Internal Bleeding – Be your own Health Care Advocate

The following post was written about nine years ago. Since that time, some of the changes noted below have taken shape, but the message remains important. Be your own health care advocate.

A few years ago, two doctors looking to improve the quality of health care in the US, wrote a book called “Internal Bleeding: The Truth Behind America’s Terrifying Epidemic of Medical Mistakes.” Since Drs. Robert Wachter and Kaveh Shojania wrote their book, improvements have and continue to be made, but with the concern over the US’ 38th position in health care quality, while being the most expensive system in the world (according to the World Health Organization), I think it is appropriate to belabor a few of their key points, in particular, being your own health care advocate.

In today’s world, we must be the navigators of any customer service we receive whether it is at a bank, the driver’s license office or in a retail store. We must be diplomatically relentless in trying to gain the service we expect and need to resolve an issue. Service providers, in particular those in a Call Center, need to stay on script as much as possible. When your problems get them off script, then your navigation diplomacy skills are needed the most.  I mention this as context for what we also must do in gleaning good health care service.

A few years back there was a study conducted by a combined group called the “Leapfrog Group” to improve the quality of health care in hospitals. Leapfrog came up with three major ideas – (1) Electronic orders were a must (poorly written prescription orders were killing people), (2) Intensive Care units need to always have a doctor on site and (3) Medical procedures of import need to be done in centers of excellence, not where a hospital may have done only a handful of surgeries in this area. “Internal Bleeding” echoes many of these same issues, especially the one on electronic order taking. Yet, they also go beyond these Leapfrog issues.

They noted that often times in hospitals, fewer critical questions are asked closer to the time of the procedure. Sometimes, the critical mistake may have occurred very early in the process. They used the analogy of all of the holes in Swiss cheese aligning to allow a mistake to pass all the way through. They used the example at Duke University where a famous heart transplant for a minor child occurred. The doctors at this very fine medical center, one of the best, were so excited when a heart of a young deceased donor became available, that they assumed others had checked that the type of blood of the donor matched the patient. It did not and the patient died. Similar examples occurred when doctors operated on the wrong leg, arm, kidney, lung, etc. The doctors failed to ask the very basic of questions and assumed these issues had been resolved.

In addition to the above and related to the Rx orders, the authors advocate the patient understand fully what is being done to them in the hospital or before they get there. They recommend you introduce yourself to every care giver who comes into the room, ask questions of them relative to medications you are being given and make them fully aware of other medications you are taking. They recommend if you cannot speak for yourself or are uncomfortable in so-doing, to delegate this important role to someone you trust. In other words, they are recommending being your own health care advocate. This will help minimize mistakes.

Health care is both a science and an art. It also is a trial and error business, so the doctors may not know for certain what is wrong with you and have to figure it out. They will do their best, but they do not know you very well or at all. So, you have to play the role of information provider and advocate.  Using the authors’ recommendation supplemented by other sources of information and experience, you must be your own health care advocate and do the following to get the care you expect and need.

– Write as good a summary of your and your family medical history as possible. Make it available to others you trust who may need to speak on your behalf.

– Before you see the doctor, write down your symptoms and questions as you may get stage fright when you see the doctor’s white coat.

– Do not be scared to ask questions, especially if you do not understand the diagnosis or remedy – he or she is there to serve you. I tell my kids you show your intelligence by asking questions, not by failing to ask.

– Get a second opinion on major diagnoses. For example, it takes a lot of practice to read a mammogram correctly and a non-inconsequential percentage of misdiagnoses occur. Using this example, computers cannot take the place of human fingers in doing a self-test. If you feel a lump and the first mammogram shows negative, get a second opinion.

– Make sure you inform your doctors and pharmacists what drugs you are taking. There are a number of drugs that contraempt the drug you need (make its use less effective) and some which are toxic when taken together. I ask my pharmacist questions all the time about some over counter drugs that may be harmful when taken with the prescriptions my family is taking, including me.

– Take your medications as prescribed and through the dosage. Many people stop taking their meds when they start feeling better.

– Be truthful with the doctor about your drinking and extra-curricular drug use. Doctors tend to believe patients understate their drinking, so help them out and tell them the truth. You drink more than you say you do.

– Make sure you get treatment for a major problem at a place that does a lot of what you need – a center of excellence. This is especially true with back or spinal surgeries and surgeries on any major organs. If you are having heart surgery, do you want it done where they have done 25 in the past year or 250, e.g? I have two friends who are having major back complications after spinal surgeries were done poorly.

– Get all the information you can around procedures to make informed decisions. In some cases, living with a mild discomfort with medication may be better than invasive surgery. Ask the doctor what are the options, what are the chances for success and what are the risks. If he/ she doesn’t know, ask him/ her with whom you can speak.

– Be diplomatically relentless with Call Center personnel at insurance companies. Mistakes do occur and sometimes you may be allergic to a substituted generic prescription. So, you can appeal a claim if you feel under-served.

– This one comes courtesy of Dr. Sandra Steingraber, an ecologist, biologist and cancer survivor. Family history needs to recognize your environment as well. She was adopted, but her bladder cancer at the age of 21, also occurred in other family members who lived nearby (as well as other cancers). Bladder cancer is a bell-weather cancer. It is largely caused by environmental toxins. If your family, neighbors or community has some longevity in an area and more than one or two bladder cancers have occurred, start doing some fact-finding. It may be more than a coincidence. Since people move around, showing environmental causes is difficult as the exposure may have occurred years before.

– Finally, take care of yourself in a sustainable way. Walk more. Reduce portions. Eat more slowly and ingest more calories earlier in the day. These measures can be sustained whereas diets cannot.

These are just a few ideas, but the key message is be your own health care advocate as you are the only constant in any equation about your health. If you feel you cannot serve this role well, please take a trusted friend or family member with you. Doctors and nurses are marvelous care givers, but they are not perfect. You have to improve their service by being present in the conversations. It is only your or your children’s lives.

Medical errors are a problem – here are some thoughts on how to reduce them

Earlier this week, a US health news piece entitled “In a review of 337,000 patient cases, this was the no 1 most common preventative medical error” by Meera Jagannathan was made available on msn.com. This article echoes the findings of two pieces I have referenced previously, the first, a book called “Internal Bleeding: the truth behind American medicine’s terrible epidemic of medical mistakes,” written in 2004 by two internists Dr. Robert Wachter and Dr. Kaveh Shojania. The second was the Leapfrog Study which looked at deaths caused by medical errors toward the turn of the century. A link to the recent article is below.

The article reveals the results of four medical studies that analyzed medical death rates from 2000 – 2008. Of the just over 251,000 medical deaths, 9.5% of the deaths could be attributed to medical error. In other words, 1 out of 10 deaths could have been avoided as they resulted from a medical error.

The article focuses on nine things that should be done to reduce medical mistakes. I will just list them, but please click on the article link below.

  1. Make sure you fully understand the procedure and why it is necessary.
  2. Brief the doctors on your allergies, health conditions and medicines.
  3. Don’t assume every provider has access to your records.
  4. Bring a friend or family member if the patient is not good with asking questions about what is happening.
  5. Keep close track of your medicines and results.
  6. Make sure the doctors and nurses wash their hands.
  7. Research wisely.
  8. Don’t be afraid to speak.
  9.  Ask providers what they are doing to prevent  mistakes.

The Leapfrog study noted three things to reduce deaths due to medical errors.

  1. Have complex surgeries performed in centers of excellence where they have done multiple hundreds or thousands of the procedure.
  2. While dated, poor handwriting of prescriptions or instructions caused mistakes. Most hospitals now have electronic orders, but be sure you understand what is being asked or prescribed.
  3. Make sure there are doctors on site and not just residents in intensive care units.

I wrote earlier about the book “Internal Bleeding,” so I provided a link below. Reviewing that summary and comparing to the above, here are a few more thoughts from that post as well as a few others thrown in.

  • write a summary of your and your family medical history
  • write down what your symptoms are – people see the white coat and forget.
  • if you are not sick or injured, the hospital is the last place you should be; some hospitals incent ER doctors to admit patients; ask questions about this.
  • know your environment; if you have bladder or some other cancer it may be environmental not familial. Bladder cancer is a bellweather environmental caused cancer.
  • ask for other pain medications beside opioids; they should be only used for severe pain and for short durations.
  • introduce yourself to all providers; make sure they know who you are.
  • Complete the prescription regimen and don’t stop when you are feeling better.

Medical professionals do not want medical errors either. So, help them help you. And, if you have trouble advocating for yourself, take a trusted person with you.

https://www.msn.com/en-us/health/health-news/in-a-review-of-337000-patient-cases-this-was-the-no-1-most-common-preventable-medical-error/ar-AAEGPVF?ocid=spartandhp

https://musingsofanoldfart.wordpress.com/2012/07/28/internal-bleeding-be-your-own-health-care-advocate/