Most of us feel overwhelmed and helpless when given a life changing diagnosis. All serious illnesses rob you of your intelligence and initiative; depression in particular whether alone or with other illness. It is very important to ignore these feelings and to seek help aggressively. Imagine how you would react if it were child that was affected, you would be relentless. Treat yourself the same way.
Research – If this problem were in your professional domain, you would know how to find a solution: Internet, research librarians, co-workers. Treat your health problems the same way. Read everything you can. Talk to as many people as possible, professionals as well as patients. You may want to be circumspect about what you share at work. Once work knows of your serious medical condition, you will be treated differently. Whether it is illegal or not it is human nature to make plans accordingly. If you are likely to be incapacitated for any length of time, no boss is going to go through the charade of assigning you a critical role in a project. While some accommodation may be welcome, you may be better off, not sharing any more than necessary with people at work.
Support Groups – This is not the same as group therapy. Hospitals often host support groups for patients dealing with a particular disease. There are also support groups for the patient’s family members. The experience, as well as the emotional support of others is hugely important. You will feel less alone, less helpless, and get genuine empathy from people who have been through it before you. These support groups are typically free, yet they can be invaluable to you.
In summary, fight your issue on multiple fronts, using your problem solving skills, while dismissing your doubts and fears. Even though you may have little control over the course of a disease, you do get to choose how you handle it.
Pre-approval – Get this before you start. It saves the expense of an uncovered/unauthorized visit.
Log – Not only are you doing battle with your illness, but insurance companies are also your enemy. Keep a log of all contacts, email, conversations etc. noting date, time, full name of person called. The insurance is all ready doing this, so you need to do it as well. Require any denial or acceptance of coverage in writing.
Parity – Insurance companies in MA are required to cover biologically based mental health issues the same as any other medical problem. Your plan will likely limit the number of visits, but you can push for more.
Appeals – You can appeal an insurance company’s denial of coverage, but your best bet is to demand the coverage before hand. They are expert at turning down appeals. They do it every day.
Lawyers – A lawyer is worth considering if the disputed coverage is significant. The claims at any insurance company are evaluated based on liability, not need or other ethical considerations.
Overall, insurance companies are run by bottom-feeding scum sucking slime balls. They are lawyers. But, telling them what seems obvious to the rest of us doesn’t seem to help. Be polite. If you find yourself losing it, end the conversation and call back at another time. I know the prospect of being on hold for 20 minutes does not make this easy, but you are smarter when you are not angry.
COBRA is a good deal for you. Your previous employer would love to get rid of you. So make sure you pay your premiums on time.
There is a nasty little surprise waiting for you when you start your new job. COBRA premiums are paid a month in advance, and there is no prorating if you accept a job in the middle of the month. COBRA generally requires a month or more notice before it ends. If you think you may be accepting a job, hold off paying your COBRA until the 15th of the month. I prepaid COBRA, and was unable to recover the next month premium in spite of giving them notice. If you do not pay, then you do not have to fight to get your money back.
If you accept a job after you have paid for COBRA, negotiate with your employer to defer your coverage with them until the start of the next month. This avoids your paying for double coverage. You may even be able to negotiate the company’s contribution since you are saving them money too.
If at all possible, do not go to an ER for urgent care. Start with a call to your primary care physician, no matter what the hour. Some plans require this. If you can wait, ask for an appointment during normal office hours. Most doctors would prefer to see you in the office, rather than send you to an emergency room, even if it means they have to stay late at work. For common problems, consider a call to your health plan. Larger plans have registered nurses on duty around the clock to answer your questions.
Plan on being there a minimum of 6 hours. It is common to have to wait 30-60 minutes before you are even checked in. If you want faster and better service, you have to be so sick that waiting won’t be your main concern. It is actually good if the ER does not get too excited. It means the doctors do not think your condition is not serious.
To get decent care, you will have to ask for it, repeatedly. Do not assume the nurse will appear instantly after pushing the little “call” button. If you are unable to hop off your bed to chase down a doctor or nurse, then you need an advocate. Bring a spouse or friend to advocate on your behalf. If you want your advocate with you at all times, which is a good idea, you may need to sign a health proxy or consent. Do it. Your advocate and you, if possible, should understand everything that is going on, how long it should take, what are the expected outcomes, what are some negative signs.
You and your advocate are not trying to second-guess the doctor’s opinion or judgment, but you must ensure that everyone involved in your care is considering all of the available information. While at the Beth-Israel ER, the chief of emergency medicine casually told us that my son should be ready to go home. When I informed him of the results of the last test, and what orders had been written, he reconsidered.
If you do not understand something, ask the doctor or the nurse to explain it to you. Negative test results are good. For example if you test negative for Ebola Hemorrhagic Fever, then you do not need to worry about blood spurting from your eyes. Do not be intimated by words you do not know or understand. Latin is a wonderfully precise, unambiguous language well suited for describing a patient’s condition. Doctor’s spend years learning the correct terminology. So if your Latin is a bit rusty, get a translation. You can help the doctors do a better job, if everyone is speaking the same language.
Your advocate is the one person who sees the entire picture and is with you, the patient, the entire time. Your advocate hears the thoughts of all of the doctors and nurse that examine you. Typically, your chart does not reveal all of the tentative diagnoses that your doctor has eliminated. A second doctor (or his lawyer) may advise unnecessary tests just to be sure. The problem with unnecessary tests, beyond the discomfort expense and time wasted, is the risk of a false positive. For example, a false positive reaction to a tuberculoses skin test is common. While a simple chest x-ray eliminates the possibility of tuberculoses, it is better to skip both tests.
An advocate does not need medical training to recognize when a patient’s condition has changed rapidly. Vital signs should remain stable. A rapid change in any vital sign is reason enough to call for a nurse immediately. Easily observed vitals include breathing, skin color, composure and degree of pain. If a patient is thrashing around, the advocate does not need to make a diagnosis, just call for help.
ER patients who get a room are normally connected to a monitor, which shows blood pressure, pulse, rate of respiration, body temperature and often a cardiac tracing. Again, the advocate does not need to understand what of the readings mean to be able to observe a rapid change. While this information is available to the nurse or doctor outside of the room, do not assume the monitor it is being watched all the time, or that a beeping alarm is being attended to.
You may not get a room or even private cubby. I have been in two Boston hospitals, were ER patients are seen in the hallway. Not only is there no place for an advocate to sit, no privacy for the patient, but there is no equipment for monitoring the patient. Even though there may be a dozen doctors and nurses near by, do not assume that any of them are actually paying attention to you. In this case it is especially important for your advocate to be attentive.
Small hospitals outside of the city typically offer much better service than a big city teaching hospital. They have fewer beds, less chaos, and less overcrowding. For simple problems like a tick bite, a few stitches or a simple bone break, a smaller hospital may be preferable.
Updated 08/31/2008 01:51:53 AM by Pop