Internal Bleeding – 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.

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15 thoughts on “Internal Bleeding – Be your own Health Care Advocate

  1. All great info. I’m amazed at times of the number of people I meet who, when asked why they are following a certain path, reply, “Thats what the Dr told me to do” WRONG!!!

    Unfortunately, I have a history of health issues, (bad genes, I guess) but in every situation, I asked, sometimes demanded full explanations, even telling one Dr several years back that if he couldn’t take the time to explain it to me clearly, then I wouldn’t waste my time in his care. He was taken aback, but took the time.

    Your last paragraph is most important. Dr and health care providers do their best, but ultimately our care is OUR responsibility. I think this is even more important in todays times where providers are pushed to rush each patient through.

    Great post

    • Thanks for reading and the personal observations. Your candid conversation with the doctor is a great story. At the end of the day, you are the one who is affected, not him.

  2. This is such an important issue. We all assume the doc knows best, but sometimes we forget they are only human. Thanks for an important reminder and a great list of suggestions for how to take this into our own hands!

  3. Make sure both the doctor and the pharmacy know current allergies. Even then ask, “is this medication related in any way to the one I am allergic to?”

    Also have a living will/directive that includes the name of the person that you want to make health care decisions if you are unable.

    • Great ideas. I think people do not take advantage of the symbiotic role the doctor and pharmacist play. Recently, when my son’s maintenance med became available as a generic, he was allergic to the generic breaking out in a rash. So, we needed to get everyone on the same page to get the brand at the more reasonable price.

      Th living will and healthcare delegation is critical. My mother-in-law had a do not prolong her life wish in writing as she had Alzheimers. So, when she got a terrible infection, we followed her wishes. She could have been prolonged for a short duration, but that would have been against her will. Thanks for reading.

  4. Great post! It makes me wonder; where is all of the money going; if the US spends the most per capita on medicine, why is it unable to assure the best healthcare system? I agree that much of the problem lies within Americans; in America everyone seems content togo with the opinion of their primary doctor. In Singapore where I live though, despite being ranked the 6th best healthcare system in the world with minimal cost and minimal subsidies (somehow), it is common to get a second or even a third opinion before undergoing any major operation.

    • The US has several issues it must deal with. With so many insured (prior to full implementation of the Affordable Care Act), the cost is borne by other payers which is inefficient. Plus, there is a huge healthcare industrial complex so excessive charges are imbedded within, their billing write-ups (through unbundling of services), extra testing due to risk management, etc. Plus, there is a reluctance to question your doctor, which we should do more of as this is art and science. Finally, we are the heaviest nation in the world and over medicated. Add all that up and we spend more money without getting the return. If anyone tells you we have the best health care system in the world – the answer is no we don’t, unless you have something major wrong with you and you can afford it. Thanks for your observations.

  5. Good advice! I learned this first hand recently when I was having some problems with heart irregularity. I saw three cardiologists (including two at the Mayo Clinic) and had numerous tests and they all wanted me to take a prescription drug. I read online that magnesium is an element in the system that regulates heart rhythms and that alcohol can interfere with its effectiveness. I drank a couple of beers regularly and decided to cut them out altogether. Voila! The irregularity has all but stopped. No meds. Medicine, as you say, is not an exact science and American medicine is tied way too closely to the drug industry. As you say, “be your own health care advocate.” Indeed!

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