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.