Misty and Phil's 20 Rules of Thumb for Dealing with Extended Illness

Provenance: These were gradually assembled during idle hours spent in hospitals—and we spent many hours in hospitals—so most of them deal with the hospital rather than home-care situation.

  1. Dealing with an extended illness is a major task and, at times, needs to be given priority over everything else.

  2. Remember Michael Lerner's "quartet" of complementary therapies that—properly done—cannot do any harm and probably do a whole lot of good:
     

  3. Continued social interactions are among the most powerful predictors of survival, and statistically have a much stronger effect than many drugs.

  4. If you are in a hospital that has nicer public areas (lobbies, waiting rooms) than clincal areas, it is probably for-profit. And you probably don't want to be there. High nursing staff turn-over is also a really bad sign and can easily be ascertained in casual conversation with the nurses.

    In contrast, if you notice that the nurses are frequently sitting around just chatting with each other or playing solitaire on the computer, this is a good thing (assuming, of course, no patients are in need of help) since it means the ward has sufficient staff to handle emergencies. A standard maxim of organizational behavior is that an institution carefully managed to eliminate all waste and excess labor is almost certain to fail in a crisis.

  5. Make no assumptions as to the competence of medical personnel based on race, gender, ethnicity, national origin or, surprisingly, even age. Competence and incompetence comes in all flavors.

  6. If you are the care-taker, always use the stairs in a hospital, not the elevator—it is the only exercise you will get.

  7. A person in a hospital always needs an "advocate"—a friend or family member who can make sure everything is taken care of. The existing system depends on this: nursing staff alone can't do it. A hospital is incredibly decentralized—it is like a flea market, not a corporation.

  8. Find a place in the parking garage where there are usually spaces available, and always park there. The last thing you want at the end of a long, stressful day are problems finding your car.

  9. Buy a good medical dictionary—we used Taber's Cyclopedic Medical Dictionary, 19th ed.—and the latest edition of the Consumer Reports Consumer Drug Reference. If the medical dictionary doesn't have a good anatomy reference section, get an anatomy book as well. Learn the medical vocabulary relevant to your situation and use it when talking with professionals: it signals that you have an understanding of your illness, and you'll get more information in return. That said, it is always okay to ask for someone to explain a term you don't understand.

  10. In a research hospital, odds are pretty good that the wireless connection will allow you to read otherwise inaccessible medical journals that their library has subscriptions to. Meanwhile badger your member of Congress to insure that the public has open access to the results of all Federally-funded research.

    And speaking of "wireless", get a TV-Be-Gone remote to shut off televisions in waiting rooms when no one is watching. Only $20, and yes, it works.

  11. You cannot get addicted to pain medication when you are using it to control pain, and pain is much more easily controlled from the beginning, rather than later after it has gotten out of control. In Kansas at least, pain control is now taken very seriously, and the hospital has professionals who are solely concerned with this.

  12. Doctors and nurses generally don't get along. Your information will come from doctors, but most of your care will come from the nursing staff. From a doctor: "Nurses view information as a potent drug, to be given out only sparingly." Experienced nurses, meanwhile, usually have a pretty good read on the quirks of individual doctors.

  13. Use an independent pharmacist, not Wal-Mart, Target or Walgreens. Wal-Mart might save you a bit of money; an independent pharmacist might save your life.

  14. One of the most common causes of major medical errors in hospitals is giving out erroneous medications. Some nurses we talked with said they would never take a drug unless they saw it taken out of a labelled package. See note 1.

    Unexpected drug interactions are also potentially very problematic—the number of possible subsets of drugs that could create an interaction rises exponentially (2N-1, if you really want to know)—and in a complex treatment, it is quite possible that no one has ever before been taking exactly the same drugs you are. They certainly haven't been doing so in your body and with your medical history.

  15. Buy a plastic pill organizer, and keep track of medications in a spreadsheet: no one else can accurately keep track of these for you. Remember that some herbal supplements, notably St. John's wort, interact strongly with some prescription drugs.

  16. Make a list of the brand name and generic equivalents of drugs, per the example in note 3. Medical personnel use the names inconsistently, though the most frequent source of confusion is that the medical personnel use the brand name but the pill container from the pharmacy is labeled with the generic name.

  17. Always get copies of all of the test results, interpretations of X-rays, MRIs and CATs, and anything else that might go into your file. You have a right to see all of this and—this happens frequently—these reports may get lost or discarded over time.

  18. If you get in a situation where you seriously feel that you are not getting proper attention, go to the hospital administration. Do not threaten to sue or report them to regulatory authorities: they have lawyers to handle that. Say that the quality of care is inconsistent with other hospitals in the area: they are competing for patients and can't recover reputation within the community.

  19. Be nice: everyone is having a tough time. Squeaky wheels don't get greased; sqeaky wheels get additional invasive tests, and more tests do not necessarily translate into better care.

  20. Everyone, in every hospital, hates the radiology department.

Notes

  1. Miscommunications between different specialists concerning drugs are commonplace. If a drug seems incorrect, question it.

    One of the stranger experiences we had occurred when Misty was prescribed a very powerful antibiotic to deal with a persistent infection. There was some concern that she could have an allergic reaction to it. We got this information after the regular staff had left for the day, and we were referred to a resident to ask about potential side-effects. He pulled out his Palm Pilot, looked up this information, and got really coy about the situation "Well, you know, even Tylenol has side-effects…" But he thought not taking the drug would be a prudent choice.

    A couple days later I found, on the web, what was certainly that list of "side effects" he was looking it. At the top of the list: "Death -- 3%"

    On rounds the next day, the ward oncologist (without going into details…) used this refusal as an example to his residents of what an informed patient should be doing in this situation.

  2. A widely quoted Institute of Medicine study puts the number of "avoidable deaths" attributed to medical errors at 100,000 per year. That's 2.5-times the number of deaths from traffic accidents. The number of "injuries" due to mistakes in medication is put by another study at 1.5-million. These figures are not reassuring.

  3. Example of brand name/generic translation table

    Brand name Generic Name
    Tylenol acetamenophen
    Motrin ibuprofen
    Aleve naproxen sodium
    Lortab hydrocodone+
    acetamenophen
    Percocet
    Roxicet    		 oxycodone+
    acetamenophen
    Oxycontin oxycodone
    Roxanol morphine
    Ativan lorazepam
    Valium diazepam
    Megace megestrol
    Coumadin warfarin (yes,
    the rat poison…)
    Neurontin gabapentin
    Myralax glycolax
    Reglan metaclopamine
    Decadron dextamethasone