Chapter 6: Hospitalization 101

What every person ought to know before they become hospitalized.

I’ve noticed that since I wrote the last installment I’ve felt like writing again, and about more than what happened to my son and my family this past summer. I’m getting ideas and concepts about projects I want to tackle that don’t involve my home. On one hand, these are good signs. They mean I’ve done what’s necessary to put closure on recent history, called enough energy back into myself to be able to think about launching something new. On the other hand, it plays right into one of my (many) character flaws — that of not finishing what I start. That’s something I don’t want to carry into my new life, so I’m going to finish these last two chapters and put that part of my life to rest, too.

If I’m proud of anything that transpired this summer, it is the way my son has grown through it all. The boy who ended up inside the bedrails June 1st 2005 was not the same young man who emerged from them on August 8th. He’d gone from being a patient to being a person, from a victim to a victor — as corny as it may sound, it’s true. The path from the latter to the former had to be carefully navigated; a mis-step at any time could have landed him in either the morgue or the Home for the Perpetually Disabled. What’s more, it wasn’t easy — the easy route would have been to continue to be a “good boy” and let the nice hospital professionals do their jobs, undeterred by pesky patient intervention. It took spine and guts to stand up for himself and be his own best advocate — not to mention a willingness to listen to all sides, and to ask questions until an answer was received.

Here’s a list of some of the steps he took, and things he learned in order to emerge from his ordeal successfully:

• The first step was in getting free of the pain medications, as I have mentioned before. This is more difficult than it sounds, because pain is seductive and hypnotic and fatiguing, and there does come a time when you will do almost anything for a few hours free of
  it. In consenting to have your pain managed by narcotics,
  tranquilizers, and/or barbituates, you are making it more
  difficult for the health care professionals around you to take
  you, and your objections, seriously. You are making it that much
  easier to be talked over, and around, and basically ignored when
  your questions or wishes aren’t conveniently answered. I won’t
  advise anyone to try to “gut it out” without pain meds altogether
  — but I do recommend you think seriously about your options
  before you consent to go on morphine, or even Percoset. There
  are alternatives to drugs for pain control — try acupuncture, meditation, self-hypnosis before you ask for a pill
  or a shot.

• The next step was to arrange for an adult to be in the room with him
  as much as possible. Needless to say, we couldn’t stand watch
  24/7, and often enough the doctors we most needed to see came by
  so late no one else could be there, but we did our best. This was
  simply to have a witness in the room when doctors or other
  treatment professionals came by to check in, ask him questions, or
  recommend treatment. With eight or nine specialists involved in my
  son’s case and no family phyisician to oversee them, it was
  critical that someone who wasn’t my son be there to help
  him keep it all straight, and to keep him from being talked over.

• In addition to that, I recommend keeping a journal. Write down
  what each specialist says, what the nurses say, what the physical therapist says, etc. Read your notes back to each one and see if they agree that you have the essence of what they are trying to communicate. Get them to initial it if you can. You can use this to show other doctors or nurses who are attempting to override what the last one said — usually simply because they haven’t been updated on the latest information regarding your care.

• Keep a log. The log is for keeping track of visits and times. When you push the call button, record the time. When someone responds, note who responded and the time. When they actually meet your request or answer your question, note that time too — this won’t always be the same as getting an initial response. Get the respondent to initial this too if you can. It’s terrible to have to
  say this, but once the nurses know you’re keeping this kind of log, their responses to your call will be quicker all around. Also log each lab technician’s visit and the reasons they’re drawing your blood — you would be dismayed to know the number of blood draws that are done for duplicate tests ordered by different doctors who haven’t had time to talk to one another. You or your insurance company has to pay for each one of them.

  The log should also record diagnostic procedures that are ordered and the dates and times they are completed. Again, the number of duplicate (or mistaken) X-rays and MRIs and CT scans that were ordered in my son’s case were stopped completely once he and I started keeping a log.

• Another good tip is to remember two magic words: You’re Fired. Remember that you have the right to use those words. If my son had known he had the right to fire incompetent doctors and/or insensitive nurses, his stay would not have been as protracted as it was, nor as uncomfortable.
• More jargon to remember: AMA doesn’t always mean “Against Medical Advice.” Sometimes it just means “Against My Advice,” especially when being used by a doctor who’s being thwarted. They use AMA as a fear tactic in order to force the patient to comply, for if they write “AMA” in your file, or so they tell you, it’s possible your insurance company will refuse to pay for your stay. We only found out later that some insurance companies would rather see a patient refuse unnecessary or duplicate treatments in order to save on costs.
• Just because a doctor tells you something doesn’t make it true. We actually had a gastroenterologist tell us, with two other witnesses in the room, that the human body does not become accustomed to chemicals. Obviously, he’d never heard of “addiction,” or even “physical dependence.” Remember that some doctors are more interested in winning an argument than being right — and that they too are only human. And you can ALWAYS get a second opinion!
• Remember your manners. If you were unfortunate enough to have been raised without them, buy or borrow a book. Remember “please” and “thank you” and “no, thank you.” Give your caregivers a basic amount of politeness and respect — what’s more, insist upon it in return. This will go a long, long way in improving the level of your care. Fortunately, the nurses and doctors were all very impressed by my son’s good manners. He did get angry sometimes and he did yell and he was in a great deal of pain and they’re all trained to anticipate that. It turns out, what they weren’t prepared for was politeness. It made a difference.
• If you don’t have one, get a physician who will listen to your health care preferences, who knows your body and how it likes to be treated. This doctor will sometimes be your only defense against many specialists who only see and treat a part of you, rather than the whole of you.
• Don’t pay $10 for a (one) multivitamin. This is what the hospital charged my son for the daily multivitamins he took — $10 each. California just passed legislation requiring hospitals furnish their price lists to prospective patients, and I wished we’d had one before my son became hospitalized. You can buy an entire bottle of multivitamins for what he was charged for one — and if you’re ever in a position to have to pay for your own stay, those $10 multivitamin pills (along with other horribly overpriced items) are going to add up to a $100,000 hospital stay in a big hurry.
• The last step may seem obvious, but if you’re in for a protracted stay it’s not. Keep the overall goal for your visit firmly in front of those who are busy treating you. Remind nurses that you’re eventually getting out of the hospital and resuming a “normal” life. Remind the various specialists that there is a life after a hospital stay and that you want yours to be as rich and full as possible. Like any other fallible mortal, doctors can sometimes forget to look for the forest amid all the trees. It’s your job, as the patient, to keep the overall picture in mind and to remind others of it, too.

Hospitals and health care have changed a lot in the last few decades, like everything else. From the experiences we’ve had, I can’t honestly say it’s all been for the best. Knowing what I listed above would certainly have saved us all a lot of anguish and sleepless nights, and perhaps would have helped us feel less trapped by a system that has become less concerned about the health of human beings and more concerned about the health of the corporate bottom line.

It’s also true that the inhumanity of the system has allowed what’s best in human beings to shine. It’s what I’d like to take away from this experience, and how I’ll be concluding this tale, next time.

The sixth in an ongoing series of attempts for the author to make sense of the expensive, inefficient, and nightmarish health care system, and her family’s experiences while trapped in it.

Quote of the Day: The mystery of life is not a problem to be solved but a reality to be experienced. –Aart Van Der Leeuw
Metaphors For Life’s website