing a job, we take time to assess options. The same should be for major medical decisions. If there is a window of time to get a second opinion without causing any life threatening problems, I encourage it. It is my belief everyone deserves optimal medical care which includes knowing your options.

Need Help: An undiagnosed neurological disease

2010-03-16T18:51:00Z

I have a patient I have been advocating for since September. I was hired by the family. Joe (not real name) 44 yr old started having dizziness and balance problems 2.5 years ago. Fast forward to NOW. Joe is in a wheelchair with extreme dizziness and balance problems ( cerebellar related), decreased hearing, constant nausea, visual problems which include severe abnormal eye movements, double vision, ataxia, intermittent headaches, decreased feeling in left hand and muscle weakness. He has been to several neurologists in his local area and in a major city. Every lab and radiological test has been preformed. Nothing is positive. The last neurologist was hopeful and ruled out paraneoplastic syndrome and Multiple Sclerosis. Joe recently spent 10 days in the hospital receiving plasmapheresis treatments with no change. Internet , medline and NIH searches have been done. The doctors are now calling it idiopathic. Meaning no diagnosis, no available treatment, and no hope. Joe was an active husband and father, worked to provide for his family and now spends his days in a wheelchair hoping the day won't be too bad.

There was so much hope with the last neurologist who admitted he was stumped. He was the first one to try anything. However, where to now? I am searching for suggestions as to options, centers, and any known wild and crazy neurologists, neurophysiologists, researchers who like to think outside the box nationally and internationally. What is experimental out there and where to look? Any ideas?