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Birds In Spring: Ten Self-Preservation Tips For A Hospital Admission

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Published: Aug 16, 2011 11:46 am

In last month’s column, I took a look at risks patients face in hospitals, mostly from the perspective of “adverse events” – harmful, even fatal, occurrences that are unrelated to your underlying medical problem.  They occur in almost a third of admissions.

Kent Bradley, one of the commenters on last month’s column, rightly pointed out that on top of the adverse event numbers, you have to consider also medical errors – mistakes that are made in treating you.  So, he posted, “We’re running a much higher risk of harm.”

I passed on the comment to a former hospital chief operating officer I know, and his response was a short one:  “Oh yes.”

The column resulted in a fair amount of emails too that I exchanged with other multiple myeloma patients and caregivers about the need for a “self-preservation list.” Kent said such a list “would help us protect ourselves from all of the threats we face when we enter the hospital.”

I said to folks that I would try to develop one.  So, here’s a list of the top ten tips I came up with:

  1. With apologies to Gershwin, you need someone to watch over you.  The best self-preservation tip I can think of is to have an advocate with you at all times — someone who will ask questions and speak up on your behalf.  Don’t ever think you can handle this by yourself.  There are just too many distractions when you are the patient for you to be able to keep on top of everything.
  1. Question everything.  Ask why things are being done.  Don’t accept something like, “We’re sending you to radiology for an MRI to look at your whatever.”  If you just say OK to that, you’re going to wonder what they’re looking for and you won’t know anything until the next time you see your physician, which could be a full day later.  I know that this wouldn’t bother some people, but it should.

    For those ceaseless IV bags and bottles, ask what it is, why you are getting it, what it’s for, and who ordered it.  In one of my many hospital stays, I needed a blood transfusion and the nurse hooked me up.  In looking at the bag’s information, the blood type was different than mine, so we asked the nurse if that was all right.  She said, “Oh, they don’t make mistakes.”  Yes, she really said that.  Giving patients the wrong blood type, by the way, is one of the most common medical errors.  The nurse did reconsider what she’d said because she came back in the room a few minutes later and said she called down to the blood bank and was told the blood type was compatible with mine.

    Errors such as giving people the wrong infusion are less likely to happen with the advent and spread of electronic medical records systems, with bar codes and scanners.  But I wouldn’t get too comfortable thinking the problem has gone away.

  1. Bring a laptop, netbook, or tablet.  A smartphone works too, if you have no other option.  This is not about staying in touch with the outside world and your friends.  You need to be able to access the Internet to get more information about what’s going on around you.  In the blood transfusion episode, for example, I was on my laptop checking on blood type compatibility and had an answer before the nurse came back.

    Access to the Internet gives you the ability to research, for example, those unfamiliar terms that get bandied about, and to check up on those unknown attending physicians and doctors who are liable to drop by.

  1. Take notes.  This is a good job for your advocate/caregiver, but you should get in the habit of writing down your conversations with the medical staff about developments in your treatment.  In the hospital, a considerable amount of information often gets passed to you in a short time by doctors, and it’s easy to forget some of it.  Without notes, I guarantee there will be a moment when you’ll go:  What did they say about…?
  1. Insist on a private room.  You’re a myeloma patient for goodness sake, and your immune system is likely lousy, especially if you’ve had a stem cell transplant.  Most hospitals understand your vulnerability, and they are also under an awful lot of pressure to cut an astonishing rate of hospital-acquired infections.  So your demand won’t fall on deaf ears.  You don’t need some other sick person in the room with you, and you don’t need their visitors, especially during flu season.  Your doctor should back you up on this.  Sometimes, you won’t get a private room and you’ll have to make the best of it.
  1. Bring lots of disinfectant.  I don’t care what they tell you, hospital rooms aren’t all that clean nor germ-free.  Wipe down everything in sight.  Everyone I know who does this reports that the staff looks at them like they are crazy.  Ignore what the staff thinks – you’re right, and they are wrong.
  1. Get on good terms with the nurses on your floor, and try to keep it that way.  As in any profession, there are good ones, and, um, not so good ones.  Don’t battle with the bad ones because you won’t win and they can make your life miserable when they are on duty.  If a nurse gives you what you know to be bad advice, ignore it.

    It’s important to understand that your nurse is your connection to the hospital bureaucracy.  They know their way around it, and, better still, they can navigate it and get to places you can’t.  Don’t be afraid to ask for his or her help.  Always remember that you are not your nurse’s only patient, but you are your only patient.

  1. Check out the hospital before you go there.  You can do this at the Hospital Compare website at the federal Department of Health and Human Services.  You should particularly check out the Process of Care Measures in the hospital’s profile.  This website will give you a good idea of how a hospital fares in a wide range of measures versus the rest of your state and the nation.

    Unfortunately, at this point Hospital Compare doesn’t provide MRSA (methicillin-resistant Staphylococcus aureus) data, but they are promising to add it.  Nobody wants to get MRSA, especially those of us with compromised immune systems.

    A Harris poll in late July found that we’re all concerned about hospital acquired infections:  75 percent of respondents believe lower infection rates are more important to consider than convenience for a hospital; 94 percent would prefer to go to a hospital that uses the latest technology available for preventing the spread of infection.

  1. Bring your own clothes.  This may sound silly, but if you are in a hospital gown or hospital clothing all the time, you are at a disadvantage.  Your attire screams, “I am a patient.”  Changing into street clothes every morning says, on the other hand, “I may be a patient here, but I am also an individual and I should be treated on equal terms.”  It’s a subtle way of raising your image in the eyes of the staff.  It will also make you feel better.
  1. One final thought.  Ask yourself, “Is this hospital admission really necessary?”  Most of the time, the answer, of course, will be yes.  There are going to be occasions, however, when the decision may be up to you.

    This happened to me this past winter when I had a nasty respiratory infection, but I was not particularly feverish.  (A temperature of 101-plus is the trump card for admission.)  I went back and forth with my doctor, who clearly leaned toward my going to the hospital but lacked an obvious clinical reason for admitting me.  I decided to get a prescription for a strong, oral antibiotic and promised to stay at home and rest.  Not exposing myself to the risks that abound in hospitals – particularly during flu season – entered into my decision-making.  I got better at home, and I was way more comfortable.

    Sometimes, you just have to say no.

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Photo of Lou Ganim, monthly columnist at The Myeloma Beacon.
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13 Comments »

  • Fitzmarek said:

    Very important points, thank you.

  • Lori Puente said:

    Good job Lou. If you can't get a private room, insurance, availability, etc., then keep the curtain drawn between you and the other patient. Just politely explain that you have a suppressed immune system and you need every barrier you can muster. I do this in the infusion/transplant center when Dave is neutropenic. It was advice given to me by a Research Nurse who came to chat with us about some questions I had.

  • Lee Cheney said:

    In addition to verifying IV fluids and correct blood type, make sure to question all medications they bring you. I have been with family members when they were in the hospital and were brought some other patient's meds. If I hadn't been paying attention, I'm sure "my patient" would have taken the meds and with no telling what results!

  • HannaO said:

    Great points Lou, and thank you for doing this.

    As promised, I started to post some of our FB group's data about this and other topics here http://goo.gl/nPGk8

    We all appreciate this information.

    With gratitude,

    HannaO

  • Lou Ganim said:

    Thanks for your comments. I think that the fact that we have to consider self-preservation when we check into a hospital is really unfortunate and a sad state of affairs. But the risks are pretty high. The Institute for Medicine estimates that 98,000 people die every year as a result of preventable medical errors; that's a pretty sobering statistic.

  • Christa's Mom said:

    One other thought to add...Be careful if you have to switch services while you are in the hospital. The new docs may be very knowledgeable about the problem that caused the move, but they may not no anything about myeloma! While EJ was having his SCT he was moved from BMT to cardic intensive care due to a drug allergy that was causing heart problems. The new docs new everything about his heart, and very little about the needs of a SCT patient! It was a battle to get them to understand that he couldn't have anything stronger than Tylenol for his fever.

  • Susan Morse said:

    Lou, your points are excellent for any hospital patient. I am going to print this - a keeper. My sister is still recovering from a hospital-acquired infection that turned out be worse than what she went in for. Doctors and nurses mistly do a great job but they are always under pressure and are subject to error.

  • Lou Ganim said:

    What you point out Christa's Mom is so true. I had to find a new, regular myeloma doctor about a year and a half ago. There are some pretty heavy-hitter doctor types in New York City who treat myeloma and I checked them all out. None of these guys were at Sloan-Kettering, unfortunately. I discussed this predicament with another one of my doctors, and he gave me good advice. This gets to the problem you relate: He said that everything that's done at a cancer center such as Sloan is done from the perspective that the patient has cancer -- cardiology, pulmonology, whatever. You don't want to lose that, he said.

  • Lou Ganim said:

    Hi Susan -- Although some of the list is myeloma-specific, I think most of the items are good for anyone going into the hospital. That is too bad about your sister. Since I wrote last month's column I've heard from several people who told me of medical errors that happened to them.

  • Kent Bradley said:

    Thanks for all your hard work on this Lou. I've been offline for a while (not disease related) and just found your post. Hopefully I'll be able to stay out-patient for years to come, but these tips make a lot of sense wherever we obtain treatment or consultation.

  • Karlene said:

    While I "only" have MGUS, I am so appreciative of your blog. I found it today and started at the end and then went to the beginning. It makes MM so much more human rather than abstract tests and numbers that I am researching. I have Multiple Sclerosis also; so I've had my share of doctors both good and bad over the years.

    One definitely needs their advocate in the recovery room. I woke up after one of my knee surgeries with an allergic reaction to Demerol. Never had it before and when I was taken to my room, the nurse wheeled in a PCA loaded with Demerol. Fortunately, I was with it enough to tell her that I had a reaction in the recovery room. This is so far the only really bad near miss in my medical journey.

    I am going to the NIH in September for the natural history clinical study for MGUS. I was dx'd in 2004 but my possibly now "ex" primary doctor didn't tell me until this last spring. I've donated blood for genetic research for Multiple Sclerosis and thought why not volunteer for the MGUS study.

  • Lou Ganim said:

    Hi Kent -- it was your insightful comments last month that prompted me to do this...thanks!

  • Lou Ganim said:

    Hi Karlene -- Thanks...for finding my columns useful -- I really appreciate that. I'm just trying to pass on information to myeloma patients and families in a way other than just presenting the cold, hard facts. I admire your commitment to clinical trial work. It's an important, selfless, contribution. Oh, by the way, I have a friend who has had MS for many years and has gone through many ups and downs with treatment, especially "experimental" regimens and drugs. Earlier this year, she saw a nutritionist in NYC who prescribed for her a radically altered and far-reaching diet. My friend is astonished on how well this has worked for her. Her husband told me that she hasn't been doing this well, or feeling so good, in several years.